Alzheimer Europe's position on involving people with dementia in research through PPI (patient and public involvement)

Gove, Dianne; Diaz-Ponce, Ana; Georges, Jean; Moniz-Cook, Esme; Mountain, Gail A.; Chattat, Rabih; Øksnebjerg, Laila; European Working Group of People with Dementia

Faculty of Health and Social Care
PPI (patient and public involvement) ; People with dementia; Research; Position paper
2018

Journal article


Rights
© 2017 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License (http://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is not altered, transformed, or built upon in any way.
Abstract

This paper reflects Alzheimer Europe's position on PPI (patient and public involvement) in the context of dementia research and highlights some of the challenges and potential risks and benefits associated with such meaningful involvement. The paper was drafted by Alzheimer Europe in collaboration with members of INTERDEM and the European Working Group of People with Dementia. It has been formally adopted by the Board of Alzheimer Europe and endorsed by the Board of INTERDEM and by the JPND working group ‘Dementia Outcome Measures - Charting New Territory’.

Alzheimer Europe is keen to promote the involvement of people with dementia in research, not only as participants but also in the context of PPI, by generating ideas for research, advising researchers, being involved in consultations and being directly involved in research activities. This position paper is in keeping with this objective. Topics covered include, amongst others, planning involvement, establishing roles and responsibilities, training and support, managing information and input from PPI, recognising the contribution of people with dementia involved in research in this way, promoting and protecting the rights and well-being of people with dementia, training and support, and promoting an inclusive approach and the necessary infrastructure for PPI in dementia research.

Publisher
The University of Hull
Peer reviewed
Yes
Language
English
Extent
591 KB
Identifier
hull:15149

Journal

Journal title
Aging & mental health
Publication date
2018
Publisher
Taylor & Francis
DOI
10.1080/13607863.2017.1317334
ISSN (Print)
1360-7863
ISSN (Electronic)
1364-6915
Volume
22
Issue
6
Start page
723
End page
729
Notes

Copy of article first published in: Aging & mental health, 2017, v.22 issue 6.

Link
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