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Understanding people living with dementia

Those who have been diagnosed with dementia often struggle with misconceptions about the disease.

Dementia is not a natural part of aging even though age is the biggest risk factor: After 65, your risk for dementia doubles every five years.

But it is not just a disease of the elderly — you could be diagnosed in your 50s, 40s or even 30s.

Reverend Faye Forbes

Faye Forbes: Building understanding through active social connections

Shocked by her diagnosis of Alzheimer’s disease at age 57, Reverend Faye Forbes says that the right medication and a positive outlook have helped her to not only manage her symptoms, but also to set a positive example for everyone she interacts with. Eight years after her diagnosis, she has achieved her goal of becoming an ordained minister, participates in numerous events and educational forums to help increase understanding of dementia, and is a director of the board of the Alzheimer Society of Canada. Faye also shared her experience as part of this year’s awareness campaign, including appearing in several videos outlining typical symptoms of dementia and strategies for dealing with them. “Alzheimer’s is not the end of life,” says Faye. “I’m still the same person as I was before. I have the same feelings and outlook. I can still think for myself but just can’t always express my thoughts as I used to.”

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, and a 2,397 per cent increase in media reach year over year.

Roger Marple

Roger Marple: Sharing his experience to educate others

Since he was diagnosed with young onset Alzheimer’s disease in 2015, Roger Marple has become a vocal advocate for others, working to dispel myths about the disease and reduce the stigma surrounding dementia.

As a participant in the Canadian Dementia Priority Setting Partnership study, he helped to identify the top 10 dementia research priorities for Canadian researchers and research funding organizations. As one of eight members of the Alzheimer Society of Canada Advisory Group, all living with dementia, he contributed to the development of a resource manual to help organizations foster the meaningful engagement of those living with the disease. He and other members of the Advisory Group have also led training sessions to help Alzheimer Society staff become even better partners for people with dementia. And perhaps most important, he has shared his experience through our awareness campaign. “Dementia does not discriminate and that includes age,” says Roger. “When you meet someone with dementia, clear your mind of any preconceived perceptions you may have and see the person for who they are—in the here and now.”