Almost 20 years ago, Brenda Hounman a woman living with dementia, responded to an advertisement posted by the Murray Alzheimer Research and Education Program’s (MAREP) Dr.Sherry Dupuis PhD, and thus began a fruitful collaboration. This episode describes how the relationship between “participant” and researcher has evolved, some of the results of the partnership and some lessons-learned that can help others replicate their experience.
Brenda and Sherry describe several of the projects that were created through the partnership between researchers and people with lived experience. The first project Brenda and Sherry worked on was The Changing Melody https://the-ria.ca/resources/a-changing-melody/. It was a ground-breaking forum where people living with dementia and care partners shared experiences and for many, it was the first time they spoke openly about how dementia has affected them.
Brenda initiated the BY US FOR US guides https://the-ria.ca/resources/by-us-for-us-guides/ that Dr. Dupuis and MAREP supported and continue to support two decades later. A 15th guide is about to be released. Sherry and Brenda also discussed the Living Well with Dementia Project that worked on filling some of the information gaps people experience when diagnosed with dementia. https://uwaterloo.ca/living-well-with-dementia/care-and-support.
Initially, based on Participatory Action Research (PAR), the collaborations evolved in a way unique to people living with dementia which they refer to as “Authentic Partnerships”. You can read more about this in "Use of participatory action research approach to develop a self-management resource for persons living with dementia" https://journals.sagepub.com/doi/full/10.1177/1471301221997281
Dupuis and a colleague Dr.Carrie McAiney, PhD, have continued this line of research in a project Partnerships in Dementia Care that explores the possibilities of introducing authentic partnerships into long-term care settings. This is described at Authentic Partnerships | Partnerships in Dementia Care | University of Waterloo (uwaterloo.ca).
A listener to this episode can win a set of the guides donated by the Research Institute on Aging at UWaterloo by writing to firstname.lastname@example.org