For a couple of years, a 48-year-old Victoria woman blamed her brain fog on stress until her neurologist said the words “early onset Alzheimer’s” and everything became clear.
“I never would have thought that’s what was happening to me,” said Rebecca Luna, a single mother of two daughters, ages 18 and 28. “I’m in shock.”
Recent test results have left no doubt of the diagnosis, and her neurologist has said her life expectancy is five to seven years.
“I have a lovely life that has sadly taken a very tragic turn,” she said.
Early-onset Alzheimer’s occurs before age 65 and afflicts about 28,000 Canadians, according to the Alzheimer Society of Canada. It is typically diagnosed when people are in their 40s.
Of those with Alzheimer’s — the most common subtype of dementia — fewer than 10 per cent have early onset.
“Typically, we say that number is around five per cent in Canada,” said University of Victoria professor Stuart MacDonald, an expert in cognition and brain sciences.
MacDonald said early-onset Alzheimer’s differs fundamentally from Alzheimer’s that arises later, and there are different subtypes with different symptoms.
The majority of people — including Luna — have a non-familial form. The genetic form is aggressive and affects about 10 to 15 per cent of early-onset patients, who then have a 50 per cent chance of passing the gene mutations to offspring.
Dementia ‘never once discussed’
From her Fairfield home, Luna can talk matter-of-factly about the chronology of her disease, crack jokes about her symptoms, and release a grief-stricken cry over why now.
She worked in health care for two decades before joining the provincial government in 2019, a job from which she is now on medical leave. Notable symptoms — including a hand tremor and forgetfulness — began about two years ago.
Red flags came in the form of disorientation in familiar spaces and doing familiar tasks.
One work day, she sat down in front of her computer and her mind went blank. She resorted to her job training notes, but even then, the process seemed foreign.
In 2023, Luna took a year off work.
A full-time single mother of a teenager, Luna had a series of plausible rationalizations for her symptoms: caregiver burnout, anxiety, depression, fatigue — “all the excuses you can gaslight yourself with,” she said.
And then there were the catch-all hormonal changes served up by perimenopause.
“I really chalked it down to stress,” she said. “One hundred per cent, everybody thought I had anxiety.
“It was never once discussed that I might have early-onset Alzheimer’s.”
Luna was referred to a psychiatrist and did poorly on the Montreal Cognitive Assessment, better known as the MoCA test, but that alone didn’t render a diagnosis.
Ups and downs
Being off work reduced her stress, and some of Luna’s symptoms lessened. But others persisted, and new ones cropped up — such as trouble judging distances.
Once, she forgot a pot of boiling eggs on the stove.
“People do that all the time,” Luna said. “But I had forgotten to the point of taking myself for a half-an-hour walk downtown.”
She rushed back to find her suite “covered in black smoke; it was quite scary.”
There was the time she drove herself to the gym. When she returned to her car after exercising, she couldn’t find her keys.
She checked inside and around the car, in the gym locker room and at the front desk, and at every machine she used.
Luna eventually found the keys: They were still in the ignition. “The car had been on for the whole half hour with the keys in the whole time.”
She developed a slight stutter and sometimes couldn’t find the words to explain herself.
Required to return to work in 2024, Luna worked remotely from home. She was given consistent and familiar work and set hours. She simplified her personal life.
A psychiatrist had suggested she had mild cognitive impairment based on the results of MRI and CT brain scans, but things seemed stable.
So when a neurology clinic phoned to schedule a long-awaited appointment, she almost didn’t go, thinking it was a waste of health care dollars and the specialist’s time.
But she went.
She failed another MoCA test. Badly.
“I thought I did great,” Luna recalled. “I was by myself because I’m like, ‘This is nothing, I’m going home to finish work and I’ll be fine.’ Instead, the neurologist walks in with pamphlets about early-onset Alzheimer’s.”
Further testing, including another brain scan and a spinal tap to look for potentially abnormal levels of proteins, helped confirm the complex diagnosis.
“He said, ‘You have early-onset Alzheimer’s, no more testing,’ ” she said, adding she was told her disease is progressing quickly.
“I’ve been in extreme grief,” she added.
She recalls the time she was out shopping and suddenly had no idea what the housewares in her cart were for, what home they were for, or where that home was.
“I stopped my cart, and I closed my eyes, and I’m like, ‘Where do you live?’ And it took a while, and then I got a blip of it,” she said, adding she now shares her location with family and friends.
“I’ve been told to tell my children and … to put plans in place.”
The challenge of diagnosis
MacDonald, who is not involved with Luna’s case, said her experiences are not unusual among individuals diagnosed with early-onset Alzheimer’s.
“It’s such a challenge because these individuals are not in their 70s or 80s — they’re often in their late 30s or their 40s — and so when you experience some of these symptoms, usually the last thing you’re thinking about is this might be a subtype of early-onset dementia,” he said.
“What you’re thinking is: Is this a chronic condition? Is it menopause? Is it stress? Is it alcohol disorder?”
The scientific literature is clear that diagnosis of early-onset Alzheimer’s ends up taking much longer than for late onset, MacDonald said. “Compared to those older than 65, it’s probably at least a year-and-a-half longer diagnosing these early cases.”
A Dutch study found it takes 4.4 years, on average, for younger people to be diagnosed, compared with 2.8 years for those over 65.
Patients with early-onset dementia tend to have changes in different areas of the brain. That can result in more pronounced deficits related to paying attention, following a conversation or speaking, planning or problem-solving, judging distances or navigating.
“Being lost in familiar context, that is a symptom that’s sometimes more pronounced in early onset,” said MacDonald, who has published more than 100 scientific articles and book chapters related to his research in Alzheimer’s and dementia, individual differences in cognitive aging, the cognitive neuroscience of aging.
There can also be personality changes, depression, irritability, diminished motivation, and motor and movement changes such as the change in a person’s gait.
MacDonald, who has researched genetic, biological, and psychological risk factors, argues we have some degree of agency related to these diseases.
“There are things, things that you can do to really help either lessen your risk or improve your quality of life,” he said, adding patients would do best to ignore the inclination to isolate.
Taking control of the future
Far from retreating, Luna is maintaining her engagements and taking charge of her uncertain future.
As a patient, she’s accepted her diagnosis. As a mom, she’s found peace with the parent she became and the sacrifices she made to raise two beautiful “emotionally stable” and “well-adjusted individuals.”
She’s created a fundraising page to support herself and her family, used social media to make connections and share her progress, and arranged for medical assistance in dying.
She’s been told by a MAID provider to expect one to two years of what she considers good quality life.
“I don’t want to be in a diaper. I don’t want to be in a wheelchair. I want to recognize all my family members. I want to be able to dance. And I want to be able to laugh and feel joy,” she said.
“I want to go when I want to go, and I think I’m going to end up going before other people want me to go.
“But I do hope that part of the pain that they’re going to experience will be at least relieved with the knowing that I’m at peace.”
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