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Members of the EWGPWD and Alzheimer Europe publish article reflecting on Patient and Public Involvement in research

Wednesday 08 January 2020

An article, entitled “Our reflections of Patient and Public Involvement in research as members of the European Working Group of People with Dementia”, has been published in Volume 19, Issue 1 of the journal Dementia. In 2017, Alzheimer Europe developed a position on Patient and Public Involvement, in collaboration with INTERDEM and the EWGPWD. In this article, Chris Roberts and Helen Rochford Brennan, who both have dementia, as well as Jayne Goodrick, Chris’s supporter, provide further reflection on three of the seven key issues addressed in the position paper, namely in relation to.

  • recognition and acknowledgement of the contribution made by people with dementia,
  • promoting and protecting the rights and well-being of people with dementia, and
  • training and support

The authors reflect on their personal and ongoing experience of PPI and how this relates to the position paper which they helped develop. They conclude that involving people with dementia and their supporters in dementia research is a win-win for everyone involved and that although a lot of progress has been made, certain areas need to be further explored in collaboration with people with dementia and their supporters.

For more information, contact Dianne Gove, Director for Projects:

The article can be found, here:

Dementia is an international peer-reviewed journal that acts as a forum for social research aiming to improve quality of life and care for people with dementia and their families.