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.
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.
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.
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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
“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.’”
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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
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alzheimer’s clinical trials, research and screening progress
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.
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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.
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prevention, quality of life and managing alzheimer’s symptoms
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.
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