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Core Principles for Involving People with Dementia in Research


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 six core principles for involving people with dementia in research. They hope that the principles will have much wider application and impact than their use by the SDWG.

These core principles challenge researchers across all disciplines to reconsider not only how people with dementia are involved and valued in research, but also how knowledge is constructed in dementia research.

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