Researchers fear National Dementia Strategy may falter

When Canada’s first national dementia strategy was announced in June 2019, it was roundly lauded by a spectrum of stakeholders, from biomedical researchers to community organizations to families caring for people with dementia. It wasn’t only a roadmap toward preventing dementia, advancing therapies, and improving the quality of life for people living with the disorder. The federal government had put much-needed funding behind it: $50-million over 5 years through the Public Health Agency of Canada (PHAC).

A year later, with new post-election mandates in place and a global pandemic driving research priorities, the same stakeholders fear the strategy may falter, and the optimism that surrounded its launch is fading. Dementia funding is beginning to trickle out through PHAC, but plans to implement the strategy — and additional funds to support that plan — have yet to materialize.

Of particular concern is a lack of new funding to support dementia research, a pillar of the national strategy. (The $50-million PHAC funding is committed to two of the strategy's other pillars: dementia awareness and surveillance.)

“We saw [the Budget 2019 funding] as a downpayment on the strategy,” said cognitive neurologist Dr. Howard Chertkow in an interview with Research Money. Dr. Chertkow is Scientific Director of the Canadian Consortium on Neurodegeneration in Aging (CCNA), a dementia research network with more than 350 members nationally, and a member of the Ministerial Advisory Board on Dementia that helped guide the strategy's development.

“Canada's strategy is quite ambitious, as it should be. But the funding that has been provided is not even close to what would be needed for a fully-funded strategy,” said Saskia Sivananthan, PhD, Chief Science & KTE Officer, Alzheimer Society of Canada, who also coauthored the WHO Global Action Plan on dementia. “One of the things I’ve seen from the work I did with the WHO is [that] without adequate resourcing, you’re not going to see the fruits of the ambition."

Sivananthan said that while PHAC and Health Canada are working on an implementation plan, "We need more sense of urgency. People with dementia just cannot wait.”

While it is reasonable to expect a delay in the face of the COVID-19 pandemic, she said, the global health crisis has also placed a magnifying glass on the needs of people living with dementia. An international report published this week analyzed the impact and mortality of COVID-19 on people with dementia in care homes. It found that 29% to 75% of deaths linked to the virus were among residents with dementia. (The report did not include Canadian data.)

"In many places, the basic human rights of people with dementia may have been compromised," the report's authors wrote.

A Global Priority

There are more than 500,000 Canadians living with dementia, and the cost to health care and the economy is estimated at $10.4 billion per year. As Canada’s population ages, that number is predicted to rise to $16.6. billion by 2031.

"Age is the greatest risk factor associated with dementia," said Dr. Samir Sinha, a geriatrician at Mount Sinai Hospital in Toronto and Director of Health Policy Research at Ryerson University's National Institute on Aging. "Within a decade, one in four Canadians is going to be an older person." Dr. Sinha is also a member of the Ministerial Advisory Board on Dementia.

The disorder's human and economic toll, and a rapid and accelerating demographic shift toward older ages in most industrialized countries, spurred G8 member nations in 2013 to commit to taking action on dementia. So when “A Dementia Strategy for Canada - Together We Aspire” was finally released last year, it was overdue. Canada became the last G8 country to fulfill that commitment and the 32nd country in the world to develop a national dementia strategy.

The delay offered at least one advantage. "We had the opportunity to look at everybody else's strategy and then figure out how to best meet the needs of Canadians," said Dr. Sinha. (See Table 1 for the strategy's national objectives and underlying pillars.)

Its research priorities include preventing dementia or delaying its onset, enhancing dementia care and treatment, and improving quality of life. According to Dr. Sinha, the strategy encourages a more holistic approach to dementia research; it also aims to maximize funding and impact by leveraging public-private and international partnerships.

The Cost of Prevention

The national dementia strategy set an aspiration goal for new investments in dementia research: annual spending in excess of 1% of direct dementia care costs, or $100 million per year; the Senate of Canada, which in 2016 released a report on dementia (PDF), made the same recommendation. In a series of federal pre-budget submissions, the Alzheimer Society, which advocated for a dementia strategy for more than a decade, has repeatedly requested funding of at least $150 million over 5 years to realize a "fully funded, robust, national research strategy."

In contrast, the Canadian Institutes of Health Research, with partners like the Alzheimer Society, is funding the current phase of the CCNA's research, focused on the themes of prevention, treatment, and quality of life, with $46 million over 5 years.

CCNA has not seen funding for dementia research increase to match the dementia strategy’s vision and objectives, said Dr. Chertkow: “The CCNA has been hard at work for the past six years. But the idea that we step up what we could do with a national strategy, that hasn’t happened.

Dr. Chertkow points to the CCNA's dementia prevention initiative as an example of research that could have a dramatic impact on the lives of Canadians. CCNA researchers have developed the Brain Health Support Program—a web-based interactive platform to educate middle-aged and older adults about lifestyle changes that can mitigate the risk of dementia, including sleep and dietary interventions, exercise and various medications.

"The program provides the advice you would get from your doctor, if you could meet with your doctor an hour every week," Dr. Chertkow said.

With a cohort of participants across the country, CCNA researchers are beginning to study which interventions are most effective at preventing dementia. But to realize the goal of personalizing those interventions based on an individual's risk factors, and studying interventions in combination, he said CCNA needs more funding.

"We thought, when the national dementia strategy comes, we can use that money to actually do those important prevention studies, and within five years, we should know what works and could roll it out to Canadians," he said. "You know, if we can delay the onset of dementia by five years, the prevalence would decline by 50% and the healthcare savings would be enormous."

Dr. Sinha said work has been done to realign funding to support dementia research, but it falls short of what is needed. "We’re seeing smaller, more targeted efforts, rather than a big, bold announcement of funding to combat dementia. It’s not clear how impactful those efforts will be over the long term to really deal with an issue that is not going away and may only get worse."

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