Amplifying Lived Experience

Dementia Advocacy Canada’s survey focuses on identifying and spreading what’s working for Canadians right now

Since its inception, Dementia Advocacy Canada (DAC) co-chair Mary Beth Wighton says the organization has worked to elevate voices of lived experience to the highest level of policy-making, inspiring real change in the process. DAC’s recent online survey is an extension of its mandate.

“We never really have gone out and said to people living with dementia across Canada ‘What’s working?’” explains Wighton. “We need stuff now. And there’s stuff working now. So, we just have to identify the things that are working now and get them out there.”

DAC created the online survey to identify effective dementia-specific practices and programs in health-care systems across the nation available now.

Wighton, who was diagnosed with probable front–temporal dementia in 2012, hopes to amplify perspectives of others living with dementia and care partners through the survey, leading to the potential spread of initiatives across the country. For example, if a program is identified to be working for someone living in Manitoba under their provincial health care, that insight could be more easily shared with Alberta policy-makers.

“We have to really cut through all those barriers and the silos and just say to everyone across Canada: if it’s working, tell us about it. And if it’s not working, tell us about it,” says Wighton. 

The five-question survey, which opened in November 2019 and takes roughly 10 minutes to complete, asks participants to relay information about different dementia-related practices, programs and resources they feel have been effective and ineffective. At the time of publication, the survey had been completed more than 1,000 times by Canadians living with dementia and care partners.

Wighton hopes the survey results spur real-time change for people living with dementia.

“To say there’s something that’s working in Nova Scotia, they’ve tried it in their different communities, and we can move it over to Southampton [Ontario] right now — that’s powerful,” says Wighton. “I just am so excited about where this is ultimately going to lead. It’s going to change lives.”

Initial results were gathered in May and are currently being evaluated, although the survey will remain open indefinitely for further completion and analysis. In order to ensure the best possible results, Wighton encourages everyone who hasn’t yet to take part in the survey, either by completing it themselves or sharing it with anyone they know living with dementia or as a care partner. 

As DAC continues to process survey results, Wighton says that individuals with personal experience will continue to be core advisors throughout the development and implementation of any future programs and services.

“This is about a team of people who want something to be the very best for people living with dementia, and care partners,” says Wighton. “Every person on our team is important, and every person who does this survey is now considered part of our team.” [ ]

To take the survey or review available results, visit dementiacanada.com