Alzheimer Europe's position on involving people with dementia in research through PPI (patient and public involvement)
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2017Author
Gove, Dianne M.Diaz-Ponce, A.
Georges, J.
Moniz-Cook, E.
Mountain, Gail
Chattat, R.
Øksnebjerg, L.
The European Working Group of People with Dementia
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© 2017 The Authors. This is an Open Access article distributed under the terms of the Creative Commons CC-BY license (http://creativecommons.org/licenses/by-nc-nd/4.0/)Peer-Reviewed
Yes
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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.Version
Published versionCitation
Gove D, Diaz-Ponce A, Georges J et al (2017) Alzheimer Europe’s position on involving people with dementia in research through PPI (patient and public involvement) Aging and Mental Health. In press.Link to Version of Record
https://doi.org/10.1080/13607863.2017.1317334Type
Articleae974a485f413a2113503eed53cd6c53
https://doi.org/10.1080/13607863.2017.1317334