Why was this project needed?
The voice of people living with dementia (PLwD) is paramount in dementia care research. It is increasingly common for PLwD to be involved in supporting funding applications, shaping study design, and contributing to dissemination (e.g., Miah et al., 2020). However, PLwD often become involved after researchers have already determined the overall topic or area of research. While various approaches, tools, and methods have been developed for setting priorities in health and social care research (e.g., Yoshida, 2016), few have been successfully applied in priority-setting work with people living with dementia.
How was the project carried out?
Twenty-two people living with dementia from Kent-based involvement groups have set research priorities. The approach for prioritising was developed by a smaller working group of four people living with dementia. While these activities were supported by volunteers, NHS staff and researchers, only people living with dementia had a say in what the research priorities should be.
You can see the structure of this project below:
Here are some pictures taken at the priority setting event by the East Kent Forget-Me-Nots group volunteer, originally shared on the group’s X account.
What are the research priorities for living with dementia in Kent?
Click on the picture below to download the 2-page summary.
Who funded this project?
The project was funded by the National Institute for Health and Care Research (NIHR) School for Social Care Research (SSCR). Applied Research Collaboration for Kent, Surrey and Sussex (ARC KSS) have also graciously permitted Dr Rasa Mikelyte to allocate some of her Dementia Research Fellowship time to this project.
The views expressed on this page and any documents within are those of the authors and not necessarily those of the NIHR SSCR, the NIHR or the Department of Health and Social Care.