Frontotemporal Dementia in Canada: It's Time to Listen to Those Living It
Every year, organizations across Canada receive funding, donations, and public trust to improve the lives of people affected by dementia. They educate, advocate, and influence policy. They speak on behalf of the dementia community.
But here's the question we need to ask: Who is being heard?
For Canadians living with frontotemporal dementia (FTD), the answer is too often not us.
FTD is one of the most devastating forms of dementia. It frequently affects people in their 40s, 50s, and 60s, disrupting careers, parenting, relationships, and financial security. Yet despite its profound impact, it continues to receive only a fraction of the attention given to Alzheimer's disease.
Medical updates and research announcements are important. They deserve to be celebrated. But until there is a cure for FTD, awareness cannot stop at science alone. It must include the care givers and people living this disease every single day.
If You Speak for the Dementia Community, You Must Include All of It
Organizations that receive funding to support people living with dementia have a responsibility to represent the full spectrum of dementia—not just the most recognized diagnosis.
Too often, FTD is mentioned briefly, tucked away in a resource page, or overlooked entirely during awareness campaigns, conferences, webinars, and public discussions.
When people living with FTD are absent from these conversations, an opportunity is lost.
When caregivers are not invited to share their experiences, another opportunity is lost.
When families affected by FTD are excluded from advisory groups, education panels, and advocacy initiatives, organizations are making decisions about a community without meaningfully engaging with that community.
Representation should not be symbolic. It should be expected.
Lived Experience Is More Than a Personal Story
There is no substitute for hearing directly from someone diagnosed with FTD or from the spouse, child, sibling, or caregiver walking alongside them.
These aren't simply emotional stories designed to inspire an audience. They expose delayed diagnoses. They reveal gaps in healthcare. They identify barriers to services. They show what happens when younger people with dementia don't fit into systems designed primarily for older adults.
No research paper can fully capture what families experience navigating this disease.
If organizations truly want to improve awareness, then lived experience should be treated as expertise—not as an optional addition to a conference agenda.
Canada Has a Recognition Problem
In Canada, information about FTD remains scarce. Many families spend months—or years—searching for answers, only to discover that resources, support groups, and public education are limited compared to other forms of dementia.
This lack of visibility has consequences. People are misdiagnosed. Healthcare professionals miss the signs. Employers don't understand younger-onset dementia. Families feel isolated because they rarely see their experiences reflected in national awareness campaigns.
If awareness efforts consistently focus on one form of dementia while giving minimal attention to others, we cannot honestly say we are raising awareness for dementia as a whole.
It's Time for Accountability
Organizations advocating for dementia should ask themselves some difficult questions.
How many people living with FTD are on your advisory committees?
How many caregivers affected by FTD help shape your programs?
How often are FTD voices featured in your webinars, conferences, publications, or awareness campaigns?
How much funding is directed toward improving recognition and support for FTD?
If the answers are "very few" or "none," then it is time for change.
Listening to lived experience should not depend on a special awareness month or a single panel discussion. It should be embedded in every level of advocacy and decision-making.
Nothing About Us Without Us
The disability community has long embraced the principle: Nothing about us without us.
The dementia community should do the same.
Patients, caregivers, and families are not simply recipients of services. They are experts in living with this disease. They understand the challenges that statistics cannot measure and research papers cannot fully explain.
If organizations genuinely want to improve recognition of FTD, they need to stop speaking only for people living with dementia and start speaking with them.
We Cannot Wait
Researchers continue working toward treatments and, hopefully, one day, a cure.
Until then, recognition is one of the most powerful tools we have.
Recognition begins with listening.
Recognition begins with representation.
Recognition begins by ensuring that organizations receiving funding to support the dementia community include the voices of people living with FTD—not occasionally, but consistently.
Because if those most affected by FTD are still struggling to be heard, then Canada's conversation about dementia is not yet complete.
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