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Appears in Collections:Faculty of Health Sciences and Sport Journal Articles
Peer Review Status: Refereed
Title: Experiences of people with intellectual disability and dementia: A systematic review
Author(s): Jacobs, Paula
Watchman, Karen
Wilkinson, Heather
Hoyle, Louise
McGenily, Laura
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Keywords: dementia
intellectual disability
learning disability
systematic review
Issue Date: 23-Dec-2022
Date Deposited: 27-Dec-2022
Citation: Jacobs P, Watchman K, Wilkinson H, Hoyle L & McGenily L (2022) Experiences of people with intellectual disability and dementia: A systematic review. <i>Journal of Applied Research in Intellectual Disabilities</i>.
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.
DOI Link: 10.1111/jar.13063
Rights: © 2022 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.
Notes: Output Status: Forthcoming/Available Online
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