Informal care networks of older adults with an intellectual disability

This report describes a study of people with intellectual disability over the age of 40 years who were still living with relatives in the family home. Previous studies have revealed that there exist different types of social networks and that identifying network type and available informal support is important for planning effective service delivery. The main focus of this investigation was on the structure and characteristics of informal support networks and the pattern of support that occurred. The sample consisted of 32 individuals with an intellectual disability, mean age 46.7 years. Overall, the study found that carers received little support from other family members and the wider community in performing personal and household care tasks. The informal networks of older adults with learning disability operated on a hierarchical basis with primary family members, particularly parents and siblings, providing the bulk of informal support. Other relatives and friends and neighbours played a less significant role in informal care networks. The study also draws attention to the increasing number of elderly carers who, often single-handedly, provide the primary sources of care for older adults with learning disability. Contrary to what might be expected, it was found that the size of an individual's network, in terms of numbers of localised kin members, was not related to the amount of support the main carer received from others.