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what it feels like: 'don't give up' on life with alzheimer's disease

when craig burns was caring for his mother, who had alzheimer’s disease, he had no idea at the time that he was getting a unique insight into his own future.

by robin roberts

sep 11 2023

10 minute read

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what it feels like: 'don't give up' on life with alzheimer's disease

craig burns is involved in a website called flippingstigma.com, designed by and for people with dementia as well as their care partners and health professionals to address the challenges of stigma and discrimination. supplied

when craig burns was caring for his mother, who had alzheimer’s disease , he had no idea at the time that he was getting a unique insight into his own future. not long after his mother died, burns, who lives in kelowna, b.c., was diagnosed with young onset dementia at the age of 63.

“i don’t know exactly what the road ahead is going to be but i have a very good idea,” says burns, now 70. “i have different thoughts and feelings on that quite a bit; it weighs on my mind. i have days when i feel this is crap and i don’t want to do this anymore.”

that may sound morose, but burns laughs often. if you didn’t know about his diagnosis, you wouldn’t know he had alzheimer’s. apart from occasionally searching for the right word or forgetting where we were in the conversation, he is sharp, articulate and introspective.

to keep that mind sharp and his body fit — and from dwelling on the road ahead — he stays busy. he walks three to five kilometres a day, hits the gym a few times a week, and volunteers for dementia-related causes and organizations, including as spokesperson for the alzheimer society of b.c.

he’s also involved in a website called flippingstigma.com , designed by and for people with dementia as well as their care partners and health professionals to address the challenges of stigma and discrimination.

“it’s very user-friendly,” says burns. “it has to be because we want people with dementia to be able to navigate around so they can understand and learn and access resources.”

young onset dementia affects those under the age of 65, sometimes striking people in their forties and fifties. this form accounts for two to eight per cent of all dementia cases, according to the alzheimer society of canada. but it is our older populations that typically grapple with the condition, which is thought to be caused by the abnormal build-up of proteins, called amyloid and tau, in and around the brain cells, leading to memory loss.

alzheimer’s diagnosis and treatment options

before he was officially diagnosed, burns had been complaining to his family doctor for years about his failing memory. as client services manager for the canadian red cross, he says he routinely juggled multiple balls in the air. until he began dropping them.

“that’s when i told my doctor i was having problems with my memory, and more than once he said it was stress,” says burns. “you can only say that so many times. eventually i did the memory test and scored 27 out of 30. that was not an indicator that there was any problem. but still, the doctor said, ‘you’re fine, it’s stress, goodbye.’”

but burns kept pushing, and his doctor finally sent him to a specialist, who told him he had mild cognitive impairment, most likely leading to dementia. it was around this time burns heard of a clinical drug trial for the medication aducanumab (aduhelm in the u.s.), which clears the sticky protein fragments that accumulate in the brain of those with dementia. to qualify for the trial, he would undergo a pet scan and an mri, which confirmed he had alzheimer’s disease. he says he noticed improvement while on the drug, which is used to slow the decline in cognitive skills in the early stages of alzheimer’s.

but then the drug-maker, biogen, withdrew aducanumab from review last year after health canada said it failed to show sufficient clinical benefit and could have serious side effects. (the drug was approved in the u.s. in 2021.) that leaves four medications — aricept (generic name donepezil); reminyl er (generic name galantamine); exelon (generic name rivastigmine); and ebixa (generic name memantine) — that are currently in use in canada.

understanding the limits of alzheimer’s and living life to the fullest

despite all his involvements, burns, who moved into an independent living facility two years ago, admits he’s found the last year to be quite challenging. “part of it is loneliness and just doing the daily things of life,” he says. “i can shop for groceries but it’s a bit more challenging and frustrating.”

he attends a support group for his own benefit but also to support others. he says it’s the only place he can be around people who he understands and who understand him. “dementia is like a roller coaster: you’re great one day and the next day at the support group you’re not doing so swift. if others can sense that, you can talk about it, give them a hug, whatever it takes to encourage them. and when i say, ‘i know how you’re feeling,’ that means something.”

he also enjoys individual time with his four grandkids, taking them on outings such as mini-golf and video game arcades. “it’s a time to bond, to build relationships while i still can. i have a limited time frame, and what am i saving my money for?”

as much as he enjoys his various engagements, burns resigned from his role on the alzheimer society of b.c.’s board of directors. “i’ve scaled back a bit on some of my involvements, i just find it too much. i’m trying to have a quality of life. dementia goes hand in hand with depression. i tend to withdraw from conversations more. i tell my friends, if i’m quiet or if i don’t want to do something, please don’t take it personally. sometimes i just want to close the door and be by myself. that’s not healthy but it’s reality. i monitor it to ensure i get out and walk, stop for a coffee, talk to people.”

his message to others living with dementia is, don’t give up.

“after you get diagnosed, it’s like you got punched in the gut. but don’t give up on all the things you’re involved in; choose and assess where you’re at, what you can do, and also what you want to do,” he says. “access the alzheimer’s society, find a support group. if you live on your own, that’s even more difficult. if you’re partnered or married, hopefully you have a support person right there. live to the best. you’ve got a limited time frame, so jump in and get involved and have the best impact that you can.”

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alzheimer’s clinical trials, research and screening progress

as of january this year, across north america, there were 187 clinical trials assessing 141 unique alzheimer’s treatments, with 79 per cent focused on disease-modifying therapies. most research to date has focused almost exclusively on one protein, the beta-amyloid, known as the amyloid hypothesis.

dr. donald weaver, neurologist, medicinal chemist and senior scientist with the krembil brain institute at the university health network, a research hospital affiliated with the university of toronto, believes the research is too narrow and that the amyloid hypothesis is not the only pathway to improve patient outcomes.

“i think it’s unfortunate that so much effort has been put onto the amyloid hypothesis at the expense of evaluating and studying other approaches. we really haven’t studied the full breadth of the disease, which is a massively complicated disease,” he says. “it affects so many different cell types, so many different metabolic pathways, biochemical pathways in the brain that coming to grips with it and fully understanding it is a massive challenge.”

much as a physician doesn’t rely on one pill to treat high blood pressure when there are at least 20 pills on the market, weaver expects — or hopes — that this will be how dementia drugs will be administered in the future.

“i think it’s naïve to think that there’s going to be a single drug that [treats it],” he says. “ultimately, it’s going to be a combination of medications, and to date we haven’t really been evaluating combinations, we’ve only been looking at single agents.”

he also notes that there are promising improvements in screening, pointing to a simple blood test on the horizon that will better predict the likelihood of developing dementia. “but this will have to be developed in concert with the treatment. the last thing we want is a blood test [that tells you you’ll] get alzheimer’s in 10 years, and the treatment options are zero.”

other pharmaceutical companies have submitted approval to health canada for two new drugs, lecanemab (marketed as leqembi), approved in the u.s. this summer, and donanemab, to be approved in the u.s. later this year. no drugs, unfortunately, reverse or stop the progression of dementia, they can only slow it.

should canada approve the two new drugs, navigating the infrastructure so patients can access them will still be challenging, according to dr. heather cooke, manager of research and knowledge mobilization at the alzheimer society of b.c. and adjunct professor in sfu’s department of gerontology and ubc’s school of nursing.

“for them to be effective, we need to know that an individual actually has amyloid plaques in their brain,” she says. “so how do you determine that? you do a pet scan, which costs about $5,000 and is not covered. no province reimburses pet scans as part of routine care.”

then there is the challenge of administering those drugs: lecanemab requires a one-hour iv infusion every two weeks, donanemab and aducanumab once every four weeks. the canadian healthcare system simply doesn’t have the capacity or infrastructure to accommodate that.

as for his thoughts on the two new drugs under review, lecanemab and donanemab, weaver, who is also a research leader in drug design and has designed and co-developed two drugs that have reached phase iii human trials and has four others in preclinical development, says they’re a step in the right direction but not nearly a big enough step.

“if they’re still being widely used in 10 years i will consider that a bitter disappointment and a failure,” he says. “hopefully, these are short-term stopgap agents en route to better drugs. i mean, they work, and in a field which has had failure after failure for so many years, that in itself is a major achievement. but they’re not great. these are not easy drugs to use; they’re expensive and they’re cumbersome.”

aging population increases urgency for alzheimer’s knowledge

it’s no secret that canada’s population is aging fast: from 2016 to 2021, those 65 and older rose from 16.9 per cent to 18.3 per cent , the number of people 85 and older has doubled since 2001. statistics canada says the number of canadians 85 and older could triple over the next 25 years.

and while alzheimer’s and other dementias are not a normal part of aging, age is the biggest risk factor (others include genetics, lifestyle and environment). according to the alzheimer society , one in 20 people who have the disease are 65 and older. after age 65, the risk doubles about every five years. after 85, the risk is one in four. the society estimates that nearly a million canadians will live with dementia by the end of the decade.

so there’s an increased urgency to understand fully what causes dementia, to find better ways to diagnose it earlier, to develop effective treatments, and to ensure better quality of life.

organizations in canada and around the world have poured untold millions into research to find effective treatments, and they come up short year after year. the challenge is that dementia is not just one disease. researchers are now starting to realize that it exists on a spectrum, which includes alzheimer’s, a neurodegeneration of brain cells, on one end, and vascular dementia, which is stroke-related, on the other, and everything in between — a mixture of alzheimer’s and stroke.

“so you’re not just targeting alzheimer’s disease, you have to target the vascular dementia as well,” cooke says. “the complexity of the brain and the complexity of the disease is such a challenge for researchers. it’s probably going to be a multi-pronged approach to attack it on all fronts: with medications that target the plaques in the brain, medications that target the tangles, medications that target the inflammation.”

prevention, quality of life and managing alzheimer’s symptoms

while the wait for better diagnostics and treatments continues, there are some lifestyle modifications that can possibly ward off dementia. health professionals advise a healthy weight and diet, exercise, adequate sleep, reduced stress, and to not smoke. weaver says learning another language is also protective.

for those living with dementia, quality of life is key. the alzheimer society continues its focus on dementia-friendly community projects, where people living with dementia, their families and care partners feel included and supported. other researchers are studying music and the arts as calming tools and to increase socialization, improve mood, and even slow the rate of decline.

“it’s not necessarily that we always have to rely on medications; there are other psychosocial interventions that can also play a role,” says cooke.

robin roberts is a vancouver-based writer.

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robin roberts

what it feels like: 'don't give up' on life with alzheimer's disease

when craig burns was caring for his mother, who had alzheimer’s disease, he had no idea at the time that he was getting a unique insight into his own future.

alzheimer’s disease can be diagnosed years before symptoms appear, study says

machado: is it wrong to lie to someone with dementia?

alzheimer’s diagnosis and treatment options

understanding the limits of alzheimer’s and living life to the fullest

alzheimer’s clinical trials, research and screening progress

aging population increases urgency for alzheimer’s knowledge

prevention, quality of life and managing alzheimer’s symptoms

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what it feels like: 'don't give up' on life with alzheimer's disease

when craig burns was caring for his mother, who had alzheimer’s disease, he had no idea at the time that he was getting a unique insight into his own future.

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