When Parents Relinquish Care: Informal Support Networks of Older People with Intellectual Disability

This is the authors' abstract. We don't add key points for this paper.

Adults with intellectual disability lack the two key providers of informal support in later life, children and a spouse. This qualitative study examined the informal support networks of 62 older people with intellectual disability who had left parental care after mid‐life. Semi‐structured interviews with multiple informants were used to collect data about their supportive relationships. Informal networks were found to be small, dense and dominated by family members. A striking feature was the existence of a ‘key person’ who combined frequent contact, strong commitment and performance of a range of instrumental tasks. Key people were predominantly siblings but also included more distant relatives and friends. These findings indicate that, for this subgroup of older people, normative family roles such as ‘protector’ and ‘facilitator’ (Sussman, 1985) were fulfilled by informal network members despite the absence of spouses or children.