ABOUT THE RESEARCH STUDY
Reducing Stigma and Promoting Social Inclusion:
Putting Social Citizenship into Practice
This was a four year project funded by the Canadian Institutes of Health Research (2019-2023). This was also a Participatory Action Research (PAR) study. PAR focuses on the co-creation of knowledge for the purpose of supporting social change.
This type of research is action-oriented and shifts the power relationships found in more traditional approaches to research.
PAR is conducted in partnership with a community of interest, with collaboration from the group throughout all stages of the study.
For this research study, the community of interest was an Action Group of people living with dementia. The action-oriented focus of this study was to reduce the stigma and discrimination that people with dementia experience on a regular basis.
The Action Group began meeting in June 2019, and through the study, this group included 16 members. This number ebbed and flowed over time and by the study’s conclusion, the Action Group included seven active members.
An important and distinctive aspect of the group was that only people with dementia were included, not care partners. Initially, the group met in person once a month. However, when the pandemic started, the group made a successful transition to ZOOM, and began meeting twice per month by request of group members.
Early Action Group meetings were focused on members talking about their experiences of dementia and on coming to agreement on specific actions to take. Once the toolkit was identified as a primary outcome of the study, subsequent meetings focused on development of toolkit content.
The creation of this toolkit was an explicitly iterative process, with Action Group members providing input and feedback throughout the entire process of development.
Members of the Action Group wanted to see the toolkit in other languages, and in 2024 funding was obtained to translate the toolkit into Chinese. This work was done in collaboration with a Knowledge Translation Group of people from the Chinese community in BC, including people living with dementia.
Action Group Members
Sherri Adams, Craig Burns, Lester Gierach, Lynn Jackson, Granville Johnson, Myrna Norman, Donna Wager, Rae, Tim Eng, Sarah King, Fred D.
Academic Research Team
Principle Investigators: Alison Phinney, Jim Mann, Deborah O'Connor
Co-Investigators: Habib Chaudhury, Gloria Puurveen, Elaine Wiersma
Research Staff: Ania Landy (2019-2021), Paulina Malcolm, Eric Macnaughton, Mariko Sakamoto
Web Designer: Samantha Pineda
