Transitions‐Related Support for Ageing Family Carers of Older People With Intellectual Disabilities Who Convey Behaviours That Challenge Others: A Systematic Rapid Scoping Review

Jordan, J ORCID: https://orcid.org/0000-0003-3308-9104, Larkin, M, Tilley, E ORCID: https://orcid.org/0000-0003-4665-394X, Vseteckova, J, Ryan, S ORCID: https://orcid.org/0000-0002-7406-1610 and Wallace, L (2025) Transitions‐Related Support for Ageing Family Carers of Older People With Intellectual Disabilities Who Convey Behaviours That Challenge Others: A Systematic Rapid Scoping Review. Journal of Applied Research in Intellectual Disabilities, 38 (1). e13322. ISSN 1360-2322

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Abstract

Background: There are increasing numbers of ageing family carers of older (40+) adults with intellectual disabilities who convey behaviours that challenge others in the UK. It is important to understand the needs and experiences of these carers as they support their older family member to transition to different care contexts. Method: A rapid scoping review of published and unpublished literature, using systematic methods of data searching, extraction and analysis. Results: Exhaustion, reluctance to burden others, distrust of alternative living arrangements and deep interpersonal ties with their family member with intellectual disabilities mean ageing carers can avoid planning ahead. There is a lack of appropriate information, support and professional advice available. Developing trust in services is critical, as is a ‘whole family’ approach to planning. Conclusions: More research is vital to understand the support ageing carers receive to make choices, and how it meets their needs.