Members of COFACE Families Europe are greatly affected by current social and demographical changes, such as the growing ageing population, changing family structures, the situation of intergenerational families, or women’s increased participation in the labour market. Leaving family carers to provide all the care for dependent elderly people, or their relatives with disability, undermines the social inclusion (poverty risk), health (physical and/or mental exhaustion) and gender equality (most family carers are still women) of these families. However, we find the persistent existence of institutional care another threat, as they violate human rights and isolate people with care needs from their families and communities.

COFACE Disability has been advocating for many years for the recognition of family carers who provide care to their relatives with support needs, through a number of rights and social benefits. COFACE Disability published the European Charter for Family Carers, a reference tool that contributes to reconciling family and working life by allowing an informed choice by both the person with care needs and the carer, and provide them with adequate financial compensation, as well as social rights and benefits (pension, respite care etc.). According to the Charter’s definition, a ‘family carer is a person, woman or man, who is not a professional caregiver but by default or choice cares for a dependent person in his/her immediate circle’. The United Nations Convention on the Rights of Persons with Disabilities requires States Parties to take appropriate measures to prevent all forms of abuse or violence ‘by ensuring, inter alia, appropriate forms of gender- and age- sensitive assistance and support for persons with disabilities and their families and caregivers’. It is important to mention that caring role often falls on siblings too due to the lack of available public services. Therefore, we advocate for providing support to families with care needs by recognising the role that family carers play in society and economy, through the establishment of a legal status for family carers.

Meeting the needs of family carers through targeted measures contributes to the quality of care, or support and also helps to preserve a quality family life. This is done by safeguarding the physical and mental health of carers, strengthening the family ties between carers and the person with support needs, preventing financial impoverishment and enabling family carers to comply with the demands of both their family and working lives simultaneously. We also advocate for carers’ leave and flexible working conditions for family carers in order to support carers to stay in employment if they wish to do so, as this will reduce their risk of poverty and social exclusion. This must be complemented with the availability, affordability and accessibility of quality care and respite services. Respite for family carers is the response to a need for a break, allowing family carers to rest and relax. Respite is a way to prevent physical and mental exhaustion of family carers, and reassuring the quality of care provided to the person assisted.

As members of the European Expert Group on the Transition from Institutional to Community-based Care, COFACE Families Europe is advocating for the investment in community-based services that would provide person-centered support, instead of maintaining institutional care. We would like to highlight that long-term care should never take place in institutional settings, but in the form of home-based care, or community-based care. People with care needs should be provided with a flexible system in which they can use a combination of informal and formal care, and have access among other measures to a personal budget and personal assistance system.

Active ageing for family carers: Rapid and steady population ageing across Europe is raising new challenges and opportunities in social security and in maintaining long-term care systems. Increased life expectancy of persons with disabilities will also increase the role of family carers and community-based social services.

COFACE Key resources

COFACE Families Europe response to the public consultation: reviewing the Disability Strategy 2010-2020 (October 2019)

S.H.I.F.T. – A guide to shift towards meaningful inclusion of persons with disabilities and their families EN, FR, PT, ES (November 2019)

Long-term care: the family dimension. Key recommendations from COFACE Families Europe to shape long-term care systems for and with families (2018)

European Charter for Family Carers EN/FR (updated in March 2017)

‘Who cares? Study on the challenges and needs of family carers in Europe’ EN/FR (2017)

Active Ageing for Family Carers (2012)


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