March 2024
Joshua J. Armstrong, PhD
Research Scientist – Alzheimer Society of Canada
Josh is Research Scientist at the Alzheimer Society of Canada and author of its new Landmark Study report The Many Faces of Dementia in Canada. Josh currently lives with his family in Thunder Bay, Ontario. With a multidisciplinary academic background, Josh has research expertise in health sciences, data analytics, gerontology, and public health. Before joining the Alzheimer Society, Josh was Assistant Professor in the Department of Health Sciences at Lakehead University.
Question 1: What is the Landmark Study and what led to this work?
Back in 2010, the Alzheimer Society of Canada released a study called Rising Tide: The Impact of Dementia on Canadian Society. It was pitched as the first study to estimate the health and economic burden of dementia in Canada over the following 30 years. And it brought a lot of attention – as well as needed data and forecasts – nationally to the subject of dementia.
Since that report was released, much more research has taken place worldwide on what causes dementia and what the related risk factors are. Also, since then, the demographics of Canada have shifted and changed as well.
In 2020, the Alzheimer Society of Canada set out to provide a more updated set of national dementia forecasts, taking into account the latest global dementia-risk research and new, refreshed census data.
This update is what the Landmark Study is – a project using data, evidence, and microsimulation techniques to forecast the impact of dementia in Canada from 2020 to 2050. In this effort, we have been supported by a team from the Canadian Centre for Economic Analysis, which has developed the statistical analysis platform we are using. From this study, we are developing three separate reports.
The first Landmark Study report, Navigating the Path Forward for Dementia in Canada, came out in September 2022. This report, available at alzheimer.ca/landmarkstudy, shared overall population projections for dementia. It also looked at the estimated number of care partners needed for people living with dementia, and the potential impact of dementia risk reduction on our country’s dementia numbers through to 2050.
The second Landmark Study report, The Many Faces of Dementia in Canada, was released in January of this year. This second report, which you can read highlights of and download at alzheimer.ca/manyfaces, tries to put faces to the numbers shared in our first report. We do this partly by looking at dementia projections as varied by Indigeneity, ethnicity, sex and gender, and age, and also partly by including first-person stories from folks who have experienced dementia in their communities, families or personal lives.
We are now working on a third Landmark Study report that will look at the economics of dementia care in Canada. That third and final Landmark Study report will be released in 2025.
One important note about this study and related reports: part of the reason we and so many other dementia researchers rely on evidence-based, data-driven models and microsimulations is that no solid system in Canada yet exists for tracking actual dementia rates. There is a Canadian Cancer Registry, for instance, that tracks new primary cancer diagnosed among Canadian residents since 1992, but there is no similar registry for dementia – at least, not yet. So, our field continues to rely heavily on these types of informed modelling studies in hopes of planning for and meeting the health needs of the present and the future.
Question 2: Can you provide some insight into how dementia impacts Indigenous and racialized people in Canada, and why it was important to focus on these populations in the report?
Great question. I will start first with the why: The number of people living with dementia in Canada is rapidly increasing – the first Landmark Study report projected a 187% increase by 2050. With the understanding of this trend, it is now more important than ever to get a better sense of the many, many differences in dementia symptoms, dementia risks, dementia care types and, perhaps most importantly, dementia care needs ahead.
Even from a narrow biomedical perspective, we know that more than 50 different diseases or conditions can cause dementia. And more broadly, of course, we know that the people living with dementia are as diverse as the different diseases and conditions that cause these brain disorders – in fact, more so.
So, in short, a one-size-fits-all approach will not work for people living with dementia in Canada – or anywhere else. Together, we need to adapt how we help everyone – including Indigenous, racialized, and younger people (who are also a focus of this report) – live as well as possible with dementia, while supporting equitable access to care, diagnosis and prevention tools for all.
As my colleague Natasha Jacobs, who helped bring forward some of the personal stories in this report, says, “We have to work together to make diversity and inclusion part of a more holistic approach to dementia prevention and management.” And we wanted to help make that clear in this report by providing impact projections, too.
So, in terms of impacts, according to our Landmark Study model, we expect to see a 273% increase in the number of Indigenous people experiencing dementia from 2020 to 2050. This would bring the estimated number of Indigenous people experiencing dementia from 10,800 in 2020 up to 40,300 in 2050.
A range of factors drive this increase. First, Indigenous communities in Canada are aging. With age as the strongest risk factor for dementia, there being more Indigenous people over the age of 65 will increase the number of Indigenous people living with dementia. However, with research showing Indigenous people being at higher risk of developing dementia, other factors must also be considered. Research has shown that because of many impacts of colonialism, Indigenous people in Canada are subject to higher dementia risks associated with what researchers call the social determinants of health — the conditions in which people are born, grow, live, work and age. These conditions play a strong role in influencing health outcomes, dementia, and dementia care access. These conditions also influence whether someone can actually take steps to reduce what were sometimes otherwise labelled as “individual” dementia risk factors – things like education, diabetes, hypertension and more.
This report also covers differences in dementia across a range of ethnic and racialized groups in Canada. From research in the UK and the US, we know that differences in dementia risk can occur across ethnic and racialized groups. Much more research is needed to know why this is, and exactly what is occurring in Canada.
Based on our Landmark Study model, we can expect to see a large amount of growth in Canada for people of Asian ancestry living with dementia — 785% growth from 2020 to 2050. This is not because of increased risk for people of East Asian and South Asian ancestry per se, but more because of the aging of people who have immigrated from Asia over the past 50 years and beyond.
The health and dementia outcomes of all people truly result from a complex web of both individual factors and social factors – and we hope that is made clear in our new report. We also hope it is clear that more research is needed because, to date, research studies on dementia have overwhelmingly focused on study groups dominated by White people and settler populations – not to mention folks who are cis, straight and male.
Question 3: Can you elaborate on any distinct challenges for 2SLGBTQI people living with dementia?
Well, before I discuss what is in our study, I want to say I really appreciate the work that Egale Canada and the National Institute on Ageing have done in terms of research around this very topic! The Coming Out and Coming In to Living with Dementia report your team did was excellent (of course!) and groundbreaking and we cite it in our report, as well as some of the tools Egale has created, like 2SLGBTQI Dementia Networks of Support – Where do you fit? And the advocacy Egale is doing to raise awareness about dementia and 2SLGBTQI+ people, like the recent Help Us Remain campaign, is amazing. I know Egale is a lead expert on this subject, and I look forward to reading and amplifying whatever comes next from your team.
In terms of our Landmark Study model, which relied on 2016 census data and the most widely recognized global findings about dementia risk, we sadly couldn’t create specific projections for the number of 2SLGBTQI+ people living with dementia in Canada due to a lack of available data.
We still did use our new report, though, to highlight some of the facts that researchers do know about 2SLGBTQI+ people and dementia generally.
For one, research has shown that 2SLGBTQI+ adults have higher rates of cognitive impairment when compared to heterosexual or cisgender adults. While more research is needed to determine why this is, dementia risk factors such as depression, social isolation and chronic stress may be strong contributors to faster brain aging across these communities.
Research has also found that members of 2SLGBTQI+ communities do not always receive access to high-quality health care. It has also been found that 2SLGBTQI+ folks can receive incomplete assessments and inadequate communications from health care professionals, and that they may have unequal access to dementia services and benefits.
Canada’s National Dementia Strategy has identified that 2SLGBTQI+ communities face barriers to equitable dementia care. On an anecdotal level, Andrea, an 2SLGBTQI+ community member who generously shared her story in our new report, for instance, notes that her partner has often been misidentified as her sister in medical meetings, and in some cases not permitted to remain in appointments with her.
Work is being done to understand those challenges more broadly, beyond the anecdotal level. One of the recommendations in our report is that more research should be done to examine the experiences of gender diverse and 2SLGBTQI+ individuals who live with dementia or who support individuals living with dementia. That is very important.
With growth expected in the number of older 2SLGBTQI+ folks living with dementia, much more research is needed as well into inclusive models of care. There is a critical need for increased attention to all aspects of a person’s identity — because all people living with dementia are much more than their medical diagnosis.
Question 4: What are some recommendations you’d make for promoting inclusion for all people living with dementia?
When it comes to overall recommendations for dementia, it’s incredibly challenging to create super-concise ones, because dementia impacts so many different aspects of people’s lives and the consequences for providing care and support are broad – and as our report indicates, very diverse.
For our report, we have developed our recommendations by chapter and also by the different lenses that could be considered for optimizing our systems: Alzheimer Society systems, health-care systems, various levels of government, and researcher systems too.
For example, we need health-care systems to educate care providers in delivering holistic, integrated dementia diagnosis and care that recognizes differences in sex, gender and intersectional identity. We need to design all of our support systems in a person-centred way that addresses the varying needs that different communities have.
Many areas in dementia research should also aim to be more inclusive. We need to not only understand how dementia impacts people generally but also how dementia impacts different people in different ways.
There is no universal experience with dementia – a fact a researcher Tom Kitwood (famously, at least in our field) put as “If you’ve met one person with dementia, you’ve met one person with dementia” – so we need to improve our understanding of the variability of dementia experiences and care needs. This can be as “simple” as doing better at understanding sex and gender differences in dementia, but we also recognize that what is essential are intersectional approaches that simultaneously consider multiple aspects of a person’s life and the link between those aspects and various health inequities.
Question 5: Where can people go to learn more about the Landmark Study and the work of the Alzheimer Society of Canada?
Both of our Landmark Study reports to date are found on our website. Report 1, Navigating the Path Forward for Dementia in Canada, is atalzheimer.ca/landmarkstudy. And Report 2, The Many Faces of Dementia in Canada, is at alzheimer.ca/manyfaces.
We are currently working on Report 3 about the economic impacts of dementia. That report should be coming out in 2025.
Also on our website, you can find information about dementia, our programs and services, the dementia research we help fund, and how you can support the work we do at the Alzheimer Society, if you wish.
If you need assistance related to dementia for yourself or a family member or friend, please visit alzheimer.ca/find to contact the Alzheimer Society in your region. There are offices across the country, and your area staff will be able to link you to the right information and the available local resources.