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