A group of students from the Master’s in Social Work (MSW) program set out to find out what life was like for people with dementia. They called their project A Day in Their Shoes.
Two members of the group were already working in careers outside Carleton with people with dementia or persons with disabilities. One is a Registered Nurse and the other works as a manager in a long-term care home.
The project was part of a core course for the MSW that asked students to design a research project that would address an identified concern or need for one of several local community agencies.
The students chose to partner with the Alzheimer Society of Lanark, Leeds and Grenville which was looking for ways of inspiring “dementia-friendly communities” that would build upon the capacities and partnerships of local agencies and businesses in order to identify and better meet the needs of clients and consumers who may have dementia.
All five of the students, Jane Cunningham, Sandra Eckersley, Jordan MacLaren, Magda Pallejà Rosich and Jessica Steward, were passionate about “the lived experiences of people whose voices are seldom heard,” says Cunningham.
(L to R) Jessica Steward, Jordan MacLaren, Jane Cunningham, Sandra Eckersley and Magda Pallejà Rosich
When the Alzheimer Society partnered the students with five participants, “we arranged to audio or videotape them in outings of their choice,” says Cunningham. The outings ranged from grocery shopping, strolling through a mall, enjoying a coffee at Tim Hortons, to meeting at the local Curling Club.
She said that all of the participants provided very personal and detailed accounts of what it was like to disclose their diagnosis to others, how dementia fit with their overall experience of aging, their passionate connections to interest and activity-based communities, and the supports that enabled them to remain active.
The students found that the people they interviewed were generally satisfied with how they were treated by their rural communities.
“However, as our research progressed, we found we had to re-evaluate what community meant to people with dementia and what was truly important to their continued engagement within that community,” says Cunningham. “Community appeared to be more about the activities and social engagements for our participants than about the actual towns or neighbourhoods in which they lived.”
Cunningham says that all of the group members, “found this experience to be profoundly challenging and moving. We feel deeply honoured and grateful to our five participants for trusting us with their stories.”
“Sadly, our research is only one of a very small group of studies that directly asks people with dementia about their experiences in the community,” says Cunningham. “We would hope that further efforts are made to seek out the people at the heart of this discussion, and ensure they have a voice.”
