The experiences of caring for someone with dementia and a learning disability: A Systematic Review

Hughes, Michelle, Hanna, Kerry ORCID: 0000-0001-7357-7749, Wiles, A, Taylor, Ellie and Giebel, Clarissa ORCID: 0000-0002-0746-0566 (2024) The experiences of caring for someone with dementia and a learning disability: A Systematic Review Dementia: the international journal of social research and practice, 23 (5). pp. 817-849. ISSN 1471-3012, 1741-2684

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Abstract

Background: The life expectancy of people with a learning disability is increasing and with this comes a greater risk of developing dementia. Dementia poses new challenges for both family and formal learning disability carers as they try to support dementia’s progressive nature and quality of life for their care recipient. This qualitative systematic review explores the evidence base of family and formal carers’ experiences and needs of caring for someone with both a learning disability and dementia. Methods: Six electronic databases (PubMed, PsycINFO, Cochrane Library, Prospero, Scopus, CINAHL), were searched in May 2022, utilising a predefined search strategy. Thirteen papers fulfilled inclusion criteria and were included in in the review. Results: Thematic synthesis was used to explore and synthesise the qualitative findings of the studies. Four conceptual themes were identified following analysis: Knowledge and skills, Accessing support, Repercussions of dementia for carers, Influences of continuity of caring role. Conclusion: There are significant training and educational needs for all carers who support the dual diagnosis of dementia and learning disability. Differences between family and formal carers relate to the organisational support and process available to formal carers. Parity across services combined with sufficiently trained carers may support dementia diagnosis and improve quality of care provided. Further research is needed to address environmental, and economic barriers carers face to facilitate ageing in place for their care recipients.

Item Type:	Article
Uncontrolled Keywords:	dementia, learning disabilities, workforce, caregiver
Divisions:	Faculty of Health & Life Sciences Faculty of Health & Life Sciences > Inst. Population Health
Depositing User:	Symplectic Admin
Date Deposited:	09 Jan 2024 11:46
Last Modified:	28 Feb 2026 16:27
DOI:	10.1177/14713012231225797
Related Websites:	Author Publisher
URI:	https://livrepository.liverpool.ac.uk/id/eprint/3177717
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