Most Canadians haven't planned for incapacity. Young onset dementia shows why that matters
World Alzheimer's Month wrapped up in September, but the conversation it started isn’t over. There’s one myth in particular that deserves more attention, and it’s that dementia is only a concern later in life.
As someone in their early 40s, I hadn’t really thought about the possibility of dementia at my age. But it’s a disease that can strike when you’re still young. In fact, 28,000 Canadians under 65 were living with dementia in 2020, and more than 40,000 are projected to by 2050, according to the Alzheimer Society of Canada. By 2030, nearly one million Canadians could be living with dementia, a 65% jump from 2020.
We tend to plan for the things we expect, like buying a home or retiring. But when the unexpected happens, the paperwork is usually the last thing anyone has ready.
Most Canadians are woefully unprepared for an illness or emergency. According to a survey from my company Willful, only 24% of Canadians have power of attorney documents.
These documents are incredibly important to have in place before you need them. They give someone you trust the legal authority to act on your behalf to manage your finances and healthcare decisions if needed, while allowing you to outline your preferences in the event of an emergency. This could mean outlining whether or not you want to stay on life support, should the situation arise. They have different names in each province, but they are often referred to as a healthcare directive, representation agreement, or protection mandate.
You can appoint the same person to manage your financial and healthcare decisions, or appoint different people in each role. If they needed to step in, they could pay bills, sell assets, or act on your behalf for any other financial matters. On the healthcare side, they would be able to make healthcare decisions for you, whether that be related to urgent care, or long-term planning.
Many Canadians are surprised to learn that your loved ones wouldn’t have automatic access to your affairs and key decisions — not your spouse, your parents, or even your children. If you don’t have power of attorney documents, it can slow things down because loved ones would need to go to the courts to petition for access to your finances. As for your healthcare, the law would typically appoint your closest family member to make decisions, whether or not that’s who you would have chosen.
The catch is that you can only create power of attorney documents when you’re mentally capable, and legislation in each province lays out the requirements for capacity. Because dementia symptoms can go undiagnosed for years, the window to sign a power of attorney document can close before you even realize. That's why it’s so important to create these documents when you’re in good health.
It’s easier than it’s ever been to get these documents in place. You can use an online platform like Willful, visit a lawyer (or notary, depending on your province), or even download government forms if they’re offered in your province.
In addition to getting the legal documents in place, it’s important to talk to your loved ones about what you would want.
I often think of the U.S. case of Terri Schiavo, a 26-year-old who was kept in a vegetative state for about 15 years while her husband fought a 7-year legal battle with her parents over removing her feeding tube. It shows how important it is to discuss these possibilities with loved ones so they know what you would want, instead of letting them decide for you when you don’t have a voice.
Conversely, it’s important to ask our loved ones about their choices. I recently discussed this with my husband, and noted down his preferences and funeral wishes. While it might sound morbid, it’s an inevitable part of life, and it made me feel empowered that I know I would honour his wishes.
Willful’s 2025 survey showed only 30% of Canadians have discussed an emergency plan with their family, so talk to your family about what you’d want, and ask them about their wishes. While we all hope to live to be 100, it’s not guaranteed. And while we hope to be healthy for the rest of our lifespan, that isn’t always the case.
Incapacity is possible at any age, whether from an illness, accident, or a disease like young-onset dementia. With nearly one million Canadians expected to be living with dementia by 2030, this isn't a crisis we can wait out.
We can't control when a diagnosis comes, but we can control how ready we are when it does.
Erin Bury is the CEO and co-founder of Willful, Canada’s leading digital estate planning platform. She regularly educates Canadians about end-of-life planning, and was named one of The Globe & Mail's changemakers in 2025.
The views expressed are those of the author(s). Canada Healthwatch publishes a range of perspectives and does not necessarily endorse the opinions presented.
