Flipping Stigma in Dementia: Mobilizing Knowledge in a Participatory Action Research Study

The knowledge mobilization potential of Participatory Action Research (PAR) has not been explored in depth, particularly in the context of research involving people with dementia. As such, this paper explores how an Action Group of people living with dementia contributed to meaningful and innovative research outputs, and critically reflects on the processes that fostered effective engagement of people with dementia in a PAR project. The Flipping Stigma in Dementia project was a PAR study (2019–2023) focused on addressing dementia-related stigma. Central to the project was the co-creation of the Flipping Stigma on its Ear Toolkit, an online resource that offers first-hand accounts, strategies for combating dementia-related stigma, and educational materials. Knowledge mobilization extended beyond the toolkit through community presentations, conference sessions, and feedback meetings, where Action Group members took active roles in dissemination. Their advocacy efforts included the development of promotional materials, such as postcards and T-shirts, and partnerships with organizations to incorporate the toolkit into training programs. By fostering safe and inclusive spaces for collaboration, Action Group members were empowered to lead efforts that challenge stigma and inspire social change.