Speaking Up

Canadians living with dementia are banding together to influence change

Dementia Advocacy Canada is an initiative that aims to amplify the voices of Canadians who are living with dementia, and the voices of care partners.

The grassroots movement was created so that Canadians who know dementia best can work together to influence dementia-related policies, improve access to supportive services and have an active and respected role in decision-making, policy and program development.

The idea for the movement started in May 2018 at the National Dementia Conference in Ottawa, which included people living with dementia and care partners from across the county. Several attendees met over a few beers and recognized their shared common interests and value as a distinct and separate entity. In January 2019, Dementia Advocacy Canada emerged from those initial meetings and currently has more than 150 members.

“I tell people that I’m the expert. I’m the one living with dementia,” says Myrna Norman, a B.C.-based member of the Dementia Advocacy Canada executive. “It’s my passion to see change and I can offer ideas as to what therapies and practicalities can truly help individuals living with dementia.”

Norman is one of five members of the executive, four of whom live with dementia. All five members were in Ottawa during the 2018 National Dementia Conference for the movement’s beginnings.

As a member of the executive, Norman helps drive the movement’s organizational framework by ensuring all members work together and are included in its decision-making. The executive also connects members with each other, either through in-person meetings in different cities when possible, but largely through video conferencing and social media.

Dementia Advocacy Canada’s spring 2019 survey, which was shared with those living with dementia and care partners, confirmed its top priorities:

1. A single point of contact to mitigate the difficulty navigating a fragmented system.

2. Regulation of personal support workers and standards of excellence in dementia care.

3. Rehabilitation to live as well as possible with a dementia diagnosis.

“People with dementia and care partners are speaking up. We understand that we can change the policy. We understand that we can influence the government and we can improve health-care services across Canada,” says Norman.

That includes Canada’s rural north. Susan Rae is a Dementia Advocacy Canada member who lives in Whitehorse, Yukon. Her husband, Dr. Andrew Kaegi, a retired physician, lives with dementia and Rae is his care partner. After his diagnosis, Rae had trouble finding any information, resources or supports. She felt isolated and like there weren’t any policies or programs in place to help people living in Canada’s remote areas.

“Through Dementia Advocacy Canada, I feel like I’m a voice not only for caregivers, but a voice for Northern Canada,” says Rae. “Each location in Canada will be unique in its needs. Up here, what we do to support individuals with dementia and care partners will likely look very different from a big centre. But people living with dementia and their care partners in remote areas can speak up and share what it is we actually need.”

Rae adds that Dementia Advocacy Canada is an integral connection to a support network. She’s accessed resources about hosting dementia-friendly meetings and has received advice on how to help stop her husband from misplacing his hearing aids — both supports she hadn’t found in her hometown.

Looking to the future, both Norman and Rae hope to see more Canadians who are impacted by dementia join the grassroots movement.

“For the grassroots movement to succeed, we need to speak up,” says Norman. [ ]

Learn more at dementiacanada.com