By Pauline Tardif, CEO, Alzheimer Society of Canada

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Every day, I hear the stories of Canadians who are living with the realities of dementia in all its forms, whether they are experiencing the disease first-hand or as caregivers. I learn about successes—and failures—in research. I digest statistics and information to help me understand the ever-growing scope and magnitude of what we are facing as a country when it comes to Alzheimer’s disease and other dementias.

It can be overwhelming at times.

But there are some bright spots, some real moments of encouragement, and I think it’s important that we celebrate them.

1. We have a national dementia strategy.

In the next few weeks the Public Health Agency of Canada will release the government’s response to the National Strategy for Alzheimer’s Disease and Other Dementias Act, passed in 2017. I have been privileged to co-chair the Minister of Health’s Ministerial Advisory Board on Dementia to support the development of our national strategy. The strategy is a significant step forward for Canada. And it is informed by the three pillars identified at the National Dementia Conference hosted by the federal government in May 2018:

• Greater investment in dementia research, health care and community services;
• More meaningful help for caregivers and people living with dementia; and
• Education and awareness programs that counter stigma against dementia.  

Our national dementia strategy needs to address the whole person. Dementia is not just a health issue—it trickles in to all areas of our lives, from housing to employment to transportation to the way our communities support families living with dementia. We at the Alzheimer Society of Canada will continue to shine a light on the many ways dementia impacts our daily lives as our national strategy is implemented.   

2. We have federal funding to begin implementing the national strategy.

The March 2019 federal budget committed $50 million over five years toward a national dementia strategy to support and improve the quality of life and care for Canadians living with dementia and the family members who care for them. This funding commitment is in addition to the $20 million over four years committed by the government in 2018 for dementia community initiatives.

3. We have the first-ever charter of rights for people with dementia.

Last fall, the Alzheimer Society of Canada released the Canadian Charter of Rights for People with Dementia. It was a landmark moment, and one that represented over a year of work by our Advisory Group of people with dementia.

The Charter empowers Canadians with dementia to self-advocate while also ensuring that the people and organizations that support them know and protect their rights. It will help combat the ongoing stigma associated with dementia, and it was a useful resource for me and my colleagues on the Ministerial Advisory Board throughout the development of our national dementia strategy. I encourage you to become familiar with the seven explicit rights outlined at Alzheimer.ca/Charter, and to share the charter with others.

4. Canadians living with dementia are speaking up—and they are being heard.

Sharing our stories with others is a key element of what will move us forward as a nation in dealing with dementia. Before I joined the Alzheimer Society of Canada, my understanding of dementia was deeply personal, as a caregiver to my mother, who was living with late-stage vascular dementia. As CEO, I have been touched by the stories of people from across Canada, from all cultures and geographies, who are living with and caring for people with dementia. I’m so grateful to the brave and inspiring individuals who have shared their stories with me, and in some cases with the world through our national awareness campaign: Yes. I live with dementia. Let me help you understand.

These stories have broadened and deepened my understanding of the real-life impacts of dementia on Canadians in a way that no research or statistics ever could. And I, in turn, have been able to bring those stories to the table in my role on the Ministerial Advisory Board and in speaking with other members of Canada’s federal government.

I can tell you that it is the stories, the real experiences of Canadians, that resonate with and are remembered by our nation’s leaders—and that is one of the reasons why we must continue to share them. Another reason is to end stigma. Stigma is an ugly—and daily—reality for Canadians living with dementia, and one of our most powerful tools for fighting it is by speaking out against it and speaking up to share our experiences. Sharing our stories will help us all better understand the many faces of dementia across Canada and to move forward as a country as we implement our national dementia strategy.

And move forward we must. While we have made positive strides in helping Canadians living with dementia, the number of Canadians diagnosed with dementia is growing every year. We must gain momentum in our work to address the disease head on, and with a federal election looming this fall we can’t risk our national decision-makers losing focus on this public healthcare crisis.

You can help by continuing to share your stories, and by letting us and your political representatives know what you think of the national dementia strategy once it’s released. Tell them that we need a fully-funded strategy so it can bring about positive changes for the more than half a million Canadians living with dementia right now.

We must not lose momentum on the implementation of our national dementia strategy. That’s why the Alzheimer Society of Canada is launching a digital advocacy campaign. Keep an eye out for it and be sure to participate. It is essential that every one of us continue to speak up—for ourselves and for those we love.

Thank you for the part you are playing in finding help for today and hope for tomorrow for the millions of Canadians affected by Alzheimer’s disease and other dementias. What is your experience with dementia? Whether you are a donor, a volunteer, or a person living with or caring for someone with dementia, please feel free to send us an email to share your thoughts.

Sincerely,

Pauline Tardif