Age, disability and the need for a family dimension in long-term care

Persons with disabilities face a number of barriers in people’s attitudes, built environment and institutions which prevent their full and equal participation in all aspects of life. COFACE – FAMILIES EUROPE elaborates on why it is relevant to adopt a family perspective when we talk about long-term care.

Older persons with disabilities are often more affected by these obstacles to participation given their interlinks with age barriers. Age and disability are two factors that can lead older persons with disabilities to need long-term support for daily activities; in the 80% of cases, this support is given informally by a family member.

Administrators often consider older people and persons with disabilities as two separate target groups, but the lines are blurred as older people develop disability while ageing. According to the Academic Network of European Disability Experts, the proportion of people with disabilities aged 65+ is 54%, compared to 18% among persons aged 16 to 64.

From a family perspective, age and disability are also blurred since family carers support their family members requiring care or support based on their needs as an individual. The highest share of care is provided by women aged 50 or older, often experiencing themselves ageism and lack of social inclusion. When a family member needs long-term care, this brings significant changes in the family life; and when state support is lacking, the financial stability and well-being of all family members can be easily eroded.

COFACE Families Europe is thus calling for a more holistic approach to long-term care, reducing the fragmentation between the health and social sector, to ensure that all persons with care or support needs can access services in the community.

Our position paper on the family dimension of long-term care recommends that European and national authorities drive policy reforms in a more integrated and holistic way with a life-cycle approach tackling needs and rights of formal carers, family carers and persons with long-term care or support needs in the framework of a European Recommendation on Family and Informal carers.