January 27, 2026
By Yona Lunsky
January is Alzheimer’s Awareness Month in Canada. This year’s theme is Forget No One, a reminder that no one should face dementia alone. On January 28, you can help raise awareness by sharing information about dementia using the hashtag #ForgetNoOne.
This year, the start of Alzheimer’s Awareness Month was marked by a profound loss. On January 1, Petra Tolley—an artist, poet, sister, friend, and advocate involved early on in our H-CARDD program and featured in our Primary Care Atlas—died. She had Alzheimer’s disease. Petra’s life and loss make this year’s Forget No One campaign feel deeply personal to me.
Photo 1: Petra Tolley
I did not always pay a lot of attention to this annual campaign. It felt like it belonged to “another cause,” outside of my area of research and advocacy focus. But when the Alzheimer Society suggests that no one should face dementia alone, **and that “we can replace silence with support and stigma with hope,” I realized that this campaign is also about people with developmental disabilities and the people who love and support them.
The Alzheimer Society of Canada notes that by 2030, nearly one million Canadians could be living with dementia. Some of these individuals will have developmental disabilities. Others will be parents of adults with developmental disabilities, or siblings, aunts, uncles, grandparents, friends, or partners. If you would like to read more about what we know about dementia in our population, I have written about this in a previous blog post.
If no one should face dementia alone, then our community should feel just as supported as everyone else. People with developmental disabilities and their families should be able to find the resources they need. They should know that when they access healthcare, social services, or support at home, providers will understand them and their unique situations. And when they seek help navigating not only the healthcare system, but also their sadness and grief, that support should be there.
To truly not forget this group means that we cannot turn away because dementia feels scary or overwhelming. It means that the research we fund in our country must include people with developmental disabilities.
I am very proud to be part of the Brain Health-IDD team, as part of the Canadian Institutes of Health Research Brain Health and Cognitive Impairment in Aging Research Initiative (BHCIA). We are bringing together people with disabilities, families, health and social care providers, and researchers from across Canada to build capacity in our communities. To date, we have trained hundreds of people to promote brain health, encourage healthy aging, and screen for dementia. Over the past year, we have also learned from nine agencies across four provinces about how they, and their community partners, are building awareness, implementing screening, and providing dementia-related care. In the coming year, one of our key goals is to share what we are learning and work in partnership to reach more people and scale innovations that include our community so that they are not forgotten.
But there is still so much more work to do. Right now, when Alzheimer’s disease or another dementia becomes evident, people with developmental disabilities, their families, disability-sector staff, and healthcare providers often do not know what to do next or how to find the important resources that do exist.
We need to signpost better and be more thoughtful about how we do this: sharing the right resources, by the right people, at the right time.
What we share: General resources often do not capture what is unique about the dementia experience for people with developmental disabilities. They can also be difficult to understand. We need information that is both relevant and accessible to our community. One example is 4 Ways to Connect with Kindness, a plain-language video that explains some of the changes someone with dementia may experience. It is narrated by a person with a developmental disability, to help others understand what may be happening and how they can help. The video is part of a Canadian resource series developed through a joint project between Reena and the NTG-Canadian Consortium, funded by the Public Health Agency of Canada.
Figure 1: 4 Ways to Connect with Kindness
Who shares the information: One thing that I have seen again and again is how powerful it can be to talk to someone who gets it. This might be a healthcare provider who not only knows you or the person close to you now, but also how things were before. It might also be someone who has been in your shoes, either as someone with dementia or someone who has supported someone with dementia. We hear information differently depending on who is sharing it, so we need to help our community connect with the right people.