Global study explores grassroots community solutions, for meaningful lives
A pottery making workshop for people with dementia, led by the Dementia Co-Creation Academy, a community group in BC participating in the research project.
Photo: Samantha Pineda Sierra, New Westminster, BC
As a young nurse, Alison Phinney was excited about her first job in an acute care psychiatric hospital in Montréal. She didn’t know then that the patients she would meet would fuel a lifelong passion.
“On my ward, there were patients with dementia, often dismissed due to ‘behavioural problems’,” Phinney recalls. “I immediately felt a connection with them. I wanted to make their lives more liveable, and understand what it’s like to live with dementia, and what defines a good day for them.”
Urban Abbey Dementia Café: A Place to Belong, a community group in Thunder Bay participating in the research project.
Photo: Andréa Monteiro, Thunder Bay, Ontario
That curiosity led Phinney to pursue her PhD in nursing. Now, decades later, Phinney is an international expert in dementia and aging, director of the Centre for Research on Personhood in Dementia at The University of British Columbia (UBC), and a professor and associate director of faculty development at the UBC School of Nursing.
Phinney has dedicated her career to advocating for people living with dementia.
“We can never forget how hard it is to live with dementia and how challenging it is for loved ones who care for them,” says Phinney.
A community approach with an international lens
As part of a three-country Open Research Area (ORA) project, Phinney is the Canadian lead, funded by SSHRC. She works on the project alongside principal investigator Richard Ward in the United Kingdom, and Reimer Gronemeyer in Germany, to explore global challenges in dementia care. Their study, Centring The Lived Experience Of Dementia Within Policy, Practice And Community Development, aims to identify gaps in care across social and health-care systems, and imagine new solutions.
"Dementia is a growing concern internationally, because our population is aging," Phinney explains.
With more than 55 million people currently affected by the disease worldwide, that figure is expected to rise to 82 million by 2030. Dementia impairs memory, thinking and daily function, and requires urgent care solutions.
“Until now, work on dementia has been siloed,” says Phinney, “with each part of the system thinking it’s someone else’s problem. International collaboration allows us to learn from each other and create a platform for action.”
Listening to lived experiences
The research is being conducted at six sites worldwide: two communities in Germany, one in Scotland, another in southeast London, and two in Canada—in Vancouver and Thunder Bay. Using methods like “walking interviews” and “time-use diaries,” the researchers engage with people living with dementia to highlight their daily experiences and struggles.
Smell the roses—photo from a walking interview in Scotland.
Photo: Mary Njoki, Stirling, Scotland
“We don’t conduct ‘traditional interviews’; instead we walk with them, observe, and reflect on their lives in real-time,” says Phinney. “We’re trying to understand what they want, hope for, and need at home.”
The study also includes policy interviews with decision-makers, community leaders and health-care practitioners, to understand systemic challenges in dementia care.
Shifting the focus from cure to care and participation
Early findings highlight the need to shift focus from finding a cure to addressing dementia as a societal challenge.
“Most funding goes toward a cure, but we should focus on care and participation, keeping people at home longer, supporting them in the community, helping them stay active and involved,” Phinney notes. “Many solutions exist at the grassroots level.”
The study has discovered examples of “dementia-friendly” community initiatives already happening in places like Kitsilano Neighbourhood House in Vancouver, which pairs people living with dementia with trained student volunteers, to become “dementia buddies”. The volunteers help participants continue to do the day-to-day activities, sports and crafts they did before developing dementia. Another program, called the Dementia Co-Creation Academy, hosts a series of workshops that help people with dementia learn a new arts-based activity.
“These local initiatives give people purpose, reduce depression and boost confidence. They can be implemented globally fairly easily,” says Phinney. “But no national or international system has managed to invest and explore integrated ways to close the gaps in dementia care.”
Phinney hopes the ORA study, expected to wrap up in 2026, will guide policy decisions and help end the stigma surrounding dementia.
“We need to see people with dementia as valuable members of the community,” says Phinney. “My goal is to try to find ways for people with dementia to have more good days than bad days, while living at home and participating in the community. That’s a hard task, and it’s complicated, but that’s why our research matters.”