LTCcovid Country Profiles

Responses to 1.11. Role of unpaid carers and policies to support them

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.

 

About this question

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).  The numbers of carers have also increased in the Europe between 2007 and 2021 from 1 in 3 to 1 in 2 (Ilinca and Simmons, 2022). Unpaid carers also provide a lion’s share of care in Sub-Saharan Africa, US, or Israel (see country reports in this section).

Gender care gap

Unpaidc care tends to be gendered i.e. women  tend to provide more informal care than men. For example, in  Austria women 60% provide unpaid care and  48% of men. In Spain the figure is  66% for women vs.
54% for men. Moreover, women tend to report more perceived pressure to provide unpaid care than men: in the EU in 2021 65.7% of women and 49.8 % of men reported feeling obliged to provide unpaid care  (Ilinca and Simmons, 2022).

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

Ilinca, S, Simmons, C. (2022) The time to care about care: Responding to changing attitudes, expectations and preferences on long-term care in Europe. InCARE Policy brief No. 2 

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. 

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

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

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

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

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

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

Traditionally, the extended family such as adult children or children-in-law are in Denmark more likely to provide mainly more practical tasks, such as providing transport to the doctor or assisting with administrative issues. However, as fewer people receive home care services, the family must increasingly take over and pro-vide informal care. There are no regular surveys of informal care but in a 2016 survey it was estimated that 16% of the total population provided unpaid care at least once a week (WHO, 2019). In the preparatory work for the new Senior Citizens’ Act it is specifically stated that informal carers are expected to be more involved in caring.

Unlike other Nordic countries, Denmark does not have a home care allowance paid to informal carers of frail older people as a substitute for formal care provision. Only in the case of terminal illness, an informal carer can receive a cash benefit as well as the right to take leave. Persons caring for a close relative or friend who is terminally ill and wishes to remain at home, are therefore entitled to receive compensation for loss of earnings. Payment of the benefit is conditional on the recipient of care being terminally ill and not using hospital facilities. Furthermore, the recipient of care must consent to the care arrangement. The carer must also receive consent from their employer to take the necessary leave. All public employers supposedly comply with the aim of the scheme and should grant permission to take leave. In general, the allowance is only paid on loss of earnings. Employees and self-employed, however, are covered by the scheme, but pensioners, recipients of social assistance and students are not included.

The municipal board can, however, in very special cases decide to employ a spouse or close relative as a home help. The carer then becomes employed in the municipal home help arrangement for an agreed period of time with the purpose of caring for an older person. The carer is paid the same hourly rate as public home helpers, and is covered by the same social rights and insurances. This means that the carer is entitled to sickness benefit, and earns credits for any supplementary pension and labour market pension. This scheme is hardly ever used.

The municipality must support informal carers, for instance by informing them about the possibilities of receiving supplementary help from a home help, home nurse or around-the-clock domiciliary care. Help can also be obtained if it becomes necessary to adapt the home. For the relief of the carer, the older person can stay for a short-term period in a nursing home or a day home. Additional services for caregivers include training and education, often focused on improving knowledge and ability to provide support and on improving coping skills.

In order to ensure that older people or carers do not have any extra expenses due to caring at home, help can be obtained to cover expenses for prescribed medicine, nursing supplies and such items. Relief measures apply whether or not the carer is entitled to care compensation and are provided without account of either the earnings of the carer or recipient of care.

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: May 24th, 2023

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 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

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

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 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 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

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

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

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  |  

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  |  

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

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

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  |  

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

Contributors to the LTCcovid Living International Report, so far:

Elisa Aguzzoli, Liat Ayalon, David Bell, Shuli Brammli-Greenberg, Erica Breuer, Jorge Browne Salas, Jenni Burton, William Byrd, Sara Charlesworth, Adelina Comas-Herrera, Natasha Curry, Gemma Drou, Stefanie Ettelt, Maria-Aurora Fenech, Thomas Fischer, Nerina Girasol, Chris Hatton, Kerstin Hämel, Nina 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’Donovan, Camille 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. Schmidt, Agnieszka 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.