Alzheimer’s disease and other forms of dementia are one of the biggest public health challenges in Canada ‒ as big as cancer, heart disease and stroke. Globally, dementia is being called an “epidemic.” At a recent global meeting on dementia, World Health Organization Director-General Dr. Margaret Chan said she could “think of no other disease where innovation, including breakthrough discoveries to develop a cure, is so badly needed.”
As a researcher and neurologist who treats people with dementia, I feel their frustration when I tell them there is no cure, and that the drugs and therapies we can prescribe are of limited efficacy. In fact, I share their frustration.
Throughout my career, I’ve researched dementia therapeutics, which promise to improve quality of life for those living with dementia by curbing symptoms and slowing their disease progression. But our own progress as researchers is slow. Too slow.
More research and strategic infrastructure are required if we are to achieve the same kind of breakthroughs that large government investments have made possible for other public health conditions, such as HIV-AIDS and the Ebola virus.
I say this because infectious disease models emphasize understanding an individual’s biological profile and the genetic markers of a disease. Adapting these models to dementia may therefore enable personalized care, tailored medicine, and targeting specific populations who are at greatest risk. Targeting is essential, given the cost and varying efficacy of the medications currently used.
Recognizing this, the dementia research arm of the Canadian Institutes of Health Research – the Canadian Consortium on Neurodegeneration in Aging (CCNA) – recently launched the largest Canadian study on Dementia, called COMPASS-ND.
Over the next two years, the study will enroll 1,600 participants from 30 sites across Canada who have memory problems and are between the ages of 50 and 90.
To date, most studies of age-related cognitive decline have focused on specific types of dementia in isolation. The goal of COMPASS-ND, however, is to study dementia holistically, including cases where there are multiple pathologies involved – such as Alzheimer’s disease and cerebrovascular disease – commonly referred to as “mixed” dementia.
This broad approach is being taken to investigate what these dementias have in common, as well as what differentiates them. Doing so will help in diagnosing, understanding, and working to prevent the onset of dementia in all its forms.
In the case of mixed dementia, study results will help CCNA researchers examine the impacts of different pathologies alone and in combination, as well as their implications for disease course and treatment.
Outside of the research labs, more dedicated case management for follow-up care throughout Canada is needed. This would support people with dementia in navigating the healthcare system and anticipating needs as the disease progresses. Quebec has already begun placing nurses in this role, where it has shown promising results.
Yet while these steps are urgently needed, Canada is only spending about $41 million on dementia research each year, through the Canadian Institutes of Health Research (CIHR). That just isn’t enough, especially when compared to the research investments of other developed countries.
With former Prime Minister David Cameron as champion, the government in the United Kingdom invested £66 million in research, according to Alzheimer’s Research UK. Not only does this account for three percent of the UK’s total medical research investment, it represents a doubling of funding for dementia research since 2009-2010.
The U.S. National Institutes of Health, meanwhile, spent nearly a billion dollars in a single year. An estimated $991 million was spent on Alzheimer’s disease and dementia-related research in 2016 alone.
According to the recent report from the Senate Committee on Social Affairs, Science and Technology (2016), the outputs and capacity of CCNA’s 430 researchers would be greatly expanded by increasing research funding to one percent of the annual cost of health care for dementia patients.
This would more than double CIHR’s current funding – bringing it in line with international standards – and it would “likely permit researchers to find a disease-modifying treatment by 2025,” according to the Senate committee report.
This funding increase is imperative for the estimated 564,000 Canadians living with dementia. What’s more, by 2031, this figure is expected to rise to 937,000, an increase of 66 percent. Any way you look at these numbers, it’s clear that dementia research is woefully underfunded in Canada.
Proactively, the Senate report called on the federal government to develop a national dementia strategy to accelerate investment in all areas of dementia research, including prevention, treatment and quality of life.
As I see it, developing and mobilizing a national strategy is the job not just of politicians, but of citizens. Individuals, families, policymakers and clinicians must, together, build and reach consensus to make recommendations to the federal government to uptake a national plan.
Quite simply, providing better diagnostic services and supports for dementia care throughout Canada requires allocating funds more strategically. For this, Canada will require both a substantial increase in publicly-funded research and related infrastructure.