Article
Details
Citation
Jacobs P, Watchman K, Wilkinson H, Hoyle L & McGenily L (2022) Experiences of people with intellectual disability and dementia: A systematic review. Journal of Applied Research in Intellectual Disabilities. https://doi.org/10.1111/jar.13063
Abstract
Background
Dementia disproportionately affects people with intellectual disability. Most qualitative studies explore their experiences by utilising proxy-reports. A smaller number of studies illustrate the possibility of exploring perspectives directly from people with intellectual disability and dementia.
Method
This systematic review synthesised findings from existing studies (n =?8) that involve people with intellectual disability and dementia as participants to understand their experiences of dementia. Searches were conducted using CINAHL, PsychInfo and Social Services Abstracts.
Results
Findings include descriptions of changes in individual functioning, a narrowing of social worlds and of how people made sense of the changes despite often having no knowledge of their dementia diagnosis. Additionally, discussion focuses on how people's experiences are shaped by their environments.
Conclusion
The review recognises the complexities of speaking to people with intellectual disability about dementia, challenges views that people with intellectual and dementia cannot be involved in research and makes recommendations to support inclusion in future studies.
Keywords
dementia; intellectual disability; learning disability; qualitative; systematic review
Notes
Output Status: Forthcoming/Available Online
Journal
Journal of Applied Research in Intellectual Disabilities
Status | Early Online |
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Funders | |
Publication date online | 23/12/2022 |
Date accepted by journal | 24/11/2022 |
URL | |
Publisher | Wiley |
ISSN | 1360-2322 |
eISSN | 1468-3148 |
People (3)
Senior Lecturer in Nursing, Health Sciences Stirling
Research Fellow, Social Work
Professor, Health Sciences Stirling