Putting it into Practice

Title: Alzheimer Europe's position on involving people with dementia in research through PPI (patient and public involvement).
Author: Gove D, Diaz-Ponce A, Georges J, Moniz-Cook E, Mountain G, Chattat R, Øksnebjerg L, European Working Group of People with Dementia.
Date Published: 2018
Reference: Aging and Mental Health, 22(6):723-729.
Are service users or carers authors: Yes

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 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. PPI adds value by generating ideas for research, advising researchers and being directly involved in research activities. This position paper discusses: - planning involvement - establishing roles and responsibilities - training and support - managing input from people with dementia - recognising the contribution of people with dementia involved in research - promoting and protecting the rights and well-being of people with dementia - promoting an inclusive approach and the necessary infrastructure for PPI in dementia research.

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Categories: journal article
researchers
general principles of good practice
guidance/guidelines
involving seldom heard groups

Date Entered: 2019/01/18

Date Edited: 2019/01/18

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