Authentic Partnerships Reshaping Dementia Care

A man self-identified as living with dementia stepped up to the microphone to share his views during a dementia-care open forum in 2008, and said to the gathered crowd of professionals, family members, and peers:

“You know, I’ve been having a problem with my doctor and I can’t help but think that he would do a better job if he had dementia.”

Underneath the laughter that followed were realizations that genuine, relational partnerships between people who live with dementia and their researchers and caregivers are necessary in order to better understand memory loss.

Authentic partnerships and Appreciative Inquiry are at the root of a dementia-care research project underway in Southern Ontario that could reshape approaches to elder care everywhere. 

Dr. Sherry Dupuis, director of the Murray Alzheimer Research and Education Program (MAREP) and one of two principal investigators in the study, says the goal is to create a viable framework for culture change, demonstrate its viability in long-term care and community settings, and share their findings and knowledge as broadly as possible.

As she considers the beginning of this project, she thinks back about 10 years ago recalling a call that came in to MAREP from a gentleman who had developed a tool to help combat some of his early-stage Alzheimer’s-related memory issues, and he wanted others to benefit from his experience.

For Sherry and her colleagues, a light went off and the idea of nurturing authentic partnerships among researchers, caregivers and practitioners, and people living with dementia and Alzheimer’s disease took shape.

“We thought, goodness, how many other people are finding ways to adjust or developing these strategies that others could learn from,” she recalls.

“Traditionally they’ve been pretty much excluded from decision making in research, particularly, but also in practice. There was this assumption that they no longer had any contributions to make, and I worked in practice in long-term care for a number of years and so really questioned that — I knew that wasn’t the case.”

The research team decided then to bring together a broad range of people connected to illnesses causing dementia to share stories, experiences, hopes and fears, and a series of six “Changing Melody Forums” shaped the beginning of the authentic partnerships concept.

Today the Partnerships in Dementia Care Alliance (PiDC) is the formal name for the research network delving into the current study taking place on the ground at four Culture Change Coalition Sites: Bloomington Cove Specialty Care; St. Elizabeth Health Care, South West Community Care Access Centre and a number of other community-based support services in Huron County; The Village of Wentworth Heights; and Yee Hong Centre for Geriatric Care.

Sherry and her colleague from McMaster University, Dr. Carrie McAiney, are leading a research team of 20, with the bulk of the funding flowing from Social Sciences and Humanities Research Council of Canada Community-University Research Alliance (CURA) grant, along with support from some of the more than 50 partners and organizations from across Canada.

More to come . . .

For more information on this project and other initiatives reshaping views on dementia, visit the MAREP website.

If you have questions or comments, please contact 800-294-0051, ext. 24, or e-mail kristian(at)axiomnews.ca.