LTCcovid International living report on
COVID-19 and Long-Term Care

The LTCcovid International Living report is a “wiki-style” report addressing 68 questions on characteristics of Long-Term Care (LTC) systems, impacts of COVID-19 on LTC, measures adopted to mitigate these impacts and new reforms countries are adopting to address structural problems in LTC systems and to improved preparedness for future events. It is compiled and updated voluntarily by experts on LTC all over the world. Members of the Social Care COVID-19 Resilience and Recovery project are moderating the entries and editing as needed.

The report can be read by question/topic (below) or by country: COVID-19 and Long-Term Care country profiles.


To cite this report (please note the date in which it was consulted as the contents changes over time):

Comas-Herrera A, Marczak J, Byrd W, Lorenz-Dant K, Patel D, Pharoah D (eds.) and LTCcovid contributors. LTCcovid International living report on COVID-19 and Long-Term Care. LTCcovid, Care Policy & Evaluation Centre, London School of Economics and Political Science. https://doi.org/10.21953/lse.mlre15e0u6s6

Copyright is with the LTCCovid and Care Policy and Evaluation Centre, LSE.


 

PART 1.
Long-Term Care System characteristics and preparedness

1.00. Brief overview of the Long-Term Care system

Overview

Definitions of Long-Term Care:

In the World Report on Ageing and Health published in 2015 by the World Health Organization, Long-Term Care was defined as  “the activities undertaken by others to ensure that people with, or at risk of, a significant ongoing loss of intrinsic capacity can maintain a level of functional ability consistent with their basic rights, fundamental freedoms and human dignity”. This definition supports the idea of a system to enable people to live their best lives, irrespective of their disabilities and health conditions.

Long-term care “systems”

In practice, long-term care covers a wide range of services and activities that can take place in various settings, including the beneficiary’s home, their neighbourhood, hospices, residential settings and day-care facilities.

Long-term care benefits, services and activities typically span multiple government departments (health, social welfare, labour, housing) and levels (national, regional, local, community and family), which leads to fragmentation of responsibility, difficulties in coordination and, from the point of view of the persons who could benefit from services, benefits and activities, barriers to access.

In this section we aim to provide a very brief overview of long-term care systems around the world, at national or sub-national level. The term system is used as in the WHO World report on Ageing and Health, to refer to: all caregivers and settings where care is provided, as well as the governance and support services that can help them in their roles. This definition includes care provided in the formal and informal sector, paid and unpaid, publicly and privately provided and delivered, in people’s own homes, in the community and in institutional settings.

This is a comprehensive definition of long-term care covering care and support in the community and in congregate (“institutional”) settings, by formal care providers and by unpaid carers, and for younger and older adults. Some of the definitions used in the reports from the different countries may vary in terms of the groups and types of care included.

It is important to emphasise that experiences of a “long-term care system” (and care outcomes) differ, not only depending on which country/region they live in, but also by their local context (which is why there is growing use of the term “care ecosystem” see for example Dessers & Mohr, 2020), and of their own individual and family circumstances.

References:

Dessers, E. and Mohr, B. J. (2020) ‘An ecosystem perspective on care coordination: Lessons from the field’, International Journal of Care Coordination, 23(1), pp. 5–8. doi: 10.1177/2053434519896523.

 

International reports and sources

OECD countries

The Organisation for Economic Co-operation and Development (OECD) publishes regularly international reports and data on long-term care (click here).

WHO data

Some data on long-term care, for example on the numbers of countries that have a long-term care policy/plan/strategy is also available from the WHO’s Ageing Data portal (click here).

European countries

For European countries, the European Centre for Disease prevention and control (ECDC), also publishes data on the numbers of people in Long-Term Care Facilities (ECDC), and on number of beds (click here) There are country reports from EU countries (2018) on EU website:  (click here).

Latin American and Caribbean countries

the Interamerican Development Bank has developed the Panorama of Aging and Long-Term Care, gathering indicators, publications and case studies to support policy development (click here).

Australia

What is understood as Long-Term Care in Australia?

In Australia the term ‘long term care’ is seldom used.  ‘Aged care’ is the more common term.

Unlike many other countries older Australians needing support and people with disabilities aged under 65 are funded and supported under two distinct Australian government policies and funding arrangements: Aged Care and the National Disability Insurance Scheme (NDIS).

Aged Care

The two main forms of government-subsidised aged care (LTC) are residential aged care and home care.

The Australian government is the primary funder and regulator of the long-term care system. The government subsidises both home care and residential care for people of all ages who have been assessed as needing care and support. There are four main types of services under aged care: the Commonwealth Home Support Programme (CHSP) Home Care Packages (HCP), residential care and flexible care. More than 1.2 million people received aged care services during 2017–2018. 77% received support in their home or other community-based settings. Of Australians over the age of 65, 7% accessed residential aged care, 22% accessed some form of support or care at home, and 71% lived at home without accessing government-subsidised aged care services (sources: Care, Dignity and Respect report; Aged Care and COVID-19 report).

The National Disability Insurance Scheme (NDIS)

The NDIS, implemented from 2013 to 2020, has established a needs-based system of care and support for people with disability with ‘permanent and significant’ disability, with assessment of need based on level of impairment. The NDIS provides individualised support for approximately 500,000 people across Australia (Hamilton et al forthcoming).

Last updated: February 15th, 2022   Contributors: Sara Charlesworth  |  Wendy Taylor  |  Lee-Fay Low  |  

Austria

Austria is a federal state and was one of the ‘early movers’ when it came to acknowledge long-term care (LTC) as a social risk that calls for solidarity and societal support for people in need of long-term care. With the introduction of the LTC allowance scheme in 1993, Austria followed its tradition as a continental, conservative welfare regime in which cash benefits dominate over the provision of social services. At the same time, the country deviated from this pathway as funding of the LTC allowances (attendance allowance) has been stipulated through general taxes rather than as a fifth pillar of the social insurance system.

With this original reform, competences between the federal state and the nine provinces were reshuffled in that the federal government became responsible for financing all cash benefits, including support for informal carers, while the provincial governments remained in charge to procure community care services and residential facilities. Indeed, home care services are almost entirely provided by private non-profit organisations (based on a long-standing tradition), while about 50% of residential facilities are managed by public entities, 25% by non-profit organisations, while the share of private for-profit providers has been increasing and is currently also at about 25%. To date, there are about 75,000 places in care homes, about 7,000 places in alternative housing and short-term facilities, while about 150,000 persons are using one or the other home care service throughout the year (Statistics Austria, 2021). As there are about 470,000 beneficiaries of the LTC allowance, it becomes evident that the large majority of people in need of care is being cared for at home with support by an informal carer, mainly by wives, daughters and step-daughters. In total, it has been estimated that there are about 801,000 Austrians involved in caring for a loved one at home, while 146,000 are supporting a family member who is living in a care home, i.e. more than 10% of the population (Nagl-Cupal et al., 2018).

A survey found that many Austrians experienced barriers to accessing care services, with availability of services being a major factor, as well as cost. Compared to other countries in the European Union, Austrians reported more concerns about the availability of residential care. This lack of availability of services translate in over-reliance on informal support and low confidence on the ability of the system to address future care needs (Ilinca et al., 2022)

Against this backdrop, a specific feature of the Austrian LTC system has developed over the past 25 years in terms of a partial replacement (or supplementation) of family care by live-in personal carers, mainly from neighbouring Eastern European countries. Although live-in migrant care is a widespread phenomenon across Europe, the so-called ‘24-hour care’ model in Austria has a special status with dedicated legal regulations and funding since 2007 (Schmidt et al., 2016). ‘Personal carers’ are registered as self-employed at the Austrian Chamber of Commerce, although most of them are also dependent on specialised brokering agencies in their home country or in Austria (Aulenbacher et al., 2020). Due to the geographic situation as well as to unemployment and wage differentials in neighbouring countries, the share of older people in need of care relying on migrant live-in carers has increased significantly over the past 15 years. To date, more than 66,000 personal carers accompany about 33,000 Austrians in need of care in their own households (ca. 7% of total beneficiaries of the LTC allowance).

This phenomenon contributes to additional complexity in the already fragmented structural framework of LTC in Austria. The lack of coordination among different LTC settings, and in particular between these and the acute health sector, has been a constant criticism over the past decades, and related caveats became even more evident since the onset of the SARS-CoV-2 pandemic and related measures such as travel restrictions and the closing of borders (Leichsenring et al., 2021).

Current initiatives are striving to address shortcomings in information, communication and coordination by means of a pilot project to establish 150 community nurses at municipal level. However, the imminent shortage of workforce in the LTC sector and related challenges of sustainable funding are calling for urgent and more far-reaching reforms. There are currently about 60,000 professionals working in the various settings of LTC. It has been forecasted that a minimum of 30,000 additional professionals would be necessary until 2030 to replace retiring staff and to satisfy the growing demand of formal care (Rappold & Juraszovich, 2019).

References

Aulenbacher, B., Leiblfinger, M. & Prieler, V. (2020). “Jetzt kümmern sich zwei slowakische Frauen abwechselnd um meinen Vater …” Institutionelle Logiken und soziale Ungleichheiten in der agenturvermittelten 24h-Betreuung. In: Seeliger, M., Gruhlich, J. (Hg.). Intersektionalität, Arbeit und Organisation. Weinheim and Basel: Beltz Juventa.

Ilinca S., Simmons C., Leichsenring K., Kadi S., Ondas K. & the InCARE team (2022) Attitudes, experiences, and expectations on long-term care in Austria. InCARE Factsheet No.1.

Leichsenring, K., Schmidt, A.E., Staflinger, H. (2021). Fractures in the Austrian model of long-term care: What are the lessons from the first wave of the COVID-19 pandemic? Journal of Long-Term Care, 2021, 33-42. DOI: https://doi.org/10.31389/jltc.54

Nagl-Cupal, M., Kolland, F., Zartler, U., Mayer, H., Bittner, M., Koller, M., Parisot, V., Stöhr, D., Bundesministerium für Arbeit, Soziales, Gesundheit und Konsumentenschutz (Hg.) (2018). Angehörigenpflege in Österreich. Einsicht in die Situation pflegender Angehöriger und in die Entwicklung informeller Pflegenetzwerke. Wien: Universität Wien/BMASGK.

Rappold, E. & Juraszovich, B. (2019). Pflegepersonal-Bedarfsprognose für Österreich. Wien: Bundesministerium für Arbeit, Soziales, Gesundheit und Konsumentenschutz.

Schmidt, A.E., Winkelmann, J., Leichsenring, K. & Rodrigues, R. (2016).  Lessons for regulating informal markets and implications for quality assurance – the case of migrant care workers in Austria.  Ageing & Society, 36(4), 741-763.

Statistics Austria (2021) Betreuungs- und Pflegedienste, available at http://www.statistik.at/web_de/statistiken/menschen_und_gesellschaft/soziales/sozialleistungen_auf_landesebene/betreuungs_und_pflegedienste/index.html

Last updated: March 22nd, 2022   Contributors: Kai Leichsenring  |  

Chile

The majority of people with support needs receive care from their family members, mostly women.

There is some provision of subsidized institutional care. In principle all long-term care facilities should be registered with the Ministry of Health and subject to staffing requirements. However, it has been estimated that half of all care homes are not registered or unregulated.

References:

Browne J, Fasce G, Pineda I, Villalobos P (2020) Policy responses to COVID-19 in Long-Term Care facilities in Chile. LTCcovid.org, International Long-Term Care Policy Network, CPEC-LSE, 24 July 2020.

Browne, J., Palacios, J., Madero-Cabib, I., Dintrans, P. V., Quilodrán, R., Ceriani, A., & Meza, D. (2021). Enablers and Barriers to Implement COVID-19 Measures in Long-Term Care Facilities: A Mixed Methods Implementation Science Assessment in Chile. Journal of Long-term Care, 114–123. DOI: http://doi.org/10.31389/jltc.72

 

Last updated: February 16th, 2022

China

Long-term care is mostly provided by family and other unpaid carers, with some provision by paid carers for those who can afford it. The Government covers the costs of care for people who fit the “Three No’s” category: no ability to work, no income and no family. Relying on families as the main source of care is increasingly under question given demographic and social changes resulting in smaller and geographically dispersed families. In response to this, the government has increased its focus on developing a formal long-term care system, initially through encouraging the rapid development of a private institutional care sector, setting targets for numbers of beds. This took place before developing regulation and quality assurance mechanisms and has led to the lack of development of community-based care. There are shortages of trained care professionals. There have been pilots of social long-term care insurance in 16 cities since 2016, with strong policy interest on these as a mechanism for long-term care financing. For a good overview read Feng et al. (2020).

Last updated: January 6th, 2022

Czech Republic

Informal care constitutes a major part of care provided to older and dependent people. It is estimated that roughly 52% to 75% of care is provided by relatives, at home. The introduction of care allowance in 2007 has been the most significant change in the social services system since the 1990s, and the allowance has been used to compensate informal carers. Formal LTC is based on a two-tiered system of regulation, funding, and services provision—separate for the health sector and for the social services sector and some private provision of LTC services have been developing, including a rise of unregistered LTC services (Sowa-Kofta et al., 2017).

References:

Sowa-Kofta, A., Wija, P. (2017). Czech Republic: Emerging policy developments in long-term care. CEQUA country report.

Last updated: February 3rd, 2022

Denmark

The Long-Term Care (LTC) system in Denmark is a universal and primarily public system. Access to LTC services is at no cost for home-based care, or with a means-tested co-payment. The LTC system has strong public and political support. It is a highly decentralized system, organised, financed and provided at the municipal level. There is a strong emphasis on community-based care, re-ablement and professionalisation of care staff (WHO, 2019).

The main law regulating social service provision and, implicitly, LTC provision is the Social Services Act, which passed in 1998. The Social Services Act emphasizes the users’ right to influence social service provision and enshrines the highly decentralized nature of the system, putting municipalities in a key position to shape long-term care.

In recent years there has been a decrease in the number of people who receive home care services, which resulted in more burden placed on unpaid carers (WHO, 2019; Rostgaard, 2020).

References:

Rostgaard T. (2020), The COVID-19 Long-Term Care situation in Denmark. LTCcovid, International Long-Term Care Policy Network, CPEC-LSE, 25 May 2020.

WHO (2019), ‘Denmark: Country case study on the integrated delivery of long-term care’. Accessed at: https://www.euro.who.int/2019/denmark-country-case-study-on-the-integrated-delivery-of-long-term-care-2019.

Last updated: February 3rd, 2022

Finland

Care for older people in Finland is primarily delivered at home and in the community. Over 90% of the older population (75+) live in their own home, with the majority receiving no formal care (~75%), some receive regular home care, or informal care. Less than 10% of the older population receives some kind of 24-hour sheltered housing or institutional care (source: https://drive.google.com/file/d/19z_e5j7bcPxUYh2qLBa6VwrVDVnWilv7/view).

Last updated: January 6th, 2022

France

Currently, there are 7,502 residential long-term care facilities welcoming 610,000 residents. Of these, 50% are public, 31% are not-for-profits and 24% are for-profit. There are 2,294 supported living settings. Hospitals also offer long-term care units, where there were 32,790 patients recorded in end-2015. There are approximately 886,000 people in receipt of domiciliary care, most of which are older people. Nursing and polyvalent domiciliary care services provide services to 125,7000 service users, and domiciliary care services provide care to 760,000 people (source: https://www2.assemblee-nationale.fr/static/15/pdf/rapport/i3633.pdf).

In 2015 there were 1.25M beneficiaries of the personal autonomy allowance for people over 60 in need of assistance with activities of daily living. (8% of over-60s)

The domiciliary care sector is extremely fragmented, with one department (local authority) having over 100 agencies. Financing is unprofitable. The difference between hourly rates under the personal autonomy allowance  and minimum hourly rates to cover costs were of 2.2€/hour in 2017.

Health policies are implemented by the Regional health agencies at the regional level (ARS, created in 2009). Social policies are under the responsibility of the local authorities at the local decentralized level. There is a joint responsibility for tariff setting and financing of operations in care homes. ARS do not have oversight of domiciliary care, except where a nursing component is involved.

Last updated: February 16th, 2022   Contributors: Camille Oung  |  

Germany

In 1995/96, a statutory Long-Term Care Insurance (LTCI) Scheme has been established in Germany. LTCI is mandatory to the population. Approximately 88% of the population is insured by the social LTCIs, 11% by private funds (Blümel et al., 2020). LTC benefits based on the LTCI are not means-tested.

In 2019, there were about 4.13 million beneficiaries of the LTCI that have been allocated into care grades 1 to 5. Out of these, approximately 0.91 million people were living in residential care homes, while most people receive care and support at home (80%). Those living in their own home may choose between cash and in kind-benefits from LTCI. More than 60% receive cash benefits to be supported by informal carers only while almost 30% choose in kind-benefits, partly mixed with cash-benefits, to use also formal care. Approximately 80% of people with LTC needs living at home have a level 2 and 3 care need (Destatis, 2020).

References

Blümel, M., Spranger, A., Achstetter, K., Maresso, A. & Busse, R. (2020) ‘Germany Health system review‘ Health Systems in Transition, 22(6). Available at: https://apps.who.int/iris/bitstream/handle/10665/341674/HiT-22-6-2020-eng.pdf?sequence=1&isAllowed=y (Accessed 11 February 2022).

Destatis (2020) Pflegebedürftige nach Versorgungsart, Geschlecht und Pflegegrade. Available at: https://www.destatis.de/DE/Themen/Gesellschaft-Umwelt/Gesundheit/Pflege/Tabellen/pflegebeduerftige-pflegestufe.html(Acessed 31 January).

Last updated: February 16th, 2022   Contributors: Klara Lorenz-Dant  |  Thomas Fischer  |  Kerstin Hämel  |  

Ghana

Particularly in rural communities in Ghana, children are expected to provide care for their parents if they need it when they are older. However, people who have no children or cannot have their support have difficulties accessing care should they need it (Deku et al., 2020).

References:

Deku, C. S., Forkuor, J. B., & Agyemang, E. (2021, March 1). COVID 19 meets changing traditional care systems for the elderly and a budding social work practice. Reflections for geriatric care in Ghana. Qualitative Social Work. SAGE Publications Inc. https://doi.org/10.1177/1473325020973323

Last updated: February 16th, 2022   Contributors: William Byrd  |  

Iceland

Care for older people in Iceland is delivered at local level through community based services such as home health (covering personal care and nursing) and social social care services (help with domestic tasks, meals and wheels, etc), funded by the municipalities. There are also service and day care centres to support people who live in their own homes. Responsibility for home health is with the home health district and responsibility for social services with the municipalities. Residential and nursing homes are provided by both public (usually municipal) providers and private non-profit and for-profit providers, the state pays the greatest share or the cost of running care homes.

In 2011-12, 21% of older people aged 80 or more were living in institutional facilities and 43% were receiving home home help, the share of older people in institutional facilities is higher than in other Nordic countries and this has been attributed to an incentive for the municipalities to shift costs to the state.

References:

Sigurveig H. Sigurdardottir, Omar H. Kristmundsson & Steinunn Hrafnsdottir (2016) Care of Older Adults in Iceland: Policy Objectives and Reality, Journal of Social Service Research,42:2, 233-245, DOI: 10.1080/01488376.2015.1137535

Last updated: February 16th, 2022

India

There is no formal or organized public LTC system in India, however a number of schemes cover some aspects of care for older people or people with disabilities and mental health conditions. Families (particularly women) are the main source of care, as well as untrained care workers such as “home attenders”. It is common to live in multigenerational households which providers opportunities for the rotation of carers and sharing of tasks, however, there are growing number of nuclear families, suggesting that this model of care will become less important over time (Rajagopalan et al., 2020).

There are some formal care services available, mostly provided by private and not-for-profit organisations, these include residential care, day care centres, geriatric care in some government and private hospitals and services by non-governmental organisations (Ponnuswami et al., 2017).

There are several policies and public programmes that aim to promote the welfare of older people and people with disabilities providing the legal framework. Social Welfare is implemented by the States, which means that there are important variations in the implementation of measures to support older and disabled people (UNESCAP, 2016).

References:

Ponnuswami I. and Rajasekaran R. (2017) Long-term care of older persons in India: Learning to deal with the challenges. International Journal on Ageing in Developing Countries, 2(1):59-71.

Rajagopalan. J., Huzruk. S., Arshad. F., Raja.P., Alladi. S. (2020). The COVID-19 Long-Term Care situation in India. LTCcovid, International Long-Term Care Policy Network, CPEC-LSE, 30th May 2020. https://ltccovid.org/wp-content/uploads/2020/05/LTC-COVID-situation-in-India-30th-May.pdf

UNESCAP (2016) Long-Term for Older Persons in India. SDD-SPPS Project Working Papers Series: Long-Term Care for older persons in Asia and the Pacific.

Last updated: February 16th, 2022

Ireland

Most LTC in Ireland is provided by unpaid carers supplemented by home care services. There are more public resources available for residential care than for home care services. By December 2018, 581 nursing homes in Ireland registered with the Health Information and Quality Authority offered 31,250 places for people with care needs. More than 460 of the homes are operated by private or voluntary (not-for-profit) providers), supporting 25,000 people. Ireland also has some ‘psychiatry of later life units’. Most of the residents are 65 years and older. Publicly funded support for home care can be obtained following a needs assessment conducted by a healthcare professional. So far financial means are not taken into consideration. Most home care services are provided by private providers, but these providers are contracted by the State. The role of the public sector in the delivery of home care is relatively small (Pierce et al., 2020).

References:

Pierce, M., Keogh, F., O’Shea, E. (2020). ‘The impact of COVID-19 on people who use and provide long-term care in Ireland and mitigating measures.’ Country report available at LTCcovid.org, International Long-Term Care Policy Network, CPEC-LSE, 13 May 2020

Last updated: February 16th, 2022

Israel

Israel has a fragmented LTC system with the National Insurance (NI), the Ministry of Health and the Ministry of Welfare and Social Affairs, holding different yet overlapping responsibilities for publicly funded LTC (source: Taub Centre).

Notably, Israel was one of the first countries to introduce publically financed LTC insurance. Still, it is not universal and is of partial coverage for the mild and severely disabled older people. Most of the LTC treatment in Israel is community-based. At the beginning of 2020, some 220,830 older people received publicly funded LTC services at home (source: National Insurance Institute of Israel).

Last updated: February 11th, 2022   Contributors: Sharona Tsadok-Rosenbluth  |  

Italy

The public system of LTC in Italy is underdeveloped and characterised by a high degree of institutional fragmentation, as sources of funding, governance and managerial responsibilities of public services are spread over local (municipal), regional and national authorities, with different methods according to the institutional models of each region (Gabriele et al., 2014). This fragmentation relates to the fact that the LTC sector originates from multiple legislative interventions over a period of more than 30 years.  Unpaid carers as well as care assistants privately hired by households,  represent the bulk of LTC provision (Fosti et al., 2021). There is no official data on the number of unpaid family carers, but estimates from 2018 suggest that about 2.8 million people aged 18-64 were involved in caregiving for their older or disabled relatives (ISTAT, 2019). Also the total number of home care assistants (privately employed, primarily migrant care workers) is unknown, but it has been estimated that this involves over 1 million people (Fosti et al., 2021).

References:

Barbarella F, Casanova G, Chiatti C and Laura G (2018), ‘Italy: emerging policy developments in the long-term care sector’.  Retrieved from: CEQUA LTC network report.

Fosti G, Notarnicola, E. and Perobelli, E. (2021), Le prospettive per il settore socio-sanitario oltre la pandemia. Rapporto Osservatorio Long Term Care 3. CERGAS, Università Bocconi. Retrieved from: il+welfare+e+la+long+term+care+in+europa+cover.pdf (unibocconi.it)

Gabriele S and Tediosi F (2014), Intergovernmental relations and Long Term Care reforms: Lessons from the Italian case. Health Policy 116 (1) 61-70. https://doi.org/10.1016/j.healthpol.2014.01.005

ISTAT (2019): CONCILIAZIONE TRA LAVORO E FAMIGLIA. Retrieved from: https://www.istat.it/it/files//2019/11/Report-Conciliazione-lavoro-e-famiglia.pdf

Rotolo, A. 2014. ‘Italia.’ In Fosti, G and Notarnicola, E, (eds). Il Welfare e la Long Term Care in Europa. Modelli istituzionali e percorsi degli utenti, 93–114. Egea, Milano. Retrieved from: il+welfare+e+la+long+term+care+in+europa+cover.pdf (unibocconi.it)

Last updated: February 16th, 2022   Contributors: Eleonora Perobelli  |  Elisabetta Notarnicola  |  

Jamaica

There is relatively little published information on the long-term are system in Jamaica. An article that set out to map long-term care in Jamaica found that care is largely provided by informal carers (both unpaid and paid). There is a high prevalence of unregulated care homes and limited formal home and community-based services. NGOs and places of worship are an important part of the few community-based services available (Goviat et al., 2021).

References:

Govia I, Robinson JN, Amour R, Stubbs M, Lorenz-Dant K, Comas-Herrera A, Knapp M. Mapping Long-Term Care in Jamaica: Addressing an Ageing Population. Sustainability. 2021; 13(14):8101. https://doi.org/10.3390/su13148101

 

Last updated: February 16th, 2022

Japan

Most of Japan’s LTC services are covered by the public long-term care insurance (LTCI) system that was introduced in 2000. The LTCI is administered by municipal governments and operates independently of the medical insurance system. The LTCI subsidizes non-medical services including residential care (long and short-term), day care, care services in people’s own homes and home adaptations. The insurance benefits do not cover room and board, but other than this, the level of re-imbursement is a relatively low level of co-payment (10%) (Estevez-Abe, 2021).

The Japanese LTC system has a large non-residential care sector: just under 1?million older people (2.6% of adults aged over 65) live in care facilities and 4 million older persons utilize day care facilities (2019) (Maeda, 2020).

In 2017 there were 24.1 LTC beds per 1,000 older adult population (source: https://ageingasia.org/wp-content/uploads/2020/12/COVID_LTC_Report-Final-20-November-2020.pdf). In 2014, 7.8% of those aged 65 or older used day care in Japan. Unlike many European countries, the Japanese LTC system does not offer cash benefits to people who need care or to family carers (Estevez-Abe, 2021).

References:

Margarita Estevez-Abe and Hiroo Ide. (2021). “COVID-19 and Japan’s Long-Term Care System.” LTCcovid.org, International Long-Term Care Policy Network, CPEC-LSE, February 27, 2021. Retrieved from: ltccovid.org

Maeda, K. (2020). ‘Outbreaks of COVID?19 infection in aged care facilities in Japan. doi: 10.1111/ggi.14050.

Last updated: February 16th, 2022

Latvia

The main players in the provision of formal LTC are: the national government, 119 local governments and 110 municipalities. In 2015, the 15-state financed social care institutions provided LTC social services for 5,353 clients; 86 local government and other organization social care centres provided LTC social services for 6,134 clients. Additionally, there were 83 such institutions in the country provided by local government in 2010, and the number increased to 86 institutions by 2015 (Calite-Bordane, 2017).

References:

Calite-Bordane, D. (2017). ‘Latvia: Emerging policy developments in long-term care’. Retrieved from: CEQUA Latvia Country report

Last updated: February 16th, 2022

Malta

The Maltese long-term care system is not even, in that service delivery for the older person requiring care, is spread across 3 Ministries, (a) Ministry for Health in Malta, (b) Ministry for Senior Citizens and Active Ageing in Malta, and (c) Ministry for Gozo, (source: https://www.gov.mt/en/Government/Government%20of%20Malta/Ministries%20and%20Entities/Pages/default.aspx). In the case of Public Private Partnership (PPP) agreements for private and church-run insitutions, 3 separate admission/assessement/care criteria and contractual obligations are therefore employed in lieu of the differing Ministries.  The Ministry for Health is responsible for offering services to circa 314 older persons through the PPP scheme; the Ministry for Senior Citizens and Active Ageing offers a service to approximately 3148 older persons through state run and private and church-run care homes employing the PPP agreement; and the Ministry of Gozo provides a service to around 53 older persons, through the PPP scheme, within a church-run care home, (source: https://ltccovid.org/wp-content/uploads/2020/06/LTC-covid-situation-in-Malta-6-June-2020.pdf).

No information is available on the websites for the Ministry of Health and the Ministry of Gozo in respect of the eligibility criteria, assessment, successive admission of older persons to the long-term care sector, as well as to contractual obligations for the service user and service provider, with no reference to service delivery within care homes, (source: https://www.gov.mt/en/Government/Government%20of%20Malta/Ministries%20and%20Entities/Pages/Ministries%202020/health.aspx), (source: https://www.gov.mt/en/Government/Government%20of%20Malta/Ministries%20and%20Entities/Pages/Ministries%20Nov%202020/Gozo.aspx).

The Ministry for Senior Citizens and Active Ageing, through the Active Ageing and Community Care (AACC), is responsible for the state run homes and other care homes employing the PPP scheme, (source: https://activeageing.gov.mt/active-ageing-and-community-care/?lang=en). Service delivery within the long-term care sector at AACC, is mainly centred around the levels of care the older person would be in need of as of the time of assessment, as follows, (a) Level 1 care, where long-term care services with only minimal basic care is provided and (b) Level2 care, where the level of care required for the older person and as indicated by the Interdisciplinary Assessment Team goes beyond the minimal basic care, (source: https://activeageing.gov.mt/wp-content/uploads/2021/05/LN-151-2018.pdf).

Older persons, (a) over the age of 60 years, (b) live with dementia, (c) require long-term care, and (d) can no longer live within their own home environment are eligible to apply for the state run (and PPP) long-term care services, (source: https://activeageing.gov.mt/residential-care/?lang=en).

Once an application for long-term care is compiled by the older person and/or next of kin/guardian, the Multidisciplinary Team, analyses aspects of the older person’s (a) Medical Report that would have been filled by the General Practioner, (b) social and wel-being, (c) cognitive difficulties, (d) mobility and dependency levels and (e) support network, (source: https://activeageing.gov.mt/residential-care/?lang=en).  Through this assessment, the Team decides on the level of care required, considering also the priority and urgency of the case in respect of the admission to long-term care, (source: https://activeageing.gov.mt/residential-care/?lang=en).

Saint Vincent de Paul (SVP) long term-care facility is on other state facility falling within the remit of the Ministry for Senior Citizens and Active Ageing, but autonmous from the AACC mentioned earlier, (source: https://activeageing.gov.mt/st-vincent-de-paul-long-term-care-facility/?lang=en). With a population of circa 1500 older persons, SVP offers high dependency chronic care services for the older person, through the Level 2 care  tier referred to previously, (source: https://activeageing.gov.mt/wp-content/uploads/2021/05/LN-151-2018.pdf), (source: https://ltccovid.org/wp-content/uploads/2020/06/LTC-covid-situation-in-Malta-6-June-2020.pdf).

The Maltese long-term care system also offers private self-funded care by the older person herself/himself through a number of private run organisations, (source: https://www.caremalta.com/our-homes/), (source: https://simblijacarehome.com/why-simblija/), (source: https://casa-antonia.com.mt/), (source: https://goldencare.com.mt/). These care homes advertise service provision to ‘patients’ falling within the medium to high dependency category, as well as older persons requiring respite care, or to older persons needing help to perform normal activities of daily living because of cognitive difficulties or loss of muscular strength or control).

A number of small church-run institutions for older priests and religious (around 9, source: https://ltccovid.org/wp-content/uploads/2020/06/LTC-covid-situation-in-Malta-6-June-2020.pdf ) are scattered across both islands of Malta and Gozo. No information on the Archidiocese of Malta or the Diocese of Gozo websites is available in respect of assessment and admission criteria or to the level of care offered to the older priests and religious.

Last updated: February 16th, 2022   Contributors: Maria Aurora Fenech  |  

Netherlands

Since 2015, LTC is governed through three separate legal acts: the Long-term Care Act (WLZ 2014), the Social Support Act (WMO 2015) and the Health Expenses Act (Zvw 2008). As a result, there are different rules and funding streams for care-related (LTC insurance), social support related (municipalities) and health and nursing related (health insurance) services. LTC is needs assessed but not means-tested (Bruquetas-Callejo and Böcker, 2021).

References:

Bruquetas-Callejo, M., Böcker, A. (2021) Governmental response to the COVID-19 pandemic in Long-Term Care residences for older people: preparedness, responses and challenges for the future MC Covid 19 Working Paper 11/2021

Last updated: February 1st, 2022

Poland

By law and by tradition, families are primarily responsible for care provision, with social institutions’ intervening when families are incapable of undertaking adequate care measures and LTC is provided mostly by unpaid carers in Poland. Some home care as well as residential care services are however also available through health and social care sector and more recently day care centres have gained prominence in providing support for people with LTC needs (Golinowska et al. 2017).

The rate of long-term care beds in Poland is not only low and their geographical distribution is uneven. In 2019, nearly one-fifth of counties had no access to long-term residential care. About 2.7 % of older people are in institutional care settings and 3.4 % use home care services. Some families draw on migrant carers, mostly from Ukraine, who tend to provide round-the-clock care (source: 2021: Ageing policies – access to services in different EU Member States).

References:

Golinowska, S., Sowa-Kofta, A. (2017) ‘The Polish policy landscape. Retrieved from CEQUA: Poland Country Report

Last updated: February 10th, 2022   Contributors: Joanna Marczak  |  

Portugal

Long-term care in Portugal is mainly provided by unpaid (mostly family and mostly women) carers, as well as a mix of public and private providers, with a strong role for non-profit providers.

In 2006 the Ministry of Health and the Ministry of Labour, Social Solidarity and Social Security established a National Network of Long-Term Integrated Care (Portuguese acronym: RNCCI), with the aim of providing care, health and social support to persons with functional dependency, with an emphasis on integrated care.

In parallel, there is a Network of Social Services (RSES) affiliated to the Ministry of Labour, Social Solidarity and Social Security, which provides social services to people with low resources or who experience social exclusion.

There is currently no mechanism for joint provision of services between the RNCCI and the RSES, but there are efforts to coordinate care happen at local level. There are concerns that the current system leads to over-institutionalisation and duplication of provision and that not enough support is in place for unpaid carers.

References: 

Lopes, S., Mateus, C. & Hernandez-Quevedo, C. (2018). Ten years after the creation of the Portuguese National Network for Long-Term Care in 2006: Achievements and challenges. Health Policy 122, 210-6. doi: 10.1016/j.healthpol.2018.01.001

Tello, J.E., Pardo-Hernandez, H., Leichsenring, K., Rodrigues, R., Ilinca, S., Huber, M., Yordi Aguirre, I. & E. Barbazza (2020). A services delivery perspective to the provision of long-term care in Portugal, Public Policy Portuguese Journal, Vol. 5(1), 8-25. Retrieved from: European Centre for Social Welfare Policy and Research

Last updated: February 10th, 2022

Republic of Korea

In 2008, South Korea introduced a universal, public long-term care insurance to complement the existing national health insurance. The LTCI covers residential, domiciliary and community-based care. By the end of 2018, approximately 9% of the population aged 65 and older were eligible for LCTI coverage (source: https://www.tandfonline.com/doi/full/10.1080/01634372.2020.1797977).

A shortage of qualified home-based care services in South Korea means that most older people have no choice but to depend heavily on residential institutional care. From 2012 to 2017, the number of long-term residential care facility beds per thousand people aged 65 years old and over significantly increased from 51.1 to 60.9, and the number of beds in long-term care hospitals was  36.7 per thousand people, the highest among OECD countries  (source: https://www.tandfonline.com/doi/full/10.1080/01634372.2020.1797977).

Long-term care hospitals (LTCHs) under the national health insurance play a role in long-term care provision; the average length of stay at such hospitals was about 168 days per year in 2016 Lengthy hospitalizations are likely a result of residential institutional care being financially supported by the national health insurance (NHI) and Long-Term Care Insurance (LTCI) (source: The-Long-Term-Care-COVID19-situation-in-South-Korea-7-May-2020.pdf).

Last updated: January 6th, 2022

Romania

The Romanian long-term care system is rooted in Law 17/2000 on Social Assistance for Older People, the first national legal act to regulate the provision of support services for older individuals with care needs. Subsequent legislation in 2003 and 2006 defined basic organization and functioning norms for home-based and residential care delivery at national level. In 2011, Law 292/2011 on the Social Assistance Framework defined the characteristics and the boundaries of Romania’s long-term care system, establishing eligibility criteria, the settings in which long-term care can be provided and the care services included in the service package. Since 2006, responsibilities for social service planning, financing and provision were transferred to local authorities, lead to increased fragmentation in care delivery and to large disparities in the geographical distribution and availability of services.

The Romanian LTC system emphasizes cash benefits to the detriment of service provision, which remain severely undersized with respect to care needs and distributed across the territory. Particularly weak is the provision of home and community based care, leading to increased demand for residential care services, in turn insufficiently developed to appropriately respond to population needs. As a result, the long-term care system overwhelmingly relies on the provision of care by family member and other informal caregivers.

While data on LTC coverage are insufficient and of poor quality, available evidence indicates long-term care coverage to be very low with respect to most European countries.

References: 

World Health Organization (2020) Romania. Country case study on the integrated delivery of long-term care. WHO Regional Office for Europe series on integrated delivery of long-term care. Copenhagen: WHO European Office. Retrieved from: WHO/Europe | Healthy ageing – Romania

Luana Pop (2018) ESPN Thematic Report on Challenges in long-term care Romania.

Last updated: February 10th, 2022   Contributors: Stefania Ilinca  |  

Singapore

Singapore’s approach to Long-Term Care (LTC) focuses on integrated care and active care management and coordination, aiming to reduce unnecessary utilization of institutional care. The approach is nested with an overarching Action Plan for Successful Ageing, as part of a policy shift towards a population health approach.

Singapore’s LTC policies are based on the principle of ‘Many helping hands’ that calls for individuals, families, communities, civil society, the private sector, and government to all play a role in ensuring the wellbeing of older people.

The system is designed with the aims of maximising prevention, promoting individual and family responsibility and reduce inefficiencies, with LTC as part of a wider integrated system covering public health, primary care, acute care, rehabilitation and long-term and palliative care.

Sources:

Asian Development Bank (2021) Singapore’s Long-Term Care System. Adapting to Population Ageing.

Last updated: January 6th, 2022

Spain

According to the Spanish Constitution, responsibility for Long-Term Care in Spain is mainly at the regional level (Autonomous Communities), although provincial and local authorities also have a role in care provision. Each autonomous community has legislated and designed its own care and social services systems.

The 2006 ‘Dependency Act’ (law 39/2006)  aimed to create new public national care coverage as the ‘fourth pillar of the welfare state’. The Act aims to guarantee the rights of citizens to personal autonomy and care to people in a situation of dependency, through the creation of the System for Autonomy and Dependency Care (SAAD). This is carried out with the collaboration and participation of all public administrations, and the central government guarantees minimum common rights for all citizens in any part of the territory of the Spanish State.

The Act established two types of long-term care benefits: 1) in-kind services, and 2) economic benefits, and gives priority to the former. All benefits and services established in the law are integrated into the social services provided through the autonomous regions (Guillen et al. 2017).

The catalogue of services and economic benefits of the Law is as follows:

Services :

a) Services for the prevention of situations of dependency and those for the promotion of personal autonomy .

b) Telecare Service.

c) Home Help Service (help with home tasks and personal care);:

  • Attention to the needs of the home.
  • Personal care.

d) Day and Night Centre Service :

  • Day Centres for the elderly.
  • Day Centres for those under 65 years of age .
  • Specialized Day Care Centres.
  • Night Centres.

e) Residential Care Service :

  • Residence for the elderly in a situation of dependency .
  • Care centres for people in a situation of dependency, due to the different types of disability.

Economic benefits :

  1. a) Cash benefits linked to the service.
  2. b) Economic provision of personal assistance.
  3. c) Cash benefits for care in the family environment.

The economic services and benefits that the autonomous communities may recognize for people in a situation of dependency in their territory, are integrated into the network of social services of each autonomous community.

References:

Montserrat Guillen, Ramon Alemany, Manuela Alcañiz, Mercedes Ayuso, Catalina Bolancé, Helena Chuliá, Ana M. Pérez-Marín, and Miguel Santolino (2017). Country Report: Spain. Retrieved from European Network on LTC (CEQUA).

 

 

Last updated: June 1st, 2022   Contributors: Sara Ulla Díez  |  Esther Pérez de Vargas Bonilla  |  

Sri Lanka

Long-term care provision has remained mainly with families, and formal LTC service provision is considered inadequate to meet even current needs and demand.  Home and community-based care services that support aging in place for elders with limitations in
ADL and IADL are rare; residential care is not appropriate in terms of available services or eligibility. Informal care at home is often provided by family members, usually,  a female relative. Untrained domestic workers are sometimes hired as caregivers.

Last updated: January 6th, 2022

Sweden

In 2019, over 160 000 of older people were provided with services and care in their own home and around 82 000 were provided with institutional care. A wave of closures of municipal institutional beds since the 2000s has resulted in a reduction of nearly 40% of all municipal places (source: Johansson and Schön, 2021).

References:

Johansson L. and Schön, P. (2020), ‘Governmental response to the COVID-19 pandemic in Long-Term Care residences for older people: preparedness, responses and challenges for the future: Sweden’, MC COVID-19 working paper 14/2021. http://dx.doi.org/10.20350/digitalCSIC/13701

Last updated: February 10th, 2022

Thailand

Families provide most of the care given to older persons, at home and without payment. Home-based care provided by trained volunteers or paid caregivers is growing, and helps to support informal care-support systems (source: Country Diagnostic Study on Long-Term Care in Thailand | Asian Development Bank (adb.org).

Last updated: January 6th, 2022

Turkey

There is no long-term care (LTC) insurance system in Turkey. Until recently, long-term care infrastructure has been scarce; Turkey has a familialist welfare system with the majority of the elderly population being taken care of by their families (in particular, by female family members) (Oglak et al., 2017). In fact, the Turkish Civil Code involves intergenerational obligations for family members to look after dependents. However, to some extent this system is beginning to erode, and as such that has been an expansion of LTC services in the past two decades. (Akkan & Canbazer, 2020).

A fraction of older people in Turley (0.4%) live in care homes. Of these, 61% are in public nursing homes and the remainder in private ones. Private entities were only allowed to open nursing homes from 2008, but since then the sector has been rapidly expanding. In 2020, 247 of the 426 nursing homes were private, and 179 public. Apart from these care homes, the state also provides community-based care facilities, care and rehabilitation centres (which may also be run by private entities), and day-centres  (Akkan & Canbazer, 2020).

References:

Akkan, B. (2017). “The politics of care in Turkey: Sacred familialism in a changing political context”, Social Politics: International Studies in Gender, State & Society, 25(1), 72–91, https://doi.org/10.1093/sp/jxx011.

Akkan B and Canbazer C (2020) The Long-Term Care response to COVID-19 in Turkey. LTCcovid, International Long-Term Care Policy Network, CPEC-LSE, 10 June 2020.

Oglak, S., Canatan, A., Tufan, I., Acar, S., & Avci, N. (2017). Long-Term Care in Turkey: Are We Ready to Meet Older People’s Care Needs?  Innovation in Aging, 1(suppl_1), 566–566. https://doi.org/10.1093/GERONI/IGX004.1991

Last updated: January 26th, 2022   Contributors: Daisy Pharoah  |  

England (UK)

The majority of long-term care in England is provided by unpaid carers. Formal long-term care in England is provided by a complex system involving organisations in charge of health, social care, housing and other services. There is an important distinction between means-tested social care (non-medical services aimed at supporting people with LTC needs with their daily living activities) and health care services, which are free at the point of use and funded from general taxation.

Formal care services include home-based care services, personal assistants, residential/institutional care, day care and professional services such as social work, occupational therapy and aids and adaptations. Most publicly funded services are commissioned at local level, but, as a large share of the population who use long-term care is not covered by the public system, a large share of care is purchased directly from private providers.

There is strong consensus on the urgent need to reform the social care system in England.

References:

Comas-Herrera, A., Glanz, A., Curry, N., Deeny, S., Hatton, C., Hemmings, N., Humphries, R., Lorenz-Dant, K., Oung, C., Rajan, S., Suarez-Gonzalez, A. (2020). The COVID-19 Long-Term Care situation in England. LTCcovid.org, International Long-Term Care Policy Network, CPEC-LSE

Marczak, J. Fernandez, JL, Wittenberg, R. (2017). Quality and cost-effectiveness in long-term care and dependency prevention: English policy landscape. CEQUA report

Thorlby, R., Starling, A., Broadbent, C., Watt, W. (2018). What’s the problem with social care, and why do we need to do better?  The Health Foundation, the Institute for Fiscal Studies, The King’s Fund and the Nuffield Trust

Last updated: March 10th, 2022

Scotland (UK)

In Scotland, Long-Term Care is known as social care. This care can take the form of care services delivered in a person’s own home, for example personal care support and meals services, or care provided in the community, for example day care and social work support, to care provided within a care home. Public Health Scotland estimated that in the financial year 2018/19, at least 245,650 people of all ages received social care services. Of those, over 77% were aged 65 and over.

Data from the Care Inspectorate Scotland show that at 31st March 2020 there were 1,083 registered adult care homes in Scotland, of which 817 catered for older people. Public Health Scotland (formerly Information Services Division Scotland) data from the Scottish Adult Care Home Census show that in 2017, there were 40,926 registered care home places for adults. This figure has decreased from 42,653 in 2007. Over the period 2007-2017, the number of registered places for older people has remained relatively stable at around 38,200 throughout the period. The pandemic has highlighted the data deficiencies within the care home sector The latest data available for Scotland from a report by Public Health Scotland show that in March 2017 there were 35,989 adult care home residents in Scotland (Source: Care Home Census for Adults in Scotland).

For the last two decades, Scottish policy has favoured care provision in individuals’ own homes rather than in care homes. According to the Care Inspectorate data as of 31st March 2019, there were 1,046 registered adult care at home providers in Scotland. A Public Health Scotland report on social care statistics in Scotland estimated that 91,810 people in Scotland received home care for all or some of the year ending 31 March 2019. The same report estimated that at the end of that period,  63% of adults with long-term care needs received personal care at home. Personal care is care associated with personal hygiene, feeding, toileting and appearance.  In 2017-18, 47,070 people aged 65+ were receiving personal care funded by the Scottish Government in their own homes (An Official Statistics publication for Scotland).

Last updated: March 10th, 2022   Contributors: Jenni Burton  |  David Bell  |  Elizabeth Lemmon  |  David Henderson  |  

United States

In the United States, there are five major types of LTC services: adult day centre, home health agencies, nursing homes, hospices, and residential living facilities. As of 2016, there were approximately 15,300 nursing homes and 28,900 residential care (‘assisted living’) facilities. Approximately 24 in every 1,000 people aged 65+ use nursing homes, and 15 in every 1,000 people aged 65+ live in residential care. 75 in every 1000 people aged 65+ use home health agencies for at-home services (source: Vital and Health Statistics).

Last updated: February 11th, 2022

Vietnam

The rapidly growing ageing population in Vietnam poses a significant challenge to the social welfare system. There is particular concern about the high prevalence of non-communicable diseases (NCDs), which are the dominant cause of death, in the over-50 population (source: Global Burden of Diseases Project).

There is currently no legal policy on long-term care. Some policies relating to older people have been enacted; mostly relating to their healthcare. For example, The Elderly Law (2009), which emphasises the role of primary healthcare and access to quality healthcare services for these members of the population. It also highlights the role and responsibility of families, communities, and broader society in caring for elderly people (Van et al., 2021). Indeed, most senior citizens in Vietnam live with and are cared for by their families; hence the common phrase, tu dai dong duong (four generations under one roof).

However, some people have complex needs that require support beyond what family members can provide, or indeed do not have families to provide such long-term care (in part due to children modernising and moving to cities for work). There are some institutions that are run by the government that cater for the elderly, the disabled, and orphans – such as social protection centres. However, these are only available to social assistance beneficiaries; for the elderly, this covers people over age 85 without social insurance or pension, and lonely or poor older people (Dung et al., 2020). According to a recent report by The Vietnam National Committee on Aging (VNCA), only around 10,000 elderly people in Vietnam live in public social protection centres (out of approximately 11 million older persons nationwide). This means that there is great demand for private institutional care.

Indeed, there are some long-term care facilities provided by the private sector and by mass organisations, such as The Red Cross (the latter being run by volunteers). Religious groups also provide some nursing homes – which are free of charge to those in need. Privately run nursing homes are mainly aimed at wealthier members of the population who are able to afford the steep $400-$1000/month fee (VNCA). It should also be noted that the supply of private nursing homes in Vietnam is expanding relatively slowly, as loans for construction are difficult to obtain and there are no incentives (tax concessions) provided for setting them up (Dung et al., 2020).

There are significant gaps in the provision of care in Vietnam: nursing homes are mainly found in larger cities, there are a limited number of social protection centres (which are inefficient and do not satisfy all needs), and, in light of a limited government budget, high co-payments are mostly out of pocket (Van et al., 2021).

Care Preferences

In their 2012 study, Van Hoi et al assessed willingness to use and pay for different models of care for community-dwelling elderly in rural Vietnam. They found the most requested service was use of mobile team care, and that using a nursing centre was intended by the fewest respondents, although households were found to be more willing to pay for elderly day care and nursing centres than older participants. Willingness to use services decreased as potential fees rose.

References:

Dung, V., Thi Mai Lan, N., Thu Trang, V., Xuan Cu, T., Minh Thien, L., Sy Thu, N., Dinh Man, P., Minh Long, D., Trong Ngo, P., & Minh Nguyet, L. (2020). Quality of life of older adults in nursing homes in Vietnam: https://doi.org/10.1177/2055102920954710

Van Hoi, L., Thi Kim Tien, N., Van Tien, N., Van Dung, D., Thi Kim Chuc, N., Goran Sahlen, K., & Lindholm, L. (2012). Willingness to use and pay for options of care for community-dwelling older people in rural Vietnam. BMC Health Services Research, 12(1), 1–12. https://doi.org/10.1186/1472-6963-12-36/TABLES/7

Van, P.H., K.A. Tuan and T.T.M. Oanh (2021), ‘Older Persons and Long-term Care in Viet Nam’, in Komazawa, O. and Y. Saito (eds.), Coping with Rapid Population Ageing in Asia. Jakarta: ERIA, pp.45-56. Link

Last updated: January 6th, 2022   Contributors: Daisy Pharoah  |  

1.01. Population size and ageing context

Overview

Global ageing context

Population ageing is a global phenomena, as most countries see a growth in the size and the proportion of older people in their population, although between 2009 and 2019 population ageing has been fastest in parts of Asia, Latin America and the Caribbean (source: UN: World Population Ageing).

In 2019, out of a global population of nearly 7,713 million people in 2019 (https://population.un.org/wpp/), 703 million people were aged 65 years or over. The latter number is expected to grow to 1.5 billion by 2050, when older people would represent 16% of the global population. The number of people aged 80 and over is expected to grow from 143 million in 2019, to 426.4 in 2050, with the largest increases projected for Northern Africa, and Western Asia (source: UN: World Population Ageing).

Population ageing and LTC demand

In the absence of global estimates on the numbers of people who receive care from others and are supported by LTC services, increases in the numbers of older people are often used to approximate expected increases in need for care. This is because, while there are many reasons why people rely on care and support that are not linked to age, as people reach older ages, they are more likely to need some support from others in their daily lives.

Moreover, despite some evidence of compression of disability at old ages, the review of evidence on whether increasing life expectancies in Europe translate into more years lived in better or worse health, showed mixed results, with considerable differences between countries (Rechel et al. 2020). Consequently, as the proportion and total number of older people increases, health and care systems in many countries are expected to face increased demand for care and support (Institute for Health Metrics and Evaluation; 2021 Long-term care in the EU).

References:

Rechel, R. Jagger, C., McKee, M. (2020) Living longer, but in better or worse health? WHO European Observatory on Health Systems and Policies

International reports and sources

Global data

The World Health Organization’s Ageing Data Portal brings together data on global indicators to monitor the health and well-being of older people:  https://www.who.int/data/maternal-newborn-child-adolescent-ageing/ageing-data. 

United Nations provides data on global population projections: https://www.un.org/development/desa/pd/sites/www.un.org.development.desa.pd/files/files/documents/2020/Jan/un_2019_worldpopulationageing_report.pdf.

European data

Eurostat has data on demography, population stock and balance, as well as population projections in Europe

2021 Long-term care report Volume 1 and Volume 2 – Publications Office of the EU provides some information on population ageing and LTC in Europe

Australia

Australia has a population of just over 25 million people. In 2019, 15.9% of Australia’s population were over the age of 65 and 2% of the population is over the age of 85.  Australians are living longer than ever before. The number of Australians aged 85 years and over is expected to increase from 515,700 in 2018–2019 to more than 1.5 million by 2058 (sources: Statista; Royal Commission into Aged Care Quality and Safety).

Last updated: February 15th, 2022   Contributors: Adelina Comas-Herrera  |  Ben Admin  |  

Austria

In 2016 Austria had a population of 8.6 million, of whom 0.81 million required help from others to carry out activities of daily life (European Commission, 2019). Furthermore, 18.2% of the Austrian population (1.5 million people) are aged 65 years and older, with demographic ageing being observed particularly in rural areas. Approximately 20% of Austrians with LTC needs live in one of the 930 care homes. These homes, on average, can house about 80 people (Leichsenring et al. 2021).

References: 

European Commission (2019) Joint Report on Health Care and Long-Term Care Systems & Fiscal Sustainability, Retrieved from: Country Documents 2019 Update (europa.eu) 

Leichsenring, K., Schmidt, A.E., Staflinger, H. (2021). Fractures in the Austrian model of long-term care: What are the lessons from the first wave of the COVID-19 pandemic? Journal of Long-Term Care, 2021, 33-42. DOI: https://doi.org/10.31389/jltc.54

Last updated: February 2nd, 2022

British Columbia (Canada)

As of 2019, the total population in BC is 5,071,336. There are 948,062 people over the age of 65 and 118,479 people over the age of 85 (source: https://bcstats.shinyapps.io/popApp/).

Last updated: February 11th, 2022

Chile

In 2017 there were nearly 3,500,000 people aged 60 or over in Chile, of whom 14.2% (489,000) had some degree of functional dependency (Browne et al., 2020).

References

Browne J, Fasce G, Pineda I, Villalobos P (2020) Policy responses to COVID-19 in Long-Term Care facilities in Chile. LTCcovid.org, International Long-Term Care Policy Network, CPEC-LSE, 24 July 2020.

Last updated: December 22nd, 2021

Czech Republic

In 2020, there were 10,101,777 inhabitants in the Czech Republic. The total increase this year was 7.8 thousand inhabitants, the lowest in the last decade, while the decrease was 19.1 thousand, which was the largest in the last 100 years.

The population in the three main age groups in 2020 developed in the same direction as in previous years. The child population (0–14 years) grew by 9.5 thousand persons to 1.72 million year-on-year and thus represented 16.1% of the total population. The number of older people (aged 65 and above), which has been growing since the mid-1980s, has grown by a further 26.7 thousand to 2.16 million, and for the first time in its history its share in the population has exceeded 20% of the total residents. The increase in the share of people aged 65+ in the population of the Czech Republic was due to strong vintages – people born in the second half of the 1940s, and a long-term increase in life expectancy. However, for both children and seniors, the growth rate in 2020 was the lowest in the last ten years. The number of people of working age (15–64 years) has a declining trend in the last twelve years, in 2020 it decreased by 28.4 thousand to 6.82 million people, which was 63.8% of the total population.

From 2011 to the end of 2020, the average age of the Czech population increased by less than two years to 42.6 years. The index of economic dependence, which indicates the number of persons in the non-productive age (0–19 years and 65+ years) per 100 persons in the economically productive age (20–64 years), increased from 55 to 69 in the given period.

In 2020, mortality was fundamentally affected by the epidemic situation associated with the occurrence of covid-19. During the year, almost 129.3 thousand people died, which was 15.1% more than in 2019, while in previous years the annual declines were below 3.5%. The greatest impact of the epidemic in 2020 was observed in the age groups 75-79 and 80-84, where the number of deaths increased by more than one-fifth year-on-year – in each group by more than 3,000, and in the highest group 100+ there was an increase of two-fifths .

In 2020, diseases of the circulatory system caused the deaths of 36.5% of all men who died and 43.1% of women who died, their lower proportion being affected by the fact that a large proportion of the total number of deaths were attributed to covid-19. The second place in men and women has long been occupied by neoplasms, whose share in the total number of deaths has been relatively stable in the last decade at around 28% for men and 23% for women. In third place was placed in 2020 by a group called “Codes for special purposes”, which was filled in the Czech Republic only by covid-19. A total of 10,539 people died of the disease (8.2% of all deaths), of which 5,938 were men (8.9% of all men who died) and 4,601 women (7.3% of women who died). The fourth most common cause of death (with a share of 7.0% in men and 5.8% in women) in 2020 was respiratory diseases. Fifth, endocrine, nutritional and metabolic diseases, which make up more than four-fifths of diabetes mellitus, ranked fifth overall. Other causes include external causes – injuries, traffic accidents, diseases of the digestive and nervous systems (Source: https://www.czso.cz/csu/czso/aktualni-populacni-vyvoj-v-kostce).

 

Last updated: February 3rd, 2022   Contributors: Martina Paulíková  |  

Denmark

In 2021 Denmark had a population of just under 6 million; 19.4% of the population were over 65,  with 4.1% over 80 and 1.9% over 85 (source: https://www.dst.dk/en/Statistik). These numbers are expected to rise significantly, and according to calculations from Statistics Denmark, by 2053, 10% of the population will be over 80 (source: https://www.sst.dk/da/viden/aeldre).

Last updated: February 1st, 2022

Finland

The current population of Finland is 5,546,270. As of 2019, the number of people aged 70 and over was 874,314. Finland is a rapidly aging country, with the number of people over 70 growing by 100,000 in just three years (source: https://findikaattori.fi/en/14).

Last updated: February 10th, 2022

France

France has a population of 67.1 million (2018). In 2018 19.6% of the population were aged 65 years and older (13.1 million people) (source: Statistics France).

Last updated: December 3rd, 2021   Contributors: Camille Oung  |  

Germany

General population

By the end of 2021, Germany had a population of 83.2 million (Destatis, 2022).

Population 65 years and above

In 2018, 22% of the population (17.9 million people) were aged 65 years and older (Lorenz-Dant, 2020). Furthermore, population age is not distributed evenly across the country. In 2017, the share of population in the age of 65 years and older was higher in the Länder of eastern Germany (24%) than western Germany (21%) (Bundesinstitut für Bau-, Stadt- und Raumforschung, 2021).

People with long-term care needs

According to the German Federal Statistical Office (Destatis), in 2019 there were 4.1 million people with long-term care needs, 62% women (Destatis, 2020) . Given the uneven distribution of older people across the country outlined above, a difference can also be observed between the share of people living in residential care. Out of 100,000 residents living in the eastern states, there are 488,2 persons in need of long-term care compared to 394,0 in the western states (Bundesinstitut für Bau-, Stadt- und Raumforschung, 2021).

References

Bundesinstitut für Bau-, Stadt- und Raumforschung (2021) INKAR – Indikatoren und Karten zur Raum- und Stadtentwicklung. Available at: https://www.inkar.de/ (Accessed 31 January 2022).

Destatis (2020) Pflegebedürftige nach Versorgungsart, Geschlecht und Pflegegrade. Available at: https://www.destatis.de/DE/Themen/Gesellschaft-Umwelt/Gesundheit/Pflege/Tabellen/pflegebeduerftige-pflegestufe.html;jsessionid=ADFD935F5EE5A0113BFA74036FB518B2.live741 (Accessed 11 February 2022).

Destatis (2022) Press – Once again no population growth expected for 2021. Available at: https://www.destatis.de/EN/Press/2022/01/PE22_027_124.html  (Accessed 3 February 2022).

Lorenz-Dant, K. (2020) Germany and the COVID-19 long-term care situation. LTCcovid, International Long Term Care Policy Network, CPEC-LSE, 26 May 2020. Available at: https://ltccovid.org/wp-content/uploads/2020/05/Germany_LTC_COVID-19-26-May-2020.pdf (Accessed 3 February 2022)

Last updated: February 13th, 2022   Contributors: Klara Lorenz-Dant  |  Thomas Fischer  |  Kerstin Hämel  |  

Ghana

WHO has estimated that in Ghana, more than 50% of people between the ages of 65 years and 75 years require some assistance with daily activities. For those 75 years and older, the percentage jumps to more than 65% (source: https://www.who.int/publications/i/item/9789241513388).

Last updated: August 3rd, 2021

Israel

In 2015, the total population of Israel was 8.46 million, of whom 939,000-11%- were aged 65 and over. One in four households in the country included a person aged 65 or more (source: Brookdale Report).  

Last updated: February 11th, 2022   Contributors: Sharona Tsadok-Rosenbluth  |  

Italy

In 2020, 23.2 % of the total population in Italy was 65 years and older, the share of older people in the Italian society has been growing constantly in recent years. According to 2019 data, the country was considered to have the largest percentage of elderly population in Europe. This share is projected to rise up to 34% by 2045.

In 2019, 32.5% of people aged 65 and above reported living with chronic diseases, rising up to 47.7% among those abed 85 and over. 1 million persons aged 65+ require care or support devices.

Last updated: February 4th, 2022   Contributors: Eleonora Perobelli  |  Elisabetta Notarnicola  |  

Japan

Japan has one of the largest populations of older adults in the world. In 2020, 28.4% of the population was over the age of 65 (source: https://www.stat.go.jp/english/data/handbook/pdf/2020all.pdf#page=23).

Last updated: February 10th, 2022

Malaysia

The population of Malaysia is roughly 32.4 million (World Bank). Since 2014, the share of the population over age 65 has been increasing; it went from 5.6% in 2014 to 7% in 2020. Malaysia therefore faces the prospect of an aging population; this may happen by 2030 (Statista).

The National Policy Order for Older Persons (2011) defines an older person in Malaysia as someone aged 60 years or older (Hasmuk et al., 2020).

References:

Hasmuk K, Sallehuddin H, Tan MP, Cheah WK, Rahimah I, Chai ST (2020) The Long-Term Care COVID-19 Situation in Malaysia available at LTCcovid.org, International Long-Term Care Policy Network, CPEC-LSE, 2 October 2020.

Last updated: February 16th, 2022   Contributors: Daisy Pharoah  |  

Malta

There was a 0.3% increase in Malta’s population from 2019 to 2020; the estimated population of residents of Malta and Gozo standing at 516,100 at the end of 2020.  People aged 65 and over amounted to 18.9% of the population, and 2,223 females and 984 males were aged 90 years and over. There was a 10.7% increase in the resident deaths in 2020 from 2019 largely, owing directly or indirectly to the COVID-19 pandemic.  In 2020, 4,084 resident deaths were registered, of these, 66% were people aged 75 or over, deaths among this group increased by 12.5% of deaths compared to 2019 (source: https://nso.gov.mt/en/News_Releases/Documents/2021/07/News2021_122.pdf).

Malta, together with other Southern European, is part of the oldest region in the world where 21% of the population is aged 65 years and over (source: https://www.prb.org/resources/countries-with-the-oldest-populations-in-the-world/).

Last updated: February 10th, 2022   Contributors: Maria Aurora Fenech  |  

Mauritius

The Government of Mauritius foresees rising rates of dementia and disability and increased overall demand for long-term care. It is planning for a 52% increase in publicly funded residential bed capacity by 2030 (source: https://www.who.int/publications/i/item/9789241513388).

Last updated: August 3rd, 2021

Netherlands

The population of The Netherlands is around 17.4 million (source: World Bank) and the median age is 43.3 years (source: Worldometres).

In 2021, 20.5% of the total population of The Netherlands was over age 65 and just under 5% was over 80 (source: Statista).

Last updated: February 5th, 2022   Contributors: Daisy Pharoah  |  

Pakistan

The population of Pakistan is 220.9 million, making it the sixth most populous country in the world, although it is projected to become the third most populous country by 2050. Pakistan has a predominantly young population, but in line with global trends, the elderly population in Pakistan is rising. In 2020, the population over age 60 was 6.7 million people; this is expected to rise to 40.6 million by 2050 (United Nations). In part, this is due to increasing life expectancy in Pakistan (although this is still low by global standards) (The Global Economy).

Pakistan is a developing country, with significant economic difficulties, lack of a health insurance coverage system, and low levels of savings among older people. This poses real challenges for the elderly population. Retirement age is 60 for men and 55 for women, although many do not stop working at this age.  Due to frail provision of pensions, most people work until their final days, and/or rely on their next generation to provide for them during retirement  (Jalal et al, 2014).

References:

Jalal, S., Younis, M.Z. 2014. Aging and Elderly in Pakistan. Ageing Int 39, 4–12 https://doi.org/10.1007/s12126-012-9153-4

Last updated: January 27th, 2022   Contributors: Daisy Pharoah  |  

Poland

Poland has one of the most rapidly ageing populations in the European Union (EU): by 2060, the proportion of the population aged 65–79 is expected to double and the proportion of the population aged 80+ is expected to triple (Golinowska et al. 2017).

References:

Golinowska, S., Sowa-Kofta, A. (2017) ‘The Polish policy landscape. Retrieved from CEQUA: Poland Country Report

Last updated: February 10th, 2022   Contributors: Joanna Marczak  |  Agnieszka Sowa-Kofta  |  

Republic of Korea

In 2020, the population was 51.27 million out of which 8.10 million (16%) were aged 65+. This proportion is projected to almost 43% by 2060 (source: The-Long-Term-Care-COVID19-situation-in-South-Korea-7-May-2020.pdf).

Last updated: November 25th, 2021

Romania

The total population of Romania in 2019 was 19.4 million inhabitants, registering a decline of 0.4 million with respect to 2015, as result of low natality and external migration.

The age structure of the Romanian population bears the characteristic marks of a rapid demographic ageing process. While the total population has declines over the past 5 years, the group aged 65 and over has increased by 225.2 thousand persons over the same period, to reach 19.7% of the total population in 2019.

Current projections point to a continued decline over the next decades, with an expected total population of 17.7 million in 2030 and 15.5 million by 2050 (Source:  Proiectarea populaiei României pe regiuni de dezvoltare i judee, la orizontul 2070).

Last updated: February 10th, 2022   Contributors: Stefania Ilinca  |  

Singapore

In 2021 there are 5.4 million people living in Singapore, of whom 3.9 million are residents (comprising 3.5 million Singapore citizens and 488,700 permanent residents).

Singapore’s population is ageing rapidly, in the population aged 65 and over was 639,000 (15.9%) out of its 4 million resident population. This is expected to rise to 23.8% of the population of residents by 2030.

Sources: Department of Statistics Singapore

Last updated: November 2nd, 2021

Slovakia

In 2021 Slovakia had population of 5.45 million people, of whom 17.1% were aged 65 and over. While in 2011, the pre-productive age population (0-14 years) had a higher share compared with the older population (65+ years), in 2021 it is the opposite. In 2021, compared to 2011, there was a slight increase in the share of the population in the pre-productive age (0-14 years) from 15.3 % to 15.9 %, but at the same time we can observe a significant increase in the population in older ages, whose share was 12.7 % in 2011 and increased to 17.1 % in 2021. The share of the working age population (15-64 years) decreased from 72.0 % in 2011 to 67,0 % in 2021. (Source: Slovak statistical office, 2021).

Last updated: February 10th, 2022   Contributors: Miroslav Cangar  |  

South Africa

In South Africa, 35% of people between the ages of 65 years and 75 years require some assistance with daily activities. For those 75 years and older, the percentage increases to 45% (source: https://www.who.int/publications/i/item/9789241513388).

Last updated: November 23rd, 2021

Spain

The population in Spain, as in the rest of Western societies, is going through a marked and continuous process of ageing of its population, due to social, health and cultural factors. According to the latest data from the INE (Institute of National Statistics. Data provisional as of July 1, 2021), Spain has a total population of 47,326,687 people, of which 9,444,037 are aged 65 or older (which represents 19.95% of the total); with 1,597,298 people aged 85 or older (3.38%). In addition, this ageing is noticeable in women, who account for 56.48% of the total number of people aged 65 or over, and 65.79% of people aged 85 or over.

In addition, and in relation to the population at risk of being in a situation of dependency, it is estimated that there is a total of 6,044,675 people (that is, 12.77% of the total population) who can be considered as “ potentially dependent” (based on factors such as age or recognized disability).

On the other hand, there is a gradual decrease in women of childbearing age and, if current demographic trends continue, the population loss in the next decade will be concentrated in the age groups of 30-49 years, with this group decreasing by 2.8 million (Martínez-Buján, et al, 2021).

References
Martínez-Buján, R.; Jabbaz, M. and Soronellas, M. (2021) El cuidado de mayores y dependientes en España ¿En qué contexto irrumpe la covid?. In Comas-d’Argemir, D. and Bofill-Poch, S. (eds.) (2021): El cuidado importa. Impacto de género en las cuidadoras/es de mayores y dependientes en tiempos de la Covid-19, Fondo Supera COVID-19 Santander-CSIC-CRUE Universidades Españolas. www.antropologia.urv.cat/es/investigacion/proyectos/cumade/

Last updated: May 26th, 2022   Contributors: Carlos Chirinos  |  Sara Ulla Díez  |  Esther Pérez de Vargas Bonilla  |  

Catalonia (Spain)

In 2019, the total population in Catalonia was estimated to be 7.619.494, of which 51% were women and 49% were men. Like most European regions, Catalonia has an ageing population, with 18,9% of the population aged 65 or older, and 6% of the population aged 80 or older. These figures follow an increasing tendency over the last decades and are expected to continue to do so (22,3% of the population is expected to be aged 65 or older in 2030 according to mid-range scenario projections). (Source: https://www.idescat.cat/pub/?id=aec&n=253&t=2010)

Last updated: February 10th, 2022   Contributors: Gemma Drou-Roget  |  

Sri Lanka

In 2019, approximately 15.9% of the population of Sri Lanka was older than 60 years of age, with 9.2% aged 60–69 years, 5.1% aged 70–79 years, and 1.6% over 80 years of age. Projections suggest that these proportions will increase, more than doubling between 2030 and 2050; 60% will be women. This also represents a significant increase in absolute numbers. The “old-age dependency ratio” is projected to rise steadily, from 20% in 2015 to 43% in 2050 (source: Country Diagnostic Study on Long-Term Care in Sri Lanka (adb.org).

Last updated: September 8th, 2021

Sweden

The current population (2022) in Sweden is 10.3 million (source: World Bank). In 2019, 1% of the population were 90 years or older, 5.2% were 80 years or older, and 20% were 65 years and older (source: Statista). Like many other states globally, Sweden faces a rapidly ageing population. The share of the population aged 80 and over is projected to grow by the most (a 50% from 2018) by 2028 (source: Statistics Sweden). Life expectancy in Sweden is one of the highest in the world (source: Sweden.se).

Last updated: February 10th, 2022

Thailand

The Thai population was 69,625,582 in 2019, life expectancy at birth was 73.12 years for men and 80.62 years for women in 2019. The number of older persons is expected to increase from 11.3 million (16.7% of the Thai population) in 2017 to 22.9 million (33% of the Thai population) by 2040 (source: Country Diagnostic Study on Long-Term Care in Thailand (adb.org)).

Last updated: September 8th, 2021

Turkey

The current population of Turkey is 84,339,067 (World Bank). Turkey still has a relatively young population, but the fertility rate has been steadily falling, while the percentage of the population over age 65 has been rising (Statista). The increasingly ageing population is resulting in swiftly increasing health expenditure and long-term care service needs (Oglak et al., 2017). The majority of the aging population is between ages 65 and 74 (Daily Sabah).

References:

Oglak, S., Canatan, A., Tufan, I., Acar, S., & Avci, N. (2017). Long-Term Care in Turkey: Are We Ready to Meet Older People’s Care Needs?  Innovation in Aging, 1(suppl_1), 566–566. https://doi.org/10.1093/GERONI/IGX004.1991

Last updated: January 26th, 2022   Contributors: Daisy Pharoah  |  

England (UK)

By mid-2020 the population in England was estimated to be 56,550,000, representing 84% of the total population of the United Kingdom. The median population age in England was 40.2 years. The share of the population aged 65 years and over was 18.5% and the share aged 85 and over was 2.5% (Source: ONS).

Last updated: December 4th, 2021   Contributors: Adelina Comas-Herrera  |  

Northern Ireland (UK)

In mid-2020 the total population in Northern Ireland was 1,896,000, which represents 2.8% of the total population of the United Kingdom. The median population age was 39.2. The share of the population aged 65 and more was 16.9% and share aged 85 and over was 2.1% (Source: Population estimates for the UK).

Last updated: March 8th, 2022

Scotland (UK)

In mid-2020, the total population of Scotland was 5,466,000, representing 8.1% of the total population of the United Kingdom. The media population age was 42.1 years. The share of population aged 65 or over was 19.3% and the share aged 85 or over was 2.3% (Source: ONS).

Last updated: March 10th, 2022   Contributors: Jenni Burton  |  David Bell  |  David Henderson  |  Elizabeth Lemmon  |  

United Kingdom

The total population in the United Kingdom in mid-2020 was 67,081,000. The median population age is 40.4, with 18.6% aged 65 and over, and 2.5% 85 and over (Source: ONS: Population estimates for the UK).

 

Last updated: March 8th, 2022

Wales (UK)

In mid-2020 the total population of Wales was 3,170,000, which represents 4.7% of the total population in the United Kingdom. The median age of the population was 42.4. The share of the population aged 65 and over was 21.1% and the share aged 85 and over was 2.7 (Source: Population estimates for the UK).

Last updated: March 8th, 2022

United States

As of 2019, approximately 16.5% of Americans were aged 65 and older, constituting more than 54 million people in a population of 320+ million (source: https://www.census.gov/topics/population/older-aging.html). Moreover, the number of people aged 65 and older is expected to double in the next 40 years (source: https://www.urban.org/policy-centers/us-population-aging).

Last updated: February 11th, 2022

Vietnam

Vietnam is a lower-middle income country in Southeast Asia with a population of just over 97 million people (source: World Bank). Since 1999, the percentage of the population aged 65 and over has been increasing, representing 7.9% of the total population by 2020 (source: World Bank). Meanwhile, the younger population (aged 14 and below) has been decreasing. These trends are predicted to persist (source: Vietnam Population Census); thus Vietnam is undergoing a demographic transition and is predicted to be an aging population by 2040 (source: United Nations). Vietnam is also one of the fastest aging countries globally (source: WHO). The growing elderly population in Vietnam poses a challenge to the social welfare system; the World Bank have therefore stressed the importance of developing relevant and timely health and social care solutions to ensure country capacity.

People in Vietnam are considered who are 60 years and older are considered “elderly”. The majority (more than 70%) of older people live in rural areas. There are more females than males in the aging population in Vietnam; an imbalance which is also higher in rural than urban areas. A minority (5.8%) of older people live alone (with most of these individuals being women in rural areas), and few (11.5%) live only with a spouse. Most older people in Vietnam are household heads and live with a child. As such, children and grandchildren are the main caregivers (Van Hoi et al., 2012). More recently, however, increasing employment opportunities in urban centres have resulted in temporary migration of the younger generations, leaving the more elderly members of the population on their own and with less emotional and physical support from family (Van Hoi et al., 2012).

References:

Van Hoi, L., Thi Kim Tien, N., Van Tien, N., Van Dung, D., Thi Kim Chuc, N., Goran Sahlen, K., & Lindholm, L. (2012). Willingness to use and pay for options of care for community-dwelling older people in rural Vietnam. BMC Health Services Research, 12(1), 1–12. https://doi.org/10.1186/1472-6963-12-36/TABLES/7

Last updated: December 30th, 2021   Contributors: Daisy Pharoah  |  

1.02. Long-Term Care system governance

Overview

Definition and goals

Governance has been defined as the processes and systems by which an organisation or a society operates, encompassing leadership, planning, implementation, management and accountability. Strong governance in Long-Term Care requires that the roles and responsibilities of the actors and institutions involved are clear, that there are structures and mechanisms for coordination and engagement with stakeholders (Allen et al. 2011; ADB Briefs).

National governance arrangements

Some countries have created specific agencies or ministries with responsibility for LTC to develop national policies and strategies to support the implementation of LTC laws and policies. This may be independent or based within a another ministry such as Ministry of Health (e.g. Singapore, Australia) or ministry of Labour and Social Policy (e.g. in Poland). In some countries several ministries are responsible for parts of LTC policies (e.g. Turkey). Whilst many strategies are developed at the national level, in some countries (e.g. Spain), they are developed from the subnational/municipal level and, in some cases, may be later pulled into a national policies. Moreover, LTC policies and strategies can be stand-alone or integrated into other policies. For example, in Japan, the policy framework for LTC is outlined in LTC insurance acts.

Integration

LTC governance often involves a wide range of stakeholders, including national and regional across multiple sectors (e.g. health, public health and social care, housing, transport etc). Coordination between different stakeholders at different levels is key to effective governance, although most LTC systems are poorly coordinated (see Section 1.06 for more details on care coordination). In fact the COVID-19 pandemic has shown that fragmented responsibilities for long-term care in most countries resulted in difficulties in the adoption and implementation of measures to mitigate the impacts of the pandemic.

References:

Allen K et al. (2011) Governance and finance of long-term care across Europe. Overview report. Birmingham/Vienna: University of Birmingham/European Centre for Social Welfare Policy and Research (Interlinks report 4).

 

International reports and sources

Asian Development Bank (2021) Leadership and Governance in Long-Term Care Systems in Asia and the Pacific. ADB Brief. http://dx.doi.org/10.22617/BRF210448-2

Allen K et al. (2011) Governance and finance of long-term care across Europe. Overview report. Birmingham/Vienna: University of Birmingham/European Centre for Social Welfare Policy and Research (Interlinks report 4).

European Commission (2021). Long-term care report. Trends, challenges and opportunities in an ageing society. Country profiles Publications Office of the EU (europa.eu)

African Union

The Executive Council of the African Union recently adopted a Common African Position on Long-Term Care Systems for Africa. Despite this progress, few regional or national frameworks exist to guide more specific action. Focused debate has been largely absent, reflecting the low policy and political priority accorded to long-term care, combined with a belief that the issue has little impact on economic development. With the exception of a few countries, little organized service capacity or national coordination exists. Rather, the provision of long-term care rests overwhelmingly with family members, which is fuelled by a belief among some that western models of organized long-term care pose a threat to African values (source: https://www.who.int/publications/i/item/9789241513388).

The African Union has drafted several policy frameworks relevant to long-term care. These include the AU Policy Framework and Plan of Action on Ageing; the Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Older Persons in Africa; and the Common African Position on Long-term Care Systems for Africa. At the national level, several countries including Ethiopia, Ghana, Kenya, Mauritius, Uganda, and the United Republic of Tanzania have adopted consistent overarching ageing policies or national legislation relevant to older people, such as the Older Persons Acts of South Africa and Zimbabwe. However, with few exceptions, national policies and legislation overlook significant aspects of sustainable systems of long-term care. In general, they do not provide a framework or roadmap for integrating long-term care across a range of settings and often do not examine the cultural norms and expectations inherent in substantial family involvement in long-term care provision. In addition, they do not specify mechanisms for preparing and supporting caregivers and rarely specify how to ensure a sustainable financing mechanism and workforce supply as the older population grows. Few of the frameworks address how to improve access and affordability for poor and marginalized groups (source: https://www.who.int/publications/i/item/9789241513388).

Last updated: January 6th, 2022

Australia

Australia is a federation and LTC is primarily the responsibility of the federal (Commonwealth) government which sets LTC policy, provides funding, oversights quality standards etc. Within the states, while funded by the Commonwealth and having to comply with Commonwealth standards, there are some nursing homes run by state governments  (e.g. Victoria runs 178 nursing homes) and some home care is provided by local government (e.g. in Victoria).

There is central oversight from the Australian government, as it is responsible for regulating and funding the majority of aged care services. However, state and territorial governments also have jurisdiction over the provision of aged care, which increases the complexity of the system and leads to a division of power.

The Australian Department of Health is responsible for the development and implementation of aged care policy, including advising the Australian Government, funding, and administration. The Aged Care Quality and Safety Commission is responsible for aged care regulation. State and Territory Governments, along with the private sector, are responsible for the delivery and management of health care, including aged care.

The Australian government’s Department of Health created the Royal Commission into Aged Care Quality and Safety in 2018 to evaluate the current Aged Care sector and to provide recommendations for reform. A group of experts in this commission have identified several weaknesses of the sector and have issued their final report (Royal Commission, 2020).

References:

Royal Commission into Aged Care Quality and Safety (2020) Aged care and COVID-19: a special report. Commonwealth of Australia. https://agedcare.royalcommission.gov.au/sites/default/files/2020-12/aged-care-and-covid-19-a-special-report.pdf 

Last updated: February 15th, 2022   Contributors: Sara Charlesworth  |  Wendy Taylor  |  Lee-Fay Low  |  

Austria

Governance of LTC system in Austria is relatively fragmented, in that the responsibility is divided amongst the federal government and the federal states in several ways. The federal government is in charge of the care allowance benefit, while the regional governments are responsible for the provision of care services (Fink, 2018). These responsibilities by the federal states include providing LTC services (i.e. in-kind benefits), planning the number of beds/spots for care, and regulating tariffs and subsidies. In terms of home care services, the federal states are responsible for regulating the framework conditions as it relates to funding, collective bargaining agreements for services and out-of-pocket payments by users.  Although the federal states are responsible by law for the provision of long-term care services for older adults in Austria, in practice, the responsibility for carrying out these services is shared with several entities, such as the municipalities, non-profit organisations and private operators (Rechnungshof Österreich, 2020).

References

Fink, M. (2018). ESPN Thematic Report on Challenges in long-term care. Austria 2018, Brussels, https://ec.europa.eu/social/BlobServlet?docId=19837&langId=en

Rechnungshof Österreich, 2020 Bericht des Rechnungshofes: Pflege in Österreich. Wien: RH Österreich

Last updated: February 2nd, 2022   Contributors: Cassandra Simmons  |  

Bulgaria

LTC consists of a wide range of medical and social services and is subject to a number of social and healthcare regulations. LTC under social services are provided in the community and in specialized institutions. LTC services are also regulated by the Health Act and are provided by different types of specialized medical institutions (Salchev, 2017).

References:

Salchev, P. (2017), Bulgaria: Emerging policy developments in long-term care. CEQUA country report.

Last updated: February 3rd, 2022

Canada

Provinces in Canada have jurisdiction over the health care sector but are governed under the Canada Health Act, which establishes “criteria and conditions related to insured health services and extended health care services that the provinces and territories must fulfil to receive the full federal cash contribution under the Canada Health Transfer”. LTC facilities are not included under the Canada Health Act and are solely under the jurisdiction of the 5 regional health authorities (source: https://www.canada.ca/en/health-canada/services/health-care-system).

Last updated: February 11th, 2022

British Columbia (Canada)

Five regional health authorities are accountable for all LTC including residential facilities and community care. However, public health authority owned facilities receive more support and oversight compared to privately owned facilities (source: https://news.gov.bc.ca/files/1.25.2021_LTC_COVID-19_Response_Review.pdf).  BC has five regional health authorities and a Provincial Health Services Authority (PHSA), is responsible for managing the quality, coordination, accessibility and cost of certain province-wide health care programs. Each health authority has oversight over their own publicly owned LTC facilities. However, there is lack of coordination between health and social care. Healthcare is monitored more by the national government although jurisdiction is under the provincial government, whereas social care is almost exclusively provided and monitored by regional health authorities within the province (source: Health Authority: Overview).

Last updated: February 11th, 2022

Czech Republic

Since the 1990s, experts in the Czech Republic have been working to address supply issues in long-term care because it stands between the social and health departments (Holmerová, 2018). A large number of working groups were set up to try to resolve this issue ( Holmerová, 2015).

The last group dealing with long-term care operated in the years 2018–2021. It included representatives – ministers of both ministries – the Ministry of Labour and Social Affairs of the Czech Republic and the Ministry of Health of the Czech Republic. After less than a year, the group ceased operations. Ministries have continue to prepare their own proposals and solutions that have never been published. The COVID-19 pandemic has hindered proposals for solutions or changes (Horecky et al., 2021).

In practice, post-acute care (“follow-up”) and long-term care are not always well distinguished. The term “long-term care” appears only in the Law on Health Care and in the  Bulletin 12/2019, of the Ministry of Health of the Czech Republic published   Methodological Recommendation for Follow-up and Long-Term Health Care, in which it defined as follow-up care – care for patients in need of treatment and long-term care – care for patients whose health cannot be improved and would worsen without nursing care (MZCR, 2019).

Long-term care usually follows acute or follow-up care. Long-term care can be provided in the patient’s own home-home environment, in a social care facility (residential homes and homes with special regime), in a medical facility where long-term inpatient care is involved, or in the form of palliative care (MZCR, 2019).

Long-term care is not enshrined in legislation (with the one above mentioned exception). There is growing awareness that the long-term care system in the Czech Republic needs to be reformed. It is important that both health and social groups seek solutions, and they must find a system that is financially sustainable in the long-term and for all the payers involved, be it the state, local governments, health insurance companies, long-term care clients and their families.  The disparity between long-term care needs and the insufficient capacities, quality and satisfaction with care has been attributed to the existing public policy and administration (Horecky et al., 2021).

Proposals for reforms to improve the system include the introduction of four basic principles (Horecky et al., 2021):

  1. Long-term care must be accessible, individualised and able to respond flexibly to changes in the health and needs of each person.
  2. Long-term care must be efficient in the use of financial resources and personnel, and ensure that the recipient always receives the support and care they need, taking into account their abilities and skills.
  3. Long-term care must be sustainable in the long run with a vision of development and future demand for LTC.
  4. It is important to strengthen community services – whether field or outpatient, whose proper functioning and support for people with impaired self-sufficiency in the home environment can fundamentally affect the demand for more expensive inpatient care.
 References:

HOLMEROVÁ, I. (2018) Case management v pé?i o lidi žijící s demencí: koordinace pé?e zam??ená na ?lov?ka. Praha: Fakulta humanitních studií Univerzity Karlovy, 2018. ISBN 978-80-7571-031-4.

HOLMEROVÁ, I. (2014) Dlouhodobá pé?e: geriatrické aspekty a kvalita pé?e. Praha: Grada Publishing, [2014]. ISBN 978-80-247-5439-0.

Horecky J, Potucek M, Cabrnoch M and Kalvach Z (2021) REFORMA DLOUHODOBE? PE?C?E PRO C?ESKOU REPUBLIKU. Asociace poskytovatelu? socia?lni?ch sluz?eb C?R. https://www.apsscr.cz/files/files/A4_STUDIE%20LCT%202021_FINAL.pdf

Ministerstva Zdravotnictví, MZCR (2019) Vestnik. https://www.mzcr.cz/wp-content/uploads/wepub/18287/39699/Vestnik%20MZ_12-2019.pdf

 

 

Last updated: February 6th, 2022   Contributors: Martina Paulíková  |  

Denmark

Although national legislation sets a broad framework for service provision, municipalities maintain responsibilities for long-term care policies. These include establishing eligibility and entitlement criteria and the level and content of service delivery, regulating services’ delivery and organizing the public provision of services.

In 2007 the number of municipalities was reduced from 275 to 98, creating larger administrative units. This change was accompanied by municipalities also taking charge of the rehabilitation of people who are being discharged from hospital, with municipalities taking a stronger role in prevention and health-oriented interventions (Rostgaard, 2020).

In 2015, the responsibility for regulating services and support for older people was transferred from the Ministry of Social Affairs and the Interior to the Ministry of Health. This transfer of responsibilities for regulation and oversight of care for older people was a clear move towards integrating central and strategic decision making for health and social services (WHO, 2019).

References:

Rostgaard T. (2020), The COVID-19 Long-Term Care situation in Denmark. LTCcovid, International Long-Term Care Policy Network, CPEC-LSE, 25 May 2020.

WHO (2019), ‘Denmark: Country case study on the integrated delivery of long-term care’. Accessed at: https://www.euro.who.int/2019/denmark-country-case-study-on-the-integrated-delivery-of-long-term-care-2019).

Last updated: February 3rd, 2022

Finland

The Ministry of Social Affairs and Health oversees the planning and drafting of all social care policy; it also monitors its service standards through 1) the National Supervisory Authority for Welfare, Valvira, which grants licenses to private and public care program, and 2) six Regional State Administrative Agencies (AVIs), which ensure standardization of care across the country.

Local municipalities are self-governing administrative units and have a key role in public administration. They are responsible for arranging and supervising the social and health services in their own area.

LTC is a policy priority for Finland’s Ministry of Social Affairs and Health, especially in the context of a rapidly growing older population with increasingly formal/institutional care needs. Clarity of accountability, assessment and monitoring when determining LTC service plans is a legislative priority. Implementation of legislative priorities is however challenging; the promoted value of self-determination often conflicts with ensuring the quality care provision plans (Ylinen et al, 2021).

References:

Ylinen, T., Ylinen, V., Kalliomaa-Puha, L. Ylinen, S. (2021), ‘Governmental response to the COVID-19 pandemic in Long-Term Care residences for older people: preparedness, responses and challenges for the future: Finland’, MC COVID-19 working paper 04/2021. http://dx.doi.org/10.20350/digitalCSIC/13692

Last updated: February 1st, 2022

France

France has a highly fragmented LTC system with operations at multiple levels at national, regional and municipal levels and significant regional variation. There is also limited coordination across actors, which all have different remits. Local authorities (departements) have the primary responsibility for social policies including those relating to age.

Regional Health Agencies (ARS) were created in 2009 trying to represent central government at regional level, which resulted in expansion of remit of regions to social care as well as health. Regional structures (ARS) have oversight of healthcare, and some social care which is designed to provide some level of integration across the two sectors.

Author 2: Alis Sopadzhiyan (LTC Covid profile pending)

Last updated: January 6th, 2022   Contributors: Camille Oung  |  

Germany

Decision making powers

In the German health system as well as in the long-term care system decision-making power is shared between the Federal and the State Governments (Blümel et al., 2020). Even more importantly, the state only sets a legal framework for health and social care delivery, while major governance decisions are left to self-regulated provider and payer organisations. For long-term care the main decision-making power rests with the long-term care insurance funds on the one hand and providers of residential or community care services on the other. By law, long-term care insurance funds have to guarantee the provision of services that meet the demand by the population. Municipalities and local authorities have no authority over what services are provided within their region. The legal framework for long-term care, including the different actors, their roles and the list of benefits, is laid out in the Social Code Book XI (Lückenbach et al., 2021).

A Commissioner for Care

The German Federal Government created the role of a ‘Commissioner for Care’ in 2014 . The role of this position is to advocate for the interests of people with care needs in the political arena and to ensure that the health- and care system are centred around them. This office is involved in all matters (legal, orders etc.) to do with care and nursing. (Die Bevollmächtigte der Bundesregierung für Pflege, n.d.) , but is not directly involved in system governance. Germany does not have a Government Chief Nurse. Since 2014 the representative for care held the position of a permanent secretary at the Department of Health, reporting directly to the Minister of Health with a dedicated team of staff. In 2022 the Government transferred the role to a Member of Parliament and scraped the dedicated staff.

The role of the medical service in providing control of provision and quality of services

The medical service (Medizinischer Dienst (MD)) ensures that services provided through health- and long-term care insurance are provided to people based on objective medical criteria and that all people with insurance coverage receive services based on the same conditions. It aims to ensure that people receive necessary services but also are protected from those that are unnecessary or potentially harmful. The MD evaluates quality of services on an annual basis. The Social bill ensures that members of the MD are independent.

Public reporting of provision and quality of care

The LTC insurance funds are required to publish the quality reporting of the MD. The report consists of 59 criteria in the areas ‘care and medical care’, ‘handling of residents living with dementia’, ‘support and everyday life’ as well as ‘living, food, housekeeping and hygiene’. In addition, people living in residential care setting and people receiving support in the community are being ask about their experience (Medizinischer Dienst, n.d.; Jacobs et al., 2018).

References

Blümel M., Spranger A., Achstetter K., Maresso A. & Busse R. (2020) ‘Germany: Health system review’. Health Systems in Transition. 22(6): pp.i–273 Available at: https://apps.who.int/iris/bitstream/handle/10665/341674/HiT-22-6-2020-eng.pdf?sequence=1&isAllowed=y (Accessed 10 February 2022).

Bundesministerium für Gesundheit (2020) Pressemitteilung – Bundesrat stimmt Gesetzespaketen zur Unterstützung des Gesundheitswesens bei der Bewältigung der Corona-Epidemie zu. Available at: https://www.bundesgesundheitsministerium.de/presse/pressemitteilungen/2020/1-quartal/corona-gesetzespaket-im-bundesrat.html (Accessed: 31 January 2022)

Die Bevollmächtigte der Bundesregierung für Pflege (n.d.) Amt und Person. Available at: https://www.pflegebevollmaechtigte.de/amt-und-person.html (Accessed: 31 January 2022)

Jacobs, K., Kuhlmey, A., Gre?, S., Klauber, J. & Schwinger, A. (2018) Pflege-Report 2018:  Qualität in der Pflege. Available at: https://link.springer.com/content/pdf/10.1007%2F978-3-662-56822-4.pdf (Accessed: 31 January 2022).

Lückenbach, C., Klukas, E., Schmidt, P. H. and Gerlinger, T (2021), ‘Governmental response to the COVID-19 pandemic in Long-Term Care residences for older people: preparedness, responses and challenges for the future: Germany’, MC COVID-19 working paper 06/2021. http://dx.doi.org/10.20350/digitalCSIC/13694 Available at: https://drive.google.com/file/d/1-RDnqErydbuGGNXlM8WaFB2oSTRKStTc/view (Accessed 31 January 2022)

Medizinischer Dienst (2020) Pressemitteilung – Ab Oktober wieder persönliche Pflegebegutachtungen und Qualitätsprüfungen. Available at: https://www.medizinischerdienst.de/aktuelles-presse/meldungen/artikel/ab-oktober-persoenliche-pflegebegutachtungen-und-qualitaetspruefungen/ (Accessed 31 January 2022).

Medizinischer Dienst (n.d.) Der Medizinische Dienst im Gesundheitssystem. Available at: https://www.medizinischerdienst.de/medizinischerdienst/medizinischer-dienst-gesundheitssystem/ (Accessed 31 January 2022).

Last updated: February 12th, 2022   Contributors: Klara Lorenz-Dant  |  Thomas Fischer  |  Kerstin Hämel  |  

Israel

Accountability is an issue in LTC services in Israel, due to the private and insular nature of Israel’s predominant culture of at-home LTC services. The creation and implementation of a national care coordinator and a working group to streamline LTC enrolment and increase transparency were explicit components of the 2018 governmental reform. Results of the effectiveness of this rollout have been unclear, and undoubtedly interrupted by the COVID-19 pandemic.

Last updated: January 6th, 2022

Italy

As with the National Health System, LTC sector is a regional competence. The Ministry of Labour and Social Policy and the Ministry of Health are responsible for defining the national framework, the issue general guidelines, and fund specific interventions to secure regional equity. At the central level, the National Social Insurance Agency is in charge of monetary contributions and cash allowances which are paid directly to citizens. The regions are the key actors and they regulate and fund in-kind services. Local health authorities (LHAs) and municipalities are responsible for interventions that are delivered through care providers. The system is highly reliant on publicly funded services, which account for around 85% of service providers’ revenues.

Coordination between different LTC responses is poor or left to local best practices. There are different need assessment systems (LHAs, municipalities, and INPS) which individuals can go through to access the in-kind and cash services they are eligible for, there is no guidance or coordination between the different interventions (Notarnicola et al., 2021).

References:

Notarnicola, E., Perobelli, E., Rotolo, A., & Berloto, S. (2021). Lessons Learned from Italian Nursing Homes during the COVID-19 Outbreak: A Tale of Long-Term Care Fragility and Policy Failure. Journal of Long-term Care, (2021), 221–229. DOI: http://doi.org/10.31389/jltc.73

Last updated: February 4th, 2022   Contributors: Eleonora Perobelli  |  Elisabetta Notarnicola  |  

Japan

Accountability for the system is clear: national framework of revenue raising, eligibility & benefits sits alongside clear role for municipalities as insurers for over 65s and market shapers with some powers to influence provision (Curry et al. 2018).

References:

Curry, N., Castle-Clarke, S. Hemmings, N. (2018). ‘What can England learn from the long-term care system in Japan?’ Nuffield Trust Research Report. Retrieved from: https://www.nuffieldtrust.org.uk/research/what-can-england-learn-from-the-long-term-care-system-in-japan

Last updated: February 10th, 2022

Lithuania

Public LTC expenditure in Lithuania represented 1.0% of Gross Domestic Product in 2016 (source: European Commission: The 2018 Ageing Report).

Last updated: February 10th, 2022

Mauritius

A national policy on the elderly (2001) has been adopted. There is a Protection of Elderly Persons Act 2005, which is aimed at protecting older people from all forms of neglect and abuse. Older people are afforded further rights and protections in the more general National Human Rights Action Plan (2012–2020). The Government of Mauritius oversees and funds many aspects of health and social care for older people. Day care centres offer recreational and educational programmes throughout the country. Those with demonstrated need receive free assistive devices and home health visits (source: https://www.who.int/publications/i/item/9789241513388).

The Residential Care Homes Act 2003 was enacted in order to establish standards and codes of practice and to monitor the quality of care delivered in private homes. Regular inspections of both public and private homes help to ensure that residents receive adequate care (source: https://www.who.int/publications/i/item/9789241513388).

Last updated: January 6th, 2022

Netherlands

The Ministry of Health, Welfare and Sport is responsible for health and all aspects of long-term care (LTC). This includes care homes, social care and nursing care. Since 2015, community care has been devolved to private insurers and municipalities. Regional care offices contract with (WLZ and ZVW) providers and have a responsibility to ensure that there are sufficient services to meet demand. These offices are run by one private care insurer who represents all care insurers active in the region. Municipalities are responsible to provide services under the WMO and have incentives to reduce costs (Bruquetas-Callejo and Böcker, 2021).

References:

Bruquetas-Callejo, M., Böcker, A. (2021) Governmental response to the COVID-19 pandemic in Long-Term Care residences for older people: preparedness, responses and challenges for the future MC Covid 19 Working Paper 11/2021 

Last updated: February 5th, 2022

Seychelles

The Government of the Seychelles has recently unified health and social care in a Ministry of Health and Social Affairs. This new Ministry has an opportunity to strengthen long-term care governance and to develop plans to ensure the quality and financial sustainability of long-term care in years to come (source: https://www.who.int/publications/i/item/9789241513388).

Last updated: January 6th, 2022

Singapore

The Ministry of Health is responsible for governance over the entirety of the health and LTC systems, including setting policy direction, projection of national-level service demand, health and LTC financing, regulatory frameworks, standards, oversight, and coordination of related bodies. There is an Ageing planning Office with responsibility for setting policy direction and implementation for successful ageing across sectors.

In 2018 the Agency for Integrated Care (AIC) was created, within the Ministry of Health, with responsibility for coordinating the delivery of Long-Term Care, enhancing service development and building capacity across health and social care. The AIC is responsible for integrating and coordinating health and care services, case assessment framework and case finding, monitoring and evaluation, case management, referral services, strengthening primary care and community care services and quality of services.

Sources:

Asian Development Bank (2021) Leadership and Governance in Long-Term Care Systems in Asia and the Pacific. ADB Brief. http://dx.doi.org/10.22617/BRF210448-2

Asian Development Bank (2020) Singapore’s Long-Term Care system. Adapting to population aging. ADB.

Last updated: January 6th, 2022

South Africa

South Africa’s Older Persons Act (2006), as well as more general legal and policy instruments, guides national action on long-term care. Coordination and implementation of national policy fall mainly to the Department of Social Development and to the Department of Health. The former administers old-age pensions and finances and oversees residential, community and home-based care, while the latter addresses older people’s health care needs. The Department of Human Settlements plays a lesser role, in that it regulates retirement villages. Overall coordination of long- term care across these Departments is lacking and clinical-level integration of health and social care is limited. Organized long-term care could be expanded to include a broader range of service approaches and settings (source: https://www.who.int/publications/i/item/9789241513388).

Last updated: January 6th, 2022

Spain

As responsibility for administering social assistance has been assumed by all the autonomous communities, the governance of the System for Autonomy and Dependency Care (SAAD) falls into the hands of the bodies established within the framework of the different social service systems. This is dependent upon the structure of each of the autonomous communities. The responsibility of the management of SAAD (both the reception of the application, assessment of the applicant, and the recognition of the situation of dependency and the benefits that can be recognized to each person), corresponds to each autonomous community. The sole exceptions to this is the management of SAAD in the Autonomous Cities of Ceuta and Melilla, which is assumed by the General State Administration through the Institute for the Elderly and Social Services [1].

Delegating the provision of LTC services and benefits to the regions has entailed differences in the access to benefits in different regions. Even though social services are managed, regulated and promoted by the autonomous regions, there are some programmes promoted by the central state, for example  vacations programmes for older people which are partly subsidised by the state (Guillen et al. 2017)

References:

Montserrat Guillen, Ramon Alemany, Manuela Alcañiz, Mercedes Ayuso, Catalina Bolancé, Helena Chuliá, Ana M. Pérez-Marín, and Miguel Santolino (2017). Country Report: Spain. Quality and cost-effectiveness in long-term care and dependency prevention. CEQUA LTC Network. Retrieved from European Network on LTC (CEQUA).

[1] https://www.imserso.es/imserso_01/autonomia_personal_dependencia/saad/ccaa_dt_imserso/index.htm

Last updated: June 20th, 2022

Sri Lanka

The Constitution of Sri Lanka grants all citizens the right to health care, while legislation such as the Protection of the Rights of Elders Act and the Protection of the Rights of Elders (Amendment) Act focus more on elders’ rights and welfare. The National Elderly Health Policy of Sri Lanka was launched in February 2017, and the delivery plan mandated the redevelopment of underutilized inpatient health-care facilities into LTC facilities. The Ministry of Health, together with the established State Ministry of Primary Health Care, Epidemics and COVID
Disease Control, are responsible for policy and formulating LTC services for older persons (source: Country Diagnostic Study on Long-Term Care in Sri Lanka (adb.org).

Last updated: January 6th, 2022

Sweden

A brief history

Prior to the 1950s, adult children were legally responsible for the care of their elderly parents. In the 1950s, 5% of GDP was allocated to care of the elderl, pensions were raised, and children were relieved of their duty of care. For the first time, government-funded institutional care and supported home care were offered to the elderly population in Sweden. In 1982, these provisions were codified into the Social Services Act, guaranteeing the right to claim public service support if needs cannot be met in another way (source: MJIL online).

Current governance

Care in Sweden is a social right: anyone with permanent residency in Sweden is eligible for care, eligibility for which is determined only by assessment of needs (Fukushima et al., 2010). Responsibility for the provision of health and social care is divided between national, regional, and local government. As per The Community Care Reform of 1992, housing and social care needs for older people are the responsibility of local government. The Swedish LTC system is therefore provided, managed and financed by the 290 municipalities, and health and medical care (including at-home palliative care) for older people falls under the responsibilities of the 21 counties and regions. Home care provided by municipalities includes (but is not limited to) help with activities of daily living (ADLs) and personal care, and the provision of meals-on-wheels and various housing adaptations. They provide at-home care and institutional care (including residential care facilities, nursing homes, and group homes for people with dementia (Johansson and Schön, 2017).

More recently, an ‘ageing in place’ policy, based on the philosophy that people should be able to live independently for as long as possible, has dominated the long-term care landscape in Sweden, which has led to the downsizing of institutional resources, and only the most dependent being able to access institutional care (source: European Commission).

In a climate of decreased per capita spending on care for elderly people in a rapidly ageing population, The Local Government Act (1992) allowed municipalities to outsource the provision of care services to private providers (source: Sweden.se). This trend of increased marketization means that there is increased diversity and choice in provider for those in need of long-term care (source: European Commission). Although there has been a proliferation in the provision of care from the private sector, although financing for elder care through taxes still remains generous in Sweden compared to other nations (Meagher and Szebehely, 2010).

References:

Fukushima, N., Adami, J., & Palme, M. (2010). European Network of Economic Policy Research Institutes Assessing Needs of Care in European Nations THE SWEDISH LONG-TERM CARE SYSTEM. www.ceps.eu

Johansson, L. and Schön P. (2017) Country report for Sweden. CEQUA LTC network.

Last updated: February 12th, 2022   Contributors: Daisy Pharoah  |  

England (UK)

The Department of Health and Social Care (DHSC) has overall policy responsibility for setting adult long-term care policy in England and the legal framework, and is accountable to Parliament and public for the performance of the system. The Ministry of Housing, Communities & Local Government oversees the distribution of funding to Local Authorities (LAs) and the financial framework within which local authorities operate.

The Care Act 2014 sets out the responsibilities of 152 LAs in the assessment of social care needs, commissioning and organisation of care, LAs also deliver some services directly, but this is increasingly rare (Source: The Care Act 2014).

The National Health Service (NHS) in England was established by the National Health Service Act of 1946. NHS England is an arm’s-length body of the DHSC and is responsible for arranging the provision of health services in England. The DHSC sets objectives for the NHS through an annual mandate. Since 2013, Clinical Commissioning Groups have been responsible for commissioning hospital and community care for their local populations. In relation to Long-Term Care, nursing and rehabilitation services are mostly provided through the NHS, or funded by the NHS and provided by social care providers for individuals who require nursing in a social care setting or that are considered to have primarily a health need (Source: NHS Continuing Healthcare).

The Care Quality Commission regulates care providers for quality, monitoring and inspecting services to ensure they meet quality and safety standards, and also provide oversight of the financial resilience of the largest and potentially most difficult-to-replace care providers. They publish their findings, including performance ratings.

Although there are initiatives at local and regional levels which aim to integrate health and long-term care services (with varying degrees of success), they remain two separate systems. The NHS White Paper published in February 2021 sets out legislative proposals to establish Integrated Care Systems (Source: Integration and innovation; see question 4.04 for more details).

Last updated: March 8th, 2022

United States

The governance of LTC in the United States is complex and uncoordinated, primarily because of the state variations regarding fund allocation and aging populations. There is a shortage of an appropriate, nationwide system to address the health and social care needs of the population, whilst fragmented and under-resourced systems are common. Federal services tend to be scattered across agencies with minimal collaboration. Various LTC programs are often operating independently (De Biasi et al. 2020).

Federal level attempts at financing reform have either ended in failure or produced small changes to the financing arrangements. Demands for reforms have increased particularly in light of the pandemic (Dawson et al. 2021).

References:

De Biasi, A. et al. Creating an Age-Friendly Public Health System (2020). Innovation in Aging, Volume 4, Issue 1, https://doi.org/10.1093/geroni/igz044

Dawson, W. D., Boucher, N. A., Stone, R., & Van Houtven, C. H. (2021). COVID-19: The Time for Collaboration Between Long-Term Services and Supports, Health Care Systems, and Public Health Is Now. The Milbank Quarterly, 99(2), 565–594. https://doi.org/10.1111/1468-0009.12500

Last updated: February 11th, 2022

1.03. Long-term care financing arrangements and coverage

Overview

Introduction

Financing refers to mechanisms that are used to raise funds (or resources) for long-term care, and to allocate those resources to particular groups or individuals. LTC financing discussions tend to focus on the sustainability of current financing arrangements, given rapidly growing demand due to population ageing and the predicted increase in the frail older people with long-term care needs.

Drivers of LTC spending

Expenditure on LTC is driven by a range of factors that relate to both demand (e.g. population size and structure, health status, individual and national income) and supply of LTC services (policy/institutional settings, technological advance) (source: The 2021 Ageing Report).  Differences in social values may also influence the level of public LTC spending as well as the distribution of support, for example, between users with and without informal carers. Moreover, in most OECD countries, the drive towards community-based care translates to higher public coverage of home-based rather than inpatient LTC.

Overview of LTC expenditure

Estimating LTC financing accurately and robustly is very difficult as very few countries have information systems that record all out-of-pocket spending on long-term care services. However, based on the available data, in most countries long-term care expenditure represents a small share of Gross Domestic Product (GDP). In 2017 total spending on public LTC across OECD countries, was estimated to account for 1.5% of GDP or 730 American dollars (USD) per capita (after adjusting for differences in price levels). This ranged from less than 0.2% of GDP in Greece, and the Slovak Republic to a high of around 4% of GDP in the Netherlands, 3% in Sweden and 2.5% in Denmark. In the US and Republic of Korea the spending was about 1% of GDP, in Canada 1.5%, followed by Germany (2.2%) and the UK and France (2.5% in each).

Countries with the highest LTC spending overall i.e. Sweden and the Netherlands – are also nations where the public share of LTC financing is the highest (at 92-93%). On average across the OECD in 2017, 76% of inpatient LTC was financed by public schemes compared to 91% for home-based care, the gap was widest in Austria, Korea and the United Kingdom, where there was a 30-percentage point difference or more.

Universal LTC coverage

Systems with universal LTC coverage tend to provide publicly funded nursing and personal care to all individuals assessed as eligible due to their care-dependency status. They may apply primarily to the older population (e.g. in Japan, Korea), or to all people with assessed care-need regardless of the age-group (e.g. the Netherlands). Universal coverage systems are mostly found in Europe, particularly the Nordic countries such as Sweden, Finland, Denmark although in those countries provision/access often depends on local area and municipal availability of services.

Means-tested LTC systems

Means-tested systems operate in such countries as England, US as well as in many Eastern European countries where free LTC services are available for people with greatest needs and with lowest financial needs, although some services may be universal, needs tested (e.g. such as reablement in England). In some countries co-payments have been introduced, which are either means-tested e.g. in parts of Canada, Japan, France. The rate of co-payments is often means-tested and can vary from 10% to 90%, although it can be a set amount as in parts of Canada.

LTC insurance

Some countries have LTC insurance which provides a universal coverage (namely Germany, South Korea). LTC insurance in Israel is income-tested (it excludes highest earners) and is available only for home-based personal care.

Reliance on unpaid care and its impact on LTC financing arrangements

In practice, the largest share of LTC across the world is provided as an “in kind” resource, by unpaid carers such as family members and friends (see section 1.11 of this report for more details on unpaid carers).  Family carers in some countries, for example Denmark, can be paid by the government for short periods of time. Informal carers may also receive income transfers and, possibly, some payments from the person receiving care. In Low and Middle Income Countries there is little availability of formal care and, while expenditure measured as a share of GDP appears relatively low, families bear very substantial costs of care with little support (see for example, Govia et al. 2021).

References:

Govia, I.; Robinson, J.N.; Amour, R.; Stubbs, M.; Lorenz-Dant, K.; Comas Herrera, A.; Knapp, M. (2021). ‘Mapping Long-Term Care in Jamaica: Addressing an Ageing Population. Sustainability  13, 8101. https://
doi.org/10.3390/su13148101

International reports and sources

WHO sources:

WHO’s Report (2021) Pricing long-term care for older persons;  includes case studies on Australia, France, Germany, Japan, Republic of Korea, the Netherlands, Spain, Sweden and the USA

WHO (2015) Aging and Health report (who.int)

OECD sources

OECD (2020). LTC-Spending-Estimates-under-the-Joint-Health-Accounts-Questionnaire.pdf (oecd.org);

OECD (2020). The effectiveness of social protection for long-term care in old age;

OECD (2011) Public Long-term Care Financing Arrangements in OECD Countries. Help Wanted

EU publications

Several reports can be found about LTC financing and coverage across EU Member States:

Joint Report on Health Care and Long-Term Care Systems and Fiscal Sustainability – Country Documents 2019 Update

Other sources

https://www.degruyter.com/Aging in Europe.

Australia

Long-Term Care Financing mechanisms

Australia has universal public health care through Medicare. The Australian government subsidizes aged care services so anyone who received aged care is eligible for financial support. In 2018-2019, $27.0 billion was spent on aged care, $19.9 billion of which came from the Australian Government (Royal Commission, 2020a).

Reliance on unpaid carers

There is significant reliance on unpaid (mostly family) carers in the community, to reduce the need for formal care. In 2018, there were around 428,500 unpaid primary carers providing support to someone aged 65 years or older (sources: health.gov; Care, Dignity and Respect report; Parliament of Australia; myagedcare.gov).

Family carers have access to shared care planning tools. Professional carers are also increasingly asked to collaborate with family carers, providing skills training and directing family carers to the services available for them (source: OECD).

Public Long-Term Care coverage:

In Australia 80 per cent of older people will access some form of government funded aged care service before death (2012-2014) (AIHW, 2018).

In 2019-20, over one million people received support from aged care services, around 840,000 used the Commonwealth Home Support Programme, and around 245,000 people lived in residential aged care facilities at some point during the year (AIHW, 2021).

Co-payments

People who use aged care are expected to contribute in the form of co-payments and means tested fees. People receiving aged care services contributed $5.6 billion to the cost of their aged care in 2018–2019 (Royal Commission, 2020a)

Aged care homes are subsidised by the Australian government. The subsidies are paid directly to the aged care home and the amount of funding that a home receives is based on an assessment of individual needs by the home using a tool called the Aged Care Funding Instrument (ACFI) and how much an individual can afford to contribute to the cost of their care and accommodation (using a means assessment).

Access to publicly funded aged care

Aged care services are rationed and access is determined by where people live, their needs, and availability of services. The Royal Commission into Aged Care Quality and Safety highlighted that in practice there is no universal entitlement to aged care as services are strictly rationed and access is determined by where people live, their needs, and availability of services (Royal Commission, 2020b).

Public spending on Long-Term Care

In 2019-20 government spending on LTC in Australia was estimated to be $21.5 billion, 65% on residential aged care and the remainder on home care and support or other forms of care.  This is equivalent to 1.2% of Gross Domestic Product (Treasury, 2021)

References:

Australian Institute of Health and Welfare (2018) Cause of death patterns and people’s use of aged care: A Pathway in Aged Care analysis of 2012–14 death statistics. Cat. no. AGE 83. Canberra: AIHW.

Australian Institute of Health and Welfare (2021) GEN Aged Care Data https://www.gen-agedcaredata.gov.au

Deloitte Access Economics (2020) Commonwealth Home Support Programme Data Study. Department of Health, Australia. https://www.health.gov.au/sites/default/files/documents/2021/06/commonwealth-home-support-programme-data-study_0.pdf

Royal Commission into Aged Care Quality and Safety (2020a) Financing Aged Care, consultation paper 2. Commonwealth of Australia. https://agedcare.royalcommission.gov.au/sites/default/files/2020-06/consultation_paper_2_-_financing_aged_care_0.pdf

Royal Commission into Aged Care Quality and Safety (2020b) Aged care and COVID-19: a special report. Commonwealth of Australia. https://agedcare.royalcommission.gov.au/sites/default/files/2020-12/aged-care-and-covid-19-a-special-report.pdf 

Treasury (2021) 2021 Intergenerational Report. Australian Government. https://treasury.gov.au/publication/2021-intergenerational-report

Last updated: February 9th, 2022

Austria

In 2016 public spending on LTC represented 1.9% of Gross Domestic Product (European Commission, 2018).  Long-term care is financed in Austria through a combination of public-sector taxed- based support and out-of-pocket payments by care users. The responsibility for long-term care financing is divided amongst the federal government and the federal states. The federal government is responsible for funding the long-term care allowance (Pflegegeld) and various measures for supporting informal carers, while the federal states cover benefits in-kind (i.e. care services) and are responsible for financing social assistance when a care user cannot cover their costs of care.  Although the federal states are in charge of in-kind services and social assistance, as the federal government is responsible for collecting taxes, the federal government provides transfers to the federal states to cover these costs through the general fiscal equalisation scheme and the long-term care funds (Pflegefonds) (Fink, 2018).  Since 2011, there is a LTC fund (“Pflegefonds”) for the federal government to redistribute to the states and municipalities to help cover home care and nursing home services, as well as palliative and hospice care (Bachner et al., 2018).

The long-term care allowance (Pflegegeld) is a key aspect of the Austrian long-term care system, with over 467,000 beneficiaries in 2020 amounting to €2.71 billion (source: http://www.statistik.at/web_de/statistiken/menschen_und_gesellschaft/soziales/sozialleistungen_auf_bundesebene/bundespflegegeld/index.html). The care allowance is intended to be a contribution towards the cost of care to cover care-related expenses, whether it be formal care services, either privately or publicly provided, or to cover informal care (i.e. routed wage) provided by relatives. Care allowance beneficiaries may use the allowance however they see fit, with no oversight/control on how the allowance is used. The allowance consists of seven levels, characterized by the number of hours needed per month for home help and personal and nursing-related care tasks. To receive the care allowance, the recipient must fulfill several requirements: 1) be in need of support and help for more than 6 months because of a physiological, cognitive or mental health impairment or an impairment of the senses and 2) need support for at least 65 hours per month. To obtain the care allowance, the recipient must first submit a claim to the pension insurance institution before being visited by a certified doctor or nurse who assess their needs regarding (instrumental) activities of daily living. The federal government also finances support for informal carers, through a number of avenues. In 2016, support for informal care amounted to €72.8 million, primarily covering the social insurance of informal carers (€49.2 million), followed by for respite care (€11 million), for care leave (€10.7 million) and finally for quality assurance (€1.9 million) (Schrank, 2017).

In 2019, gross expenditure on LTC services amounted to €4.2 billion, primarily covered by the federal states and municipalities (59%), followed by out-of-pocket pockets by care users and their families (36%) and the rest (5%) from other sources (i.e. contributions by health insurances). Approximately 84% of this went towards (semi-)residential care facilities, and the rest towards mobile care services (16%) (source: http://www.statistik.at/web_de/statistiken/menschen_und_gesellschaft/soziales/sozialleistungen_auf_landesebene/betreuungs_und_pflegedienste/index.html).

 

References:

Bachner, F. et al. (2018), ‘Austria. Health System Review’ Health Systems in Transition, Vol. 20, No.3. European Health Observatory. Accessed at: HiT-20-3-2018-eng.pdf (who.int)

European Commission (2018), ‘The 2018 Ageing Report. Economic & Budgetary Projections for the 28 EU Member States (2016-2070)’. Luxembourg: Publications Office of the European Union

Fink, M. (2018). ‘ESPN Thematic Report on Challenges in long-term care. Austria’. Brussels, https://ec.europa.eu/social/BlobServlet?docId=19837&langId=en

Schrank, S. (2017), ‘Reforms in long-term care: The Austrian long-term care system : Current challenges and reforms’. Accessed at: European Centre for Social Welfare Policy and Research

Last updated: February 2nd, 2022   Contributors: Cassandra Simmons  |  

Belgium

In 2016 public spending on long-term care was estimated to represent 2.3% of Gross Domestic Product (European Commission, 2018).

Long-term care is part of an integrated system of health care, complemented by social service provision. Medical care is financed by the federal health insurance system, whereas personal care is organized and financed by the regional governments. Cash benefits only play a small role in the system. Co-payments are means-tested and subject to a maximum limit. Additionally, Flanders has a compulsory social insurance system specifically for non-medical help services that provides cash benefits to people with reduced self-sufficiency (European Commission, 2019).

References:

European Commission (2018), ‘The 2018 Ageing Report. Economic & Budgetary Projections for the 28 EU Member States (2016-2070)’. Luxembourg: Publications Office of the European Union

European Commission (2019), Austria Health Care & Long-Term Care Systems. An excerpt from the Joint Report on Health Care and Long-Term Care Systems & Fiscal Sustainability

Last updated: February 3rd, 2022

Brazil

Some public LTC services are provided through the Unified Social Assistance System, this is means-tested and targeted to people without family support, and increasing availability of private care options (source: https://ltccovid.org/wp-content/uploads/2020/05/COVID-19-Long-term-care-situation-in-Brazil-6-May-2020.pdf).

Last updated: November 23rd, 2021

Bulgaria

In 2016 public LTC represented 0.4% of Gross Domestic Product in Bulgaria (European Commission, 2018). People in need of care are covered by social assistance, which is managed at municipal level and by disability benefits (e.g. as a supplement to pensions for older people). The country was reported in need to develop governance, financing and regulatory framework for LTC (European Commission, 2019).

 

References:

European Commission (2018), ‘The 2018 Ageing Report. Economic & Budgetary Projections for the 28 EU Member States (2016-2070)’. Luxembourg: Publications Office of the European Union

European Commission (2019), Bulgaria Health Care & Long-Term Care Systems. An excerpt from the Joint Report on Health Care and Long-Term Care Systems & Fiscal Sustainability

Last updated: February 3rd, 2022

British Columbia (Canada)

In total, LTC services in British Columbia  cost $2 billion CAD per year, with the majority, $1.3 billion CAD, spent in the contracted sector (source: https://www.seniorsadvocatebc.ca/app/uploads/sites/4/2020/02/ABillionReasonsToCare.pdf).

LTC services are available through publicly subsidized and privately funded services. Some publicly subsidized home and community care services are provided free of charge. For example, British Columbia has the highest recommended funded hours per resident day at 3.36 hours, higher than the Canadian average of 3.30. For other services, the cost is shared between the Ministry of Health and the person receiving services. The amount paid by individuals receiving care is called the client rate. Client rates are determined by BC’s health authorities and may be calculated based on income or set as a fixed rate, depending on the type of care received. For most LTC facilities, the person receiving care pays up to 80% of their income taxation and can also apply for a reduced rate due to financial hardship (source: https://www2.gov.bc.ca/gov/content/health/accessing-health-care/home-community-care/who-pays-for-care; https://rsc-src.ca/sites/default/files/LTC%20PB%20%2B%20ES_EN_0.pdf).

Unpaid carers (commonly referred to as family caregivers in Canada) are represented by the Family Caregivers of British Columbia (FCBC), a provincial non-profit. FCBC represents over 1 million people in British Columbia. Although there is no data yet on how many family caregivers are present in the province. FCBC provides access to information and education and acts as a voice for family caregivers when liaising with other stakeholders in the health and social sector (source: https://www.familycaregiversbc.ca/).

LTC residents and individuals receiving continuous care in the community are charged a portion of their after-tax income. Individuals may apply for a reduction in rates due to financial hardship. For the most part, anyone requiring care should be able to receive it (source: https://www2.gov.bc.ca/gov/content/health/accessing-health-care/home-community-care/who-pays-for-care).

Last updated: February 11th, 2022

Cyprus

Public LTC expenditure in Cyprus was estimated to represent 0.3% of the Gross Domestic Product (source: European Commission: The 2018 Ageing Report).

Last updated: February 10th, 2022

Czech Republic

Public LTC expenditure in the Czech Republic was estimated to represent 1.3% of Gross Domestic Product (European Commission, 2018). Some LTC services such as home care are covered by the health insurance system (if indicated by a general practitioner). Institutional care costs are mostly paid by out-of-pocket payments (European Commission, 2019).

References:

European Commission (2018), ‘The 2018 Ageing Report. Economic & Budgetary Projections for the 28 EU Member States (2016-2070)’. Luxembourg: Publications Office of the European Union

European Commission (2019), Czech Republic Health Care & Long-Term Care Systems. An excerpt from the Joint Report on Health Care and Long-Term Care Systems & Fiscal Sustainability

Sowa-Kofta, A., Wija, P. (2017). Czech Republic: Emerging policy developments in long-term care. CEQUA country report

Last updated: February 15th, 2022

Denmark

Public sending on Long-Term Care as % of Gross Domestic Product (GDP):

In 2016 Denmark spent 2.5% of GDP on publicly funded LTC which was almost twice of the EU average (WHO, 2019).

Approach to public funding for LTC and eligibility:

Municipalities are responsible for allocating resources; they obtain funding from the national government, local taxes and equalization money from other municipalities. There are no co-payments for home-based care services  such as cleaning and personal care, although individuals who use private providers can buy additional services. Eligibility for LTC is based purely on needs assessment carried out by the municipalities, principle of free and equal access applies, regardless of income, wealth, age or household situation. There are no thresholds or minimum dependence required for in-kind or cash benefits. Needs assessment is multidimensional and captures a wide range of aspects related to a person’s situation and well-being (WHO, 2019).

It has been estimated that 16% of the total population provided unpaid care at least once a week in 2016 (WHO, 2019). The availability, or not, of informal care is not considered as a criterion for assessing needs and entitlements. Unpaid carers experience less burden and are less likely to report difficulties in reconciling work and caregiving compared with the rest of the EU (Rodrigues at al., 2013).

References:

Rodrigues, R., Schulmann, K., Schmidt, A., Kalavrezou, N. & Matsaganis, M. (2013). The indirect costs of long-term care. European Centre for Social Welfare Policy: Research Note.

WHO (2019), ‘Denmark: Country case study on the integrated delivery of long-term care’. Accessed at: https://www.euro.who.int/2019/denmark-country-case-study-on-the-integrated-delivery-of-long-term-care-2019).

Last updated: February 15th, 2022

Estonia

In 2016, public LTC expenditure in Estonia was estimated to represent 9.9% of Gross Domestic Product (source: European Commission: The 2018 Ageing Report).

Last updated: February 10th, 2022

Finland

LTC services are part of the universal health and social care system in Finland. The state government and municipalities are the major funders of LTC care, however despite most costs being covered by taxes, there are user fees. For example, in 2014, older people using care services paid 18.5% of the costs of care (source: http://urn.fi/URN:ISBN:978-952-302-236-2). User fees are defined by the ability to pay.

Unpaid care from families is a major part of the LTC system, and it is argued that reforms of the care system in the past 30 years have resulted in increased reliance on families, who have been provided with support through cash-for care schemes (Ylinen et al., 2021).

According to the European Union’s Ageing report 2021, public LTC expenditure in Finland represented 2.0% of Gross Domestic Product in 2019.

References:

Ylinen, T., Ylinen, V., Kalliomaa-Puha, L. Ylinen, S. (2021), ‘Governmental response to the COVID-19 pandemic in Long-Term Care residences for older people: preparedness, responses and challenges for the future: Finland’, MC COVID-19 working paper 04/2021. http://dx.doi.org/10.20350/digitalCSIC/13692

Last updated: February 10th, 2022

France

In 2016 public LTC expenditure in France was estimated to represent 1.7% of Gross Domestic Product (https://ec.europa.eu/info/sites/info/files/economy-finance/ip079_en.pdf).

LTC funding is fragmented and divided across a complex web of actors, at a local level (local authorities), health insurance (CNAM), not-for-profit (mutuelles) and private insurance policies, National Solidarity Fund for Autonomy (CNSA), central government, pensions, municipalities and individuals (source: https://www.alzheimer-europe.org/Policy/Country-comparisons/2007-Social-support-systems/France)

In terms of public spending, costs are shared between: National Solidarity Fund for Autonomy (CNSA), regions, the state, which in 2011 contributed approximately 9.7bn€, health insurance (CNAM), which contributed 11bn€, accommodation costs 7.5bn€ adding to a total of 21bn€, which amounted to 1.05% of GDP. Including the costs of household contributions would brought total spending to 28bn€, 1.41% of GDP.

A market for private insurance for long-term care has developed as contributions are tax-free and is reported to be one of the largest – although take up is still relatively low.

The country’s LTC policy is based on cash-for-care scheme called the Allocation Personalisee a l’Autonomie (APA), which provides some assistance to people over 60 with care needs above a government determined threshold of need (AGGIR 1-6) and is concerned mostly with homecare. In 2018 8% of people over 60s were APA beneficiaries. APA is means-tested based on taxable income and some assets. There are high levels of out-of-pocket payments, individuals pay up to 90% of the care costs. For example, whereas individuals with below a monthly income of €800 do not contribute to the funding of the care, those with income of above €2945 contribute 90% of the care costs. Moreover, the level of the allowance depends on the need level.  Median cost of a room in a care home in 2018 was 1977€.

Last updated: February 15th, 2022   Contributors: Camille Oung  |  Alis Sopadzhiyan  |  

Germany

Financing

The social LTC insurance is financed through equal contributions between employer and employees. Childless people pay a slightly higher contribution rate than those with children (3.30% of gross wages versus 3.05%) (Lückenbach et al., 2021). Retirees contribute between 3.05% and 3.30% of their pensions (Milstein, Mueller & Lorenzoni, 2021, p.83).

Financing of private compulsory LTC insurance is risk- rather than income-related, with premiums depending on health status and age. However, caps are in place to prohibit that maximum contribution rates exceed those of the social LTC insurance. As with the social LTC insurance, employers co-pay up to half of the insurance premium (Milstein, Mueller & Lorenzoni, 2021, pp. 83-84).

Coverage of the population

The Long-Term Care Insurance in Germany is statutory. It requires enrollees in both statutory sickness funds and private health insurance to also be enrolled in LTCI funds (Milstein, Mueller & Lorenzoni, 2021).

The provision of LTC insurance is needs- but not means-tested (Milstein, Mueller & Lorenzoni, 2021).  People with LTC needs receive an assessment in which their care needs are classified into five grades. Grade 1 reflects lower needs, while grade 5 represents severe needs. The assignment for the overall grades is based on the assessment of six core areas: mobility, cognitive and communicative abilities, behaviour and psychological issues, ability to take care for oneself independently, handling of illness and therapy as well as illness related strain, and therapy and organisation of everyday life and of social contacts. The grade of support provided varies between the different levels of care need (Nadash, Doty & von Schwanenflügel, 2018).

Coverage of costs

The LTC insurance is designed to cover only a share of the LTC-related costs. With regards to residential care, people in need of long-term care have to pay up to €2,400 per month out of pocket. This includes costs for food and the resident’s room. Costs vary substantially between the different Länder. While the private share of costs for care in residential care settings amounts to more than €1,000 in Baden-Württemberg, they are less than €450 in Thuringia (Sozialpolitik-aktuell.de, 2020)

Where individuals/families cannot shoulder these costs, this will be covered through social security mechanisms. In 2019, 302,000 long-term care recipients depended on meats-tested social assistance support; most of them (250,000) were living in care homes (Rothgang & Müller, 2021).

References

Eggert, S., Teubner, C., Budnick, A., Gellert, P. & Kuhlmey, A. (2020) Pflegende Angehörige in der COVID-19-Krise: Ergebnisse einer bundesweiten Befragung. Available at: https://www.zqp.de/wp-content/uploads/ZQP-Analyse-Angeh%C3%B6rigeCOVID19.pdf (Accessed 31 January 2022)

Lückenbach, C., Klukas, E., Schmidt, P. H. and Gerlinger, T (2021), ‘Governmental response to the COVID-19 pandemic in Long-Term Care residences for older people: preparedness, responses and challenges for the future: Germany’, MC COVID-19 working paper 06/2021 http://dx.doi.org/10.20350/digitalCSIC/13694 Available at: https://drive.google.com/file/d/1-RDnqErydbuGGNXlM8WaFB2oSTRKStTc/view (Accessed 31 January 2022)

Milstein, R., Mueller, M. & Lorenzoni, L. (2021) Case study – Germany. In WHO Centre for Health Development (?Kobe, Japan)?, Organisation for Economic Co-operation and Development, Barber, Sarah L, van Gool, Kees, Wise, Sarah. et al. (?2021)?. Pricing long-term care for older persons. World Health Organization. https://apps.who.int/iris/handle/10665/344505. License: CC BY-NC-SA 3.0 IGO

Nadash, P., Doty, P. & von Schwanenflügel (2018) ‘The German Long-Term Care Insurance Program: Evolution and Recent Developments’, The Gerontologist, 58(3), pp.588-597. https://doi.org/10.1093/geront/gnx018

Rothgang, H. & Müller, R. (2021) Barmer Pflegereport 2021 – Wirkungen der Pflegereformen und Zukunftstrends. Schriftenreihe zur Gesundheitsanalyse – Band 32. BARMER: Berlin. Available at: https://www.barmer.de/blob/361516/2ad4e5f56c47cb7b7e914190f9fae62f/data/barmer-pflegereport-2021-band-32-bifg.pdf (Accessed 03 February 2022).

Sozialpolitik-aktuell.de (2020) Hohe Eigenanteile bei der Heimpflege – mit erheblichen regionalen Unterschieden. Available at: https://www.sozialpolitik-aktuell.de/files/sozialpolitik-aktuell/_Politikfelder/Gesundheitswesen/Datensammlung/PDF-Dateien/abbVI49_Thema_Monat_02_2020.pdf (Accessed 3 February 2022).

Last updated: February 12th, 2022   Contributors: Klara Lorenz-Dant  |  Thomas Fischer  |  Kerstin Hämel  |  

Greece

In 2016 public expenditure on LTC was estimated to represent 0.1% of Gross Domestic Product (source: European Commission: The 2018 Ageing Report).

Last updated: February 10th, 2022

Hungary

In 2016 public LTC expenditure in Hungary was estimated to represent 0.9% of Gross Domestic Product (source: European Commission: The 2018 Ageing Report).

Last updated: February 10th, 2022

Iceland

In 2018 total LTC expenditure in Iceland was estimated to represent 1.7% of Gross Domestic Product (source: https://stats.oecd.org/Index.aspx?QueryId=30140).

Last updated: February 10th, 2022

India

Public funding for LTC is very limited, but there are a few public benefit schemes such as disability benefits and pension schemes that offer modest support. Most formal LTC is paid for through out of pocket payments (source: https://ltccovid.org/wp-content/uploads/2020/05/LTC-COVID-situation-in-India-30th-May.pdf).

Last updated: August 2nd, 2021

Israel

In 2016 the total LTC expenditure in Israel was estimated to represent 0.6% of Gross Domestic Product (source: OECD). The National Insurance (NI) is the primary public funder of home-based long-term care services and does so through the Long-Term Care Insurance Program (LTCIP).  LTCIP is income-tested to exclude the highest income earners. As of 2014, the NII subsidizes the care of approximately 160,000 seniors at the cost of NIS 5.31 billion (appx. 1.2 bill GBP). Assisted living (e.g. LTCFs) is primarily funded by the Ministries of Health and of Labour and Social Affairs, and accounts for 14% of publicly-funded LTC services. Complex inpatient care is funded by the health system and accounts for 6% of public LTC funds. Public funds account for 55% of LTC services, with the remaining 45%  privately funded (sources: Taub Centre)

Home care and community-based services are the main LTC service for older people in Israel. At the beginning of 2020, 220,830 individuals (of retirement age) were eligible to receive publicly financed LTC services at home (sources: Tsadok-Rosenbluth et al. 2020; National Insurance Institute of Israel).

There are also geriatric hospitals and sheltered housing facilities, many of which are owned and managed by the coordinated governmental healthcare system via the four non-profit health plans (HP’s). These provide long-term geriatric treatment (including wards for older people with cognitive disabilities) as well as departments for active geriatric care (including complex nursing, hospice, and rehabilitative care) (source: Tsadok-Rosenbluth et al, 2021); they became the primary source for concern and emergency response during the COVID-19 pandemic.

LTC insurance in Israel is universal ,and LTC services are substantially funded by private and out-of-pocket expenditure (45%). In April 2018, as part of the LTC reform, the National Insurance launched a program to entitle home-based unpaid caregivers to long-term care benefits. Made a national policy in August 2019, family members can be paid as caregivers under certain conditions; statistics on the implementation of the policy are unavailable (source: Adva Centre).

References:

Tsadok-Rosenbluth, S, Leibner G, Hovav B, Horowitz G and Brammli-Greenberg S (2020) The impact of COVID-19 on people using and providing Long-Term Care in Israel. Report available at LTCcovid.org, International Long- Term Care Policy Network, CPEC-LSE, 4 May 2020. Retrieved from: Article from ltccovid.org

Tsadok-Rosenbluth, S, et al. (2021). Centralized Management of the Covid-19 Pandemic in Long-Term Care Facilities in Israel. Journal of Long-Term Care, (2021), pp. 92–99. DOI: https://doi.org/10.31389/jltc.75

Last updated: February 11th, 2022   Contributors: Sharona Tsadok-Rosenbluth  |  

Italy

In 2020 public Long-Term Care (LTC) expenditure in Italy was estimated to represent 1.9% of Gross Domestic Product; 74.1% of this expenditure is devoted to over 65 people (Fost et al., 2021).  Public expenditure on LTC includes three components: 1) LTC  services to dependent people provided by the public health 2) the social component of LTC  provided by municipalities and  3) attendance allowances. The social component of LTC are generally means-tested, access to services are based on needs-assessment but also on income levels (European Commission, 2016).

The bulk of LTC is provided by unpaid, family carers. Also, a large share of home care is provided by privately employed, primarily migrant care workers. The annual estimated expenditure in this type of household-based care is €17.000 per family. Almost 60% of these care workers are employed totally or partially irregularly, with an annual average estimated expenditure of €11.000 (Fosti, at al., 2021).

Access criteria to LTC services are determined at the regional level (with a high level of heterogeneity) and Local Health Authorities (LHA) can established further criteria. Hence, it is very difficult to establish an overreaching picture of access and affordability for these services. The only major intervention that is subject to nationally established criteria is the companion allowance (CA), a cash transfer given to all those with a very severe disability regardless income or other personal features.

Practically all LTC services are based on co-payments and, given the fact that the coverage rate is relatively low, waiting lists are common, although there are no official data on the size of the phenomenon (European Commission, 2021).

References:

Barbarella F, Casanova G, Chiatti C and Lamura G (2018), ‘Italy: emerging policy developments in the long-term care sector’. CEQUA LTC network report. Retrieved from Italy Country Report

European Commission (2016), ‘Italy – Health Care & Long-Term Care Systems. Excerpt from Joint Report on Health Care and Long-Term Care Systems & Fiscal Sustainability’. Institutional Paper 37, volume 2, country documents. Economic and Financial Affairs, Economic Policy Committee. Retrieved from update_joint-report_it_en.pdf (europa.eu)

European Commission (2021). ‘2021 Long Term Care in the EU’ Joint report prepared by the Social Protection Committee (SPC) and the European Commission (DG Empl). Retrieved from: Publications catalogue – Employment, Social Affairs & Inclusion

Fosti G, Notarnicola E, Perobelli E (2021) Le prospettive per il settore socio-sanitario oltre la pandemia. Rapporto Osservatorio Long Term Care 3. Egea. CERGAS. Università Bocconi. Retrieved from: 2019-2020 report Le prospettive per il sistema socio-sanitario oltre la pandemia.

Ministero dell’Economica e delle Finanze (2021) Le tendenze di medio-lungo periodo del sistema pensionistico e socio sanitario. Rapporto n.22.

Last updated: February 4th, 2022   Contributors: Eleonora Perobelli  |  Elisabetta Notarnicola  |  

Japan

Japan has a relatively well-funded system, based on mix of tax, social insurance and individual co-payments. Revenue raising mechanisms are flexible to allow for extra top ups in difficult times. However, the system is under financial pressure due to the rapid rise in need as a result of rapid ageing. Its generosity has been reduced over time over affordability concerns (Curry et al. 2018)

On being assessed as needing care by the Long-Term Care Insurance system (LTCI), service users are assigned a monthly in-kind budget to spend on care according to their level of need. Service users pay a co-payment on accessing services which ranges from 10% for most people to 30% for most affluent. Co-payments are capped at fixed monthly level on a sliding scale according to income. People can opt to buy more care beyond assigned level at 100% cost, but care packages are thought to be generous and few people top up beyond their allocated budget. The re-imbursement for care services from the LTCI does not cover room or board.

The 50% of the funding for the LTCI system is from mandatory insurance contributions from all residents aged 40 and older and the rest is from taxation: 25% from the national government and 12.5% each from the prefectural and municipal governments. The insurance rates are set by each municipality on the basis of the insured resident’s income levels (Estevez-Abe et al. 2021).

There was concern that people would not take the in-kind benefits up due to stigma attached to using public care provision (traditionally it has always been a family duty), however the design and generosity of the system quickly changed societal views (Curry et al. 2018).

References:

Estévez-Abe, M., Hiroo Ide. (2021). “COVID-19 and Japan’s Long-Term Care System.” LTCcovid.org, International Long-Term Care Policy Network, CPEC-LSE, February 27, 2021. Retrieved from: ltccovid.org

Curry, N., Castle-Clarke, S. Hemmings, N. (2018). ‘What can England learn from the long-term care system in Japan?’ Nuffield Trust Research Report. Retrieved from: https://www.nuffieldtrust.org.uk/research/what-can-england-learn-from-the-long-term-care-system-in-japan

Last updated: February 15th, 2022

Latvia

Public LTC expenditure in Latvia was estimated to represent 0.4% of Gross Domestic Product (source: European Commission: The 2018 Ageing Report). The availability of unpaid carers is considered during assessment for formal provision of home care, consequently, home care is provided mostly for people living alone who have no help from family or close neighbours (Calite-Bordane, 2017).

References:

Calite-Bordane, D. (2017). ‘Latvia: Emerging policy developments in long-term care’. Retrieved from: CEQUA Latvia Country report

Last updated: February 16th, 2022

Luxembourg

Public LTC expenditure in Luxembourg was estimated to represent 1.3% of Gross Domestic Product in 2016 (source: European Commission: The 2018 Ageing Report).

Last updated: February 10th, 2022

Netherlands

Public expenditure on LTC as percentage of GDP was estimated to be 3.5% in 2016, more than twice the European Union average of 1.6% (EU Commission, 2018). Seventy five percent of spending is allocated to residential care. Private expenditure on LTC (co-payments and out of pocked payments) is relatively low. However, in residential care, residents have to contribute to their board and accommodation. Co-payments have increased considerably for those with higher incomes. Cash for care has been a recent addition for people receiving community care, but in 2016, only 4.7% of recipients of home care aged 65 and over had a personal budget. Benefits are universal but needs tested. There has been a marked shift over time from institutionalisation to community care, with substantial involvement from patient and client organisations. There has been another more recent shift from collective (state) responsibility to individual responsibility and self-reliance. Involvement of unpaid carers, especially families, is now part of the official policy. This however goes against the widespread view that the state should take responsibility for older people in need of care. It is also recognised that this shifts the burden of care back to women (Bruquetas-Callejo and Böcker, 2021).

References:

EU Commission (2018). The 2018 Ageing Report Economic & Budgetary Projections for the 28 EU Member States (2016-2070)

Bruquetas-Callejo, M., Böcker, A. (2021) Governmental response to the COVID-19 pandemic in Long-Term Care residences for older people: preparedness, responses and challenges for the future MC Covid 19 Working Paper 11/2021 

Last updated: February 1st, 2022

Norway

In 2016 public LTC expenditure in Norway was estimated to represent 3.7% of Gross Domestic Product (source: European Commission: The 2018 Ageing Report).

Last updated: February 10th, 2022

Poland

Public LTC expenditure in Poland was estimated to represent 0.5% of Gross Domestic Product in 2016 (source: European Commission: The 2018 Ageing Report). Public care for dependent older people is provided through health care sector, which includes cases of dependency or palliative care requiring a range of medical and rehabilitation services, and the social care sector, which includes care for dependent older people who are in a socially difficult situation (i.e. those who live alone, come from dysfunctional families, or are poor). Care for older dependent people is predominantly a family domain in Poland. In most cases, caregivers are family members who – in case of care for older dependent people – receive little or no financial remuneration for the care provided. In wealthier households, family carers may be supported by immigrants employed informally (Golinowska et al. 2017).

References:

Golinowska, S., Sowa-Kofta, A. (2017) ‘The Polish policy landscape. Retrieved from CEQUA: Poland Country Report

Last updated: February 10th, 2022   Contributors: Joanna Marczak  |  Agnieszka Sowa-Kofta  |  

Portugal

In 2016, public LTC expenditure in Portugal represented an estimated 0.5% of Gross Domestic Product (source: European Commission: The 2018 Ageing Report).

Last updated: February 10th, 2022

Republic of Korea

Total LTC expenditure in Korea represented 1.0% of Gross Domestic Product (GDP) in 2019 (source: https://stats.oecd.org/Index.aspx?QueryId=30140), of this, expenditure through the public LTC Insurance system accounts for 0.37% of GDP (source: https://www.sciencedirect.com).

A universal, public LTC insurance (LTCI) for the older population was introduced in 2008, and it requires no means-test (The-Long-Term-Care-COVID19-situation-in-South-Korea-7-May-2020.pdf ). Services include institutional and home/community care (COVID_LTC_Report-Final-20-November-2020.pdf).

In terms of eligibility, the intended beneficiaries of the system are all Koreans, it mainly targets older people (age 65+).  In 2018 around 8.8 % of the total older population were covered by LTCI (source: https://www.sciencedirect.com), which comprises 2.7% of older adults living in LTCFs (2018) and 6.2% of older adults in receipt of community based LTC (2018) (source: COVID_LTC_Report-Final-20-November-2020.pdf).

Last updated: November 23rd, 2021

Romania

In 2016 public LTC expenditure in Romania represented 0.3% of Gross Domestic Product (source: European Commission: The 2018 Ageing Report).

Last updated: February 10th, 2022

Singapore

Nursing homes in Singapore fall into three categories: public (~31%), private (~40%) and charitable/ not-for-profit (NFP) (~29%). There are a total of 77 nursing homes and 16,221 beds. Substantial government subsidies and donor funding financially assist most of the public and NFP homes, but they also require co-payment from clients. The Ministry of Health subsidy scheme does not cover private nursing homes, for which direct out-of-pocket expenses must be covered by clients (Udod et al., 2021).

Financing for LTC and support to older adults exists within an overall health-care financing that, in turn, is linked to the way in which social care and pension funding is organized. There are three complementary insurance schemes for disability cover: ElderShield and ElderShield Plus, and CareShield. ElderShield is a severe disability insurance scheme under which all citizens and permanent residents born before 1979 who have a MediSave account are automatically covered from 40 years of age (opt-out is possible). To be eligible for the scheme, individuals must be unable to carry out at least three out of six basic activities of daily living. ElderShield Plus offers higher monthly payouts or payouts for a longer period or a combination of both. CareShield Life is a compulsory insurance policy introduced in 2020 that provides payouts for people who are severely disabled. Everyone born between 1980 and 1990 is enrolled automatically and younger cohorts will be enrolled as they turn 30. Another funding scheme introduced in 2020, ElderFund, provides financial support for low income, severely disabled Singaporeans. Additional subsidies and schemes exist to finance LTC. Some schemes focus on financial support to informal caregivers and home-based care (source: Asian Development Bank).

Last updated: January 11th, 2022

Slovakia

In 2016 public LTC expenditure represented 0.9% of Gross Domestic Product in Slovakia (European Commission, 2018).

References:

European Commission (2018), ‘The 2018 Ageing Report. Economic & Budgetary Projections for the 28 EU Member States (2016-2070)’. Luxembourg: Publications Office of the European Union

Last updated: February 4th, 2022

Slovenia

In 2016 public LTC expenditure represented 0.9% of Gross Domestic Product (European Commission, 2018).

References:

European Commission (2018), ‘The 2018 Ageing Report. Economic & Budgetary Projections for the 28 EU Member States (2016-2070)’. Luxembourg: Publications Office of the European Union

Last updated: February 4th, 2022

Spain

In 2016 public LTC expenditure in Spain was estimated to represent 0.9% of Gross Domestic Product (source: European Commission: The 2018 Ageing Report). Spain has a tax-based long-term care financing system, with national eligibility criteria and defined benefits, run at regional level and financed by national, regional and local funding. National funding aims to take into account differences in population need (equalization function).

The Dependency Law includes a specific financing system, which differs from a tax-based system, that establishes the participation of both the public administrations (mainly the General State Administration and the Autonomous Communities) and beneficiaries of the benefits. This is carried out via  means tested co-payment systems (source: Joint-report-health-care-and-long-term-care-systems-and-fiscal-sustainability-2019-update_en). The financing system established in the Dependency Law is based on the existence of three levels of protection:

  1. The minimum level of protection provided, must be paid in full by the General State Administration (AGE). This depends on the number of people who rely on care from others who are receiving a benefit.
  2. The agreed level of protection is based upon the conclusion of the corresponding collaboration agreements between the AGE and the autonomous communities. The financing of the AGE of this level of protection is based on the annual distribution of money, which is distributed among the autonomous communities based upon a series of variables and predefined criteria.
  3. The implementation of the final level of protection is optional for autonomous communities, and they are responsible for its financing.

In a global study, recent calculations estimate that spending on care for people who rely on care from others is around 0.7% of the national GDP, although the improvement in the financing of the system will mean an increase in this amount.

Likewise, the AGE has been financing social security contributions associated with the special agreements that could be signed by non-professional caregivers of people in a situation of dependency. This helps ensure that no additional costs are incurred. It also ensures that non-professional caregivers (the vast majority of whom are women) benefit from this type of agreement, with a view to accruing future pensions (retirement, death and survival).

References:

Zalakain, J. Davey, V. & Suárez-González, A. (2020). ‘The COVID-19 on users of Long-Term Care services in Spain’. LTCcovid, International Long-Term Care Policy Network, CPEC-LSE, 28 May 2020. Retrieved from: LTCcovid-Spain-country-report-28-May-1.pdf

 

Last updated: June 29th, 2022   Contributors: Sara Ulla Díez  |  

Sri Lanka

Health spending was 3.8% of GDP in 2017, of which 1.6% was accounted for by public health expenditure and 2.2% by other financing. The government finances most social services, while non-profit sector and private donation financing is limited.  Families currently bear most LTC costs.  Residential care homes are financed by the non-profit sector and fees are paid by the resident or covered by charitable donations. In-home nursing care services are financed by out-of-pocket payments (source: Country Diagnostic Study on Long-Term Care in Sri Lanka (adb.org).

Last updated: September 6th, 2021

Sweden

In 2016, public long-term care (LTC) expenditure represented roughly 3.2% of Gross Domestic Product (GDP) (source: The European Commission).

All care in Sweden is provided on a means-based, not means-tested, basis. About 90% of health and social care is financed by county-council and local authority taxes. Consumer fees are relatively low, set to a maximum level of 5% of the costs (family/ economic resources are not considered), and the remaining 5% is covered by national taxes (Johansson and Schon, 2017). There is also a ceiling on care fees: as of 2017, no more than 2068 SEK per month can be charged for care. This applies to both at-home and institutional care (source: The European Commission).

Recently, LTC in Sweden has been affected by financial cutbacks. These have had various negative consequences, including those relating to working conditions for care workers, as they perform their duties in increasingly under-staffed conditions (Johansson and Schon, 2020).

References:

Johansson, L. and Schön, P. (2017). Sweden: Country Report. CEQUA: LTC Network. Retrieved from: Sweden Country Report

Johansson L. and Schön, P. (2020), ‘Governmental response to the COVID-19 pandemic in Long-Term Care residences for older people: preparedness, responses and challenges for the future: Sweden’, MC COVID-19 working paper 14/2021. http://dx.doi.org/10.20350/digitalCSIC/13701

Last updated: February 15th, 2022   Contributors: Daisy Pharoah  |  

Switzerland

In 2018 LTC expenditure was estimated to represent 2.4% of Gross Domestic Product in Switzerland (source: https://stats.oecd.org/Index.aspx?QueryId=30140).

Last updated: February 10th, 2022

Thailand

Total public spending on health-related LTC was 1.7 billion in 2012. The Ministry of Public Health is the major source of finance (1.6 billion). Spending by nongovernment organizations (NGOs) on health-related LTC was 70.3 million. Finance from family members is a major source of funding for LTC in Thailand. Government revenue is a source of finance for the Community-Based Long-Term Care Program, under the National Health Security Office (NHSO). But out-of-pocket payments are the main source of funding for LTC in private residential facilities.

References:

Asian Development Bank (2020) Country Diagnostic Study on Long-Term Care in Thailand. ADB.

Last updated: December 17th, 2021

Turkey

Turkey has a familiarist welfare, placing intergenerational obligations to provide care on family members, but there are concerns about the sustainability of this model. There is growing support from the non-profit sector and other private providers, some of whom receive public funding from provision of services, this support is means and needs-tested (source: The-COVID-19-Long-Term-Care-situation-in-Turkey-1.pdf).

Last updated: November 23rd, 2021

England (UK)

Overview

In 2018, LTC expenditure in the United Kingdom was estimated by the OECD to represent 1.8% of Gross Domestic Product.

Who bears the costs? Unpaid care, formal social care and healthcare and out-of-pocket spending

A large share of the resources that fund long-term care are provided in kind, through the time and effort of unpaid carers. Formal long-term care services in England are funded differently for health care, which is free at the point of use through the National Health Service (NHS) and social care, which is means-tested. Individuals who need care and their families also contribute to the costs of care through purchasing services privately or out-of-pocket payments for services. The Office for National Statistics estimated that, between 2019 and 2020, 36.7% of care home residents paid for their own care privately.  There is strong consensus on the need to reform social care funding and reforms are under way (see question 4.02).

As an illustration of who bears the costs of long-term care in England, it is useful to look at the study by Wittenberg et al., 2019, which found that, in 2015, 42% of the £24.2 billion costs of care of people with dementia were attributable to unpaid care, formal social care services represented another 42% and health care 16%. Out of the £10.2 billion social care costs, £6.2 billion were met by people who use care and their families, and £4.0 by the government. This means that the public sector only funds one third (32.6%) of the costs of dementia, leaving users and families to shoulder the rest of the costs through unpaid care or care fees. The cost of dementia estimates include health care costs that are not strictly “long-term care”, for example diagnostic services and hospitalisations, meaning that the share of public funding for long-term care for people with dementia is even lower than this estimate (Wittenberg et al., 2019).

Eligibility criteria for funded care

Eligibility to publicly funded social care is decided through means-testing, the levels are set nationally. People who exceed a certain level of savings and other assets (e.g. property) have to pay for care themselves. People below lower threshold,  £14,250 in 2022,  do not have to contribute anything towards their care, while people above £23,250 in 2022 have to fund all their social care costs. Between these two thresholds people have to contribute on a sliding scale. The upper threshold has not changed since 2010/11 which taking into account levels of inflation means that it went down in real terms (Bottery et al., 2022).

The distinction between ‘health’ and ‘care’ creates  inequity. A person deemed to have health needs may be able to access social care via the NHS’s continuing healthcare programme (although subject to restrictive eligibility criteria and long waiting times), but someone with personal care needs (e.g. arising from dementia) and no medical requirements is subject to the means test (source: Nuffield Trust).

Social care public funding

In England Local Authorities (LAs) organise and fund social care for people who are eligible. The LAs are funded largely through a combination of a grant from central government and local revenue-raising mechanisms, including a tax on housing (council tax). Social care funding is not ring-fenced, which means that local authorities can decide how much of their budget they allocate to care.

The King’s Fund Social Care 360 annual report by Bottery et al., (2022) provides a useful overview on public funding for social care in England. Between 2018/19 and 2019/20, total spending on adult social care increased by 2.2 %. In 2019/20, gross social care spending through LAs was £23.3 billion. Of this, £7.5 billion was spent on long-term support for working-age adults (£2.5 billion on nursing or residential care, £451 million on supported accommodation and £4.6 billion on community support, including home care). They also spent £159 million on short-term support for working-age adults. Spending for long-term support for older people was £7.9 billion (£5 billion on nursing or residential care, £121 million on supported accommodation and £2.7 billion on community support, including home care). They also spent £450 million on short-term support for older people (Bottery et al., 2022).

During the last decade, funding to councils has been cut by almost 50% (source: National Audit Office), which has put pressure on councils to spend less on care either through reducing the rates they pay providers or by reducing the number of people they fund. Because local authorities have a responsibility to raise revenue locally to subsidise the grant they receive from national government, those local authorities in more affluent areas are able to raise more (source: Institute for Fiscal Studies). The result is wide variation in the eligibility for care between local areas, despite the intention of the Care Act (2014) being to standardise eligibility.

References:

Bottery, S., Ward, D. (2022) Social Care 360. The King’s Fund. https://www.kingsfund.org.uk/publications/social-care-360

Wittenberg, RKnapp, MHu, B, et al. (2019) The costs of dementia in EnglandInt J Geriatr Psychiatry. 341095– 1103https://doi.org/10.1002/gps.5113

Last updated: March 8th, 2022   Contributors: Joanna Marczak  |  Adelina Comas-Herrera  |  

Scotland (UK)

Principal responsibility for providing services to social care clients falls on Scotland’s 32 local authorities. For home care, each local authority has their own charging policy which, together with a financial assessment of the persons income, will determine how an individual contributes towards their care services. Since 2002, anyone in Scotland aged 65 and over, whether living at home or in a care home is entitled to Free Personal and Nursing Care if they need it.

Before entering a care home, the local authority will carry out needs assessment and a financial assessment to work out what care the individual needs and how much they need to pay towards the care home fees and services. The amount a person will have to pay depends on if they fall above or below the capital limits (lower limit £18,000 and upper limit £28,750 as of April 2021) (Source: Care Information Scotland, Capital limits). Care home residents who have capital above the upper limit are classed as self-funders and those who have capital falling below the lower limit are funded by their local authority. Those whose capital lies in between the upper and lower limits receive some help from the local authority and fund the remainder themselves. However, Free Personal and Nursing Care in a care home means that self-funders who are aged 65+ receive a weekly payment towards their personal care (£193.50 as of 1st April 2021). Any self-funder in need of nursing care will also receive a weekly payment towards the cost of that care (£87.10 as of 1st April 2021). Finally, those who are funded by the local authority will receive personal care for free (Source: Care Information Scotland).

Last updated: March 10th, 2022   Contributors: Jenni Burton  |  David Bell  |  Elizabeth Lemmon  |  David Henderson  |  

United States

In 2018 LTC expenditure represented 0.8% of Gross Domestic Product in the United States (source: https://stats.oecd.org/Index). The financing of LTC in the United States is a continuous and growing challenge. Medicaid is the primary payer for formal LTC services, accounting for over half of national spending in 2017, however it is means-tested: it requires proof of need and exhaustion of individual financial resources (e.g. low-income status and/or limited savings). In 2016, the majority of Medicaid LTC funding was spent on home and community-based services (57%), but several states still apply their Medicaid dollars primarily to institutional care. Coverage and spending on LTC schemes also vary significantly by state (source: Long-term care financing in the US).

Some states fund home and community-based services through Medicaid waivers, and some even allow for self-directed Medicaid funds for payment of informal carers (sources: van Houtven et al. 2020; Vital and Health Statistics). An estimated 7.4 million Americans own private LTC insurance policy (around 15% of persons 65 and over).

References:

Van Houtven, CH., Boucher NA, Dawson WD (2020) The Impact of COVID-19 Outbreak on Long Term Care in the United States. Country report in LTCcovid.org, International Long-Term Care Policy Network, CPEC-LSE, 24th April 2020. Retrieved from: Article from ltccovid.org

Last updated: February 15th, 2022

Vietnam

Given the large number of people in Vietnam in need of social care – a figure that is increasing rapidly – the provision of services is considered inadequate and underfunded (source: UNDP report). The state has a minimally developed LTC system and is heavily reliant on informal care, which is funded by families as out-of-pocket expenses. However, these are unaffordable by many members of the population, and family carers are not entitled to benefits other than in exceptional circumstances (source: Royal Commission into Aged Care Quality and Safety). Furthermore, according to a UNDP report, the majority of working age people in Vietnam do not have a pension to look forward to (with over half of people over age 65 unable to access one); thus, many face income insecurity at an older age and need to work until they are too frail to continue doing so. They may be entitled to social assistance payments, but total state expenditure on these payments is low compared to other middle-income countries (such as Brazil and South Africa), and even some low-income countries (such as Bangladesh). This makes the possibility of purchasing private LTC unlikely for most.

Most of the financial support that does exist is to support those who qualify for institutional care, rather than providing people with support to remain in their homes or with their families. State-funded care is based around a nationwide network of social protection centres, which provide residential accommodation for various vulnerable segments of the population, including some elderly people. There are a total of 393 social protection networks around Vietnam; 180 are run by non-state entities and 213 are publicly run. Thirteen of the social protection centres serve the elderly population. The centres are all financed by the government: the public units are financed directly, and the non-state units are financed indirectly via tariffs paid to the provider, based on what services are delivered. Expenditure is approximately $35 per person per month. A range of weaknesses have been highlighted in these public care centres; mostly due to limited financing, which translates into low-quality standards of accommodation, poor services, an absence of various key services (such as counselling) and difficulties recruiting staff due to low salaries. Furthermore, they are only available to a small segment of the elderly population, leaving many without access to LTC outside of their families (source: UNDP report).

Due to the abovementioned government-funded services failing to meet the increasing demand for LTC in Vietnam, the government provides some incentive payments for volunteer primary caregivers in the community to cover elderly members of the population who are unable to live independently, are poor, and do not family to care for them. In these cases, social assistance payment s are provided to both the recipient of care and caregiver  (source: Royal Commission into Aged Care Quality and Safety).

Last updated: January 3rd, 2022   Contributors: Daisy Pharoah  |  

1.04. Approach to care provision, including sector of ownership

Overview

Introduction

Provision of  LTC services in recent decades have often relied on market mechanisms and New Public Management (NPM) theories. These approaches generally have led to increased provider competition, together with greater emphases on formal contracts and performance measurement. These arrangements have been based on the believes that the free markets,  competition and a split between financing/purchasing and providing services could lead to more efficient service delivery (Marczak et al. 2015).

Public and private providers (for- and non-for-profit)

Across OECD LTC services are often outsourced to private for-profit and not-for-profit providers, although public providers still play a role in some countries.  Some countries (e.g. Australia, the US or Canada) have a long history of private providers delivering publicly funded LTC services and state role involves the registration, licensing and monitoring. In other countries (e.g. UK, France, Central and Eastern European countries) involvement of private, especially for profit providers is a more recent phenomenon. In countries such as Germany and Japan entry of for-profit providers was related to the implementation of LTC insurance. In Nordic countries, despite a growth in for-profit providers, some LTC services across the region are still provided by public organisations (Marczak et al. 2015; 2021 Long-term care report).

Institutional versus community care

Most countries prioritise providing care at home and in the community to reduce reliance on (more costly) institutional care. The emphasis on providing care at home is also related to people’s preferences to be cared for at home  (Lipszyc et al., 2012; OECD, 2013). Despite of the emphasis to provide care in the community, these services are still limited in several countries (e.g. in Eastern and Southern European countries, the US).

References:

Lipszyc, B., Sail, E., & Xavier, A. (2012). Long-term care: need, use and expenditure in the EU-27 Economic Papers. Brussels European Commission.

Marczak J, Wistow G. (2015) Commissioning long –term care in OECD, in Gori C, Fernandez JL, Wittenberg R (eds) Long-Term Care Reforms in OECD Countries: Successes and Failures, Policy Press, Bristol

OECD. (2013). Health at a glance 2013: OECD indicators: OECD Publishing.

 

 

 

International reports and sources

Europe

Some information on care provision in EU countries can be found in the following reports:

European Commission (2016) Joint Report on Health Care and Long-Term Care Systems & Fiscal Sustainability.

2021 Long-term care report Volume 1 and Volume 2 – Publications Office of the EU

OECD

Gori C, Fernandez JL, Wittenberg R (2015) Long-Term Care Reforms in OECD Countries: Successes and Failures, Policy Press, Bristol

 

 

Australia

The Aged Care Financing Authority (ACFA) produces a report providing an overview of the funding and financing of the Aged Care Industry.  In 2019-2020, there were over 3,000 providers; 845 of these were residential services, 920 were home care providers, and 1,452 were Commonwealth Home Support Programme providers (ACFA ,2021).

The number of residential care providers has decreased from 1,121 in 2010-11 to 845 in 2019-20. The number of beds has increased from 182,302 to 217,145 in the same period of time, in 2019-20 36% of all beds were from providers with more than 20 facilities. With regards sector ownership, 56% of residential care providers are not-for profit (with 55% of the beds), 33% are for-profit (41% of the beds) and 11% are public (4% of beds). Of home care providers, 12% are government owned, 36% are private for-profit and 52% are not-for profit (ACFA, 2021)

References:

Aged Care Financing Authority (2021) Ninth Report on the Funding and Financing of the Aged Care Industry – July 2021. https://www.health.gov.au/resources/publications/ninth-report-on-the-funding-and-financing-of-the-aged-care-industry-july-2021

Last updated: February 15th, 2022

Austria

While by law the federal states are responsible for the provision of long-term care services for older adults in Austria, in practice, the responsibility for carrying out these services is shared with several entities, such as the municipalities, non-profit organisations and private operators (Rechnungshof Österreich, 2020). The share of publicly- and privately-provided care providers varies immensely between the federal states and between the home and residential care sector.

In residential care, approximately 50% of care providers are public, 25% are non-profit, and the remaining 25% are for profit (Molinuevo & Anderson, 2017; Rodrigues & Nies, 2013). Approximately 900 nursing homes were in operation in 2017, providing 78,000 beds. Around 400 of these nursing homes were run publicly, with the remainder run by mostly non-profit (religious) organisations, such as Volkshilfe, Sameriterbund and Caritas.

In the home care sector, 91% of providers are non-profit, 8% are public and 1% are for-profit (Rodrigues & Nies, 2013). Mobile services are primarily provided by non-profit (often faith-based) organisations, while day centres (not connected to inpatient facilities) are mostly run by private providers (Grossmann & Schuster, 2017).

References:

Grossmann, B. & Schuster, P.  (2017). Langzeitpflege In  Österreich:  Determinanter  Der  Staatlichen Kostenentwicklung. Studie Im Auftrag Des Fiskalrats. Wien: Fiskalrat. Retrieved from https://www.oesterreich.gv.at/themen/soziales/soziale_dienste/1/Seite.1210130.html

Molinuevo, D. & Anderson, R. (2017). Care homes for older Europeans: Public, for-profit and non-profit providers. Luxembourg: Publications Office of the European Union. Retrieved from Eurofound website https://www.eurofound.europa.eu/publications/report/2017/care-homes-for-older-europeans-public-for-profit-and-non-profit-providers

Rechnungshof Österreich (2020). Bericht des Rechnungshofes: Pflege in Österreich. Wien: RH Österreich

Rodrigues, R., &  Nies, H. (2013). Making Sense of Differences – The Mixed Economy of Funding and Delivering Long-term Care. In Leichsenring, K., Billings, J., & Nies, H. (eds), Long-term care in Europe: Improving policy and practice. Basingstoke: Palgrave Macmillan.

Last updated: February 15th, 2022   Contributors: Cassandra Simmons  |  

British Columbia (Canada)

Publicly subsidized services are provided by regional health authorities who deliver them through health authority owned or contracted private/not-for-profit facilities. For-profit, private facilities are often regarded as inferior to publicly owned/health authority owned facilities in terms of care, access to equipment, and government support.

In 2020, 33% of publicly funded LTC beds are operated directly by health authorities. The remaining 18,000 beds are delivered by for-profit companies (35%) and not-for-profit societies (32%) who have been contracted by one of the five regional health authorities in B.C.

A recent paper situates the contemporary crisis of COVID-19 deaths in seniors’ care facilities within the restructuring and privatisation of this sector. Through an ethnographic comparison in a for-profit and non-profit facility, they explore what they identify as brutal and soft modes of privatisation within publicly subsidised long-term seniors’ care in Vancouver, British Columbia, and their influence on the material and relational conditions of work and care. Workers in both places are explicit that they deliver only bare-bones care to seniors with increasingly complex care needs, and they document the distinct forms and extent to which these precarious workers give gifts of their time, labour, and other resources to compensate for the gaps in care that result from state withdrawal and the extraction of profits within the sector. They nonetheless locate more humane and hopeful processes in the non-profit facility, where a history of cooperative relations between workers, management, and families suggest the possibility of re-valuing the essential work of care (Molinary and Pratt, 2021; COVID-19_Response_Review.pdf; ABillionReasonsToCare.pdf).

References: 

Molinari, N. and Pratt, G. (2021), Seniors’ Long-Term Care in Canada: A Continuum of Soft to Brutal Privatisation. Antipodehttps://doi.org/10.1111/anti.12711

Last updated: February 11th, 2022   Contributors: William Byrd  |  

Denmark

Free choice of provider was introduced in 2003, which banned public monopolies in service provision.  Municipal councils are required by law to ensure private providers exist in each municipality. In 2017, Denmark had 320 private for-profit home care agencies (WHO, 2019).

Municipalities usually use competition with fixed prices for tendering home care. Competition takes place on quality by, for example, ensuring continuity of workforce. Municipalities are obliged to contract with any private-for-profit provider that meets the requirements on quality standards and the price. Public and for-profit providers co-exist and the latter are not permitted to refuse to provide care for any individual. Legislation allows private home care providers to compete on price in the privately-paid for sector and, although municipalities are no longer obliged to contract with all bidders who meet minimum tender specifications, they must contract with at least two such providers (Marczak and Wistow, 2015).

References:

Marczak, J., Wistow, G. (2015). ‘Commissioning long-term care services’, in Gori C, Fernandez JL, Wittenberg R (eds) Long-Term Care Reforms in OECD Countries: Successes and Failures, Policy Press, Bristol. Accessed at Commissioning long-term care services

WHO (2019), ‘Denmark: Country case study on the integrated delivery of long-term care’. Accessed at: https://www.euro.who.int/2019/denmark-country-case-study-on-the-integrated-delivery-of-long-term-care-2019).

Last updated: February 3rd, 2022

Finland

Municipalities determine whether they provide services themselves, work with other municipalities, purchase services from for- or non-profit actors, or set up cash benefit informal care systems (Ylinen et al., 2021).

References:

Ylinen, T., Ylinen, V., Kalliomaa-Puha, L. Ylinen, S. (2021), ‘Governmental response to the COVID-19 pandemic in Long-Term Care residences for older people: preparedness, responses and challenges for the future: Finland’, MC COVID-19 working paper 04/2021. http://dx.doi.org/10.20350/digitalCSIC/13692

Last updated: February 1st, 2022

France

In 2020 there were 7,502 residential long-term care facilities welcoming 610,000 residents. Of these, 50% are public, 31% are not-for-profits and 24% are for-profit. There are 2,294 supported living settings. Hospitals also offer long-term care units, where there were 32,790 patients recorded in end-2015. There are approximately 886,000 people in receipt of domiciliary care, most of which are older people. Nursing and polyvalent domiciliary care services provide services to 125,7000 service users, and domiciliary care services provide care to 760,000 people.

Last updated: January 6th, 2022   Contributors: Camille Oung  |  

Germany

Prioritisation of private and third-sector providers

The Long-Term Care Insurance act stipulates (§ 11 (2)) that private and third sector providers take priority over public providers in the provision of long-term care (Sozialgesetzbuch-sgb.de, n.d.).

Home care

Between 1999 and 2019 the number of home care providers in Germany has grown by 36%, an increase of 3,868 providers. Over the same period the number of people using home care doubled to 982,604 recipients in 2019 (Milstein, Mueller & Lorenzoni, 2021). The press release of another report states that the share of those receiving home care has increased from 20.6% to 25.4%, while the share of those living in residential care remained constant over the same period. This may be indicating a trend towards people’s preference of remaining in the community (RWI, 2021).

The largest share of care providers in 2019 were private for-profit providers (66.52%). Private for-profit providers served over half of home care recipients (52.33%). The second largest group were private non-profit providers (32.14%), providing home care for 46.13% of recipients. The smallest group were public providers (1.35%). This group provided home care for 1.54% of recipients (Gesundheitsberichterstattung des Bundes, 2022b; Milstein, Mueller & Lorenzoni, 2021).

Residential care

In 2019, residential care providers in Germany had a capacity of 969,553 beds. In comparison to other OCED countries Germany had a greater availability of beds in residential long-term care for those aged 65 and older than (53.6 beds per 1000 inhabitants vs. 47 beds per 1000 inhabitants).

Between 1999 and 2019 the increase in the number of residential care providers was larger (74%) than that of home care providers (36%).

Over the same time period, the share of private for profit care providers in residential care increased from 34.90% to almost 43%. In comparison to private-for profit and public providers, the share of full-time places also increased from 25.82% to 40.57%.

At the same time, the share of private non-profit organisations declined from 56.63% to 52.76%. The proportion of full-time places also declined (63.01% in 1999 to 53.81% in 2019).

As with home care, the share of public providers played a declining role in the provision of residential care (8.47% in 1999 declining to 4.52% in 2019). Over the same time period the share of full-time places also declined (11.7% in 1999 to 5.62% in 2019) (Milstein, Mueller & Lorenzoni, 2021).

References

Gesundheitsberichterstattung des Bundes (2022b) Ambulante Pflege- und Betreuungsdienste (Anzahl). Gliederungsmerkmale: Jahre, Deutschland, Art der Pflege- und Betreuungsdienste, Träger. Available at: https://www.gbe-bund.de/gbe/!pkg_olap_tables.prc_set_orientation?p_uid=gastd&p_aid=3932778&p_sprache=D&p_help=2&p_indnr=876&p_ansnr=98223306&p_version=2&D.000=1&D.374=2&D.983=1(Accessed 31 January 2022).

Milstein, R., Mueller, M. & Lorenzoni, L. (2021) Case study – Germany. In WHO Centre for Health Development (?Kobe, Japan)?, Organisation for Economic Co-operation and Development, Barber, Sarah L, van Gool, Kees, Wise, Sarah. et al. (?2021)?. Pricing long-term care for older persons. World Health Organization. https://apps.who.int/iris/handle/10665/344505. License: CC BY-NC-SA 3.0 IGO

RWI (2021) Pflegeheim Rating Report 2022: Wirtschaftliche Lage deutscher Pflegeheime is angespannt, jedes fünfte im “roten Bereich”. Available at: https://www.rwi-essen.de/presse/mitteilung/462/ (Accessed 5 February 2022).

Sozialgesetzbuch-sgb.de (n.d.) Sozialgesetzbuch (SGB XI) Elftes Buch Sozial Pflegeversicherung. Available at: https://www.sozialgesetzbuch-sgb.de/sgbxi/11.html (Accessed 11 February 2022).

Last updated: February 12th, 2022   Contributors: Klara Lorenz-Dant  |  Thomas Fischer  |  Kerstin Hämel  |  

Italy

Municipalities, local health authorities and the National Institute of Social Security (INPS) are directly involved in the organisation of LTC services, but others are involved in planning and funding these services, including the central state, regions and provinces.

The table below classifies the Italian LTC system according to initiative and actor involved:

Typology Service/Intervention Actors involved
Cash transfer Companion Allowance (CA – Indennità di Accompagnamento) National Social Insurance Agency
Monetary vouchers to finance informal caregiving or care services Municipalities

Regions

Local Health Authorities

In-kind services Home care

Nursing homes

Day care

Informal caregiving

Local Health Authorities and Municipalities

Municipalities and regions; providers (public, private, or not for profit)

Relatives or migrant care workers

(source: Notarnocola et al., 2021).

Informal care and migrant care workers, often with irregular contracts, play an important role in the organisation and provision of home care (European Commission, 2016).

References:

European Commission (2016), Italy – Health Care & Long-Term Care Systems. Excerpt from Joint Report on Health Care and Long-Term Care Systems & Fiscal Sustainability. Institutional Paper 37, volume 2, country documents. Economic and Financial Affairs, Economic Policy Committee. Retrieved from update_joint-report_it_en.pdf (europa.eu)

Notarnicola, E., Perobelli, E., Rotolo, A., & Berloto, S. (2021). Lessons Learned from Italian Nursing Homes during the COVID-19 Outbreak: A Tale of Long-Term Care Fragility and Policy Failure. Journal of Long-term Care, (2021), 221–229. DOI: http://doi.org/10.31389/jltc.73

Last updated: February 4th, 2022   Contributors: Eleonora Perobelli  |  Elisabetta Notarnicola  |  

Japan

There is a mixed market of provision in most parts of the market (except nursing care, where market entry is restricted to medical and non-profit providers). The 2000 LTC insurance reforms sought to create a competitive and mixed market of provision, especially for home care and has largely succeeded. Providers are paid according to a national fee schedule although municipalities have some freedoms to adjust it to suit local needs (Curry et al. 2018).

References:

Curry, N., Castle-Clarke, S. Hemmings, N. (2018). ‘What can England learn from the long-term care system in Japan?’ Nuffield Trust Research Report. Retrieved from: https://www.nuffieldtrust.org.uk/research/what-can-england-learn-from-the-long-term-care-system-in-japan

Last updated: February 10th, 2022

Malaysia

The long-term care (LTC) system in Malaysia is fragmented; this comes as a result of separate health and social care systems, as well as a divide between publicly and privately funded care. Malaysia has focused on family and community provided car; the result of this is that the burden of care tends to call on female members of the population (both in terms of formal and informal care providers. It is estimated that Malaysia’s LTC system serves only about 1% of the total population (Hasmuk et al., 2020).

For those who are terminally ill, Malaysia has 2 government-run homes and 15 government-run residential homes; there are an additional 320 registered LTC facilities, all of which are registered (as of 2020) under the Private Healthcare Facilities Act (2018). It is estimated that over a thousand care homes in Malaysia remain unregistered. There are also some facilities that are operated by non-governmental organisations (NGOs), but these generally lack the resources to care for those with nursing-level care needs and are primarily residential homes.  The majority of nursing homes are privately run, and there has recently been an emergency of privately-run day-care facilities. However, the majority of LTC in Malaysia is provided at home, often through domestic workers who are hired through agencies from the Philippines, Cambodia, Sri Lanka, and Indonesia. This home care is generally unregulated, and is not mentioned in the new Private Aged Care Facilities Act (Hasmuk et al., 2020).

References:

Hasmuk K, Sallehuddin H, Tan MP, Cheah WK, Rahimah I, Chai ST (2020) The Long-Term Care COVID-19 Situation in Malaysia available at LTCcovid.org, International Long-Term Care Policy Network, CPEC-LSE, 2 October 2020.

Last updated: February 16th, 2022

Mauritius

LTC is typically viewed as a family responsibility, although this is being challenged as society undergoes change. The government acknowledges that family caregivers require support and allocates a monthly allowance to caregivers of older people experiencing significant declines in capacity. Some efforts have been made to provide practical training to family caregivers. A number of residential facilities also exist. Currently, approximately 25 charitable homes are operated by nongovernmental organizations and funded by the government. Nursing and medical care is provided on site. Access to these homes is first-come, first-served and based on means testing. Overall, the demand for admission into these homes far outweighs their bed capacity. The number of private retirement homes, for those who can afford them, has increased in recent years (source: https://www.who.int/publications/i/item/9789241513388).

Last updated: January 6th, 2022

Pakistan

The prevalent family structure in Pakistan is the joint/extended family system: respect is shown to older people, and historically families take care of older people as they age. However, there has been a shift in recent years: an increasingly ageing population and migration of younger generations to areas where there are better career and employment opportunities as well as the entrance of women to the workforce has meant that more elderly people are compelled to reside in shelter homes (Cassum et al., 2020). There is still taboo around old-age homes, and as a result there are still relatively rare in Pakistan (Majid, 2018).

References:

Cassum, L.A., Cash, K., Qidwai, W. et al. 2020. Exploring the experiences of the older adults who are brought to live in shelter homes in Karachi, Pakistan: a qualitative study. BMC Geriatr 20, 8. https://doi.org/10.1186/s12877-019-1376-8

Last updated: January 27th, 2022   Contributors: Daisy Pharoah  |  

Poland

LTC services in Poland are provided by both private and public providers. The former includes unpaid carers and a grey zone (including immigrant carers) as well as non-for profit and for-profit residential care providers. Non-governmental organizations are active in the provision of care for older people – in supporting hospitals, care, and nursing facilities (Golinowska et al. 2017).

References:

Golinowska, S., Sowa-Kofta, A. (2017) ‘The Polish policy landscape. Retrieved from CEQUA: Poland Country Report

Last updated: February 15th, 2022   Contributors: Joanna Marczak  |  Agnieszka Sowa-Kofta  |  

Seychelles

The right to health care and social protection for all citizens is enshrined in the Seychelles’ Constitution of 1993. A number of government-funded long-term care services are available, including both home care and residential services. Long-term care provision remains mainly in the public sector, with some involvement of civil society and limited participation of the private sector. The country’s home care scheme was established in 1987. This programme makes it possible for people to remain at home rather than using residential or institution-based care. Caregivers are chosen by the beneficiary, usually a family member of the older person (source: https://www.who.int/publications/i/item/9789241513388).

Public residential facilities take the form of regional homes for older people and one 136-bed long- term care nursing facility. The regional homes usually consist of ten single-occupancy independent living units. Residents do not pay rent but are responsible for living costs. The country’s sole long-term nursing facility is in high demand: the waiting list is long (source: https://www.who.int/publications/i/item/9789241513388).

Last updated: January 6th, 2022

Singapore

LTC in the community is mostly provided informally by family and surrogate carers. Formal community services (e.g. day care) and residential care are largely provided through Voluntary Welfare Organisations or Social Service Agencies. In 2019, Singapore had 7,600 day care places, 10,300 home care places, 1,986 community hospital beds and 16,059 nursing home beds. Of the available nursing home beds, 75% were supplied through the Social Service Agencies and the government and 25% through private providers (source: https://ltccovid.org/wp-content/uploads/2020/08/The-COVID-19-Long-Term-Care-situation-in-Singapore-27July-2020.pdf).

Last updated: January 6th, 2022

South Africa

Traditionally, long-term care has been seen as a family responsibility yet few schemes are in place to support family caregivers. Private retirement villages cater mainly to older people with financial means. Publicly funded long-term care is available to only a small fraction of the older population. The majority of this type of care is provided in residential facilities which tend to be clustered in urban settings. Applicants are subject to a comprehensive assessment of their current living situation, family support, financial means and care needs. Only those who meet the criteria are eligible for admission. Individual care homes usually have their own admission policies and procedures, in addition to the formal criteria for obtaining public financial support. Availability of beds is another hurdle: most facilities have waiting lists for admission (source: https://www.who.int/publications/i/item/9789241513388).

Last updated: January 6th, 2022

Spain

In Spain, a number of public services are provided by private entities, both for and non-profit. In the care home sector, although marketisation has led to an increase in the available places, this is considered to have been at the expense of the quality of services, Public administrations have difficulties in terms of inspecting and evaluating services. Additionally, migrant workers, often without an official contract, provide a share of home care in Spain (Zalakain et al. 2020).

Data on the social care workforce in different settings:

Looking at the settings in which the social care workforce is employed gives a good indication of the scale of different types of care in Spain. Analysis by Martinez-Bujan et al (2021) shows that in 2020 there were estimated 684,949 people working in social care (based on data from the EPA survey), representing 3.7% of the total number of employed persons in Spain. 66.3% of social care workers were employed in private households, either as home carers (17.7%) or as domestic workers (82.3%).

Carers working in care homes represented 19.9% of the total care workforce (with most employed as nursing assistants), and carers in social services without accommodation (mostly home help services, usually referred to as SAD) represent 13.9% of the care workforce.

The Dependency Law

The Dependency Law states that an attempt should be made to provide adequate care for a person in a situation of dependency. If this is not possible, then money/cash will be provided to pay for care. The law also states that official/recognised benefits and services should be integrated into the Social Services Network of Autonomous Communities.

Within this starting framework, the Law itself also states that:

  • Recognised benefits and services are integrated into the social services network of the respective Autonomous Communities.
  • The network of centres will be made up of the public centres of the Autonomous Communities; the state centres for the promotion of personal autonomy and care of situations of dependency; and accredited private centres.

In short, some of the services The Dependency Law recognises are provided by public administrations aside from the autonomous communities, and by privately run centres that are regulated by the Autonomous Communities.

Non-subsidized private centres and services that provide services for people who rely on care from others must also have the proper accreditation from the corresponding Autonomous Community.

In conclusion, the services that are recognized within the framework of the Dependency Law must be provided through public or publicly funded places in private care homes . In cases where this is not possible, cash benefits can be provided for an accredited private centre to provide the service.

References:

Martínez-Buján, R.; Jabbaz, M. and Soronellas, M. (2021) El cuidado de mayores y dependientes en España ¿En qué contexto irrumpe la covid?. In Comas-d’Argemir, D. and Bofill-Poch, S. (eds.) (2021): El cuidado importa. Impacto de género en las cuidadoras/es de mayores y dependientes en tiempos de la Covid-19, Fondo Supera COVID-19 Santander-CSIC-CRUE Universidades Españolas. www.antropologia.urv.cat/es/investigacion/proyectos/cumade/

Zalakain, J. Davey, V. & Suárez-González, A. (2020). The COVID-19 on users of Long-Term Care services in Spain. LTCcovid, International Long-Term Care Policy Network, CPEC-LSE, 28 May 2020. Retrieved from: LTCcovid-Spain-country-report-28-May-1.pdf

Last updated: June 29th, 2022   Contributors: Carlos Chirinos  |  Sara Ulla Díez  |  

Sri Lanka

State and NGO operated day-care centers. The NSE supports 662 day-care centers around the country.  HelpAge Sri Lanka and other NGOs have also supported day-care centers. There may be other day-care centers and Elders’ Clubs operated by small NGOs and village-level
committees.

Sri Lanka has two main types of residential facilities: those primarily designed to provide housing for older people who lack shelter, and those that aim to provide LTC support and nursing care. Most facilities fall into the first category and are known as “elders’ homes” or “eldercare homes.” Even if the primary aim is to provide shelter, some residents have or develop needs for LTC support over time. Sri Lanka currently has around 255 eldercare homes serving approximately 7,100 elder residents, two owned by the central government and three by provincial councils. The private sector operates around 20 homes; others are not-for-profit and funded by private donations and some government funding. Not-for-profit eldercare homes are usually operated by faith-based organizations and NGOs. Homes for elders registered under the Department of Social Services increased from 68 in 1987 to 162 in 2003. Five public eldercare homes house 7% of all elder residents, and 220 private (i.e., not for-profit) eldercare homes house 85% of all elder residents.

The 2017 survey of eldercare provider institutions, it was estimated that there were about 25 home nursing care service providers, although the exact number is not known due to gaps in the implementation and monitoring of the formal registration system of such providers and regulation of the industry. These home nursing care services provide 24-hour nursing care to about 900 older clients. The services are usually expensive and not affordable for lower-income families (source: Country Diagnostic Study on Long-Term Care in Sri Lanka (adb.org).

Last updated: January 6th, 2022

sub-Saharan Africa

Within Sub-Saharan Africa, national efforts to develop long-term care systems exist only in Mauritius, Seychelles, and South Africa. The expansion of organized long-term care has been organic and uneven in terms of geographical spread, populations served, and services offered. Most organized care is clustered in urban metropolitan settings. Two major service models appear to dominate: charitable care for the most destitute older people (usually operated with few resources by faith-based, civil society or public welfare bodies) and private for-profit services, mostly in the form of residential homes for those who are able to pay. There appear to be few, if any, organized services for the majority of older people who fall between these extremes of the spectrum (source: https://www.who.int/publications/i/item/9789241513388).

Because organized systems of long-term care are generally lacking, families constitute the major source of care for older people who are no longer able to live independently. However, evidence also reveals that a substantial group of older people receive no family care whatsoever. The majority of family care is provided by female relatives, ranging in age from children to older adults, although some studies document significant involvement of men in caregiving. Some further evidence points to a role played by unorganized and unregulated domestic workers in long-term care provision. Care is provided either in older people’s homes or in the home of caregiving relatives (source: https://www.who.int/publications/i/item/9789241513388).

Many researchers and some policy-makers in sub-Saharan Africa have concluded that it is no longer feasible to rely on kin as the mainstay of long-term care provision, given a perceived weakening of extended family support systems. Key factors assumed to underly this shift include increased rural to urban migration and labour force participation, especially among young women; increasingly monetized economies; the impact of the HIV/AIDS epidemic (increased deaths among younger adults); and loosening norms and structures for extended family solidarity. Although perhaps intuitive, it is important to note that presumed declines in family care provision have not yet been studied formally and considerable debate continues about the ways in which social trends are shaping the experiences of families and later life in sub-Saharan Africa (source: https://www.who.int/publications/i/item/9789241513388).

Last updated: January 6th, 2022

Sweden

In Sweden, the provision of long-term care (LTC) is a local-level government responsibility. Increasingly, private care providers (including private companies as well as trusts and cooperatives) provide at home and institutional care in conjunction with municipalities, but financing, quality, and overall provision are still controlled by the municipalities (source: Sweden.se).

The provision of care provided privately has been steadily increasing. In 2018, private providers delivered around 24% of all nursing home and 18% of all homecare. It is noted that these figures vary substantially between municipalities. In general, payments to private providers follow a public tendering process, and are contract-based (sources: The Commonwealth Fund and SocialStyrelsen, 2020).

Last updated: February 10th, 2022   Contributors: Daisy Pharoah  |  

England (UK)

Care is provided by approximately 9,000 home care providers and over 15,000 care home providers. Around 78% of all adult care services are privately owned and run (ICF, 2017). The Care Act 2014 places a duty on local authorities to ensure that there is diversity and quality in the market of care providers. However, due to the downward pressure on fees stemming from cuts to local authority budgets, many providers find that the fees paid by local authorities fall short of covering the full costs of providing care. People who fund their own care are being charged on average 41% more than local authority funded residents because of this shortfall (CMA 2018). It is increasingly common for care providers to go out of business, struggle to stay in business, or hand back contracts to local authorities. A survey in 2019 found that some 75% of councils reported that organisations had either closed or handed back contracts in the last six months of 2020, creating enormous disruption and discontinuity for those receiving care (ADASS, 2019).  Because of market fragility, the government has introduced market oversight and a failure regime covering financial as well as quality failure (source: CQC).

References:

ADASS (2019). ADASS Budget Survey. Association of Directors of Adult Social Services

CMA (2017). Care homes market study. Competition and Market Authority

ICF (2018). The Economic Value of the Adult Social Care sector – England. ICF Consulting Limited, London

Last updated: March 8th, 2022

Scotland (UK)

Care at home is either provided by the local authority, the health board (in the case of NHS Highland), by private firms or voluntary/not for profit firms. According to data collected by the Care Inspectorate, as of 31st March 2020, of the 1,046 registered care at home for adults’ services, 495 (47%) were run by voluntary or not for profit organisations, 406 (39%) by private firms, 136 (13%) by the local authority and in NHS Highland 9 (<1%) care at home services were provided by the health board (Source: Care Inspectorate).

Within the care home setting, ownership types are the same but unlike care at home, in Scotland most care homes are privately owned. Specifically, as of March 2020, 680 (63%) of care homes for adults were privately owed. The remainder were owned by voluntary or not for profit organisations (24%), local authorities (12%) and the Health Board (1%).

Last updated: March 8th, 2022   Contributors: Jenni Burton  |  David Bell  |  Elizabeth Lemmon  |  David Henderson  |  

1.05. Quality and regulation in Long-term care

Overview

Introduction

While providing high quality of long-term care is a common goal in many countries, our report reveals a diversity of approaches to defining and measuring quality.

Different approaches to defining  quality in long-term care

The quality of LTC can be, and often is, viewed from various dimensions including: the quality of life of the person with care needs, supporting people’s empowerment and independence; improving, or at least limiting the deterioration in health conditions; protecting individuals’ human rights. Often quality encompasses a mixture of some or even all of these different elements. Furthermore, different stakeholders, including providers, policy makers, unpaid carers, may understand quality from different perspectives.  Such approaches to defining quality, however limited, usually apply to formal long-term care, while the defining and measuring quality of informal care is often even less addressed. Such a myriad of approaches to quality means that  there is no uniform definition of long-term care quality even in the European Union (2021 Long-term care in the EU).

Attempts to measure quality in long-term care

There are no common indicators of long-term care quality, countries use a number of different indicators to monitor care quality, which are not always specific to long-term care. Aspects of the quality of life are often considered an indicator of long-term care quality outcomes.  For example, adult social care outcomes toolkit (ASCOT) often used in the UK, measures outcomes by comparing person’s perceived outcomes after receiving care with the outcomes they would expect if no care was provided.  Patient-reported outcome measures (PROMs) and patient reported experience measures (PREMs), often used in Germany and Denmark,  collect information directly from people with needs to assess outcomes.  More recently, The Rights of Older People Index (ROPI) has been developed based on structure and process indicators, although collecting relevant data may be more challenging (2021 Long-term care in the EU).

International reports and sources

EU Report on LTC (2021), Volume 1 and 2, cover LTC quality in EU Member States.

Specific reports cover issues around care quality in Thailand, Australia, Vietnam, or Sri Lanka.

Australia

The Aged Care Quality and Safety Commission, under the Australian government, is the national regulator of aged care services. It is responsible for approving subsidies for providers, accrediting services, monitoring quality of care, providing education, handling complaints and imposing sanctions. Providers must comply with the Aged Care Quality Standards set by the Aged Care Act and the Aged Care Principles.

The Royal Commission into Aged Care Quality and Safety’s report highlighted instances of sub-standard care, concluding that the current mechanisms of oversight and market shaping have not been able to respond to changes in the provider market, arguing the need for a less centralised regional and local market governance system (Royal Commission, 2021).

References:

Royal Commission into Aged Care Quality and Safety (2021) Final Report: Care, Dignity and Respect, volume 1. Commonwealth of Australia. https://agedcare.royalcommission.gov.au/sites/default/files/2021-03/final-report-volume-1.pdf

Last updated: February 21st, 2022

Austria

As of 2021 there is no clearly defined and integrated quality framework, covering the different sectors of LTC. The ‘15a agreement’ on LTC between the Federal Republic and the federal provinces defines general quality criteria and leaves considerable room for interpretation. On the subnational level, the federal provinces enacted more detailed regulation to promote the quality of LTC services. These regulations address the structural and procedural aspects of LTC quality, and usually do not give much emphasis to outcome-related aspects (European Commission, 2021).

References:

European Commission (2021)  2021 Long-Term Care Report Trends, challenges and opportunities in an ageing society. Luxembourg: Publications Office of the European Union

Last updated: February 3rd, 2022

Belgium

The quality of LTC is ensured through initiatives and laws at different levels of governance and for different sectors or professionals. At federal level, healthcare professionals are regulated through the Ministry of Health and Social Affairs. Overall, quality in nursing homes is ensured through inspections, but also through set standards. In Flanders, the quality standards are related to the quality decree of 2003 setting the framework and quality criteria and indicators covering quality of care, safety, providers and organisation quality, and quality of life (European Commission, 2021).

Reference:

European Commission (2021)  2021 Long-Term Care Report Trends, challenges and opportunities in an ageing society. Luxembourg: Publications Office of the European Union

Last updated: February 3rd, 2022

Croatia

The LTC quality framework in Croatia is implemented under the by-law on the standard of quality for social services, based on the Social Care Act (2014). Quality standards have become mandatory for all providers (both in residential and non-residential sector, private and public). The Healthcare Quality Act regulates the qualitative framework for LTC in health services (European Commission, 2021)

References:

European Commission (2021)  2021 Long-Term Care Report Trends, challenges and opportunities in an ageing society. Luxembourg: Publications Office of the European Union

Last updated: February 4th, 2022

Cyprus

There is no quality framework that applies to all LTC services, and no relevant legislation exists to regulate quality standards for all LTC services. However, there is legislation regarding the quality of services in some areas of LTC, such as residential care and day-care centres. Homecare provision is monitored via visits made by social services officers, who are required to follow a specific evaluation/assessment protocol, made up of three competency themes: self-care, household tasks, and mental state. Regarding LTC in residential care and day-care centres, quality is monitored by reference to the minimum standards set out in the respective legislation and through regular inspections of the centres. Residential and daycare providers, either public or private sector, must meet certain minimum quality standards such as: the suitability and qualifications of employees; the ratio of employees to beneficiaries; the suitability and condition of facilities; the bedroom area ratio and shared areas ratio for each beneficiary; hygiene facilities; buildings safety and physical access; the suitability and range of LTC services provided; and the provision of socialisation and entertainment activities (source: 2021 Long-term care in the EU: European Commission).

Last updated: February 10th, 2022

Czech Republic

The tools introduced by the legal framework to ensure the quality of formal services in social care sector are the provider’s registration (each provider must be registered to provide services, registration can be withdrawn if quality standards are not met), inspections, and qualifications and training requirements for social workers. Quality standards focus on institutional processes  and on personnel capacities (European Commission, 2021).

References:

European Commission (2021)  2021 Long-Term Care Report Trends, challenges and opportunities in an ageing society. Luxembourg: Publications Office of the European Union

Last updated: February 4th, 2022

Denmark

Quality standards for LTC apply to public and private providers. The municipalities are responsible for service and quality assurance, however they need to comply with standards set by national framework legislation.  The municipalities must ensure full transparency and clear separation between their function as providers and as the authority supervising quality. The municipal quality standards describe in detail the services available locally and are intended to be objective and transparent to allow individuals to evaluate the performance of the provider themselves. There are 23 impact and background indicators For general monitoring of providers, most indicators are monitored through administrative data and through user surveys (WHO, 2019).

References:

WHO (2019), ‘Denmark: Country case study on the integrated delivery of long-term care’. Accessed at: https://www.euro.who.int/2019/denmark-country-case-study-on-the-integrated-delivery-of-long-term-care-2019).

Last updated: February 1st, 2022

Estonia

Following the Estonian Social Welfare Act in 2018, there are quality principles that must be followed in the provision of social services (source: European Commission: 2021 Long-term care in the EU).

Last updated: February 10th, 2022

Finland

The National Supervisory Authority for Welfare and Health (Valvira) and six Regional State Administrative Agencies (AVIs) are responsible for supervising Long-Term Care provision. Valvira’s role is to give directives and providing licenses to private providers, processing complaints and conduct major investigations and inspections. The AVIs are responsible for regional supervision and guidance of health care and welfare provision and responding to complaints.

Individuals who use care have a personal care and service plan which constitutes a contract between the client and the municipal authorities. This specifies the services and support a person should receive and responds to the idea of ‘self-supervision’, according to which clients should be involved in monitoring the quality of services. In 2019 serious failings in quality of care were found in some private sheltered care settings, which led to these institutions being closed down. New legislation set minimum personnel ratios in all care homes, as well as the requirement to assess all residents using interRAI by 2023 (EC, 2021 and Ylinen et al, 2021).

References:

European Commission (2021) Long-term care report. Trends, challenges and opportunities in an ageing society. Country profiles, volume II. Joint Report prepared by the Social Protection Committee (SPC) and the European Commission (DG EMPL). https://ec.europa.eu/social/main.jsp?catId=738&langId=en&pubId=8396&furtherPubs=yes

Ylinen, T., Ylinen, V., Kalliomaa-Puha, L. Ylinen, S. (2021), ‘Governmental response to the COVID-19 pandemic in Long-Term Care residences for older people: preparedness, responses and challenges for the future: Finland’, MC COVID-19 working paper 04/2021. http://dx.doi.org/10.20350/digitalCSIC/13692

Last updated: February 1st, 2022

France

No formal, comprehensive definition of LTC quality has been produced by national or local public authorities. Nevertheless, the reforming the social care sector act of 2002 describes the different components of quality and three main dimensions can be identified: 1) The obligation for social care providers to carry out a double evaluation: an internal one carried out by the provider and focused on quality improvement; and an external evaluation (which guarantees renewed authorisation) carried out by an external body; 2) The respect of different basic user right and 3) Multiannual contracts (five years) of objectives and means are signed between social care providers and pricing authorities (source: Publications catalogue – Employment, Social Affairs & Inclusion – European Commission (europa.eu).

Last updated: November 23rd, 2021

Greece

There is no definition of LTC quality in Greece neither in the healthcare nor in the social care sector. A general LTC quality framework that would apply to all types of support (residential or home care) and to various providers (public, for-profit, not-for-profit) is also lacking. Quality assurance is mainly based on a set of standards which are included in the different legal regulatory frameworks that govern the licensing and operation of the various types of LTC facilities and providers. Monitoring and control of the operation of the LTC facilities and providers is subject to on-site inspections by the competent services of the regional authorities (source: European Commission: 2021 Long-term care in the EU).

Last updated: February 10th, 2022

Hungary

There are national definitions of LTC quality provided in the form of government decrees or recommendations. Quality is defined separately regarding home nursing care as well as social care. Quality of services is typically defined by inputs, such as minimal requirements on personnel (number of employees and their qualification), physical conditions, infrastructure and equipment. For some services, procedures such as care planning are also prescribed in the decrees. The quality frameworks are mandatory and apply to all providers (private, for or non for profit, or public providers) (source: European Commission: 2021 Long-term care in the EU).

Last updated: February 10th, 2022

Ireland

Since 2008, there have been independent, unannounced inspections of all public, private and voluntary nursing homes. These inspections are carried out by the Health Information and Quality Authority (HIQA). Since 2012, a system of approved service providers has been put in place under home support services, which must meet a uniform level of national standards. There are 35 standards including a person-centred approach, autonomy, safeguarding, the promotion of rights and dignity as well as standards in relation to provision and use of resources. It is planned that home care services will be independently inspected, however as of 2021 there was no statutory basis to do so (source: European Commission: 2021 Long-term care in the EU).

Last updated: February 10th, 2022

Italy

There is no overall definition of LTC quality either at national or regional/local level. The national government is responsible for quality control at system level, this responsibility is shared with the regions. The latter adopt slightly different solutions and, to varying degrees, have been able to implement quality-assurance measures. Given the absence of a quality framework, LTC quality is assured through the following tools: authorisation and accreditation; the ratio between beneficiaries and different kinds of professional staff; legislation addressing abuses and mistreatment of LTC recipients; and professional requirements for workers employed in the sector. The use of these tools varies according to whether the services are residential/home-based, or whether they are related to healthcare or social care (European Commission, 2021).

References:

European Commission (2021)  2021 Long-Term Care Report Trends, challenges and opportunities in an ageing society. Luxembourg: Publications Office of the European Union

 

Last updated: February 4th, 2022

Lithuania

There are two different quality-assurance systems for LTC, integrated within either the healthcare system or welfare social services. Some quality requirements are enshrined in national law, while others are defined by municipalities or service-providers themselves including national quality regulations of LTC (e.g. hygiene norms) (source: European Commission: 2021 Long-term care in the EU).

Last updated: February 10th, 2022

Malta

The Social Care Standards Authority (SCSA) was set up in 2018 through Act No. XV of 2018. The SCSA is a regulatory body responsible for (a) the issuing of licences and warrants for service providers within the long term care sector, (b) the setting up of regulatory standards in respect of the various areas of social care, assistance and services provided by public and private entities, and (c) inspecting the long term care sector services, ensuring that practices are safe and up to the required regulatory standards for the persons using these services.

 

Last updated: February 10th, 2022   Contributors: Maria Aurora Fenech  |  

Poland

There is no formal quality framework regarding LTC services in particular, though various regulations address the presence of goal and process-oriented measures with respect to quality assurance separately in the healthcare and social sector. In the social sector, standards are set particularly in respect to residential care, covering minimum standards of the room size, access to toilets and kitchen, sanitation requirements, rooms furnishings and equipment, food as well as minimal staff requirements. Community day care services are standardised within dedicated programmes, such as ‘Senior+’ where minimum requirements regarding facilities and staff are set. Standards in home care are set covering broadly the types of services available and staff qualifications (source: European Commission: 2021 Long-term care in the EU).

Last updated: February 10th, 2022   Contributors: Joanna Marczak  |  

Romania

The quality of LTC social and socio-medical services is regulated by the law regarding the quality assurance of social services. The Social Policies and Services Directorate is in charge of designing the minimum quality standards for social services  and the accreditation of all public and private service providers. The minimum quality standards cover residential care, community-based care and homecare. The National Agency for Payments and Social Inspection can undertake unannounced  visits and conduct inquiries when problems are voiced regarding the quality in LTC sector; however it is not responsible for systematically monitoring service providers or services (source: European Commission: 2021 Long-term care in the EU).

Last updated: February 10th, 2022

Spain

The Spanish LTC system has three instruments to ensure quality: 1) a national and regional regulatory system; 2) formal quality controls; and 3) good practices. The regulation of quality in terms of services and the training of professionals and carers is developed through the Council of the System for Autonomy and Care for Dependency (CISAAD) which sets the minimum criteria for the whole state with respect to minimum carer-to-recipient ratios, staff qualifications, and resources/equipment/documentation applied to all accredited care centres. The CISAAD also establishes essential quality standards for homecare and residential care. Accredited centres can be inspected at the request of a dependent user or randomly by the autonomous community. The formal quality controls of the LTC system (the SAAD) are based on the accreditation systems established by each regional authority. Although there is a common denominator among them, each region has its own specific regulation and quality plan. With regard to good practices, the CISAAD agreed on common criteria to define, develop, and evaluate good practices in 2011, however most regions have not developed tools to evaluate good practice (Rodriguez Cabrero et al, 2018).

Leon and colleagues have identified a weak and fragmented regulatory system as one of the factors that contributed to delays in the implementation of measures to prevent COVID-19 in care homes in Spain.

References:

León, M., Arlotti, M., Palomera, D., & Ranci, C. (2021). Trapped in a Blind Spot: The Covid-19 Crisis in Nursing Homes in Italy and Spain. Social Policy and Society, 1-20. doi:10.1017/S147474642100066X

Rodriguez Cabrero G, Montserrat Codorniu J, Arriba Gonzalez de Durana A, Marban Gallego V and Moreno Fuentes FJ (2018) European Social Policy Network Thematic Report on Challenges in Long-Term Care, Spain. European Commission, Brussels.

Last updated: November 23rd, 2021

Sri Lanka

Since 2011 every person or organization, voluntarily or otherwise, that is engaged in the establishment and maintenance of any institution intended for providing residential care to more than five elders must register with the NSE, failure to comply with this requirement is an offense. Nursing care service providers are required to register with the Private Health Sector Regulatory Council (PHSRC) as a private medical institution. Registration must be done annually through the Provincial Director of Health Services (PDHS). The PHSRC will direct unregistered institutions to register. The PHSRC may shut down any institution that fails to comply with the registration requirement. The PHSRC sets guidelines for the operation of in-home nursing care services. The PDHS is required to check that an institution renewing its registration meets the guidelines and is, therefore, responsible for overseeing the quality standards for in-home nursing care institutions (source: Country Diagnostic Study on Long-Term Care in Sri Lanka).

Last updated: February 21st, 2022

Sweden

The idea behind the universal Swedish welfare system is that services are affordable for the poor, but still attractive for the wealthy. Quality of services is therefore particularly important (source: European Commission / ESPN Thematic Report).

Sweden has seen a transformation of care provision, as the previous monopoly of publicly run services has led to one with a growing share of private organisations (mostly, for-profit companies). However, all long-term care is managed and organised by municipalities, who are also therefore responsible for quality-control – in both the public and private provision of care. Despite this quality control at a municipal level, there has been a growing concern the growth of the private care sector might have negative implications for care quality. A 2017 study by Winblad et al. investigated this, exploring the relationship between care quality and ownership in nursing homes for the elderly in Sweden. Results of the study were mixed and inconclusive. Although public nursing scored better for individual accommodation and staffing levels, those that were privately operated were found to perform better in terms of medication review, screening for falls, and malnutrition. No significant differences were found in quality between private ownership types (for-profit / not-for-profit / private equity companies) (Winblad et al, 2017).

References:

Winblad, U., Blomqvist, P. & Karlsson, A. Do public nursing home care providers deliver higher quality than private providers? Evidence from Sweden. BMC Health Serv Res 17, 487 (2017). https://doi.org/10.1186/s12913-017-2403-0

Last updated: February 10th, 2022   Contributors: Daisy Pharoah  |  

Thailand

Last updated: February 21st, 2022

England (UK)

The Care Quality Commission (CQC) is an executive non-departmental public body of the Department of Health and Social Care and serves as the independent regulator for both health and long-term care.

Last updated: March 8th, 2022

Scotland (UK)

The Care Inspectorate is the regulatory body charged with ensuring that high care standards are met in Scotland. It carries out regular, unannounced inspections of Scottish care homes. Where care fails to meet the expected standards, the Care Inspectorate work with the provider to suggest how improvements in care quality can be made. If a provider fails to improve quality sufficiently, the Care Inspectorate have the authority to close the service down, subject to the decision of a sheriff.

Last updated: February 10th, 2022   Contributors: Jenni Burton  |  David Bell  |  Elizabeth Lemmon  |  David Henderson  |  

Vietnam

Quality in state-run institutional care centres in Vietnam is reputedly poor, which is mostly down to low levels of funding (source: UNDP report). The responsibility for quality assurance in terms of staffing sits at federal level: The Ministry of Labour, Invalids and Social Affairs prescribes professional standards and training care workers. Training is not mandated, but staffing levels are: for low-level care, they are 1:8-10, and for high level care 1:3-4. Nutrition staff (food purchasers and cooks) are mandated at 1:20. All care institutions (private, public, and NGO or religious providers) must submit annual reports to the federal authorities (source: Royal Commission into Aged Care Quality and Safety).

It is unclear whether quality is higher in private care homes. However, it may be worth noting that according to a recent report, 18% of the private residential care centres in 2016 were unlicensed (this suggests that it is quite possible that they have not been submitting any quality control reports to the authorities).

Last updated: February 21st, 2022   Contributors: Daisy Pharoah  |  

1.06. Care coordination

Overview

Introduction

Most countries have made an active effort to facilitate coordinated care, at least at policy level. Despite the policy efforts, as described in sections 1.00 and 1.02., responsibility for long-term care is fragmented, in very complex ways in some countries. LTC services are often separate from health services and countries frequently distribute responsibility for LTC across national, regional and local actors. Shortcomings have been identified in health and social care coordination/integration across countries at both national and local level undermining the performance of care provision.

LTC fragmentation and its practical implications

Analyses of integrated care policies in European countries indicate that although at governmental level integration documents tend to be produced involving health and social care sectors, at regional and local level integration between health and social care services often involves separate coordination institutions for each of the sectors (source: https://www.cequa.org/copy-of-all-publications). In practice the fragmentation of the care system affects not only the delivery of services, but can also be seen during needs assessment, when accessing benefits and packages, in data collection and in the diversity of quality improvement efforts. Fragmentation of services has been linked to dual administrative procedures, hindrances in access to care and longer waiting times (Spasova et al. 2018) and has been identified as a barrier to reducing hospitalization for ambulatory care sensitive conditions (source: WHO). In many countries, an absence of coordination between different sectors  (health, social care, public health, housing, transportation) often translates to parallel but not aligned systems for oversight, financing, staffing, and collection/management of data (source: https://apps.who.int/Eurohealth-26-2-77-82-eng.pdf).  Other more intangible factors pertaining to the health and social care divide include values and social standing of professionals (hierarchies) that impact the joint working of staff (source: https://www.euro.centre.org/downloads/detail/1537).

Research evidence on (cost) effectiveness of coordinated care

Some emerging evidence indicated that integrated care has potential for service efficiencies and can have a positive impact on outcomes of people with care needs. For example, among the different types of integrated care models, Chronic Case Model (CCM) appears to have the greatest potential for improving effectiveness and cost-savings through reducing A&E visits, hospital emergency admissions and length of hospital. Studies illustrate that Case Management (CM) tend not to have positive effects, especially if used as a stand-alone measure (see literature reviews, e.g. Nolte & Pitchforth, 2014; Damery et al., 2016).

Some evidence also exists that large pooled budgets may be effective, however,  pooled budgets may also uncover unmet need thus leading to increased costs (Weatherly et al., 2010; Mason et al., 2015).

References:

Damery, S., Flanagan, S. Combes, G. (2016). Does integrated care reduce hospital activity for patients with chronic diseases? An umbrella review of systematic reviews. BMJ Open, 2016, 1-31, 10.1136/bmjopen-2016-011952.

MASON, A., GODDARD, M., WEATHERLY, H. & CHALKLEY, M. 2015. Integrating funds for health and social care: An evidence review. J Health Serv Res Policy, 20, 177-188, 10.1177/1355819614566832.

Nolte, E. Pitchforth, E. (2014). What is the evidence on the economic impacts of integrated care? European Observatory on Health Systems and Policies

Spasova, Slavina, Baeten, Rita & Vanhercke, Bart. (2018). Challenges in long-term care in Europe. Eurohealth, 24 (?4)?, 7 – 12. European Observatory on Health Systems and Policies, World Health Organization. Regional Office for Europe. https://apps.who.int/iris/handle/10665/332533

WEATHERLY, H., MASON, A., GODDARD, M. & WRIGHT, K. (2010). Financial Integration across Health and Social Care: Evidence Review. Edinburgh: Scottish Government.

International reports and sources

The CEQUA project provides an overview of policies on integration in 11 European countries including England, France, Germany, Spain, Sweden, Finland, Austria, Poland, Latvia, Bulgaria, Czech Republic and Italy. There are also two case studies on integrated care, from Sweden and from France (https://www.cequa.org/).

WHO’s Regional Office for Europe has developed a framework for LTC integrated care and has published detailed country reports online.

Australia

The aged care system is difficult to access and navigate. The Royal Commission into Aged Care Quality and Safety found that people needing care found the experience to be time-consuming, overwhelming, and intimidating. The Royal Commission also expressed concern regarding the ability for people to make informed decisions due to the lack of information available.

LTC sector has been found to have less access to services, including health services. The Royal Commission into Aged Care Quality and Safety recommends the Australian Government to increase coordination by creating Medicare Benefits Schedule items to increase the provision of allied health services, including mental health services (Royal Commission, 2021).

References:

Royal Commission into Aged Care Quality and Safety (2021) Final Report: Care, Dignity and Respect, volume 1. Commonwealth of Australia. https://agedcare.royalcommission.gov.au/sites/default/files/2021-03/final-report-volume-1.pdf

Last updated: February 15th, 2022

British Columbia (Canada)

There is a lack of integration between health and social care both at a national and provincial level. Healthcare is broadly regulated by the Canada Health Act but provinces have jurisdiction over the operational aspects, funding, and services offered. Social care, including home and continuing care, are not covered under the Canada Health Act. Although the health and social care sectors are not governed under the same regulations, it is the same five regional health authorities providing both social and health care. The system is fragmented and power dynamics are difficult to understand (source: https://www.canada.ca/en/health-canada/services/health-care-system/reports-publications/health-care-system/canada.html).

Last updated: February 11th, 2022

Denmark

Coherence and coordination in service delivery is a stated goal of the Danish Health Act of 2005 and one of the key drivers behind the major reform of local government of 2007. In reducing the number of municipalities and administrative regions, the reform effectively represented a large step towards centralizing health and social services and has actively pursued the coordination between the administrative regions and municipalities in providing care. The Danish Health Authority has also established chronic disease management strategies that bring together efforts by the administrative regions and the municipalities under a single model.

There is a good level of integration of care across providers, people who need long-term care following hospital discharge, the hospital discharge management team  works closely with the general practitioner and local home services. The administrative regions are responsible for coordinating after-hours care. After-hours clinics tend to be associated with hospital emergency department  (WHO, 2019).

References:

WHO (2019), ‘Denmark: Country case study on the integrated delivery of long-term care’. Accessed at: https://www.euro.who.int/2019/denmark-country-case-study-on-the-integrated-delivery-of-long-term-care-2019).

Last updated: February 1st, 2022

Finland

Since the beginning of the 1990s there has been an effort to integrate home care at local level between social care home services and home health care, this is in the context of home care being considered as key to support people living independently for as long as possible. In 2004 a temporary law on the structural integration of health and social care was passed to remove legal obstacles to integrate home care. These processes, which at local level has involved the merger of municipal health unites with health and welfare departments, have led to more integrated care practices (Linnosmaa and Saaksvuori, 2017).

However, despite attempts at standardization of care services across the nation, there are major differences between municipalities due to their demographics; this appears to affect individuals ability to navigate the system (Ylinen et al., 2021).

References:

Linnosmaa I and Saaksvuori L (2017) Long-Term Care policy in Finland. Policy Brief. CEQUA LTC network.

Ylinen, T., Ylinen, V., Kalliomaa-Puha, L. Ylinen, S. (2021), ‘Governmental response to the COVID-19 pandemic in Long-Term Care residences for older people: preparedness, responses and challenges for the future: Finland’, MC COVID-19 working paper 04/2021. http://dx.doi.org/10.20350/digitalCSIC/13692

Last updated: February 1st, 2022

France

Coordination in the care sector is a longstanding preoccupation of the state and a response to the highly fragmented organization and funding of health, social and the need for ‘medico-social’  interventions in the care field.

Some level of integration at a local authority level has also been achieved through pathways and networks generally around gerontology and independence loss, as well as regional support networks and local information centres (source: https://halshs.archives-ouvertes.fr/halshs-02058183/document).

Various schemes have been developed since 2010– the PTA, the MAIA, and PAERPA schemes – having in common the creation of specific functions or professionals to support the social, medico-social and health professionals in their coordination tasks. Since, other arrangements have been developed in including the DAC (schemes to promote coordination) which should merge all other schemes excepting for CLICs which are organised by local authorities.

From a public policy perspective, the analysis of these developments shows that despite their initial objective of improving coordination between the health, social and medico-social interventions and facilities, the creation of three dedicated coordination schemes has also contributed to the complexity of elderly care professional and organizational landscape. Research also highlights limited accountability with poor transparency for users, prospective users and carers  (source: CEQUA France Country report (filesusr.com).

Last updated: January 6th, 2022   Contributors: Camille Oung  |  Alis Sopadzhiyan  |  

Germany

Organisational silos pose challenges to care coordination

A report provided by the German Society of Nursing Science focusing on domiciliary care highlights that structural barriers exist through the organisational silos in which service providers work. Data protection causes additional challenges to the effective communication between service providers, such as domiciliary care workers and GPs. Communication and coordination between different service providers are often not part of the services for which the care providers can be reimbursed by the LTC insurance and case conferences across professions are not established, requiring domiciliary care providers and GPs to coordinate services without an established framework (Fischer et al., 2021)

References

Fischer, T., Kopke, K., Sirsch, E., Büker, C., Graffmann-Weschke, K., Horn, A., Junius-Walker, U., Kümpers, S. & Meyer, G. (2021) S1 Leitlinie Häusliche Versorgung, soziale Teilhabe und Lebensqualität bei Menschen mit Pflegebedürftigkeit im Kontext ambulanter Pflege unter den Bedingungen der COVID-19-Pandemie – Living Guideline. Available at: https://www.awmf.org/uploads/tx_szleitlinien/184-002LGl_S1_Haeusliche-Versorgung-soziale-Teilhabe-Lebensqualitaet-bei-Menschen-mit-Pflegebedarf-COVID19-Pandemie_2021-04_1_01.pdf (Accessed 31 January 2022).

Last updated: February 12th, 2022   Contributors: Klara Lorenz-Dant  |  Thomas Fischer  |  Kerstin Hämel  |  

Israel

The line between medical and functional assistance is unclear. The tendency is to leave patients in their homes (community-based care), with the primary task of LTC defined as practical, mental and social assistance in functioning, with limited medical intervention.  The Israeli healthcare system is a national health insurance plan that provides universal coverage to all Israelis. All residents register with one of four competing non-profit health plans (HP’s).  The HP’s are responsible for geriatric and complex care (source: Traub Centre). Community LTC  is a branch of social insurance while institutional LTC is under the supervision of the Ministry of Health (MoH) and the Ministry of Welfare and Social Affairs (MoWSA) . A large percentage of LTC is privately funded  and there is a widespread culture of unpaid caregiving.

Last updated: February 11th, 2022   Contributors: Sharona Tsadok-Rosenbluth  |  

Italy

The Italian care system remains fragmented, which relates to the fact that the essential functions (e.g. health and social care as well as care training) are decentralized and managed at regional level. There is an increasing trend to reorganize the LTC system via ‘decentralisation’ of the health and social care, from the national to the regional and local level. In the social care sector, this development has led local administrations to develop their own LTC policies. The State-Regions Conference is the only body in charge of ensuring inter-institutional coordination (Barbarella et al. 2018).

References:

Barbarella F, Casanova G, Chiatti C and Lamura G (2018), ‘Italy: emerging policy developments in the long-term care sector’. CEQUA LTC network report. Retrieved from Italy Country Report

Last updated: February 4th, 2022

Japan

LTC services include some nursing, so much of what we would count as healthcare comes under LTC. Individuals are assigned a care manager on becoming eligible for care and, if the person is in hospital, they facilitate discharge. At a national level, the LTC and health systems are reviewed together every 6 years – this is where provider rates and regulations are reviewed (Curry et al. 2018). Japan has an ambition to create integrated care communities but these are wider than health and care and include community services and voluntary organisations too (Morikawa, 2014). Individuals assessed and deemed to have care needs are assigned a care manager who helps people to navigate the system (Tamiya et al. 2011).

References:

Curry, N., Castle-Clarke, S. Hemmings, N. (2018). ‘What can England learn from the long-term care system in Japan?’ Nuffield Trust Research Report. Retrieved from: https://www.nuffieldtrust.org.uk/research/what-can-england-learn-from-the-long-term-care-system-in-japan

Morikawa, M. (2014). ‘Towards community-based integrated care: trends and issues in Japan’s long-term care policy’. International Journal of Integrated Care. Retrieved from: Japan’s long-term care policy (ijic.org)

Tamiya et al. (2011). Population ageing and wellbeing: lessons from Japan’s long-term care insurance policy. Lancet. doi: 10.1016/S0140-6736(11)61176-8

Last updated: February 10th, 2022

Netherlands

The Netherlands has been experimenting with various integrated care initiatives over the past years (source: WHO | World Health Organization).

Last updated: February 1st, 2022

Poland

LTC in Poland is organised by national health care and local social services. The coordination of activities between sectors has been hampered by different governance priorities. The health sector concentrates on the long-term goals formulated in the National Health Programme. In the social services sector, ‘senior policy’ was formulated, aimed at the social activation (e.g. day care facilities) and social integration of older people (Golinowska et al. 2017).

References:

Golinowska, S., Sowa-Kofta, A. (2017) ‘The Polish policy landscape. Retrieved from CEQUA: Poland Country Report

Last updated: February 10th, 2022   Contributors: Joanna Marczak  |  Agnieszka Sowa-Kofta  |  

Singapore

Care integration is high on the policy agenda in Singapore. For example, to facilitate integrated delivery of support and services, Singapore has consolidated aging, health, and LTC under the Ministry of Health (MOH) with inter-ministerial remits, where relevant.

The Agency for Integrated Care has taken on the role of a National Care Integrator since 2009. It is the agency’s role to match people with LTC needs with available services. The agency further is ‘responsible for supporting community care service partners in manpower development, quality improvement, programme development, and crisis management’.

In 2012, a Regional Health System model was introduced by the Ministry of Health to support the provision of ‘seamless integrated care based on geographic location’. This model facilitates local collaboration and transitions between care settings and has been reported to strengthen management capabilities and continuity of care. Key actors are designated anchor public acute hospitals as well as ‘primary, chronic health and social care’ services in the different geographic areas.

Last updated: January 6th, 2022

Spain

The provision of LTC in Spain is fragmented, due to the intervention of many agents and the differences between the autonomic regions. There have been several initiatives to improve care coordination through: the creation of social and healthcare coordination structures, the implementation of shared information systems, improving the comprehensive assistance in social centres and promoting the creation of hospital assistance units of continuity (Guillen et al., 2017).

A published study aimed to analyse the residential care crisis in Spain in the context of the COVID-19 pandemic and its impact on high mortality and abandonment of the user population. The theoretical focus of the analysis was the comprehensive and person-centred care (CPCC) model based on the autonomy of people and the centrality of their rights. The study concludes by proposing a comprehensive reform of long-term care that includes both a change in residential care in the form of small cohabitation units and reinforcement of care in the home and the community as a growing preference for the elderly population. An optimal combination of residential and home care is the basic proposal of this work (Gallego et al., 2021).

References:

Gallego, V. M., Codorniu, J. M., & Cabrero, G. R. (2021, January 1). The impact of COVID-19 on the elderly dependent population in spain with special reference to the residential care sector. Ciencia e Saude Coletiva. Associacao Brasileira de Pos – Graduacao em Saude Coletiva. https://doi.org/10.1590/1413-81232020261.33872020

Guillen M. et al. (2017) Country Report – Spain. Quality and cost-effectiveness in long-term care and dependency prevention. CEQUA LTC Network.

Last updated: February 10th, 2022   Contributors: William Byrd  |  

Sweden

Integrated care is an explicit policy goal in Sweden. The law in Sweden stipulates that municipalities and country councils should cooperate, and that individual care plans should be established as a person begins to require services from both the municipal social services and the health sector. This is to ensure coordinated care and continuity.

However, the Swedish system is highly decentralised, and the country faces great challenges of care coordination between health and social care services for older people.  It has been suggested that the increased privatisation – introduced to mitigate financial strain on the system and inefficiencies – has made it even more challenging to cordinate care for individuals with complex needs (Lijas et al., 2019). Additionally, autonomy in the organisation and provision of long-term care at a local level means that the national level is unable to enforce structures for co-ordination (Johansson and Schoen, 2017).

According to an OECD report, the rate of Chronic Obstructive Pulmonary Disease (COPD) in elderly patients (over 80 years old) in Sweden is one of the highest in the OECD countries, suggesting there is scope for hospitalisations to be reduced through better coordination of care.

The Norrtaelje Model is a Swedish initiative, one of the key goals of which is to promote a common health and social care organisation to achieve greater user benefit (Back & Calltorp, 2015).

References:

Bäck, M. A., & Calltorp, J. (2015). The Norrtaelje model: a unique model for integrated health and social care in Sweden. International journal of integrated care15, e016. https://doi.org/10.5334/ijic.2244

Johansson, L. and Schoen P. (2017) Country report for Sweden. CEQUA LTC network.

Liljas, A., Brattström, F., Burström, B., Schön, P., & Agerholm, J. (2019). Impact of Integrated Care on Patient-Related Outcomes Among Older People – A Systematic Review. International journal of integrated care19(3), 6. https://doi.org/10.5334/ijic.4632

Last updated: February 10th, 2022   Contributors: Daisy Pharoah  |  

England (UK)

There is a clear policy drive towards integrated care in England. Health care has traditionally been coordinated through local National Health Service (NHS) planning and provider organisations, which are accountable to the national government. In contrast, social care contrast is under the responsibility of local authorities, which have their own governance structures and are accountable to elected local governments. Local authorities can make their own decisions about implementation and funding allocation. Since the late 1990s to 2010 the government focused on the structural elements of partnership through multiple policy reforms. A review of progress in that period concluded that there was insufficient attention to supporting joint working through building relationships and trust (Glasby et al, 2011).

Since 2010, England introduced initiatives to encourage better integration between health and social care, building on previous efforts to improve partnerships between the two sectors. A study by Miller et al. (2020) reviewing progress on integrated health and social care in England from 2010 to 2020 has concluded that a focus on locally relevant and specific tasks or issues has resulted in the greatest progress. Broader ill-defined goals and constant policy changes are not helpful (Miller et al, 2020).

Lewis et al., (2021) conducted a review of the findings from three key integration pilot programmes (Integrated Care Pilots, Integrated Care and Support Pioneers, and New Care Model ‘Vanguards’ highlights the challenges of identifying the objectives of integrated care). All three programmes shared the aim of improving coordination between hospital and community-based health services and between health and social care. However, over time, the NHS narrowed the lens used to evaluate their success to impact on reducing unplanned hospital admissions, which led to a diminished role for local authorities and voluntary sector partners. The evaluations of the pilots show that integration is a long-term project and that reductions in unplanned hospital admissions are not necessarily the best way to measure success (Lewis et al, 2021).

The NHS Long Term Plan published in 2019 announced Integrated Care Systems (ICS) everywhere by April 2021, bringing together local organisations to deliver a ‘triple integration’ of primary and specialist care, physical and mental health services, and heath and social care. These ICSs are rooted in the NHS, with the expectation that local authorities, the voluntary sector and others will partner with them.

The plan also includes the expansion of the Enhanced Health in Care Homes model to the whole country by 2023/4 to strengthen links between primary care networks and care homes.

The Plan announces support for local approaches to blending health and social care budgets and that a forthcoming green paper on adult social care will set out further proposals for social care and health integration.

References:

Glasby J, Dickinson H, Miller R. Partnership working in England – where we are now and where we’ve come from. International Journal of Integrated Care. 7 March 2011; 11: 1–8. DOI: https://doi.org/10.5334/ijic.545.

Lewis, R. Q., Checkland, K., Durand, M. A., Ling, T., Mays, N., Roland, M., & Smith, J. A. (2021). Integrated Care in England – what can we Learn from a Decade of National Pilot Programmes?. International Journal of Integrated Care, 21(S2), 5. DOI: http://doi.org/10.5334/ijic.5631

Miller, R., Glasby, J., & Dickinson, H. (2021). Integrated Health and Social Care in England: Ten Years On. International Journal of Integrated Care, 21(S2), 6. DOI: http://doi.org/10.5334/ijic.5666

Last updated: March 8th, 2022   Contributors: Adelina Comas-Herrera  |  Chris Hatton  |  

Scotland (UK)

Anyone who is eligible to receive social care services in Scotland has the option of choosing Self-Directed Support for their care. Self-Directed Support was introduced in Scotland in April 2014. This option gives individuals greater control over how they receive their care and allows them to personalise their care in a way that suits them. A Public Health Scotland report on social care estimated that in 2018/19, around 79.4% people used self-directed support to make choices about their care (Source: Insights in Social Care: Statistics for Scotland). However, an Audit Scotland report suggested that the accuracy of data regarding self-directed support required improvement (Source: Self-directed support: 2017 progress report).

Last updated: March 10th, 2022   Contributors: Jenni Burton  |  David Bell  |  Elizabeth Lemmon  |  David Henderson  |  

United States

Despite Medicaid and Medicare’s central role in the funding of LTC services, the LTC and health care sectors are not integrated. Differences in how medical care and LTC are paid for, and prioritized in each state, as well as the ownership of healthcare organizations (i.e. hospitals) compared to the LTC sector, hampers coordination of services as well as opportunities for a joint care delivery system (Dawson et al. 2021).

References:

Dawson, W. D., Boucher, N. A., Stone, R., & Van Houtven, C. H. (2021). COVID-19: The Time for Collaboration Between Long-Term Services and Supports, Health Care Systems, and Public Health Is Now. The Milbank Quarterly, 99(2), 565–594. https://doi.org/10.1111/1468-0009.12500

Last updated: February 11th, 2022

Catalonia (Spain)

The Catalan Government Plan for the XII legislature, approved on September 25, 2018, highlighted the need to deploy a unique strategy of integrated social and health care due to the health and social needs of the population, especially for those people who are older or have complex needs. It was agreed to redefine the Interdepartmental Plan for Social and Health Care and Interaction (PIAISS), which was replaced by the new Integrated Social and Health Care Plan (PAISS).
The aim was, in short, to create a model of integrated care for health and social services, drawing up a work plan that would help to generate a model of coordinated global intervention, with the same overall vision, which would place the person at the center.

Last updated: March 3rd, 2022   Contributors: Cèlia Estruch  |  

1.07. Information and monitoring systems 

British Columbia (Canada)

Data availability presented a key challenge in managing pandemic, for example, lack of baseline data made it difficult to calculate excess staffing needs and costs during COVID-19 (source: https://news.gov.bc.ca/files/1.25.2021_LTC_COVID-19_Response_Review.pdf).

Last updated: February 11th, 2022

Denmark

The sundhed.dk portal was launched in 2003 as a partnership between the Ministry of Health, five administrative regions and municipalities. The platform gathers information from 85 sources to enable individuals to access their medical records such as laboratory results, prescription information and scheduled visits, individuals can also enter or complement data on patient-reported outcomes. Hospitals share various information including discharge summaries and outpatient notes, and medical results with other hospitals, general practitioners and other specialists (WHO, 2019).

References:

WHO (2019), ‘Denmark: Country case study on the integrated delivery of long-term care’. Accessed at: https://www.euro.who.int/2019/denmark-country-case-study-on-the-integrated-delivery-of-long-term-care-2019).

 

Last updated: February 1st, 2022

France

There are limited information systems at a national level. The regional administrations (ARS) have some level of information collecting. There have been efforts to transfer the recording of deaths away from paper records to a secure app available to doctors (source: https://www2.assemblee-nationale.fr/static/15/pdf/rapport/i3633.pdf).

Last updated: January 6th, 2022

Data collected by Long-Term Care Insurance Funds

Reports show that the health and long-term care insurance funds collect data on clients’ service use. Some of the information can be accessed (anonymised) for research purposes (Wissenschaftliche Institut der AOK, 2022).

References

Wissenschaftliches Insitut der AOK (2022) Publikationsdatenbank. Available at: Publikationsdatenbank | WIdO – Wissenschaftliches Institut der AOK (Accessed: 31 January 2022)

Last updated: February 12th, 2022   Contributors: Klara Lorenz-Dant  |  Thomas Fischer  |  Kerstin Hämel  |  

Israel

The Israeli National Insurance (IN) publishes annual reports and regular studies on community-based LTC resource allocation and service outcomes. Information on vulnerable and older adult populations in need of care services is also gathered through various social policy think tanks and NGOs: JDC (Joint Distribution Committee)-Eshel (source: The Joint), which conducts an extensive study of care users and produces annual reports on aging. The evaluations of resource allocation and services are shared with the Israeli Government (source: Myers-JDC-Brookdale Institute.  JDC-Eshel in partnership with Mashav produce an annual statistical yearbook of Israel’s aging and care user populations (source: Myers-JDC-Brookdale Institute).

Last updated: January 6th, 2022

Italy

For healthcare, Italy has a comprehensive information and monitoring system (National Healthcare Information System) covering population health status, budgetary and economic efficiency, organisation climate and staff satisfaction, patient satisfaction, performance indicators (appropriateness, quality) and effectiveness in reaching regional targets (European Commission, 2016).

Out of the 33 indicators that monitor and assess regions’ health and LTC systems’ quality, there are only three LTC-related measures: number of care home beds and residents, number of hours of home care delivered and day care centres (Ministerio della Salute, 2021). The status of LTC information system is poor (particularly compared to heathcare), which led to negative consequences during the Covid-19 outbreak. As of November, 2021 there was no  official data on the pandemic outbreak in LTC services (Notarnicola et al., 2021).

References: 

European Commission (2016), Italy – Health Care & Long-Term Care Systems. Excerpt from Joint Report on Health Care and Long-Term Care Systems & Fiscal Sustainability. Institutional Paper 37, volume 2, country documents. Economic and Financial Affairs, Economic Policy Committee. Retrieved from:  update_joint-report_it_en.pdf (europa.eu)

Ministerio della Salute (2021) Monitoraggio di LEA attraverso la cd. Grillia LEA. Metodologia e Risultati dell’anno 2019. Direzione Generale della Programmazione Sanitaria – Ufficio VI. Retrieved from: C_17_pubblicazioni_3111_allegato.pdf (salute.gov.it)

Notarnicola, E., Perobelli, E., Rotolo, A., & Berloto, S. (2021). Lessons Learned from Italian Nursing Homes during the COVID-19 Outbreak: A Tale of Long-Term Care Fragility and Policy Failure. Journal of Long-term Care, (2021), 221–229. DOI: http://doi.org/10.31389/jltc.73

Last updated: February 4th, 2022

Japan

As almost all people in need of care go through the municipality-funded needs assessment process to qualify for care, there is good data available on numbers of service users that is used to inform policy and reviews of care benefits by Ministry of Health, Labour & Welfare. It’s not clear whether the data is used for evaluation (source: https://www.mhlw.go.jp/english/policy/care-welfare/care-welfare-elderly/dl/ltcisj_e.pdf).

Last updated: February 10th, 2022

Poland

The Law on Older Persons, introduced in 2015, requires that the Council of Ministers of the Republic of Poland must provide annual information on the situation of older people (60+) regarding, among other things,  their health status, access to healthcare and long-term care services. The report also contains information about the implementation of the tasks of local governments in providing support for older people. The information is publicly available on the website of the Ministry of Family and Social Policy and the Central Statistical Office (source: 2021: Ageing policies – access to services in different EU Member States).

Last updated: February 10th, 2022   Contributors: Joanna Marczak  |  Agnieszka Sowa-Kofta  |  

Sweden

Sweden has extensive information management system which captures comprehensive health and care data. Data is provided at regional and municipal level, and compiled by the Swedish Association of Local Authorities and Regions and The National Board of Health and Welfare (source: European Commission Report).

Last updated: February 10th, 2022

England (UK)

There is no national minimum dataset for care homes, or social care in England. During the pandemic, the limited existing data was supplemented by data collections from several bodies (the NHS, providers themselves, the death registration system, Public Health England, and the Care Quality Commission (CQC)). Those working in the sector report that this has led to repeated collection of similar data, by multiple stakeholders. This reflects the lack of data and technology infrastructure in the social care sector, which by comparison with the health care sector in England and Wales, has received little investment.

The COVID-19 crisis has stimulated some technological innovation in care homes, for example, the NHS has expanded the use of encrypted NHS emails to care home staff, developed a web portal for Personal Protection Equipment (PPE) emergency procurement, and has piloted ‘remote’ social care interventions. Some care homes and General Practices (GP) have also used tablets and video calling to allow GP visits and to communicate with families. The digital lifeline initiative during the COVID-19 crisis enabled over 5,000 adults with intellectual disabilities in England to receive internet-enabled devices, with data and local support to help people learn how to use their device, with promising impact in the short term. However, this is in the context of fundamental issues with capacity of the care home sector to engage in these initiatives due to a lack of infrastructure (e.g. broadband), or low usage of digital technology among home care staff (Digital Lifeline Fund, 2021)

At a provider and individual level, data and information sharing are limited. There have been several successful partnerships between the health and local authority sector across England to link social care data collected by councils with health care data. However, this only covers people whose social care provision is provided by local authorities, not those who pay themselves. There are no national datasets on social care utilisation or individual expenditure and the complex and fragmented nature of the provider market makes data collection difficult. The development of the Capacity Tracker (Source: About Capacity Tracker for care homes, mandated during Covid-19, is a welcome addition with potential to provide market intelligence, although there are concerns about the accuracy of data entered, with implications for planning and prioritisation in central government (Source: LaingBuisson). It remains impossible to obtain an accurate estimate of the number of self-funders or total social care spend across all care settings (Source: Adult social care statistics: the potential for change).

References: 

Digital Lifeline Fund, (2021). DCMS Digital Lifeline Fund: Interim Report

Burton, J., Goodman, C., Quinn, T. (2020). The invisibility of the UK care home population – UK care homes and a minimum dataset. LTCcovid.org

Last updated: March 10th, 2022   Contributors: Chris Hatton  |  Nina Hemmings  |  

United States

While states differ in their collection of data, federal evaluations of LTC services and needs use the Center for Disease Control’s (CDC) recently renamed National Post-Acute and Long-Term Care Studies (NPALS). Information and statistics on adult day centre services and participants as well as residential care communities can be accessed dating back to 2012 on the CDC website (source: https://www.cdc.gov/nchs/npals/reports.htm).

Last updated: February 11th, 2022

1.08. Care home infrastructure

Overview

Prevalence of residential care

Overall, there has been a shift away from residential care towards more care provided in the community with the expectation that the latter is not only cheaper but also can offer better quality of care. Since the priority is often given to community-based care, consequently, the availability of residential care has been decreasing in many countries (Marczak et al. 2015; 2021 Long-term care in the EU).

Overall, over the years, countries such as Switzerland, Australia,  Netherlands, Sweden, Norway, Finland, Luxemburg and New Zealand had the highest rates of recipients of residential care at between 5- 6% of population 65 years and older. Conversely, in countries such as Portugal and Poland the rates were below 1% (Colombo et al., 2011). Residential care facilities appear to be limited in several Eastern and Southern European countries as well as in Japan (Marczak et al. 2015; Kubo et al. 2014, 2021 Long-term care in the EU).

Care home infrastructure

Care home infrastructure and design guidelines vary greatly between countries. For example, in some countries (e.g. Germany) there are quotas for single-room occupancy in care homes. Some countries have high percentage of single room occupancy (e.g. 80% of rooms in North-Rhine Westphalia region of Germany and 89% of room in British Columbia, Canada), whereas in other countries multi-bed room are predominant (e.g. in many Central and Eastern European countries).

References:

Colombo, F., Llena-Nozal, A., Mercier, J., & Tjadens, F. (2011). Help wanted? Providing and paying for long-term care: OECD Health Policy Studies.

Kubo, M. (2014). Long-term care insurance and market for aged care in Japan: focusing on the status of care service providers by locality and organisational nature based on survey results. Australias J Ageing, 33(3), 153-157.

Marczak J, Wistow G. (2015) Commissioning long –term care in OECD, in Gori C, Fernandez JL, Wittenberg R (eds) Long-Term Care Reforms in OECD Countries: Successes and Failures, Policy Press, Bristol

International reports and sources

OECD

Colombo, F., Llena-Nozal, A., Mercier, J., & Tjadens, F. (2011). Help wanted? Providing and paying for long-term care: OECD Health Policy Studies.

Gori C, Fernandez JL, Wittenberg R (2015) Long-Term Care Reforms in OECD Countries: Successes and Failures, Policy Press, Bristol

Europe

Some information on residential care in EU countries can be found in the following reports:

European Commission (2016) Joint Report on Health Care and Long-Term Care Systems & Fiscal Sustainability.

2021 Long-term care report Volume 1 and Volume 2 – Publications Office of the EU

Australia

There are approximately 845 residential care providers in Australia, operating across more than 2,720 sites. In terms of ownership (ACFA, 2021, table 6.1):

  • – 56% of providers and 55% places are in for not-for profit residential homes (ACFA, 2021)
  • – 10 % government operated
  • – 34% are for profit/private

The number  of residential aged care providers has been decreasing due to industry consolidation while the number of government-funded places (beds) in aged care has gradually been increasing.

Industry consolidation has seen a reduction of one owner/one-site facilities and a corresponding increase in large for-profit providers building large facilities across multiple sites.

Other contextual data:
  • – 245,000 people lived in aged care facilities at some point in 2019/2020
  • – 65% of residents in aged care are women.
  • – Average age of residents is 85
  • – NB: 4,900 aged care residents are aged under 65.

Data from: Aged care snapshot 2021  (AIHW, 2021, accessed 25 Oct 2021).

References:

Aged Care Financing Authority, ACFA (2021) Report on the Funding and Financing of the Aged Care Sector. https://www.health.gov.au/sitesreport

Australian Institute of Health and Welfare, AIHW (2021) Australia’s welfare 2021, Aged care. Australian Government. https://www.aihw.gov.au/reports/australias-welfare/aged-care

Last updated: February 15th, 2022   Contributors: Sara Charlesworth  |  Wendy Taylor  |  Lee-Fay Low  |  

Austria

In 2015, about 850 nursing homes or residential care facilities provided 75 632 inpatient care places while 12 019 persons lived in alternative housing forms. Since 2000, the number of places in nursing homes or residential care facilities increased by more than 30%, as a result of population ageing and increasing demand for long-term care (BMGF, 2017k). Also, the number of hospitals and beds in rehabilitative care increased by around 40% between 2007 and 2016. In 2020 about 90,000 people are cared for in about 870 care homes (about 50% public, 25% private for-profit, 25% non-profit) (Schmidt et al. 2020).

References:

Schmidt, A. at al (2020), ‘The impact of COVID-19 on users and providers of Long-Term Care services in Austria’ Accessed at: Austria report ltccovid.org

Last updated: February 2nd, 2022

Brazil

Researchers from the ‘Frente Nacional de Fortalecimento à ILPI’ have published a study estimating the number of Long-Term Care Facilities (LTCFs) in the country in 7,029 facilities, noting that 64% of the 5 570 Brazilian municipalities do not have any LTCFs for older adults. (Lacerda TTB et al., 2021 https://doi.org/10.53886/gga.e0210060)

Last updated: January 6th, 2022   Contributors: Patrick Alexander Wachholz  |  

Canada

There are longstanding problems in the LTC homes in Canada, which have been the subject of many reports, commissions and enquiries. A review carried out for the Royal Society of Canada Working Group on LTC found that, between 1998 and 2020, there were 80 reports making recommendations on the Long-Term Care system and LTC homes. The most common recommendations were for increased funding (66.7% of reports), standards/regulation/audits of LTC quality of care (58.3%), and regulation/reform/standardisation of education and training for staff (https://f1000research.com/articles/10-87).

Last updated: January 31st, 2022

British Columbia (Canada)

89% of the rooms in LTC facilities are single-occupancy rooms, 7% are double-occupancy, and 4% are multi-bed rooms (3 or more beds). 76% of residents reside in single-occupancy rooms. In health authority owned facilities, 57% of residents reside in single-occupancy rooms compared to 85% in contracted facilities (source: QuickFacts2020-Summary.pdf).

Last updated: February 11th, 2022

Chile

There an estimated 25,000 older people living in registered care homes (1.4% of the population aged 65 or older). Of the 994 registered care homes, 16 are public, 181 are not-for-profit (with public subsidies) and the rest are for-profit (operating under supervision of the Ministry of Health) (Browne et al., 2020).

There are many unregulated care homes operating in an informal manner, probably as many as there are in the regulated sector. Prior to the COVID-19 pandemic there were no regulations or mechanisms to survey the Infection Prevention and Control capabilities of care homes (Browne et al., 2021).

References

Browne J, Fasce G, Pineda I, Villalobos P (2020) Policy responses to COVID-19 in Long-Term Care facilities in Chile. LTCcovid.org, International Long-Term Care Policy Network, CPEC-LSE, 24 July 2020.

Browne, J., Palacios, J., Madero-Cabib, I., Dintrans, P.V., Quilodrán, R., Ceriani, A. and Meza, D., 2021. Enablers and Barriers to Implement COVID-19 Measures in Long-Term Care Facilities: A Mixed Methods Implementation Science Assessment in Chile. Journal of Long-Term Care, (2021), pp.114–123. DOI: http://doi.org/10.31389/jltc.72

 

Last updated: January 6th, 2022

Denmark

In Denmark’s 98 municipalities, there are around 930 nursing homes with over 40,000 residents  (source: https://covid19.ssi.dk/overvagningsdata/ugentlige-opgorelser-med-overvaagningsdata).

The number of people in residential facilities and receiving home care has declined in both absolute and relative numbers in this decade.  In 2018, in absolute numbers there were 65,573 beneficiaries of long-term residential care services aged 65 years or older which equals to 5.8% of the population (source: https://www.dst.dk/en). In particular the proportion of people age 90 and over living in residential care facilities has fallen drastically, as 41.7 percent  lived in LTC facilities and senior housing in 2010 while the number fell to 33.1 percent in 2019 (source: https://www.dst.dk/da/Statistik/nyt/NytHtml?cid=30746#)

In 1984 it was made illegal to build any multiple bed residential services, therefore currently all nursing homes are private rooms with personal space, kitchenette and living space. Denmark is the only country in the EU in which the construction of traditional old-age and nursing institutions has been legally banned. There are five types of residential care facilities: nursing homes; sheltered housing; housing for older people; general homes for older people;  private care accommodation. The choice of specific type of accommodation depends on individuals’ preferences and needs, those choosing to live with their spouse or partner must be offered a facility suitable for two people (WHO, 2019).

References:

WHO (2019), ‘Denmark: Country case study on the integrated delivery of long-term care’. Accessed at: https://www.euro.who.int/2019/denmark-country-case-study-on-the-integrated-delivery-of-long-term-care-2019).

Last updated: February 3rd, 2022

France

Of the 7,502 LTCFs for older people, 50% are public, 31% are not-for-profits, and 24 are for-profit. In 2020, the National Assembly noted that the home care infrastructure is largely outdated, often with shared rooms (source: https://www2.assemblee-nationale.fr/static/15/pdf/rapport/i3633.pdf).

Last updated: January 6th, 2022

Germany

Responsibility for care homes

Regulation of the care home infrastructure is under State authority since it was devolved from the Federal level in 2006. Hence, minimal building and operational requirements as well as definitions as to what constitutes as care home (as opposed to more self-directed small-scale living arrangements for example) differ between the 16 Laender.

Demand of care homes

A report by the University of Cologne suggests that the increasing demand for residential care requires establishing additional as well as maintaining existing resources (Kochskämper & Pimpertz, 2015).

Care home providers

According to Federal reporting, the majority of care homes in 2019 (8,115 homes, 521,720 spaces) were owned by not-for-profit organisations, followed by private providers (6,570 homes; 393,308 spaces) and public providers (695 homes, 54,525 spaces) (Gesundheitsberichterstattung des Bundes, 2022).

Types of rooms & requirements

Following the implementation of single room quotas in care homes put in place in many of the Länder over a decade ago (which gave providers 10-15 years to make the necessary changes), care homes in several Laender have to provide a certain percentage of single rooms (e.g. 80% in North-Rhine Westphalia, 100% for new builds; Berlin 60%; Lower Saxony no quota). In Baden-Württemberg, every single room needs to have its own bathroom. Older buildings with shared bedrooms and without individual bathrooms should only be used for short-term stays. While this increases privacy of residents it also reduces the number of spaces. People who choose to live together (e.g. couples) can share double rooms of sufficient size (Deutschlandfunk, 2020; Aerzteblatt.de, 2019;  Wiedemann, 2019)

The requirements in terms of room-size and accessibility vary between the Laender. In Bavaria, for example, according to a newspaper article, single rooms should be at least 14 square meters, double rooms, 20 square meters. In addition, 25% of rooms need to be wheelchair accessible and have wheelchair accessible bathrooms (Wörmann, 2016).

Location of care homes

Research conducted by the Bertelsman group found that residential care across Germany are in good geographical proximity to other care homes: the longest average distance between care setting identified amounted to 8.2km. Within urban areas distances between care settings can be as small as 0.5km, while in rural areas distances may be larger (Hackmann et al., 2016).

References

Aerzteblatt.de (2019) Baden-Württemberg lockert Einzelzimmervorgabe für Pflegeeinrichtungen. Available at: https://www.aerzteblatt.de/nachrichten/105668/Baden-Wuerttemberg-lockert-Einzelzimmervorgabe-fuer-Pflegeeinrichtungen (Accessed 31 January 2022)

Deutschlandfunk (2020) Einzelzimmer in der Pflege/ Mehr Privatsphäre, weniger Plätze? Available at: https://www.deutschlandfunk.de/einzelzimmerquote-in-der-pflege-mehr-privatsphaere-weniger-100.html (Accessed 31 January 2022)

Gesundheitsberichterstattung des Bundes (2022) Pflegeheime und verfügbare Plätze in Pflegeheimen. Gliederungsmerkmale: Jahre, Region, Art der Einrichtungen/Plätze, Träger. Available at: Ad-hoc-Tabelle (gbe-bund.de)(Accessed 31 January 2022)

Kochskämper, S. & Pimpertz, J. (2015) ‘Herausfoderungen an die Pflegeinfrastruktur‘ Institut der deutschen Wirtschaft Köln. Available at: IW-Trends_2015-03-04_Kochskaemper_Pimpertz.pdf (iwkoeln.de) (Accessed 5 February 2022).

Last updated: February 13th, 2022   Contributors: Klara Lorenz-Dant  |  Thomas Fischer  |  Kerstin Hämel  |  

Iceland

There has been an important effort to upgrade care homes. Whereas in 2005 just half of people in care homes were in single rooms, and 29% had a private bathroom, by 2013 83% were in single rooms. The emphasis, since a new policy approved in 2008 is to build smaller units (for 6 to 10 people) with private rooms and and a common area for residents and staff. Minimum standards for the construction and running of care homes were issued in 2013.

(Source: Sigurveig H. Sigurdardottir, Omar H. Kristmundsson & Steinunn Hrafnsdottir (2016) Care of Older Adults in Iceland: Policy Objectives and Reality,Journal of Social Service Research,42:2, 233-245, DOI: 10.1080/01488376.2015.1137535)

Last updated: January 6th, 2022

Israel

As of 2017, amongst OECD countries, Israel had one of the lowest numbers of LTC beds available in its hospitals at 23.6 beds per 1000 people aged 65+ (the OECD average is 47.2 beds) (source: OECD). Notably, The proportion of people aged 65+ who receive LTC in institutions in Israel is the lowest among OECD countries (under 2%), while the number of recipients of care in the community is among the highest in these countries (source: Muir, 2017).

Last updated: January 6th, 2022

Italy

The actual number of nursing homes in Italy is unknown: different institutional sources indicate distinct values. In particular, the Interior Ministry estimated that there were 4,629 nursing homes for dependent older people in 2019 (data confirmed also by the National Committee for the guarantee of people deprived of their freedom – Garante Nazionale dei diritti delle persone private della libertà personale). The National Health Institute provides data on 3,417 nursing homes for people living with dementia. The Ministry of Health considers 3.475 residential centers, which include nursing homes, care homes, hospice and a blurry “other type”. Such inconsistency between numbers makes it difficult to build up a comprehensive picture of the service supply.

Also the number of service providers is uncertain, estimates talk about 1.927 companies. As concerns nursing homes’ features, the Observatory on nursing homes from one of Italy’s largest trade unions pointed out that:

  • 10,3% NHs count less that 20 beds;
  • 33,1% NHs have 21 to 50 beds;
  • 38,9% NHs have between 52 and 100 beds
  • only 17.7% of NHs dispose of over 100 beds.

The average nursing home counts 67,5 beds. Moreover, the large majority (70%) of NHs is managed by private providers – generally in accreditation regime -, 38,2% are for profit companies, 6% are public owned foundations, 15% are NGOs. 14% of NHs are directly managed by municipalities or Local Health Authorities. On average, each provider manages 2,07 nursing homes and 140 beds. Hence, the typical nursing home is quite small and managed by a private provider which received an accreditation from the public sector.

The distribution of nursing homes is diversified and heterogeneous throughout the national territory, with strong consequences for equity in access. The table below shows the take up rate of care home beds with respect to the number of people with functional dependency aged 75 and over in each region, representing the population most likely to consider nursing home care.  the most vulnerable and likely target for such service

The distribution of the rate follows the Italian geography: Southern regions have the lowest rates; regions from the Centre reach middle values and the Northern regions have the highest take-up values. For example in Trento, there are 25 beds for each person aged 75 with dependency, compared to 0.65 in Basilicata, signalling the almost total absence of care home services in some areas of the country.

Region Take up rate of nursing homes’ beds with respect to dependent over75 residents in the region (2016)
Molise 0,26%
Basilicata 0,65%
Sicily 0,69%
Puglia 2,57%
Calabria 2,78%
Abruzzo 2,73%
Campania 0,73%
Marche 5,89%
Valle d’Aosta 0,25%
Tuscany 6,28%
Umbria 5,12%
Friuli – Venezia Giulia 15,36%
Liguria 9,73%
Emilia – Romagna 9,61%
Veneto 17,88%
Trento 25,66%
Lazio 2,85%
Sardinia 1,03%
Bolzano/Bozen 24,21%
Piedmont 18,15%
Lombardy 18,97%
References:

Berloto, S., Fosti, G., Longo, F., Notarnicola, E., Perobelli, E., Rotolo, A. (2019). La rete dei servizi di LTC e le connessioni con l’ospedale: quali soluzioni per la presa in carico degli anziani non autosufficienti? In Cergas (Eds.), Rapporto OASI 2019. Retrieved from: Cap5OASI_2019.pdf (unibocconi.eu)

Fosti G, Notarnicola, E. and Perobelli, E. (2021), Le prospettive per il settore socio-sanitario oltre la pandemia. Rapporto Osservatorio Long Term Care 3. CERGAS, Università Bocconi. Retrieved from: il+welfare+e+la+long+term+care+in+europa+cover.pdf (unibocconi.it)

Garante Nazionale dei diritti delle persone private della libertà personale (2020). Atto di sindacato ispettivo n° 3-01482.

Istituto Superiore di Sanità (2020). Mappa dei servizi.

Ministero della Salute (2021). Annuario Statistico del SSN. Anno 2019.

Ministero dell’Interno (2019). Le statistiche ufficiali del Ministero dell’Interno. Strutture per anziani. Ed. 2019.

Last updated: February 4th, 2022   Contributors: Eleonora Perobelli  |  Elisabetta Notarnicola  |  

Japan

The majority of nursing care facilities are run by non-profit social welfare or medical institutions (for profit organisations are restricted from entering the care market for the individuals with high needs). The rest of the market operates with a mixed market of provision, ownership types and sizes. For-profit assisted living facilities tend to cater to the more independent and hence less vulnerable population. They cannot provide LTC services unless they are specially licensed by the respective prefectural governments to do so, even if they have a licence, such facilities have to contract external licensed LTC service providers if the residents need nursing care. Providers are paid according to a national fee schedule, so they compete on quality and convenience, not price.  All providers must be licenced by the prefectural government (Estevez-Abe et al. 2021; covid19_and_japanese_ltcfs.pdf (harvard.edu).

References:

Margarita Estévez-Abe and Hiroo Ide. (2021). “COVID-19 and Japan’s Long-Term Care System.” LTCcovid.org, International Long-Term Care Policy Network, CPEC-LSE, February 27, 2021. Retrieved from: ltccovid.org

 

Last updated: February 10th, 2022

Netherlands

Care homes are distinguished by whether they have an WLZ (Wet langdurige zorg, LTC) accreditation. These mostly include nursing homes and residential care homes with a nursing department. Care homes without a WLZ accreditation do not provide nursing care or medical treatments, but are residential homes that provide small-scale elderly housing and apartments linked to nursing homes, in which additional care can be provided as needs increase. In addition, there are private care homes for more affluent residents who contribute more to the costs of housing and facilities (such as entertainment). There is also small-scale housing where people pool their WLZ cash (provided as a personal budget) and which are self-organised or provided by entrepreneurs. Nearly 114,000 people aged 65 and over live-in residential care and nursing homes (Bruquetas-Callejo and Böcker, 2021).

References:

Bruquetas-Callejo, M., Böcker, A. (2021) Governmental response to the COVID-19 pandemic in Long-Term Care residences for older people: preparedness, responses and challenges for the future MC Covid 19 Working Paper 11/2021 

Last updated: February 1st, 2022

Republic of Korea

Providers of institutional care facilities are mostly private; the majority are individual-owned, small-size homes, and their numbers have rapidly increased, resulting in fierce competition (source: https://www.sciencedirect.com/science/article/pii/S016885102030275X). Services comprise residential care homes, long term care hospitals, and community services. There has historically been a reliance on institutional care, and in 2018 the Government announced a “Community Care” policy, to shift care to home and the community.

The recent outbreak revealed that care institutions are particularly vulnerable to COVID-19 for the following reasons: (a) the high population density of long-term care hospitals: the number of beds in one room is 5.12 on average in long-term care hospitals compared to 3.61 in general hospitals, (b) difficulties in requiring people with dementia or respiratory disease to observe needed hygiene and/or to wear masks; (c) the pre-existing health conditions of most residents in care institutions that make them more susceptible to infection (source: https://www.tandfonline.com/doi/full/10.1080/01634372.2020.1797977).

Last updated: January 6th, 2022

Singapore

Singapore relies heavily on community-based care, however older adults who cannot receive care appropriate for their needs at home are able to seek accommodation in a Long-Term Care Facilities (LTCFs). Singapore has over 16,000 LTCF places as of 2019 of which 40% are run by the government, 37% by non-profit organisations and 23% by the private sector (Irving and Bloom, 2020).

Public and non-profit run long term care facilities in Singapore are particularly vulnerable to infectious diseases due to their infrastructure: most facilities resemble dormitory-style housing shared by  between roughly 6 and 12 residents living in close proximity, with communal facilities. There is more variation in the layout of private nursing homes: some have dormitory-style living conditions that have as many as 30 residents; others have single or double private rooms. Most public and non-profit LTCFs have substantial subsidies from the government (Goh et al., 2022).

References:

Goh, H.S.; Tan, V.; Lee, C.-N.; Zhang, H.; Devi, M.K. (2022) Nursing Home’s Measures during the COVID-19 Pandemic: A Critical Reflection. Int. J. Environ. Res. Public Health, 19, 75. https://doi.org/10.3390/ijerph19010075

Irving and Bloom (2020) COVID-19, Older Adults and Long-Term Care in the Asia Pacific. Report prepared for HelpAge International Asia Pacific. https://ageingasia.org/wp-content/uploads/2020/12/COVID_LTC_Report-Final-20-November-2020.pdf

Last updated: February 11th, 2022

Spain

According to the IMERSO report Social services aimed at older people in Spain (December, 2020), care homes are considered as Residential Care Services. They offer accommodation and support to older people on a permanent or temporary basis. Residential Centres are classed as social facilities that offer accommodation and specialized care to elderly people who, due to their family, economic and social situation, as well as their personal autonomy limitations, cannot be cared for at home.

The weekly IMERSO report on the impact of Covid-19 in residential centres, states that care homes can be classed in the following ways:

  • Residential centres for the elderly
  • Residential centres for people with disabilities
  • Other permanent accommodation for social services aimed at the above groups.

Autonomous Communities have responsibility for care homes, and this contributes to the care home sector being remarkably heterogeneous and complex. This is due to the differences in each autonomous community’s criteria about what constitutes a care home for older people or people who are eligible for public care (Abellán García et al., 2019).

In Spain, there are 5,529 centres (1,451 publicly owned, and 4,078 privately owned) with a total of 389,677 beds, of which a total of 246,303 (63.2%) have public funding. The remaining 143,734 (26.8%) are privately financed. In general terms, the coverage index for all centres is 4.19 (number of places/population>=65)*100). Of this, 2.65 corresponds to public centres, and 1.54 to privately financed centres.

The weekly IMERSO Report noted that as of 3rd June 2022 there are a total of 353,823 people living in residential centres, with 85.8% living in residences for the elderly. The remaining 14.2% live in residential centres for people with disabilities, and other permanent social services accommodation. The report also noted that 71% of care home residents are women, and 79.3% are over 80 years old. The annual public price of a place in a residential centre is estimated at €18,839.62, of which the beneficiaries contribute around €8,020.13 (42.6% of the total price).

The Community of Madrid has the highest proportion of private care homes (86.8%), followed by Catalonia (85.1%) and the Basque Country (74.1%) (IMSERSO, 2020). The average number of beds in care homes in Spain is 70.2, representing a notable increase compared to 2009 when centres with fewer than fifty beds prevailed (Comas-d’Argemir et al., 2021).

In 2020 three in every four long term care facilities in Spain were privately run and the fees for many residents were publicly funded. Mas Romero et al (2020) noted that the fees received by the care homes have not increased for a long time, a result of austerity measures, resulting in many private facilities making cuts to maintain their profits, for example by operating with minimum staff. They also identify this as a factor that may have affected the ability of care homes to respond to the challenges of COVID-19.

Despite concerns about large care homes (IMSERSO, 2009), the macro-residence model has been implemented especially in the Community of Madrid, where 41.9% of the centres have more than one hundred beds (compared to 17% in Catalonia and 16% in the Basque Country) (Abellán García et al., 2021). There are seventeen care homes that exceed three hundred places, and the largest has no less than 604 places. That is the case in public and privately-owned centres (Comas-d’Argemir et al., 2021).

References:

Abellán García, Antonio; Aceituno Nieto, María del Pilar y Ramiro Fariñas, Diego (2019): Estadísticas sobre residencias: distribución de centros y plazas residenciales por provincia. Datos de julio de 2019, Informes Envejecimiento en red nº 24, Enlace.

Abellán García, Antonio; Aceituno Nieto, María del Pilar; Fernández Morales, Isabel y Ramiro Fariñas, Diego (2020): Una estimación de la población que vive en residencias de mayores, Informes Envejecimiento en red, Enlace.

Comas-d’Argemir, Dolors; Legarreta, Matxalen y García Sainz, Cristina (2021), Residencias, las grandes olvidadas, en en Comas-d’Argemir, Dolors y Bofill-Poch, Sílvia (eds.) (2021): El cuidado importa. Impacto de género en las cuidadoras/es de mayores y dependientes en tiempos de la Covid-19, Fondo Supera COVID-19 Santander-CSIC-CRUE Universidades Españolas. www.antropologia.urv.cat/es/investigacion/proyectos/cumade/

IMSERSO (2009): Servicios sociales para personas mayores en España. Enero 2009, Boletín sobre Envejecimiento. Perfiles y Tendencias, 43. Enlace.

IMSERSO (2020): Servicios sociales dirigidos a personas mayores en España (Datos a 31/12/2019), Ministerio de Derechos Sociales y Agenda 2020, Enlace.

Mas Romero M, Avendaño Céspedes A, Tabernero Sahuquillo MT, Cortés Zamora EB, Gómez Ballesteros C, et al. (2020) COVID-19 outbreak in long-term care facilities from Spain. Many lessons to learn. PLOS ONE 15(10): e0241030. https://doi.org/10.1371/journal.pone.0241030

Last updated: June 27th, 2022   Contributors: Carlos Chirinos  |  Adelina Comas-Herrera  |  Sara Ulla Díez  |  

Catalonia (Spain)

In Catalonia, according to data from 2016, people living in an assisted living facilities, compared to the entire population over the age of 64, have greater dependence and clinical complexity and are on average 10 years older than those who do not live there (85.7 years vs. 75.7 years). The average age of patients admitted to a nursing home increases every year, with women being admitted on average almost 3 years older than men. However, people in assisted living facilities have more associated pathology, with dementia being up to 10 times higher than for people over the age of 64 in the general population (CAMFIC & AIFICC, 2016).

Catalan Long-Term Care facilities can have public, private or subsidized places. The facilities that are part of the Catalan Social Services System (public and private ownership), that is, that have been authorized by the DTASF or the DS (in the case of drug addiction therapeutic communities) are intended for 4 large groups of people and various residential resources are identified for:

  1. Older people:
    1. Assisted residence for the older people on a temporary or permanent basis.
    2. Sheltered housing for the older people on a temporary or permanent basis.
    3. Temporary or permanent home for the older people
  2. People with disabilities:
    1. Residences and Homes Residences for people with intellectual disabilities.
    2. Residences and Homes Residences for people with physical disabilities.
  3. People with mental illness and / or addictions:
    1. Residences for people with mental illness.
    2. Homes Residences for people with mental illness.
    3. Therapeutic communities and reintegration flats for the care of people with drug addictions.
    4. Residences for Children and Adolescents with Autism Spectrum Disorder.
  4. Child under custody:
    1. Educational Residential Centers.
    2. Residential Center for Intensive Education Action.
    3. Reception Centers.
    4. First Aid and Emergency Services.

According to 2019 data published by the Consejo Superior de Investigaciones Científicas (CSIC) in Catalonia, there were a total of 62,015 places for the older people in facilities, 12,601 (20.3%) publicly owned and 49,414 privately owned (79.7 %). (CAMFIC &AIFICC, 2016).

References: 

CAMFIC & AIFICC (2016) Model d’atencio sanitaria a les residencies de Catalunya.

Last updated: March 10th, 2022   Contributors: Cèlia Estruch  |  

Sweden

The proportion of the older population living in care homes has been declining over time, from 20% of the population aged 80 and over in 2000 to 12% in 2019, and residents have become frailer, with 70% of them having dementia. On average, people live in care homes for 22 months and 20% die in the six months since moving in (Szebehely, 2020).

The majority of the municipal long-term care (LTC) institutions in Sweden are not dissimilar to private housing arrangements. Roughly three-quarters of LTC residents in institutional care have apartments with 1 or 1.5 bedrooms, a kitchenette, and a WC/ shower. Many also have balconies. The residents can make the apartment as home-like as possible as they provide all the furnishings. These apartments are usually located along a corridor that has a dining room and TV room attached to it, and there is often also a garden or similar outdoor space (Johansson and Schön, 2020).

References:

Johansson L. and Schön, P. (2020), ‘Governmental response to the COVID-19 pandemic in Long-Term Care residences for older people: preparedness, responses and challenges for the future: Sweden’, MC COVID-19 working paper 14/2021. http://dx.doi.org/10.20350/digitalCSIC/13701

Szebehely M (2020) The impact of COVID-19 on long-term care in Sweden. LTCcovid.org, Long-Term Care Policy Network, CPEC-LSE, 22 July 2020.

Last updated: February 13th, 2022

Thailand

Residential nursing care and specialist care are less available than community care, but they are  growing as well. Most residential care services for dependent older persons are found in private nursing homes and private hospitals, although some residential homes and homes for poor older persons are financed by the government and charitable organizations. The Ministry of Social Development and Human Security manages public homes called “Social  Welfare Development Centers for Older Persons,” which aim to provide shelter, but also a degree of care for residents if they develop care support needs.  Services at residential care facilities range from basic to complex care, including accommodations, help with personal hygiene, assistance with ADL and moving about, care that requires nursing skills, rehabilitation, day care, respite care, and hospice care (source: Country Diagnostic Study on Long-Term Care in Thailand (adb.org).

A survey of care home residents  living at two government long-term care centres during August 2020 to October 2020 found that most residents (82.5%) lived in shared rooms (government financed rooms) and the median length of stay was 5 years (Srifuengfung et al., 2021).

References:

Srifuengfung, M., Thana-Udom, K., Ratta-Apha, W., Chulakadabba, S., Sanguanpanich, N., & Viravan, N. (2021). Impact of the COVID-19 pandemic on older adults living in long-term care centers in Thailand, and risk factors for post-traumatic stress, depression, and anxiety. Journal of Affective Disorders, 295, 353–365. https://dx.doi.org/10.1016/j.jad.2021.08.044

Last updated: January 14th, 2022

England (UK)

Community support services for people living with dementia

A survey of people living with midl-to-moderate dementia and their care partners in Britain found low rates of receipt of dementia support services, with people who were female, older, and with lower education level receiving fewer services (van Horik et al, 2022).

References

van Horik J.O., Collins R., Martyr A., Henderson C., Jones R.W., Knapp M., Quinn C., Thom J.M., Victor C., Clare L., on behalf of the IDEAL Programme Team (2022) Limited receipt of support services among people with mild-to-moderate dementia: Findings from the IDEAL cohort. International Journal of Geriatric Psychiatry. 37(2). https://doi.org/10.1002/gps.5688

 

Last updated: March 21st, 2022   Contributors: Adelina Comas-Herrera  |  

England (UK)

Number of care homes and beds

The Office for National Statistics estimated that, between 2019 and 2020, there were 462,460 care home beds in England. Of these, 84.7% (391,927) were occupied. 36.7% of residents were self-funders (paid for their care privately). The Care Quality Commission (CQC) reported that occupancy levels fell during the pandemic, reaching a low of 80% during the summer of 2020.

The Future Care Capital estimated that in 2019 there were 15,661 care homes. Their report found that the number of registered care home beds has declined over time and that, at the same time, there has been a shift towards larger care homes, with the average size of care homes increasing from 26.8 beds in 2014 to 29.2 in 2019. Similarly, Kings Fund report indicated that number of care home places declined between  2012 and 2020, care home places declined from from 11.3 to 9.6 and nursing home places from 5.2 to 4.7 for every 100 people over the age of 75. There report also noted that there was a lot of regional variation.

Sector of ownership and quality

In terms of market composition, the Future Care Capital report estimated that, in 2019, 83.4% of care homes were private for-profit, 2.8% were public and 13.6% were not-for-profit. In 2019, just under 17% of all care home beds were owned by the five largest groups of providers. Quality of care,  is highest among not-for-profit providers, with 16.4% inadequate or requiring improvement by the CQC, compared to 24.8% for private companies. Care homes with fewer than 30 beds tended to be rated better than larger care homes.

Last updated: March 2nd, 2022   Contributors: Adelina Comas-Herrera  |  

United States

The Center for Disease Control (CDC) studies LTCFs with regards to the following categories: adult day services centres, nursing homes, residential care communities, hospices and home-health agencies. State-by-state information on the number of each kind of LTCF, the number of people they serve, ownership (i.e. for-profit or governmental), certification, staffing, and services provided can be found in the CDC’s National Post-Acute and LTC Study (source: https://www.cdc.gov/nchs/data/nsltcp/2016_CombinedNSLTCPStateTables_opt.pdf).

Last updated: February 11th, 2022

1.09. Community-based care infrastructure

Overview

Many countries have attempted to invest more resources in homecare and
community-based care, away from residential care. Despite the overall shift towards care at home, such services are  limited in several Eastern and Southern European countries as well as Canada, Korea and US. Conversely, care in the community is more prevalent in several Nordic  countries, Japan or New Zealand. However, even if on average community care is available in a country, access to such care is often hampered in rural and remote areas (Marczak et al. 2015; 2021 Long-term care in the EU).

References:

Marczak J, Wistow G. (2015) Commissioning long –term care in OECD, in Gori C, Fernandez JL, Wittenberg R (eds) Long-Term Care Reforms in OECD Countries: Successes and Failures, Policy Press, Bristol

International reports and sources

OECD

Gori C, Fernandez JL, Wittenberg R (2015) Long-Term Care Reforms in OECD Countries: Successes and Failures, Policy Press, Bristol

Europe

Some information on care in the community in EU countries can be found in the following reports:

European Commission (2016) Joint Report on Health Care and Long-Term Care Systems & Fiscal Sustainability.

2021 Long-term care report Volume 1 and Volume 2 – Publications Office of the EU

Australia

The majority of older people who use government-subsidised community care receive services through two major programs:

The CHSP provides entry level care for Australian aged 65 older and indigenous Australian aged 50 or over to live independently at home. Services include some personal care, shopping, help with meals, taking people to appointments and community nursing. In 2018-19 there were:

  • 1,452 CHSP providers
  • 840,984 clients in the CHSP
  • Approx. 209 individuals per 1,000 people in the target population

The HCPP provides support for people who need higher levels of care, especially personal care. It is an individualised cash for care scheme, where the government subsidy is reduced by means-tested contributions from ‘consumers’  which depend on that person’s assessed income. These fees vary between $15.81 to $31.63 per day. People may also be asked to pay a ‘basic daily fee’, the level of which depends on the package level. Where the daily fee is charged, it  is added to the government subsidy.

At 30 June 2021 there were

  • 939 approved HCPP providers
  • 195,699 people had access to a Home Care Package (HCP)
Accessing services:

Older people must be first assessed by an aged care assessment officer  to determine the package level. There are four levels of packages which range from Level 1 –  to Level 4  per annum. There are price differences between providers for various services (although records of median prices charges are kept (see Duckett et al., 2021, figure 2.3 and the national summary of home care prices) and there are differences in the amount of administration and care management fees charged. Such fees average 25% of the total value of a package and they be up to 50% of the HC package in some instances.

The number and level of packages in the HCPP are effectively capped and there are long waiting lists for both assessment and for access to services when a person has been allocated a package. As at June 2021, there were  53,203 older people waiting for a HCP at their approved level (Department of Health, p.15).

References:

Deloitte Access Economics (2020) Commonwealth Home Support Programme Data Study. Department of Health, Australia. https://www.health.gov.au/sites/default/files/documents/2021/06/commonwealth-home-support-programme-data-study_0.pdf

Department of Health (2021) Home care packages program. Data report 4th Quarter 2020-21. Australian Government. https://gen-agedcaredata.gov.au/www_aihwgen/media/Home_care_report/Home-Care-Data-Report-4th-Qtr-2020-21.pdf

Duckett, S. and Swerissen, H. (2021). Unfinished business: Practical policies for better care at home. Grattan Institute. https://grattan.edu.au/wp-content/uploads/2021/12/Unfinished-business-Practical-policies-for-better-care-at-home-Grattan-Report.pdf

Last updated: February 15th, 2022

Austria

There is a wide range of community-based services available across Austria, both provided in the home of care-users and in community centers, although the availability and type of services available vary drastically across and within federal states. A range of long-term care mobile services are available for supporting personal care (i.e. personal hygiene, eating, etc.) and household maintenance in the home of the care user, carried out and coordinated at the regional and municipality level, including: food delivery (i.e. meals on wheels), driving services, mobile therapeutic services, cleaning services, repair services, and laundry services. Social services also exist, such as peer-to-peer advice provided by those with disabilities and visiting services for older people who are lonely (sources: https://www.oesterreich.gv.at/themen/soziales/soziale_dienste/1/Seite.1210130.html and https://www.oesterreich.gv.at/themen/soziales/soziale_dienste/1/Seite.1210140.html).

Day care centres, which are available from Monday to Friday, are another community-based care option for older people. These centers offer a wide range of services, including social contact, skills training, professional care, therapies, and general support (source: https://www.gesundheit.gv.at/leben/altern/wohnen-im-alter/altersgerecht-wohnen).

24-hour care, in which care is provided around the clock by a live-in carer (typically of migrant origin), is also a large part of the community-based care in Austria and provides a relatively cheaper option for individuals with extensive care needs to stay in their home (Aulenbacher et al., 2020).

References

Aulenbacher, B, Leiblfinger, M, Prieler, V (2020) ‘The promise of decent care and the problem of poor working conditions: Double movements around live-in care in Austria.’ Socialpolicy.ch – Journal of the Division of Sociology, Social Policy, Social Work 2: 2.5.

Last updated: February 2nd, 2022   Contributors: Cassandra Simmons  |  

Chile

There is a home-based care programme for people with severe dependency and also to provide health care to people who cannot access healthcare centres. Since 2016, the Ministry of Social Development has implemented a Local Support and Care Network, as part of a set of programmes towards a National System of Care. There are also initiatives to support family carers through cash benefits and respite care (Browne et al., 2020).

References

Browne J, Fasce G, Pineda I, Villalobos P (2020) Policy responses to COVID-19 in Long-Term Care facilities in Chile. LTCcovid.org, International Long-Term Care Policy Network, CPEC-LSE, 24 July 2020.

Last updated: February 1st, 2022

Denmark

The number of people receiving home care has declined over the last decade. Municipalities provide social services for older people and overall, older people can access a wide range of social services that enable them to remain in their homes even if they are chronically or terminally ill. These services include day care services, extensive home help and nursing care.

In January 2015, a new legislation came mandated all municipalities to consider first whether a person applying for home support could instead receive reablement services. Reablement is often offered in the form of a 12-week exercise training course, provided by multidisciplinary teams with an involvement of physiotherapists, in which the older person together with the care worker identifies and works towards achieving one or more goals such as, showering alone or cleaning home. Individuals receive home support only after the reablement failed to help. Municipalities offer services in the individual’s home or in rehabilitation centres. Rehabilitation services are included in the mandatory healthcare agreements between the administrative regions and the municipalities, and they ensure cooperation between the various service providers.

Individuals discharged from hospitals can receive follow-up home visits from general practitioners or nurses, which takes place a week after discharge and may be repeated at three and eight weeks after discharge if additional support is needed (WHO, 2019).

References: 

WHO (2019), ‘Denmark: Country case study on the integrated delivery of long-term care’. Accessed at:  https://www.euro.who.int/en/health-topics/Life-stages/healthy-ageing/publications/2019/denmark-country-case-study-on-the-integrated-delivery-of-long-term-care-2019

Last updated: February 1st, 2022

Finland

The Finnish government is currently proposing reforms to the Social Welfare Act that aim to strengthen and expand home-based care, including widening the services on offer and adopting measures to secure sufficient staff.

Last updated: February 1st, 2022

Germany

Differences in care infrastructure

A study conducted by Bertelsmann found that the care infrastructure differs across Germany. In many areas in East Germany, domiciliary care is more dominant, while in Hessen and in the Rhineland a disproportionate amount of care is provided by family carers. The study further found that in the Federal States located in the South a more balanced provision of services is prevailing, while in Schleswig-Holstein and Mecklenburg Western Pomerania more people receive care in residential care settings. Further analysis provided in the report suggests that the less purchasing power is available in a region, the more unpaid care is being provided. The more unpaid care is being provided, the lower are expected future staffing shortages (source: https://www.bertelsmann-stiftung.de/fileadmin/files/BSt/Publikationen/GrauePublikationen/Studie_VV_FCG_Pflegeinfrastruktur.pdf).

Future feasibility

Another report raises questions regarding the future feasibility of community-based care as it often requires unpaid support in addition to domiciliary and community services. Increasing numbers of people living on their own, increasing number of people without children as well as potential implications of an increasing participation of women in the labour force poses challenges to the availability of unpaid carers.

A second important component of community-based care includes day and night (part-residential) care. These services also include the transport between people’s homes and the day care centres. As with other LTC services in Germany, people with LTC needs can receive financial support for attending these services depending on the assessment of their level of care need (source: https://www.bundesgesundheitsministerium.de/tagespflege-und-nachtpflege.html).

Care statistics for 2019 show that 14.5% of people with (assessed) LTC needs receive day care services. Since 2017, the number of day care places has increased by 24.3%.

Last updated: February 12th, 2022   Contributors: Klara Lorenz-Dant  |  Thomas Fischer  |  Kerstin Hämel  |  

Poland

Community services include home-based care comprised of nursing services provided through the health sector and services provided through the social sector. Home care services cover assistance with everyday activities, personal hygiene, tasks related to housework, nursing (if prescribed by a physician), and support in social networking. Specialist home care is adjusted to the specific medical and rehabilitation needs of the recipients, and services are provided by qualified personnel, such as physiotherapists. An important and recently developing type of care is day care centres offering leisure time activities for older people and people with disabilities. Activities ranging from education, culture, to excursions are provided for persons living at home, whose family members are not able to provide care because of work responsibilities, during working hours (Golinowska et al. 2017).

References:

Golinowska, S., Sowa-Kofta, A. (2017) ‘The Polish policy landscape. Retrieved from CEQUA: Poland Country Report

Last updated: February 10th, 2022   Contributors: Joanna Marczak  |  

Singapore

Singaporean LTC relies heavily on home-based and community care services and aims to reduce unnecessary utilization of institutional care (source: https://www.adb.org/sites/default/files/publication/637416/singapore-care-system-population-aging.pdf). In 2019, there were 7,600 day care places, 10,300 home care places and 1,986 community hospital beds in Singapore (source: Analysis of variable COVID-19 mortality among older people in Asia Pacific, by forms of long-term care (ageingasia.org).

There are different types of day care services in Singapore. These include: ‘senior care centres, day rehabilitation centres, general and enhanced dementia day care and day hospices’. Home care services for bed-bound older people living in their own homes include ‘medical, nursing, therapy, personal care and hospice’ are. In addition, there are meals-on-wheels services and Medical Escort and Transport Services available. Community hospitals offer short-term (2-4 weeks) rehabilitative inpatient care for people who experienced acute medical care needs. It is their role to facilitate transition back into the community (source: https://ltccovid.org/wp-content/uploads/2020/08/The-COVID-19-Long-Term-Care-situation-in-Singapore-27July-2020.pdf).

Last updated: February 1st, 2022

Sweden

Long-term care in Sweden is heavily focused on the provision of community services. The deinstitutionalisation of old age care started with the ‘ageing in place’ reform policy in 1992, after which municipalities started to downsize the number of institutional beds they provided for elderly members of the population in need of care (source: European Commisssion / ESPN report). In 2019, over 160,000 older people received care at home; almost double the 82,000 individuals who were provided institutional care. It should be noted that some people – such as the disabled or those with dementia – are more likely to need institutional care, and that an over-reliance on home-based care tends to place more burden on informal carers, most of whom are women (Johansson and Schon, 2020).

References:

Johansson L. and Schön, P. (2020), ‘Governmental response to the COVID-19 pandemic in Long-Term Care residences for older people: preparedness, responses and challenges for the future: Sweden’, MC COVID-19 working paper 14/2021. http://dx.doi.org/10.20350/digitalCSIC/13701

Last updated: February 10th, 2022

Thailand

For many years, Thailand has explored models of home- and community-based care, with an emphasis on services provided at home, initiatives over the years including training volunteers to provide care services in the community (e.g. home visits, assistance with meals, assistance with taking medicine etc); and various integrated community-based care projects.  The Community-Based Long-Term Care Program, under the National Health Security Office (NHSO), started in 2016 and had provided care to some 193,000 older persons by 2018; there are plans to expand it throughout the country (source: Country Diagnostic Study on Long-Term Care in Thailand (adb.org).

Last updated: February 1st, 2022

Japan

Japanese formal LTC relies heavily on day care and homecare services. In 2014, 7.8% of those 65 or older used day care in Japan. In 2019, in absolute numbers there were 1,077,609 users of day care services and 971,432 users of home care services. Many day care service providers also accommodate overnight stays.

With the revision on Japan’s long-term care insurance law, current ageing health policies have shifted to a more population centric approach. Group activities called “Kayoi-no-ba” have been valued in Japan as a disability prevention initiative. The Kihon Checklist – a 25-item questionnaire – has been broadly used by health experts and researchers to assess frailty in Japan. However, a new 15-item questionnaire has been newly developed to identify frailty and other health-related problems in older people of 75 years and above. This will enable the provision of necessary support to frail individuals at any healthcare facility in local communities (Estevez-Abe, 2021; Kojima et al. 2021).

References:

Estévez-Abe, M., Hiroo Ide. (2021). “COVID-19 and Japan’s Long-Term Care System.” LTCcovid.org, International Long-Term Care Policy Network, CPEC-LSE, February 27, 2021. Retrieved from: ltccovid.org

Kojima, M., Satake, S., Osawa, A., & Arai, H. (2021). Management of frailty under COVID-19 pandemic in Japan. Global health & medicine3(4), 196–202. https://doi.org/10.35772/ghm.2020.01118

Last updated: February 10th, 2022   Contributors: William Byrd  |  

Spain

Spain characterises insufficient community support for people with moderate of sever needs who live in their own homes, moreover there are visible inter-regional disparities regarding the quality, coverage or funding of services, which creates unequal access to services. A high number of people with LTC needs receive cash allowances to family caregivers in lieu of services, which heightened the responsibility of families in providing care. Migrant care workers, often hired with no legal contract, often provide private care at home (source: CEQUA Spain Country report (filesusr.com)

Last updated: January 6th, 2022

sub-Saharan Africa

Because organized systems of LTC are generally lacking, families constitute the major source of care for older people who are no longer able to live independently. Numerous concerns about quality of care have been documented. These range from general neglect of older people to exclusion, marginalization, and abuse. Care inadequacies may result in older people being unable to maintain their functional ability or lead to depression or early death. Inadequacies in family care arise particularly in contexts of poverty and vulnerable employment. In these cases, the family members who provide long-term care lack the resources to give better care and are faced with a choice between neglecting their work, training or other economic activities or neglecting their dependent older relative (source: https://www.who.int/publications/i/item/9789241513388).

Last updated: January 6th, 2022

1.10. Workforce conditions: pay, employment conditions, qualification levels, shortages

Overview

Introduction: Who are LTC workers, where and how are they employed?

The LTC workforce includes specialized professionals (geriatricians, nurse case management workers, physiotherapists) as well as so-called low skilled care workers. In various countries, the latter group can make up, up to 70% of the LTC workforce responsible for helping older people with activities of daily living (ADLs) (OECD, 2020).

LTC workers are predominantly women and overall, the LTC workforce is ageing itself: in the EU in 2016, the median age of  workers in the sector was 45; in 2019 the share of employees aged 50 or over was close to 38 %. Where data is available it indicates that larger portions of the workforce are working in institutional settings. This reflects a lack of visibility of home care workers but also the distinction between formal and informal workers (source: WHO 2019 LTC report; 2021 Long-term care in the EU). Across the OECD, about 45% of LTC workers are in part-time employment and need to work in multiple jobs (OECD, 2020).

Challenges with attracting workers into LTC sector

Various sources provide a long list of reasons behind the current shortages of LTC Workforce and highlight challenges with future recruitment. For example, an OECD 2020 report  notes lack of professionalisation, limited career opportunities, limited support for training, as exacerbating the workforce shortages  (OECD, 2020).

Similarly, a WHO report quotes low wages and limited training relative to the health workforce, stress, onerous working conditions and a heavy workload that does not reflect their training, all make it hard to attract and retain people in the LTC sector. The report highlights that comprehensive and wide ranging set of  policies are needed to ensure a sustainable supply of LTC workers.

Workforce shortages

Workforce shortages are prominent in countries included in this report, and OECD as well as EU data indicate that most countries around the world are facing LTC staff shortages, although some (e.g. Eastern and Southern European region) more severely than others (e.g.  Nordic countries in Europe). Moreover, at the current pace of an ageing population, it is estimated that the need for LTC workers will need to increase by 40 – 100% just to maintain the current staff ratios, which are already often considered to be insufficient (OECD, 2020).

Migrant care workforce

An explorative comparative study into the situation of migrant carers and COVID-19 health workforce policies in selected EU countries (Kuhlmann et al., 2020) revealed that undersupply of carers coupled with cash-benefits and a culture of family responsibility may result in high inflows of migrant carers, who are channelled in low-level positions or the informal care sector. The sending countries are characterised by very low expenditure and density of LTC care together with strong family subsidiarity and a marginal role of LTC in the wider healthcare system. Consequently, the LTC workforce is poorly developed precisely in those countries, showing the strongest outflows of carers. Inter-governmental labour market arrangements on LTC migrant care may often reduce costs in high income countries, but they are threatening the aim of universal healthcare coverage in the sending countries and hamper the development of a sustainable LTC sector (copied from Kuhlmann et a., 2020).

Covid-19 made the fragile labour market arrangements of migrant carers visible, which may create new health risks for both the individual carer and the population. Country case studies further illustrate the new threats and challenges (examples below copied from Kuhlmann et al., 2020). The pandemic increases the risk of infection for the individual carer if travelling in times of lockdown, coupled with the risk of losing one’s job and income if travel is not permitted. It threatens the healthcare systems of the sending country, which is losing carers in a situation of a pandemic, when they are needed the most; and it threatens the provision of care in the destination country, as access and quality of care may worsen if borders are closed and the mobile carers have left. The pandemic has enhanced a debate over problematic global ‘production chains’ based on cheap labour and a lack of sustainability in European countries, especially in relation to medical protection material. However, very little attention has been paid so far to the ‘global care chains’ and the human resources for health involved in these chains. Finally, from a public health and system perspective, enhancing the mobility of carers through cross-border arrangements during a pandemic is highly problematic and may increase health risks and new outbreaks.

Two important policy recommendations are emerging:

  • – to include LTC migrant carers more systematically in public health and health workforce research and
  • – to develop European health workforce governance which connects health system needs, health labour markets and the needs of the individual migrant carers.
References:

Kuhlmann E, Falkenbach M, Klasa K, Pavolini E, Ungureanu M. Migrant carers in Europe in times of Covid-19: a call to action for public health-informed European health workforce governance, European Journal of Public Health, 2020;30(Suppl. 4):iv22-iv27; DOI:10.1093/eurpub/ckaa126

OECD (2020), Who Cares? Attracting and Retaining Care Workers for the Elderly, OECD Health Policy Studies, OECD Publishing, Paris, https://doi.org/10.1787/92c0ef68-en.

International reports and sources

There are a number of useful reports that discuss LTC workforce in different countries, including the following:

OECD 2020. Who Cares? Attracting and Retaining Care Workers for the Elderly

OECD Library_LTC workers

WHO 2019. Integrated Delivery of Long-Term Care

2021 Long-term care in the EU

Australia

In 2016, there are 366,000 paid workers (84%) and 68,000 volunteers (16%) delivering aged care. 66% of the paid workers were in direct care roles, including nurses and personal care workers (source: Care, Dignity and Respect report).

Australia has trained and supervises care workers to assist nurses with medicine management. Self-managed teams to give workers more flexibility and control have been shown to boost job satisfaction and reduce turnover (source: OECD).

Last updated: February 15th, 2022

Austria

In Austria more than 66,000 personal carers (mostly migrants from neighbouring countries) provide live-in care to around 33,000. About 47,100 staff provide care to care home residents and 18,300 provide home-based care. The share of social care staff who are migrants from neighbouring (Eastern European) countries has increased in recent years. These workers are registered as self-employed, but in practice they are dependent on brokering agencies in their home countries and have precarious working conditions as well as few entitlements to social protection and labour rights. The majority of these workers are women and work in alternate rotas of two weeks or a month (Leichsenring et al. 2021; Leiblfinger, M. at al. 2020).

References: 

Leichsenring, K., Schmidt, A.,  Staflinger, H. (2021) ‘Fractures in the Austrian Model of Long-Term Care: What are the Lessons from the First Wave of the COVID-19 Pandemic?’  Journal of Long-Term Care,  pp. 33–42. DOI: https://doi.org/10.31389/jltc.54

Leiblfinger, M. at al. (2020) ‘Impact of COVID-19 Policy Responses on Live-In Care Workers in Austria, Germany, and Switzerland’ Journal of
Long-Term Care, (2020), pp. 144–150. DOI: https://doi.org/10.31389/jltc.51

Last updated: February 2nd, 2022

Belgium

In Belgium, the Wallonia region allows personal care workers to perform nursing tasks when no other care options are available (OECD, 2020).

References:

OECD (2020) Who Cares? Attracting and Retaining Care Workers for the Elderly

Last updated: February 3rd, 2022

Bulgaria

Bulgaria established excellence programmes in LTC for nurses (OECD, 2020). However, the country, alongside other Eastern European countries, experiences so called  “care drain’ where many LTC workers moved to work in other EU countries, mostly because of better salaries and better working conditions (European Commission, 2021).

References:

OECD (2020) Who Cares? Attracting and Retaining Care Workers for the Elderly

European Commission (2021)  2021 Long-Term Care Report Trends, challenges and opportunities in an ageing society. Luxembourg: Publications Office of the European Union

Last updated: February 3rd, 2022

British Columbia (Canada)

Majority of LTC and AL health care workers in BC are represented by a union, the largest being The Hospital Employers Union (HEU) (source: https://news.gov.bc.ca/files/1.25.2021_LTC_COVID-19_Response_Review.pdf).

Normally, to become a health care assistant, one must complete six to eight months of post-secondary education at their own expense before applying for a position. Due to staffing shortages during COVID-19, BC has launched the subsidized Career Access Program, a sponsorship program where individuals will work as a health support worker while training to become a health care assistant. Applications for the program began in early 2021 (source: https://www2.gov.bc.ca/gov/content/economic-recovery/work-in-health-care; https://www.choose2care.ca/hcap/).

 

Last updated: February 11th, 2022

Ontario (Canada)

Focussing on Ontario, a published article traces the antecedents of the COVID-19 crisis in long-term care and documents experiences of frontline staff and family members of residents during the pandemic. They argue that the marginalization of both residents and workers in Ontario’s long-term care system over two decades has eroded possibilities for recognition of their personhood. They also question broader societal attitudes toward aging, disability, and death that make possible the abandonment of the frail elderly (Badone, 2021).

References:

Badone, E. (2021). From Cruddiness to Catastrophe: COVID-19 and Long-term Care in Ontario. Medical Anthropology: Cross Cultural Studies in Health and Illness40(5), 389–403. https://doi.org/10.1080/01459740.2021.1927023

Last updated: February 11th, 2022   Contributors: William Byrd  |  

Denmark

Social and health helpers and assistants represent most of the long-term care workforce. Physiotherapists and occupational therapists have increased in numbers during the past decade, particularly after the reablement programme was implemented. While the number of personnel has stagnated or sometimes declined in most residential settings, while there has been an increase by almost 10% of staff in employed in home help. Moreover, between 2005-2015 the number of staff working part time increased. There has also been a greater professionalization of the workforce: in 2016, 46% of the staff in residential care facilities had relevant qualifications that required training of more than two years as compared to 33% in 2005. As care needs of residents have increased, nursing home staff also experienced an increase in health, and nursing-related tasks. LTC workforce also reported higher work intensity (WHO, 2019).

The Danish Health Authority provides accreditation and licensing services for practitioners, including physicians, nurses, social and health care assistants, physiotherapists (Olejaz, 2012). Social and health helpers can become accredited after 1.5 years of training, including a basic course of 20 weeks and a period of alternating practical and theoretical courses. Social and health helpers can perform tasks related to support with personal care and hygiene as well as household chores. A further module of 32 weeks of theoretical training and 48 weeks of practice leads to the next level as social and health assistants. These can carry out nursing functions, including planning of activities. Social and health assistants may choose the traditional nursing education that encompasses 3.5 years for a university bachelor’s degree (Raholm et al. 2010). Modular training for personal carers is under development  for those seeking to access managerial roles or for nurse aides wanting to become nurses (OECD, 2020).

References:

OECD (2020) Who Cares? Attracting and Retaining Care Workers for the Elderly

Olejaz, M.,  Nielsen, A., Rudkjøbing, A., Okkels Birk, H., Krasnik, A., Hernández-Quevedo, C. (2012) Denmark: Health System Review. WHO European Observatory

Raholm, M., Birte Larsen HedegaardAnna LofmarkAshild Slettebo (2010).  Nursing education in Denmark, Finland, Norway and Sweden – from Bachelor’s degree to PhDJournal of Advanced Nursing

WHO (2019), ‘Denmark: Country case study on the integrated delivery of long-term care’. Accessed at: https://www.euro.who.int/2019/denmark-country-case-study-on-the-integrated-delivery-of-long-term-care-2019).

Last updated: February 3rd, 2022

Finland

Municipal outsourcing to the private and for-profit sector for provision of sheltered, round-the-clock LTC has significantly increased over the past decade; in recent years, reports of insufficient care and serious maltreatment in these spaces have been met with public outcry for their review. The Act on care services for older people is thus under reform and a minimum number (0.7) of nurses per clients will be required by April 2023. Municipalities appear to be struggling to maintain/keep up with growing need for more formal care services. Additionally, with the population aging and working-age population decreasing, there is a growing concern about the shortage of employees in LTC services (Forma et al., 2020).

References:

Forma, L., Aaltonen, M., Pulkki, J. (2020). ‘COVID-19 and clients of long-term care in Finland- impact and measures to control the virus’, LTCcovid, International Long-Term Care Policy Network, CPEC-LSE, 12 June 2020. Retrieved from: Finland: ltccovid.org

Last updated: February 10th, 2022

France

France reported to OECD that it increased wages in LTC and that this was associated with greater recruitment of workers, longer tenure and lower turnover. However, wage increases need to be financed and regulated. Otherwise, wage increases that are not matched by increases in resources lead to increased workload and duties. One-third of institution-based LTC workers were temporary agency workers (source: https://www.oecd.org/fr/publications/who-cares-attracting-and-retaining-elderly-care-workers-92c0ef68-en.htm).

The distribution of different workforce roles is as follows:  domiciliary care nurses (SSIAD), 117 093 in 2014; domiciliary care workers, registered with NFPs and public organisations, around 535 000 in 2011; private companies for domiciliary care employ approximately 4% of the workforce. There has been limited success with attempts at professionalisation to improve quality in delivery. There was no increase in staff to resident ratios in care homes between 2011-15 despite increase in demand. Diplomas have been developed over the years, and 62% of workforce has some level of qualification, but despite these workers report low levels of satisfaction and there are frequent strikes. Only 30% of the workforce is employed full-time and wages are low in the sector (c.882€/month, which is equivalent to minimum wage) (source: https://halshs.archives-ouvertes.fr/halshs-02058183/document).

Due to the limited attractiveness of the sector, especially in domiciliary care, 20% of demand for places could not be fully allocated in 2019, 25% of businesses have recorded a decrease in the number of supported places, and over 30% of directors of domiciliary care agencies have highlighted lack of staff as a direct cause of place refusals, moreover, 80% of directors think the situation is worsening. The existence of nursing roles in domiciliary care is an additional pressure, as the gap between pay has doubled (200€) (source: http://www.senat.fr/rap/r20-199-1/r20-199-11.pdf).

Last updated: January 6th, 2022

Pay

The average gross salary of LTC workers per month in Germany (in 2019) ranged between €2146-3032. Average income depended on the level of qualification and sector. Wage rates among those providing home care, on average, appeared to be slightly lower (€2039-2721) than among those working in residential care (€2182- 3099).

Even though salaries in the sector have increased by 28% since 2021, in comparison to the median salary of hospital nurses, LTC workers earn considerably less (Milstein, Mueller & Lorenzoni, 2021). Rothgang, Müller and Preuß (2020) investigated LTC workers’ income satisfaction. They found that the share of LTC workers who are unhappy with their incomes (almost half) is higher than among employees in other jobs (less than 30%). Among people working in care, 53% report having difficulty to live off their income. Among LTC workers, 52% think that their retirement pay will not be sufficient.

Employment conditions

Working conditions are considered poor, especially given the wages and social standing are low, while working hours are unfavourable and physical and psychological strain is high (Lückenbach et al., 2021).

A study found that in comparison with other jobs psychological burden of LTC workers was higher in a number the aspects compared. The report also showed that while the majority of care workers felt their job was important, only 53% of care workers reported that they felt their work was socially recognized (Rothgang, Müller & Preuß, 2020).

Qualification levels

By law, 50% of residential care workers are required to be trained as skilled workers. This requirement, however, is not always met. From March to October 2020 quality controls were suspended during the pandemic to relieve the burden on domiciliary and residential care (Bundesministerium für Gesundheit, 2020; Medizinischer Dienst, 2020).

Shortages

LTC workforce shortage is one of the main concerns. Projections estimated that Germany will have a shortage of 263,000 full time care workers by 2030 (Lückenbach et al., 2021). In response to this shortage, the Care Staff Strengthening Act created posts for 13,000 additional care workers in residential care. Furthermore, the framework of the ‘Act to Improve Healthcare and Nursing’ secured funding for 20,000 additional nursing assistant positions (European Commission 2021). In addition, efforts to co-operate with countries, especially Mexico, the Philippines and Kosovo, have been made around improving vocational training and recruiting LTC workers (European Commission, 2021).

However, the creation of these additional 13,000 care workers in residential care settings has been criticised as too low and efforts to make jobs more attractive through pay increase have been insufficient to attract people. This law was prepared in 2018 and came into effect in large parts in 2019 (VDEK, 2021).

A 2020 report on care (Barmer Pflegebericht) found that, due to insufficient staffing levels, care workers had to work more overtime, duty rosters couldn’t be adhered to and care workers were called in when they were on leave (Rothgang, Müller & Preuß, 2020)..

A report by the Bertelsmann Stiftung found that future availability of workforce is likely to differ across the country. In most local authority areas and districts in Eastern Germany an increasing number of people with care needs is unlikely to be met by decreasing number of care workers. Challenges were also identified for Bavaria and Schleswig-Holstein, while parts of Westphalia, Hessen and Baden-Württemberg do not expect to experience the same challenges (Hackmann et al., 2016).

Policies to address these issues

On 2 June 2021 the German government passed a new care reform (Pflegereform 2021) that sets out that all LTC workers in care homes need to pay their staff according to a tariff. It is also planned that care homes will be able to recruit more staff. This should be enabled through national guidelines. The reform also plans to provide LTC workers with more responsibility to make independent decision as part of domiciliary care. These changes are scheduled to come to effect in September 2022 (Bundesministerium für Gesundheit (Bundesministerium für Gesundheit, 2021).

References

European Commission (2021) 2021 Long-term care report – Trends, challenges and opportunities in an ageing society. Country profiles Vol. 2. Available at: Publications catalogue – Employment, Social Affairs & Inclusion – European Commission (europa.eu) (Accessed 4 February 2022).

Lückenbach, C., Klukas, E., Schmidt, P. H. and Gerlinger, T (2021), ‘Governmental response to the COVID-19 pandemic in Long-Term Care residences for older people: preparedness, responses and challenges for the future: Germany’, MC COVID-19 working paper 06/2021. http://dx.doi.org/10.20350/digitalCSIC/13694 Available at: https://drive.google.com/file/d/1-RDnqErydbuGGNXlM8WaFB2oSTRKStTc/view (Accessed 31 January 2022)

Milstein, R., Mueller, M. & Lorenzoni, L. (2021) Case study – Germany. In WHO Centre for Health Development (?Kobe, Japan)?, Organisation for Economic Co-operation and Development, Barber, Sarah L, van Gool, Kees, Wise, Sarah. et al. (?2021)?. Pricing long-term care for older persons. World Health Organization. https://apps.who.int/iris/handle/10665/344505. License: CC BY-NC-SA 3.0 IGO

Rothgang,H. Müller, R. & Preuß, B. (2020) Barmer Pflegereport 2020 – Belastungen der Pflegekräfte und ihre Folgen. BARMER: Berlin. Available at: https://www.barmer.de/blob/283280/6b0313d72f48b2bf136d92113ee56374/data/barmer-pflegereport-2020-band-26-bifg.pdf (Accessed 2 February 2022).

VDEK (2021) Gesetzgebungsverfahren der deutschen Gesundheitspolitik: 2017-2021. Aavailable at: https://www.vdek.com/politik/gesetze/wahlperiode_19.html#ppsg (Accessed 2 February 2022).

Last updated: March 11th, 2022   Contributors: Klara Lorenz-Dant  |  Thomas Fischer  |  Kerstin Hämel  |  

Israel

Israel holds a significantly higher ratio of LTC providers to older population compared to other countries, with 11.1 LTC

Israel holds a significantly higher ratio of LTC providers to the older population compared to other countries, with 11.1 LTC workers available per 100 people aged 65+ (e.g. the UK’s ratio is 3.3 for every 100) (source: OECD).

Israel is listed as a country that subsidizes education to attract people into LTC training, including the provision of scholarships for nurses specializing in geriatric care (source: OECD).

Personal, at-home caregivers make up approximately 90% of the LTC workforce in Israel, with the majority of around-the-clock workers consisting of migrants from Southeast Asia (70,00 migrant care workers are currently hosted by Israel, nearly 40% of whom are from the Philippines) who are contracted out to LTC users through agencies (source: OECDAdva). At-home care workers in Israel are granted certain rights (e.g. a separate and private room in the employer’s (user’s) home, weekly vacation days, and 2-hour rest periods). The hourly wage set for long-term care workers by the National Insurance is the minimum hourly wage; caregivers often hold multiple jobs and live on the poverty line. Those with valid work visas are provided with limited health insurance (source: Attal et al, 2020).

Though standards for medical service delivery are particularly high and demanding, Israel’s required training qualifications for long-term caregivers in the community are amongst the lowest among OECD countries (source: Bank of Israel). Digital aids assist personal care workers in performing tasks such as taking a care recipient’s temperature or blood pressure (source: OECD).

Last updated: January 6th, 2022

Italy

A recent report from Amnesty International (2021) on health and care workers in Italy found that:

  • 85% of care workers are women, 12% are migrant;
  • Wages in LTC services are lower than those of the NHS
  • The care worker/person aged 65+ ratio is among the lowest in the OECD area: 2 care workers per 100 persons 65+ vs 5 care workers per 100 persons 65+

Moreover, as other countries, Italy is experiencing a shortage of nurses: trade unions claim that healthcare and LTC services are lacking 60.000 FTE nurses. The pandemic experience showed that LTC services are seen as a transitory moment of one’s own career, since many professionals apply to move to the NHS at the first opportunity.

The estimated 1 million informal and migrant care workers are important in providing private home care, but it is estimated that only 40% are employed under a regular employment contracts. The trend to rely on home-based migrant carers has been supported by different policy measures (at local, regional and national level), including training and accreditation programmes for informal and migrant carers, regular contracts for the latter have also been promoted by policy makers  (Barbarella et al. 2018).

References:

Amnesty International (2021) Muzzled and unheard in the pandemic: Urgent need to address concerns of care and health care workers in Italy. Retrieved from EUR30/4875/202

Barbarella F, Casanova G, Chiatti C and Lamura G (2018), ‘Italy: emerging policy developments in the long-term care sector’. CEQUA LTC network report. Retrieved from Italy Country Report

Federazione Nazionale Ordini delle Professioni Infermieristiche. (2021) Vaccinazioni, FNOPI: “oltre 60mila infermieri liberi professionisti sono pronti, ma per loro sono indispensabili maggiori tutele”.

Last updated: February 4th, 2022   Contributors: Elisabetta Notarnicola  |  Eleonora Perobelli  |  

Japan

In 2017 there were 5.9 formal LTC workers per 100 older adult population. It is estimated that by 2025 Japan will have a shortage of 380,000 LTC workers.  The country experiences severe and widespread staff shortages and high staff turnover which stem from a number of factors, including: a combination of high requirements for qualifications and low pay compared to other sectors (e.g. retail); low status; very low immigration (Curry et al, 2018; https://ageingasia.org/).

Care workers are required to hold a qualification earned by sitting a formal examination at worker’s own expense. Providers are required to observe strictly-enforced rules around staff to service user ratios (Ikegami, 2007).

Japan has sponsored basic training programmes for both new students and experienced workers willing to return to work after a long break. These initiatives led to an increase in the number of LTC workers of around 20% between 2011 and 2015. The country also provides scholarships for nurses specialising in geriatric care. Japan has workplace counselling services to promote prevention of accidents and burnout (OECD 2020. Who Cares? Attracting and Retaining Care Workers for the Elderly).

References:

Curry, N., Castle-Clarke, S. Hemmings, N. (2018). ‘What can England learn from the long-term care system in Japan?’ Nuffield Trust Research Report. Retrieved from: https://www.nuffieldtrust.org.uk/research/what-can-england-learn-from-the-long-term-care-system-in-japan

Ikegami, N. (2007). ‘Rationale, Design and Sustainability of Long-Term Care Insurance in Japan – In Retrospect’ Social Policy and Society 6(03):423 – 434

Last updated: February 10th, 2022

Luxembourg

In 2018, there were 10.7 FT LTC staff per 100 people aged 65 and over, one of the highest in the EU. Wages in the LTC sector are very attractive, especially for commuters from the neighbouring countries. Provides recruit about 45% of their workforce from outside the country, mostly commuters from France, Belgium, and Germany, even though language barriers can be problematic (source: European Commission: 2021 Long-term care in the EU.

Last updated: February 10th, 2022

Netherlands

The government provides subsidies for people wishing to go into LTC training. Dual career track is available for nurses working in general care and geriatrics. The country has developed stress management/coaching programmes on healthier work environment and prevention of work-place accidents for LTC centres to help decrease absenteeism (OECD, 2020).

References:

OECD (2020) Who carers? Attracting and Retaining Care Workers for the Elderly.

Last updated: February 1st, 2022

Norway

The Norwegian Men in Health Recruitment Programme was set up to recruit (unemployed) men aged 26-55 to the health and care sector. It entails eight weeks of guided training as health recruits in a regional health institution or health care service. The Programme has been very effective in the Norwegian context to motivate employment of men in LTC sector. A new nationwide strategy has been introduced to improve the digital skills of care workers during initial education (source: OECD: Who Cares? Attracting and Retaining Care Workers for the Elderly).

Last updated: February 10th, 2022

Poland

LTC employment is low compared to other EU countries, namely in 2016 there were 0.5 LTC workers per 100 older people (EU-27 average was 3.8). There are inequalities in working conditions and wages between the healthcare and the social sector. The number of carers is increasing, however the country is experiencing ageing of LTC staff will put additional pressure on ensuring adequate staffing levels (source: European Commission: 2021 Long-term care in the EU).

Last updated: February 10th, 2022   Contributors: Joanna Marczak  |  Agnieszka Sowa-Kofta  |  

Republic of Korea

In 2018, there were 3.9 Formal LTC workers per 100 older adult population. Ninety percent of workforce is personal support workforce. LTC facilities in Korea have mandated staff to resident ratios and a national curriculum of minimum requirements for LTC workers has been established whereby care workers must pass certificate tests. Training and career development options are available for care workers in the form of modular training (sources: who-cares-attracting-and-retaining-elderly-care-workers; https://www.oecd-ilibrary.org; COVID_LTC_Report-Final-20-November-2020.pdf).

Last updated: January 6th, 2022

Romania

With 1 LTC worker per 100 older people in 2016, compared to 3.8 for the EU-27 average, Romania is among the countries with the lowest number. This situation is partly attributed to Romanian nationals migrating to work in health and social care sectors in the neighbouring, more affluent EU countries. Romania is among the top 20 countries to provide LTC workforce to OECD countries, e.g. Romanian nurses account for half of all foreign trained nurses in Italy. The COVID-19 pandemic may reverse the trend to some extent, increasing the availability of the LTC workforce, due to higher unemployment in the country (hence more people available to work in LTC sector) as well as returned migration during pandemic (source: European Commission: 2021 Long-term care in the EU).

Last updated: February 10th, 2022

Singapore

The country operates with shortages of workers in LTC sector, which poses challenges to staffing facilities (source: Responding to COVID-19 in Residential Care: The Singapore Experience – Resources to support community and institutional Long-Term Care responses to COVID-19 (ltccovid.org).

Last updated: January 6th, 2022

Slovakia

The number of LTC workers per 100 people aged 65 and over is 1.5 worker, which constitutes less than half the EU-27 average. Care provided by family members is the main form of LTC in Slovakia.  More than 90 % of the total LTC workforce in 2016 were women. The majority of LTC workers have a medium level, non-tertiary education. Non-standard employment is not very widespread e.g. the share of temporary employment is less than 10 %, whilst shift work is less than 40 %, far below the EU-27 average (European Commission, 2021).

References:

European Commission (2021)  2021 Long-Term Care Report Trends, challenges and opportunities in an ageing society. Luxembourg: Publications Office of the European Union

Last updated: February 4th, 2022

South Africa

South Africa has National Norms and Standards (2008) that outline acceptable levels of service to be provided to older people. Recent audits have found many facilities in partial non-compliance. In addition, informal racially discriminatory practices were observed in some facilities, both in terms of admissions and quality of care.

In line with global trends, concerns have been raised about the rapidly increasing aging population in South Africa and the ability of the current healthcare system to keep pace with patient demand, particularly nursing home residents. Evidence suggests that the current workforce in South Africa receive limited training in this area and are largely unprepared to meet the demands of the aging population. Building the capacity and skills of the workforce in South Africa is one approach that could help to improve the early detection of infection and assist the nursing home workforce to provide more effective and timely care, particularly during the current COVID-19 pandemic.

A published paper suggests that decision support tools, such as the Early Detection of Infection Scale, can help ensure consistency and ensure more timely treatment, minimising unplanned admissions and healthcare expenditure. However, the potential benefits or indeed how easily this could be integrated in to nursing homes in South Africa is unknown.

Sources:

https://www.who.int/publications/i/item/9789241513388

Carey, N., Boersema, G. C., & du Toit, H. S. (2021). Improving early detection of infection in nursing home residents in South Africa. International Journal of Africa Nursing Sciences14. https://doi.org/10.1016/j.ijans.2021.100288

Last updated: January 6th, 2022   Contributors: William Byrd  |  

Spain

Low public spending on LTC, is related to low wages in the sector, for example, the monthly cost per LTC employee is 67% of the average wage in Spain. Poor working conditions are the norm in a sector where women are the majority. In care homes, staff ratios vary markedly between regions and are generally inadequate (Zalakain et al. 2020).

A mostly female and migrant workforce

In 2020 there were 684,949 people working in social care (based on data from the EPA survey), representing 3.7% of the total number of employed persons in Spain. 66.3% of social care workers were employed in private households, either as home carers (17.7%) or as domestic workers (82.3%). Carers working in care homes represented 19.9% of the total care workforce (most them  employed as nursing assistants), and carers in social services without accommodation (mostly home help services, usually referred to as SAD) represent 13.9% of the care workforce.

In all occupations women exceed 90% of the workforce, specially among domestic services, where 98.3% are female. Migrant workers represent 62.2% of domestic workers, 49.2% of home carers and 25.6% of nursing assistants (Roca et al., 2021).

Improving the working conditions of female workers is essential to ensure the quality of care. This is no a homogenous sector since it is very different to work in a care home, in a Home Help Service [SAD], or as a home and care worker (Martínez-Buján, 2011; Moré, 2015; Roca, 2017). But there are some common characteristics among care workers since they all share precarious working conditions. They also share that they are feminized and poorly qualified jobs, converted into a labour niche for foreign migrants with little recognition. Domestic workers have the worst working conditions and suffer from an evident lack of rights (Comas-d’Argemir and Martínez-Buján, 2021).

Female care workers face various obstacles to professionalization. One of them is related to the persistence of a family model of care that links care to the home (preference to grow old at home), where an individualizing logic predominates and where the figure of the family caregiver extends into that of the paid caregiver (Moreno-Colom et al., 2016). The other obstacle is that little or no qualifications are required to do this job, based on the naturalisation of expertise considered unique to women, which justifies the low salaries (Recio Cáceres et al., 2015). That weakens the capacity for collective action and increases the insecurity and vulnerability of these workers (Cañada, 2021). Job insecurity is the enemy of quality care. Low wages, part-time work and temporary employment generate a high turnover of female workers, especially the youngest, who can access more qualified qualifications and easily leave the sector searching for better-paid jobs. Or they go to the health sector, where there are better salaries. The lack of specific training to treat certain pathologies also affects the quality of care (Comas-d’Argemir and Martínez-Buján, 2021). The dichotomy is clear: either the costs of care are assumed socially so that it is carried out in decent conditions, or women continue to be exploited, either as unpaid family caregivers or as cheap labour. That is the current model in the Spanish context (Comas-d’Argemir and Martínez-Buján, 2021).

References:

Cañada, Ernest (2021) Cuidadoras. Historias de trabajadoras del hogar, del servicio de atención domiciliaria y de residencias, Barcelona, Icaria.

Comas-d’Argemir, Dolors y Martínez-Buján, Raquel (2021), Hacia un modelo alternativo de cuidados, en Comas-d’Argemir, Dolors y Bofill-Poch, Sílvia (eds.) (2021): El cuidado importa. Impacto de género en las cuidadoras/es de mayores y dependientes en tiempos de la Covid-19, Fondo Supera COVID-19 Santander-CSIC-CRUE Universidades Españolas. www.antropologia.urv.cat/es/investigacion/proyectos/cumade/

Martínez-Buján, Raquel (2011) La reorganización de los cuidados familiares en un contexto de migración internacional, Cuadernos de Relaciones Laborales, 29, 1, 93–123.

Moré, Paloma (2015) Cuidados a personas mayores en Madrid y París: la trastienda de la investigación, Sociología del Trabajo, 84, 85-105.

Moreno-Colom, Sara; Recio Cáceres, Carolina; Borràs Català, Vincent y Torns Martín, Teresa (2016) Significados e imaginarios de los cuidados de larga duración en España. Una aproximación cualitativa desde el discurso de las cuidadoras, Papeles del CEIC, 145, 1-28.

Roca, Mireia (2017): Tensiones y ambivalencias durante el trabajo de cuidados. Estudio de caso de un Servicio de Ayuda a Domicilio en la provincia de Barcelona, Cuadernos de Relaciones Laborales, 35, 2, 371-391.

Roca, Mireia, Bañéz, Tomasa y Hernández, Ana Lucía (2021), Trabajadoras en servicios de cuidado. Servicios sociales básicos, centros de día, asistencia domiciliaria y asistencia personal, en Comas-d’Argemir, Dolors y Bofill-Poch, Sílvia (eds.) (2021): El cuidado importa. Impacto de género en las cuidadoras/es de mayores y dependientes en tiempos de la Covid-19, Fondo Supera COVID-19 Santander-CSIC-CRUE Universidades Españolas.www.antropologia.urv.cat/es/investigacion/proyectos/cumade/

Recio Cáceres, Carolina; Moreno-Colom, Sara; Borràs Català, Vincent y Torns Martín, Teresa (2015) La profesionalización del sector de los cuidados, Zerbitzuan, 60, 179-193.

Zalakain, J. Davey, V. & Suárez-González, A. (2020). ‘The COVID-19 on users of Long-Term Care services in Spain’. LTCcovid, International Long-Term Care Policy Network, CPEC-LSE, 28 May 2020. Retrieved from: LTCcovid-Spain-country-report-28-May-1.pdf

Last updated: March 10th, 2022   Contributors: Joanna Marczak  |  Carlos Chirinos  |  

sub-Saharan Africa

Most family caregivers are left to provide support with little or no guidance on how to address complex issues that sometimes arise. Dementia is a key example: few caregivers understand the nature of the condition, the ways it can influence behaviour and what responses can ease the burden and enhance the lives of care recipients. Unpaid family caregivers also pay a price in terms of foregone education and/or income-earning opportunities. Study findings further highlight adverse effects on caregivers’ physical health, including fewer opportunities for self-care, and their mental health, including depression. Some evidence documents the considerable financial costs of caregiving borne by families, particularly in households with dependent children (source: https://www.who.int/publications/i/item/9789241513388).

Last updated: January 6th, 2022

Sweden

Organisational reforms aiming to contain costs and increase efficiency introduced since the 1980s have involved the introduction of market oriented models that have resulted in worsening working conditions (Szebehely, 2020 and Strandell, 2019). Approximately 25% of LTC workers are employed by the hour and, of those who work in care homes, one in five lack formal training (Szebehely, 2020).

There are roughly 17,000 registered nurses in social care in Sweden, and about 200,000 care workers (assistant nurses/ care aids). Around 60% of this workforce work in care homes; on average, there are 0.4 registered nurses and three care workers for each ten residents (Szebehely, 2020).

A study analysing changes in the job content and working conditions of Swedish home care workers between 2005 and 2015 found that working conditions worsened during that period, with respondents in 2015 reporting higher workloads (both in intensity of tasks and number of clients per day), less support from supervisors, less interactions with colleagues and less scope to plan their daily work. They also reported being more mentally exhausted (Strandell, 2019).

References

Strandell R. (2019) Care workers under pressure – A comparison of the work situation in Swedish home care 2005 and 2015. Health and Social Care in the Community 28(1): 137-147. https://doi.org/10.1111/hsc.12848

Szebehely M (2020) The impact of COVID-19 on long-term care in Sweden. LTCcovid.org, Long-Term Care Policy Network, CPEC-LSE, 22 July 2020.

 

 

Last updated: February 13th, 2022

Thailand

In general, care for older persons in Thailand is provided by informal caregivers. After informal caregivers, volunteers are the next most important group providing LTC, Volunteers are usually officially trained in the basics of caring for older persons. Although they work without pay, those who volunteer for government projects receive transport allowances. The roughly 1 million village health volunteers (VHVs) in
Thailand play an important role in the country’s care system, but they do not have any specific responsibility or training for LTC.

The two main government programs that utilize volunteer caregivers are: 1) the Home Care Volunteers for the Elderly (HCVE); 2) the Community-Based Long-Term Care Program, under the National Health Security Office (NHSO), which uses volunteer caregivers in
about 75% of the participating districts and paid caregivers in the other 25%. The HCVE volunteers are trained for 3 days, for a total of 18 hours, in basic personal care of older persons, the role of the volunteer, welfare and social services for older persons, and health promotion for older persons. The caregivers involved in the Community- Based Long-Term Care Program receive 70 hours of training whether they are
volunteers or paid caregivers.

Professional care personnel  encompasses professionals who work in the health and social professions, including doctors, nurses,  physiotherapists, occupational therapists, and other health personnel who receive payment for the provision of care services.

Nonprofessional care personnel encompasses people who actually provide private care for older persons, especially at home and in the community. They do not necessarily have formal training, but use past experience in caring for their own family members or their own knowledge and skills to provide care for others. This group includes care assistants, trained paid caregivers, untrained paid care givers, domestic workers (source: Country Diagnostic Study on Long-Term Care in Thailand (adb.org).

Last updated: January 6th, 2022

Turkey

When LTC is provided formally within care settings, women remain the primary providers. With low female labour participation rates, LTC is seen as a potentially suitable sector to enhance women’s training and employability. Recent evidence highlights the role of informally employed domestic and migrant live-in care workers to provide LTC at home when the family cannot meet such needs, funded either through cash-for care schemes or out-of-pocket by the private households (source: https://www.mdpi.com/2071-1050/13/11/6306/htm).

Last updated: January 6th, 2022

England (UK)

Overview

Currently, there is no national workforce strategy for the adult social care workforce – the last strategy was published by government over a decade ago in 2009. Proposals on workforce reforms are expected to be outlined in two forthcoming white papers, on adult social care reform and health and social care integration, respectively (Source: Build Back Better: Our Plan for Health and Social Care).

Social care vacancies

On average in 2020/21, 6.8% of posts were vacant in the English social care sector, equivalent to 105,000 at any one time (Skill for Care, 2021). Overall, data indicate that the staff vacancy rate in social care in  2020/21 was much higher compared to 2014/15 and that pay could be a factor, as although pay has increased in the same period of time, the increase has not kept pace with other sectors (Bottery et al., 2022).

Working conditions and pay

Data indicate that the sector suffers from high staff turnover, poor working terms and conditions, and 24% of the workforce are on zero-hours contracts. Pay levels are low compared to other competing sectors such as retail and hospitality. The national minimum wage has increased in recent years and is set to rise to £9.50 per hour as of April 2022. While this is positive for entry-level staff, there has been no parallel action to boost the pay of more experienced staff with 5 or more years of experience. As a result, the pay differential between junior and more senior care workers has narrowed to an average of 6 pence per hour by March 2021. There are few opportunities for training and progression, with data on qualification levels indicating only 45% of direct care-providing staff in 2020/21 held a relevant adult social care qualification (Bottery et al., 2022).

The adult social care workforce is reliant on migrant labour. It was reported that in total, an estimated 98,710 migrant workers joined the formal care workforce between 2009 and 2019, with 9% from EU and 11% from non-EU countries (Dayan et al., 2019).  In London, more than two in five care workers are from abroad. However, under the new points-based immigration system introduced on 1st January 2021, care workers have not been recognised as eligible for the ‘skilled worker’ route (Source: UK points-based immigration system: further details statement). As a result, the number of new entrants to the social care sector from abroad fell from 5% in 2019 to fewer than 2% in the spring of 2021 (Skills for Care, 2021). To release the recruitment pressures, in December 2021, the government  announced that care workers, care assistants and home care workers will be added to the Shortage Occupation List as part of the health and care visa to make it quicker, cheaper and easier for social care employers to recruit eligible workers to fill employment gaps (see section 3.06 of this report for more details).

References: 

Bottery, S., Ward, D. (2022). Social Care 360. The King’s Fund. https://www.kingsfund.org.uk/publications/social-care-360

Dayan, M., Palmer, B. (2019). Stopping the staff we need? Migration choices in the 2019 general election. Nuffield Trust Election briefing

Skills for Care (2021). The state of the adult social care sector and workforce in England 2021.

Last updated: March 8th, 2022   Contributors: Joanna Marczak  |  Nina Hemmings  |  Chris Hatton  |  

Scotland (UK)

The Scottish Social Service Council (SSSC) has a statutory duty to keep a register of workers in social services including care homes, care at home and housing support services. It is possible for an individual to appear in more than one category covered in the SSSC register but the most recent data suggests there were 36,661 non-managerial registrants working in care homes, 58,016 non-managerial registrants working in the care at home sector, and 49,295 non-managerial registrants working in the housing support sector.

Last updated: March 10th, 2022   Contributors: Jenni Burton  |  David Bell  |  Elizabeth Lemmon  |  David Henderson  |  

United States

According to data published by the US Department of Health and Human Services, in 2015-2016 there were almost 1.5 million nursing employee full-time equivalents (FTEs) working across the five sectors of long-term care in the United States. This includes registered nurses (RNs), licensed practical or vocational nurses (LPNs or LVNs), and healthcare aides, as well as approximately 35,000 social work FTEs. The majority (63.3%, or 945,700 FTEs) work in nursing homes, 20.0% are residential care community employees, 9.7% are employed by home health agencies, 5.7% are employed by hospices, and 1.3% are adult day services centre employees. Employment conditions and required qualifications vary a great deal across the sectors; a breakdown of employment rates in each sector can be found beginning on page 18 of the CDC report.

Nursing home workforce

The nursing home workforce is composed of nursing assistants, licensed practical/vocational nurses, and registered nurses. Nursing assistants provide hands-on care with daily activities such as eating, toileting, dressing, and toileting. Licensed practical or vocational nurses administer medications or wound treatments while registered nurses oversee the overall nursing care of nursing home residents.

According to a report, 9 out of 10 nursing assistants who work in nursing homes are women. One in three has a child under the age of 18  at home and about 15% have a child under the age of five. Less than half of nursing assistants have completed education beyond high school. Approximately 54% of all nursing assistants in nursing homes are people of color, 36% of which are Black of African American. Additionally, 20% of nursing assistants are immigrants.

Last updated: February 11th, 2022   Contributors: William Byrd  |  Nerina Girasol  |  

Vietnam

Vietnam faces a shortage of qualified nursing care staff for the elderly population. Most are cared for by family or domestic workers, who usually have no training in care or medical expertise (source: Vietnam Investment Review). They also do not normally receive any financial support from the government for their informal caring duties (source: UNDP report).

Staff in formal nursing homes do not have to be formally trained. Their salaries are low due to limited funding, which results in difficulty with recruitment and difficulty reaching staffing quota levels (source: UNDP report). Staffing levels in social protection facilities are mandated by The Ministry of Labour, Invalids and Social Affairs. The ratio of care staff to recipients is 1:8-10 for low-level care needs and 1:3-4 for higher level care. The ratio for nutrition staff (preparers and purchasers of food) is 1:20 (source: Royal Commission into Aged Care Quality and Safety).

Last updated: January 6th, 2022   Contributors: Daisy Pharoah  |  

1.11. Role of unpaid carers and policies to support them

Overview

Introduction

Informal and unpaid care has attracted significant policy attention worldwide, partly driven by a recognition that unpaid carers play a critical role in ensuring the sustainability of the long-term care system.  For example, carers provide  as much as 80% of all care across the European Union (Eurocarers, 2017), although there are differences within Europe, where countries such as Denmark the Netherlands and Sweden have higher reliance on formal care, while countries such as Greece, Bulgaria, Cyprus, Estonia, Portugal, Latvia, Romania and Croatia rely almost exclusively on unpaid care (The 2021 Ageing Report). Unpaid carers also provide a lion’s share of care in Sub-Saharan Africa, US, or Israel (see country reports in this section).

Policies to support unpaid carers

Policy measures that aim to support unpaid carers can be divided into those directly addressed to carers and those addressed at people with needs which nonetheless can support carers (e.g. homecare). Policies directly aimed at supporting carers include compensation measures such as carers’ allowance, social security transfers, tax reliefs, and these tend to be implemented in many countries (e.g. in England, Austria, Italy, Sweden, Poland). Supportive measures such as training, support groups, carers’ assessment, respite care, are also common although in some countries (e.g. Austria, England, Finland, France, Germany, and Sweden) these are more prevalent that in others (e.g. Bulgaria, Latvia, Poland, Italy or Spain). Reconciliation measures aiming at facilitating work with care (e.g. paid or unpaid leaves that unpaid carers can take are less popular although also present in some countries (e.g. Austria, Germany, Italy).

Research evidence on the impact of caring

Evidence indicates that caring has a negative  impact on psychological health, such as depression, anxiety,  stress and burden (Gilhooly et al., 2016). There is also some evidence on the impact of caring on physical health. Intensity of caring as well as duration of care provision is significantly associated with poorer health (Bauer and Sousa-Poza, 2015; Brimblecombe et al., 2018).

Research evidence on the effectiveness of policy interventions to support carers

Reviews indicate  positive effects of various educational, psychosocial interventions and support groups on carers’ outcomes.  For example Thomas et al. (2017) meta-review found education, training and information for carers were highly effective in supporting unpaid carers.

The evidence on the impact of respite care on carers’ outcomes is mixed: some evidence suggests that although caregivers may be  satisfied with respite care, they experienced small or none improvements in burden, physical or mental health (Lopez-Hartmann et al., 2012; Maayan et al., 2014; Mason et al., 2007; Shaw et al., 2009).

Reviews also indicate that supporting unpaid carers through e.g. counselling, educational strategies, education and training, can delay institutionalisation of older people with needs e.g. those with dementia or Alzheimer’s disease (Gilhooly et al., 2016; Thinnes and Padilla, 2011; Mittelman et al., 2006).

Research highlights that it may be that a combination of various interventions that are most effective and that the type of support needed will depend on the carer’s (and the care recipient) broader circumstances (Dickinson et al., 2017; Gilhooly et al., 2016;  Thomas et al., 2017; Vandepitte et al., 2016)

References:

Brimblecombe, N., Fernandez, J., Knapp, M., Rehill, A., & Wittenberg, R. (2018). Review of the international evidence on support for unpaid carers. Journal of Long-term Care, 25-40 (ilpnetwork.org)

Dickinson, C., Dow, J., Gibson, G., Hayes, L., Robalino, S., & Robinson, L. (2017). Psychosocial intervention for carers of people with dementia: What components are most effective and when? A systematic review of systematic reviews. Int Psychogeriatr, 29(1), 31-43. doi:10.1017/S1041610216001447

Eurocarers. (2017). Overview of carers’ needs and existing support measure across Europe: Eurocarers

Gilhooly, K., Gilhooly, M., Sullivan, M., McIntyre, A., Wilson, L., Harding, E., Crutch, S. (2016). A meta-review of stress, coping and interventions in dementia and dementia caregiving  BMC geriatrics, 16(1), 106.

Lopez-Hartmann, M., Wens, J., Verhoeven, V., & Remmen, R. (2012). The effect of caregiver support interventions for informal caregivers of community-dwelling frail elderly: a systematic review. Int J Integr Care, 12(5), 133. doi: 10.5334/ijic.845.

Mason, A., Weatherly, H., Spilsbury, K., Golder, S., Arksey, H., Adamson, J., & Drummond, M. (2007). The effectiveness and cost-effectiveness of respite for caregivers of frail older people. Journal of the American Geriatrics Society, 55(2), 290-299. doi: 10.1111/j.1532-5415.2006.01037.x.

Thinnes, A., & Padilla, R. (2011). Effect of educational and supportive strategies on the ability of caregivers of people with dementia to maintain participation in that role. American Journal of Occupational Therapy, 65(5), 541-549. doi: 10.5014/ajot.2011.002634.

Vandepitte, S., Van Den Noortgate, N., Putman, K., Verhaeghe, S., Faes, K., & Annemans, L. (2016). Effectiveness of supporting informal caregivers of people with dementia: a systematic review of randomized and non-randomized controlled trials. Journal of Alzheimer’s Disease, 52(3), 929-965. doi: 10.3233/JAD-151011.

 

 

International reports and sources

2021 EU Long-term care report. Trends, challenges and opportunities in an ageing society, Volume 2. Provides an overview of the situation of unpaid carers in a number of European Countries

Eurocarers website provide information, facts and publications about unpaid carers in European countries.

The CEQUA project provides an overview of policies on unpaid carers in 11 European countries including England, France, Germany, Spain, Sweden, Finland, Austria, Poland, Latvia, Bulgaria, Czech Republic and Italy  (https://www.cequa.org/).

For Sub-Saharan Africa, see WHO series on long-term care on healthy ageing. 

Australia

Informal carers play an important role in Australian society.  In 2018, around one in nine Australians provided unpaid care to an elderly person or somebody with disability  (Australian Bureau of Statistics, 2019).

References: 

Australian Bureau of Statistics (2019). Disability, ageing and carers Australia: Summary of findings, Australian Bureau of Statistics: Canberra, ACT, Australia

Last updated: March 4th, 2022

Austria

Unpaid carers have been receiving  greater recognition and benefits in Austria over the years. For example, since  2009, the federal Government pays old-age for informal carers themselves (prior to 2009, unpaid carers had an option to pay  health and pension insurance voluntarily from their own pockets).
Carers are also entitled to an extra allowance to pay for respite care. Since 2014, carers who are in paid employment may take a paid care leave or part-time care leave to care for dependent relatives for up to three months, the compensation amount is income-related (Rodrigues et al. 2017).

References: 

Rodrigues, R., Bauer, G., Leichsenring, K. (2017). ‘A decade of piecemeal changes in Austria’. CEQUA LTC Network report 

Last updated: February 15th, 2022

Belgium

Unpaid carers including family members provide an important share of Long-Term Care in Belgium (EC, 2021). 

References:

European Commission, EC (2021) 2021 Long-term care report. Trends, challenges and opportunities in an ageing society. Country profiles Vol. 2. Joint Report prepared by the Social Protection Committee (SPC) and the European Commission (DG EMPL)

Last updated: February 16th, 2022

Bulgaria

Care for older and disabled people has historically been the responsibility of family members in Bulgaria, although there is little information on actual numbers. Informal carers are supported by a range of measures which include leaves of absence from work to care for a dependent person. Carers are entitled to a paid leave of up to ten days per calendar year to providing care to a sick, adult, family member  which may include accompanying them for medical procedures. Unpaid leave may also be requested for longer periods, however whether its granted is subject to employer’s approval (Salchev, 2017).

Since 2019, informal carers may be also selected by the person with needs to act as personal assistants,  by approval from  the municipality, assistants can receive training by the municipalities. In line with the Social Services Act (SSA) informal family members who provide informal care for people with permanent disabilities may  receive free support and training services.  The SSA also established the right to respite care for informal carers (EC, 2021).

References: 

European Commission, EC (2021) 2021 Long-term care report. Trends, challenges and opportunities in an ageing society. Country profiles Vol. 2. Joint Report prepared by the Social Protection Committee (SPC) and the European Commission (DG EMPL)

Salchev, P. (2017). Bulgaria: Emerging policy developments in long-term care. CEQUA LTC Network 

Last updated: February 16th, 2022

British Columbia (Canada)

Unpaid carers in Canada are represented by the Family Caregivers of British Columbia (FCBC), a provincial non-profit. FCBC represents over 1 million people in British Columbia. Although there is no data yet on how many family caregivers are present in the province, FCBC provides access to information and education and acts as a voice for caregivers when liaising with the health and social sector (source: https://www.familycaregiversbc.ca/).

Last updated: March 3rd, 2022

Czech Republic

Unpaid carers represented 4.6 % of the population in 2020: 6.2 % among women and 2.9 % among men. One third of unpaid carers provide care for more than 20 hours per week. Around two-thirds of unpaid carers in social services are female aged between 35-65 years old (EC, 2021). Unpaid care plays an important role in the sustainability of LTC as other options are often not available. There is a growing emphasis to support carers, particularly through improving the availability of respite services and counselling although availability of support is very limited. A care allowance for dependent people who receive unpaid care is also aimed at supporting unpaid carers (Sowa-Kofta et al., 2017; EC, 2021).

References:

European Commission, EC (2021) 2021 Long-term care report. Trends, challenges and opportunities in an ageing society. Country profiles Vol. 2. Joint Report prepared by the Social Protection Committee (SPC) and the European Commission (DG EMPL)

Sowa-Kofta, A., Wija, P. (2017). Czech Republic: Emerging policy developments in long-term care. CEQUA country report.

Last updated: February 16th, 2022

Denmark

It has been estimated that 16% of the total population provided unpaid care at least once a week in 2016. Family members may apply to the municipality to be formally recognised as informal carers. If they are found to be eligible, the carer is employed by the municipality, up to six months with a pre-specified salary based on the national yearly income. Additional services for caregivers include training and education, often focused on improving knowledge and ability to provide support and on improving coping skills (WHO, 2019).

References: 

WHO (2019), ‘Denmark: Country case study on the integrated delivery of long-term care’. Accessed at: https://www.euro.who.int/2019/denmark-country-case-study-on-the-integrated-delivery-of-long-term-care-2019).

Last updated: February 16th, 2022

Finland

Although Finland assigns its municipalities a legal responsibility to provide care services, unpaid carers still play a major role in care provision. It is argued that reforms of the care system in the past 30 years have resulted in increased reliance on families, who have been provided with support through cash-for care schemes  Municipal support requires a contract between the municipality and the caregiver (Ylinen et al., 2021).

References:

Ylinen, T., Ylinen, V., Kalliomaa-Puha, L. Ylinen, S. (2021), ‘Governmental response to the COVID-19 pandemic in Long-Term Care residences for older people: preparedness, responses and challenges for the future: Finland’, MC COVID-19 working paper 04/2021. http://dx.doi.org/10.20350/digitalCSIC/13692

Last updated: February 15th, 2022

France

France is a country with a strong family tradition, where unpaid informal carers have always played an essential role. There were 4.8 million carers recorded in France in 2011. Support for carers is delivered in-kind rather than in-cash. Some of the benefits for carers include the ability to take unpaid leave from employment and paid ‘solidarity’ leave for 3 months with an additional maximum 3 months which must be justified by medical certificate. Although researchers suggested that there is low take up and awareness of these schemes. Other services to support carers include respite care and training (Le Bihan et al. 2017).

References: 

Le Bihan, B., Sopadzhiyan, A. (2017). France Country report. CEQUA LTC Network 

Last updated: February 15th, 2022

Germany

In 2019, there were about 4.13 million people with long-term care needs and around 80% of them received care and support at home (80%). Of those, more than 60% were supported by informal carers only, almost 30% use care and support from both unpaid and domiciliary carers or domiciliary carers only  (source: https://www.destatis.de/DE). the German LTC system provides  cash benefits that could be used as payment for informal care arrangements and financial support for unpaid carers through household transfers for beneficiaries remains strong in the German LTC system. Family carers in paid employment are entitled to financial support if they reduce working hours to care for a close family relation: wage compensation can be granted by employers for reduced employment of a minimum of 15 hours for up to 24 months. Moreover,  the Care Leave Act of 2015 introduced a wage compensation for acute care leave of up to ten days, usually 90% of net earnings; a leave of up to three months is also available for those individuals who support family members at the end of life (Frisina-Doetter et al. 2017).

References: 

Frisina-Doetter, L., Rothgang, H. (2017). The German LTC policy landscape. CEQUA LTC Network report 

Last updated: February 15th, 2022

Ireland

Most long-term care in Ireland is provided by unpaid carers supplemented by home care services (Pierce, et al. 2020). Income support is often targeted at carers (rather than people with LTC needs), in the form of carer’s allowance/benefit. In order to qualify for carers’ allowance one needs to be in a position to provide full-time care to a person with needs.  Ireland also has a home carer’s tax credit for married couples or civil partners where one partner carers for a dependent person (rather than being in paid employment). The Carer’s Leave Act 2001 entitles employees to leave work temporarily to provide full-time care for someone who requires full-time care (as signed off by a GP).  To be eligible, the carer must have been in the continuous employment for at least 12 months. The leave can be taken for a period ranging from 13 weeks up to a maximum of 104 weeks. The leave can be taken either as a continuous period or for a number of separate periods not exceeding the maximum number of 104 weeks. The leave is unpaid, however it offers job protection and the person may be eligible for carer’s benefits (EC, 2021).

References: 

European Commission, EC (2021) 2021 Long-term care report. Trends, challenges and opportunities in an ageing society. Country profiles Vol. 2. Joint Report prepared by the Social Protection Committee (SPC) and the European Commission (DG EMPL)

Pierce M, Keogh F and O’Shea E (2020). ‘The impact of COVID-19 on people who use and provide long-term care in Ireland and mitigating measures’. Country report available at LTCcovid.org, International Long-Term Care Policy Network, CPEC-LSE, 13 May 2020.

Last updated: February 16th, 2022

Israel

Israel heavily relies on unpaid carers: an estimated million and a half Israelis, mostly women,  serve as primary caregivers and typically provide 21 hours of caregiving a week (Nissim et al. 2016).  In April 2018, as part of the LTC reform, the National Insurance Institute launched a program to entitle home-based unpaid caregivers to long-term care benefits. Made a national policy in August 2019, family members can be paid as caregivers under certain conditions; statistics on the implementation of the policy are unavailable (source: https://adva.org/wp-content/uploads/2019/03/Care-Deficit-EN.pdf).

References: 

Nissim, B. D. et al. (2016). A Method for Estimating the Participation Rate of Elder Care. Theoretical Economics Letters. 6 (3). Retrieved from: A Method for Estimating the Participation Rate of Elder Care

Last updated: February 15th, 2022

Italy

Italy has a strong family-based approach to LTC and unpaid carers represent the bulk of  provision. No precise figures are available, however, the number of family carers among the population in working age (15–64) who care for an adult, has been estimated at over 3.3 million. Carers have access to a number of provisions, including: help in performing care tasks (e.g. training); provision for carers but also for people with needs (e.g. respite care); ‘indirect specific’ services which aim to improve conditions for unpaid carers (e.g. measures to help carers combine caring with paid work); ‘indirect non-specific’ provisions:  directed at care
recipients however carers may also benefit from them. Migrant domestic carers constitute an important part of care provision in the country (Barbabella et al. 2017).

References:

Barbabella, F., Casanova, G., Chiatti, C., Lamura, G. (2017). ‘Italy: emerging policy developments in the long-term care sector’ CEQUA Report 

Last updated: February 15th, 2022

Japan

The extent to which the system relies on unpaid care is unclear. The recent reforms were successful in largely shifting the responsibility of caring from families to the state by offering in-kind benefits to those in need. However, there are no cash benefits for people with needs, hence there is no option to use cash benefits to pay for care to relatives or friends. Although in-kind benefits are generous, but may not cover all needs. Moreover, there is also a 10% co-payment on accessing care, therefore poorer people may need to avoid using formal care and rely on unpaid carers instead (Curry et al. 2018).

References: 

Curry, N., Castle-Clarke, S. Hemmings, N. (2018). ‘What can England learn from the long-term care system in Japan?’ Nuffield Trust Research Report. Retrieved from: https://www.nuffieldtrust.org.uk/research/what-can-england-learn-from-the-long-term-care-system-in-japan

Last updated: February 15th, 2022

Latvia

Informal care is common in Latvia. Some services for people with LTC needs, which may also benefit carers, are provided by municipalities (e.g. homecare, meals on wheals etc). The Law on Social Services and Assistance indicates that local government has to offer counselling, psychological support as well as training to family caregivers, in some circumstances they may also provide material support  (EC, 2021s). Overall however, services for informal carers have been historically scarce and underdeveloped (Calite-Bordane, 2017).

References:

Calite-Bordane, D. (2017). ‘Latvia: Emerging policy developments in long-term care’. Retrieved from: CEQUA Latvia Country report

European Commission, EC (2021) 2021 Long-term care report. Trends, challenges and opportunities in an ageing society. Country profiles Vol. 2. Joint Report prepared by the Social Protection Committee (SPC) and the European Commission (DG EMPL)

Last updated: February 16th, 2022

Poland

Prevalence and characteristics of unpaid carers

Families are primarily responsible for care provision in Poland, and it is estimated that between 80% to over 95% of LTC is provided by unpaid carers. Typically, carers are women, who tend to be older themselves, often resigning from work and taking early retirement to provide care.

Cash benefits

Informal carers are mostly supported through cash benefits provided either to the carer or to the person with care needs, and benefits tend to be low. Most cash benefits cannot be combined with care, and overall there is little support to allow carers combine paid work with caring (Golinowska et al. 2017).

In-kind services

Such services as respite care, trainings and psychological help as scarce, and if they exist they tend to be provided by charities. A programme to introduce and develop respite care was launched in Poland in 2019 (EC, 2021).

References: 

European Commission, EC (2021) 2021 Long-term care report. Trends, challenges and opportunities in an ageing society. Country profiles Vol. 2. Joint Report prepared by the Social Protection Committee (SPC) and the European Commission (DG EMPL)

Golinowska, S., Sowa-Kofta, A. (2017). The Polish policy landscape. CEQUA Report 

Last updated: February 16th, 2022   Contributors: Joanna Marczak  |  

Spain

In Spain, the family continues to be an essential resource in care provision. Despite numerous public and private care resources that make up a complex care system, the family continues to be assigned by society the task of caring for its members. Virtually no family caregivers carry out care activities entirely alone (Soronellas & Jabbaz, 2021). Family care is carried out progressively, fitting together different resources provided by the care diamond agents: family, state, market, and community (Razavi, 2007). We will refer to this with the expression: mosaic of care resources, that is, the set of aids and services that are used to care for people in long-term care situations (Soronellas and Comas-d’Argemir, 2017). In Spain, the weakness of public policies and the lack of incorporation of men, fragments care among the different provider agents, overloads women and makes it difficult for families to manage care for people with care needs.

In the analysis of the mosaic of care, we must consider the factors that condition access to formal care resources that we will mention: (1) Having a certain degree of dependency. (2) Have the economic capacity to finance the private outsourcing of care. (3) Living in an urban area with a great diversity of institutional resources or low public and private resources in a rural area. (4) Be willing to accept the possibility of sharing care (Soronellas & Jabbaz, 2021).

Prevalence

The Spanish LTC system is family-based often relying on women.  In 2016, 13.3 % of women and  9.5 % of men provided unpaid care. Moreover, over 50% of informal carers provided more than 20 hours of care weekly (EC, 2021).

Impact of caring

A recent paper shows that informal carers experience significant problems due to their caring responsibilities, although the impact is greater on women than men.  It has been estimated that informal care duties pose significant obstacles for female carers’ participation in the paid workforce, as well as reporting less time for social activities and to care for themselves. Both men and female carers’ face financial difficulties due to their caring (Peña-Longobardo, et al. 2021).

To facilitate taking care of disabled people or people with care needs, many women abandon their careers. They consequently not only lose the opportunity to develop as a person, but  also as a worker who contributes to the labour market. They also lose the right to accrue possible benefits from the Social Security System, as it would be impossible to comply with the requirements of the system’s contributory benefits.

Measures to support unpaid carers

The Dependency Law, via a series of measures designed for non-professional caregivers (who are largely women), includes a measure that allows them to accrue social security benefits while caring for family members. This is financed by the Spanish General State Administration (AGE) and requires that non-professional caregivers of people with care needs sign an agreement to prevent them incurring any economic cost. Essentially, this allows non-professional carers to accrue benefits for retirement and if they find themselves suffering from permanent disability.

As of 31st January 2022, there are a total of 67,249 special agreements signed by non-professional caregivers (88.6% of which are women). The payment of the special agreements for non-professional carers by the AGE has meant a total expense of €1,639,881,600.61 since the Dependency Law came into force (although it must be taken into consideration that this measure was on hold between 2012 and April 2019).

Overall, services for informal carers are considered to be scarce and vary between the autonomous communities (EC, 2021). The law however promotes support for unpaid carers, such as training programmes, information and respite care. Carers may also pay social security on a voluntary basis (Guillen et al. 2017).

 

References:

European Commission, EC (2021) 2021 Long-term care report. Trends, challenges and opportunities in an ageing society. Country profiles Vol. 2. Joint Report prepared by the Social Protection Committee (SPC) and the European Commission (DG EMPL)

Peña-Longobardo, L.M.; Río-Lozano, M.D.; Oliva-Moreno, J.; Larrañaga-Padilla, I.; García- Calvente, M. (2021). Health, Work, and Social Problems in Spanish Informal Caregivers: Does Gender Matter? Int. J. Environ. Res. Public Health 2021, 18,7332. https://doi.org/10.3390/ijerph18147332

Guillen, M. et al. (2017). Spain. Country Report. CEQUA LTC Network 

Razavi, Shahra (2007): The political and social economy of care in a development context. Conceptual issues, research questions and policy options, United Nations Institute for Social Development, Enlace.

Soronellas, Montserrat y Jabbaz, Marcela (2021), Cuidadoras familiares, antes y depues de la pandemia, en Comas-d’Argemir, Dolors y Bofill-Poch, Sílvia (eds.) (2021): El cuidado importa. Impacto de género en las cuidadoras/es de mayores y dependientes en tiempos de la Covid-19, Fondo Supera COVID-19 Santander-CSIC-CRUE Universidades Españolas. www.antropologia.urv.cat/es/investigacion/proyectos/cumade/

Soronellas, Montserrat y Comas-d’Argemir, Dolors (2017): Hombres cuidadores de personas adultas dependientes. ¿Estrategias ante la crisis o nuevos agentes de cuidado?, en María Rosa Herrera y German Jaraiz (eds.), Pactar el Futuro. Debates para un nuevo consenso en torno al bienestar, Sevilla, Universidad Pablo de Olavide, 2221-2239.

Last updated: June 27th, 2022   Contributors: Joanna Marczak  |  Carlos Chirinos  |  Sara Ulla Díez  |  

sub-Saharan Africa

Families provide most of care in sub-Saharan Africa, often without any  support. Particularly women are often expected to forego education or employment to provide care for older people (source: WHO series on long-term care on healthy ageing).

Last updated: February 17th, 2022

Sweden

Although the general principle behind LTC policy in Sweden is to provide government-financed care, unpaid caregivers provide around two-thirds of the care received by those living in the community. Unpaid carers can claim time off work and compensation from national social insurance. Carers may receive cash benefits from municipalities, which are provided at the discretion of the municipality, or carers’ allowance, whereby a family carer is employed by the municipality to provide care (notably, this is not payable to those over 65 years old). Direct in-kind support for carers is provided by all municipalities as a general service and not based on needs assessment, it can be in the form of information and advice, counselling, support groups, respite care. The intensity, content and quality of the provided support can, however, vary between the municipalities (Johansson et al. 2017).

References: 

Johansson, L. and Schön, P. (2017). Sweden: Country Report. CEQUA: LTC Network. Retrieved from: Sweden Country Report

Last updated: February 15th, 2022

England (UK)

Prevalence

It has been estimated that around 5 million carers provide informal support to older people in England (Brimblecombe et al., 2016, Wittenberg, 2017). Considering the population ageing and increasing numbers of people with LTC needs, it has been projected that by 2035 the country will need additional 2.3 million of unpaid carers (Brimblecombe et al., 2016).

Policies to support unpaid carers

A number of policy changes have been introduced over the last decade that aim to support carers, and which focus on supporting carers directly (e.g. recognition of carers assessment, cash for carers, pension rules) as well as supporting people with needs, and thus carers indirectly. Perhaps the most important law for the last sixty years reforming the social care system, including carers’ related policies, was The Care Act 2014.  The statute  enhanced recognition of legal status of carers, it provided carers with new rights to receive needs assessment regardless of the eligibility to public support by the person they care for, and regardless of the intensity of the care provided. It also  clarified their entitlements to public support. The Care Act highlighted that  local authorities must promote carers’ wellbeing , they must provide information and advice to carers as well as support carers if they want to remain in employment (Marczak et al. 2017; Marczak et al. 2021).

Services for carers

The Care Act 2014,  specified that English local authorities have a legal duty to provide support to meet carers’ eligible needs (HM Government, 2014). Indeed, a recent King’s Fund report illustrated that more carers have received support in 2020/21 relative to 2015/16, although most carers receive information, advice or such universal services as signposting, conversely in the same period fewer carers received paid support such as personal budgets.

Cash benefits

Unpaid carers in England are eligible to claim cash benefits such as Carers Allowance, which is  not means-tested, eligibility depends on various criteria, including a that the carer provides at least 35 hours of care per week. As of February 2022, the allowance was £67.60 weekly.  Informal carers in receipt of Carer’s Allowance automatically get National Insurance credits which can help them to build towards their state pension (source: Carer’s Allowance – GOV.UK).

References: 

Brimblecombe, N. Fernandez, JL, Knapp, M., Rehill A. Wittenberg, R. (2016) Unpaid Care in England: Future Patterns and Potential Support Strategies. PSSRU Discussion Paper. London: EShCRU at LSE.

Marczak, J. Fernandez, JL, Wittenberg, R. (2017). The English policy landscape. CEQUA LTC Network

Marczak, J. Fernandez. JL, Manthorpe, J. Brimblecombe, N. Moriarty, J.  Knapp,M, Snell, T. (2021) How have the Care Act 2014 ambitions to support carers translated into local practice? Findings from a process evaluation study of local stakeholders’ perceptions of Care Act implementation. Health and Social Care in the Community https://doi.org/10.1111/hsc.13599 

Wittenberg, R. (2017) Long-term care for older people in England. In: MASIERO, S. & CARRARO, U. (eds.) Rehabilitation Medicine for Elderly Patients | SpringerLink

Last updated: March 3rd, 2022   Contributors: Joanna Marczak  |  

United States

The US system relies heavily on informal (unpaid) caregivers: 75% of those needing LTC rely solely on informal caregivers and approximately 41 million Americans are unpaid caregivers (Upadhyay and Weiner, 2019). These demands are also disproportionately experienced by women, individuals of low socioeconomic status, and minority racial and ethnic populations. Over the past 10 years some States used provisions in the Affordable Care Act to redistribute some Medicaid funds towards at-home, informal caregiving, nationally this shift has been small (van Houtven et al. 2020).

References:

Upadhyay P. and Weiner J. (2019) Long-Term Care financing in the United States. Leonard Davis Institute of Health Economics, Issue Brief 23(1). University of Pennsylvania.

Van Houtven, CH., Boucher NA, Dawson, WD. (2020). The Impact of COVID-19 Outbreak on Long Term Care in the United States. Country report in LTCcovid.org, International Long-Term Care Policy Network, CPEC-LSE, 24th April 2020. Retrieved from: Article from ltccovid.org

 

Last updated: February 16th, 2022

1.12. Personalisation, user voice, choice and satisfaction

Overview

The COVID-19 pandemic has highlighted that most countries have weak mechanisms to ensure that people who use long-term care services have a say on decisions that affect their life, and to guarantee their rights.

The UN Convention on the Rights of Persons with Disabilities states that people have a right to family and relationships.

There are important differences between countries in the extent to which people can choose the type of care and support they use, how and by whom it is delivered.

Australia

My Aged Care is the single point of entry for government subsidised care in Australia, operating through a phone line and website. It provides information about the different types of care available, an assessment of needs, provides referrals and support to find service providers and information on the fees people are likely to face.

People who use aged care may choose between different types of aged care services, including care within their own home, community, or in residential aged care settings. Home Care Packages allow people to choose the care bundle that they require, along with their preferred providers and services.

The Royal Commission report found that users of aged-care found the experience of seeking services to be “time-consuming, overwhelming, frightening and intimidating” (Royal Commission 2021, p. 65) and argues that the current My Aged Care system does not provide the personalised information and support that is required for people to be able to make decisions about their own care.

References:

Royal Commission into Aged Care Quality and Safety (2020) Aged care and COVID-19: a special report. Commonwealth of Australia. https://agedcare.royalcommission.gov.au/sites/default/files/2020-12/aged-care-and-covid-19-a-special-report.pdf 

Last updated: February 11th, 2022   Contributors: Joanna Marczak  |  

British Columbia (Canada)

Individuals receiving LTC may choose between privately or public owned LTC facilities, day services, home support, assisted living, etc. which are all publicly subsidized (source: https://www2.gov.bc.ca/gov/content/health/accessing-health-care/home-community-care/care-options-and-cost). A survey by the Angus Reid Institute found that two-thirds of Canadians (66%) would like the government to take over – or nationalize – LTCFs in order to increase the health and safety outcomes for people requiring long-term care (source: http://angusreid.org/covid19-long-term-care/).

Last updated: February 11th, 2022

Ontario (Canada)

Focussing on Ontario, an article by Bardone (2021) traces the antecedents of the COVID-19 crisis in long-term care and documents experiences of frontline staff and family members of residents during the pandemic. They argue that the marginalization of both residents and workers in Ontario’s long-term care system over two decades has eroded possibilities for recognition of their personhood. They also question broader societal attitudes toward ageing, disability, and death that make possible the abandonment of frail older people.

References:

Badone, E. (2021). From Cruddiness to Catastrophe: COVID-19 and Long-term Care in Ontario. Medical Anthropology: Cross Cultural Studies in Health and Illness40(5), 389–403. https://doi.org/10.1080/01459740.2021.1927023

Last updated: February 11th, 2022   Contributors: William Byrd  |  

Denmark

Municipalities partner with voluntary organizations to roll out community programmes to engage and reach out to older people (Olejaz et al. 2012).

Non-profit actors play mainly a role in advocacy rather than in providing services, although some provide nursing home care (Danish Deaconess Foundation and OK Foundation) while others organize self-support and peer-support activities (DaneAge Association and Danish Alzheimer Association). The DaneAge Association, a voluntary organisation with more than 825 000 members, has the most prominent role among civil society organizations and is involved in advocating the rights and well-being of older people, whilst many volunteers are themselves 65 years or older. The Elders Help Elders network, a partnership among six organizations, is one of the most visible initiatives organizing volunteers with a focus on visiting services, mobility support, shopping, practical assistance in the home, sharing meals and exercise. Non-profit organizations also play an important role in organizing volunteers in nursing homes, hospices and hospitals (WHO, 2019).

Individuals can complain to their municipality if they are not satisfied with the quality of local LTC offer and the services they receive. When a complaint is made,  the municipality must review the decision and if the decision is not changed, their complaint must be sent by municipality to a National Board of Complaints (European Commission, 2021).

References:

European Commission (2021)  2021 Long-Term Care Report Trends, challenges and opportunities in an ageing society. Luxembourg: Publications Office of the European Union,

Olejaz, M.,  Nielsen, A., Rudkjøbing, A., Okkels Birk, H., Krasnik, A., Hernández-Quevedo, C. (2012) Denmark: Health System Review. WHO European Observatory

WHO (2019), ‘Denmark: Country case study on the integrated delivery of long-term care’. Accessed at: https://www.euro.who.int/2019/denmark-country-case-study-on-the-integrated-delivery-of-long-term-care-2019).

 

Last updated: February 11th, 2022

Choice

People who use LTC at home have choice in the sense that once their care needs are assessed they can choose whether they prefer financial or in-kind support. This is embedded in the principles of the LTC insurance, which aims to support people in living a self-determined and independent life. The Care Charter emphasises people’s choice regarding where to live, care and support and their daily routine as well as financial and legal aspects (Der paritätische Gesamtverband, 2018; PKV, n.d.).

In Baden-Württemberg, the task force on LTC recognises the importance of self-determination among people with LTC needs during COVID-19 (Task Force Langzeitpflege und Eingliederungshilfe, n.d.).

References

Der paritätische Gesamtverband (2018) Workshop: Recht auf Selbstbestimmung – auch in Abhängigkeitsverhältnissen. Selbstbestimmung ermöglichen – Was heißt das für Träger in der Pflege? Available at: https://www.der-paritaetische.de/fileadmin/user_upload/Schwerpunkte/Mensch-du-hast-recht/doc/VT2018_WS-Selbstbestimmung-Pflege_ThorstenMittag.pdf (Accessed 31 January 2022).

PKV (n.d.) So funktioniert die Pflegeversicherung. Available at: https://www.pkv.de/wissen/pflegeversicherung/so-funktioniert-die-pflegeversicherung/ (Accessed 31 January 2022).

Task Force Langzeitpflege und Eingliederungshilfe (n.d.) Positionspapier der Task Force Langzeitpflege und Eingliederungshilfe „Selbstbestimmung und soziale Teilhabe trotz Corona gewährleisten“  Available at: https://sozialministerium.baden-wuerttemberg.de/fileadmin/redaktion/m-sm/intern/downloads/Downloads_Gesundheitsschutz/Corona_Positionspapier-TF-Langzeitpflege-EGH_Selbstbestimmung-Teilhabe_20201204.pdf (Accessed 31 January 2022).

Last updated: February 12th, 2022   Contributors: Klara Lorenz-Dant  |  Thomas Fischer  |  Kerstin Hämel  |  

Israel

Choice of LTC service is highly dependent on financial means and ability to acquire private LTC services. Eligibility with NII to receive state-funded services is dependent on certain proofs of retirement, disability, need, lack of income.

Last updated: February 11th, 2022

Italy

During the pandemic, the right of care home residents to emotional support and social interaction was recognised in a legal document for the first time (Bolcato et al., 2021).

With regards choice, for people whose application for access to services to the Local Health Authority is successful, there is the possibility to choose the provider that they prefer (if the providers have capacity). Social services are normally activated directly by the family. There is no national mechanism to measure satisfaction with care services (European Commission, 2021).

References: 

Bolcato M, Trabucco Aurilio M, Di Mizio G, Piccioni A, Feola A, Bonsignore A, Tettamanti C, Ciliberti R, Rodriguez D, Aprile A. (2021) The Difficult Balance between Ensuring the Right of Nursing Home Residents to Communication and Their Safety. International Journal of Environmental Research and Public Health. 2021; 18(5):2484. https://doi.org/10.3390/ijerph18052484

European Commission (2021). ‘2021 Long Term Care in the EU’ Joint report prepared by the Social Protection Committee (SPC) and the European Commission (DG Empl). Retrieved from: Publications catalogue – Employment, Social Affairs & Inclusion

Last updated: February 4th, 2022   Contributors: Eleonora Perobelli  |  Elisabetta Notarnicola  |  Adelina Comas-Herrera  |  

Japan

Once an individual is found to have needs, they are assigned a notional budget to spend on care. In theory, they can choose between competing providers, assisted by a care manager. However the care managers are mostly employed by providers. There are safeguards in place to prevent them referring all their clients to one providers but they are weak and do not fully address the conflict of interest (Curry et al. 2018).

References:

Curry, N., Castle-Clarke, S. Hemmings, N. (2018). ‘What can England learn from the long-term care system in Japan?’ Nuffield Trust Research Report. Retrieved from: https://www.nuffieldtrust.org.uk/research/what-can-england-learn-from-the-long-term-care-system-in-japan

Last updated: February 10th, 2022

Netherlands

In the Netherlands all care homes are required, by law, to have “client councils” that have the right to participate in decisions that affect their daily lives. The members of the councils are residents or their representatives, and the councils have the right to participate in the strategic management of the care homes. They need to be consulted about organisational issues and have a right to consent to decisions that affect the residents’ daily lives. They also have the right to provide advice (Zuidgeest et al. 2011; Kruse at al. 2020).

References: 

Zuidgeest, M. et al. (2011). Legal rights of client councils and their role in policy of long-term care organisations in the Netherlands. BMC Health Service Research  doi: 10.1186/1472-6963-11-215

Kruse, F., van Tol, Vrinzen, C., van der Woerd, O., Jeurissen, P. (2020). The impact of COVID-19 on long-term care in the Netherlands: the second wave. LTCcovid report 

Last updated: February 1st, 2022

Sweden

LTC Quality and Choice

The Swedish long-term care (LTC) system has been increasingly marketized over the past three decades. This has partly been driven by a want to ensure better choice for users (Meagher & Szebehely, 2013).

Swedish care services are decentralized. As they are organised and managed at a municipal level, there is a lack of standardisation of needs assessment and care processes. This means that there is some variation across local governments in the quality of services provided (source: OECD).

Predictors of Patient Satisfaction

A 2019 study by Spangler et al. investigated aspects of nursing homes in Sweden that are most associated with resident satisfaction. The most important predictor was (smaller) nursing home size (although this may be in part due to the fact that that there is less staff turnover in smaller nursing homes), followed by the activities (both physical and social) on offer to residents. Individualised care was also a factor.

References:

Meagher G., Szebehely M. (2013) Long-Term Care in Sweden: Trends, Actors, and Consequences. In: Ranci C., Pavolini E. (eds) Reforms in Long-Term Care Policies in Europe. Springer, New York, NY. https://doi.org/10.1007/978-1-4614-4502-9_3

Spangler, D., Blomqvist, P., Lindberg, Y. et al. Small is beautiful? Explaining resident satisfaction in Swedish nursing home care. BMC Health Serv Res 19, 886 (2019). https://doi.org/10.1186/s12913-019-4694-9

Last updated: February 12th, 2022

Scotland (UK)

In Scotland 80% of the care workforce work for organisations represented by Scottish Care; a membership-based organization that provides support, training and advocates for the predominantly private workforce.

Last updated: February 10th, 2022   Contributors: Jenni Burton  |  David Bell  |  Elizabeth Lemmon  |  David Henderson  |  

Vietnam

A 2020 study by Dung et al. investigated the quality of life in care homes in Vietnam; measured as a subjective assessment of mental and social well-being. Participants came from public, religion-run, and private nursing homes. Results from the study showed that nursing home residents in Vietnam generally had a moderate level of quality of life; a finding similar to studies conducted in other Asian settings such as Hong Kong and Korea. Findings from the study suggest that the services provided at private and public nursing homes are of similar quality; no significant differences in quality of life were found between the two.

References:

Dung, V., Thi Mai Lan, N., Thu Trang, V., Xuan Cu, T., Minh Thien, L., Sy Thu, N., Dinh Man, P., Minh Long, D., Trong Ngo, P., & Minh Nguyet, L. (2020). Quality of life of older adults in nursing homes in Vietnam: Https://Doi.Org/10.1177/2055102920954710, 7(2).

Last updated: January 3rd, 2022   Contributors: Daisy Pharoah  |  

1.13. Equity and Long-Term Care

Denmark

Denmark is one of the European countries with the lowest income inequality and high coverage of social and health services. The rate of poverty or social exclusion for older people  was 8.7% in 2015, about half the EU average (WHO, 2019).

References:

WHO (2019), ‘Denmark: Country case study on the integrated delivery of long-term care’. Accessed at: https://www.euro.who.int/2019/denmark-country-case-study-on-the-integrated-delivery-of-long-term-care-2019).

Last updated: February 11th, 2022

Israel

Extensive reliance on private funding has given rise to inequality in LTC services received by Israel’s older people from different socioeconomic backgrounds (source: Taub Centre).

Last updated: February 11th, 2022

Japan

A national framework for eligibility and benefits based on need only, creates consistency. Co-payment operates on a sliding scale according to income. Monthly cap on co-payments protects against high costs (Curry et al. 2018).

References:

Curry, N., Castle-Clarke, S. Hemmings, N. (2018). ‘What can England learn from the long-term care system in Japan?’ Nuffield Trust Research Report. Retrieved from: https://www.nuffieldtrust.org.uk/research/what-can-england-learn-from-the-long-term-care-system-in-japan

Last updated: February 10th, 2022

Vietnam

There is an increasing disparity in health service access between socioeconomic groups, with people in rural areas have notably less access than those in urban areas. Older people are frequently limited by mobility issues and an inability to afford health care services; in particular, long-term care. Given that chronic illness is prevalent in around 40% of older people, support for long-term elderly care has become an issue in rural areas (Hoi et al., 2011). Private nursing homes, which are more available in urban areas, are still relatively expensive for most Vietnamese people and are therefore exclusionary.

References:

Hoi, L. V., Thang, P., & Lindholm, L. (2011). Elderly care in daily living in rural Vietnam: Need and its socioeconomic determinants. BMC Geriatrics, 11. https://doi.org/10.1186/1471-2318-11-81

Last updated: December 30th, 2021   Contributors: Daisy Pharoah  |  

1.14. Pandemic preparedness of the Long-term care sector

Overview

The Organisation for Economic Co-Operation and Development (OECD) found that, while most OECD countries had some form of emergency preparedness systems, many of these overlooked the Long-Term Care (LTC) sector. They also found that only just over 50% of OECD countries had guidelines on infection control in the Long-Term Care sector, prior to the pandemic. However, this has changed in response to the pandemic: in 2021, 84% of countries have national guidelines on infection control in LTC. (Source: Rocard E., Sillitti P. and Llena-Nozal A (2021) COVID-19 in long-term care: impact, policy responses and challenges. OECD Health Working Paper No. 131).

 

United States

The LTC sector in the United States was unprepared for the pandemic; some reports have described it as disastrous and staggering. One key challenge during COVID-19 faced by the LTC sectors was the fundamental (mis)structuring of financial arrangements, which determine the reimbursement, regulatory framework, and design of the services delivered. These arrangements determine which sectors would have enough resources and systems in place (e.g. PPE, infection control training) to respond to the pandemic (source: Dawson et al., 2021; NYTimes).

Lessons on pandemic preparedness can be drawn from experiences from natural disasters, according to authors of a recent study (Peterson et al., 2021). This study explored the experiences of LTC facilities: Nursing Homes (NH) and Assisted Living Communities (ALCs) in Florida, following hurricane Irma in 2017. The findings showed that despite federal disaster preparedness regulations and experience with disasters like hurricanes, NHs and ALCs in Florida experienced issues that highlighted response gaps, highlighting that adequate preparedness goes beyond simply putting in place regulations. The study highlights the importance of lLTC organisations building and maintaining connections with those who can provide support, including relationships with emergency managers and community organisations.

References:

Dawson, W. D., Boucher, N. A., Stone, R., & Van Houtven, C. H. (2021). COVID-19: The Time for Collaboration Between Long-Term Services and Supports, Health Care Systems, and Public Health Is Now. The Milbank Quarterly, 99(2), 565–594. https://doi.org/10.1111/1468-0009.12500

Peterson, L. J., Dobbs, D., June, J., Dosa, D. M., & Hyer, K. (2021). “You Just Forge Ahead”: The Continuing Challenges of Disaster Preparedness and Response in Long-Term Care. 5(4), 1–13. https://doi.org/10.1093/geroni/igab038

Last updated: February 11th, 2022   Contributors: Daisy Pharoah  |  Joanna Marczak  |  

Australia

In a study analysing pandemic preparedness in the context of the 2009 influenza pandemic, researchers found that pandemic plans varied in detail, consistency, completeness, and usability depending on the state that issued it. Crisis communication and pharmaceutical interventions were completely missing in some states (Itzwerth et al., 2018).

Another study found that residential care staff reported issues with infection prevention and control strategies. It identified scepticism towards staff influenza vaccinations, effort required to read national guidelines, and lack of infrastructure to physically separate residents during an outbreak as the three main barriers to the management of outbreaks (Huhtinen et al., 2019)

Overall, the aged care sector in Australia struggled with pandemic preparedness even before COVID-19 – the pandemic only exposed the sector’s vulnerability (source: The Guardian).

In April 2020, the Aged Care Quality and Safety Commission contacted all aged care providers to complete an online self-assessment survey that asked about infection control systems and preparedness for a COVID-19 outbreak. 99.5% of providers claimed that their infection control and respiratory outbreak management plan covered all areas identified in the survey. The same proportion assessed their service’s readiness in the event of a COVID-19 outbreak as either satisfactory (56.8%) or best practice (42.7%). Interviews carried out for the Royal Commission found that, in hindsight, providers who experienced COVID-19 outbreaks did not think their previous self-assessments of preparedness were accurate (Royal Commission, 2020).

References:

Huhtinen E., Quinn E., Hess et al. (2018) Brief Report. Understanding barriers to effective management of influenza outbreaks in residential care facilities. Australasian Journal on Ageing 38(1):60-63. doi: 10.1111/ajag.12595

Itzwerth R, Moa A, MacIntyre C.R. (2018) Australia’s influenza pandemic preparedness plans: an analysis. J Public Health Pol 38:111-124. https://doi.org/10.1057/s41271-017-0109-5

Royal Commission into Aged Care Quality and Safety (2020) Aged care and COVID-19: a special report. Commonwealth of Australia. https://agedcare.royalcommission.gov.au/sites/default/files/2020-12/aged-care-and-covid-19-a-special-report.pdf 

Last updated: February 11th, 2022

Belgium

In a 2020 report, MSF describe the situation in a nursing home in Belgium as a ‘real humanitarian crisis’. The organisation launched an emergency intervention in March 2020 in care homes in the capital city, and later in two other locations (Wallonia and Flanders). The intervention involved an initial inspection of the facilities, followed by recommendations tailored for each care home’s specific circumstances. Continued support was provided subsequently, for example through follow-up visits to train staff, if needed.

During the initial visits, a general lack of preparedness for this kind of emergency was reported by MSF: there was a lack of knowledge and understanding among staff of basic hygiene rules and protocols concerning the use of PPE and testing. Many care homes were expected to perform the duties of hospitals, but lacked the resources to do it – for example, many did not have ample masks and aprons. The reason for this poor preparedness, according to the report, was due to the complex health and social system in Belgium that is structurally underfunded and increasingly privatised. MSF reported that after their intervention, the country was in a better position to face subsequent waves of the pandemic (MSF, 2020).

Last updated: February 11th, 2022   Contributors: Daisy Pharoah  |  

Canada

A published practice paper presenting the chronology of events in Quebec leading to excess mortality in long-term care facilities (LTCFs) highlighted the lack of preparation in LTCFs and a critical shortage of staff. The massive transfer of older persons from hospitals to LTCFs, combined with human resources management, and a critical shortage of permanent staff before and during the crisis, generated unhealthy living conditions in LTCFs (Beaulieu et al. 2021).

References:

Beaulieu, M., Cadieux Genesse, J., & St-Martin, K. (2021). High death rate of older persons from COVID-19 in Quebec (Canada) long-term care facilities: chronology and analysis. Journal of Adult Protection23(2), 110–115. https://doi.org/10.1108/JAP-08-2020-0033

Last updated: February 11th, 2022   Contributors: William Byrd  |  

British Columbia (Canada)

Information on pre-pandemic prepared in the LTC sector is lacking. However, in terms of Canadian pandemic preparedness for the general population, there is evidence that some lessons were learnt from SARS, which affected Canada more than any other country outside of Asia. While responses differed across provinces, funding for infection control in hospitals increased and legislative changes were made to allow for better collaboration between federal and provincial actors (source: https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)30670-X/fulltext?hss_channel=tw-27013292).

An independent review of the LTC response to COVID-19 was completed in October 2020 and released to the public in January 2021. The review provides a detailed analysis of the government’s and LTC sector’s preparedness. While quick policy decisions prevented further outbreaks in LTC facilities, the pandemic highlighted issues with staffing and Infection Prevention and Control (IPC) training (source: https://news.gov.bc.ca/files/1.25.2021_LTC_COVID-19_Response_Review.pdf).

Last updated: February 11th, 2022

Denmark

The health sector was prioritized during the first wave of the pandemic, and therefore there were challenges early on with preventing infections and securing resources to protect care homes. Conversely, adequate measures in LTC facilities have been implemented later on (Rostgaard, 2020).

References: 

Rostgaard T. (2020), The COVID-19 Long-Term Care situation in Denmark. LTCcovid, International Long-Term Care Policy Network, CPEC-LSE, 25 May 2020.

Last updated: February 11th, 2022

Finland

Despite a robust Pandemic Preparedness plan in Finland, social welfare units (including care homes) were only briefly mentioned. It was reported that pandemic preparedness in Finland provided insufficient guidance on care of older people during crisis (Ylilnen et al., 2021).

References:

Ylinen, T., Ylinen, V., Kalliomaa-Puha, L., Ylinen, S. (2021). ‘Finland: Governmental response to the COVID-19 pandemic in Long-Term Care residences for older people: preparedness, responses and challenges for the future’. MC Covid Working Paper, Retrieved at: CSIC_covid_FINLANDIA.pdf

Last updated: February 11th, 2022

France

Following the 2003 heatwave France had mandated the use of ‘blueprints’ in LTC facilities (and other healthcare settings) to prepare against extreme health events, and these were triggered in February 2020. However, many LTCFs did not have any ‘contingency plans’ which could provide operational support to significant pressures such as high levels of staff absence. Care homes and other LTC actors were not integrated into risk simulation exercises (source: http://www.senat.fr/rap/r20-199-1/r20-199-11.pdf, see also Rocard E., Sillitti P. and Llena-Nozal A (2021) COVID-19 in long-term care: impact, policy responses and challenges. OECD Health Working Paper No. 131).

Last updated: October 31st, 2021

Germany

Roles & responsibilities

Each of the 16 Länder carries responsibility for pandemic preparedness in their area. At the national level, the Robert Koch-Institute (RKI) takes a key role in infectious disease monitoring and prevention. The Institute also provides pandemic plans. A second federal authority with the task to reduce health related risks is the Federal Office for Civil Protection and Disaster Assistance.

Warnings

As early as in 2013, the Federal Office for Civil Protection and Disaster Assistance already warned of the risk of a pandemic through a virus of the ‘virus family Coronaviridae’.

Plans

Tasked by the government, the RKI has maintained a regularly updated National Pandemic Plan for Influenza since the early 2000s. The pandemic plan includes consideration for residential LTC as well as advice on Personal Protection Equipment (PPE) stockpiling, vaccination and training of staff. This plan has been amended to respond to the COVID-19 pandemic in March 2020.

Limitations

Despite this systemic preparedness, in practice there has been divergence in handling and applying infection prevention and control plans, the experience has shown that not all LTC settings had developed specific plans or not developed them in sufficient detail and that not all care workers, especially care assistants, had been sufficiently trained, and there has also been a shortage of PPE. The existing shortage in the care workforce posed additional challenges to the response during the pandemic (Lückenbach et al., 2021).

A paper reviewing the implications of the LTC sector due to COVID-19 established that the LTC sector was not adequately prepared for a crisis. It was highlighted that residential care settings that need to operate under economic principles have been particularly unprepared to manage crisis. Consequently, providers have been imposing strict measures to prevent blame and legal claims. The measures have severe implications on people’s self-determination and quality of life. It was also noted that closer interdisciplinary partnership could help to prepare LTC for crisis situations (Kricheldorff, 2020).

A survey conducted among care providers in April/May 2020 found that almost two thirds of care home staff were not specifically prepared for handling a pandemic during their apprenticeships, university degrees or training. Most surveyed institutions (90.7%) have run training on PPE. Among part-residential care settings almost 60% (n=96) stated that they had not been specifically prepared for a pandemic. More than half of these settings responded by setting up crisis teams. Two-thirds of domiciliary care providers surveyed did not report specific pandemic preparedness prior to COVID-19 (Wolf-Ostermann et al., 2020).

References

Kricheldorff, C. (2020) ‚Gesundheitsversorgung und Pflege für ältere Menschen in der Zukunft – Erkenntnisse aus der Corona-Pandemie’, Zeitschrift fur Gerontologie und Geriatrie53(8), 742–748. https://doi.org/10.1007/s00391-020-01809-z

Lückenbach, C., Klukas, E., Schmidt, P. H. and Gerlinger, T (2021), ‘Governmental response to the COVID-19 pandemic in Long-Term Care residences for older people: preparedness, responses and challenges for the future: Germany’, MC COVID-19 working paper 06/2021. http://dx.doi.org/10.20350/digitalCSIC/13694 Available at: https://drive.google.com/file/d/1-RDnqErydbuGGNXlM8WaFB2oSTRKStTc/view (Accessed 31 January 2022)

Wolf-Ostermann, K, Rothgang, H., Domhoff, D., Friedrich, A.-C., Heinze, F., Preuß, B., Schmidt, A.,  Seibert, K. & Stolle (2020) Zur Situation der Langzeitpflege in Deutschland während der Corona-Pandemie Ergebnisse einer Online-Befragung in Einrichtungen der (teil)stationären und ambulanten Langzeitpflege. Available at: https://media.suub.uni-bremen.de/bitstream/elib/4331/4/Ergebnisbericht%20Coronabefragung%20Uni-Bremen.pdf (Accessed 5 February 2022).

Last updated: February 13th, 2022   Contributors: Klara Lorenz-Dant  |  Thomas Fischer  |  Kerstin Hämel  |  

Hong Kong (China)

After the experience of the SARS epidemic in 2003, which resulted in the deaths of 72 care home residents, the Government published the first “Guidelines on Prevention of Communicable Diseases in Residential Care Homes for the Elderly” in 2004 and required all care home operators to designate an Infection Control Officer to coordinate and implement infection control measures (Lum et al., 2020)

References:

Lum T., Shi C., Wong G. and Wong K. (2020) COVID-19 and Long-Term Care Policy for Older People in Hong Kong, Journal of Aging & Social Policy, 32:4-5, 373-379, DOI: 10.1080/08959420.2020.1773192

Last updated: February 11th, 2022

Israel

Preparedness for COVID-19 in Israel was limited, which led to considerable death toll particularly in residential care settings. A broad public outcry about the lack of testing and preparedness, as well as some contradictory directives (e.g. on visitation) ensued. On April 20th 2020, following pressure from family caregivers, and long term care managers and staff, new guidelines were established as part of the “Fathers’ and mothers’ shield” program, which specifically addressed older people in long term care settings (Tsadok-Rosenbluth et al. 2020).

References: 

Tsadok-Rosenbluth S, Leibner G, Hovav B, Horowitz G and Brammli-Greenberg S (2020). The impact of COVID-19 on people using and providing Long-Term Care in Israel. Report available at LTCcovid.org, International Long- Term Care Policy Network, CPEC-LSE, 4 May 2020. Retrieved from Article from ltccovid.org

Last updated: February 11th, 2022   Contributors: LIAT AYALON  |  

Italy

Italy had formally updated the 2006 National Pandemic Plan for Influenza, only in late February 2020; leading to major shortcomings in the overall management of the COVID-19 outbreak.  The LTC sector was poorly prepared for the pandemic and it was not prioritised after the outbreak (in terms of Personal Protection Equipment and personnel), giving rise to multiple issues within services (high mortality rate, lack of coordination with hospitals, etc.).

The pandemic exacerbated pre-existing weaknesses within the Italian LTC sector, such as lack of coordination between and within care sectors; national and regional investments focused on acute care, neglecting LTC services; the poor management of care personnel and a lack of dedicated workforce; poor connection with other care settings and the functioning of nursing homes as acute care settings, that are neither recognised nor funded as that (Notarnicola et al., 2021).

There are indications of a large number of deaths that occurred in nursing homes during the first wave of the pandemic, and the weak capacity of public policy to provide adequate protection. The Lombardy Region had the highest mortality rate due to COVID-19 in nursing homes in Europe. Researchers argued that the negative impact of COVID-19 results from the poor development of LTC policy and from the marginality of residential institutions within the healthcare system (Arlotti et al., 2021).

References:

Notarnicola, E., Perobelli, E., Rotolo, A., & Berloto, S. (2021). Lessons Learned from Italian Nursing Homes during the COVID-19 Outbreak: A Tale of Long-Term Care Fragility and Policy Failure. Journal of Long-term Care, (2021), 221–229. DOI: http://doi.org/10.31389/jltc.73

Arlotti, M., & Ranci, C. (2021). The Impact of COVID-19 on Nursing Homes in Italy: The Case of Lombardy. Journal of Aging and Social Policy33(4–5), 431–443. https://doi.org/10.1080/08959420.2021.1924344

Last updated: February 4th, 2022   Contributors: Eleonora Perobelli  |  Elisabetta Notarnicola  |  William Byrd  |  

Japan

Japan had well-established routine protocols of prevention and control in Long-Term Care Facilities (LTCFs). Each LTCF has a mandatory infection control committee which meets regularly. Practices such as isolating residents in LTCFs suspected to have a contagious infection, such as flu, were already in place before the COVID-19 pandemic. As soon as threat level was raised (as it would be for new TB outbreak or flu), LTCFs responded rapidly, as they were already familiar with protocols to isolate residents.

At the beginning of the pandemic in 2020 many LTCFs were in full or semi-lockdown already due to seasonal flu-outbreaks in January and February, this may have inadvertently helped protect care homes from COVID-19 outbreaks (Estevez-Abe and Ide, 2021)

References:

Estévez-Abe M. and Ide H. (2021). “COVID-19 and Japan’s Long-Term Care System.” LTCcovid.org, International Long-Term Care Policy Network, CPEC-LSE, February 27, 2021. Retrieved from: ltccovid.org

 

Last updated: February 11th, 2022

Netherlands

The Netherlands had a national pandemic action plan in place as well as various obligations on hospitals and others to have disaster relief plans. However, these were seen as insufficient. It was also criticised that the government had ignored recommendations provided by experts following the 2014 Ebola outbreak and the 2018 influenza epidemic. The national plan had specific appendices for care and nursing homes (Bruquetas-Callejo and Böcker, 2021). Most Dutch Long-Term Care organisations have an Infection Prevention and Control committee (van Tol et al., 2021).

References:

Bruquetas-Callejo, M., Böcker, A. (2021) Governmental response to the COVID-19 pandemic in Long-Term Care residences for older people: preparedness, responses and challenges for the future MC Covid 19 Working Paper 11/2021

van Tol LS, Smaling HJA, Groothuijse JM, et al COVID-19 management in nursing homes by outbreak teams (MINUTES) — study description and data characteristics: a qualitative study 

Last updated: February 11th, 2022

Poland

The country was poorly prepared to deal with the pandemic, moreover, the shortfalls of the LTC system became more visible during the pandemic (e.g. limited financial resources for LTC system, poor access to tests, PPI, problems with isolating infected individuals (sources: Alert Zdrowotny 2; Alert Zdrowotny 3).

Last updated: December 16th, 2021   Contributors: Joanna Marczak  |  Agnieszka Sowa-Kofta  |  

Republic of Korea

While Korea faced similar challenges as other countries in terms of initial shortages of PPE and staff, the memory of MERS facilitated a quick and decisive response from government. This prior experience of a pandemic left a legacy which enabled 1) a good level of societal buy-in with infection control measures (eg wearing facemasks); 2) legislation was already in place to allow for close monitoring of personal data.

Last updated: November 25th, 2021

Singapore

Singapore took the threat of COVID-19 seriously early on and was able to draw on an already existing Disease Outbreak Response System framework, which had been refined based on the experiences from the Severe Acute Respiratory Syndrome (SARS) of 2003 and the H1N1 influenza pandemic of 2009 (Graham and Wong, 2020).

Following the 2003 outbreak, the government established 900 rapid response public health preparedness clinics (PHPCs) across the country, ear-marked for improved response to pandemics and outbreaks. The PHPCs serve as an intermediary between the community and hospitals, screening all patients with flu-like or pneumonia symptoms into low-risk and high-risk groups. The high risk group is referred to an infectious disease hospital for further assessment and management (Kuguyo et al., 2020).

Nursing homes in Singapore started to prepare for COVID-19 early. A case study of a large charitable nursing home’s measures shows that, as soon as news were reported from China, in January, the Nursing home’s Nursing Director and Infection Control Nurse started to work with staff to establish a command centre, setting up a screening counter, reviewing national pandemic guidelines and liaising with the Ministry of Health and the Agency for Integrated Care, and coordinating mask-fitting for all 400 staff (Goh et al., 2022)

References:

Goh, H.S.; Tan, V.; Lee, C.-N.; Zhang, H.; Devi, M.K. (2022) Nursing Home’s Measures during the COVID-19 Pandemic: A Critical Reflection. Int. J. Environ. Res. Public Health 19, 75. https://doi.org/10.3390/ijerph19010075

Graham, WCK, Wong, CH. (2020) Responding to COVID-19 in Residential Care: The Singapore Experience. LTCcovid country report, International Long-Term Care Policy Network, CPEC-LSE, 27 July 2020.

Kuguyo O., Kengne A.P., and Dandara C. (2020) Singapore COVID-19 Pandemic Response as a Successful Model Framework for Low-Resource Health Care Settings in Africa OMICS: A Journal of Integrative Biology.Aug 2020.470-478. https://doi.org/10.1089/omi.2020.0077

Last updated: February 11th, 2022

Spain

In a study of the institutional and organisational management of the COVID-19 pandemic in care homes, Del Pino and colleagues identify lack of preparedness in care homes, as well as lack of protection resources, as key factors in the slow response. Prior to COVID-19, the Spanish Ministry of Health had a plan in place that had developed to respond to Influenza (H5N1), which was used in 2009 during the H1N1 outbreak. There were also plans in place to respond to Ebola, Dengue and Zika, and one for MERS-CoV. The study found that people responsible for regional responses were not aware of those plans, potentially because they had not been in post for long. None of the plans in place had any provision for interventions in care homes (or any other collective living establishments). Although, in principle, these establishments should form part of the “critical infrastructures”, as for most people living in these centres there is no other housing alternative and these centres are needed to maintain basic social, health and wellbeing of the people living there. The fact that Spain ranked very highly in the Global Health Security Index in 2019 may have generated over-confidence in the ability of the health care system to respond, coupled with the experience of having “over-prepared” for the flu pandemic in the past. There was a lack of recognition of the increased risk this virus posed to care home residents in particular, despite awareness of the impact of flu among the older population (source: DIGITAL.CSIC).

Last updated: February 10th, 2022

Sweden

The Swedish Corona Commission highlighted that there was no overview of preparedness to tackle the pandemic. Although protecting the older population was an objective from early on in the pandemic, little attention was given to the overall lack of preparedness in the municipal social care sector until much later on. One of the factors contributing to the spread of the disease has been the large proportion of untrained casual workers in the sector.

Last updated: February 10th, 2022

PART 2.
Impacts of the COVID-19 pandemic on people who use and provide Long Term Care

2.00. Overview impacts of the Covid-19 pandemic on people who use and provide Long-Term Care

Australia

The first COVID-19 outbreak in Australian residential aged care occurred on 4 March 2020 at Dorothy Henderson Lodge, an 80-bed facility in Sydney. A second cluster followed in April 2020 in Newmarch House, a 102 bed facility in Sydney.

After the initial containment of COVID-19 in Australia in May 2020, in June 2020 a second wave in Victoria spread rapidly through Melbourne-bases nursing homes.

During 2020 and 2021 case numbers and deaths have been concentrated the in two most heavily populated states, NSW and Victoria.

Last updated: January 17th, 2022

Hong Kong (China)

After a relatively successful start of the COVID-19 pandemic, it appeared that Hong Kong’s strict zero-COVID policy had succeeded in protecting the population (including people living in care homes and relying on care from others) from COVID-19. However this situation has changed during the Omicron wave (see question 2.02). Perhaps due to this early success, the vaccination rates among older people are very low, even among the care home population.

Last updated: March 23rd, 2022

Spain

In Spain, the covid crisis has revealed the fragility of the long-term care system and has had a significant impact on the men and women who provide care, both in families (unpaid) and paid. In the social care sector, carers include family caregivers, care service workers and domestic workers. In all these cases, there is a strong predominance of women, many of whom have experienced the effects of the pandemic with great vulnerability and precariousness (Comas-d’Argemir et al., 2021).

The social care sector was practically ignored at the beginning of the pandemic until the extreme situation in care homes triggered a new crisis within the health emergency. This neglect had severe consequences for older people and people with disabilities and carers. The delay in supplying protective equipment to the workers facilitated contagion between the staff and the residents. There was also a strong impact of covid in care homes in other European countries, but Spain is one of those that suffered it most virulently (see the LTCcovid compilation of data here). Social, political, and cultural factors that give little value to social care, older people and people with disabilities, explain this neglect and the deficits of the social care system (Daly, 2020). The underfunding of the dependency care system also had an impact: historical lack of investment, setbacks in applying the Dependency Law, insufficient staff in the services, and precarious working conditions (Costa-Font et al., 2021; Navarro and Pazos, 2020). The coronavirus crisis has highlighted all of these problems and, at the same time, has given visibility to the importance and essential role of care in maintaining life and for the functioning of the economy and society (Bahn et al., 2020).

In part due to the urgency of the pandemic, the role of women in health crises has tended to be ignored (Smith, 2019), and this has also happened in Spain with the coronavirus pandemic. While the government assumed the health part of the pandemic, it placed the rest of the responsibility to fight the pandemic with households. The confinement and the measures adopted with the declaration of the state of alarm, which lasted for months, led to an increase in care tasks at home and required an extraordinary effort, especially from women (Comas-d’Argemir and Bofill -Poch, 2021). The family has been the pillar of the response to the pandemic, without this being explicitly acknowledged. The pandemic has redistributed social functions (due to the closure of day centres, educational centres, a saturation of health services, etc.) which have been assumed fundamentally by the women of the family. In parallel, the impact of covid on health and social care personnel, who have had to work without adequate protection materials and in unsafe working conditions, has also been cause for concern. The pandemic has confronted workers with unprecedented, high-tension situations that are emotionally difficult to deal with (related to illness and death, fear, isolation…), which in many cases have left profound consequences on their physical and psychological health. Women have been working on the front lines of the pandemic, and although the health sector has received social recognition for its work, this has not been the case with nursing home or care service workers (Comas-d’Argemir et al., 2021).

Video accounts of the experience of providing care in Spain during the pandemic (in Spanish)

These videos were made for the project CUMADE: El cuidado importa. Impacto de género en las cuidadoras/es de mayores y dependientes en tiempos de la Covid-19 (Comas-d’Argemir y Bofill-Poch, 2021).

Conxita and Rafael: family carers

 

Participants: Rafael Hervás (Castellon), who is carer to his wife and Conxita Vallès (Barcelona), who is a carer to her mother.

Iñaki: functional diversity support

 

Participant: Iñaki Martínez (Barcelona), who is a personal assistant and President of the Asociación Profesional de Asistencia Personal.

Ruth and Janire: Care professionals in care homes

Participants: Ruth González (L’Ametlla del Vallès), who is a geriatric assistant at the Fundació Antònia Roura care home, and Janire Diaz (Bilbao) who is a trade unionist, responsible for the socio-health area of Gipuzkoa in the Syndicate Eusko Langileen Alkartasuna- Solidarity of Basque Workers (ELA).

Patricia and Carolina: home care workers

Participants: Carolina Elías (Madrid), President of the association Servicio Doméstico Activo (SEDOAC) and Patricia Zapata (L’Hospitalet de Llobregat), Domestic and care worker, member of the association Mujeres Unidas entre Tierras (MUET)

Marina: Community initiatives

Participant: Marina García (Granada) Promoter of the Albaicín Town Hall Care Group, Granada

 

Caring in the pandemic (ALL PARTICIPANTS)
References

Bahn, Kate; Cohen, Jennifer y Van del Meulen Rodgers, Yana (2020): “A feminist perspective on COVID-19 and the value of care work globally”, Gender Work Organization, 27, 695-699.

Comas -d’Argemir, Dolors y Bofill-Poch, Sílvia (2021): “Entrevista a María Ángeles Durán ‘Pandemia y Cuidados’”, en Dolors Comas-d’Argemir y Sílvia Bofill-Poch (eds.), El cuidado de mayores y dependientes. Avanzando hacia la igualdad de género y la justicia social, Barcelona, Icaria, 35-54.

Comas-d’Argemir, Dolors; Legarreta, Matxalen y García Sainz, Cristina (2021), “Residencias, las grandes olvidadas”, en en Comas-d’Argemir, Dolors y Bofill-Poch, Sílvia (eds.) (2021): El cuidado importa. Impacto de género en las cuidadoras/es de mayores y dependientes en tiempos de la Covid-19, Fondo Supera COVID-19 Santander-CSIC-CRUE Universidades Españolas. www.antropologia.urv.cat/es/investigacion/proyectos/cumade/

Costa-Font, Joan; Jiménez Martin, Sergi y Viola, Analía (2012): “Fatal underfunding? Explaining COVID-19 mortality in Spanish nursing homes”, Journal of Aging and Health, 33, 7-8, 607-617.

Daly, Mary (2020): “COVID?19 and care homes in England: What happened and why?”, Social Policy & Administration, 54, 7, 985-998.

Navarro, Vicenç y Pazos, María (2020): El cuarto pilar del Estado del Bienestar. Propuesta para cubrir necesidades esenciales de cuidado, crear empleo y avanzar hacia la igualdad de género. Propuestas presentadas en el Grupo de Trabajo de Políticas Sociales y Sistema de Cuidados de la Comisión para la Reconstrucción social y económica del Congreso de los Diputados (15 de junio), Enlace.

Last updated: March 21st, 2022   Contributors: Carlos Chirinos  |  

Turkey

In Turkey, older people (over 65s) and children under 20 were subject to a strict curfew between March and June 2020 (Akkan, 2020).

Case Study of a Care Home in Istanbul (Özten et al, 2021)

A recent report describes successful pandemic response measures in a nursing home in Istanbul. This nursing home (which is one of the biggest nursing homes in the country, with 679 residents) managed to avoid COVID-19 cases altogether (for both residents and employees) during the first year of the pandemic by using a working plan to successfully prevent cross-contamination.

Within the first month of the global outbreak, this nursing home had introduced the use of protective equipment and temperature checks for all employees (including face-shields and disposable clothing), the announcement of a COVID-19 protocol – including preventative measures and an algorithm for positive cases – and temporary suspension of new admissions and visitors, among other measures. In the eleven months to follow, further safety measures were implemented such as regular PCR testing for all staff, restricted access for staff to different areas of the building, and an assigned quarantine ward for residents with suspicious symptoms.

Psychosocial support was given to residents, to mitigate fears of death and abandonment: exercise activities were carried out periodically, and the message “we are with you, you are not alone and unattended” was repeatedly communicated to residents. Psychosocial support was also offered to staff, whose levels of stress increased due to the newly implemented 15-day shift patterns. Group communication therapies were offered, and various solutions were offered to mitigate feelings of anxiety from being separated from family (Özten et al, 2021).

References:

Akkan B and Canbazer C (2020) The Long-Term Care response to COVID-19 in Turkey. LTCcovid, International Long-Term Care Policy Network, CPEC-LSE, 10 June 2020.

Özten O, Aytekin Akta? T, Süer H, Do?an H, Üner A, Özp?nar S, Ayy?ld?z Y, Bekta? H, Saka B. 2021. A 15-day Working Shift Prevent the Cross-contamination of Coronavirus Disease-2019 in a Nursing Home in Turkey. Eur J Geriatr Gerontol 2021;3(3):131-133

Last updated: January 26th, 2022   Contributors: Daisy Pharoah  |  

Vietnam

There is little information available on the impacts of the COVID-19 pandemic on those who use and provide LTC specifically.  Compared with other countries, and as a result of strong and multidimensional solutions and a compliant population, Vietnam maintained a relatively low number of confirmed infections and older patients throughout most of the pandemic (Tung, 2020).

Economic Impact

As most elderly people in Vietnam live with their families, a major source of income for older people is family support. However, because of the pandemic and related lockdowns, more than half the workforce has been negatively affected: the income of roughly 75% of all households has reduced. This has compromised the amount of assistance that households can provide to older family members, including those with older members who need medical care. These households are therefore at increased risk of falling into poverty as a result of the pandemic (source: Aging Asia report).

References:

Tung, L. T. (2020). Social Responses for Older People in COVID-19 Pandemic: Experience from Vietnam. Journal of Gerontological Social Work, 63, 682–687. https://doi.org/10.1080/01634372.2020.1773596

Last updated: December 30th, 2021   Contributors: Daisy Pharoah  |  

2.01. Impact of the COVID-19 pandemic on the country (total population)

Australia

Overview

Between January 2020 and July 2021 there were just over 30,000 COVID cases in Australia with 910 deaths (58% of the deaths were in people over 85 years of age). Most of the COVID cases during this period were concentrated in two major waves of COVID in Australia interspersed with periods of low or zero community transmission with occasional localised COVID outbreaks. During this time, Australia states were either for the suppression and/or elimination of COVID control achieved by tight border restrictions, hotel quarantine, lockdowns, density limits in venues, mask wearing (in 2021), high levels PCR testing, contact tracing and isolation. Between November 2020 and July 2021 Australia had largely eliminated community transmission of COVID with the exception of localised outbreaks.

A third wave started in July 2021 in NSW which spread to Victoria.

From November/December 2021, following a vaccination program with targets of at least 80% vaccination for adults, the national focus changed from suppression/elimination to “living with COVID” and managing it like any other disease. This resulted state governments lifting most restrictions in most states (excluding Western Australia) including border restrictions and hotel quarantine and reducing contact tracing and isolation requirements for both COVID positive people and their close and casual contacts.

In late November the Omicron strain was sequenced in Australia. In December 2021 and January 2022 there was a rapid acceleration of COVID cases in all states in Australia (except Western Australia), with NSW and Victoria most affected.

As of the 23rd March 2022 there have been 3,868,171 confirmed COVID-19 infections in Australia, and 5,789 deaths, according to the Australian Department of Health. There are currently 402,837 estimated active cases in Australia. So far, deaths amount to 223 per 1 million population.

Although case numbers declined in January and early-mid February in NSW, Victoria, ACT, the Northern Territory, South Australia and Tasmania case numbers have started during late February to early March in all states except for the Northern Territory. From the beginning of February cases began rising in Western Australia which, as a result of strict internal and external borders and quarantine policy, has been largely free of community transmission of COVID. Both international and interstate borders were lifted on the 3rd of March 2022.

More details about the spread of COVID in Australia are given below.

The first wave

The first case of COVID-19 in Australia was identified on January 25, 2020, from a man who travelled from Wuhan to Melbourne.  Prime Minister Scott Morrison announced the Australian Health Sector Emergency Response Plan for Novel Coronavirus on February 27, 2020, and the first economic stimulus package on March 12, 2020. By mid-March, most states and territories were in lockdown. Cases began falling across the country in April, and on May 8, 2020, the government announced a three-stage plan to ease lockdown restrictions.

The second wave

The second wave was limited mostly to Victoria (June – October) and was managed with a strict lockdown.

Localised COVID outbreaks

Despite Australia’s suppression/elimination strategy, there were some leaks out of hotel quarantine.  Australian states used contact tracing and “snap lockdowns” to halt community transmission of the virus during smaller outbreaks.

Third wave (Delta strain)

In July 2021, an outbreak of the Delta strain started in Sydney resulting in a third wave of COVID infections. NSW implemented a strict lockdown. The outbreak spread to Victoria where a lockdown was also implemented. The case numbers decreased substantially through November and early December.

Omicron and “living with COVID”

From mid-December 2021 and early January 2022 introduction of the Omicron strain of the virus, the concomitant easing of restrictions in most states and a change in policy directions which focus on “living with COVID” there has been rapid acceleration of COVID infections.  Limitations on PCR testing capacity, extensive delays for PCR testing and lack of access to rapid antigen tests in the community has meant that the available case data is likely to be an underrepresentation of the number of active cases.

Hospitalisation rates and death among recipients of aged care services have been lower during 2021 than in the 2020 waves.

Last updated: March 23rd, 2022   Contributors: Erica Breuer  |  

Bulgaria

As of December 2, 2021, there have been 697,162 confirmed cases of COVID-19 in Bulgaria, and 28,542 deaths, according to the European Centre for Disease Prevention and Control, corresponding to 412 attributed deaths per 100,000 population.

Last updated: December 5th, 2021   Contributors: Disha Patel  |  

British Columbia (Canada)

As of February 7, 2021, there have been 69,716 confirmed COVID-19 infections in British Columbia and 1,246 deaths attributed to COVID-19, corresponding to 25.45 COVID-19 attributed deaths per 100,000 population (Source: https://resources-covid19canada.hub.arcgis.com/app/cases-cases-per-100k-population-webapp).

The first presumptive positive case of COVID-19 in British Columbia was identified on January 28, 2020. The first case of community transmission was announced on March 5, 2020. On March 18, a provincial state of emergency was declared in British Columbia, and by the end of March, all schools, personal service establishments, and dine-in restaurant services were closed. Health officials considered British Columbia to be successful in flattening the curve by late April and on June 24, the province entered phase 3 of its restart plan, where most establishments were allowed to reopen and non-essential travel within the province resumed. A second wave of COVID-19 was declared in British Columbia on October 19 and in November, mandatory mask policies and new restrictions against social gatherings were introduced. In December, Pfizer and Moderna vaccines were approved for use in Canada. The first dose of COVID-19 vaccine in British Columbia was administered on December 15. As of January 29, 2021, 129.421 vaccine doses have been administered. Current restrictions on social gatherings, restaurant services, fitness centres, and travel have been extended indefinitely (Source: https://bc.ctvnews.ca/scroll-through-this-timeline-of-the-1st-year-of-covid-19-in-b-c-1.5284929).

Last updated: November 6th, 2021

China

As of December 2, 2021, there have been 98,897 confirmed cases of COVID-19 in China, and 4,636 deaths, according to the National Health Commission, corresponding to 0.33 attributed deaths per 100,000 population.

Last updated: December 5th, 2021   Contributors: Disha Patel  |  

Croatia

As of December 2, 2021, there have been 613,914 confirmed cases of COVID-19 in Croatia, and 10,967 deaths, according to the European Centre for Disease Prevention and Control, corresponding to 246 attributed deaths per 100,000 population.

Last updated: December 5th, 2021   Contributors: Disha Patel  |  

Cyprus

As of December 2, 2021, there have been 134,965 confirmed cases of COVID-19 in Cyprus, and 598 deaths, according to the European Centre for Disease Prevention and Control, corresponding to 49.5 attributed deaths per 100,000 population.

Last updated: December 5th, 2021   Contributors: Disha Patel  |  

Czech Republic

As of December 2, 2021, there have been 2,193,289 confirmed cases of COVID-19 in The Czech Republic, and 33,317 deaths, according to the European Centre for Disease Prevention and Control, corresponding to 311 attributed deaths per 100,000 population.

Last updated: December 5th, 2021   Contributors: Disha Patel  |  

Denmark

As of February 8, 2021, there have been 202,051 confirmed cases of COVID-19 in Denmark, and 2,216 deaths, according to the Danish Health Authority, corresponding to 38.5 attributed deaths per 100,000 population.

Last updated: December 4th, 2021

Estonia

As of December 3, 2021, there have been 224,195 confirmed cases of COVID-19 in Estonia, and 1,810 deaths, according to the  European Centre for Disease Prevention and Control, corresponding to 127 attributed deaths per 100,000 population.

Last updated: December 5th, 2021   Contributors: Disha Patel  |  

Finland

As of February 21, 2021 there have been 53,742 confirmed cases of COVID-19 in Finland, and 726 deaths, according to Our World in Data. These numbers have been steadily rising since March 2020, when the first lockdown measures were announced and the first death was reported (March 20) (Source: https://drive.google.com/file/d/19z_e5j7bcPxUYh2qLBa6VwrVDVnWilv7/view). Numbers of cases, testing, and deaths are being recorded by the Finnish Institute for Health and Welfare (THL) (Source: https://experience.arcgis.com/experience/92e9bb33fac744c9a084381fc35aa3c7).

Last updated: August 3rd, 2021

France

As of Dec 01, 2021, there have been 7,778,575 confirmed cases of Covid-19 in France, and 120,112 deaths attributed to COVID-19 corresponding to 179.11 per 100,000 population. A summary of measures taken is available.

Last updated: December 3rd, 2021   Contributors: Camille Oung  |  

Germany

Latest numbers

As of 4th February 2022, there have been 10,671,602 confirmed COVID-19 infections in Germany, and 118,504 deaths attributed to COVID-19, according to the RKI (Robert Koch Institut, 2022a, 2022b).

Impact of the different waves

The first wave of COVID-19 infections was relatively mild in Germany, however, the second wave (experienced mostly between December 2020 and January 2021) and the third wave (March to April 2021) were much more severe. The fourth wave has had the highest number of infections so far and it gradually eased at the end of 2021. Due to the fast spread of the Omicron variant, the fifth wave is expected to be the strongest in terms of infection figures (ZDF 2022, Schilling et al., 2021, RKI 2022). The death toll was highest in the second wave, followed by the fourth wave (RKI, 2022).

References

Robert Koch Institut (2022) Wöchentlicher Lagebericht des RKI zur Coronavirus-Krankheit-2019 (COVID-19)  – 06.01.2022 – AKTUALISIERTER STAND FÜR DEUTSCHLAND. Available at: https://www.rki.de/DE/Content/InfAZ/N/Neuartiges_Coronavirus/Situationsberichte/Wochenbericht/Wochenbericht_2022-01-06.pdf?__blob=publicationFile

Robert Koch Institut (2022a) Situation reports from Monday to Friday. Available at: https://www.rki.de/EN/Content/infections/epidemiology/outbreaks/COVID-19/Situationsberichte_Tab.html (Accessed 5 February 2022).

Robert Koch Institut (2022b) Coronavirus Disease 2019 (COVID-19) Daily Situation Report by the Robert Koch Institute 04/02/2022- CURRENT STATUS FOR GERMANY. Available at: https://www.rki.de/DE/Content/InfAZ/N/Neuartiges_Coronavirus/Situationsberichte/Feb_2022/2022-02-04-en.pdf?__blob=publicationFile (Accessed 5 February 2022).

Schilling, J., Tolksdorf, K., Marquis, A., Faber, M., Pfoch, T., Buda, S., Haas, W., Schuler, E., Altmann, D., Grote, U., Diercke, M & RKI COVID-19 Study Group (2021) ‘Die verschiedenen Phasen der COVID-19-Pandemie in Deutschland: Eine deskriptive Analyse von Januar 2020 bis Februar 2021’ Bumdesgesundheitsblatt – Gesundheitsforschung – Gesundheitsschutz, 64, pp.1093-1106. Available at: https://link.springer.com/article/10.1007/s00103-021-03394-x

Last updated: February 12th, 2022   Contributors: Klara Lorenz-Dant  |  Thomas Fischer  |  Kerstin Hämel  |  

Greece

As of December 3, 2021, there have been 951,351 confirmed cases of COVID-19 in Greece, and 18,325 deaths, according to the European Centre for Disease Prevention and Control, corresponding to 171 attributed deaths per 100,000 population

Last updated: December 5th, 2021   Contributors: Disha Patel  |  

Hong Kong (China)

As of April 8, 2022, more than 1.17 million people have contracted the virus since the onset of the fifth wave of COVID-19 (starting from 31 Dec 2021), involving 8,430 deaths. About 96% of the deaths were people aged 60 years and over, while over 70% are those aged 80 years and over. The latest data on the epidemic situation of the 5th wave in Hong Kong can be found on the Government’s news site.

 

Last updated: April 11th, 2022   Contributors: Cheng Shi  |  

Hungary

As of December 3, 2021, there have been 1,134,869 confirmed cases of COVID-19 in Hungary, and 35,122 deaths, according to the European Centre for Disease Prevention and Control, corresponding to 365.6 attributed deaths per 100,000 population.

Last updated: December 5th, 2021   Contributors: Disha Patel  |  

Israel

As of November 23, 2021, there have been 1,341,262 cases of COVID-19 in Israel and 8,178 deaths (Source: Clalit, 2021). According to Israel’s COVID Data Dashboard, those aged 70 and older have accounted for approximately 79% of COVID-19 related deaths in Israel so far. The pandemic was maintained at a reasonably low number of infections in Israel between February 21, 2020 (first case detected) and September 2020, with an effective first lockdown easing by May. In September 2020, the first major wave coinciding with the Jewish High Holidays resulted in a second lockdown. This first wave peaked at 6,276 cases on September 27. In tandem with a record-breaking vaccination campaign rollout, a second wave began in mid-December. The daily number of cases peaked at 8,624 on January 17, 2021, with the majority of cases due to a new, more virulent strain (Source: CGD). On November 22nd, there were only 711 new cases, assumably attributed mainly to the booster shots given to 4,054,691 Israelies.

Last updated: December 5th, 2021   Contributors: LIAT AYALON  |  Shoshana Lauter  |  

Italy

As of November 3rd, 2021 4.785.867 Italians tested positive for Covid-19 since the beginning of the pandemic, 131.560 people died from the virus, and 95.1% of deaths concerned people aged 60 or more (source: Ministry of Health).

The share of people fully vaccinated against Covid-19 is higher than the average of the European Union: 72% vs 66% respectively.

Sources:

Istituto Superiore de Sanità. Epidemia COVID-19. Aggiornamento Nazionale 3 novembre 2021.

Our World in Data. Coronavirus (COVID-19 Vaccinations), accessed 5th November 2021.

Last updated: November 9th, 2021   Contributors: Eleonora Perobelli  |  Elisabetta Notarnicola  |  

Japan

As of February 5, 2021, there have been 399,048 confirmed COVID-19 infections in Japan, and 6,135 deaths attributed to COVID-19, according to the World Health Organisation, corresponding to 4.851 COVID-19 attributed deaths per 100,000 population. Japan is among other Asian countries reporting lower infection fatality rates than other parts of the World (Source: https://ageingasia.org/wp-content/uploads/2020/12/COVID_LTC_Report-Final-20-November-2020.pdf). Most of the early attention on Japan was focused on the Diamond Princess cruise ship: people on board started a 2-week quarantine on February 5, 2020 (Source: https://pubmed.ncbi.nlm.nih.gov/32183930/).

Last updated: August 3rd, 2021

Latvia

As of December 3, 2021, there have been 255,402 confirmed cases of COVID-19 in Lativa, and 4,232 deaths, according to the European Centre for Disease Prevention and Control, corresponding to 222.56 attributed deaths per 100,000 population.

Last updated: December 6th, 2021   Contributors: Disha Patel  |  

Liechtenstein

As of December 3, 2021, there have been 4,779 confirmed cases of COVID-19 in Liechtenstein, and 62 deaths, according to the European Centre for Disease Prevention and Control, corresponding to 162.57 attributed deaths per 100,000 population.

Last updated: December 5th, 2021   Contributors: Disha Patel  |  

Malaysia

The first COVID-19 case in Malaysia was reported on 24th January 2020, and the number of cases began to increase two months later, in March (Jamaluddin et al., 2022). As of February 2022, the total number of COVID-19 cases in Malaysia is just under 3.1 million, and there have been 32,180 deaths. The greatest increase in the number of cases was seen in the second half of 2021, with the peak in infections seen in August 2021 (as a result of the Delta variant) (source: Worldometres).

Since the end of August 2021, the majority of deaths have been in the over 60 age-group (source: Malaysia MOH). Between 24 February and 14 September 2021, the median age of people who died from COVID-19 was 61 years old, and most deaths occurred in the 60-69 age group. Higher mortality rates were observed in the population who were unvaccinated (Abdul Taib et al., 2022).

Although the pandemic affected all of Malaysian society, vulnerable communities and low-income groups were affected in particular. It is thought that just over half a million households that were in the middle 40% income group fell to the bottom 40% group as a result of the pandemic (source: Yeo, 2021).

References:

Abdul Taib, N. A., Baha Raja, D., Teo, A. K. J., Kamarulzaman, A., William, T., HS, A. S., Mokhtar, S. A., Ting, C. Y., Yap, W. A., Kim, M. C. Y., & Edwin Amir, L. (2022). Characterisation of COVID-19 deaths by vaccination types and status in Malaysia between February and September 2021. The Lancet Regional Health – Western Pacific, 18, 100354. https://doi.org/10.1016/J.LANWPC.2021.100354/ATTACHMENT/96E09F81-FB57-495F-9CE7-DFDA52281B3C/MMC1.DOCX

Jamaluddin, F., Sheikh Dawood, S. R., Ramli, M. W., & Mohd Som, S. H. (2022). Bouncing back from the pandemic? A psychosocial analysis of older adults in urban areas of Malaysia. Http://Www.Editorialmanager.Com/Cogenthumanities, 9(1). https://doi.org/10.1080/23311983.2021.1996045

 

Last updated: February 16th, 2022   Contributors: Daisy Pharoah  |  

Netherlands

During the first wave of the pandemic, Southern regions of the Netherlands were hardest hit, with Carnival celebrations being one of the main catalysts. The second wave started in September 2020, and by November was most pronounced in the West, including in the large urban centres Amsterdam, Rotterdam, and the Hague. An overview of the first year of the pandemic is available here.

Sources: https://ltccovid.org/wp-content/uploads/2020/11/COVID-19-Long-Term-Care-situation-in-the-Netherlands-_-the-second-wave-25-November-2020-2.pdf.

Last updated: January 6th, 2022

Pakistan

Official sources report that as of January 2022, the total number of confirmed COVID-19 cases is around 1.4 million, and deaths around 29,000. However, this is likely to be a substantial underestimate of the real levels of COVID-19 cases and mortality due to limited testing capabilities (Ahmed, 2021 and Our World in Data).

Last updated: January 27th, 2022   Contributors: Daisy Pharoah  |  

Republic of Korea

As of February 5, 2021, there have been 80,524 confirmed COVID-19 infections in South Korea, and 1,464 deaths, according to Our World In Data, corresponding to 2.8 deaths per 100,000 population.

Last updated: August 3rd, 2021

Romania

As of December 3, 2021, there have been 1,781,957 confirmed cases of COVID-19 in Romania, and 56,684 deaths, according to the European Centre for Disease Prevention and Control, corresponding to 293.91 attributed deaths per 100,000 population.

Last updated: December 6th, 2021   Contributors: Disha Patel  |  

Slovakia

As of December 3, 2021, there have been 1,207,728 confirmed cases of COVID-19 in Slovakia, and 14,696 deaths, according to the European Centre for Disease Prevention and Control, corresponding to 269.222 attributed deaths per 100,000 population.

Last updated: December 6th, 2021   Contributors: Disha Patel  |  

Sweden

According to the National Board of Health and Welfare, As of February 14, 2022, 15,522 people had died attributed to COVID-19 in Sweden, of these, 65.7% were aged 80 or over.

 

Last updated: February 22nd, 2022

Scotland (UK)

National Records of Scotland (NRS) publish weekly figures on death registrations where COVID-19 was mentioned on the death certificate as either confirmed COVID-19 or suspected COVID-19. According to this data, as of the 28th November 2021, there have been 12,127 deaths where COVID-19 was mentioned on the death certificate.

Last updated: March 8th, 2022   Contributors: Jenni Burton  |  David Bell  |  Elizabeth Lemmon  |  David Henderson  |  

United States

As of early March 2021, the United States had identified 29.5 million cases of COVID-19, and over 530,000 deaths. As of this date, the United States has been the country hit hardest by the pandemic per capita.

Last updated: July 29th, 2021

Vietnam

Given high economic openness and a large population, with many people living in crowded areas, Vietnam had high risks of being devastated by COVID-19 (Tung, 2020). However, Vietnam was called a ‘COVID exemplar’ by Our World in Data, who reported that by the end of 2020 Vietnam had reported only 1,465 laboratory confirmed cases of COVID-19 and 35 deaths. By comparison, by this time the United Kingdom had suffered some 72,000 deaths (source: GOV.UK) and the USA roughly 385,000 (source: CDC). Egypt, which has a similar population to Vietnam although lower population density, had suffered around 7,000 COVID-19 deaths by the end of 2020 (source: worldometres).

This relative success may be attributed to several factors. Key containment decisions were made within a few days of the outbreak; a decision which took some other governments several weeks. It is likely that Vietnam was able to act as quickly as it did due to its experience and existing relevant infrastructure, having experienced a severe acute respiratory syndrome (SARS) epidemic in 2003 and avian influenza between 2004 and 2010.

Vietnam’s proactive containment strategy was based on comprehensive detecting, contact tracing, and containment. Testing was scaled up in areas with community transmission, and three degrees of contacts was traced each time a positive case was identified. These individuals were placed in government-run quarantine centres. Areas where community transmission had been demonstrated were immediately locked down (source: Our World in Data). Furthermore, the population in Vietnam was relatively compliant, having high reported levels of trust in the authorities (Tung, 2020).

The second half of 2021 was less of a success story for Vietnam as a fourth, and most complicated and dangerous, wave hit the nation (Minh et al., 2021). From early June, confirmed cases began to grow exponentially and went from around 7,500 to around 1.7 million by the end of the year. This was mainly due to the emergence of the new (delta) variant, which spread quickly within hospitals in Vietnam, and also in large industrialised zones and communities. The sudden spike in community cases put a huge burden on the system; in particular on healthcare services and track and trace (Minh et al., 2021). Cumulative deaths were at 48 on the 1st June 2021, but similarly grew exponentially in the second half of the year and had reached just under 32,000 by the end of 2021. The main spikes in death were in August, early September, and December (source: Our World in Data).

To date (end of December, 2021), there have been no reported cases of the Omicron variant (source: Reuters).

References:

Minh, L. H. N., Khoi Quan, N., Le, T. N., Khanh, P. N. Q., & Huy, N. T. (2021). COVID-19 Timeline of Vietnam: Important Milestones Through Four Waves of the Pandemic and Lesson Learned. Frontiers in Public Health, 9, 1587. https://doi.org/10.3389/FPUBH.2021.709067/BIBTEX

Tung, L. T. (2020). Social Responses for Older People in COVID-19 Pandemic: Experience from Vietnam. Journal of Gerontological Social Work, 63, 682–687. https://doi.org/10.1080/01634372.2020.1773596

Last updated: December 30th, 2021   Contributors: Daisy Pharoah  |  

2.02. Deaths attributed to COVID-19 among people using long-term care

Overview

People who use long-term care services and rely on care and support from others have been at increased risk of the severe impacts of COVID-19, particularly those living in group settings such as care homes.

Due to the alarm cause by the large number of deaths among care home residents some countries started reporting data on the numbers of COVID-19 infections and associated deaths among care home residents (Comas-Herrera et al., 2021). Very few countries publish data of COVID-10-related deaths among people who use  community-based care.

For an international overview please visit:

International data on deaths attributed to COVID-19 among people living in care homes

There is a growing literature analysing factors associated with higher mortality of care home residents. A Rapid Review by the McMaster University National Collaborating Centre for Methods and Tools (NCCMT, 2020) published in December 2020 (before vaccinations) found that:

  • – The strongest association with COVID infections in care homes is the incidence of infections in the surrounding community (moderate certainty of evidence).
  • – Some characteristics of the residents: old age, racial/ethnic minority status, male sex where linked to increased risk of infections and mortality (low certain of evidence).
  • – With regards characteristics of care homes, high staffing by registered nurses was associated with lower risks of infections and mortality, for-profit status, facility size/density and movement of staff between facilities was found to increase risk of COVID-19 infections (low certainty of evidence).
References:

Comas-Herrera A, Zalakain J, Lemmon E, Henderson D, Litwin C, Hsu AT, Schmidt AE, Arling G, Kruse F and Fernandez J-L (2021) Mortality associated with COVID-19 in care homes: international evidence. Article in LTCcovid.org, International Long-Term Care Policy Network, CPEC-LSE, 1st February 2021.

National Collaborating Centre for Methods and Tools. (2020). What risk factors are associated with COVID-19 outbreaks and mortality in long-term care facilities and what strategies mitigate risk? Update 1. https://www.nccmt.ca/knowledge-repositories/covid-19- rapid-evidence-service

Australia

As of the 18th March 2022 there were 360 active outbreaks in residential aged care in Australia, with 1,613 residents and 1,542 staff affected.

As of 18th March 2022, there have been 20,154 confirmed cases of COVID-19 among subsidized residents in aged care facilities. There have been 1,879 deaths so far. Among people who use government-subsidized home care, there have been 192 confirmed cases of COVID-19 and 13 deaths. As of 18th March 2022 there have been 5,736 deaths among the whole population suggesting that 32.8% of all COVID-19 deaths in Australia have been among care home residents. These figures are based on people who have tested positive for COVID-19 and are for the place of residence, not place of death, so may include residents who died in hospital. In 2020, there were approximately 208,500 people living in aged care residential accommodation in Australia. Therefore, the numbers of care home COVID-19 deaths would amount to 0.90% of this population (source: AIHW).

A weekly report publishes data on the number of outbreaks and staff infected in care homes. As of 18th March 2022, there have been 24,216 cases of staff with COVID-19 infections.

About the data:

The Australian Department of Health first published deaths linked to COVID-19 in care homes and among users of home care services on April 15, 2020.

Last updated: March 23rd, 2022   Contributors: Erica Breuer  |  

Austria

During the earlier part of the pandemic, Austria was among those countries that had reported fewer deaths in care homes. During the second wave of the COVID-19 pandemic, Austria experienced very high rates of infections, reflected in a steep rise in infections and deaths due to COVID-19 in care homes (Source: https://ltccovid.org/2020/11/27/the-second-wave-has-hit-austria-harder-also-in-care-homes/). Through the spring and summer months infection rates fell but as of November 2021, infection growth rates are increasing again.

As of November 1st 2021, there are 69,730 residents in care homes (including all ages) Of this population, 3,953 have died. Compared to the 11,369 total deaths linked to COVID-19 in Austria on the same date, deaths of care home residents would represent 35% of all deaths.

According to data from September 17, 2020, only 0.4% of care home residents had died after the first wave. By November 2021, this number has risen to 5.7%. This is based on there being 69,730 residents in care homes in Austria (BM für Arbeit, Soziales, Gesundheit und Konsumentenschutz (2019) Pflegevorsorgebericht 2018. Vienna, BMASGK).

Last updated: December 4th, 2021   Contributors: Andrea E. SCHMIDT  |  Disha Patel  |  

Belgium

Belgium first reported official estimates of the number of deaths in care homes on April 11, 2020. The data is collected by Sciensano, a public research institution, which publishes very detailed epidemiological daily reports on COVID-19, including data on the number of deaths in care homes (“maisons de repos”). As of April 15, 2020, reports have also included the number of tests done within care homes. For deaths outside hospitals, Belgium reports both “confirmed” cases (through a test or, since April 1, a chest scan), and “suspected” cases where the patient had not been tested but a doctor confirmed that their symptoms were consistent with COVID-19. Deaths in nursing homes are notified by the regional authorities with a 2 day delay, and are classified according to the date of death.

As of April 22nd, 2022, there have been 31,319 deaths linked to COVID-19 in Belgium. Of these 14,216 were residents in care homes and 10,261 occurred in the institutions themselves (source: Sciensano).  Belgium has an estimated 125,000 people aged 65 and over living in care homes. The number of deaths in care homes linked to COVID-19 so far would represent 11.37% of this population (source: KCE).

Last updated: May 3rd, 2022   Contributors: Daisy Pharoah  |  Disha Patel  |  

Brazil

There is no official data on the number of cases and mortality related to COVID-19 across Brazilian care homes. A report published in September 2020, found that there had been over 4,015 confirmed cases and 937 deaths in Brazilian care homes, which represents a case fatality rate of 23.33%. This was based on data collated informally by the researchers.

An article published in December 2021 describing morbidity and mortality in long term care facilities in the state of Bahia, Brazil, found COVID-19 incidence of 30.71% in residents of a 175 facility sample from April 2020 to June 2021. According to this data 19.97% cases in older residents required hospitalisation and there was an 11.63% case fatality rate, which the authors noted to be lower than expected. (Source: COVID-19 morbimortality in long-term care facilities in the state of Bahia, Brazil)

Last updated: January 2nd, 2022   Contributors: Disha Patel  |  William Byrd  |  

Canada

The National Institute on Ageing Long-Term COVID-19 Tracker Open Data Working Group collects information on confirmed and presumptive positive, resident and staff cases and death in long-term care settings in Canada from multiple sources including public health units, government reports, media,  information posted bu homes publicly and shared with their staff, residents and family. Given this, all cases reported cannot be guaranteed to be laboratory confirmed. This data is updated twice a week.

In Wave 1 (up to September, 2020) NIA data shows there were 7,310 deaths, across 1,171 LTC facilities with outbreaks, making up 74% of total deaths from COVID-19 in Canada for that wave. In Wave 2 (still ongoing at the publishing of this data on February 15, 2021) there were a further 7,016 deaths across, 1,389 LTC facilities with outbreaks. At this time resident deaths across both waves represented 67% of total deaths from COVID-19 in Canada.

As of April 25, 2022, there have been 16,780 COVID-attributed deaths in care home residents. As of the 2016 census Canada had 425,755 residents living across 6029 LTC facilities. Thus, the number of COVID-19 related deaths of LTC residents represents 3.94% of the estimated population in care homes.

Last updated: May 3rd, 2022   Contributors: Disha Patel  |  

Chile

There are no official publicly available estimates of the total number of people who use care who have died with COVID-19 infections. The lack of data on the impact of the pandemic is particularly problematic in the unregulated sector (Browne et al., 2020).

References:

Browne J, Fasce G, Pineda I, Villalobos P (2020) Policy responses to COVID-19 in Long-Term Care facilities in Chile. LTCcovid.org, International Long-Term Care Policy Network, CPEC-LSE, 24 July 2020.

Last updated: December 22nd, 2021

Denmark

The data on cases and deaths within nursing homes are published weekly every Tuesday by the Statans Serum Insititut under the Danish Department of Health. Deaths among confirmed residents are defined as deaths among residents who died within 30 days of a positive covid-19 PCR test (from the data first tested).

As of April 19, 2022, there have been 6,019 deaths from COVID-19 in the whole population. There have been 2,204 deaths of care home residents. Therefore, the share of confirmed deaths among nursing home residents was 40% (Source: https://covid19.ssi.dk/overvagningsdata/ugentlige-opgorelser-med-overvaagningsdata).

There were just over 40,000 nursing home residents in Denmark, which suggests that 4.69% of this population have died from confirmed COVID-19.

 

Last updated: May 3rd, 2022   Contributors: William Byrd  |  Disha Patel  |  

Finland

As of April 8, 2021, 80,842 people have tested positive for COVID-19 and 866 people have died. Of those, 29% (approximately 251) died in social care 24-hour units (Source: https://thl.fi/en/web/infectious-diseases-and-vaccinations/what-s-new/coronavirus-covid-19-latest-updates/situation-update-on-coronavirus#Coronavirus_situation). In 2018, there were 50,298 residents in social care 24-hour units (Source: https://thl.fi/fi/tilastot-ja-data/tilastot-aiheittain/ikaantyneet/sosiaalihuollon-laitos-ja-asumispalvelut). Therefore, the number of COVID-19 related deaths in these units represents 0.50% of this population.

Last updated: August 2nd, 2021

France

France first published official death estimates for people in care homes on March 31, 2020. Deaths from COVID-19 are recorded where either the death of a confirmed case or a death attributed to COVID-19 by the physician in the medical certificate of death.

Data published by the Ministry of Health on April 1, 2021 (Wave 1 & Wave 2), reported a total of 95,264 COVID-19 related deaths, of which 36,889 (39%) were residents in care homes. Of these, 26,044 (71%) died in the care homes and, particularly in the earlier part of the pandemic, were mostly “probable cases” (people who were not tested but a doctor confirmed that the symptoms were associated with COVID-19). The remaining 10,845 died in hospital and were confirmed through testing. As of April 1, 2021, there have been 201,766 confirmed infections among care home residents, and 105,980 among care home staff.

As of January 26th 2022, further data published by the Ministry of Health reported a total of 129,747 COVID-19 related deaths, of which 44,253 (34.1%) were care home residents. Of these, 27,403 died within a care home setting. There are an estimated 605,061 care home beds in France. Therefore, the number of deaths of care home residents linked to COVID-19 would represent 7.31% of all the available beds (Source: https://www.insee.fr/fr/statistiques/3676717?sommaire=3696937).

Last updated: February 7th, 2022   Contributors: William Byrd  |  Disha Patel  |  

Germany

About the data:

Germany’s Robert Koch-Institute published the first official number of infections and deaths in different care settings on April 22, 2020. People in care and nursing homes are covered under §36 of the Protection Against Infection Law (IfSG). §36 also includes people living in facilities for those with disabilities or other care needs, homeless shelters, community facilities for asylum-seekers, repatriates, and refugees, and so the data is not directly comparable with the data on care homes presented for the other countries.

Data recorded here only includes confirmed cases following a laboratory diagnosis independent of clinical assessment. In addition, the Robert Koch Institute advises that information on care setting is missing in 37% of cases, which means that the number of people affected represents the minimum number of cases in specific care settings. A report estimated that, based on a survey of care homes, the share of deaths of care home residents attributed to COVID-19 by May 2020 was 49% of all COVID-19 deaths, which is higher than the rate that would result from the Robert Koch Institute data at the time (36%).

Deaths linked to COVID-19 in residential care

According to Germany’s Robert Koch-Institute, 25,789 residents of residential long-term care facilities (aged 60 and above) died in association with a SARS-CoV-2 infection during the course of the pandemic until week 4 of 2022 (Robert Koch Institut, 2022a). This figure may include a small proportion of staff and visitors in addition to residents, as attribution is not always clear. Thus, out of 118,504 death associated with the Covid pandemic in total, deaths associated with care homes constitute 21.76 % (Robert Koch Institut, 2022b).

The total number of people living in care and nursing homes in Germany in 2017 was 818,000, and assuming that there were a similar number in 2020 and that all the deaths in communal establishment were residents, 3.15% of all care home residents would have died due to COVID-19 (Source: Statista).

Deaths linked to COVID-19 among people who use care in the community

The number of users of community care or persons who are being cared for without the assistance of professional services in the community is unclear. The last data on this group was published on 16 July 2021 when the number of deaths was reported as 195 persons (Robert Koch Institut, 2021). However, the validity of this figure is questionable as data collection does not account for persons in need of care in a standardizes way.

References

Robert Koch Institut (2021) Täglicher Lagebericht des RKI zur Coronavirus-Krankheit-2019 (COVID-19) 16.07.2021 – AKTUALISIERTER STAND FÜR DEUTSCHLAND. Available at: https://www.rki.de/DE/Content/InfAZ/N/Neuartiges_Coronavirus/Situationsberichte/Jul_2021/2021-07-16-de.pdf?__blob=publicationFile (Accessed 5 February).

Robert Koch Institut (2022a) Wöchentlicher Lagebericht des RKI zur Coronavirus-Krankheit-2019 (COVID-19) 03.02.2022 – AKTUALISIERTER STAND FÜR DEUTSCHLAND. Available at: https://www.rki.de/DE/Content/InfAZ/N/Neuartiges_Coronavirus/Situationsberichte/Wochenbericht/Wochenbericht_2022-02-03.pdf?__blob=publicationFile (Accessed 5 February 2022).

Robert Koch Institut (2022b) Coronavirus Disease 2019 (COVID-19) Daily Situation Report by the Robert Koch Institute 04/02/2022- CURRENT STATUS FOR GERMANY. Available at: https://www.rki.de/DE/Content/InfAZ/N/Neuartiges_Coronavirus/Situationsberichte/Feb_2022/2022-02-04-en.pdf?__blob=publicationFile (Accessed 5 February 2022).

 

Last updated: February 12th, 2022   Contributors: Klara Lorenz-Dant  |  Thomas Fischer  |  Kerstin Hämel  |  

Greece

As of January 31, 2021 there were 1,512 cases of COVID-19 amongst nursing home residents and 228 deaths, accounting for 4% of COVID-19 related deaths according to The National Public Health Organisation and The European Centre for Disease Prevention and Control. This corresponds to 2.1 COVID-19-related deaths per 100 nursing home beds in Greece.

Last updated: December 6th, 2021   Contributors: Disha Patel  |  

Hong Kong (China)

Data availability

There is no regularly published official data on the number of deaths of care home residents in Hong Kong, so this section reports data from credible media sources.

Early part of the pandemic

In Hong Kong, until 2022, the strategy of zero-COVID was successful in limiting infections in care homes. As of December 2020, there had been 20 care homes with outbreaks. This resulted in 124 residents and 29 staff members testing positive for COVID-19. Of these 124 residents, 32 had died, accounting for 19% of all COVID-19 related deaths in Hong Kong.

Omicron wave

The situation has been very different since the arrival of the Omicron wave. Since March 2022 there have been major outbreaks in care homes and large number of deaths. The media reported, on March 23 2022, that, of the just over 6000 deaths in the whole population to that date, 60% were care home residents. In addition, a total of 33,758 care home residents (45% of the total) were infected at that time in 776 care homes.

This high impact of the Omicron variant has been attributed to low vaccination rates among older people and lack of isolating facilities within care homes.

Size of care home population

In June 2020 there were 76,091 care home places in Hong Kong. Therefore, the number of deaths of care home residents linked to COVID-19 so far would represent 2.3% of this population.

Last updated: April 11th, 2022   Contributors: Cheng Shi  |  

Hungary

As of August 27, 2020, there have been 142 COVID-19 related deaths in care homes, accounting for 23% of all deaths (142 of 614). These COVID-19 related deaths only account for people who have tested positive and died (Source: https://koronavirus.gov.hu/cikkek/idosotthonok-142-koronavirussal-fertozott-gondozott-hunyt-el-kozuluk-55-en-pesti-uton).

Because less than 3% of the population aged over 65 lives in care homes in Hungary, it is expected that the share of deaths in care homes in Hungary will be lower than in other countries. In 2018, the total number of residents of care homes was 55,170, of which 50,589 were aged 65 or more. Assuming the number of residents hasn’t changed, then the share of care home residents who have died as of August 27, 2020, would be 0.3%.

Last updated: August 2nd, 2021

Ireland

Ireland has a centralised system to collect epidemiological information in relation to cases of COVID-19 infections (Source: https://ltccovid.org/wp-content/uploads/2020/04/Ireland-COVID-LTC-report-updated-28-April-2020.pdf). All deaths, in all care settings and dwellings, related to COVID-19 that are notified to the Health Prevention Surveillance Centre are included in the official count of deaths. A weekly report detailing mortality by place of death and as linked to outbreaks is published by the HSPC.

A report by the Department of Health and the Health Prevention Surveillance Centre published in December 2020, estimated that up to December 13, 2020, there had been 1,112 deaths linked to COVID-19 in nursing homes. On that date, there had been 2,110 deaths attributed to COVID-19 in Ireland. Therefore, deaths of nursing home residents represented 51% of all deaths linked to COVID-19, but this figure has changed during the pandemic, suggesting lessons from the first wave may have improved the capacity of nursing homes to fight the pandemic. Based on the data in the same report, during what was the first wave in Ireland (up to early August 2020), the proportion of COVID-19 deaths attributed to nursing home residents was 54%, but in the second wave (August to October 2020) it was 38%, and between November and mid-December the share was 34%.

As of April 16th 2022, there have been a total of 6,964 deaths due to COVID-19 in Ireland, of which, 2,543 are linked to outbreaks in nursing homes and 2,240 occurred within residential institutions (including community hospital/long stay unit, homeless facility, mental health facility and nursing homes) themselves. Thus deaths linked to nursing home outbreaks represent 36.5% of all deaths from COVID-19. There are an estimated 30,000 people living in nursing homes. Therefore, 8.47% of all nursing home care residents would have died because of COVID-19 as of April 2022.

Last updated: May 3rd, 2022   Contributors: Disha Patel  |  William Byrd  |  

Israel

The first outbreak in a long-term care facility in Israel began in mid-March 2020, sixteen days after the first patient was diagnosed in Israel. Only a month after the initial outbreak, and following massive public criticism and a call for help from the managers of long-term care facilities, the Israeli government appointed a national-level team to manage the COVID-19 outbreaks in long-term care facilities. As of October 12, 2020, there have been 704 COVID-19 related deaths in long-term care facilities, which accounts for 39% of the total deaths in the population. There were 45,000 people in long-term care facilities in Israel. Therefore, the number of COVID-19 related deaths in these facilities represents 1.56% of this population . Furthermore, according to a survey, 50% of all COVID-19 related deaths occurred in residential care settings, while the overall share of people infected in care homes only amounts to 8.5%. Although the Israel Ministry of Health provides ongoing statistics concerning COVID-19 deaths, place of residence does not appear on their dashboard, even though age is used as a descriptor.

Sources:

Tsadok-Rosenbluth, S., Hovav, B., Horowitz, G. and Brammli-Greenberg, S., 2021. Centralized Management of the Covid-19 Pandemic in Long-Term Care Facilities in Israel. Journal of Long-Term Care, (2021), pp.92–99. DOI: http://doi.org/10.31389/jltc.75

Last updated: December 5th, 2021   Contributors: Shoshana Lauter  |  LIAT AYALON  |  

Italy

For the first wave of the pandemic in Italy, the only data available on the virus outbreak in LTC services are for nursing homes, thanks to the results from a survey carried out by the National Health Institute (Istituto Superiore di Sanità), which was sent to 3,292 nursing homes out of the 3,417 NHs for people living with dementia. These data cover the period between February 1st and May 5th and were published on June 17, 2020. By May 5, 2020, 1,356 nursing homes had responded. The total mortality rate during that time was 9,1% (considering all deaths). The COVID-19 related mortality rate (tests and suspected) was 3,1%.

In September, 2021 the National Health Institute published a new report on the results of the surveillance of COVID19 cases from October 5th 2020 to September 19th 2021 for a sample of Long-Term Care Facilities (LTCFs) representing 31,178 beds. Overall, 341 out of the 852 facilities were nursing homes for older adults, counting 15,031 beds. Indicators show an increase in both COVID-19 cases and deaths in the months of October and November 2020, in line with the second epidemic wave in Italy. However, in contrast with the national data, there was a progressive reduction of COVID-19 cases, hospitalizations of SARS-CoV-2 positive residents and deaths in LTCFs in the period from February to April 2021. This trend is associated with the start of the vaccination campaign, which prioritised nursing home residents and severely vulnerable people, as well as LTCFs staff.

In the months of July, August and September 2021, there was slight increase in COVID-19 cases, both in residents and among the staff. This relates to the increase in the number of new cases in the general population in the same period. However, despite the increase in new cases and outbreaks in the monitored facilities, the number of deaths from COVID-19 occurring in LTCFs remained very low (< 0.01% per week), and this is probably due to the protective effect of the SARS-CoV-2 vaccination against the most severe forms of COVID-19.

Although the surveillance showed a significant decrease in new SARS-CoV-2 positive cases in LTCFs during the period May-June 2021, a slight increase of positive cases has been observed during summer, in the period July-September 2021. Yet, the Institute claims that this trend shall not be overlooked: rather, it suggests the opportunity to strengthen the immune protection through an additional dose of vaccine, as already provided for by the Ministry of Health

At present, these reports are the only official data on deaths related to the pandemic in LTCFs, urging for a comprehensive revision of monitoring systems in the LTC sector.

Sources:

Berloto, S., Notarnicola, E., Perobelli, E., Rotolo, A. (2020) Italy: Estimates of mortality of nursing home residents linked to the COVID-19 pandemic. LTCcovid, International Long Term Care Policy Network, CPEC-LSE, 25 June 2020.

National Health Institute (2021). Surveillance of COVID19 at LongTerm Care Facilities. Italian National Report. Time course of the COVID19 epidemic. October 5th 2020 September 19th 2021

Ministry of Health (2021). Circular no. 43604 of September 27th

Last updated: November 8th, 2021   Contributors: Eleonora Perobelli  |  Elisabetta Notarnicola  |  

Japan

There is no publicly available official data on the numbers of people who use or provide care who have had COVID-19 infections or whose deaths are attributed to COVID-19. It was reported that 14% of all COVID-19 was the result of infections in care homes in early May 2020.

Last updated: August 3rd, 2021

Lithuania

As of January 24, 2022, there have been 7,782  COVID-19 related deaths (defined as the number of deaths for which COVID-19 was identified as the primary cause of death by physicians on the death certificate), of which 415 were wards of social care institutions (5.3%) (Source: Ministry of Social Security and Labor of the Republic of Lithuania and the European Centre for Disease Prevention and Control). There are 13,100 residents in social care institutions in Lithuania. Therefore, the total number of COVID-19 related deaths in social care institutions represents 3.17% of all residents.

Last updated: February 7th, 2022   Contributors: William Byrd  |  Disha Patel  |  

Netherlands

During the first wave, the National Institute for Public Health and the Environment (RIVM) estimated that about 40% of nursing homes had experienced outbreaks. By May 15, 2020, about 7% of residents in nursing homes had been infected and 2% had died. A report published in November 2020 noted that approximately 50% of all COVID-19 related deaths during the second wave were residents of nursing homes.

As of March 6, 2021, there had been 8,446 COVID-19 related deaths of care home residents. Accounting for 51% of the total COVID-19 deaths in the Netherlands. These numbers are an underestimation of the actual COVID-19 deaths because not all those who died due to COVID-19 will have been tested (especially at the beginning of the pandemic). Only people over 70 years of age are included in these statistics.

As of April 25, 2022, there are 10,867 COVID-19 related deaths of care home residents and 22,227 deaths in the Netherlands overall (Source:https://coronadashboard.rijksoverheid.nl/landelijk). Thus care home residents account for 48.8% of the total COVID-19 deaths. The Netherlands has approximately 125,000 care home residents, so the deaths represent 8.7% of residents.

Statistics Netherlands (CBS), a governmental organisation, provides weekly updates on observed mortality. They distinguish the mortality figures by long-term care users and age. They also provide expected figures based on the previous 5 years to estimate excess mortality. These figures show that there has been 9.9% excess mortality (observed-expected/expected) among long-term care users since the start of the pandemic to the end of January, 2022, compared to 8.5% excess mortality among the wider population (outside long-term care).

Last updated: May 3rd, 2022   Contributors: Adelina Comas-Herrera  |  Disha Patel  |  

New Zealand

As of March 25, 2021, there have been 16 COVID-19 related deaths in Aged Residential Care facilities, accounting for 57% of all COVID-19 related fatalities (Source: https://www.health.govt.nz/our-work/diseases-and-conditions/covid-19-novel-coronavirus/covid-19-current-situation/covid-19-current-cases#summary). The Aged Residential Care sector comprises 38,000 beds in over 650 facilities throughout the country. Therefore, the number of deaths in aged care facilities represents 0.04% of all beds.

Last updated: August 2nd, 2021

Poland

Data illustrated that by 12 November 2021, there were overall 78 555 deaths attributed to Covid 19. People aged 65 years or more constituted about 80% of all Covid-19 deaths and people aged 80 years or more about 44%. Moreover, an early report showed that in June 2020 about 9% of COVID-19 cases were related to infections in long-term care facilitates in Poland: 3% in nursing and care homes and 6% in social welfare homes.

Expert highlighted that the situation in Poland in terms of absolute numbers of deaths among the elderly in LTC facilities is not as dramatic as in other countries because care is provided mainly in families rather than through formal services, e.g. less than two percent of the elderly reside in LTC facilities whilst provision of home care is also low (sources: Alert Zdrowotny 2; Ageing policies-access to services in different EU Member States).

Sources:

Raport zakazen koronawirusem (SARS-CoV-2) -Portal Gov.pl (www.gov.pl)

Sowa-Kofta, A. Responding to the Covid19 in residential long-term care in Poland

Alert Zdrowotny 2

Ageing policies – access to services in different EU Member States.

Last updated: November 24th, 2021   Contributors: Joanna Marczak  |  Agnieszka Sowa-Kofta  |  

Portugal

Although no official reports have been published, the Government of Portugal released the number of deaths in nursing homes to the media. According to data published in the media, as of January 10, 2021, 2,254 people have died in nursing homes, corresponding to 2.27% of all the 99,000 residents in legal care homes in Portugal. On the same date, 7,803 deaths attributed to COVID-19 had been reported in Portugal. Therefore, the deaths of care home residents as a share of total deaths would be 28.9% (Source: https://covid19.min-saude.pt/wp-content/uploads/2021/01/314_DGS_boletim_20210110.pdf).

Last updated: August 3rd, 2021

Republic of Korea

Data on the numbers of deaths linked to COVID-19  is reported in a regular briefing document provided by the Central Disease Control Headquarters. While the report is released daily, specific data on deaths of people who use Long-Term Care is reported sporadically. The most recent data is from 23rd October 2021.

Of the 2,745 COVID-19 deaths in the whole population by 23rd October 2021, 465 (16.9%) have been attributed to those in long-term care hospitals, while 253 (9.2%) have been attributed to long-term care facilities, or nursing homes. Another 97 (3.5%) deaths were attributed to other community-based LTC providers such as adult day care centres and senior welfare centres.

As for place of death, vast majority of deaths (92.2%) occurred in the hospital inpatient setting. The remaining 4% occurred in the ER, 3.2% at home, and 0.6% other (overseas, in transport, etc.)

In 2019, according to OECD data, there were 210,284. Therefore, 0.12% of this population are estimated to have died from COVID-19. There were 483,433 patients hospitalized in the 1,560 long-term care hospitals in 2018. Therefore, 0.1% of this population would have died from COVID-19.

Last updated: February 20th, 2022   Contributors: Hongsoo Kim  |  

Singapore

In August 2021 there had only been 42 COVID-19 related deaths in Singapore, with a small share of those in care homes. When there was a smaller number of deaths and individual reporting of cases, it was possible to identify deaths of people who lived in care homes. However, since Singapore pivoted to an endemic COVID-19 strategy, once a high (over 80%) vaccination rate had been achieved, the number of deaths has increased rapidly, with many outbreaks in care homes. No separate data is published for care homes (Feng Tan and Feng Tan, 2021).

The Ministry of Health’s dashboard reports that there have been 882 deaths linked to COVID-19 on 11th February 2022.

References:

Feng Tan L. and Feng Tan M. (2021) Pandemic to endemic: New strategies needed to limit the impact of COVID-19 in long-term care facilities. Journal of the American Geriatrics Society.  70(1): 72-73. https://doi.org/10.1111/jgs.17556

Last updated: February 11th, 2022

Slovenia

As of October 31, 2021, there have been 5,149 deaths in total, and 2,997 among the care home population, representing 58% of all deaths (Source: National Institute of Public Health). In 2017, there were 22,904 people living in long-term care institutions in Slovenia. Therefore, the share of residents who would have died linked to COVID-19 would be 13.09% (Source: https://www.stat.si/StatWeb/en/News/Index/8579).

Last updated: December 5th, 2021   Contributors: William Byrd  |  Disha Patel  |  

Spain

The Spanish National Institute of Older People and Social Services (IMSERSO) publishes weekly reports  on deaths linked to COVID-19 in care homes, collecting data from all regions and including care homes for younger people. The data is collected in line with The European Surveillance System (TESSy) of the European Centre for Disease Prevention and Control (ECDC).

Cumulative estimated number of deaths linked to COVID-19 among care home residents:

So far, the total number of deaths linked to COVID-19 among care home residents (until the 6th of February 2022) is 32,639. The total number of deaths in the whole population (confirmed through testing) is 95,163 up to 9th February, 2022. Adding the suspected cases among care home residents in the first wave (10,546, see above) would bring this to 105,531. The estimated share of all deaths (confirmed and suspected) linked to COVID-19 who were care home residents in the whole period would be 30.9%. Comparing the number of deaths with the estimated number of residents in 2019, 333,920 (estimate by Envejecimiento en Red) suggests that the number of deaths linked to COVID so far represents 9.77% of the number of care home residents at the beginning of the pandemic.

First wave: difficulties estimating the number of deaths linked to COVID-19

Due to lack of testing at the beginning of the pandemic, there is some uncertainly about the number of people who had a COVID-19 infection and died in that period. IMSERSO estimates that, until 22nd June 2020, there were 27,411 deaths from all causes among care home residents. Of these, 9,753 had COVID infections confirmed through testing, and 10,546 had symptoms compatible with COVID. So the total number of care home residents who died with either a COVID-19 infection or compatible symptoms (suspected COVID) were 20,299. In the total population, official data shows that, during the same period, the total number of people who died with confirmed COVID infections was 29,692, there is no national estimate of the numbers of people who died with suspected COVID in the population. To estimate the total number of people who died linked to COVID in Spain during the first wave (up to 22nd June) we can add the number of suspected COVID deaths among care home residents to the total number of official deaths in the population, resulting in an estimate of 40,238 COVID-related deaths. Based on this, the share of COVID deaths that would have been care home residents would be 50.4% in the first wave.

2020: Estimated number of deaths linked to COVID-19 among care home residents

In total in the year 2020 there were 26,335 deaths among care home residents linked to COVID-19 (confirmed and suspected).

2021: Estimated number of deaths linked to COVID-19 among care home residents

During 2021 there were 5,205 deaths of care home residents who had tested positive for COVID-19, of these, 3,686 took place before the 1st of March, the date when the initial COVID-19 vaccination of care home residents was completed. There were 1,519 deaths in the period post-vaccination until the end of year.

2022 so far: Estimated number of deaths linked to COVID-19 among care home residents

As of the 6th February there have been 1,099 deaths of care home residents who had tested positive for COVID-19.

Excess mortality among people registered with the public LTC system:

IMSERSO also publishes a monthly report on excess mortality among people registered with the Spanish System for Autonomy and Dependency Support (SAAD). Between March 2020 and December 2021 there 71,539 excess deaths (compared to average in previous five years) among people in the SAAD register (19.7% more than expected), affecting 3.77% of people registered with the system. 78.9% of those whose death is counted as “in excess” were aged 80 and over (56,411 people).

Excess mortality was much higher among people who receive their SAAD benefits through residential care, amounting to 29,435 (11.8% of all recipients), among those receiving benefits for community or home-based care there were 44,977 excess deaths, representing 5.2% of recipients.

Last updated: February 14th, 2022

Sweden

The National Board of Health and Welfare has reported statistics about mortality by COVID-19 as recorded as the underlying cause of death on the death certificates for users of long-term care over the age of 70 since the beginning of 2020. Mortality and cases are reported separately for users of residential facilities and home care, and numbers remain provisional as death certificates are submitted within 3 weeks of the date of death. These figures may underestimate total mortality as they exclude individuals aged 69 and below.

As of April 11, 2022, there have been 16,396 deaths in Sweden from COVID-19. Of these 6,546 (40%) have occurred in residents of care homes. On October 31, 2019, there were 82,217 care home residents in Sweden. Therefore, the total number of COVID-19 related deaths in care home residents represents 7.96% of this population.

As of April 5, 2021, there were 12,598 deaths in Sweden where COVID-19 was mentioned on the death certificate, of which 5,446 (43%) were among care home residents, and 3,277 among people who use care services in their own home (26%). Of the deaths of care home residents, 4,887 happened in the care home (90%). The regional differences at this time were strong in Sweden. In the Stockholm region, 7 % of care home residents had died, while there were hardly any COVID-19 deaths in care homes in several other regions (Sources: https://aldrecentrum.se/wp-content/uploads/2021/02/Johansson-L.-Sch%C3%B6n-P.-2021.-Governmental-response-to-the-COVID-19-pandemic-in-Long-Term-Care-residences.pdf; https://ltccovid.org/wp-content/uploads/2020/07/The-COVID-19-Long-Term-Care-situation-in-Sweden-22-July-2020-1.pdf).

 

Last updated: May 3rd, 2022   Contributors: William Byrd  |  Disha Patel  |  

Switzerland

Data on COVID-19-related mortality among people living in care homes is only available for a few cantons. In the canton of Geneva where these data are published regularly, and as of January 27, 2021, there have been 674 COVID- related deaths, of which 511 (76%) were care home residents, and 110 of people who received domiciliary care. An estimated 46% (310) of all COVID-19 related deaths happened in care homes, suggesting that 39% of all care home residents who died from COVID-19 did so in hospital. There are an estimated 4,125 care home beds in Geneva. Therefore, the number of COVID-19 related deaths in care homes represents 12.4% of this population (Source: https://www.bfs.admin.ch/bfs/fr/home/statistiques/sante/etat-sante/personnes-agees.assetdetail.15724050.html).

Last updated: October 27th, 2021

Turkey

On September 30, 2020, the Minister of Heath announced that the official figures of COVID-19 refer to the number of COVID-19 ‘patients’ (who have received treatment), whereas COVID-19 ‘cases’ (who tested positive but do not show any symptoms) have not been included in the published data since July 29, 2020. As of October 2, 2020, the total number of patients was 321,512 and 8,325 COVID-19 related deaths have been recorded (Source: https://covid19.saglik.gov.tr/?_Dil=2).

No recent official data on deaths of care home residents has been released by the Ministry. Based on public statements of government officials provided on different platforms, as of May 7, 2020, there have been 1,030 diagnosed COVID-19 cases in care institutions where the resident had been admitted to a hospital and 150 deaths of care home patients. The deaths in nursing homes accounted for 4% of all COVID-19 deaths in Turkey (Source: https://ltccovid.org/wp-content/uploads/2020/06/The-COVID-19-Long-Term-Care-situation-in-Turkey.pdf).

Last updated: August 3rd, 2021

England (UK)

COVID-attributed deaths among care home residents

The Office for National Statistics (ONS) provide weekly updates of deaths registered in England, which include any death where COVID-19 was mentioned on death certificates.

In wave 1 (up to September 2020), ONS  data shows that there were 19,783 registered deaths attributed to COVID-19 among care home residents in England, and 20,388 in wave 2 (from 12 September 2020 to 2 April 2021). Due to constraints in testing during the first wave, the ONS data shows that during wave 1 there around 26,087 more deaths in the period of the first wave compared to the average number of deaths observed on the same dates in the previous five years. In contrast, during the second wave, when care homes had much better access to testing, excess deaths amounted to 1,145. It is important, as ONS point out, to interpret excess deaths with caution, particularly in wave 2, as occupation rates in care homes were lower and the population that survived wave 1 is likely to be younger and healthier.

Between 3rd April 2021 and 14th April 2022, based on data from the ONS, we calculate that there were 4,658 COVID-attributed deaths registered among care home residents in England. This brings the cumulative number of deaths of care home residents registered as attributed to COVID since the beginning of the pandemic to 44,829. This figure does not include deaths that may have been due to COVID but not identified as such (particularly at the beginning of the pandemic when care homes had little access to tests). The total number of registered deaths attributed to COVID-19 in England IS 176,004 (Source: ONS).

According to ONS estimates, between 2019 and 2020 there were 391,027 people living in care homes in England. Therefore, the number of COVID-19 related deaths of care home residents represents 11.25% of the population in care homes when the pandemic started.

In July 2021, the Care Quality Commission published care home level data on deaths notifications involving COVID-19 for the period from April 10, 2020, to March 31, 2021. In total, the Care Quality Commission had been notified of 39,017 deaths in that period that took place in 6,765 care homes.

COVID-attributed deaths among people who use home care

Data on people who use home care is available through the ONS for the period up to 2nd April, by then the deaths of 2,226 people who used home care had been linked to COVID-19.

Deaths linked to COVID-19 among people living with intellectual disabilities

Multiple studies using data sources have reported higher COVID-19 mortality rates among adults with intellectual disabilities in England. An analysis of notifications of deaths of people with intellectual disabilities to the LeDeR programme up to 5 June 2020 reported an estimated COVID-19 mortality rate of 3.6 for adults with intellectual disabilities compared to the general population. The ONS linked primary care record data to death certificate data from 24 January to 20 November 2020, reporting age-standardised mortality hazard ratios for COVID-19 of 3.5 for men with intellectual disabilities and 4.0 for women with intellectual disabilities aged 30+. Controlling for residence type (private household, care home and other communal establishments) reduced these COVID-19 mortality hazard ratios to 2.1 for men and 2.2 for women. A further analysis linking primary care record data (using a less expansive set of codes for intellectual disability than the ONS analysis) to death certifications reported a COVID-19 mortality hazard ratio of 8.2 for adults with intellectual disabilities aged 16+ between 1 March and 31 August 2020; and 7.4 between 1 September 2020 and 8 February 2021 (Williamson et al., 2021).

Deaths linked to COVID-19 among people living with dementia

According to ONS estimates, around half of all COVID-19-attributed deaths among care-home residents in England and Wales between March 2020 and April 2021 (waves 1 and 2), were people who were known to have with dementia.

References:

Williamson, et al, (2021). OpenSAFELY: Risks of COVID-19 hospital admission and death for people with learning disabilities – a cohort study. BMJ doi: https://doi.org/10.1101/2021.03.08.21253112 

Last updated: May 3rd, 2022   Contributors: William Byrd  |  Disha Patel  |  

Northern Ireland (UK)

The Northern Ireland Statistics and Research Agency publish data on deaths, including those where COVID-19 (suspected or confirmed) is mentioned on the death certificate.

As of March 5, 2021, there had been 2,839 COVID-19 related deaths, with 762 of these occurring in care homes (27%). Furthermore, there had been 997 COVID-19 related deaths of care home residents. Therefore as of Wave 2 care home residents accounted for 35% of all COVID-19 related deaths in Northern Ireland.

As of April 15, 2022, there have been 4,519 deaths COVID-19 related deaths of which 1,270 (28%) were care home residents. 968 deaths have occurred within care homes. There are 14,935 care home residents in Northern Ireland. Therefore, the number of COVID-19 related deaths of care home residents represents 8.5% of this population.

Last updated: May 3rd, 2022   Contributors: William Byrd  |  Disha Patel  |  

Scotland (UK)

Since May 25, 2020, the Care Inspectorate Scotland (CIS) has reported weekly data on notifications of deaths of care home residents. Care homes are required to note whether COVID-19 was noted as confirmed or suspected on the death certificate.

As of April 24, 2022, the Scottish Government has reported 14,332 deaths where COVID-19 was mentioned on the death certificate. As of the same date, CIS has reported 4,726 deaths of care residents of suspected or probable COVID-19, accounting for 33% of total deaths. 4,151 deaths were reported to have occurred within care homes. Assuming that the number of adult care home residents has remained stable since 2017 (based on Care Home Census for Scotland, 35,898 adults receiving care in care homes in March 2017) the number of COVID-19 related deaths of care home residents represents 13.17% of this population.

At present, the authors are not aware of any publicly available data to identify if any care home staff died because of COVID-19.

With respect to social care provided at home, the authors are not aware of any data to identify if those receiving or providing care at home have died because of COVID-19.

Deaths linked to COVID-19 among people with learning disabilities:

A nationwide data linkage study in Scotland comparing all COVID-19 confirmed deaths of people with learning disabilities from 24 January to 15 August 2020 with a 5% sample of adults without learning disabilities reported a Standardised Mortality Ratio (SMR) of 3.20. SMRs were particularly high for people with learning disabilities aged 18-54 (SMR 6.62) and 55-64 (SMR 16.16) (Henderson A. et al. 2021).

References: 

Henderson, A. et al. (2021) COVID-19 infection and outcomes in a population-based cohort of 17,173 adults with intellectual disabilities compared with the general population. BMJ doi: https://doi.org/10.1101/2021.02.08.21250525

Last updated: May 3rd, 2022   Contributors: Chris Hatton  |  Disha Patel  |  Jenni Burton  |  David Bell  |  Elizabeth Lemmon  |  David Henderson  |  

Wales (UK)

The Welsh Government publishes data collated by the Care Inspectorate Wales (CIW) at the Local Authority level of the number of notifications of deaths of adult care home residents by cause and location of death.

As of April 8, 2022, data published by the UK Health Security Agency there have been 10,797 deaths with COVID-19 on the death certificate. As of the same date, the CIW reported 2,163 Covid-19 related deaths (both confirmed and suspected) of care home residents in Wales. Therefore, care home resident deaths account for 25.6% of COVID-19 related deaths in Wales. Of these care home resident deaths, 1,477 (68%) occurred within care homes. There are 24,178 care home residents in Wales. Therefore, the number of COVID-19 related deaths of care home residents represents 8.95% of this population.

Data published by the Office of National Statistics showed that as of March 12, 2021, there had been 7,717 COVID-19 related deaths, with 1,650 of these occurring in care homes (21%). As of the same date, according to CIW data, there had been 1,911 COVID-19 related deaths of care home residents. Therefore, care home residents accounted for 25% of all COVID-19 related deaths in Wales at this point during Wave 2. (Source: https://gov.wales/notifications-care-inspectorate-wales).

A nationwide study in Wales compared certified COVID-19 deaths of people with learning disabilities identified through inpatient services and all Welsh resident COVID-19 deaths, from 1 March to 19 November 2020. This reported a Standardised Mortality Ratio (SMR) of 4.60 for people with learning disabilities compared to all Welsh residents; this was particularly high for people aged under 60 (SMR 12.7) (Watkins, 2021).

References:

Watkins, A. (2021). COVID-19-related deaths in Wales amongst People with Learning Disabilities from 1st March to 19th November 2020.  Improvement Cymru

Last updated: May 3rd, 2022   Contributors: William Byrd  |  Chris Hatton  |  Adelina Comas-Herrera  |  Disha Patel  |  

United States

This covers cumulative deaths in US care homes (nursing facilities, assisted living facilities, and other long-term care facilities) from January 1, 2020, through to March 29, 2021. Information about deaths in care homes comes from three sources: the Center for Medicare and Medicaid Services (CMS), the Kaiser Family Foundation (KFF), and the COVID Tracking Project (CTP) produced by The Atlantic Magazine. As of March 7, 2021, COVID Tracking Project has stopped collecting data. We derived COVID-19 mortality estimates by starting with state-level figures, which were reported directly by each of the sources (Sources: https://data.cms.gov/stories/s/COVID-19-Nursing-Home-Data/bkwz-xpvg/; https://www.kff.org/coronavirus-covid-19/issue-brief/state-covid-19-data-and-policy-actions/#long-term-care-cases-deaths; https://covidtracking.com/). We started with state-level figures to address inconsistencies between the three data systems in the number of recorded COVID-19 deaths. Because the sources draw from different sources, their state totals differ. By starting at the state level, we were able to pick the ‘best’ estimate of care home COVID-19 deaths from each state from among the three data systems. To obtain the ‘best’ estimate of care home COVID-19 deaths, we selected the highest number of deaths recorded for each state from among the three sources. The ‘best’ estimate was a cumulative number of 185,269 COVID-19 related deaths in care homes. Based on this data, care home COVID-19 related deaths account for 34% of all COVID-19 related deaths.

The number of residents in care homes was approximated by adding the residents in nursing facilities from the Center for Medicare and Medicaid Services data and the number of residents in assisted living facilities taken from a report by the National Center for Assisted Living, to get 1,937,345. Therefore, the total number of COVID-19 related deaths in care homes represents 9.56% of this population.

Last updated: August 2nd, 2021

Vietnam

There is no publicly available information that provides a breakdown of COVID-19 deaths by population group. We know that the first cases of COVID-19 deaths in Vietnam were elderly members of the population: the first was a 70-year-old man, and the second was a 63-year-old man.  Although there have been relatively few deaths as a result of the pandemic (although the number spiked in late 2021), it could be assumed that the elderly faced higher risks of fatality as compared to other population age groups (Susilowati et al., 2020).

Last updated: January 3rd, 2022   Contributors: Daisy Pharoah  |  

2.03. Impact of long COVID among people who use Long-Term Care

Overview

What is long COVID?

There is no universally agreed definition of long COVID and different studies use varying definitions. Indeed, the World Health Organisation (WHO) highlights that “over the course of the pandemic, various terminology including long COVID, long-haul COVID or the WHO-recommended post COVID-19 condition have been proposed” (WHO 2021). Still, a globally standardized clinical case definition of this condition remains lacking. In the UK the National Institute for Health and Care Excellence (NICE) uses the following set of definitions to distinguish 3 phases following infection consistent with COVID-19, and to define the term ‘long COVID’:

Acute COVID-19 Signs and symptoms of COVID-19 for up to 4 weeks.

Ongoing symptomatic COVID-19 Signs and symptoms of COVID-19 from 4 weeks up to 12 weeks.

Post-COVID-19 syndrome Signs and symptoms that develop during or after an infection consistent with COVID-19, continue for more than 12 weeks and are not explained by an alternative diagnosis. (NICE, 2022).

The term ‘long COVID’ is commonly used to describe signs and symptoms that continue or develop after acute COVID-19. It includes both ongoing symptomatic COVID-19 (from 4 to 12 weeks) and post-COVID-19 syndrome (12 weeks or more) (NICE, 2022). The majority of studies conducted on long COVID are based on either children or adults under the age of 69 as this is known to be the population with the most reported prevalence of long COVID symptoms.

We are not aware of any work that has been conducted on long COVID with regards to pathways, support or management of symptoms with residents in long term care homes or among people receive care and support from others in the community.

References:

NICE (2002) guidance  https://www.nice.org.uk/guidance/ng188/resources/COVID19-rapid-guideline-managing-the-longterm-effects-of-COVID19-pdf-51035515742 version 1.13 published on 01.02.2022 accessed 08/02/2022

WHO (2021) https://www.who.int/publications/i/item/WHO-2019-nCoV-Post_COVID-19_condition-Clinical_case_definition-2021.1 6/10/21 accessed 08/02/2022

Italy

At present, there is no specific data on the impact of long Covid among people who use Long-Term Care. In July, 2021 the National Health Institute published the national guidelines to assess and manage patients affected by long Covid. The National Government established that people who recovered from severe forms of Covid-19 will have free access to follow up exams for two years (without paying the so-called “ticket” for highly specialized exams).

References:

Istituto Superiore di Sanità (2021). Indicazioni ad interim sui principi di gestione del Long-COVID

Quotidiano Sanità. Long Covid. Il Governo chiarisce in Parlamento modalità di monitoraggio pazienti ed esenzione dal ticket per le visite specialistiche. Published on June, 25th 2021. 

Last updated: February 16th, 2022   Contributors: Eleonora Perobelli  |  Elisabetta Notarnicola  |  

Japan

There is limited data on long-term COVID-19 in Japan as yet but growing interest in it and how it should be managed (Source: https://www.japantimes.co.jp/news/2021/02/07/national/covid-aftereffects-long-lasting/).

Last updated: March 23rd, 2022

United Kingdom

It is reported from a survey conducted by the Office of National Statistics (ONS) that about 1.3 million people in the UK have “long COVID” symptoms lasting more than four weeks after an initial infection (ONS, 2022). Of those, 892,000 (70%) first caught the virus at least 12 weeks ago and 506,000 (40%) at least a year ago (ONS, 2022). Some caution is needed as the estimates relate to self-reported symptoms via a survey rather than a clinical diagnosis although for some respondents this might be the case and included only those living in private households and would not include any individuals living in any type of long-term care home setting.

In the UK, there are now established pathways and centres, some 89, for referring patients who are diagnosed as experiencing long-COVID symptoms (NHS, 2021). However, it is unclear if any care home residents are referred to these services since the majority of services are often located in urban settings linked to existing services and are often not easily accessible for those requiring ongoing support needs, such as a carer present. A plethora of studies has been undertaken on numerous aspects of the pandemic on care homes settings (see, LTCcovid database for details). However, we are not aware of studies directly relating to the management of resident symptoms, referral or access to the rehabilitation pathways or if indeed residents are recognised as having long COVID symptoms. This needs to be addressed. We are aware of current work been undertaken, led by Gordon et al., (2022), that is exploring the current rehabilitation pathways which will be considering the pathways for all patients including those living in care home settings.

References:

Gordon, A. et., al. (2022) Protocol: Long-COVID syndrome: understanding how rurality influences design and development of pathways for delivery of sustainable care. Exploratory study in one geographic region.

Office of National Statistics (ONS) (2022) Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK : 3 February 2022

NHS (2021)  Long COVID: the NHS plan for 2021/22 . Accessed 08/02/2022

NICE (2022). COVID-19 rapid guideline: managing the long-term effects of COVID-19.  Version 1.14 accessed 11/03/2022

Royal College of Nursing (RCN) (2021). Long COVID: what do we know? Retrieved from: https://www.rcn.org.uk/magazines accessed 11/03/2022

Last updated: March 11th, 2022   Contributors: Dr Kathryn Hinsliff-Smith  |  

2.04. Impacts of the pandemic on access to care for people who use Long-Term Care

Overview

This section summarises evidence of the impacts of the pandemic in terms of reduced access to health and social care for people who rely on long-term care.

Evidence from previous waves

Analysis by the OECD of data from the SHARE survey covering the period June to August 2020 found that, among people who regularly receive home care and have ADL or IADL limitations, about 30% reported forgoing or postponing medical treatment, either due to fear of infection or to the services deciding to postpone. Just under 15% of respondents in the sample also reported facing more difficulties in receiving care since the pandemic (Rocard et al., 2021).

For people living in care homes, there is consistent evidence of difficulties accessing health care services (including transfers to hospital when severely ill with COVID-19 and palliative care) during the earlier phases of the COVID-19 pandemic in many countries (see below for examples).

People who need care and support from others and live in the community also experienced reduced access to both health and social care services, some of this may be due to supply constraints, but an important factor was also reluctance to use services due to fear of contracting COVID-19 (see for example Merrilees et al. (2022).

Omicron wave:

The rapidly developing Omicron wave resulted in staffing shortages in long-term care provision in many countries, see for example the situation in England where there were reports of care being rationed.

References:

Merrilees J., Robinson-Teran J. Allawala M., et al. (2022). Responding to the needs of persons living with dementia and their caregivers during the COVID-19 pandemic: Lessons from the Care Ecosystem, Innovation in Aging, 2022;, igac007, https://doi.org/10.1093/geroni/igac007

Rocard E., Sillitti P. and Llena-Nozal A (2021) COVID-19 in long-term care: impact, policy responses and challenges. OECD Health Working Paper No. 131

Australia

Impact on access to good quality care for people living in residential aged care

The pandemic has had implications for the quality of care delivered in the residential facilities with and without outbreaks. The Royal Commission into Aged Care Quality and Safety’s Special report on Covid 19 found several weakness in the Government’s preparation for the pandemic which had impacted the quality of care. These included:

  • – Initial confusion and disagreement over whether residents with COVID-19 were best cared for by ‘hospital in the home’ services or being transferred to an acute hospital.
  • – Fear among staff of working on site with infected residents.
  • – ‘Surge staff’ new staff brought into facilities were ‘unfamiliar with the care needs of residents’
  • – Inadequate infection prevention and controls in place leading to increased infections.
Impact on access to good quality care for people using home-based care

In the early stages of the pandemic, home care providers  reported high level of anxiety among home care clients and isolation stemming from fears around catching COVID-19. This was exacerbated by some difficulties with home care staff accessing PPE in the early stages. Initially some home care clients stopped all or some of their scheduled home care visits. The Australian Government prepared ‘it’s ok to have home care’ information sheets and client demand did pick back up in home care. Many home care providers stopped group services such as bus outings, group exercise classes and social groups. Providers have been given the flexibility to redirect the funds to other services such as ensuring clients have access to meals and groceries, undertaking welfare checks, and undertaking phone/video call social interactions (Charlesworth and Low, 2020).

References

Charlesworth, S & Low, L-F (2020) The Long-Term Care COVID-19 situation in Australia. Report in LTCcovid.org, International Long-Term Care Policy Network, CPEC-LSE, 12 October 2020. https://ltccovid.org/wp-content/uploads/2020/10/Australia-LTC-COVID19-situation-12-October-2020-1-1.pdf

Last updated: January 18th, 2022   Contributors: Sara Charlesworth  |  Lee-Fay Low  |  Wendy Taylor  |  

British Columbia (Canada)

Elective surgeries were postponed during the first wave of COVID-19, but by January 6, 2021, 90% of postponed surgeries have been completed. Health authorities plan to add capacity for additional procedures throughout 2021 and 2022. There is no evidence of discontinuation of care in LTC facilities. However, there is a lack of data published about care in the community and by family providers (Source: https://www.theglobeandmail.com/canada/british-columbia/article-bc-has-completed-90-per-cent-of-elective-surgeries-delayed-because-of/).

Last updated: November 6th, 2021

Finland

Non-urgent annual health checks, appointments, and elective surgeries have been suspended in Finland and many people voluntarily cancelled their appointments. Among the measures launched by the Finnish Government (March 16, 2020) was a plan to increase the capacity of health care and social welfare services in both the public and the private sector. New residents to care homes required testing. However, there have been reported shortcomings. It has also been reported that home care visits have been declined and day care centres have closed.

Last updated: August 4th, 2021

France

Both senate and National Assembly commissions report significant issues around access to services, both in health and social care, for service users in LTCFs and in receipt of domiciliary care. Some reports exist of care home residents being refused access to secondary care facilities at the beginning of the pandemic (Sources: https://www2.assemblee-nationale.fr/static/15/pdf/rapport/i3633.pdf; http://www.senat.fr/rap/r20-199-1/r20-199-11.pdf). The National Assembly report also notes difficult access to medical equipment such as oxygen therapy equipment, and a lack of named GPs within care homes led many care home workers with the responsibility to administer medical and palliative care.

Last updated: January 25th, 2022

Germany

Access to care for people living in the community

A survey among family carers of older people in April/Mai 2020 found that 39% of unpaid carers agreed that they had greater care responsibility as previous support had disappeared. More than 80% reported that day care had completely stopped, 40% reported that other services (e.g. foot care) had stopped or reduced (26%), 26% reported reduced care from the GP. Over 40% reported reduced support from neighbours and 30% from family members and friends. The same survey also showed that there was a slight reduction in available domiciliary LTC and 24-hour care (domestic care or foreign live in carers), but a considerable reduction in available day care programmes (Eggert et al., 2020).

A survey among care providers in April/May 2020, showed that two-thirds of part-residential care settings stopped accepting new residents or closed completely. Among domiciliary carers, less than 20% had provided care for people with a confirmed infection, and 13.4% had clients with suspected cases. Domiciliary care service providers also recorded a change in take up of services (mostly a reduction) among almost 50% of responding providers. Almost half of all domiciliary care services estimate that the provision of support for people with limited uptake of services is at risk or cannot be ensured (Wolf-Ostermann et al., 2020).

Access to care provided by migrant workers

In Germany, many people with care needs who still live in their own homes receive support from Eastern European migrant workers. The border closure around Easter 2020 left many people without their usual support (Lückenbach et al., 2021).

Access to care for people living in care homes

Lockdowns of nursing homes during the first wave led to physical activity programmes for residents being discontinued, as these were often provided by external providers. There were attempts to promote physical activity in-house although staff were not trained to provide it specifically (Frahsa et al., 2020).

References:

Eggert, S., Teubner, C., Budnick, A., Gellert, P. & Kuhlmey, A. (2020) Pflegende Angehörige in der COVID-19-Krise: Ergebnisse einer bundesweiten Befragung. Available at: https://www.zqp.de/wp-content/uploads/ZQP-Analyse-Angeh%C3%B6rigeCOVID19.pdf (Accessed 31 January 2022)

Frahsa A, Altmeier D, John JM, Gropper H, Granz H, Pomiersky R, Haigis D, Eschweiler GW, Nieß AM, Sudeck G and Thiel A (2020) “I Trust in Staff’s Creativity”—The Impact of COVID-19 Lockdowns on Physical Activity Promotion in Nursing Homes Through the Lenses of Organizational Sociology. Front. Sports Act. Living 2:589214. doi: 10.3389/fspor.2020.589214

Lückenbach, C., Klukas, E., Schmidt, P. H. and Gerlinger, T (2021), ‘Governmental response to the COVID-19 pandemic in Long-Term Care residences for older people: preparedness, responses and challenges for the future: Germany’, MC COVID-19 working paper 06/2021. http://dx.doi.org/10.20350/digitalCSIC/13694 Available at: https://drive.google.com/file/d/1-RDnqErydbuGGNXlM8WaFB2oSTRKStTc/view (Accessed 31 January 2022)

Wolf-Ostermann, K, Rothgang, H., Domhoff, D., Friedrich, A.-C., Heinze, F., Preuß, B., Schmidt, A.,  Seibert, K. & Stolle (2020) Zur Situation der Langzeitpflege in Deutschland während der Corona-Pandemie Ergebnisse einer Online-Befragung in Einrichtungen der (teil)stationären und ambulanten Langzeitpflege. Available at: https://media.suub.uni-bremen.de/bitstream/elib/4331/4/Ergebnisbericht%20Coronabefragung%20Uni-Bremen.pdf (Accessed 5 February 2022).

 

Last updated: February 13th, 2022   Contributors: Klara Lorenz-Dant  |  Thomas Fischer  |  Kerstin Hämel  |  

Hong Kong (China)

Non-urgent medical services (follow-up appointments for chronic illnesses, non-urgent surgery) started to be postponed in late January 2020. Family members of older people were invited to pick-up medications from clinics to reduce the risk of infection. There were also new service arrangements put in place for the ‘Elderly Health Centres’ in February 2020.

Day care services in Hong Kong have largely suspended their services but offered reduced services to people with special needs. Other community based services have been closed, but staff continue to provide urgent services and follow-up with members on regular basis to provide ‘social and emotional support’.

Domiciliary services continue. However, providers can operate with greater flexibility and non-essential services were either suspended or scaled back. For example, meal delivery services have moved to disposable containers (Source: https://ltccovid.org/wp-content/uploads/2020/07/Hong-Kong-COVID-19-Long-term-Care-situation_updates-on-8-July-1.pdf).

Last updated: August 2nd, 2021

Israel

Evidence is limited, though there are some indications that adult and adult day centers for at-home care users have closed. According to the National Insurance (NI) website, day centers contacted their service users individually to help them find alternative programs.

report from May 2020, described that special efforts were made to ensure access to a range of health services for people living in residential care settings. This includes management of chronic illnesses, treatment and care for acute medical problems, and the provision of preservative rehabilitation treatments.

Due to the pandemic and a recurring situation in which caregivers were confined to quarantine or the care receiver was in quarantine, it had become more and more frequent that LTC recievers found themselves without a caregiver. In response, the National Insurance (NI)  published on their website a directive saying that recipients of LTC services can choose to receive the allowance in cash (instead of in-kind) if they can’t have a contracted caregiver come in.

Last updated: December 5th, 2021

Italy

Impact of the pandemic on health and long-term care system

More generally in the health system, non-urgent annual health checks, appointments, and elective surgeries have been suspended from March 2020. In 2020, clinic and specialised interventions decreased by 20,3%, with respect to 2019, and non-deferrable exams decreased by 7%.

Impact on access to health care for care home residents

During the initial spread of Coronavirus COVID-19 in Italy, care homes were isolated from the rest of the healthcare system. Hospitals in many of the regions that were under pressure during the peak of COVID-19 (such as Lombardy, Veneto, Emilia-Romagna, Marche and Piemonte), started to reject and deny admission to care homes residents who might have problems related with COVID-19 (since testing was not available for all, the evaluation was based on symptoms). As a result, many of them were cared for in facilities not equipped for high-severity conditions and lacking the specialized health care workers that you can find in other settings such as hospitals. Moreover, access to palliative care has been critical, not only for care homes residents. The associations representing palliative care and intensive care unit doctors (SICP, SIAARTI and FCP) issued a press statement in April 2020 urging for specific protocols for COVID-19 patients.  

In 2021 new rules have been implemented including testing and isolation procedures. The guidelines have been issued by the Ministry of Health through the Italian Institute for Health (ISS).

Impact on availability of care and support for people living in the community

Italian data from a survey on the Impact of the Covid-19 outbreak on informal carers across Europe show that 44% of carers experienced a decrease in health and/or social care services during the outbreak (Eurocarers/IRCCs, 2021).

A qualitative study found that although alternative forms of support and interaction with services were introduced, they did not compenssate for the loss of in person support experienced by people with dementia and their family carers (Chirico et al., 2022).

References:

Chirico, I.Ottoboni, G.Giebel, C.Pappadà, A.Valente, M.Degli Esposti, V.Gabbay, M., & Chattat, R. (2022). COVID-19 and community-based care services: Experiences of people living with dementia and their informal carers in ItalyHealth & Social Care in the Community001– 10https://doi.org/10.1111/hsc.13758

Eurocarers/IRCCS-INRCA (2021). Impact of the COVID-19 outbreak on informal carers across Europe – Final report. Brussels/Ancona.

Istat (2021). Rapporto Annuale, anno 2020.

Rapporto ISS COVID-19, n. 6/2021, Assistenza sociosanitaria residenziale agli anziani non autosufficienti: profili bioetici e biogiuridici

Last updated: February 22nd, 2022   Contributors: Eleonora Perobelli  |  Elisabetta Notarnicola  |  

Japan

Applications for LTC (both community and facility based) through the national insurance scheme decreased by more than 20% across many cities compared to the previous years due to concerns regarding infection from care assessment workers (Source: https://ageingasia.org/wp-content/uploads/2020/12/COVID_LTC_Report-Final-20-November-2020.pdf). At least 909 LTC services (858 are day-care and 51 are home-visit services) have temporarily suspended operations as of April 20, 2020, due to the risk of infection (Source: https://onlinelibrary.wiley.com/doi/full/10.1002/jgf2.366). It is not clear if the impact of those closures has been assessed. It is also not clear how home care has been affected.

Last updated: September 7th, 2021

Netherlands

Nursing homes (usually running waiting lists) now have empty beds because people are reluctant to move into a home, in response to the visiting ban, while other nursing homes had to implement temporary bans on new admissions (Sources: https://drive.google.com/file/d/1Ji-iDCjC-8EbBpV0dW_xlz780uvU7F–/view; https://ltccovid.org/wp-content/uploads/2020/11/COVID-19-Long-Term-Care-situation-in-the-Netherlands-_-the-second-wave-25-November-2020-2.pdf). However, questions have been raised about the access to health care for Covid-19 patients in nursing homes (Source: https://ltccovid.org/wp-content/uploads/2020/11/COVID-19-Long-Term-Care-situation-in-the-Netherlands-_-the-second-wave-25-November-2020-2.pdf).

During the first wave, people receiving care in the community who also had family support experienced a reduction or suspension of services. This approach was changed in the second wave, where home care could only be reduced following a consultation with the person with care needs. However, there were instances, such as when there was a lack of staff when services were temporarily reduced.

Efforts have also been made to continue day care, by moving services, where possible, online. Technological interventions have received increased government subsidies. During the second wave day care activities were largely not reduced, but a number of difficulties around ensuring the safety of people with LTC needs and staff were identified (Source: https://ltccovid.org/wp-content/uploads/2020/11/COVID-19-Long-Term-Care-situation-in-the-Netherlands-_-the-second-wave-25-November-2020-2.pdf).

Last updated: August 2nd, 2021

Poland

Community centres (centres for people with special needs (srodowiskowe domy samopomocy) and some day-care centres in social sector have been temporarily closed. Restrictions were imposed on admission to social assistance homes to safely admit new residents (source: EU: Long-term care report). Equally, some municipalities during the pandemic have issued recommendations that home-based care services should be provided only where it is most necessary, moreover,  eligibility assessments for home-based care were limited during pandemic for a number of reasons (E.g.  social workers carrying out eligibility assessments/ interviews preceding the granting of care services took place less frequently in order to minimise social contact, but also because of the numerous additional challenges that faced municipalities workers during the pandemic. Moreover, some service recipients were unwilling to receive home-based care due to fear of catching infections from care workers, especially that the latter often travel via public transport between different care recipients  (source: Opieka dlugoterminowa w Polsce raport). 

EU data from also suggest that about 28% of people over the age of 55 in Poland had the unmet needs for medical treatment during the pandemic, which was above the EU 27 average of 20% (sources: Ageing policies – access to services in different EU Member States; Jakosc zycia osób starszych w Polsce).

Overall, reports indicate lack of access to medical care among older people in Poland during the pandemic, as well as decreased physical activity among older persons (source:  Jakosc zycia osób starszych w Polsce).

Last updated: January 6th, 2022   Contributors: Joanna Marczak  |  Agnieszka Sowa-Kofta  |  

Republic of Korea

In terms of wider impacts, the National Health Insurance Services has temporarily stopped providing the eligibility test for potential beneficiaries, since it requires in-person interviews and assessments of older people and families. ‘Certificate tests’ for care staff have been paused. A report from May 2020, further described that community care for older people and people with disabilities were closed in late February 2020. The Ministry has requested staff working in community-care centres to prepare for safe reopening and to support people with care and support needs with the delivery of meals, welfare checks, and supportive activities. The government also provided a supplementary budget to temporarily support economically disadvantaged groups (Source: https://ltccovid.org/wp-content/uploads/2020/05/The-Long-Term-Care-COVID19-situation-in-South-Korea-7-May-2020.pdf).

Last updated: August 2nd, 2021

Spain

Access to health care for people living in care homes

In Spain, in the early part of the pandemic, there were widespread difficulties for care home residents to access health care services, including at primary care level. There were many instances of hospital admissions being denied on the basis of where a person lived (a care home) or their type of disability (for example dementia), without consideration of the individual’s situation and potential to benefit from treatment. This generated great controversy and concern about human rights violations (see for example Del Pino et al., 2020 and Zalakain et al., 2020).

Access to long-term care in the community

A report from May 2020 outlines that day care centres were closed to reduce the risk of infection. In addition, many ‘light’ home care services were cancelled by local and municipal authorities. Recommendations issued in March 2020 by the Ministry of Social Rights envisaged that social services departments would have to ensure continuity of services where private providers suspended home care services. The recommendations also emphasised a continuation of services for people with personal care needs and people requiring support with other activities of daily living (e.g. shopping, accompanying people outside the house). The guidelines also recommended a greater combination of services than usually permitted, to reduce administrative barriers when taking on new clients, and encouraged service providers to alert social services departments if cases of people with particular needs were identified.

References:

Del Pino E., Moreno-Fuentes F.J. , Cruz-Marti?nez G., et al. (2020) Informe Gestio?n Institucional y Organizativa de las Residencias de Personas Mayores y COVID-19: dificultades y aprendizajes. Instituto de Poli?ticas y Bienes Pu?blicos (IPP-CSIC) Madrid. http://dx.doi.org/10.20350/digitalCSIC/12636

Zalakain, J. Davey, V. & Sua?rez-Gonza?lez, A. The impact of COVID-19 on users of Long-Term Care services in Spain. LTCcovid, International Long-Term Care Policy Network, CPEC-LSE, 28 May 2020. https://ltccovid.org/wp-content/uploads/2020/10/LTCcovid-Spain-country-report-28-May-1.pdf 

Last updated: January 14th, 2022

Sweden

In some regions, recommendations/guidelines were issued that people in care homes who fell ill with suspected or confirmed COVID-19, should primarily be cared for in the care home and not referred to hospital, which led to inadequate (medical) care provided to these patients. Overall, online physician consultations were reported to have led to inadequate medical care in residential care settings.

Home care services have decreased during the pandemic (during the spring 2020 in Sweden, application for homecare declined by 45 percent). Some municipalities have paused admittances to care home, to prevent further spread of infection.

(Sources: https://aldrecentrum.se/Governmental-response-to-the-COVID-19-pandemic-in-Long-Term-Care-residences.pdfhttps://coronakommissionen.com/wp-content/uploads/2020/12/summary.pdf; https://www.sciencedirect.com/science/article/abs/pii/S2211883720300812; https://ltccovid.org/2020/12/16/the-swedish-corona-commission-on-care-of-older-people-during-the-pandemic/).

Last updated: November 30th, 2021

Thailand

A study in Thailand investigated how the COVID-19 pandemic has affected 200 older adults without dementia living at two government long-term care centres during August 2020 to October 2020. Residents reported impact on health due to having difficulties in seeing doctors and one third of residents said that their medication was insufficient.

References:

Srifuengfung, M., Thana-Udom, K., Ratta-Apha, W., Chulakadabba, S., Sanguanpanich, N., & Viravan, N. (2021). Impact of the COVID-19 pandemic on older adults living in long-term care centers in Thailand, and risk factors for post-traumatic stress, depression, and anxiety. Journal of Affective Disorders, 295, 353–365. https://doi.org/https://dx.doi.org/10.1016/j.jad.2021.08.044

Last updated: January 14th, 2022   Contributors: Adelina Comas-Herrera  |  

United Kingdom

Impact on access to health and social care services for adults with learning disabilities

UK-wide interviews with approximately 500 adults with learning disabilities and surveys with approximately 300 family carers and support workers of adults with learning disabilities who could not take part in an interview at three time points during the pandemic have reported that access to a wide wide range of health services (including primary care, more specialist therapists, and annual health checks) significantly reduced from before the pandemic to the lockdown in the winter of 2020. Access has improved since then up to the summer of 2021, but not to pre-pandemic levels, with more consultations being conducted by phone rather than face to face.

The picture is similar concerning access to a wide range of social care services, including day services, community activities and short breaks, with the exception of support at home which has continued at consistent levels through the COVID-19 pandemic. Reduced access to many health and social care services was evident for a greater proportion of adults with learning disabilities with greater needs, particularly adults with profound and multiple learning disabilities.

Last updated: March 8th, 2022   Contributors: Chris Hatton  |  

England (UK)

Omicron wave: workforce shortages

The rapid spread of the Omicron variant has had a drastic impact on the ability of services to continue to operate due to very high rates of staff sickness. A survey of members of the National Care Forum (the largest body representing not-for-profit care providers) released on the 13th January 2022 found that 66% of homecare providers responding are having to refuse new requests for home care, 43% of providers of care homes are closing to new admissions and 21% of home care providers are handing back existing care packages as they are unable to fulfil them. The providers reported an 18% vacancy rate and 14% absences as a result of Omicron.

Also on the 13th January 2022, the Association of Directors of Adult Services reported that 49 out of 94 councils that answered a questionnaire reported taking measures to prioritise care to support the most basic tasks only (eating, drinking and going to the toilet, but not help with tasks such as getting out of bed) and having to leave people with learning disabilities, dementia or mental illness alone for longer than usual. A survey of members of the National Care Forum (the largest body representing not-for-profit care providers) found that 66% of homecare providers responding are having to refuse new requests for home care, 43% of providers of care homes are closing to new admissions and 21% of home care providers are handing back existing care packages as they are unable to fulfil them.

Previous waves of the pandemic:

In the initial part of the pandemic carers reported delays in health treatment for the person they care for (57%) and for themselves (38%). More than half of carers (65%) in a Carers UK survey carried out in September 2020 reported to have postponed attending health care services for their own health needs. Reduced access to health care and social services for the person they support was also reported by carers of people with dementia (90% of 795 respondents)(Source: Alzheimers.org).

Many community–based care services, such as day care, were interrupted as a result of the COVID-19 pandemic. Guidance on safe delivery of day care has been published by the Social Care Excellence Institute on the July 10, 2020.

It is likely that there have been reductions in the use of domiciliary care services, such as home care, as a result of people fearing contagion through contact with staff, and as a result of staff shortages due to their own need to self-isolate or shield. Lack of access to PPE and testing for home care providers may have exacerbated this problem. There is no data yet on the extent to which services have been reduced or the degree to which this has affected the people who rely on those services and their family and other unpaid carers, although a national survey by the Association of Directors of Adult Services reported substantial increases in social care need arising from the unavailability of services, hospital discharge, carer breakdown, and concerns about abuse and safeguarding.

Impact on access to health care for people with dementia

In the earlier part of the pandemic there were reports of people living with dementia who had COVID being refused hospital treatment based on their dementia diagnosis and not their ability to benefit from treatment, and of people with dementia living in care homes being pressured into signing “Do Not Attempt Ressusciation” (DNAR), prompting the Alzheimer’s Society and 4 leading charities to send an open letter to the health secretary (Suarez-Gonzalez et al., 2020).

Impact on access to health and social care services for adults with intellectual disabilities

UK-wide interviews with approximately 500 adults with intellectual disabilities and surveys with approximately 300 family carers and support workers of adults with intellectual disabilities who could not take part in an interview, at three time points during the pandemic, have reported that access to a wide range of health services (including primary care, more specialist therapists, and annual health checks) significantly reduced from before the pandemic to the lockdown in the winter of 2020. Access has improved since then up to the summer of 2021, but not to pre-pandemic levels, with more consultations being conducted by phone rather than face to face.

The picture is similar concerning access to a wide range of social care services, including day services, community activities and short breaks, with the exception of support at home which has continued at consistent levels through the COVID-19 pandemic. Reduced access to many health and social care services was evident for a greater proportion of adults with intellectual disabilities with greater needs, particularly adults with profound and multiple intellectual disabilities (Flynn et al., 2021).

In England, national statistics on local-authority funded social care reported that 1,500 fewer adults with learning disabilities were receiving long-term social care at the end of March 2021 compared to the end of March 2020, reversing a long-term trend of increasing numbers of adults with learning disabilities receiving long-term social care.

References:

Flynn, S., Hayden, N., Clarke, L., Caton, S., Hatton, C., Hastings, R. P., Abbott, D., Beyer, S., Bradshaw, J., Gillooly, A., Gore, N., Heslop, P., Jahoda, A., Maguire, R., Marriott, A., Oloidi, E., Paris, A., Mulhall, P., Scior, K., Taggart, L., & Todd, S. (2021). Coronavirus and people with learning disabilities study Wave 3 Results: September 2021 (Full Report). Coventry, UK: University of Warwick. ISBN: 978-1-871501-37-7

Suarez-Gonzalez A., Livingston G., Comas-Herrera A. (2020) Report: The impact of the COVID-19 pandemic on people living with dementia in UK, 3rd May 2020. https://ltccovid.org/2020/05/03/report-the-impact-of-the-covid-19-pandemic-on-people-living-with-dementia-in-uk/ 

Last updated: March 6th, 2022   Contributors: William Byrd  |  Chris Hatton  |  Adelina Comas-Herrera  |  

Northern Ireland (UK)

Impact on access to health and social care services for adults with intellectual disabilities

UK-wide interviews with approximately 500 adults with intellectual disabilities and surveys with approximately 300 family carers and support workers of adults with intellectual disabilities who could not take part in an interview, at three time points during the pandemic, have reported that access to a wide range of health services (including primary care, more specialist therapists, and annual health checks) significantly reduced from before the pandemic to the lockdown in the winter of 2020. Access has improved since then up to the summer of 2021, but not to pre-pandemic levels, with more consultations being conducted by phone rather than face to face.

The picture is similar concerning access to a wide range of social care services, including day services, community activities and short breaks, with the exception of support at home which has continued at consistent levels through the COVID-19 pandemic. Reduced access to many health and social care services was evident for a greater proportion of adults with intellectual disabilities with greater needs, particularly adults with profound and multiple intellectual disabilities.

 

Last updated: March 8th, 2022   Contributors: Chris Hatton  |  

Scotland (UK)

In August 2020, the Health and Sport Committee of the Scottish Parliament ran a survey to collect views from people who provide, or receive, care and support at home. The survey covered the period 10 August 2020 to 7 September 2020. Over half of respondents stated that their care at home support either stopped completely (33%) or reduced (21%). Respondents reported that in many cases, family members had to step in to provide care. The closure of day centres and respite activities was reported as impacting those receiving care at home. Of those staff who responded to the survey, 61% reported that home care packages changed during the pandemic. Reasons reported included reduced provision of services, suspension and even cancellation of services (The Scottish Parliament, 2020).

Impact on access to health and social care services for adults with intellectual disabilities

UK-wide interviews with approximately 500 adults with intellectual disabilities and surveys with approximately 300 family carers and support workers of adults with intellectual disabilities who could not take part in an interview, at three time points during the pandemic, have reported that access to a wide range of health services (including primary care, more specialist therapists, and annual health checks) significantly reduced from before the pandemic to the lockdown in the winter of 2020. Access has improved since then up to the summer of 2021, but not to pre-pandemic levels, with more consultations being conducted by phone rather than face to face.

The picture is similar concerning access to a wide range of social care services, including day services, community activities and short breaks, with the exception of support at home which has continued at consistent levels through the COVID-19 pandemic. Reduced access to many health and social care services was evident for a greater proportion of adults with intellectual disabilities with greater needs, particularly adults with profound and multiple intellectual disabilities.

References:

The Scottish Parliament, (2020). How has Covid-19 impacted on care and support at home in Scotland?

Last updated: March 8th, 2022   Contributors: Chris Hatton  |  Jenni Burton  |  David Bell  |  Elizabeth Lemmon  |  David Henderson  |  

Wales (UK)

Impact on access to health and social care services for adults with intellectual disabilities

UK-wide interviews with approximately 500 adults with intellectual disabilities and surveys with approximately 300 family carers and support workers of adults with intellectual disabilities who could not take part in an interview, at three time points during the pandemic, have reported that access to a wide range of health services (including primary care, more specialist therapists, and annual health checks) significantly reduced from before the pandemic to the lockdown in the winter of 2020. Access has improved since then up to the summer of 2021, but not to pre-pandemic levels, with more consultations being conducted by phone rather than face to face.

The picture is similar concerning access to a wide range of social care services, including day services, community activities and short breaks, with the exception of support at home which has continued at consistent levels through the COVID-19 pandemic. Reduced access to many health and social care services was evident for a greater proportion of adults with intellectual disabilities with greater needs, particularly adults with profound and multiple intellectual disabilities.

Last updated: March 8th, 2022   Contributors: Chris Hatton  |  

United States

Reductions in access to care for people living in the community

Qualitative interviews with professionals supporting people living with dementia and their family carers in four US states showed that, during the shelter-in-place periods in March to May 2020, fear of contracting COVID-19 led to reluctance in using medical care and respite care services. Concerns about restrictions to visiting and inability to provide care also led to reluctance to consider moving to care homes. When carers did seek services, they found that these were less available (or in the case of day care services, not at all). Carers also reported shortages of key supplies, including incontinence products and groceries. However, this study also showed how existing staff in Care Ecosystem programmes adapted their ways of working to provide additional support, including helping family carers learn how to use technology, practical in-home activity ideas, and help them navigate access to information and resources (Merrilees et al., 2022).

References:

Merrilees J., Robinson-Teran J. Allawala M., et al. (2022). Responding to the needs of persons living with dementia and their caregivers during the COVID-19 pandemic: Lessons from the Care Ecosystem, Innovation in Aging, 2022;, igac007, https://doi.org/10.1093/geroni/igac007

Last updated: March 3rd, 2022   Contributors: Adelina Comas-Herrera  |  

Vietnam

There is no information available on the impacts of the pandemic on access to health and social care services for those who use formal LTC. However, there are reports of elderly patients with various health conditions being reluctant to visit hospitals when they needed to due to fear of visiting crowded places. Across Vietnam, rates of inpatient care and hospital visits declined by around 30% during the pandemic (original source: DoH HCMC). This meant that healthcare work has often been done by the individual themselves or family members; neither of whom were likely to have the appropriate training or experience. As a result, there were reports of patients suffering from preventable conditions such as strokes and kidney and respiratory failure as a result of not going into hospital (source: Aging Asia report).

Last updated: January 3rd, 2022   Contributors: Daisy Pharoah  |  

2.05. Impacts of the pandemic on the health and wellbeing of people who use Long-Term Care

Overview

There is great concern about the detrimental impacts of the pandemic and the measures adopted to prevent COVID-19 infections on people who use long-term care services, particularly those in care homes. This section summarises the evidence we have gathered so far in the studies described in each of the country sections below.

People living in care homes
Types of evidence:

So far we have found some evidence of detrimental impacts for people living in the community, particularly from the UK, see below). Most of the evidence so far is on the impacts on people living in care homes and some evidence for people living in retirement communities.

While there are only a few countries where data on the well-being, mental and physical health were available from before the pandemic, researchers have used both qualitative and quantitative approaches to ask about perceived changes.

With regards comparable data from before the pandemic, this tends to be available in countries that have information systems to collect data regularly, for example the interRAI Long-Term Care Facilities (interRAI LTCF,  a standardised vehicle to record clinical observations that is used in LTC homes more than 30 countries). Papers that have estimated the impacts of the pandemic on care home residents comparing with data from before the pandemic include McArthur et al., 2021, Pereiro et al, 2021, Levere et al., 2021).

Some quantitative studies used questions asking about perception of change, in an effort to address the lack of baseline data to compare against (see for example El Haj et al., 2020).

Most of evidence available is from qualitative studies and, due to the restrictions in place during the pandemic, it is often obtained through proxy reports from family members of staff (see for example, Paananen et al, 2021; Avidor and Ayalon 2022; Giebel et al., 2022, Smaling et al., 2022). Some studies did interview residents (see for example Ickert et al., 2021)

Well-being, mental and physical health outcomes observed

Many studies found that increases in depression, anxiety, and stress were observed in care home residents during the pandemic (Brydon et al., 2021; Guerrero et al., 2021; Levere et al., 2021; Pereiro et al., 2021). Some studies found that this was more pronounced in residents with Alzheimer’s and Dementia (El Haj et al., 2021; Leontjevas et al., 2021; Smaling et al., 2022).

However, there were some studies that found that, despite long periods of confinement, residents had no or mild symptoms of depression, anxiety, and stress and were satisfied with their lives (Arpacioglu et al., 2021; Seethaler et al., 2021; Srifuengfung et al., 2021). A study exploring the views of care home practitioners in the Netherlands about the relationship between changes in stimulation due to the pandemic restrictions and behavioural and psychological symptoms of different groups of residents suggests that residents with advanced dementia and psychotic or agitation symptoms had benefitted from the reduction in unplanned stimuli (such as noise in corridors) during the pandemic, whereas the general reduction in stimuli had affected negatively people without dementia and with depressive and apathetic behaviour (Knippenberg et al., 2022).

In terms physical impacts, a few studies described unintentional weight loss among care home residents (Levere et al. 2021 and Ickert et al., 2021,) general deterioration of physical abilities (Paananen et all, 2021 and Avidor and Ayalon 2021) and increase in episodes of incontinence (Levere et al., 2021). A qualitative study in England of people living with dementia (not in care homes) observed a self-reinforcing vicious circle of deconditioning, highlighting the importance of support to maintain physical activity (Di Lorito et al., 2021)

Some studies reported acceleration in cognitive function (Levere et al., 2021), but not all, Pereiro et al. in a care home in Galicia, Spain, found no change from the expected cognitive decline trajectory that would be expected based on previous data (Pereiro et al., 2021).

A study in Israel interviewed residents in continuing care retirement communities carried out between April and June 2020 found that most of the residents reported substantial reductions in their mental wellbeing, including high levels of anxiety, depression, anger and despair (Ayalon and Avidor, 2021).

Attribution of impacts to particular measures:

It is difficult to assign the impacts observed to particular measures (isolation in confined spaces, lack of family contact, etc), but there is evidence, from before the pandemic, that, in addition to family life being a fundamental human right, visitors provide essential emotional, physical, and psychosocial support to care home residents (Gaugler, 2005; Bethell et al, 2020; Low et al, 2021).

Additionally, staffing shortages, reduced input from some care professionals, and more demands on the time spent on infection prevention and control (IPC) measures are expected to have resulted in a decrease in the amount and quality of care experienced by service users. The mental health of staff was also severely affected (see section 2.08 on impacts of the pandemic on the LTC workforce, and also Brydon et al., 2021).

At least two studies found that detrimental mental health impacts were partially or fully explained by differences in the amount of social isolation experienced (Arpacioglu et al., 2021, Pereiro et al., 2021).

A study focused on changes in behaviour considered challenging among care home residents who have dementia, as reported by nursing home practitioners (Leontjevas et al., 2021), found:

  • – Staff attributed both increased and decreases in these behaviours to the ban in visits in place at the time
  • – The most negative effects were attributed to residents not being allowed to go outside, being made to stay in their rooms and changes in organised activities
  • – People with mild to moderate dementia having been most affected.

 

In another study (Brydon et al, 2021) staff identified the following as potential reasons for high rates of poor mental health for residents:

  • -Visiting and outing restrictions
  • – Media exposure to COVID-19 outbreaks and concern for the safety of family and friends.

Residents in care homes in Alberta (Canada) reported missing recreational activities, loss or recreational activities, lack of services, such as physiotherapy, and the feeling that they were most affected by restrictive measures than the rest of the population (Ickert et al., 2021).

As described above, Knippenberg et al (2022) found that different groups of residents had different responses to the reduction in stimuli produced by the pandemic restrictions, recommending more targeted approaches to the different needs for stimulation of different groups or residents (for example those with severe dementia compared to those without dementia and with depressive symptoms).

People using care in the community

A qualitative study in Italy found that carers of people with dementia reported accelerated decline in cognitive and functional abilities and increased behavioural and psychological symptoms (Chirico et al., 2022).

References:

Arpacioglu S, Yalçin M, Türkmenoglu F, Ünübol B, Çelebi Çakiroglu O. Mental health and factors related to life satisfaction in nursing home and community-dwelling older adults during COVID-19 pandemic in Turkey. Psychogeriatrics. 2021 Nov;21(6):881-891. doi: 10.1111/psyg.12762.

Avidor, S. and Ayalon, L. (2022). “I Didn’t Meet My Mother; I Saw My Mother”: The Challenges Facing Long-Term Care Residents and Their Families in the Age of COVID-19. Journal of Applied Gerontology41(1), 22–29. https://doi.org/10.1177/07334648211037099

Ayalon L. and Avidor S., ‘We have become prisoners of our own age’: from a continuing care retirement community to a total institution in the midst of the COVID-19 outbreak, Age and Ageing, Volume 50, Issue 3, May 2021, Pages 664–667, https://doi.org/10.1093/ageing/afab013

Bethell J, Aelick K, Babineau J, et al. Social connection in long-term care homes: A scoping review of published research on the mental health impacts and potential strategies during COVID-19. J Am Med Dir Assoc 2020; https://doi.org/10.1016/j.jamda.2020.11.025

Brydon A, Bhar S, Doyle C, Batchelor F, Lovelock H, Almond H, Mitchell L, Nedeljkovic M, Savvas S, Wuthrich V. National Survey on the Impact of COVID-19 on the Mental Health of Australian Residential Aged Care Residents and Staff. Clin Gerontol. 2021 Oct 11:1-13. doi: 10.1080/07317115.2021.1985671.

Chirico, I.Ottoboni, G.Giebel, C.Pappadà, A.Valente, M.Degli Esposti, V.Gabbay, M., & Chattat, R. (2022). COVID-19 and community-based care services: Experiences of people living with dementia and their informal carers in ItalyHealth & Social Care in the Community001– 10https://doi.org/10.1111/hsc.13758

Di Lorito, C., Masud, T., Gladman, J. et al. (2021) Deconditioning in people living with dementia during the COVID-19 pandemic: qualitative study from the Promoting Activity, Independence and Stability in Early Dementia (PrAISED) process evaluation. BMC Geriatr 21, 529. https://doi.org/10.1186/s12877-021-02451-z

El Haj M, Altintas E, Chapelet G, Kapogiannis D, Gallouj K. High depression and anxiety in people with Alzheimer’s disease living in retirement homes during the covid-19 crisis. Psychiatry Res. 2020 Sep;291:113294. doi: 10.1016/j.psychres.2020.113294

Gaugler, J. E. (2005). Family involvement in residential long-term care: A synthesis and critical review. Aging & Mental Health, 9(2), 105-118. doi:10.1080/13607860412331310245

Giebel CHanna, K.Marlow, P.Cannon, J.Tetlow, H.Shenton, J.Faulkner, T.Rajagopal, M.Mason, S. & Gabbay, M. (2022). Guilt, tears and burnout—Impact of UK care home restrictions on the mental well-being of staff, families and residentsJournal of Advanced Nursing001– 12https://doi.org/10.1111/jan.15181

Guerrero Z, Aliev AA, Kondrátová L, Jozefiaková B, Nesázalová N, Sa?áková JG, Winkler P. Mental Health and Quality & Safety of Care in Czech Residential Institutions during the COVID-19 Pandemic: A Mixed-Methods Study. Psychiatr Q. 2021 Dec;92(4):1393-1411. doi: 10.1007/s11126-021-09912-z.

Ickert C., Stefaniuk R., Leask B.A. (2021) Experiences of long-term care and supportive living residents and families during the COVID-19 pandemic: “It’s a lot different for us than it is for the average Joe”. Geriatric Nursing 42(6): 1547-1555 https://doi.org/10.1016/j.gerinurse.2021.10.012

Knippenberg, I.A.H., Leontjevas, R., Nijsten, J.M.H. et al. Stimuli changes and challenging behavior in nursing homes during the COVID-19 pandemic. BMC Geriatr 22, 142 (2022). https://doi.org/10.1186/s12877-022-02824-y

Leontjevas R., Knippenberg I.A.H., Smalbrugge M., et al (2021) Challenging behavior of nursing home residents during COVID-19 measures in the Netherlands, Aging & Mental Health, 25:7, 1314-1319, DOI: 10.1080/13607863.2020.1857695

Levere M., Rowan P., Wysocki A. (2021) The adverse effect of the COVID-19 pandemic on nursing home resident well-being. J Am Med Dir Assoc 2021; https://doi.org/10.1016/j.jamda.2021.03.010

Low L-F, Hinsliff-Smith K, Sinha S, Stall N, Verbeek H, Siette J, Dow B, Backhaus R, Devi R, Spilsbury K, Brown J, Griffiths A, Bergman C, Comas- Herrera A (2021) Safe visiting at care homes during COVID-19: A review of international guidelines and emerging practices during the COVID-19 pandemic. LTCcovid.org, International Long-Term Care Policy Network, CPEC-LSE, 19th January 2021.

McArthur C., Saari M., Heckman G.A. et al. (2021) Evaluating the effect of COVID-19 pandemic lockdown on Long-Term Care residents mental health: a data-driven approach in New Brunswick, JAMDA; 22(1): 187–192. doi: 10.1016/j.jamda.2020.10.028

Nair P, Gill JS, Sulaiman AH, Koh OH, Francis B. Mental Health Correlates Among Older Persons Residing in Malaysian Nursing Homes During the COVID-19 Pandemic. Asia Pac J Public Health. 2021 Nov;33(8):940-944. https://doi.org/10.1177/10105395211032094

Paananen J, Rannikko J, Harju M, Pirhonen J (2021) The impact of Covid-19-related distancing on the well-being of nursing home residents and their family members: a qualitative study. International Journal of Nursing Studies Advances, 3. https://doi.org/10.1016/j.ijnsa.2021.100031.

Pereiro, A.X.; Dosil-Díaz, C.; Mouriz-Corbelle, R.; Pereira-Rodríguez, S.; Nieto-Vieites, A.; Pinazo-Hernandis, S.; Pinazo-Clapés, C.; Facal, D. (2021) Impact of the COVID-19 Lockdown on a Long-Term Care Facility: The Role of Social Contact. Brain Sci. 11, 986. https://doi.org/10.3390/brainsci11080986

Seethaler, M., Just, S., Stotzner, P., Bermpohl, F., & Brandl, E. J. (2021). Psychosocial Impact of COVID-19 Pandemic in Elderly Psychiatric Patients: a Longitudinal Study. The Psychiatric Quarterly. https://doi.org/https://dx.doi.org/10.1007/s11126-021-09917-8

Smaling HJA, Tilburgs B, Achterberg WP, Visser M. The Impact of Social Distancing Due to the COVID-19 Pandemic on People with Dementia, Family Carers and Healthcare Professionals: A Qualitative Study. International Journal of Environmental Research and Public Health. 2022; 19(1):519. https://doi.org/10.3390/ijerph19010519

Srifuengfung, M., Thana-Udom, K., Ratta-Apha, W., Chulakadabba, S., Sanguanpanich, N., & Viravan, N. (2021). Impact of the COVID-19 pandemic on older adults living in long-term care centers in Thailand, and risk factohttps://doi.org/https:/dx.doi.org/10.1016/j.jad.2021.08.044rs for post-traumatic stress, depression, and anxiety. Journal of Affective Disorders, 295, 353–365. https://dx.doi.org/10.1016/j.jad.2021.08.044

Argentina

People living with dementia

Another study reported an increase in anxiety, insomnia, depression, worsening gait disturbance, and use of psychotropics to control behavioural symptoms in people living with dementia in the community (Source: https://www.frontiersin.org/articles/10.3389/fpsyt.2020.00866/full).

Last updated: January 2nd, 2022

Australia

Levels of depression, anxiety, confusion, loneliness, and suicide risk among aged care home residents have increased since March 2020. Some of this can be attributed to missing family, changed routines, concern about catching the virus, or fear of being isolated in their rooms. In some cases, people living in aged care homes are no longer doing the incidental exercise they were previously doing (source: Aged Care and COVID-19 report). Dementia Australia reported that people living with dementia and the people that care for them, especially family carers, have reported adverse effects of COVID-19 on their physical, cognitive, social, and mental wellbeing.

A national online survey carried out in September and October of 2020 asked 288 senior staff working in residential aged care homes about the impact of COVID-19 on the mental health of residents and staff. The study aimed to identify the perceived impact of the pandemic on mental health, the restrictions and stressors that staff identified as affecting mental health and the views of staff about programmes and resources to support mental health. The study used mixed methods, using qualitative narratives to complement the quantitative findings. It found that the mental health of both residents and staff has been severely affected, with high rates of residents reported to be experiencing poor mental health, increased loneliness, stress and anxiety, increased behaviours considered challenging, and increased thoughts about death and suicide. In terms of the reasons identified for these high rates of poor mental health for residents, staff suggested visiting and outing restrictions, media exposure to COVID-19 outbreaks and concern for the safety of family and friends. Staff identified training in supporting the mental health of residents, on-site and tele-health counselling and having technical support for video conferencing (Brydon et al., 2021).

References:

Brydon A, Bhar S, Doyle C, Batchelor F, Lovelock H, Almond H, Mitchell L, Nedeljkovic M, Savvas S, Wuthrich V. National Survey on the Impact of COVID-19 on the Mental Health of Australian Residential Aged Care Residents and Staff. Clin Gerontol. 2021 Oct 11:1-13. doi: 10.1080/07317115.2021.1985671.

Last updated: January 12th, 2022

Austria

A qualitative study by Pfabigan et al., (2022) indicated that older people with light and moderate care needs living alone in Austria had to adjust their activities of daily living as well as other activities such as practising faith or pastimes. However, it was in particular their autonomy that had to be negotiated e.g. those who used to do shopping on their own were no longer able to do so, and had to rely on others such as neighbours. Overall the study found that the management of everyday life and support was challenging for this group of people.

References:

Pfabigan, J., Wosko, P., Pichler, B., Reitinger, E. and Pleschberger, S. (2022) Under reconstruction: the impact of COVID-19 policies on the lives and support networks of older people living alone, 6(1-2): 211–228, International Journal of Care and Caring, DOI: 10.1332/239788221X16308602886127

Last updated: March 4th, 2022

Brazil

A published article discusses the adoption of restrictive and protective measures to prevent the spread of the virus, aiming to keep older people healthy and mitigate the effects of the pandemic. The conclusion is that the pandemic has increased the many vulnerabilities to which institutionalised older people were already exposed, adding vulnerability to a new disease, such as COVID-19, due to its high lethality and comorbidity, aggravated by the precariousness of long-term Brazilian institutions due to the negligence of public authorities, civil society, the management of the institutions, and the families of the patients.

Reference:

de Araújo, P. O., Freitas, M. Y. G. S., de Santana Carvalho, E. S., Peixoto, T. M., Servo, M. L. S., da Silva Santana, L., … Moura, J. C. V. (2021). Institutionalized elderly: vulnerabilities and strategies to cope with Covid-19 in Brazil. Investigacion y Educacion En Enfermeria39(1), 1–11. https://doi.org/10.17533/udea.iee.v39n1e07

Last updated: January 2nd, 2022   Contributors: William Byrd  |  

Alberta (Canada)

A study carried out between July and October 2020 interviewed residents in care homes, as well as family members. The residents reported missing recreational activities, the loss of social interaction within the care home (for example meal times), lack of access to physiotherapy. Some residents described loss of weight. In terms of wellbeing, residents commonly described sadness, loneliness, fear and frustration. They also commented on the impact on others, particularly residents with dementia and expressed concern for them as they were not able to make phone calls or understand the reasons for changes in routines. Some residents expressed that they felt that the public health rules were affecting them more than the rest of the population and many were critical of the measures, particularly limits on visits. Residents also felt that more staff were needed and were concerned about the wellbeing of staff and their working conditions (Ickert et al., 2021).

References:

Ickert C., Stefaniuk R., Leask B.A. (2021) Experiences of long-term care and supportive living residents and families during the COVID-19 pandemic: “It’s a lot different for us than it is for the average Joe”. Geriatric Nursing 42(6): 1547-1555 https://doi.org/10.1016/j.gerinurse.2021.10.012

Last updated: January 7th, 2022

British Columbia (Canada)

A recent survey by Safe Care BC found that many LTC staff had increased psychological fears and anxiety and intention to leave as a result of COVID-19. They felt a psychosocial burden responding to pandemic and had concerns about their personal safety and ability to care for residents (Source: https://news.gov.bc.ca/files/1.25.2021_LTC_COVID-19_Response_Review.pdf).

A report by the office of the Seniors Advocate British Columbia highlights that the use of antipsychotics among LTC residents has increased by 7% during the COVID-19 pandemic and points towards interRAI assessments suggesting ‘unintended weight loss and worsening mood’ among residents.

Last updated: November 6th, 2021

New Brunswick (Canada)

A study in New Brunswick (Canada) used interRAI LTCF data to compare impacts on depression, delirium and behavioural problems in seven LTCFs. It found that, in the period studied (three months of lockdown at the beginning of the pandemic, up to June 2020, during which those homes did not experience outbreaks and had measures in place to mitigate the impacts of lockdown) the initial lockdown period had no negative impact on depression, delirium, or behavioural problems (McArthur et al, 2021).

References:

McArthur C., Saari M., Heckman G.A. et al. (2021) Evaluating the effect of COVID-19 pandemic lockdown on Long-Term Care residents mental health: a data-driven approach in New Brunswick, JAMDA; 22(1): 187–192. doi: 10.1016/j.jamda.2020.10.028

Last updated: March 4th, 2022

Ontario (Canada)

A survey of prescriptions for all nursing home residents in Ontario found evidence of increased prescriptions of psychotropic drugs to nursing homes residents between March and September 2020, compared to prescription pre-pandemic. The authors interpret this as likely to be associated with the social isolation experienced by residents due to infection prevention and control measures or decreased capacity for staff to respond to responsive behaviours.

Last updated: November 6th, 2021

Czech Republic

A mixed methods study aimed to assess, quantitatively, the mental health of both staff and residents in long-term care facilities (LTCFs), and used qualitative methods to obtain insights into the challenges experiences in dealing with COVID-19 in care homes in the Czech Republic.

Data collection took place in April and May 2020, with a team of evaluators visiting 27 LTCFs, including children’s homes, and interviews were carried out with 378 residents, 443 members of staff and 49 managers. The study found that nearly half of residents met diagnostic criteria for anxiety or poor well-being and nearly 60% for depression. The highest rates of poor well-being were among residents in psychiatric facilities. The data from nursing homes was found to be unreliable due to high levels of cognitive impairment. There was no comparison to rates of poor mental health from before the pandemic, but the study found that COVID-related health worries were associated with poor mental health outcomes (Guerrero et al., 2021).

References:

Guerrero Z, Aliev AA, Kondrátová L, Jozefiaková B, Nesázalová N, Sa?áková JG, Winkler P. Mental Health and Quality & Safety of Care in Czech Residential Institutions during the COVID-19 Pandemic: A Mixed-Methods Study. Psychiatr Q. 2021 Dec;92(4):1393-1411. doi: 10.1007/s11126-021-09912-z.

Last updated: January 12th, 2022

Denmark

report on mental health from the nursing home sector indicated that the quality of life actually increased for the majority of residents. Nursing home managers reported that residents slept better, medication was reduced, there were fewer conflicts with residents suffering from dementia, more time for individual residents and the sickness rates among staff was lower. This was attributed to fewer common for all residents, instead members of staff make activities in smaller groups of residents or engage with them one by one. Staff reported a more relaxed atmosphere, one reason being that they did not have to engage with family members who at times are considered overly critical (Rostgaard, 2020).

However, there were also concerns that the Danish government’s response to the pandemic (e.g. care home visiting ban) was inflexible and not tailored to individuals circumstances (rather, it was based on ‘one size fits all’ rules). Combined with the late ease of restrictions, it had a negative long-term impact on older people’s mental and physical health and concerns were raised that the government should have done more to respect basic individuals’ freedoms (Source: https://www.djoef.dk/presse).

Reference:

Rostgaard T (2020) The COVID-19 Long-Term Care situation in Denmark. LTCcovid, International Long-Term Care Policy Network, CPEC-LSE, 25 May 2020.

Last updated: February 3rd, 2022

Finland

A qualitative study conducted during May to December 2020 with family members of residents in nursing homes in different parts of Finland found that family members perceived that distancing measures had aggravated the pre-existing conditions of their relatives. This included sudden progression in cognitive abilities and deterioration in physical abilities. Both family members and residents experienced grief, anxiety and severe stress (Paananen et al, 2021).

References:

Paananen J, Rannikko J, Harju M, Pirhonen J (2021) The impact of Covid-19-related distancing on the well-being of nursing home residents and their family members: a qualitative study. International Journal of Nursing Studies Advances, 3. https://doi.org/10.1016/j.ijnsa.2021.100031.

Last updated: February 1st, 2022

France

Both Senate and National Assembly commissions report the impact on wellbeing of the breakdown of care arrangements in the LTC population. There has been significant coverage in the reports, and in media, of the “syndrome de glissement” (slipping away syndrome), due to the depressive effects of isolation on older people. The Assembly report presents evidence of the impact on physical health due to the breakdown of occupational therapy and physiotherapy support, with considerably higher numbers of older people losing autonomy, and requiring support with walking and other activities of daily living.

A study carried out in the early part of the COVID pandemic investigated the levels of depression and anxiety of 58 people living in Alzheimer’s Disease in retirement homes. The study sought to identify self-perceived changes in depression and anxiety compared to before the COVID-19 pandemic using questionnaires administered by care staff. It found that participants reported significantly  higher depression and anxiety during than before the pandemic. In common to other studies, there were already high levels of depression and anxiety before the pandemic (El Haj et al., 2020).

References:

El Haj M, Altintas E, Chapelet G, Kapogiannis D, Gallouj K. High depression and anxiety in people with Alzheimer’s disease living in retirement homes during the covid-19 crisis. Psychiatry Res. 2020 Sep;291:113294. doi: 10.1016/j.psychres.2020.113294

Last updated: January 12th, 2022   Contributors: Camille Oung  |  Adelina Comas-Herrera  |  

Germany

There is no information available so far that systematically measures the impact of COVID-19 on the health and wellbeing of people with LTC needs.

Mental health

However, concerns for people’s mental health are being raised, especially for people living in residential care settings whose social life has been severely disrupted. Even before COVID-19, research has estimated that among those 65 and older living in care homes, 25-45% had depression. It has further been estimated that only 40% of those received a diagnosis and only about half of those with a diagnosis received adequate treatment and support (Zeit online, 2021; Aerzteblatt.,de, 2018).

A study by Seethaler et al (2021) investigated the impact of the COVID-19 pandemic on mental health and perceived psychosocial support for older psychiatric patients. This focused on 32 patients with affective or anxiety disorders aged over 60 years. All participants were current or former patients of the Psychiatric University Hospital of Charité at St. Hedwig Hospital, Berlin, Germany. Telephone interviews were conducted in April/May 2020 (T1) and August 2020 (T2). The psychosocial impact (PSI) of the pandemic and psychopathology were measured and the changes between T1 and T2 were examined. There was a significant positive correlation between general PSI and depression as well as severity of illness. However, neither general PSI not psychopathology changed significantly between T1 and T2. Patients reported an increase in psychosocial support between T1 and T2 and high demand for additional support. Elderly psychiatric patients showed a negative PSI of the pandemic (Seethaler et al., 2021).

References:

Aerzteblatt.,de (2018) Wissenschaftler: Depressionen bei Heimbewohner seltener behandelt.Available at: https://www.aerzteblatt.de/nachrichten/98943/Wissenschaftler-Depression-bei-Heimbewohnern-seltener-behandelt(Accessed 6 February 2022).

Seethaler, M., Just, S., Stotzner, P., Bermpohl, F., & Brandl, E. J. (2021). Psychosocial Impact of COVID-19 Pandemic in Elderly Psychiatric Patients: a Longitudinal Study. The Psychiatric Quarterly. https://doi.org/10.1007/s11126-021-09917-8

Zeit online (2021) Treffs gegen Depressionen in Alters- und Pfelgeheimen. Available at: https://www.zeit.de/amp/news/2021-02/26/treffs-gegen-depressionen-in-alters-und-pflegeheimen (Accessed 6 February 2022).

 

Last updated: February 13th, 2022   Contributors: William Byrd  |  Adelina Comas-Herrera  |  Klara Lorenz-Dant  |  Thomas Fischer  |  Kerstin Hämel  |  

Israel

Israel’s Ministry of Health collaborated with JDC-ESHEL, a social policy and research incubator NGO, to provide long-term carers and service users with information and resources on pandemic-related physical and mental wellbeing. Of note was their guide for caregivers of dementia patients, and efforts to combat loneliness amongst older people. The welfare and strengthening of resilience amongst older people during times of lockdown and social isolation have been of primary concern in the national COVID-19 plan for the aging (Magen Avot V’Emahot).

Research conducted in long term care settings has highlighted the negative emotional impact of lockdown on caregivers and older residents. In addition, older residents also experienced deterioration in the health and physical functioning as a result of discontinuation of “unnecessary” medical and social care during the first was of the pandemic in Israel (Avidor & Ayalon, 2021, Ayalon & Avidor, 2021).

Sources:

Avidor, S., and Ayalon, L. (2021). “I Didn’t Meet My Mother; I Saw My Mother”: The Challenges Facing Long-Term Care Residents and Their Families in the Age of COVID-19. Journal of Applied Gerontology. https://doi.org/10.1177/07334648211037099

Ayalon, L. and Avidor, S. (2021) ‘We have become prisoners of our own age’: from a continuing care retirement community to a total institution in the midst of the COVID-19 outbreak, Age and Ageing, Volume 50, Issue 3, May 2021, Pages 664–667, https://doi.org/10.1093/ageing/afab013

Last updated: January 2nd, 2022   Contributors: Shoshana Lauter  |  LIAT AYALON  |  

Italy

There is no information available that systematically measures the impact of COVID-19 on the health and wellbeing of people who use Long-Term Care.

A qualitative study asked family carers of people living with dementia in the community about the impacts they perceived on their relatives with dementia. The carers reported acceleration decline of both cognitive and physical abilities, increased behavioural and psychological symptoms and difficulties meeting care needs due to reduction in formal care and support (Chirico et all, 2022).

References:

Chirico, I.Ottoboni, G.Giebel, C.Pappadà, A.Valente, M.Degli Esposti, V.Gabbay, M., & Chattat, R. (2022). COVID-19 and community-based care services: Experiences of people living with dementia and their informal carers in ItalyHealth & Social Care in the Community001– 10https://doi.org/10.1111/hsc.13758

Last updated: February 21st, 2022   Contributors: Eleonora Perobelli  |  Elisabetta Notarnicola  |  William Byrd  |  

Japan

Closure of day care and community services risks having significant impact on wellbeing (Source: https://onlinelibrary.wiley.com/doi/full/10.1002/jgf2.366 ). There is research into the impact of restrictions on the general population but so far none found on the LTC population.

Last updated: August 2nd, 2021

Malaysia

A survey of 224 older people living in nursing homes in Malaysia during June to August 2020 found that the majority of respondents were severely depressed and one third reported mild to moderate anxiety and very low social support. Having lived in the nursing home for over a year, not having a hobby and low social support were associated with depression. The authors comment that these rates of depression and anxiety are expected to be higher than before the pandemic (Nair et al., 2021).

References:

Nair P, Gill JS, Sulaiman AH, Koh OH, Francis B. Mental Health Correlates Among Older Persons Residing in Malaysian Nursing Homes During the COVID-19 Pandemic. Asia Pac J Public Health. 2021 Nov;33(8):940-944. https://doi.org/10.1177/10105395211032094

Last updated: January 14th, 2022

Netherlands

Impacts on people living with dementia

A qualitative study involving semi-structured interviews with family and professional carers of people with dementia found that, for people with dementia, social distancing measures resulted in a deterioration of physical health and that the impact on emotional state and behaviour depended on the stage of dementia. The authors were not able to establish if the observed cognitive decline was due to the usual disease progression or to under stimulation due to social distancing measures.

The study found that the negative impacts were more pronounced for people living in the community with more severe dementia, and in nursing homes for people with mild to moderate dementia, the authors attributed this to the loss of ability to carry to carry out meaningful activities that provide a sense of purpose (Smaling et al., 2022).

Another study focused on the changes in behaviour considered challenging among care home residents, as reported in a survey of 199 nursing home practitioners. It found that there were reports of both increased and decreased behaviours considered challenging by staff, with a slightly higher proportion of increase. While staff attributed both increased and decreases to the ban in visits in place at the time, the most negative effects were attributed to residents not being allowed to go outside, being made to stay in their rooms and changes in organised activities, with those with mild to moderate dementia having been most affected (Leontjevas et al., 2021). A further analysis of that data explore the views of practitioners on the effects of reductions in stimuli on behaviour. The study distinguished between targeted stimuli (such as planned recreational activities) and unplanned stimuli (for example spontaneous noise in corridors). Practitioners reported that, for residents with advanced dementia and those with psychotic and agitated behaviours reductions in untargueted stimuli were beneficial, as well as the the adjustments made to daily activities. In contrast, for people without dementia and those with depressive and apathetic behaviour the reduction in stimuli was considered to have had negative effects. The study concludes that it is important to adopt approaches more tailored to the needs of individual residents in terms of the right balance between stimuli and tranquility. Practitioners supported the the idea of creating separate environments within care homes with different levels of stimulation for residents with different needs (Knippenberg et al., 2022).

Impact of physical distancing on vulnerable people needing care

A study by de Vries et al. (2022) on the impact of physical distancing on vulnerable people (including people with learning disabilities, mental health problems, older people with care needs living in the community and in residential care, as well as carers) noted a range of experiences,  from relative calmness to loneliness and loss of perspective. For those with small social networks, the loss of  care professionals and informal carers in their daily life during the pandemic meant the loss of a vital part of their social networks. Overall, the loss of social contact for a longer time was linked to low quality of life or motivation for life.

References:

Knippenberg, I.A.H., Leontjevas, R., Nijsten, J.M.H. et al. Stimuli changes and challenging behavior in nursing homes during the COVID-19 pandemic. BMC Geriatr 22, 142 (2022). https://doi.org/10.1186/s12877-022-02824-y

Leontjevas R., Knippenberg I.A.H., Smalbrugge M., et al (2021) Challenging behavior of nursing home residents during COVID-19 measures in the Netherlands, Aging & Mental Health, 25:7, 1314-1319, DOI: 10.1080/13607863.2020.1857695

Smaling HJA, Tilburgs B, Achterberg WP, Visser M. The Impact of Social Distancing Due to the COVID-19 Pandemic on People with Dementia, Family Carers and Healthcare Professionals: A Qualitative Study. International Journal of Environmental Research and Public Health. 2022; 19(1):519. https://doi.org/10.3390/ijerph19010519

de Vries, D., Pols, A., M’charek, A. and van Weert, J. (2022) The impact of physical distancing on socially vulnerable people needing care during the COVID-19
Pandemic in the Netherlands, 6(1-2): 123–140, International Journal of Care and Caring, DOI: 10.1332/239788221X16216113385146

Last updated: March 4th, 2022

Poland

Report indicated that long-term isolation of people in care homes (due to visiting bans) and limiting interpersonal contacts negatively affected well-being and residents’ health, e.g. increase in personal conflict between residents or apathy, the same report indicated that  residents in care facilities faced  problems with the access to medical care.

A qualitative study by Mackowiak et al., (2021), indicated that people with dementia living at home experienced a burden resulting from limited interactions with social contacts. Uncertainty around the pandemic, has increased their perception of loss of control and overall decreased well-being of people with dementia. Moreover, the lack of stimulation that resulted from restrictions accelerated emotional and cognitive decline.

References:

Mackowiak, M.; Senczyszyn, A.; Lion, K.; Trypka, E.; Malecka, M.; Ciulkowicz, M.; Mazurek, J.; Swiderska, R.; Giebel, C.; Gabbay, M.; et al. (2021). The Experiences of
People with Dementia and Informal Carers Related to the Closure of Social and Medical Services in Poland during the COVID-19 Pandemic – A Qualitative Study. Healthcare. https://doi.org/10.3390/ healthcare9121677

Last updated: March 7th, 2022   Contributors: Joanna Marczak  |  Agnieszka Sowa-Kofta  |  

Spain

A study in a care home in Galicia aimed to measure the decline in cognitive, functional and affective status among 98 older people living in the care home after a period of lockdown during the first wave of the pandemic (July to September 2020) and compared this to previous measures collected at three different time points to determine whether the decline had accelerated. The study also collected data on frequency of social contact.

The study found lower cognitive and functional scores and higher depression scores after the lockdown but these were not different to the decline that would be expected compared to the previous measurements, suggesting that decline had accelerated during the lockdown. Changes in depression scores were strongly associated with mental health and functional measures, suggesting that social contact is a strong protector against adverse effects (Pereiro et al., 2021).

References:

Pereiro, A.X.; Dosil-Díaz, C.; Mouriz-Corbelle, R.; Pereira-Rodríguez, S.; Nieto-Vieites, A.; Pinazo-Hernandis, S.; Pinazo-Clapés, C.; Facal, D. (2021) Impact of the COVID-19 Lockdown on a Long-Term Care Facility: The Role of Social Contact. Brain Sci. 11, 986. https://doi.org/10.3390/brainsci11080986

Last updated: March 21st, 2022   Contributors: Adelina Comas-Herrera  |  Carlos Chirinos  |  

Sweden

Studies reported negative impact on mental health of care home residents and their families following the visiting restrictions as well as on mental health of older people following government guidance for people over 70 to limit their social contact (Source: https://aldrecentrum.se/wp-content/Governmental-response-to-the-COVID-19-pandemic-in-Long-Term-Care-residences.pdf).

Last updated: November 30th, 2021

Thailand

A study in Thailand investigated how the COVID-19 pandemic has affected 200 older adults without dementia living at two government long-term care centres. The prevalence of and risk factors for post-traumatic stress, depression, and anxiety were investigated during August 2020 to October 2020.

Most older people reported a moderate or severe impact of the pandemic. The most impacted area was financial due to decreased support form outside the centre. Seventy percent of respondents reported no or mild psychological stress linked to the pandemic. A minority had post-traumatic stress, depression, or anxiety. Having respiratory tract infection symptoms and receiving news via social media was independently associated with these symptoms. Residents also reported impact on health due to having difficulties in seeing doctors and experiencing financial impacts.

References:

Srifuengfung, M., Thana-Udom, K., Ratta-Apha, W., Chulakadabba, S., Sanguanpanich, N., & Viravan, N. (2021). Impact of the COVID-19 pandemic on older adults living in long-term care centers in Thailand, and risk factors for post-traumatic stress, depression, and anxiety. Journal of Affective Disorders, 295, 353–365. https://doi.org/https://dx.doi.org/10.1016/j.jad.2021.08.044

Last updated: January 14th, 2022   Contributors: William Byrd  |  

Turkey

In Turkey, older people (over 65s) and children under 20 were subject to a strict curfew between March and June 2020 (Akkan, 2020).  A study involving 133 older adults living in nursing homes and in the community carried out in December 2020 using telephone interviews shows that, in spite of long confinements, the majority of older adults reported no or mild depression, anxiety and stress and were slightly satisfied with their lives. However, those aged over 80 and older people living in nursing homes reported worse outcomes. People living in nursing homes reported higher levels of depression and anxiety, higher anxiety about death and lower life satisfaction that people living in the community. People aged 80 or over reported higher depression, anxiety, stress and death anxiety. Older people who met their relatives less frequently were found to have lower life satisfaction and higher depression scores (Arpacioglu S et al., 2021).

References:

Akkan B and Canbazer C (2020) The Long-Term Care response to COVID-19 in Turkey. LTCcovid, International Long-Term Care Policy Network, CPEC-LSE, 10 June 2020.

Arpacioglu S, Yalçin M, Türkmenoglu F, Ünübol B, Çelebi Çakiroglu O. Mental health and factors related to life satisfaction in nursing home and community-dwelling older adults during COVID-19 pandemic in Turkey. Psychogeriatrics. 2021 Nov;21(6):881-891. doi: 10.1111/psyg.12762.

Last updated: January 26th, 2022

United Kingdom

Impacts on people living in care homes

A longitudinal qualitative study conducted in October and November 2020 and March 2021 found that family members and staff reported that residents were upset at the lack of visiting and deteriorating mental wellbeing and changes in behaviour. However, there was also an observation by staff that some residents appeared to be more settled without visits and with fewer social activities (Giebel et al., 2022).

Impacts on adults with learning disabilities

UK-wide interviews with approximately 500 adults with learning disabilities across the UK (Flynn et al. 2021) reported that in the four weeks before being interviewed in the summer of 2021: 13% of people said they often/always felt angry or frustrated, 15% often/always felt sad or down, 21% felt often/always worried or anxious, 12% often/always felt lonely with no-one to talk to, and 19% of people said they had a new or worsening health condition. Across all these indicators well-being had improved from previous interviews in winter 2020/21 and spring 2021. In the summer of 2021, 50% of adults with learning disabilities interviewed felt at least a little worried to leave the house – this was at a similar level to the winter of 2020/21, reversing an improvement in spring 2021.

The same project included surveys with approximately 300 family carers and support workers of adults with learning disabilities who could not take part in an interview. In the summer of 2021, family carers and support workers reported that 14% of people were often/always angry or frustrated in the four weeks before the survey, 12% of people were often/always sad or down, 25% of people were often/always worried or anxious, and 28% were reported to have had a new or worsening health condition in the four weeks before the survey.

References:

Flynn, S., Hayden, N., Clarke, L., Caton, S., Hatton, C., Hastings, R. P., Abbott, D., Beyer, S., Bradshaw, J., Gillooly, A., Gore, N., Heslop, P., Jahoda, A., Maguire, R., Marriott, A., Oloidi, E., Paris, A., Mulhall, P., Scior, K., Taggart, L., & Todd, S. (2021). Coronavirus and people with learning disabilities study Wave 3 Results: September 2021 (Full Report). Coventry, UK: University of Warwick. ISBN:978-1-871501-37-7

Giebel, C.Hanna, K.Marlow, P.Cannon, J.Tetlow, H.Shenton, J.Faulkner, T.Rajagopal, M.Mason, S. & Gabbay, M. (2022). Guilt, tears and burnout—Impact of UK care home restrictions on the mental well-being of staff, families and residentsJournal of Advanced Nursing001– 12https://doi.org/10.1111/jan.15181

Last updated: February 21st, 2022   Contributors: Chris Hatton  |  

England (UK)

People living in care homes

Guidance issued by the government on April 2, 2020, said that care homes should advise family and friends not to visit except in exceptional circumstances. There is concern and, increasingly, reported international evidence that some of the measures taken to reduce the risk of COVID-19 infections in care homes, such as closing care homes to visitors (including family members), reduction in social interactions and activities, and needing to isolate have had negative impacts on the wellbeing and mental health of people living in care homes (Comas-Herrera et al, 2020). There are multiple reports warning about the alarming rate of deterioration that people with dementia are experiencing under these isolating conditions and being detached from their families. For instance, a survey conducted by the charity Alzheimer’s Society found that 79% of care homes surveyed reported that the lack of social contact is causing a deterioration in the health and wellbeing of their residents with dementia. A survey of care homes from across England found that by late May and early June, 2020, 85% of managers had detected low mood among residents (Rajan et al, 2020).

People living in the community who use long-term care

There is emerging evidence that reduced use of social support services has had detrimental effects on the quality of life of people affected by dementia and older adults (Giebel et al, 2021).

In a study of community-dwelling adults with dementia and their carers by Rand et al. (2021), it was found that the later stages of COVID-19 restrictions in England (specifically, from reintroduction of the tier systems in 2nd December 2020 until the end of the study in April 2021) were associated with poorer care-related quality of life outcomes when rated by proxy based on the proxy-person perspective (i.e. the proxy respondent’s rating based on their estimate of the person with dementia’s view).

Impacts on adults with intellectual disabilities

UK-wide interviews with approximately 500 adults with intellectual disabilities across the UK reported that in the four weeks before being interviewed in the summer of 2021: 13% of people said they often/always felt angry or frustrated, 15% often/always felt sad or down, 21% felt often/always worried or anxious, 12% often/always felt lonely with no-one to talk to, and 19% of people said they had a new or worsening health condition. Across all these indicators well-being had improved from previous interviews in winter 2020/21 and spring 2021. In the summer of 2021, 50% of adults with intellectual disabilities interviewed felt at least a little worried to leave the house – this was at a similar level to the winter of 2020/21, reversing an improvement in spring 2021.

The same project included surveys with approximately 300 family carers and support workers of adults with intellectual disabilities who could not take part in an interview. In the summer of 2021, family carers and support workers reported that 14% of people were often/always angry or frustrated in the four weeks before the survey, 12% of people were often/always sad or down, 25% of people were often/always worried or anxious, and 28% were reported to have had a new or worsening health condition in the four weeks before the survey.

A study of changes in prescription in two specialist psychiatric services for people with intellectual disabilities in London (urban setting) and Cornwall (rural setting) found that, in the urban setting, there had been an 11% increase in psychotropic prescribing during the lockdown, compared the pre-lockdown period. The authors consider whether the rural setting and fewer restrictions in Cornwall may be mitigated some of the stress linked to lockdown. Another possible explanation for the difference between settings may be the composition of clinical support (psychiatrist in London compared to a multidisciplinary team in Cornwall) (Naqvi et al, 2021).

Impact on people living with dementia

During the early part of the pandemic it was reported that there was evidence of substantial increases in the prescription of anti-psychotics to people with dementia (Howard, 2020). Some of this may have been due to increased need linked to delirium management or palliative care, but it is also likely to be attributable to worsened agitation and distress linked to COVID-19 restrictions (such as people in care homes being confined to their bedrooms, or not being able to receive family visits).

A qualitative study involving people living with dementia, their carers and therapists were interviewed at two time points around May 2020 and July 2020, generating evidence on the causes and effects of deconditioning. The study observed a set-reinforcing vicious cycle among participants: lockdown made the person apathetic, demotivate, socially disengaged, frailer and less confident, which reduced their activity levels, which in turn reinforced the effects of deconditioning. External supporters had an important role in motivating people to keep active and, with appropriate support and infrastructure, some participants could use tele-rehabilitation (Di Lorito, 2021).

References:

Comas-Herrera A, Salcher-Konrad M, Baumbusch J, Farina N, Goodman C, Lorenz-Dant K, Low L-F (2020) Rapid review of the evidence on impacts of visiting policies in care homes during the COVID-19 pandemic. LTCcovid.org, International Long-Term Care Policy Network, CPEC-LSE.

Di Lorito, C., Masud, T., Gladman, J. et al. Deconditioning in people living with dementia during the COVID-19 pandemic: qualitative study from the Promoting Activity, Independence and Stability in Early Dementia (PrAISED) process evaluation. BMC Geriatr21, 529 (2021). https://doi.org/10.1186/s12877-021-02451-z

Giebel, C., Cannon, J., Hanna, K., Butchard, S., Eley, R., Gaughan, A., Komuravelli, A., Shenton, J., Callaghan, S., Tetlow, H., Limbert, S., Whittington, R., Rogers, C., Rajagopal, M., Ward, K., Shaw, L., Corcoran, R., Bennett, K., & Gabbay, M. (2020). Impact of COVID-19 related social support service closures on people with dementia and unpaid carers: a qualitative study, 25(7), 1281–1288. DOI:https://doi.org/10.1080/13607863.2020.1822292

Giebel, C., Lord, K., Cooper, C., Shenton, J., Cannon, J., Pulford, D., Shaw, L., Gaughan, A., Tetlow, H., Butchard, S., Limbert, S., Callaghan, S., Whittington, R., Rogers, C., Komuravelli, A., Rajagopal, M., Eley, R., Watkins, C., Downs, M., … Gabbay, M. (2021). A UK survey of COVID-19 related social support closures and their effects on older people, people with dementia, and carers. International Journal of Geriatric Psychiatry, 36(3), 393–402. DOI:https://doi.org/10.1002/GPS.5434

Howard, R., Burns, A., & Schneider, L. (2020). Antipsychotic prescribing to people with dementia during COVID-19. The Lancet Neurology, 19(11), 892. DOI:https://doi.org/10.1016/S1474-4422(20)30370-7

Naqvi D., Perera B., Mitchell S., Sheehan R. and Shankar R. (2021). COVID-19 pandemic impact on psychotropic prescribing for adults with intellectual disability: an observational study in English specialist community services. BJPsych Open. 8. 10.1192/bjo.2021.1064.

Rajan, S., Comas-Herrera, A. and Mckee, M., 2020. Did the UK Government Really Throw a Protective Ring Around Care Homes in the COVID-19 Pandemic?. Journal of Long-Term Care, (2020), pp.185–195. DOI: http://doi.org/10.31389/jltc.53

Rand S.E., Silarova B, Towers A.-M. and Jones K. (2021) Social care-related quality of life of people with dementia and their carers in England. Health and Social Care in the Community. https://doi.org/10.1111/hsc.13681

Willner, P., Rose, J., Stenfert Kroese, B., Murphy, G. H., Langdon, P. E., Clifford, C., Hutchings, H., Watkins, A., Hiles, S., & Cooper, V. (2020). Effect of the COVID-19 pandemic on the mental health of carers of people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 33(6), 1523–1533. DOI:https://doi.org/10.1111/JAR.12811

Last updated: March 8th, 2022   Contributors: William Byrd  |  Chris Hatton  |  Stacey Rand  |  

Northern Ireland (UK)

Impact on adults with intellectual disabilities

UK-wide interviews with approximately 500 adults with intellectual disabilities across the UK reported that in the four weeks before being interviewed in the summer of 2021: 13% of people said they often/always felt angry or frustrated, 15% often/always felt sad or down, 21% felt often/always worried or anxious, 12% often/always felt lonely with no-one to talk to, and 19% of people said they had a new or worsening health condition. Across all these indicators well-being had improved from previous interviews in winter 2020/21 and spring 2021. In the summer of 2021, 50% of adults with intellectual disabilities interviewed felt at least a little worried to leave the house – this was at a similar level to the winter of 2020/21, reversing an improvement in spring 2021.

The same project included surveys with approximately 300 family carers and support workers of adults with intellectual disabilities who could not take part in an interview. In the summer of 2021, family carers and support workers reported that 14% of people were often/always angry or frustrated in the four weeks before the survey, 12% of people were often/always sad or down, 25% of people were often/always worried or anxious, and 28% were reported to have had a new or worsening health condition in the four weeks before the survey.

Informal carers

In a survey of approximately 300 largely family carers of adults with intellectual disabilities across the UK in July/ August 2021, carers most commonly reported their caring role had affected them in terms of feeling tired (66%), a general feeling of stress (60%), or disturbed sleep (53%), with little change compared to previous surveys in December 2020 – February 2021 and April – May 2021.

 

Last updated: March 8th, 2022   Contributors: Chris Hatton  |  

Scotland (UK)

Responses to the Health and Sport Committee survey suggested that recipients of care felt an increased sense of loneliness and isolation. Unpaid carers also reported increased feelings of anxiety, depression and mental exhaustion (The Scottish Parliament, 2020).

Impacts on adults with intellectual disabilities

UK-wide interviews with approximately 500 adults with intellectual disabilities across the UK reported that in the four weeks before being interviewed in the summer of 2021: 13% of people said they often/always felt angry or frustrated, 15% often/always felt sad or down, 21% felt often/always worried or anxious, 12% often/always felt lonely with no-one to talk to, and 19% of people said they had a new or worsening health condition. Across all these indicators well-being had improved from previous interviews in winter 2020/21 and spring 2021. In the summer of 2021, 50% of adults with intellectual disabilities interviewed felt at least a little worried to leave the house – this was at a similar level to the winter of 2020/21, reversing an improvement in spring 2021.

The same project included surveys with approximately 300 family carers and support workers of adults with intellectual disabilities who could not take part in an interview. In the summer of 2021, family carers and support workers reported that 14% of people were often/always angry or frustrated in the four weeks before the survey, 12% of people were often/always sad or down, 25% of people were often/always worried or anxious, and 28% were reported to have had a new or worsening health condition in the four weeks before the survey.

Unpaid carers

In a survey of approximately 300 largely family carers of adults with intellectual disabilities across the UK in July/ August 2021, carers most commonly reported their caring role had affected them in terms of feeling tired (66%), a general feeling of stress (60%), or disturbed sleep (53%), with little change compared to previous surveys in December 2020 – February 2021 and April – May 2021.

References:

The Scottish Parliament, (2020). How has Covid-19 impacted on care and support at home in Scotland?

 

Last updated: March 8th, 2022   Contributors: Chris Hatton  |  Jenni Burton  |  David Henderson  |  David Bell  |  Elizabeth Lemmon  |  

Wales (UK)

A published paper explores the significant and high death toll of COVID-19 on care home residents and social care staff in England and Wales. These mortality figures, alongside differential treatment of residents and staff during the pandemic, are conceptualized as a form of structural abuse. Arguments are made for the inclusion of structural abuse as a separate category of elder abuse. The lack of appropriate personal protective equipment, paucity of guidance, and high mortality rate among care home staff and residents during the pandemic is indicative of social discourses that, when underpinned by ageism, reflect structural elder abuse. If structural elder abuse was to be included in classifications, it would demand a rethink of social and health-care services and the policies and practices associated with them and would reinforce the government message that safeguarding is everyone’s business (Parker, 2021).

Impact on adults with intellectual disabilities

UK-wide interviews with approximately 500 adults with intellectual disabilities across the UK reported that in the four weeks before being interviewed in the summer of 2021: 13% of people said they often/always felt angry or frustrated, 15% often/always felt sad or down, 21% felt often/always worried or anxious, 12% often/always felt lonely with no-one to talk to, and 19% of people said they had a new or worsening health condition. Across all these indicators well-being had improved from previous interviews in winter 2020/21 and spring 2021. In the summer of 2021, 50% of adults with intellectual disabilities interviewed felt at least a little worried to leave the house – this was at a similar level to the winter of 2020/21, reversing an improvement in spring 2021.

The same project included surveys with approximately 300 family carers and support workers of adults with intellectual disabilities who could not take part in an interview. In the summer of 2021, family carers and support workers reported that 14% of people were often/always angry or frustrated in the four weeks before the survey, 12% of people were often/always sad or down, 25% of people were often/always worried or anxious, and 28% were reported to have had a new or worsening health condition in the four weeks before the survey.

Unpaid or informal carers

In a survey of approximately 300 largely family carers of adults with intellectual disabilities across the UK in July/ August 2021, carers most commonly reported their caring role had affected them in terms of feeling tired (66%), a general feeling of stress (60%), or disturbed sleep (53%), with little change compared to previous surveys in December 2020 – February 2021 and April – May 2021.

References: 

Parker, J.(2021), “Structural discrimination and abuse: COVID-19 and people in care homes in England and Wales”, The Journal of Adult Protection, Vol. 23 No. 3, pp. 169-180. https://doi.org/10.1108/JAP-12-2020-0050

Last updated: March 8th, 2022   Contributors: William Byrd  |  Chris Hatton  |  

United States

A study of 224 nursing homes in Connecticut (US) found significant deterioration among residents in a broad range of physical and mental health measures. This study used Minimum Data Set assessments to measure outcomes for nursing home residents between March and July 2020 to compare to outcomes observed in 2017-2019. The study found that nursing home resident outcomes such as depression, unplanned substantial weight loss, episodes of incontinence and cognitive function worsened during that period. Weight loss, which is considered a good indicator for physical deterioration, was greater for residents who had contracted COVID-19. Other outcomes, such as severe pressure ulcers or activities of daily living scores did not show significant changes  (Levere et al., 2021).

References:

Levere M., Rowan P., Wysocki A. (2021) The adverse effect of the COVID-19 pandemic on nursing home resident well-being. J Am Med Dir Assoc 2021; https://doi.org/10.1016/j.jamda.2021.03.010

Last updated: January 10th, 2022

Vietnam

The following section refers to the impact of the pandemic and measures adopted on the health and wellbeing of the elderly population in Vietnam, as there is little information available that is specifically on users of long-term care.

In the Vietnamese government’s response to COVID-19, there were various general policies which applied to all citizens regardless of age. For example, mass communication health messages, medical declarations in which older people were given priority, and covered costs for any testing, treatment, or quarantining. In addition to benefiting from this, older people received further support for the prevention and treatment of COVID-19 and other medical conditions (source: Aging Asia report). For example, the Ministry of Health issued two documents aimed at elderly people: one with additional guidance for COVID-19 prevention for older people living in the community and the other for older people with additional non-communicable diseases (NCDs). Up to three months’ worth of prescription medication was also made available to individuals with NCDs, and the use of telemedicine was promoted (source: Aging Asia report). At home check-ups and treatment by doctors and nurses were also offered to some, although this was generally limited to those in the bigger cities (Tung, 2020).

However, there were also reports of elderly patients with various health conditions being reluctant to visit hospitals when they needed to due to fear of visiting crowded places. Across Vietnam, rates of inpatient care and hospital visits declined by around 30% during the pandemic (original source: DoH HCMC). This meant that healthcare work has often been done by the individual themselves or family members; neither of whom were likely to have the appropriate training or experience. As a result, there were reports of patients suffering from preventable conditions such as strokes and kidney and respiratory failure as a result of not going into hospital (source: Aging Asia report).

Self-reported impact of the pandemic

A recent report documented the self- reported impact of the pandemic on older people, who were categorised into non-disadvantaged and disadvantaged groups. In both groups, a majority felt that they were negatively impacted by the pandemic. The non-disadvantaged group mainly felt impacted socially due to social distancing. The disadvantaged group reported income as their biggest concern. In both groups, very few reported concerns over health: both had strong faith in the local authorities’ response to the pandemic.

References:

Tung, L. T. (2020). Social Responses for Older People in COVID-19 Pandemic: Experience from Vietnam. Journal of Gerontological Social Work, 63, 682–687. https://doi.org/10.1080/01634372.2020.1773596

Last updated: January 2nd, 2022   Contributors: Daisy Pharoah  |  

2.06. Other impacts of the pandemic on people who use Long-Term Care

Japan

There is limited information. One article points to challenges in the use of technology/remote consultations with older population, plus financial pressures on care providers.

Last updated: August 4th, 2021

Pakistan

There is little available information on the impacts of the pandemic on care sector in Pakistan, in part because the care sector itself is not well-developed. However, there are suggestions that the economic insecurity that the pandemic has given rise to has especially affected older people who were previously working informally and in small businesses, on which their livelihoods depend on (Ayesha, 2021). This is true especially as only around 20 per cent of people aged 60 or more in Pakistan receive any form of pension (Qureshi, 2021).

References:

Ayesha, A. (2021). Be age-friendly during COVID -19 Pandemic. https://en.dailypakistan.com.pk/11- May-2020/be-age-friendly-during-covid-19-pandemic

W. Qureshi (2021). Four pension reforms that could improve older people’s life in Pakistan. https://www. helpage.org/blogs/waqas-qureshi-19658/four- pension-reforms-that-could-improve-older-peoples-lifein-pakistan-1078/

Last updated: January 27th, 2022   Contributors: Daisy Pharoah  |  

Thailand

A study in Thailand investigated how the COVID-19 pandemic has affected 200 older adults without dementia living at two government long-term care centres during August 2020 to October 2020. The study found that residents in these care homes experienced negative impacts on their finances, this is because the income of most older care home residents in government care homes is from donations and this is often linked to organised activities or visits that did not take place because of infection risk reduction measures.

The residents also reported loss of freedom as they were no longer able to freely go in and out of the centre. The residents also reported more disagreements and worse relationships with family members, and with other residents and staff.

References:

Srifuengfung, M., Thana-Udom, K., Ratta-Apha, W., Chulakadabba, S., Sanguanpanich, N., & Viravan, N. (2021). Impact of the COVID-19 pandemic on older adults living in long-term care centers in Thailand, and risk factors for post-traumatic stress, depression, and anxiety. Journal of Affective Disorders, 295, 353–365. https://doi.org/https://dx.doi.org/10.1016/j.jad.2021.08.044

Last updated: January 14th, 2022

England (UK)

People with intellectual disabilities and autistic people

Apart from impacts of the COVID-19 pandemic on access to health and social care services and the health and wellbeing of people with intellectual disabilities, UK-wide interviews with approximately 500 adults with intellectual disabilities and surveys with approximately 300 family carers and support workers have reported a range of other impacts on people’s lives. In July-August 2021, largely after COVID-19 restrictions were lifted in England, 19% of people with intellectual disabilities with greater support needs across the UK (including people with profound and multiple intellectual disabilities) were reported to be still shielding. Over a quarter of adults with intellectual disabilities reported that someone they knew well had died (of any cause) during the COVID-19 pandemic. In terms of paid employment, most but not all people with intellectual disabilities in paid employment before the pandemic were in paid employment in the July/August 2021, often via furlough or people’s jobs being held open (Flynn et al., 2021).

No systematic information is available concerning the impact of the COVID-19 pandemic on autistic people without intellectual disabilities in England.

People with impaired mental capacity living in care homes and human rights

There have been concerns about the impact of the pandemic on the human rights of people with impaired mental capacity living in care homes, with research showing that the key legal mechanisms to protect the human rights of care home residents did not operate well, with confusion among professionals as to whether the public health and infection control guidance should supersede, or not, the legal framework that protects the rights of exceptionally vulnerable residents (Kuylen et al. 2022).

References:

Flynn, S., Hayden, N., Clarke, L., Caton, S., Hatton, C., Hastings, R. P., Abbott, D., Beyer, S., Bradshaw, J., Gillooly, A., Gore, N., Heslop, P., Jahoda, A., Maguire, R., Marriott, A., Oloidi, E., Paris, A., Mulhall, P., Scior, K., Taggart, L., & Todd, S. (2021). Coronavirus and people with learning disabilities study Wave 3 Results: September 2021 (Full Report). Coventry, UK: University of Warwick. ISBN: 978-1-871501-37-7

Kuylen M., Wyliie A., Bhatt V., Fitton E., Michalowski S., Martin W. (2022) COVID-19 and the Mental Capacity Act in care homes: Perspectives from capacity professionals. Health and Social Care in the Community. https://doi.org/10.1111/hsc.13747

Last updated: March 7th, 2022   Contributors: Chris Hatton  |  Adelina Comas-Herrera  |  

Northern Ireland (UK)

Adults with intellectual disabilities and autistic people

Apart from impacts of the COVID-19 pandemic on access to health and social care services and the health and wellbeing of people with intellectual disabilities, UK-wide interviews with approximately 500 adults with intellectual disabilities and surveys with approximately 300 family carers and support workers have reported a range of others impacts on people’s lives. In July – August 2021, largely after COVID-19 restrictions were lifted in England, 19% of people with intellectual disabilities with greater support needs across the UK (including people with profound and multiple intellectual disabilities) were reported to be still shielding. Over a quarter of adults with intellectual disabilities reported that someone they knew well had died (or any cause) during the COVID-19 pandemic. In terms of paid employment, most but not all people with intellectual disabilities in paid employment before the pandemic were in paid employment in July/ August 2021, often via furlough or people’s jobs being held open.

No systematic information is available concerning the impact of the COVID-19 pandemic on autistic people without intellectual disabilities in England.

Last updated: March 8th, 2022   Contributors: Chris Hatton  |  

Scotland (UK)

People with intellectual disabilities and autistic people

Apart from impacts of the COVID-19 pandemic on access to health and social care services and the health and wellbeing of people with intellectual disabilities, UK-wide interviews with approximately 500 adults with intellectual disabilities and surveys with approximately 300 family carers and support workers have reported a range of others impacts on people’s lives. In July – August 2021, largely after COVID-19 restrictions were lifted in England, 19% of people with intellectual disabilities with greater support needs across the UK (including people with profound and multiple intellectual disabilities) were reported to be still shielding. Over a quarter of adults with intellectual disabilities reported that someone they knew well had died (or any cause) during the COVID-19 pandemic. In terms of paid employment, most but not all people with intellectual disabilities in paid employment before the pandemic were in paid employment in July/ August 2021, often via furlough or people’s jobs being held open.

No systematic information is available concerning the impact of the COVID-19 pandemic on autistic people without intellectual disabilities in England.

Last updated: March 8th, 2022   Contributors: Chris Hatton  |  

Wales (UK)

People with intellectual disabilities and autistic people

Apart from impacts of the COVID-19 pandemic on access to health and social care services and the health and wellbeing of people with intellectual disabilities, UK-wide interviews with approximately 500 adults with intellectual disabilities and surveys with approximately 300 family carers and support workers have reported a range of others impacts on people’s lives. In July – August 2021, largely after COVID-19 restrictions were lifted in England, 19% of people with intellectual disabilities with greater support needs across the UK (including people with profound and multiple intellectual disabilities) were reported to be still shielding. Over a quarter of adults with intellectual disabilities reported that someone they knew well had died (or any cause) during the COVID-19 pandemic. In terms of paid employment, most but not all people with intellectual disabilities in paid employment before the pandemic were in paid employment in July/ August 2021, often via furlough or people’s jobs being held open.

No systematic information is available concerning the impact of the COVID-19 pandemic on autistic people without intellectual disabilities in England.

Last updated: March 8th, 2022   Contributors: Chris Hatton  |  

2.07. Impacts of the pandemic on unpaid carers

Overview

As discussed in section 3.12 (Measures to support unpaid carers)., in many countries guidance and measures to support unpaid carers was issued relatively late in the pandemic. At the same time, many carers having to provide additional care due to reductions in formal care or in care from other unpaid carers. In contrast, unpaid carers of people living in care homes were forced to reduce the amount of care they provided as their access to care homes was restricted (O’Caoimh R., et al., 2020 and Smaling et al, 2021).

Brief overview of research evidence on the impact of the pandemic on unpaid carers:

The evidence base on the impacts of the pandemic on unpaid carers is growing. A rapid review of the impacts of COVID-19 on unpaid carers of adults with long-term care needs, covering evidence up to November 2020, identified 40 studies and the following key themes (Lorenz-Dant and Comas-Herrera, 2021):

  • – Increase in the care commitment by carers and the responsibilities they shoulder
  • – Great concern about the implications of COVID for the person they care for
  • – Reduced availability of formal and informal support structures
  • – Decreased ability to maintain employment
  • – Negative physical and mental health implications
  • – Negative financial implications
  • – Women, younger carers, people with existing financial difficulties and  those from minor groups were more at risk of negative outcomes
  • – Carers of people living in residential settings have experienced reduced contact and great worry about the quality of care and adverse consequences for their relatives.

A scoping review of the impact of the COVID-19 pandemic on family carers in the community, covering evidence published up to 16th July 2021 published in English, identified 52 articles. The findings were categorised into four key themes (Muldrew et al., 2021):

  • – Decline in psychological wellbeing
  • – Concerns about personal health and wellbeing
  • – Practical/logistical concerns
  • – Removal or uncertainty of support
Impacts on care partners/family carers of people living with dementia

A systematic review of the psychological consequences of the pandemic on care partners of people with dementia and people with dementia suggests that the psychological and physical burden experienced during COVID-19 has increased greatly and that the clinical condition of the persons with dementia has worsened. The increase in perceived burden appears to be higher for those caring for people with more severe dementia (Carbone et al, 2021).

Exacerbation of gender inequalities in caring

A Spanish study examined gender differences in the experiences of unpaid carers during the pandemic and found that female carers experienced a bigger increase in caregiving intensity and burden and a stronger deterioration in self-perceived health than male carers. This appeared to be linked to men experiencing fewer reductions in informal support. However, men who provided high intensity care experienced deteriorations in health similar to female carers (Del Rio et al., 2022). Similarly, Carbone et al (2021) also report that female gender was a risk factor for worse psychological outcomes for unpaid carers of people living with dementia.

Positive experiences

While most of the outcomes for carers reported in the literature are negative, a qualitative study in Australia focusing on positive experiences arising from COVID-19 among unpaid carers of people with dementia found positive caring experiences in all timeframes, reporting stronger and closer caring relationships and developed self-care strategies (Tulloch et al., 2022)

References:

Carbone, E. A., de Filippis, R., Roberti, R., Rania, M., Destefano, L., Russo, E., De Sarro, G., Segura-Garcia, C., & De Fazio, P. (2021). The Mental Health of Caregivers and Their Patients With Dementia During the COVID-19 Pandemic: A Systematic Review. Frontiers in psychology, 12, 782833. https://doi.org/10.3389/fpsyg.2021.782833

Del Río-Lozano M, García-Calvente M, Elizalde-Sagardia B, Maroto-Navarro G. (2022) Caregiving and Caregiver Health 1 Year into the COVID-19 Pandemic (CUIDAR-SE Study): A Gender Analysis. International Journal of Environmental Research and Public Health;19(3). https://doi.org/10.3390/ijerph19031653

Lorenz-Dant, K. and Comas-Herrera, A., 2021. The Impacts of COVID-19 on Unpaid Carers of Adults with Long-Term Care Needs and Measures to Address these Impacts: A Rapid Review of Evidence up to November 2020. Journal of Long-Term Care, (2021), pp.124–153. DOI: http://doi.org/10.31389/jltc.76

Muldrew, D. H. L., Fee, A., & Coates, V. (2021). Impact of the COVID-19 pandemic on family carers in the community: A scoping review. Health & Social Care in the Community, 00, 1–11. https://doi.org/10.1111/hsc.13677

O’Caoimh R, O’Donovan MR, Monahan MP, Dalton O’Connor C, Buckley C, Kilty C, Fitzgerald S, Hartigan I and Cornally N (2020) Psychosocial Impact of COVID-19 Nursing Home Restrictions on Visitors of Residents With Cognitive Impairment: A Cross-Sectional Study as Part of the Engaging Remotely in Care (ERiC) Project. Front. Psychiatry 11:585373. doi: 10.3389/fpsyt.2020.585373

Smaling HJA, Tilburgs B, Achterberg WP, Visser M. The Impact of Social Distancing Due to the COVID-19 Pandemic on People with Dementia, Family Carers and Healthcare Professionals: A Qualitative Study. International Journal of Environmental Research and Public Health. 2022; 19(1):519. https://doi.org/10.3390/ijerph19010519

Tulloch K., McCaul T and Scott T.L. (2022) Positive Aspects of Dementia Caregiving During the COVID-19 Pandemic, Clinical Gerontologist, 45:1, 86-96, DOI: 10.1080/07317115.2021.1929630

International reports and sources

Evidence Reviews:

Carbone, E. A., de Filippis, R., Roberti, R., Rania, M., Destefano, L., Russo, E., De Sarro, G., Segura-Garcia, C., & De Fazio, P. (2021). The Mental Health of Caregivers and Their Patients With Dementia During the COVID-19 Pandemic: A Systematic Review. Frontiers in psychology, 12, 782833. https://doi.org/10.3389/fpsyg.2021.782833

Lorenz-Dant, K. and Comas-Herrera, A., 2021. The Impacts of COVID-19 on Unpaid Carers of Adults with Long-Term Care Needs and Measures to Address these Impacts: A Rapid Review of Evidence up to November 2020. Journal of Long-Term Care, (2021), pp.124–153. DOI: http://doi.org/10.31389/jltc.76

Muldrew, D. H. L., Fee, A., & Coates, V. (2021). Impact of the COVID-19 pandemic on family carers in the community: A scoping review. Health & Social Care in the Community, 00, 1–11. https://doi.org/10.1111/hsc.13677

Argentina

Studies suggest that unpaid carer burden has increased. Some carers have stopped paid carers coming in.

Last updated: January 2nd, 2022

Australia

A report from Australia suggests increased care needs and reduced availability of paid services. Some retired carers experienced a drop in their funds. Unpaid carers of people living in residential care settings were concerned about their well-being (Lorenz-Dant and Comas-Herrera, 2021).

A six-wave longitudinal study by Abbasi-Shavazi et al., (2022) also illustrated that COVID19 had a more sever impact on carers relative to non-carers in terms of life satisfaction and psychological distress. However, the study also noted that free childcare was important to carers’ wellbeing (more than to non-carers) as the additional burden of caring for young children and older person/person with disability may have explained the greater deterioration of life satisfaction and psychological distress of carers.

Positive impacts for unpaid carers of people living dementia

A study by Tulloch et al., (2021) sought to identify positive impacts of the pandemic for unpaid carers of individuals with dementia. Interviews were conducted between June and August 2020 (during the second wave of the pandemic), and participants were asked about their experiences and perceptions of care before, during, and moving forward from COVID-19. Interestingly, when asked about their perceptions of care prior to the pandemic, interviewees tended not to discuss aspects of care that related to their own strengths or benefits: answers revolved around perceptions of the experiences of the person with dementia for whom they were providing care. In contrast, when discussing the provision of care during the pandemic, participants elaborated on their own caregiving experiences and what they saw as important values in the act of caregiving. In addition to these metacognitive elements, changes in behavioural approaches to providing care during the pandemic were reported, such as engaging in self-care strategies and seeking and accepting additional help when needed. Furthermore, participants expressed a desire to continue to engage with these behaviours beyond the pandemic. This research suggests that the pandemic may have provided those who provide informal care to people with dementia with an important opportunity to find profound meaning in the care they provide, and a recognition of the importance of looking after themselves to strengthen their provision of care.

References:

Abbasi-Shavazi, A., Biddle, N., Edwards, B. and Jahromi, M. (2022) Observed effects of the COVID-19 pandemic on the life satisfaction, psychological distress and loneliness of Australian carers and non-carers, 6(1-2): 179–209, International Journal of Care and Caring, DOI: 10.1332/239788221X16323394592678

Lorenz-Dant, K. and Comas-Herrera, A., 2021. The Impacts of COVID-19 on Unpaid Carers of Adults with Long-Term Care Needs and Measures to Address these Impacts: A Rapid Review of Evidence up to November 2020. Journal of Long-Term Care, (2021), pp.124–153. DOI: http://doi.org/10.31389/jltc.76

Tulloch, K., McCaul, T., & Scott, T. L. (2021). Positive Aspects of Dementia Caregiving During the COVID-19 Pandemic. Clinical Gerontologist, 45(1), 86–96. https://doi.org/10.1080/07317115.2021.1929630/SUPPL_FILE/WCLI_A_1929630_SM0674.DOCX

Last updated: March 4th, 2022   Contributors: Daisy Pharoah  |  

Austria

A survey in Austria ‘among 100 low-income informal carers’ found that reduced availability of home care and community services as well as reduced support from other family members led to an increase in the amount of care provided by unpaid carers, and among 16% of surveyed participants reported ‘a reduction of paid work’.

Last updated: January 6th, 2022

Canada

Research found that unpaid carers were worried about the impact on their relatives with dementia and reported reduced or altered formal care support, as well as anxiety and feelings of burnout (Sources: https://journal.ilpnetwork.org/articles/10.31389/jltc.76/; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7952494/).

Last updated: January 6th, 2022

Finland

A qualitative study conducted during May to December 2020 with family members of residents in nursing homes in different parts of Finland found that both family members and residents experienced grief, anxiety and severe stress. Family members were concerned that the residents lives were at risk due to lack of social contact and activity. They also expressed frustration at not being able to contribute to the care of their relatives or to touch them, when visits were allowed (Paananen et al, 2021).

References:

Paananen J, Rannikko J, Harju M, Pirhonen J (2021) The impact of Covid-19-related distancing on the well-being of nursing home residents and their family members: a qualitative study. International Journal of Nursing Studies Advances, 3. https://doi.org/10.1016/j.ijnsa.2021.100031.

Last updated: February 1st, 2022

France

A qualitative study by Giraud et al., (2022) reported that the reduction or suspension of medico-social service worsened the situation of family carers who receive cash for care payments in France. Family carers reported higher levels of fatigue and tensions. Most carers were left on their own with the reorganisation of the care systems and very few received support or guidance from the administration.

References:

Giraud, O., Petiau, A., Touahria-Gaillard, A., Rist, B. and Trenta, A. (2022). Tensions and polarities in the autonomy of family carers in the context of the COVID-19 pandemic in France, 6(1-2): 141–156, International Journal of Care and Caring, DOI: 10.1332/239788221X16316514499801

Last updated: March 8th, 2022

Germany

Greater responsibility and less support

A survey among family carers of older people in April/May 2020 found that 39% of unpaid carers agreed that they had greater care responsibility as previous support had disappeared. This was linked both to reductions in support from neighbours and family, and to a reduction in formal care (particularly day care) (Eggert et al., 2020).

References

Eggert, S., Teubner, C., Budnick, A., Gellert, P. & Kuhlmey, A. (2020) Pflegende Angehörige in der COVID-19-Krise: Ergebnisse einer bundesweiten Befragung. Available at: https://www.zqp.de/wp-content/uploads/ZQP-Analyse-Angeh%C3%B6rigeCOVID19.pdf (Accessed 31 January 2022).

Last updated: February 12th, 2022   Contributors: Klara Lorenz-Dant  |  

India

Unpaid carers worried about protecting their relatives with dementia, keeping the occupied inside the house and adhering to hygiene measures. Unpaid carers found working and caring challenging and expressed concerns about financial implications. Formal and informal networks were less well accessible and there was difficulty in accessing medical care (Vaitheswaran et al., 2020).

References:

Vaitheswaran, S., Lakshminarayanan, M., Ramanujam, V., Sargunan, S., & Venkatesan, S. (2020). Experiences and Needs of Caregivers of Persons With Dementia in India During the COVID-19 Pandemic-A Qualitative Study. The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry, 28(11), 1185–1194. https://doi.org/10.1016/j.jagp.2020.06.026

Last updated: January 6th, 2022

Ireland

Quantitative evidence

An online survey of 225 relatives of people living in care homes carried out in June 2020 examined the perceived  impacts of visiting restrictions on perceived loneliness, well-being and carer quality of life. The study found that many visitors experienced low psychosocial and emotional well-being during, the impacts were greater among relatives of people with cognitive impairment. Almost a fight of respondents reported that support for their role as carers from staff in the care homes had been poor and this had impacted their quality of life. Most respondents also reported that they perceived that the residents were not coping well (O’Caoimh R., et al., 2020).

References:

O’Caoimh R, O’Donovan MR, Monahan MP, Dalton O’Connor C, Buckley C, Kilty C, Fitzgerald S, Hartigan I and Cornally N (2020) Psychosocial Impact of COVID-19 Nursing Home Restrictions on Visitors of Residents With Cognitive Impairment: A Cross-Sectional Study as Part of the Engaging Remotely in Care (ERiC) Project. Front. Psychiatry 11:585373. doi: 10.3389/fpsyt.2020.585373

Last updated: January 9th, 2022

Italy

Unpaid carers of people with dementia reported that caring was more challenging, experienced high stress levels, and other negative implications. This was atttirbuted to the impact of restrictive measures, fear of contagion and feeling abandoned by the usual services and other forms of support that were disrupte by the pandemic (Cagnin et al., 2020 and Chirico et al. 2022).

References:

Cagnin A., Di Lorenzo R., Marra C., et al. (2020) Behavioral and Psychological Effects of Coronavirus Disease-19 Quarantine in Patients with Dementia. Frontiers in Psychiatry 11. https://doi.org/10.3389/fpsyt.2020.578015

Chirico, I.Ottoboni, G.Giebel, C.Pappadà, A.Valente, M.Degli Esposti, V.Gabbay, M., & Chattat, R. (2022). COVID-19 and community-based care services: Experiences of people living with dementia and their informal carers in ItalyHealth & Social Care in the Community001– 10https://doi.org/10.1111/hsc.13758

Last updated: March 7th, 2022   Contributors: Klara Lorenz-Dant  |  Adelina Comas-Herrera  |  

Jamaica

At the beginning of the pandemic, when there were curfews in place, the list of people exempt from the curfew did not include unpaid carers or paid home care workers, it is expected that this forced some caregivers to have made life changes in order to continue providing care (for example moving in together).

The loss of routine activities may have resulted in loss of the social and practical support that many carers rely on, for example through church activities.

The banning of visitors to long-term care facilities may have also affected the ability of carers to provide adequate supplies of medication and toiletries, as well as emotional support to their relatives.

Source: https://ltccovid.org/wp-content/uploads/2020/05/The-COVID-19-Long-Term-Care-situation-in-Jamaica-25-May-2020-1.pdf

Last updated: January 2nd, 2022

Netherlands

A report from November 2020 indicates that unpaid carers in the Netherlands have experienced more pressure and stress in their caring role since the COVID-19 pandemic.

Impacts on family carers of people living with dementia

A qualitative study involving semi-structured interviews with family and professional carers of people with dementia found that family carers of people living dementia found difficult to cope with visiting restrictions, experienced anxiety regarding safety and had higher carer burden.

Relatives of people living in care homes reported that video calling and window visits were difficult as people with dementia often found it difficult to communicate in this way or use equipments, but relatives stated that this was better than no communication. They also worried that their relatives with dementia would no longer recognise them when the restrictions were lifted. Their carer burden was reduced, but they felt sidelined as they were no longer able to continue providing care.

Carers of people living in the community tried to keep the “bubble” around the person with dementia small. They worried about professional carers not adhering to safety measures and experienced higher care burden.

References:

Smaling HJA, Tilburgs B, Achterberg WP, Visser M. The Impact of Social Distancing Due to the COVID-19 Pandemic on People with Dementia, Family Carers and Healthcare Professionals: A Qualitative Study. International Journal of Environmental Research and Public Health. 2022; 19(1):519. https://doi.org/10.3390/ijerph19010519

Last updated: January 6th, 2022

Poland

A qualitative study among informal carers of people with dementia, indicated that increased caring responsibilities during pandemic (e.g. due to closures of social and medical services) have led to lower mental and physical well-being for carers, leading to  causing sleep disturbances, depression or anxiety as well as increasing carer burnout (Mackowiak et al. 2021).

References:

Mackowiak, M.; Senczyszyn, A.; Lion, K.; Trypka, E.; Malecka, M.; Ciulkowicz, M.; Mazurek, J.; Swiderska, R.; Giebel, C.; Gabbay, M.; et al. The Experiences of
People with Dementia and Informal Carers Related to the Closure of Social and Medical Services in Poland during the COVID-19 Pandemic – A Qualitative Study. Healthcare. https://doi.org/10.3390/ healthcare9121677

Last updated: March 7th, 2022   Contributors: Joanna Marczak  |  

Spain

The impact on families and, specifically on women, has been intense and, in some cases, devastating due to the loss of support and essential social networks for care, disrupting the process of extension and externalization of care. This has caused the reorganization of care and a change in the mosaic of care (Soronellas and Comas-d’Argemir, 2017). The closure of day centres, the crisis in residences, the reduction of Home Help Service (SAD), the loss of some paid workers, the fear of contagion and the strict home confinement of older people have transferred care responsibilities to households. As a result, care has been refamiliarised, and, with it, women have absorbed much of the impact of th