LTCcovid Country Profiles

Responses to 3.12. Measures to support unpaid carers

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

As shown in Part 2 of this report, unpaid carers have experienced substantial negative impacts during the pandemic, affecting their mental, physical and financial health.

Across countries voluntary organisations have responded quickly trying to offer unpaid carers information and remote services. In several countries, Ministries and local authorities have also offered information. In some countries, policy makers have established dedicated support to support family carers (e.g. financial support, relaxation of existing policies, provision of PPE and other resources, paid care leave) while in others, carers may have benefited from general measures put in place to mitigate the financial impact of the pandemic.

Specific governmental measures to support unpaid carers have included:

  • – financial support, for example special care leave (Austria, Belgium, Luxemburg), the right to receive a care-giver allowance as a wage replacement benefit for an extended period of up to 20 working days (instead of 10 days) to provide or organise care in situations caused by the pandemic (Germany)
  • – targeted guidance on dealing with COVID-19 while providing care
  • – identification of unpaid carers as key workers,
  • – providing access to testing, telehealth, PPE and vaccinations.
  • – psychological support (Austria, Slovenia)
  • – toll-free number to receive advice and support (France)

A scoping review covering academic studies up to July 2021 found that support measures for unpaid carers were discussed in 12 studies, but only one of these was a Randomised Controlled Trial (RCT) of an intervention. The interventions described included informal neighbourhood support, social worker support, memory cafes and technology. The RCT was of an intervention consisting of videoconference coaching and access to a website with tailored to distance carers of people with cancer, which was found to be effective in reducing anxiety and distress for unpaid carers.

There is also evidence of how existing services and forms of support, such as the Care Ecosystem programme, in four states of the United States, adapted its activities to support unpaid carers of people with dementia during the pandemic (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

International reports and sources

This rapid review (currently being updated), covered measures to support unpaid carers during the pandemic up to November 2020, as well as evidence on the impacts of the pandemic on carers: https://journal.ilpnetwork.org/articles/10.31389/jltc.76/

This report from June 2020 covered measures to support unpaid carers in the early part of the pandemic (https://ltccovid.org/wp-content/uploads/2020/06/International-measures-to-support-unpaid-carers-in-manage-the-COVID19-situation-17-June.pdf).

This scoping review also covers measures adopted to support unpaid carers:

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

Some information on support measures for unpaid carers during the pandemic in the European Union can be found in a 2021 EU report on LTC (Publications catalogue – Employment, Social Affairs & Inclusion – European Commission (europa.eu).

Carers Australia have published resources and guides to help informal carers throughout the pandemic. The government has not introduced specific funding support for unpaid carers, however, unpaid carers are eligible for the Australian Government’s Coronavirus Supplement.

Funding for the My Aged Care website and phone services was boosted through an extra $12.3m to support. The Carer Gateway website also provides information for family carers.

Most unpaid carers are eligible for COVID-19 vaccines as part of the phase 1b of the vaccination rollout (which started in March 2021).

Last updated: December 22nd, 2021

Austria has supported carers through telephone hotlines (for psychological counselling, self-help, guidance, resources). An online course for unpaid carers is being provided by the Austrian Red cross. The national dementia strategy and the Austrian carers association provide links to NGO support. (https://ltccovid.org/wp-content/uploads/2020/07/The-COVID-19-Long-Term-Care-situation-in-Austria-13-July-1.pdf). An article by Leichsenring and colleagues published in the Journal of Long-Term Care highlights the limited support available for unpaid carers.

Last updated: September 7th, 2021

In Brazil a number of organisations have developed technical and educational guidelines. The Ministry of Women, Family and Human Rights established a website to provide family carers and people with long-term care needs with information around the COVID-19 pandemic. Some organisations have also established psychosocial activities (https://ltccovid.org/wp-content/uploads/2020/05/COVID-19-Long-term-care-situation-in-Brazil-6-May-2020.pdf).

Last updated: September 7th, 2021

The Canada Emergency Response Benefit (CERB) was offered between March 15, 2020 and September 26, 2020. Individuals were eligible if they stopped working due to taking care of a family member with COVID-19, having a disability with usual care not available because of COVID-19, or a child because schools are closed. CERB has now been discontinued; however, unpaid carers are eligible for the Canada Recovery Care Benefit (CRCB). CRCB provides income support to employed and self-employed individuals who are unable to work because they must care for their child under 12 years old or a family member who needs supervised care (https://www.canada.ca/en/services/benefits/ei/cerb-application.html#eligible; https://www.canada.ca/en/revenue-agency/services/benefits/recovery-caregiving-benefit.html).

As part of British Columbia’s emergency COVID-19 response plan, BC doubled 2020 funding for Family Caregivers of British Columbia to $1 million CAD. Family Caregivers of British Columbia is a non-for-profit organization that provides support for over 1 million unpaid carers (https://news.gov.bc.ca/releases/2020HLTH0141-000763).

Last updated: November 6th, 2021

There is a dedicated page on Danish Health Authority website  on how to manage COVID-19 among older populations in the home (https://www.sst.dk/da/corona/Information-til-fagpersoner/Sundheds–og-plejesektoren).

Overall, the informal carers have not been supported systematically; there are some cash benefits for carers, but by far the majority of LTC offers are directed at the claimants and not their relatives. However, there are offers of respite care (source: Publications catalogue – Employment, Social Affairs & Inclusion – European Commission (europa.eu).

Last updated: September 16th, 2021

Section 5.5 of the LTC Covid Report (page 12) provides a review of the work of Carers Finland, an organization that during the pandemic has collected information and testimonials from informal carers. Key themes from their research include heightened loneliness and isolation; decreased physical and mental functioning; emotional and logistical struggles in accessing external services; inadequate means of support (e.g. internet calls) (https://ltccovid.org/wp-content/uploads/2020/06/ltccovid-country-reports_Finland_120620.pdf).

Formal measures for support remain unclear.  As in other countries, NGO services, such as the member associations of Carers Finland provided remote services over the phone or through virtual meetings (https://ltccovid.org/wp-content/uploads/2020/06/ltccovid-country-reports_Finland_120620.pdf).

Last updated: September 7th, 2021

The Federal Government has issued support measures for unpaid carers during the COVID-19 pandemic (so far valid until 31 March 2021). These include ‘Care Support Payment’, which covers carers pay for up to 20 working days when they need to cover care during the pandemic or if they need to provide care that cannot be replaced by someone else. Working carers can also take ‘family care time’ if they have not used the maximum number of days. Family carers can request an interest free loan or to get loss of income during the pandemic recognised in repayment scheduling (Bundesministerium für Familie, Senioren, Frauen und Jugend, 2021).

The German Society of Nursing Science has developed new guidance on how domiciliary carers can support unpaid carers, this includes offering training on hygiene measures for family carers; informing family carers about available support structures and services; family carers to receive psychosocial support or to be provided with information about psychosocial support (https://www.awmf.org/uploads/tx_szleitlinien/184-002l_S1_Haeusliche-Versorgung-soziale-Teilhabe-Lebensqualitaet-bei-Menschen-mit-Pflegebedarf-COVID19-Pandemie_2020-12.pdf).

In Bavaria unpaid carers receive three FFP2 masks for free through their local government (Pflegeberatung.de, 2022).

References

Bundesministerium für Familie, Senioren, Frauen und Jugend (2021) Informationen für pflegende Angehörige. Available at: https://www.bmfsfj.de/bmfsfj/themen/corona-pandemie/informationen-fuer-pflegende-angehoerige (Accessed 11 February 2022).

Pflegeberatung.de (2022) Aktuelle Regelungen in der Pflege im Kontext von Corona. Available at: https://www.pflegeberatung.de/corona (Accessed 11 February 2022).

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

Organisations in India provide COVID-19 information for people with disabilities/LTC needs and their family carers. One organisation has developed an app to enable family carers to access expert advice. The Ministry of Health and Family Welfare provided online medication, yoga videos, advice on mental health support and a psychosocial behavioural helpline. Some states have set up dedicated services (helplines) and organisations have implemented virtual interventions. Guidelines by the Ministry of Social Justice and Empowerment state that family carers should be issued with travel passes (https://ltccovid.org/wp-content/uploads/2020/05/LTC-COVID-situation-in-India-30th-May.pdf).

Last updated: September 7th, 2021

Some social assistance programme were put in place during the COVID-19 pandemic, from which unpaid carers may have benefited. The Ministry of Social Affairs plans to increase the number of social security beneficiary programmes for older people (https://ltccovid.org/wp-content/uploads/2020/06/The-COVID-19-Long-Term-Care-situation-in-Indonesia-30-May-1.pdf).

Last updated: September 7th, 2021

A number of organisations in Ireland developed material, helplines and remote interventions to support family carers during the pandemic. Those qualifying for Carers Allowance will receive payments. Those who have lost their jobs can receive the Pandemic Unemployment Payment in addition to their Carers Allowance (https://ltccovid.org/wp-content/uploads/2020/06/International-measures-to-support-unpaid-carers-in-manage-the-COVID19-situation-17-June.pdf).

Last updated: September 7th, 2021

Information on support to unpaid (family) carers is unclear beyond the stipend received by all citizens and increased accessibility of unemployment benefits; an updated January 2021 guidelines document is available, which lists counseling services and call centers as primary measures for support.

The Ministry of Health also provided a guide for carers of people with dementia.

Last updated: December 5th, 2021

Japan has offered payments to all citizens as part of their economic stimulus packages, which may help offset some of the economic burden of care (AHWIN, 2020 in https://ageingasia.org/wp-content/uploads/2020/12/COVID_LTC_Report-Final-20-November-2020.pdf).

Last updated: September 7th, 2021

The Dutch government issued guidelines for informal carers. These guidelines include advice on hygiene standards and guidelines on how a caregiver should act if the person they provide care to develops symptoms of COVID-19 (https://ltccovid.org/wp-content/uploads/2020/05/COVID19-Long-Term-Care-situation-in-the-Netherlands-25-May-2020-1.pdf).

All family care caregivers that experience symptoms of COVID-19 have been able to get tested since 18 May 2020. In addition, family carers could access free PPE from 19 May 2020 if they support vulnerable people (70 years and older, with chronic conditions) who experience symptoms of COVID-19 and where personal care (with less than 1.5 metres distance) is required (https://ltccovid.org/wp-content/uploads/2020/05/COVID19-Long-Term-Care-situation-in-the-Netherlands-25-May-2020-1.pdf).

Municipalities have set up support desks to help distressed informal carers and the role of the General Practitioner (GP) to support has been emphasised (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).

Guidelines advise that GPs play an important role in supporting unpaid carers.

Last updated: September 7th, 2021

Unpaid carers in New Zealand can get a carer support subsidy from the Ministry of Health. The funding guidelines were relaxed to support carers during Alert levels 2-4, this included expanding the guidelines of what could be purchased, allowing a resident family member to be paid and support with finding a support worker (https://ltccovid.org/wp-content/uploads/2020/08/The-LTC-COVID-situation-in-New-Zealand-9-August-2020.pdf).

Last updated: September 7th, 2021

Family members were paid to provide the necessary care to older adults care at the same wage as professional caregivers after they receive two hours of training (https://ageingasia.org/wp-content/uploads/2020/12/COVID_LTC_Report-Final-20-November-2020.pdf).

Last updated: September 7th, 2021

The Mecudia plan (initiated 18 March 2020) enables people with work and care responsibilities to request an adjustment or reduction of their working arrangement to support the person with care needs. In addition, people who are financially vulnerable, including unpaid carers who experience a substantial loss of income can apply for a mortgage debt moratorium. Some municipal governments have also produced information material, helplines or phone counselling. NGOs have also provided information and support (https://ltccovid.org/wp-content/uploads/2020/10/LTCcovid-Spain-country-report-28-May-1.pdf). In addition, resources to support unpaid carers have been developed (https://ltccovid.org/wp-content/uploads/2020/06/International-measures-to-support-unpaid-carers-in-manage-the-COVID19-situation-17-June.pdf).

Last updated: September 7th, 2021

There were no specific measures to support unpaid carers, but there is evidence that the burden of care increased during pandemic for unpaid carers based on the analysis by Stockholm Gerontology Research Centre (paper is yet to be published by Gerontology Institute, communication from Lennarth Johansson, 27/01/2021).

The Corona Commission highlights some general financial measures which could well benefit unpaid carers (although these were not aimed specifically at unpaid carers) e.g. financial compensation to people in certain risk groups who have entirely or partly ceased undertaking paid work to avoid being infected with COVID-19.

Last updated: September 7th, 2021

Very few measures were initially announced to support unpaid carers. These increased over time and included specific guidance for unpaid carers, enabling those experiencing symptoms to be tested and providing guidance related to the unpaid carer role (Source: DHSC: Guidance for unpaid carers). Additionally, the government provided funding for the Carers UK helpline.

A major source of support for many working unpaid carers was the furlough scheme, which enabled them to maintain up to 80% of their income (Lorenz-Dant, 2020). During the vaccine rollout, unpaid carers were included in priority group 6 (Source: DHSC: Priority groups for coronavirus vaccination).

References:

Lorenz-Dant, K. (2020) International examples of measures to support unpaid carers during the COVID-19 pandemic. Report on LTCcovid.org 

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

The Adult social care – winter preparedness plan: 2021-22 sets out the measures that will be applied across the adult social care sector to meet the challenges over the winter 2021 – 2022. This includes an additional £400,000 into the Time to Live Fund to provide micro-grants to give unpaid carers a break. Local delivery will be supported by funding and working with partners including the Carer Centre Manager Network and Scottish Young Carer Services Alliance. Additionally, £1.4million is being provided to deliver the ScotSpirit Holiday Voucher Scheme which will help low income families, unpaid carers, and disadvantaged young people to enjoy a break over the winter (Source: gov.scot).

Last updated: March 24th, 2022   Contributors: Jenni Burton  |  David Henderson  |  David Bell  |  Elizabeth Lemmon  |  

Policy measures:

During the pandemic Medicaid allowed more people with care needs to hire family members as paid carers.

Home-based tele-health has been expanded and the Care Act requires a caregiver to be registered within people’s health records.

Some US guidance includes unpaid carers in the vaccination priority list.

Care Ecosystem programmes: adapting to support unpaid carers and people with dementia

Qualitative interviews with professionals supporting people living with dementia and their family carers in four US states with established Care Ecoystem programmes 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. Staff from the existing However, this study also showed how existing staff  (mainly Care Team Navigators) 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 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.