With each report about the newest sure-fire drug (aducanumab), with every intriguing university study (fluid from young mice improves memory in older mice), with every shocking headline about a cause (aluminum), people with Alzheimer’s disease and other dementias get their hopes up. And, inevitably, those hopes are dashed as the claims often crumble.
The latest census figures show Canada’s population is aging fast: from 2016 to 2021, those 65 and older rose from 16.9 per cent to 19 per cent, those 85 and older increased by 12 per cent. Statistics Canada says the number of Canadians 85 and older could triple over the next 25 years.
After age 65, the risk of Alzheimer’s doubles every five 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 of Canada, 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.
Canada pumps millions of dollars every year into research, other countries spend even more, and yet we still don’t fully understand what causes the disease and we’re a long way from curing it. Why?
“The condition is not a single entity, per se, but a spectrum of different conditions,” explains Dr. Roger Wong, clinical professor in geriatric medicine at UBC Faculty of Medicine, as well as vice-dean, education, in UBC’s medical school. “So when we talk about dementia — and Alzheimer’s is the most common [form] — along the spectrum on one end is Alzheimer’s disease, which is a neurodegeneration of brain cells. On the other end of the spectrum is vascular dementia, which is stroke-related dementia.”
The conditions in between, he explains, are a mixture of Alzheimer’s and strokes, which makes it difficult to find a treatment that works.
“What are we trying to cure?” says Wong. “Any kind of treatment, whether curative or not, must be tailored to meet the needs of the person, and each person can be different.” (There are several medications that don’t cure the disease but may slow the rate of cognitive decline.)
It’s much of the same story when it comes to figuring out the cause. According to the Alzheimer Society, a protein in the brain called amyloid-beta clumps together in between brain cells, forming deposits called amyloid plaques, which, when large enough, can block signals between brain cells, causing them to die, eventually leading to cognitive decline. Scientists still don’t fully understand why it happens.
“The amyloid theory is the predominant theory,” says Wong, who is also an associate of the Alzheimer Society of Canada as a board member, and the chair of the national research and knowledge transfer and exchange committee. “It is one of the pathways but not the only. People with Alzheimer’s may have the same diagnosis but they have different biology within them. We know that it’s not so much which of the theories is correct — it’s not so much a single answer, it’s all of the above, which increases the complexity.”
That doesn’t stop researchers from doggedly digging for answers for those more than half a million Canadians living with dementia though. And yes, though the answers continue to be elusive, funding for that research is crucial if we’re ever going to get there.
How much is dementia research worth?
The federal government recently allocated $50 million over five years for dementia research. The Alzheimer Society had requested $30 million per year. Wong says it’s not unreasonable to hope for more, noting the Canadian Cancer Society is funded 20 times the amount as the Alzheimer Society, and the Heart & Stroke Foundation six times higher.
He says it’s important to get a closer look at outcomes of research.
“Meaning, it’s not just theoretically [that] something should work, it’s actually, ‘does something work?’” says Wong. “There’s a difference. This is why we talk about translating the science into cure, but at the same time translating that knowledge into practical terms.”
Are we prepared for the ‘Silver Tsunami’?
Knowing that our older population is growing fast and understanding the extra strain that will put on our health-care system, are we prepared? In a word, no, according to Ngozi Iroanyah, manager, Diversity and Community Partnerships for the Alzheimer Society of Canada.
“Long-term care homes need to be better supported, funded, and staffed,” she acknowledges. But she points to the Ontario Alzheimer Society’s dementia strategy roadmap, which advocates for — among other things — earlier detection and prolonged aging at home. “It’s one way to get our government to understand that dementia is a significant issue that needs to be thought about and addressed now and not from a reactive standpoint.”
Wong adds that more dollars need to go toward not only research for causes, cures and treatments, the medical side, but also for the humanistic side, the quality of life of those living with dementia and their caregivers. Funding needs to also stretch to cover human resources — people, training, education — and to support underrepresented minorities, such as indigenous, people of colour, and LGBTQ communities.
“There’s a lot of different ethno, racial, culturally diverse groups that aren’t necessarily engaged,” says Iroanyah. “Research from other countries [suggests] that minority groups tend to experience dementia at higher rates than general populations.”
Advancements in diagnostics
Iroanyah says while there are many approaches to diagnosis — physical and cognitive exams, blood tests and scans — the Alzheimer Society wants more standardized testing.
“We are developing national guidelines to support family physicians to make more timely diagnosis and ways to communicate that diagnosis, because they are the first point of contact in the medical system for people living with dementia,” she says.
Wong says one research program is studying artificial intelligence as a way to more closely look at medical imaging to aid in earlier diagnosis.
“When you do imaging of the brain, there’s a lot of data collected,” he says. “[Researchers are looking at] how do you use computing techniques to capture this digital data, and use that machine learning to analyze and develop algorithms — or do a risk prediction — of how likely that set of data is associated with Alzheimer’s disease?”
People with Alzheimer’s and their caregivers need support
While we wait on definitive causes and a cure, people living with Alzheimer’s and other dementias, as well as their caregivers, need greater support.
“Dementia doesn’t discriminate,” says Iroanyah. “We have to be proactive and inclusive to make sure everyone who is experiencing dementia directly or indirectly can be best supported and acknowledged. They say when one person has dementia the whole family has it, in terms of providing care, scheduling, work, financing, housing.”
Underlying conditions such as high blood pressure, high cholesterol, and diabetes can increase the risk of blood vessel disease or stroke, which in turn increases the risk for dementias. And, as with many conditions and diseases, there’s no magic bullet other than the tried and true mantra of a healthy diet, physical activity and not smoking to help with prevention or postponement.
Wong says socialization is also important for those living with dementia, as well as music therapy or other art forms, which can all be helpful and calming. The Alzheimer Society advocates for dementia-friendly communities to allow those with the disease to function within a supportive community setting, free of stigma, and equipped with all the necessary supports, including easier use of transportation.
The road ahead is not paved with millennials
“As long as we keep talking and advocating, I do think we will see change,” says Iroanyah. “I do think the politicians and decision-makers need to look at the data from the Canadian census and other sources and not be tempted into thinking we have a large millennial population [so] we don’t have to think about that for years. It’s a constant consideration, thinking about how to prepare for dementia and how to fortify our health-care services, how to fortify our funding mechanisms, and how to fortify our tax system.
Still, she is hopeful. “Will it happen overnight? No. Do I think it will happen with consistent and increased advocacy and research? Absolutely. I call it a trifecta: government, health-care institutions and community. Are they all in sync, hearing each other, recognizing and responding to everyone’s needs to create something together? You’re never going to get 100 per cent of everything, but we can come as close as possible.”
To learn more about connect with programs that can help provide support, call the Alzheimer Society of Canada’s referral service at 1 855 705 INFO (4636).
Robin Roberts is a Vancouver-based writer.