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. 2024 Jul;23(5):817-849.
doi: 10.1177/14713012231225797. Epub 2024 Jan 3.

The experiences of caring for someone with dementia and a learning disability: A qualitative systematic review

Michelle Hughes  1 , Kerry Hanna  2 , Akpevwoghene Wiles  1 , Ellie Taylor  3 , Clarissa Giebel  4
Affiliations

The experiences of caring for someone with dementia and a learning disability: A qualitative systematic review

Michelle Hughes et al. Dementia (London). 2024 Jul.

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.

Keywords: caregiver; dementia; learning disabilities; workforce.

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Conflict of interest statement

Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Figures

Figure 1.
Figure 1.
Prisma diagram depicting the screening process.
See this image and copyright information in PMC

References

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