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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; Chattat, Rabih; Øksnebjerg, Laila

Authors

Dianne Gove

Ana Diaz-Ponce

Jean Georges

Professor Esme Moniz-Cook E.D.Moniz-Cook@hull.ac.uk
Professor of Clinical Psychology of Ageing and Dementia Care Research/ Dementia Research Work Group Lead

Gail Mountain

Rabih Chattat

Laila Øksnebjerg



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.

Journal Article Type Article
Publication Date 2018
Journal Aging & Mental Health
Print ISSN 1360-7863
Electronic ISSN 1364-6915
Publisher Taylor & Francis (Routledge)
Peer Reviewed Peer Reviewed
Volume 22
Issue 6
Pages 723-729
APA6 Citation Gove, D., Diaz-Ponce, A., Georges, J., Moniz-Cook, E., Mountain, G., Chattat, R., & Øksnebjerg, L. (2018). Alzheimer Europe's position on involving people with dementia in research through PPI (patient and public involvement). Aging and Mental Health, 22(6), 723-729. https://doi.org/10.1080/13607863.2017.1317334
DOI https://doi.org/10.1080/13607863.2017.1317334
Keywords Phychiatric Mental Health; Gerontology; Geriatrics and Gerontology; Psychiatry and Mental health
Publisher URL https://www.tandfonline.com/doi/full/10.1080/13607863.2017.1317334
Copyright Statement © 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....icenses/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.
Additional Information Peer Review Statement: The publishing and review policy for this title is described in its Aims & Scope.; Aim & Scope: http://www.tandfonline....cope&journalCode=camh20

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Copyright Statement
© 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.



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