Living well with dementia.

At the Dementia Cafe in Thunder Bay (from left) Dr. Elaine Wiersma, Ruth Wilford, Jim Berry, Susan Bithrey, Carlina Marchese, and Dr. Nisha Sutherland at the Urban Abbey in Thunder Bay. The Dementia Café is a safe space for those living with dementia to meet and belong.

Research Project, Working Group, and Conference Help Those Living with Dementia in NW Ontario Live Well

BY GRAHAM STRONG

Accessing services can be difficult for people living with dementia and their care partners. That’s especially true for those living in rural regions across northern Ontario. As with many health care services, specialized services for dementia can dwindle in number and quality depending on geography and size of the community.

However, the issues go deeper than services. Those living with dementia can face stigma and even discrimination from those around them.

“We find that when people are first diagnosed with dementia, it’s very difficult because (others) treat them differently,” said Dr. Nisa Sutherland, a research associate with the Centre for Education and Research on Aging and Health (CERAH) at Lakehead University.

“They will all of a sudden stop talking to them, exclude them from social activities, and just make assumptions that they’re not able to speak for themselves or be active in the community.”

Northwestern Ontario has seen some improvements now though, thanks to an active research program in Thunder Bay, a grassroots advocacy group, and most recently a conference.

CERAH is a translational research program at Lakehead University that focuses on improving health for an aging population. Areas include palliative care, aging at home, and dementia. CERAH supports the North West Dementia Network, which launched in 2012 to “challenge the stigma and champion the rights of people living with dementia” among other things. A sub-committee called the North West Dementia Working Group (NWDWG) formed in 2013 as a self-guided and self-determining advocacy group of people living with dementia and their care partners. CERAH provides evidence-based findings and logistical support for the group.

The NWDWG formed out of the need to keep people active, engaged, and involved after their diagnosis.

“What we like to do is encourage people with dementia to do for themselves,” said Dr. Sutherland. “We’re not there telling them what to do. They are the drivers of what’s happening.”

“The centre has also been involved in a number of research projects in the last ten years around evidence-based practice for people living with dementia,” said CERAH project manager Ruth Wilford. “This working group and care partners have been part of the research.”

This symbiotic relationship is “a bit of an anomaly” Wilford said. But it’s been beneficial, providing support for those with dementia and their care partners today while gathering research to improve evidence-based approaches for tomorrow.

“It’s a good synergy. We’re providing some research for this group, and they’re part of the research,” Wilford said.

Jim Berry, who was diagnosed with Alzheimer’s, is one of those who has benefited. He believes that simply being active with NWDWG has helped improved his quality of life. “My dementia hasn’t progressed over the last three or four years – I’ve stabilized. For me, I tell myself I’ve got to be physically active and mentally active. I think that does help in slowing down the progression.”

The group meets together three Sundays per month at the Urban Abbey in Thunder Bay to socialize. Called the Dementia Café, it is a safe space where participants can be themselves and not worry about stigma.

“It’s a good spot for people to come and meet each other and enjoy their company,” Berry said.

The Dementia Café also focuses on advocacy issues to help raise awareness, fight the stigma, and provide input on dementia care policy at the local and provincial levels.

It was Berry who had the idea to broaden the scope of the Dementia Café into a full conference. Called “Living Well with Dementia: Creating Dialogues of Hope,” the conference helped bring together people from across the region and as far away as Winnipeg.

“I thought the conference was important for the region for us all to be in the same room at the same time and talk about the same issues,” Berry said. Included with those talks were how to overcome those issues and provide support, he said.

“We’re hoping that people will come to the conference and take away strategies for their communities and their homes,” Wilford said. For example, the opening keynote speaker, Roger Marple was to talk about his strategies for living independently with dementia for the last 10 years. Participants were to attend a Dementia Café as well, and perhaps use it as a template in their communities.

CERAH director Dr. Elaine Wiersma said that above all, the Dementia Café is a great opportunity to meet in a coffee shop environment to come and hang out. “You don’t have to worry about any of the things that you might when you’re out in the community. It’s a safe place… a place to belong.”

 

 

Filed in: Briefs, Education, News

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