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Their family doctor told them that for now, there was nothing more to be done.

“When you get Alzheimer’s, you don’t even get a lollipop. It’s just you’ve got Alzheimer’s. Have a nice rest of your day,” Mike says.

There are 700,000 Canadians living with dementia, and their numbers are rapidly rising. By 2050, it’s projected that 1.1 million Canadians will have Alzheimer’s, dementia’s most common form.

For people with mild Alzheimer’s, the treatment options are often what some clinicians call “therapeutic nihilism” — no medications are offered, because nothing can change the course of disease. A person’s cognition worsens, and they move from mild to moderate to severe disease in time. There are no approved treatments in Canada that can slow this progression, only drugs to quiet symptoms.

That may soon change.

Health Canada is currently evaluating two drugs — lecanemab and donanemab — that may slow the progression of Alzheimer’s in some patients with mild disease.

These therapies mark the beginning of a new chapter in Alzheimer’s care. More than 120 drugs are in the pipeline, along with blood tests that will be able to diagnose the presence of Alzheimer’s.

But should new treatments be approved, many people will not be able to access them. Canada’s health systems do not have the capacity to diagnose, support and deliver these Alzheimer therapies to eligible patients within a reasonable window of time.

The level of change needed in dementia care will have to be similar to the revolution that happened in cancer over the last 70 years. Decades ago, patients with cancer were sometimes not even told they had the disease. They weren’t urged to get screening. Now, people are encouraged to seek out a diagnosis as early as possible. There are specialized cancer centres, dedicated oncology teams, spiritual and social supports and hundreds of treatment options.

Advocates for people with Alzheimer’s say a similar revolution in dementia care is possible. But the change must start with recognizing that Alzheimer’s is “something other than a death sentence,” says Mike.

Mike was relieved when his doctor told him he had Alzheimer’s. “I have peace of mind now. I now know what’s wrong and I have time to make choices about how I spend my time,” he said. He joined the board of the Alzheimer’s Society close to his home in Amherstburg, Ont., and he sometimes meets other people with Alzheimer’s who treat their diagnosis like their life is ending. Kessler hates that. For him, this stage of Alzheimer’s is difficult, but busy and joyful.

He likens his brain to a cellphone where the battery runs low faster than it should. By midday, his “brain juice” is used up, and he needs a two-hour nap to recharge. Other times, he feels like he’s walked into a room but doesn’t know why.

He gets frustrated with the way some people treat him after they learn of his diagnosis. Sometimes they ignore him and speak directly to Karen, or they talk to him in a baby voice. Alzheimer’s is not synonymous with incapacity, he points out. “A lot of things I [could] do, I still do. I just have to adapt,” he says.

The Kesslers go shopping together and visit their two sons and three grandkids. Karen’s become the family driver; Mike navigates. For longer distances, they mostly travel by train, where Karen rides for free as an official caregiver. Mike helps with housecleaning, using a battery-powered mop that Karen bought him because he loves power tools. “I am happy as a camper,” he says.

The couple say that having a diagnosis has helped them. They can plan for what’s ahead. And it means that, should Health Canada approve an Alzheimer’s therapy soon, Mike has increased his chances of getting it. These therapies are only for patients diagnosed with mild disease. If Kessler’s condition worsens, he’d no longer be an appropriate candidate.

Lecanemab and donanemab are monoclonal antibodies that work by removing amyloid from the brain. One kind of amyloid protein, beta-amyloid, builds up and clumps together, disrupting communication between brain cells and eventually destroying them. Since the 1990s, scientists have pointed to beta-amyloid as a possible culprit behind Alzheimer’s — an idea known as the amyloid hypothesis.

By clearing amyloid plaques from the brain, lecanemab and donanemab allow some people to remain in a mild stage of disease for longer. These therapies are not a cure; they slow the worsening of cognitive impairment in people with mild disease.

In clinical trials, nearly half of people on donanemab had no worsening of their symptoms of dementia after one year, compared to 29 per cent on placebo; lecanemab slowed cognitive decline by 27 per cent compared to placebo over 18 months. In one trial led by researchers in ɫɫ��, those taking lecanemab reported a higher quality of life and less care burden for their partners than patients taking placebo.

If either drug is approved in Canada, it will be the first new therapy for Alzheimer’s in two decades and the first with any evidence of slowing the disease.

“I would call it a historic time, and this achievement kind of cannot be understated,” said Luca Pisterzi, vice-president of research, programs and evidence at the Alzheimer Society of Canada.

Zahinoor Ismail, a professor at the Cumming School of Medicine at the University of Calgary, hopes Health Canada will greenlight the new therapies, but stresses that they are only appropriate for some people. “It’s not for the frail elderly. It’s not for nursing home patients,” said Ismail, who is also a clinician-scientist who sees patients in a neurology clinic and in nursing homes. “It’s for those people who have biologically confirmed Alzheimer’s disease who have mild dementia at the most.”

Ismail enrolled patients in clinical trials of lecanemab, donanemab and aducanumab, an anti-amyloid therapy that drugmaker Biogen submitted for Health Canada review but withdrew in June 2022 when the company said it would focus on lecanemab. A 65-year-old patient with mild Alzheimer’s “perked up” so quickly on aducanumab that Ismail initially attributed the change to placebo effect. The improvement was too fast to be drug-related, he figured. As the trial went on, the patient’s cognition remained high, even after five years of treatment, said Ismail. “I’d never seen that, ever, in my practice,” said Ismail.

He and others stress that these therapies are far from perfect. An editorial in The Lancet said the results for patients taking lecanemab “might not be clinically meaningful.”

These drugs come with a risk of side effects. The most concerning is ARIA, short for amyloid-related imaging abnormalities. These are spots of bleeding or temporary swelling in the brain. In trials of lecanemab, 12.6 per cent of patients had brain swelling and 17.3 per cent experienced brain bleeding. For donanemab, one-quarter of patients had brain swelling, almost one-third had brain bleeding, and three patients died after.

Lecanemab is currently approved in the United States, Japan, China, South Korea, the United Arab Emirates, Israel and the United Kingdom. In November 2024, the European Medicines Agency reversed an earlier decision and approved lecanemab, but with a caveat: the drug is only for people with mild cognitive impairment due Alzheimer’s and with one or no copy of ApoE4, a gene for the protein apolipoprotein E. These patients are less likely to experience side effects.

The European decision is a painful twist for people with two copies of the gene: they face a higher risk of developing Alzheimer’s and at a younger age and with faster progression.

Health Canada may decide to approve lecanemab or donanemab with a similar caveat.

If either drug is approved here, people will need to be diagnosed quickly and may need genetic testing to be eligible for these therapies.

Someone with mild Alzheimer’s who waits months or years for a diagnosis could progress past the point of eligibility.

But it’s hard to get a speedy diagnosis. One report estimated that the average wait time to receive a diagnosis or access treatments in Canada is 28 months.

“We’re constantly struggling with our wait times, even right now, to be able to see people when they need the help,” said Jennifer Watt, a geriatrician and clinician-scientist at St. Michael’s Hospital — Unity Health ɫɫ��.

Patients will face more barriers once they receive a diagnosis. They will need a PET scan to measure the amyloid level in their brain or a lumbar puncture to assess cerebral spinal fluid. They will have to visit an infusion clinic once or twice a month to receive the drug through an IV. They will need multiple MRIs every year to check for side effects.

This will be a heavy demand for an already overburdened health system.

Canada will need more health care workers focused on Alzheimer’s care, more imaging facilities, more infusion clinics, more awareness of the need for early diagnosis and more education about Alzheimer’s. That is according to a sobering report from Canada’s Drug Agency, released late last year, which said that an entirely “new pathway of care” will be required for people with this disease if these therapies are approved.

Sharon Cohen, a neurologist and medical director of the ɫɫ�� Memory Clinic, says similar widespread changes have happened in Canadian health care before — with tremendous benefits to patients.

In 1999, Health Canada approved the clot-busting tissue plasminogen activator (TPA) that must be given within four hours of the first symptoms of a stroke. This drug led to a revolution in urgent stroke care. The introduction of biologics to treat multiple sclerosis led to infusion centres and MRI monitoring. And cancer treatment has become a multidisciplinary affair, with large centres offering imaging, treatments, surgery and psychological and spiritual care.

“There’s no reason why we can’t do this” for Alzheimer’s, Cohen said. “The mindset is the first thing that has to change. Yes, we can now do something more substantial for Alzheimer’s disease. Let’s make it happen. Let’s not just say, ‘oh, this is going to be a mess. It’ll be too complicated.’”

The medications should not be dismissed because of the side effects, she added. Most patients with ARIA go back on treatment after bleeding or swelling improves, she said. “We’ve seen patients who are very willing. And when I say, ‘do you understand there’s a small risk of serious side effects?’ They say, ‘doc, this is Alzheimer’s. Of course, I’m wanting something to keep me mild.’”

Other experts who care for people with Alzheimer’s are more skeptical about the benefits of these drugs. David Hogan, geriatrician and a professor emeritus at the University of Calgary, said more research is needed into the long-term effects outside of clinical trials.

“We don’t know how frequent (serious side effects and deaths are), and that will be an important point to clarify over the coming years,” he said. Hogan is not opposed to Health Canada approving these therapies, but stresses that they should be viewed with caution.

“I just don’t think this is the breakthrough that people believe it is,” he said. “I don’t think we’re any closer to a cure than we were when I started in 1984.”

Not long after Mike Kessler’s diagnosis, the couple took a trip to Nova Scotia, and Karen came down with COVID. “That’s every caregiver’s worst fear,” she says. She asked her husband if he had ever taken care of anyone. He said no. They were both frightened. She told him that she’d teach him what to do. They camped out in their hotel room and he set a timer on his phone for every half hour. He had three jobs when it went off, she told him, and he wrote them down in his phone. He had to make sure that she was breathing, check her for a fever and ask if she needed anything.

“He did it really, really well,” she says. “It made me think that there’s a lot more he can do than we thought. We’d also bought into that whole stereotype of, oh no, it’s Alzheimer’s. He can’t do anything. His wife’s got to take care of him now.”

Later, when the Kesslers learned about anti-amyloid therapies for Alzheimer’s, Mike wanted to take them as soon as they were available. They hoped that they could prolong this stage of disease. Now, he’s not so sure.

The price tag in the United States is $26,500 USD. That’s beyond the Kesslers’ budget. He and Karen worry that the risk of ARIA is too high for a family living in a rural area. They are 40 minutes from the closest hospital. In 2022, the Windsor-Essex region spent 2,272 minutes in code black, indicating no ambulances were available. The Kesslers are nervous about whether help would be available when they need it.

“These new drugs are very exciting, and if it was offered to me [for] halting the progression of the disease where I’m at right now, great. Sign me up,” Mike says.

But he knows that drug therapy might not happen for him, and he’s OK with that. He’s more focused on ending the stigma around Alzheimer’s and advocating for more medical and social supports for people with this disease. He wants a health system that offers early detection and access to specialists, along with peer support, exercise programs and multidisciplinary care — something more akin to what’s available for people with cancer.

“With cancer, they can always show you little kids, young women and young men, and people in their prime,” he says. “But when it comes to Alzheimer’s, they think of old men or old ladies in end stage.”

There’s a lot of life after a diagnosis, he points out. New medications are not his reason for hope. He’s started a YouTube channel, The Dementia Diaries, to show the public what life with Alzheimer’s is really like. He’s posted 18 videos, which he talks about travelling by train with Alzheimer’s disease, the calendar he created to keep track of his daily tasks and other topics.

In one of his first videos, he encourages people to seek a diagnosis as quickly as possible: “It named the dragon I was fighting against,” he says. “My diagnosis opened the door in a lot of ways — most importantly, with the new medications that may soon be available.”