Towards a psychosocial theory of ageing with lifelong intellectual disability

Background: In the context of ageing populations in the western world, people with lifelong disability are among the fastest growing groups of older people. The largest sub-group of these are older people with intellectual disability. Yet little is known about how men and women with lifelong intellectual disability experience their later years. The purpose of the study is to develop a better apprehension of what ageing implies for those with lifelong intellectual disability, through direct consultation about psychosocial aspects of their lives. Method: This is a cross-sectional study carried out in a community based service for adults with moderate to severe intellectual disability in South West Ireland. It utilised a qualitative approach with a non-experimental, exploratory design. Participants (n=46) ranged in age from 36 to 76, with a mean age of 52. There were 24 males and 22 females. Participants lived in community residential houses (54%), with family (39%), in supported living (4%) and in a community hospital (2%). Fifty five interviews were undertaken. Data analysis drew on the principles of the Constructivist Grounded Theory Method. Results: The findings point to a life course theory of ageing and show that outcomes in ageing with lifelong intellectual disability are a function of both the ageing process and how age-related changes interface with the lived environment. Ageing well is linked to the quality and timing of supports received across five areas (1) self-determination (2)safety and security (3) social participation (4) loss and spirituality (5)coping patterns. A planning tool is developed from the findings and is used to identify individualised supports required across these five areas (Wellness in Ageing Tool – Intellectual Disability – WiAT-ID). Conclusions: (1) ageing experience cannot be set apart from whole of life experience (2) a five area support model, grounded in the experiential reality of actual lives, facilitates psychological and social wellness as men and women with lifelong intellectual disability grow old.