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Dementia (London). 2018 Nov;17(8):944-975. doi: 10.1177/1471301218789292.

Patient engagement in research related to dementia: A scoping review.

Author information

1
Toronto Rehabilitation Institute - University Health Network, Toronto, Canada.
2
Oslo Metropolitan University, Oslo, Norway.
3
Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Canada.
4
Alzheimer's Society, UK; NIHR Clinical Research Network South London, Guy's Hospital, London, UK.
5
Ontario Dementia Advisory Group, Southampton, Canada.
6
Ontario Dementia Advisory Group, London, Canada.
7
Geriatric Medicine, Nova Scotia Health Authority / Dalhousie University, Halifax, Canada; Canadian Consortium on Neurodegeneration in Aging.
8
Toronto Rehabilitation Institute - University Health Network, Toronto, Canada; Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Canada; Canadian Consortium on Neurodegeneration in Aging.

Abstract

Patient 'engagement' or 'involvement' in health research broadly refers to including people with lived experience (i.e. individuals with personal experience of a health issue and their friends, family and caregivers or carers) in the research process. Although previous reviews have systematically summarized approaches to patient engagement in research, it is unclear whether and how engagement activities have been implemented or adapted for research related to dementia. We conducted a scoping review to describe the extent and nature of patient engagement approaches that have been used to involve persons with dementia and their care partners in research. We then summarized the reported barriers, enablers, and impacts of this engagement. Fifty-four research articles were included in the review and almost all were published after 2010. Persons with dementia and their care partners have been engaged in diverse phases of the research process. The majority of engagement involved both persons with dementia and care partners. Barriers and enablers to engagement included those identified for general patient engagement in research, but some more specific to engaging persons with dementia and their care partners were also reported. Very few studies assessed the impact of patient engagement. While the arguments for patient engagement in research are compelling, research to demonstrate the impact - on the research process and outcomes as well as on persons with dementia, care partners, researchers, research institutions and society - is still needed.

KEYWORDS:

dementia; patient engagement; scoping review

PMID:
30373460
DOI:
10.1177/1471301218789292

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