A dementia diagnosis is devastating. What happens when you’re only 48?

TORONTO — Mark Breslaw sat in his car at a four-way stop just minutes from home, but suddenly didn’t know which way to turn.

“It was like I blinked and I opened my eyes and I didn’t know where I was. I had no recollection of how I got to this particular position and the worst feeling was I didn’t know what to do and there’s people lining up behind me,” recalled the 50-year-old former human resources executive.

“I just thought the safest thing is just to go straight, which wasn’t actually what I was supposed to (do),” said Breslaw, who had been driving the same route from work to his home in Surrey, B.C., for 18 years.

“I didn’t get far before I went, ‘OK, there’s the elementary school. I know I’m close … and then I was back.”

Although he was scared, Breslaw didn’t tell his wife what had happened when he got home that day three years ago, because he didn’t want to alarm her. He also didn’t connect the memory lapse to some problems that he — normally a very high performer in a fast-paced job — had been having at work.

Sometimes he would forget the names of people he worked with every day. Other times he couldn’t remember what floor he was taking the elevator to. Usually an excellent planner, he was finding tasks like scheduling his week took far longer than they used to. Once he missed three back-to-back meetings.

“None of this was constant and so, you know, it would happen and you’d be like ‘that was weird.’ But then it would happen again, maybe a week later, two weeks later,” Breslaw said.

He was worried, but chalked it up to stress, lack of sleep and a busy life balancing work with raising a young son. He also has two grown children who live on their own.

But when he found himself lost at that four-way stop two more times, he made an appointment to see his family doctor in January 2024.

What he thought would be a quick discussion turned into a long process that resulted in a diagnosis neither he nor his doctor expected: young-onset Alzheimer’s disease.

Alzheimer’s disease is the most common type of dementia, which is the umbrella term for a group of diseases that damage brain cells. Although it most often affects older adults, dementia is not a normal part of aging.

An estimated 772,000 people live with dementia in Canada and could grow to a million by 2030, the Alzheimer Society of Canada says.

Dementia is defined as “young-onset” when it is diagnosed in someone under 65 years old. It’s relatively rare — a 2024 report by the society estimates there were about 28,000 people living with young-onset dementia in Canada in 2020. It projects that number will reach more than 40,000 by 2050.

“Gathering accurate statistics on young onset dementia in Canada is … complicated by the fact that currently there is no national system for tracking all cases of dementia more broadly, let alone for people who develop dementia under the age of 65,” the report says.

A dementia diagnosis is devastating for anyone, but younger people face specific issues and services often don’t meet their needs, said Cathy Barrick, CEO of the Alzheimer Society of Ontario.

“These are people who are often in the prime of their life. They’re still working. They may have children still at home. They may have children in university,” she said.

“The very first service that is the biggest challenge is actually (getting) a diagnosis. So, I mean, diagnosis is challenging for dementia at any age, but even more so at a younger age because it is so not assumed that that is the problem.”

That was Breslaw’s experience during visits with both his family doctor and a neurologist.

“You’re too young to have dementia, essentially, was the message,” he said.

He went through a series of tests and scans looking for brain tumours, evidence of stroke, depression, attention deficit hyperactivity disorder — anything that could explain his symptoms.

Even when he scored lower than expected for his age on a cognitive test, his neurologist still didn’t think dementia was likely.

Finally, about a year after he first went to his doctor, a cerebrospinal fluid test revealed the amyloid beta protein that is a hallmark of Alzheimer’s disease.

Breslaw was 48 years old.

FAMILY AND FINANCES

Immediately, Breslaw had to give up his driver’s licence because he now had spatial impairment. He also had to leave the career he loved, because his doctor explained the work would quickly become too complex to manage as his disease progressed.

He and his wife pushed through their shock and grief to take control of anything they could, from seeing a financial planner to picking out a cemetery plot.

People with Alzheimer’s disease can live for 10 years or more and have a good quality of life with the right supports, said Saskia Sivananthan, CEO and co-founder of the Brainwell Institute, a dementia think-tank.

Although there is no cure, there are a few medications approved by Health Canada that can help manage symptoms or slow the rate of progression — but each individual case is different and patients need to discuss the risks and benefits with their doctor.

The disease is ultimately fatal as it progresses through different parts of the brain and eventually affects control over breathing, swallowing and other bodily functions, said Sivananthan, who is a neuroscientist.

Developing dementia while they are still young often forces patients and their families to figure out how to deal with the unexpected loss of income, she said.

Breslaw’s wife, now 46, has a senior job she loves at a local hospital foundation. He said he wants her to continue working full-time rather than taking time off to be his caregiver — not only because of the financial need, but because she has an identity that extends beyond his illness.

They worry about what they’ll have to spend as Breslaw needs more and more care, as they want to make sure their eight-year-old son has money for post-secondary education in the future.

“These are the things that we have to think about. You get diagnosed at 48, you immediately go into all the what-if scenarios,” he said.

LONG-TERM CARE VS HOME CARE

Breslaw’s family also figures prominently into where he wants to receive round-the-clock care when he needs it.

“I hear … people who are younger want to stay at home longer and I believe that to be very true for many people. It’s not true for me because I have an eight-year-old son,” he said.

“I don’t want it to look like a hospital and kind of see dad in that sort of very vulnerable way.”

Breslaw would rather move into a long-term care home to spare his family.

“I’m going to be largely surrounded by people who are, you know, two and a half decades older than me, if not older than that.”

His ideal living situation would be a transition house that could keep younger people who can no longer function on their own safely, but also allow them to have a better quality of life than in long-term care.

That’s an area where young-onset dementia support is definitely lacking, Sivananthan said.

“Most long-term care or assisted living places are not really set up for him. They are set up for older adults.”

DEMENTIA DAY PROGRAMS

Almost two years after his diagnosis, Breslaw can still walk his son to school and stay home while his wife is at work.

But he can no longer use the stove or microwave after doing so “almost led to a very catastrophic fire in our house.”

He was warming up some food for what he thought was 30 seconds but was actually 30 minutes and then walked away to fold laundry.

Breslaw forgot about the microwave altogether until the kitchen was full of smoke.

He knows as his Alzheimer’s disease progresses, he may need to go to a day program. They are available in many communities, but mostly designed for older people in their 70s, 80s and 90s, Breslaw said.

Barrick, of the Alzheimer’s Society, said someone with young-onset dementia may actually find that experience confusing if they are in later stages of the disease.

“He may be like, ‘why am I here with all these old people? Like, this is weird, I should be at work. Where is my wife?'” she said.

“As his brain changes, he may not be able to put those pieces together. And so it can actually create some behaviours that get exhibited in programs like that, because they can become quite distressed.”

Breslaw, who volunteers for the Alzheimer Society of British Columbia and Yukon, recently helped start a “small and mighty group” of people with young-onset dementia to advocate for more resources, such as transition houses, age-appropriate day programs and guidance on how to talk to children about what lies ahead.

MAID

The federal government recently announced it planned to amend the Criminal Code to allow people with dementia to make advance requests for medically assisted dying (MAID) before they lose their mental capacity to do so.

Those requests would lay out specific conditions when they would reach the point of intolerable suffering and want MAID to be administered, such as deterioration to the point where they don’t recognize their family.

But it’s up to the provinces to decide if their health-care systems will honour advance requests.

B.C. has not announced a position yet.

Breslaw doesn’t know whether or not he would make an advance request if it’s allowed, but said knowing it’s an option would give him peace of mind.

“It literally is something that keeps me up at night and it would be a weight lifted off my family just to have the choice,” he said.

This report by The Canadian Press was first published Nov. 15, 2026.

Canadian Press health coverage receives support through a partnership with the Canadian Medical Association. CP is solely responsible for this content.

Nicole Ireland, The Canadian Press