Aging: Reducing stigma and promoting inclusion as part of the process
UBC researchers are collaborating with community partners like Paul’s Club, a social and recreational day program for men and women living with dementia. supplied
By 2056, 25 per cent of Canada’s population is expected to be 65 years of age and older, compared to 14 per cent in 2006. This rapid demographic shift raises questions about how Canadians can sustain a high quality of life and active social engagement as they age.
In search of well-rounded answers, leading researchers are “knocking down borders to engage patients in partnerships that look at solutions that directly concern them,” says Alison Phinney, professor and associate director of graduate programs at the UBC School of Nursing and co-director of the Centre for Research on Personhood in Dementia. “It is important that our leaders in the field think of older people as our partners rather than patients or recipients of care, and to ask, ‘How can we work together with this growing population to find a way forward?’”
A project looking to advance social citizenship for people with dementia brings together experts from UBC, Simon Fraser University and Lakehead University in Thunder Bay, Ont., and a wide range of community partners, she explains. “We look at how community-based programming can be used to help people with dementia remain active and engaged, but we see the idea of reducing stigma and promoting social inclusion not only as an outcome of the project but also as part of the process.”
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The goal of building age-friendly and dementia-friendly communities is driven by conceptual and ethical principles that demand that our process is also inclusive. ”
To meet this goal, the research is conducted in close collaboration with a group of key stakeholders: people who are living with dementia, says Dr. Phinney. “The goal of building age-friendly and dementia-friendly communities is driven by conceptual and ethical principles that demand that our process is also inclusive.
“Rather than thinking that we have some good ideas that we would like communities to apply, we are working with communities, community groups and people living with dementia and asking them to tell us what it takes.”
Partnerships allow researchers to tap into collective wisdom and expertise to answer questions like, “What can be useful? How can we translate ideas into impact? Where are the challenges and how can we surmount them?” says Dr. Phinney. “Communities are figuring this out, often by trial and error, since they don’t have the resources to share their findings. The project is about surfacing wisdom that already exists and ensuring that it’s grounded in the experiences, needs and desires of people living with dementia.”
From defining the concept of social citizenship based on the perspectives of people with dementia, the community-based action research project is envisioned to inform a framework for developing and testing community strategies.
“Ultimately, we hope to come up with approaches and guidelines that can be adapted for use in different contexts,” says Dr. Phinney.
Yet the common element will be that the research is not done “on behalf of people with dementia, but with the smart advice from the people who perhaps know best,” she says. “At a time when people are diagnosed with dementia earlier and they live longer, there is a growing number of advocates from that community expecting a seat at the table.”
While people with dementia may have trouble sharing their ideas or getting to meetings, project partners are determined to find a way to overcome such barriers, she says, adding that the commitment to inclusion and community engagement is also something that students and graduates of the UBC School of Nursing will be familiar with. This approach also strongly resonates with health-care professionals pursuing a Master of Health Leadership and Policy in Seniors Care at UBC, since it allows them to design, deliver and lead comprehensive care and services for seniors in a range of community and organizational settings.
“This is an important theme for our future leaders,” says Dr. Phinney. “Any of us, as we get older and more frail or have some impairment, we want to maintain our social connections and participate in our communities. The project is about modelling a way of getting there together.”
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