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