"What's going to happen when we're gone?" Family caregiving capacity for older people with an intellectual disability in Ireland

Abstract

Background: Changing family sociodemographic factors, increased life expectancy for people with an intellectual disability, deinstitutionalization and policy prioritization of the family as the principal care provider, presents new challenges to care sustainability.

Method: A qualitative study design was employed, entailing focus groups and semistructured interviews, with purposive sampling via the parent study population of the Intellectual Disability Supplement to The Irish Longitudinal Database on Ageing.

Results: The traditional sociodemographic facilitators of family caregiving are in rapid decline. Families perceived limited support from services and limited future care options. Few future care plans have been formulated. A strong possibility exists of placement of older family members with an intellectual disability in out-of-family home care.

Conclusion: To anticipate and provide for quality care supports, there is a need to establish proactive initiatives, for both people with an intellectual disability and their families', to facilitate the early formation of long-term care plans.

Keywords: Family Care Planning; Intellectual Disability; Older People.