Dementia refers to a group of conditions that affect the brain and cause problems with memory, thinking, speaking or performing familiar tasks. But Alzheimer’s and other dementias don’t fundamentally change—or define—the people who are living with them. And with the right help and support, people with dementia can continue to do the things they love and remain active in their communities.
People living with dementia tell us, “Nothing about us, without us.” They have the right to be actively involved in the work of organizations, like the Alzheimer Society, that represent their interests. It’s up to us to learn how to accommodate their needs to make their engagement possible—and meaningful.
Canadian Dementia Priority Setting Partnership study
In 2017, researchers at the Toronto Rehabilitation Institute, University Health Network, Dr. Jennifer Bethell and Dr. Katherine McGilton surveyed more than 1,200 Canadians living with dementia, as well as their friends, family, caregivers and health-care providers. They identified their top 10 dementia research priorities, which will help to inform researchers and research funding organizations as well as the Government of Canada’s national dementia strategy.
The initiative, known as the Canadian Dementia Priority Setting Partnership study, was funded by the Alzheimer Society Research Program as part of our commitment to the Canadian Consortium on Neurodegeneration in Aging (read more about both initiatives).
The top priority identified in the study came as a bit of a surprise to researchers: It was understanding the stigmas associated with dementia, their impact, and strategies for reducing them.
“Yes. I Live With Dementia”: Our three-year nationwide awareness campaign
With stigma identified as our top research priority, the Alzheimer Society of Canada surveyed more than 1,500 Canadians in November 2017 to learn more about their attitudes and beliefs when it comes to Alzheimer’s disease and other dementias. Using the survey results, we developed a three-year multichannel awareness campaign with the goal of increasing understanding of the realities and experiences of Canadians who are affected by dementia.
The cornerstone of the campaign was the powerful, first-person stories of 37 ambassadors from across Canada whose lives have been touched by Alzheimer’s and other dementias in some way, each with the headline: “Yes. I live with dementia. Let me help you understand.” A bilingual digital toolkit was provided to all provincial Societies containing key messages, customizable print materials, radio scripts, social media posts and images, and tips on how to run the campaign locally.
Alzheimer Societies ran the campaign as part of national Alzheimer’s Awareness Month in January 2018. The results were astounding, with national radio, television and newspaper coverage, viral social media activity, nearly 25,000 visitors to ilivewithdementia.ca, and a 2,397 per cent increase in media reach year over year.