Presentation by Sarah Keyes at the fourth ESRC funded seminar on participatory research with people with learning disabilities

1. Developing a participatory research
relationship with people with dementia
Dr Sarah E Keyes, School of Health in Social Science,
University of Edinburgh

2. 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!
MY MOST-LIKED FACEBOOK
POST OF 2013

3. 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)

4. 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 not
speak 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.

5. Two Reasons for the
SDWG Research Sub-group

6. research?

7. A Dementia-friendly
research community
Who
decides?
Whose
Priorities?
How do we
stay safe?

8. 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

9. Co-creating the core principles:
stage three
Keep to “dementia time”

10. Core principles for
involving people with
dementia in research
TheScottish Dementia
Working Group Research Sub-group

11. 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.abst
ract
Open access version:
http://www.research.ed.ac.uk/portal/files/15321580/Core_principles_for_invol
ving_people_with_dementia_in_research.pdf

12. 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?