Ageing family carers experiences of future planning for their adult family member with an intellectual disability living at home

Increased childhood survival of people with complex physical needs, health and medical technology advances, greater recognition and diagnosis of autism and increasing life expectancy of the world’s population have all contributed to advances and growth in the population of people with intellectual disability nationally and internationally. Today, the majority of ageing adults with an intellectual disability in Ireland are being cared for by their ageing family members at home. This changing profile has major implications for service planning; it points to an enduring high level of demand for full-time residential services, the need for support services for ageing caregivers, and services designed specifically to meet the needs of older people with intellectual disability. Therefore, this study explored ageing family carers experiences of future planning for their adult family member with an intellectual disability living at home. this qualitative research utilised an interpretative phenomenological approach to explore ageing carers experiences of future planning for their adult family members with an intellectual disability living at home. Semi-structured interviews were conducted with ten participants that were ageing aged 65years + caring for their adult child with an intellectual disability at home. Data analysis was facilitated by utilising Burnard’s (2011) method of thematic content analysis. Participants voices and interpretations provided important research findings which were presented in four themes; a life unforeseen, bearing the cross, reaching a decision and nearing the end. These findings were discussed in relation to national and international literature and recommendations for education, research, policy and service provision were offered. Overall, this research highlighted the importance of providing support and guidance to ageing carers caring for their adult family member with an intellectual disability at home. There is a need for a collaborative approach across services provided to people with intellectual disabilities and their families in Ireland and a requirement for leadership and support within the community in assuming a supportive role to ageing carers and their family members with a disability in their future planning process.