LTCcovid Country Profiles

Responses to 2.04. Impacts of the pandemic on access to care for people who use 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 was compiled and updated voluntarily by experts on LTC all over the world. Members of the Social Care COVID-19 Resilience and Recovery project moderated the entries and edited as needed. It was updated regularly until the end of 2022.

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.  (2022) 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.


 

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

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  |  


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


On March 11, 2020 the government introduced a national lockdown and only the provision of vital services were to continue. As a result, day care centres for older people closed down and home care was reduced or cancelled. In the nursing homes, a ban for visitors was introduced and many nursing homes introduced compartmentalization. There is general agreement that the restrictions saved lives but also came at a cost.

As part of the evaluation of the pandemic management, the national research center VIVE has conducted 29 qualitative interviews among older people and their relatives. Overall, the finding is that service provision has not been severely affected during the pandemic. It was accepted as a necessary and limited precaution. Physical training and rehabilitation may have been cancelled but has been opened up again (Martin and Navne, 2022). Interviews among management and staff from different nursing homes generally convey that the restrictions were hard for users, informal carers and also staff, but that they were necessary and that the residents supported the restrictions (Topholm and Kjellberg, 2022).

A survey among 1.419 members of the Alzheimer‘s Society conducted in mid-June 2020 (response rate 21,2%) concluded that the lock-down of respite care in day centres affected them as relatives as well as the users (Alzheimerforeningen, 2021).

Reference:

Alzheimerforeningen (2021) Livet under COVID-19. Coronakrisens betydning og konsekvenser for pårørende til per soner med demens sygdom. København: Alzheimerforeningen, https://www.alzheimer.dk/media/f4fjzr4p/livet-under-covid-19-final.pdf

Martin, H.M. and Navne, L.E. (2022) Borgeres og pårørendes perspektiver på håndteringen af covid-19-epidemien. Delrapport 5. https://www.vive.dk/da/udgivelser/borgeres-og-paaroerendes-perspektiver-paa-haandteringen-af-covid-19-epidemien-17875/

Topholm, E.H-E. and Kjellberg, P.K. (2022) Decentrale beretninger fra hjemmeplejen og plejecentre under covid-19-epidemien. Delrapport 4. København: VIVE. https://www.vive.dk/media/pure/17876/6978327

 

Last updated: May 25th, 2023   Contributors: Joanna Marczak  |  


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


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


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  |  


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


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


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  |  


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


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


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  |  


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


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


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


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  |  


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  |  


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  |  


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  |  


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  |  


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  |  


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  |  


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  |  


Contributors to the LTCcovid Living International Report, so far:

Elisa Aguzzoli, Liat Ayalon, David Bell, Shuli Brammli-Greenberg, Erica BreuerJorge Browne Salas, Jenni Burton, William Byrd, Sara CharlesworthAdelina Comas-Herrera, Natasha Curry, Gemma Drou, Stefanie Ettelt, Maria-Aurora Fenech, Thomas Fischer, Nerina Girasol, Chris Hatton, Kerstin HämelNina Hemmings, David Henderson, Kathryn Hinsliff-Smith, Iva Holmerova, Stefania Ilinca, Hongsoo Kim, Margrieta Langins, Shoshana Lauter, Kai Leichsenring, Elizabeth Lemmon, Klara Lorenz-Dant, Lee-Fay Low, Joanna Marczak, Elisabetta Notarnicola, Cian O’DonovanCamille Oung, Disha Patel, Martina Paulikova, Eleonora Perobelli, Daisy Pharoah, Stacey Rand, Tine Rostgaard, Olafur H. Samuelsson, Maximilien Salcher-Konrad, Benjamin Schlaepfer, Cheng Shi, Cassandra Simmons, Andrea E. SchmidtAgnieszka Sowa-Kofta, Wendy Taylor, Thordis Hulda Tomasdottir, Sharona Tsadok-Rosenbluth, Sara Ulla Diez, Lisa van Tol, Patrick Alexander Wachholz, Jae Yoon Yi, Jessica J. Yu

This report has built on previous LTCcovid country reports and is supported by the Social Care COVID-19 Resilience and Recovery project, which is funded by the National Institute for Health Research (NIHR) Policy Research Programme (NIHR202333) and by the International Long-Term Care Policy Network and the Care Policy and Evaluation Centre at the London School of Economics and Political Science. The views expressed in this publication are those of the author(s) and not necessarily those of the funders.