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2019: Overcoming ethical challenges affecting the involvement of people with dementia in research

I believe my involvement in research saved my life following my diagnosis of dementia and I am passionate about public involvement.

Research ethics is a positive challenge; it forces us all , clinicians, academics and people affected by dementia, to think about dementia research in a critical and holistic manner. This paper by Alzheimer Europe is a timely response to that challenge.

I am immensely proud that the European Working Group of People with Dementia (EWGPWD) were key contributors to this work – in particular that our input allowed an improved understanding of a broader view of the benefit of research participation.

Research is about more than the topic being researched; it is about placing a value on our voice, realising that people with dementia have insights and worthwhile contributions. Research ethics are important but we must not get so concerned about ethics that we take an overly paternalistic view and exclude people living with dementia.

Researchers must understand that people living with dementia don’t simply want to answer questions, we would like to set the research question and to do that we must have robust and ethical public involvement.

I am particularly delighted to see the issues of diversity and inclusion being addressed in this paper. There are millions of people living with dementia throughout Europe; people living in rural areas with no transport, people living alone with no support to prepare for and travel to meetings; people who do not use email, or whose sight is poor and need support with documents; people who live in a country where they do not speak the language. And they have lost their voice. I hope that this paper will support researchers to help them  find their voice once again.

Alzheimer Europe is a leader in promoting a diverse dementia voice and this paper further supports that. Thank you to members of the ethics working group, chaired by Dianne Gove, for their work on this project and for drafting this paper, and to the members of the EWGPWD and the external advisors for their valuable input.

Helen Rochford-Brennan, Chair of the European Working Group of People with Dementia

On behalf of the European Working Group of People with Dementia



Last Updated: Wednesday 11 November 2020