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200Future Care Planning Amongst Parent and Sibling Carers with Ageing Family Member with an Intellectual Disability

Background: Multiple socio-economic factors are impacting on the future care for older people with an intellectual disability (ID) in contemporary Ireland, specifically a reduced reliance on institutional settings, the increased life expectancy for people with an ID, and a social policy prioritisation of the ‘family’ as the principal care context. This paper explores the extent and nature of future care planning amongst parent and sibling carers with their ageing family member with an ID. Methods: Situated within the parent study population of IDS TILDA (Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing), a qualitative study design was employed with a purposive sample of parent and sibling carers (n = 17) of older people with an ID. Results: While sustained on a bedrock of ‘love labour’, future family caregiving capacity is perceived by family carers to be rapidly diminishing. Future care planning is an emotive and highly stressful topic. Family carers, older people with an ID and service providers appear collectively reluctant to proactively engage in future care planning. Few carers and older people with an ID have definitively formulated future care plans, and where plans do exist these are predominantly aspirational in nature. This has the potential to create poor outcomes including crisis care management and inappropriate placement. Conclusion: People with an ID, their families and service providers would benefit from future care planning. The development of a model and process for such planning is needed. However, the success of future care planning is premised on the existence of appropriate care options which firstly prolong and enhance family caregiving capacity, whilst also providing care options where care within the family is no longer feasible.