The Scottish Dementia Working Group (SDWG) is a campaigning group of people with dementia. Since 2001, the SDWG has been at the forefront of a growing movement towards people with dementia influencing decisions about their lives.
The SDWG research sub-group, established in August 2013, provides a forum in which the large volume of requests coming into the SDWG to collaborate in research can be considered. The research sub-group also ensures that people with dementia are meaningfully involved in research.
Between September and December 2013, supported by Sarah Keyes and Nick Jenkins from The University of Edinburgh, the SDWG research sub-group developed these core principles for involving people with dementia in research.
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Accessible PDF of Core Principles
The experiences and views expressed and the process through which the principles were co-created provide a site for dialogue through which everyone involved in dementia research should strive to develop and maintain a dementia friendly research community.
This mandate from an established dementia campaigning group challenges researchers across all disciplines to re-consider not only how people with dementia are involved and valued in research but also the future of knowledge construction in dementia research.
I am a researcher in Canada. Thank you so much for developing the Core principles for involving people with dementia in research document. It is very useful and so wonderful that you took the time and effort to put it together to help researchers. thank you, Mary