Successfully reported this slideshow.
We use your LinkedIn profile and activity data to personalize ads and to show you more relevant ads. You can change your ad preferences anytime.
Developing a participatory research 
relationship with people with dementia 
Dr Sarah E Keyes, School of Health in Social ...
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...
Researchers need to do things differently. Often, too 
much jargon is used. Results of research do not always 
get back to...
I learned to become a speaker, and by doing that I 
Managed to empower myself to go out and empower other people and 
teac...
Two Reasons for the 
SDWG Research Sub-group
research?
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…….. ...
Co-creating the core principles: 
stage three 
Keep to “dementia time”
Core principles for 
involving people with 
dementia in research 
TheScottish Dementia 
Working Group Research Sub-group
To access the core principles, go to: 
http://coreprinciplesdementia.files.wordpress.com/2014/05/dementia-a5- 
booklet.pdf...
As we take these principles 
forward, what can we learn 
from other groups who 
have been involved in 
participatory resea...
Developing a participatory research relationship with people with dementia
Upcoming SlideShare
Loading in …5
×

Developing a participatory research relationship with people with dementia

532 views

Published on

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

Published in: Education
  • Be the first to comment

  • Be the first to like this

Developing a participatory research relationship with people with dementia

  1. 1. Developing a participatory research relationship with people with dementia Dr Sarah E Keyes, School of Health in Social Science, University of Edinburgh
  2. 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. 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. 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. 5. Two Reasons for the SDWG Research Sub-group
  6. 6. research?
  7. 7. A Dementia-friendly research community Who decides? Whose Priorities? How do we stay safe?
  8. 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. 9. Co-creating the core principles: stage three Keep to “dementia time”
  10. 10. Core principles for involving people with dementia in research TheScottish Dementia Working Group Research Sub-group
  11. 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. 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?

×