Klara Lorenz Dant, Care Policy and Evaluation Centre, London School of Economics and Political Science

New report providing examples of policy and practice measures adopted internationally to support unpaid carers in caring for a person with long-term care needs during the COVID-19 pandemic. The information has been gathered, mostly, from the country reports on the COVID-19 long-term care situation published in this website.

Unpaid carers and the COVID-19 pandemic

Large numbers of people take on the responsibility to support a family member, friend or neighbour with care needs. In Germany, there are an estimated 4.7 million[1], in England there are around 5.4 million[2] and in the United States there are more than 41 million unpaid carers[3], to give just few examples. Already before the COVID-19 pandemic these family carers have carried large responsibility and received limited support. It is estimated that unpaid carers save the care system in England around £132 billion[4] and in the United States about $470 billion[5].

Around the world, the costs of care are disproportionately carried by women and people with low socio-economic status. In some countries, family carers can access in-kind and/or financial support, such as carer allowance or respite care. People with care needs can also get support interventions, such as paid domiciliary carers, respite care or day care, that may also benefit the unpaid carer by giving them a break from their care responsibilities. Government support for people with care needs and for their family carers is usually needs tested and often means tested.

The COVID-19 pandemic has led to many community services, such as day care centres, closing. This means that the care responsibility for people with long-term care needs, across countries, has been handed to family carers.

Carers UK have conducted an online survey among 5,000 current and former family carers during the COVID-19 pandemic. The results among family carers in the United Kingdom show that are large proportion (70%) are providing more care because of the pandemic. Around a third report that their care responsibility has increased due to closure of community services. Almost 40 per cent express concern around their financial situation and over half of survey respondents agreed that they ‘feel overwhelmed and […] worried that [they’re] […] going to burnout in the coming weeks.’[6]

The increased responsibility among unpaid carers, who are often frail themselves and in need of support, has also been reported in Germany. Particularly older spouse carers, who usually can get some support from other family members now find themselves mostly on their own as their family members are not allowed to visit. Some families in receipt of domiciliary care are concerned about the risk of the care worker or home health aide carrying the virus and have cancelled these services. [7][8] Similarly, families relying on migrant workers may find themselves without their usual support if the carer is unable to travel. [9] In Italy it has even been reported that family carers had difficulties purchasing food and medication for the people they support.[10]

Across countries, politicians have recognised the importance of family carers to sustain the support for people with care need. For example, the English Action Plan reads ‘we […] recognise the crucial role unpaid carers play, especially during this difficult period. They make an invaluable difference to the lives of the people they support and are an integral part of our health and social care system.’[11]

Yet, constructive policies that support family carers financially or that offer emergency support structures, should the family care become unable to care, are largely lacking. It appears that in most countries innovative support structures responding to the COVID-19 situation are frequently developed by the voluntary sector. Examples are virtual carer groups, support calls or guidance documents. However, these services are likely to be only available in small local areas and it is unclear how they will be sustained given the financial implications of the pandemic.[12] This is likely to be particularly problematic in low- and middle-income countries.[13]

Measures to support unpaid carers:

This report provides examples of policy and practice measures that have been adopted internationally to support unpaid carers in caring for a person with long-term care needs during the COVID-19 pandemic. This is a “live” document that will be updated regularly and expanded as more information becomes available. Comments, updates, suggestions and additional information are very welcome, please email k.h.lorenz@lse.ac.uk.

This first version simply aims to list the measures described in the current country reports, future versions will also seek to cover early evidence (as and when it becomes available) of the success and impact of those measures in supporting unpaid carers.

Key findings:

• The voluntary sector provides tangible support
• Several countries have developed guidance documents to support family carers
• There has been lack of recognition that unpaid carers need to buy goods for people with care needs
• Existing financial support mechanisms in some countries continue, but so far only Germany has increased financial support for family carers during the COVID-19 pandemic
• Emergency support structures in case the family carer becomes unable to provide care have been addressed in some countries
• Technological interventions, such as helplines and online carer groups but also the provision of tele-health have been newly established and/or expanded.

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[1] http://www.gbe-bund.de/gbe10/abrechnung.prc_abr_test_logon?p_uid=gast&p_aid=0&p_knoten=FID&p_sprache=D&p_suchstring=21301

[2] https://www.england.nhs.uk/commissioning/comm-carers/carer-facts/

[3] https://ltccovid.org/wp-content/uploads/2020/04/USA-LTC-COVID-situation-report-24-April-2020.pdf

[4] https://www.nice.org.uk/news/article/unpaid-carers-need-more-support-to-cope-with-financial-and-emotional-stress

[5] https://ltccovid.org/wp-content/uploads/2020/04/USA-LTC-COVID-situation-report-24-April-2020.pdf

[6]https://www.carersuk.org/images/News_and_campaigns/Behind_Closed_Doors_2020/Caring_behind_closed_doors_April20_pages_web_final.pdf

[7] https://ltccovid.org/wp-content/uploads/2020/04/USA-LTC-COVID-situation-report-24-April-2020.pdf

[8] https://ltccovid.org/wp-content/uploads/2020/05/Germany_LTC_COVID-19-6-May-2020.pdf

[9] https://www.ndr.de/nachrichten/schleswig-holstein/coronavirus/Pflege-zu-Hause-in-Corona-Zeiten-sehr-belastend,pflegendeangehoerige102.html

[10] https://ltccovid.org/wp-content/uploads/2020/05/LTC-COVID19-situation-in-Italy-30-April-2020.pdf

[11]https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/879639/covid-19-adult-social-care-action-plan.pdf

[12] https://ltccovid.org/wp-content/uploads/2020/04/USA-LTC-COVID-situation-report-24-April-2020.pdf

[13] https://ltccovid.org/2020/04/10/supporting-people-living-with-dementia-and-their-carers-in-low-and-middle-income-countries-during-covid-19/