Dr Sarah E Keyes, School of Health in Social Science, University of Edinburgh

“If you could research anything, or see research done into anything, what

would it be……”

Developing a participatory research relationship with people with dementia

MY MOST-LIKED FACEBOOK POST OF

2013

Had my dream day at work today - we went to meet with a group of people with

dementia and ask them what THEY would like to research or see research done into. We now have our research agenda for at

least the next 20 years!

Why we needed the Core Principles

Researchers need to do things differently. Often, too much jargon is used. Results of research do not always

get back to people with dementia and do not always result in improvements in their lives.

Research should always: 1. Benefit people with dementia and lead to

action; 2. Be communicated back to people with dementia in ways that are easy to understand

(Jenkins and Keyes 2013: Report to the Scottish Dementia Working Group)

Coming here was one of the best things I ever did, because all these people were in the same boat as me doing something useful and that is probably why I still come, because I am doingsomething useful.(David, SDWG member)

I learned to become a speaker, and by doing that I Managed to empower myself to go out and empower other people and teach them how to handle people with dementia, and by doing that I felt I was speaking for people who could notspeak for themselves …In 2005, I had the opportunity to do a presentation at the Alzheimer’s Disease International Conference in Istanbul. That was a great experience and really gave me confidence. (Ross, SDWG member)

Weaks, D., Wilkinson, H., Houston, A. and McKillop, J. (2012) Perspectives on Ageing with Dementia. York: JRF.

The SDWG Research Sub-Group

Two Reasons for the SDWG Research Sub-

group

Co-creating the core principles: stage one

What makes

good research?

What needs to be changed for people with dementia to be

more involved in research? research?

What makes bad research?

Co-creating the core principles: stage two

A Dementia-friendly research community

Who decides?

Whose Priorities?

How do we stay safe?

Co-creating the core principles: stage three

I never heard what happened

Knowledge comes from all sorts of places……..

We need to be in a safe and secure environment

Co-creating the core principles: stage three

Keep it simple……less is best

Why should anyone be let loose, who hasn’t had the training…..?

Keep to “dementia time”

Co-creating the core principles: stage four

Core principles for

involving people

with dementia in

research 

The Scottish Dementia

Working Group Research Sub-group

To access the core principles, go to:http://coreprinciplesdementia.files.wordpress.com/2014/05/dementia-a5-booklet.pdf

Or:http://dem.sagepub.com/content/early/2014/05/12/1471301214533255.abstract

Open access version: http://www.research.ed.ac.uk/portal/files/15321580/Core_principles_for_involving_people_with_dementia_in_research.pdf

The Principles

For Discussion

As we take these principles forward, what can we learn from other groups who have been

involved in participatory research for longer than

we have?

Thanks……