Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue No. 2 - Evidence - March 9, 2016
OTTAWA, Wednesday, March 9, 2016
The Standing Senate Committee on Social Affairs, Science and Technology met this day at 4:39 p.m., to study the issue of dementia in our society.
Senator Kelvin Kenneth Ogilvie (Chair) in the chair.
[Translation]
The Chair: Welcome to the Standing Senate Committee on Social Affairs, Science and Technology.
[English]
I'm Kelvin Ogilvie from Nova Scotia, chair of the committee, and I'm going to invite my colleagues to introduce themselves, starting on my left.
Senator Eggleton: Art Eggleton from Toronto, deputy chair of the committee.
Senator Merchant: Hello. Pana Merchant, Saskatchewan.
Senator Raine: Nancy Greene Raine from B.C.
Senator Frum: Linda Frum, Ontario.
Senator Seidman: Judith Seidman from Montreal, Quebec.
The Chair: Thank you, colleagues.
We are starting a new study, and I'll just make sure we have, for the record, the basis of this study that we'll be looking at for the next while.
On February 23, 2016, the Senate adopted an order of reference authorizing this committee to examine and report on the issue of dementia in our society, specifically that the committee review programs and services for people with dementia and the gaps that exist in meeting the needs of patients and their families, as well as the implications for future service delivery as the population ages; that we review strategies on dementia implemented in other countries; that we consider the appropriate role of the federal government in helping Canadians with dementia; and that we submit our final report no later than January 31, 2017.
Today the committee will launch the study by hearing from officials from the Public Health Agency of Canada and the Canadian Institutes of Health Research. So without further ado, I'm going to welcome our two witnesses, and by prior agreement, I will invite Dr. Yves Joanette, who is Scientific Director of the CIHR Institute of Aging and Chair of the World Dementia Council, to speak. He is with the Canadian Institutes of Health Research.
[Translation]
Dr. Yves Joannette, Scientific Director of the CIHR Institute of Aging, Canadian Institutes of Health Research: Thank you very much for the invitation to appear before the committee on the critical question of dementia. I understand that some members of this committee are familiar with the work of the Canadian Institutes of Health Research, the CIHR. As the scientific director of one of the CIHR's 13 institutes, the Institute of Aging, I am extremely honoured to be here on behalf of the CIHR in order to contribute to the committee's important work.
[English]
First, I would like to share with you what dementia is. I'll provide a brief overview of dementia and its causes. Dementia is a clinical condition characterized by the slow and progressive impairments of memory and other cognitive functions, accompanied by personality and mood changes. It is what we call a clinical syndrome or a set of clinical signs. Dementia itself is not a disease but the expression of slowly progressing diseases in the brain.
The majority of dementias are due to a disease called Alzheimer's disease, about 55 per cent to 60 per cent, which is a disease progressively caused by the degeneration of cells in the brain, a so-called neurodegenerative disease. Alzheimer's disease is not the only brain disease causing dementia, and most of these diseases are also mixed with some degree of vascular disease.
Why people get these diseases is still unknown. Only a very small proportion is truly hereditary. In some cases, genetics may tell the story, but the real cause is probably a multitude of interacting factors that are still to be discovered. Also, the disease causing dementia typically starts 20 to 25 years before any clinical sign starts to appear. Therefore, stopping the disease right at the start or developing a drug or intervention that can stop or slow down the disease causing dementia is extremely complicated.
Dementia is, in fact, the health factor most feared by younger adults when they think of aging. Dementia is not rare. It effects more than 7 per cent of Canadians older than 65, and at 85, it's more than 35 to 40 per cent, making age the main risk factor for dementia.
Notably, dementia is much more frequent in women than in men and not only because they have longer life expectancy. Women represent 70 per cent of the those living with dementia and 80 per cent of the caregivers to those dealing with dementia.
The number of individuals with dementia is booming. From 2011 to 2031, the number of Canadians with dementia will double. Worldwide prevalence of dementia is currently estimated at 45 million people. Approximately every 3 seconds, someone is diagnosed. This means that the number will reach over 75 million in 2030 and over 135 million in 2050.
[Translation]
What is CIHR doing to face the challenge of dementia? As you know, CIHR is the federal funding agency supporting research excellence across all dimensions of health research, from basic biomedical research to population health and social aspects of health. It is composed of 13 institutes, each one supporting research initiatives to tackle specific health issues.
As scientific director of CIHR's Institute of Aging, I am pleased to say that we are doing a lot to support research evidence on a wide range of conditions associated with aging, including dementia, and to promote healthy aging. Over the past five years, CIHR has invested over $183 million in dementia research, including over $41 million in 2014-2015 alone.
This funding supports research that makes a difference to Canadians. For example, in diagnostics, for both patients and caregivers. Doctors Nasreddine and Chertkow from Montreal introduced the Montreal Cognitive Assessment test, the MoCA. With this tool, clinicians are able to diagnose even milder forms of cognitive impairments than before and cut the assessment time down from over an hour and a half to 10 minutes. Now freely accessible on the web, the MoCA is used in over 100 countries, is available in over 40 languages, and is improving health care systems around the world and bringing international recognition to Canadian research.
Dr. Keefe in Halifax turned her attention to the sometimes overlooked needs of family caregivers of those with dementia. She co-led the development of the C.A.R.E tool, a psychosocial questionnaire that helps identify the complex needs of family caregivers and those at risk. The C.A.R.E tool has helped influence policy development and support programs for caregivers.
[English]
In addition to providing funding to researchers that come to us with innovative ideas, CIHR provides a vision to address this global challenge. The Dementia Research Strategy represents the research component of our National Dementia Research and Prevention Plan announced by the Government of Canada in September 2014.
The strategy aims to enhance collaboration between researchers, universities and research centres and to promote the sharing of research platforms and the dissemination of the results to the public, to clinicians and to policy-makers. It aims to provide research evidence in three key areas: preventing the disease from occurring, delaying or stopping the progression of the disease, and improving the quality of life for those living with dementia and their caregivers.
The strategy has two complementary components. The first one is domestic. The Canadian Consortium on Neurodegeneration in Aging it is called. This was launched on September 10, 2014, and this consortium brings together over 350 Canadian researchers across the areas of research I just mentioned. Over five years, approximately $32 million will be invested in this consortium by CIHR and its 14 partners.
Through the CCNA, researchers are now able to work collaboratively on important questions, such as the genetics of the brain diseases causing dementia, the impact of cognitive stimulation to delay the onset or progression of dementia, the specific question of dementia in indigenous populations and even very practical questions such as driving and dementia.
Eight research platforms will be shared by the researchers from coast to coast, including a first-time harmonized brain bank as well as a cohort of volunteers with dementia, in order to facilitate the conducting of clinical trials to expedite the testing of possible drugs to slow down or stop the progression of the disease.
The consortium also contains a number of cross-cutting themes, of which the most unique is the women, gender and sex platform, which ensures that the research done in the consortium, from genetics to social aspects of dementia, includes a sex and gender dimension. We have to understand why women are more prone to dementia than men.
The consortium also has an important role in getting research evidence to the public, to clinicians and to policy- makers.
Mr. Chair, I have brought the committee a small postcard in both official languages which gives an overview of this unique consortium.
This type of research matters to Canadians. For example, being able to travel distances in Canada is a concern. Rural and remote communities face extra delays. When it comes to getting a diagnosis of dementia, by the time they have navigated through the web of referrals and appointments, often at a distance, it could be more than a year.
To address these real issues, Dr. Debra Morgan and her team developed the rural and remote memory clinic in Saskatoon, a one-stop facility where patients go through a series of tests and see dementia experts all in one day and get their diagnosis and treatment. More than 400 patients have been treated here, and close to 1,000 family members have received support services. Through the CCNA, Dr. Morgan and her team will be conducting further research into issues in dementia care for rural and indigenous populations.
This is not enough. Dementia is a huge global challenge. The World Health Organization recognizes dementia as the most important global public health challenge. The World Dementia Council is clear on the fact that a global, collaborative research effort is needed because no country alone will be able to break the code and solve the puzzle of dementia.
This is why we have a second component of our research strategy, which is to participate in collaborative international research programs to bring our Canadian researchers together with their colleagues of the world. We have invested in programs with China as well as a worldwide initiative with the United States, but one of the most impressive joint international programs started in Europe.
The EU Joint Programme — Neurodegenerative Disease Research, or JPND, is the largest global research initiative supporting multinational research teams to tackle the challenge of neurodegenerative diseases such as Alzheimer's. It now involves 30 countries, most of them in Europe. CIHR brought Canada in as the first non-European country to become a full member of this initiative, and we recently inspired Australia to do the same.
Through a JPND funding initiative, Dr. Judes Poirier from McGill University in Montreal is working with researchers from Sweden, Denmark, Finland, France and Germany to improve how existing biomarker tests for the earlier identification of Alzheimer's and Parkinson's diseases are performed and to develop new tests and find better biomarkers of disease.
This fundamental research will have huge impacts on clinical research and the development of new drug candidates for those diseases, including Alzheimer's disease.
[Translation]
In conclusion, as you can see, CIHR supports high-impact research on dementia and leads Canada's national and international research efforts in this field. We are very proud of the contribution Canadian researchers are making both in Canada and globally.
And a global approach is necessary because I cannot emphasize enough that this is a global problem. In this regard, I have recently been elected chair of the World Dementia Council. This group aims at supporting the global inter- sectorial actions that will accelerate the identification of drugs and other interventions for those living with dementia, enhance the use of open-access, big data in research, identify new innovative sources of funds for innovation, ensure the sharing of the best practices in adapted care, and accelerate the risk reduction strategies.
[English]
To look at it from one last perspective, according to Alzheimer's Disease International, if the global burden of care for Alzheimer's were a country, it's economy would be valued at more than $800 billion, in fact $1 trillion in 2018, the eighteenth-largest economy in the world. The problems of Alzheimer's disease are bigger than any of us, so we are working together because this is a problem we can't tackle alone.
Mr. Chair, thank you again for the opportunity to share our work with you, and I look forward to your questions.
The Chair: Thank you, Dr. Joanette.
I will now turn to Rodney Ghali, Director General, Centre for Chronic Disease Prevention with the Public Health Agency of Canada.
Rodney Ghali, Director General, Centre for Chronic Disease Prevention, Public Health Agency of Canada: Thank you for inviting me to today to speak to you about dementia. As you know, it is a complex and significant public health challenge that is important to all Canadians.
[Translation]
Given its importance, we were pleased to hear that the Senate Committee on Social Affairs, Science and Technology is undertaking a study on the issue of dementia in Canadian society.
[English]
In Canada seniors are the fastest growing age group, shaping a significant demographic shift in our population. As the population ages, the number of Canadians affected by dementia will increase. In fact, based on the Public Health Agency of Canada's most recent data, it is projected that the number of Canadians aged 40 and older living with Alzheimer's disease and other forms of dementia is expected to climb from 395,000 in 2016 to 674,000 in 2031.
It is important to note, however, that although age is the greatest risk factor of Alzheimer's disease, dementia is not a normal consequence of aging. In addition, while less common, the early onset form of dementia has been diagnosed in Canadians who are in their thirties, forties and fifties. Dementia is a health condition with important social and economic implications, and its effects are wide-ranging and have a significant impact on those living with the condition, their families and their caregivers.
As the number of people living with dementia increases, society will need to consider the needs of those affected — their circle of care — over the long term. People living with dementia tend to require increasing levels of care, with family, friends and neighbours investing approximately 74 hours per week in informal care per affected individual.
Caregivers for people living with neurological conditions such as dementia compared to those with other diseases tend to provide more hours of support and are twice as likely to experience caregiver distress. Economically speaking, in 2011 Alzheimer's disease and other dementias cost the Canadian economy $8.3 billion in direct costs alone. By 2031 the direct health care sector costs of dementia are projected to be as high as $16.6 billion annually.
With the emergence of these trends over the past few years, there has been increasing attention in Canada and internationally on how best to address this growing public health challenge and reduce the burden on individuals living with dementia as well as on their families and caregivers.
The Government of Canada has been a significant contributor, both domestically and internationally, to make a difference in effective treatment and prevention, guided by the National Dementia Research and Prevention Plan that my colleague just mentioned. The plan, released in 2014, set the foundation for work undertaken by the government in collaboration with other government stakeholders to make addressing the issue of dementia a public health priority. A central pillar of this plan has been a significant investment in collaborative research, for which Dr. Joanette has already provided an overview.
Internationally, Canada participated in December 2013 at the G8 dementia summit in London, England, which was dedicated to seeking heightened international collaboration to face the growing worldwide challenge of dementia. At the summit Canada joined forces with its G8, now G7, counterparts and endorsed a declaration with the aspirational goal of finding a cure or a disease-modifying therapy for dementia by 2025.
The commitments made at the summit were strengthened at the First WHO Ministerial Conference on Global Action Against Dementia in Geneva, Switzerland, in March 2015. Canada was one of 80 countries to adopt a call for action to advance efforts on dementia and maintain it as a priority on national and international agendas. Later this spring the government will be co-sponsoring with Switzerland a side event on Alzheimer's and other related dementias during the first day of the Sixty-ninth World Health Assembly in Geneva. The side event will take the form of a panel discussion on opportunities for a more concerted and united global response to maximize impact on this public health issue.
Here in Canada the Public Health Agency of Canada's activities in dementia are focused in three main areas: first, surveillance and monitoring; second, pursuing innovative partnerships to improve quality of life; third, promoting awareness and reducing stigma.
Treatment and care of dementia, as with most direct health care services, falls primarily within the jurisdiction of provinces and territories. We expect to strengthen federal-provincial-territorial collaboration on dementia through the development of shared health priorities and opportunities to improve areas such as home care.
An important part of the federal contribution to addressing dementia has been to increase the understanding of neurological conditions, including dementia, their impacts on Canadians, the risk factors and use of community and health care services. The government invested $50 million in a groundbreaking four-year national population health study on neurological conditions, led by the agency and the Neurological Health Charities of Canada.
As a legacy of this study, we are working with the provinces and territories to establish ongoing surveillance of dementia as well as three other neurological conditions — epilepsy, multiple sclerosis and Parkinson's — through the existing Canadian Chronic Disease Surveillance System. Through the system we will monitor the long-term trends of neurological conditions in the Canadian population. Analysis and reporting on dementia over time tells us how we are doing in our collective efforts to reduce dementia as well as the ongoing pressures and demands on our systems that we need to manage. The Public Health Agency plays a lead role in reporting on these trends across Canadian jurisdictions, and we expect to begin reporting on an annual basis in the spring of 2017.
Research is also showing that dementia shares many of the same risk factors as other chronic diseases, such as Type 2 diabetes and cardiovascular disease. At the Public Health Agency, we are investing in new and innovative partnerships and approaches to mitigate these impacts that the common risk factors have on chronic diseases, and we are currently assessing opportunities to link these efforts to address some forms of dementia.
[Translation]
In the absence of a cure, we recognize that there is a need to develop innovative approaches and supports to improve the quality of life for Canadians living with dementia and their caregivers. A significant part of this includes addressing any stigma and preconceived notions about what it is like to live with dementia or to care for someone who has dementia.
By better understanding how dementia affects people's lives from its early stages onward, as well as the potential risk factors, we can better support people affected by dementia in maintaining their independence and quality of life.
[English]
In June 2015, Dementia Friends Canada was launched in collaboration with the Alzheimer Society of Canada. Modelled after similar programs in Japan and the United Kingdom, this national, digitally based initiative is engaging Canadians in understanding what dementia is and how to be supportive of those affected. With a focus on using social media and other digital media, we are reaching Canadians where they work and live, starting an important conversation that helps Canadians to better understand what it means to have dementia and what steps can be taken to help those living with dementia to feel connected and supported in their communities. I would encourage everyone here to visit the Dementia Friends Canada website at www.dementia friends.ca and to sign up to become a dementia friend. I'm pleased to say that Dementia Friends Canada has already registered over 17,000 dementia friends, and we are working hard, with the Alzheimer Society of Canada, to reach that goal of 1 million by the end of 2017.
It has been a hallmark of the government to recognize that complex health issues, such as dementia, cannot be effectively addressed without collaboration and partnerships from across multiple sectors. In this regard, through the Public Health Agency of Canada, we are making investments in technological innovations for dementia, through a role as a platform partner in the Canadian Centre for Aging and Brain Health Innovation. Innovations in brain health applications and technological devices hold tremendous promise in supporting the ability for people to age in a setting of their choice, while maintaining their well-being and independence for as long as possible. We are investing $42 million over the next five years, beginning this year, in Baycrest Health Sciences in Toronto, a global leader in geriatric health care and brain health research, innovation and education. The federal government is the largest of more than 40 funding partners from the public, business, academic and not-for-profit sectors. Funding is provided by platform partners, which, in addition to the Public Health Agency of Canada, include the Baycrest Foundation. The Ontario government will support the development, testing and scale-up of products and services to support brain health and aging, with a focus on dementia. Once fully operational, it is expected that the centre will be involved in 10 to 15 projects on an ongoing basis. Some examples of the projects include innovations such as Cogniciti, a validated online cognitive health and memory assessment tool; the Virtual Brain, an integrated computer model to test experimental brain therapies; and a geriatric Telehomecare project that uses technology to improve access to geriatric services for homebound seniors. These projects demonstrate a unique opportunity to translate basic research into practical and useful tools that are tested in real-world environments to improve diagnostics and quality of life.
[Translation]
We believe that these investments and initiatives build on the commitments made in the national dementia research and prevention plan. However, there is a great deal that we still do not understand about the causes, risk factors, and effective prevention and treatment approaches.
[English]
The federal government's dual role on dementia research and prevention, aimed at both understanding how to potentially delay the onset of dementia through healthy living and improving quality of life of those living with dementia and their caregivers is a key to enhancing care and well-being for Canadians.
In closing, I would like to thank the Standing Senate Committee on Social Affairs, Science and Technology for examining this issue of dementia in our community. We are proud of the investments and strategies that I have highlighted for you today. While we are making inroads in addressing the challenges presented by dementia, the reality is that it will take time and a concerted effort from all sectors to see significant progress.
I'm happy to answer any questions that you may have.
The Chair: Thank you both very much. We welcome both of your organizations back to our committee. We have become quite familiar, over a period of time, on a number of different studies. Thank you very much for being here and for starting us off in this area. I am going to turn to my colleagues now for questions.
Senator Eggleton: Thank you very much both of you for being here. I think it's particularly appropriate in your case, Dr. Joanette, as the Chair of the World Dementia Council, to be our leadoff speaker here. Congratulations on that recent appointment. I think we share with you the concerns about dealing with this matter, particularly since it is increasing at a very rapid rate as the population ages as well.
As you may know, this committee just completed a study on obesity. An article in the Guardian was brought to my attention. This actually goes back about three years. It's suggesting that there is a strong association between poor diets and poverty and dementia. They go on to say that a large body of evidence now suggests that Alzheimer's is primarily a metabolic disease. Some scientists have gone so far as to rename it Type 3 diabetes.
It goes on at some length to talk about this connection, saying that the association between Alzheimer's and Type 2 diabetes is long established. Type 2 sufferers are two to three times more likely to be struck by this form of dementia than the general population.
It finishes off by saying that plenty of research still needs to be done, but, if the current indications are correct, Alzheimer's disease could be another catastrophic impact of the junk food industry and the worst discovered so far. However, it does finish up by saying that we cannot yet state unequivocally that poor diet is the leading cause of Alzheimer's disease, but we can say that the evidence is strong and growing. If ever there was a case for the precautionary principle, this is it.
That's three years old. What is the latest on that connection?
Dr. Joanette: Thanks for raising the fact that there is a complex set of factors that is triggering the cascade of events in the brain that results in this neurodegenerative disease. In this cascade of events, the factors are not clearly identified. Of course, what you mention is certainly one important factor that has to be looked at. Low-grade inflammation also, vascular diseases, even if they are clinically controlled and, of course, all this in relationship with some genetic predisposition or sensitivity.
If you take all of this, the problem is that this triggering factor and the exact role of each of those factors is not well known. What complicates things is that, as I mentioned, this starts not the day before there is a diagnosis, but this cascade of events starts 20 to 25 years before in the brain. If someone declares dementia at 65, it means that, in the forties, the disease has started somewhere in the brain. We can see it. Special research used neuroimagining tests. We can start to see the damage moving forward, but the exact combination of all those factors causing this triggering of the cascade of events is still to be understood. Certainly, diabetes is among the suspected factors.
Senator Eggleton: So are the research teams that you described in your presentation looking at the connection between unhealthy food and Alzheimer's?
Dr. Joanette: Exactly. The reason why we did more than simply support research on diabetes and dementia and vascular disease and dementia in isolation and we came up with the Canadian consortium was to bridge all these researchers together.
In the Canadian consortium there is one team working on nutrition, diabetes and dementia, but they are speaking with the others. The role of the consortium is to create this innovative synergy with all the others. For the first time all these researchers will speak to each other, and then we might have an overall view.
Senator Eggleton: Is this something that came out of that G7 or G8 statement? Has this led to the collaboration, or is this a collaboration you set up yourself?
Dr. Joanette: As the lead of dementia research strategy at CIHR we felt, with my co-lead Dr. Phillips from Vancouver and our teams, that we had to support a collaborative approach here in Canada. It happened to be extremely timely with reference to the G8 or G7 recommendation and the creation of the World Dementia Council.
In fact, this Canadian consortium is now being considered by other countries as the way to go. As an example, the U.K. is preparing a large investment to create a dementia research institute, 150 million pounds, and they are interested in exploring the Canadian model.
Senator Eggleton: Mr. Ghali, you mentioned a number of things that the Public Health Agency is doing: surveillance, monitoring, pursuing innovative partnerships, improve quality of life, et cetera. You pointed out that treatment and care of dementia itself is a provincial responsibility, but you mention the home care and the care of families for people who have dementia. What can the Public Health Agency do in terms of that? There are a lot of family people who become stressed out, very worried, anxious, and they need respite. What can the Public Health Agency do regarding these informal and family caregivers?
Mr. Ghali: What you are raising is an important question. As I highlighted in my remarks, I think the network of informal caregivers is robust in Canada and growing.
As we see the incidence of dementia growing, it is something that as federal and provincial governments, and as a whole society, we need to be very cognizant of. As we start thinking about some of the investments we've made, say in Dementia Friends Canada, it's a first step in terms of awareness-raising that allows Canadians writ large to understand what dementia is, what we can do to help those living with dementia and those caring for those living with dementia — the small things we can do. This notion of sharing the most basic information is an important step that here at the agency we view as primordial to our role.
As we start moving out from that circle and looking at the investments that we have, and setting up the Canadian Centre for Aging and Brain Health Innovation is looking at how we can start leveraging technology and partnerships in a way that will also start assisting informal caregivers. A few of the examples I was talking about are starting to leverage this notion of trying to create communities, such as the Telehealth model, in helping the informal caregivers within their environments to start connecting with others and health care professionals in a way that looks at the provision of care in a very different way.
We view those investments as important, and one which is recognized in the complex environment in which we live.
Senator Seidman: Thank you both very much.
I'm trying to understand the role of the federal government, because of course we're dealing with health, and when we deal with health it's complicated because of jurisdictional issues, if we try to look at the role the federal government can play, and I'm thinking now about a couple of things that I could get some clarification on from both of you. We have many different aspects to the whole here, and you have listed an awful lot of programs — most of them research, if I understood correctly, but a lot of programs. You both talked about the need for collaboration, international and national, and so I'm trying to understand all these pieces and how they fit together, and specifically how it relates to the federal government.
For example, there is the National Dementia Research and Prevention Plan that was introduced in 2014 by the Minister of Health. It covers a very broad base of funding for various types of research. By the same token, there have been calls by a lot of stakeholder groups for a national dementia strategy in Canada.
Keeping that in the back of my mind, these calls for a national dementia strategy, looking at what was announced in 2014 with the National Dementia Research and Prevention Plan, the role Canada plays nationally and internationally, how do we put all these pieces together? Would you say that a national dementia strategy would have some positive impact on what we're trying to achieve in this area, and if so, how would it strengthen what we currently have? I know it's a big ask, but let's see what you can tell us about it.
Dr. Joanette: I can start with the research perspective. In fact, just to clarify things, the research component of the national prevention and research strategy is in fact supported and led by the dementia research strategy of CIHR. These are connected. What we're doing at CIHR is trying to bring together, domestically, internationally and also with the provinces. I didn't mention it, but in this Canadian consortium there are 14 partners, and among them are many of the provincial funding agencies, including the Ontario Brain Institute, the FRQS, the Michael Smith Foundation, the New Brunswick and Saskatchewan family. They are all there, and it would be a pity to have parallel actions here, so everything is tied up in a nice way.
We even have, at the CIHR, a table in order to discuss with other players in research in Canada, such as Baycrest, which we just heard about, but also some of the national centres of excellence, such as AGE-WELL or the Canadian Frailty Network. We called this the Cognitive Impairment in Aging Strategy and Partnership in order to have a coherent approach and complementary actions.
From a research perspective, we need a national plan: We have it, and it's being slowly implemented in a way that positions our country well.
Mr. Ghali: Just building on your points, from a federal perspective, under the national research and prevention plan I think what you're seeing on the research side is the largest federal component to the landscape of dementia across the country, supplementing that with the work that we're doing at the agency in terms of surveillance, some targeted partnerships and the awareness raising and reducing stigma. That encapsulates a lot of the federal effort into the domestic landscape.
What you are highlighting, senator, in terms of the important discourse going on right now across the country around the need for a national dementia strategy is an important discussion to have. We need to let that play out. We need to recognize that provinces and territories are also having that important discussion. We see some provinces that have their own provincial dementia strategies. I think some provinces have dementia components as part of their aging strategies.
To pick up on one of the key words in your question, it's this question of collaboration. I think what is really important that you're hearing from me and from Dr. Joanette — and I would say from the majority of partners we work with — is that absolutely the key is collaboration and alignment around these key objectives.
I would say certainly from the work we are doing, and certainly the work you are doing, there is clarity of purpose within the efforts we are making. I think that's where we see our efforts best placed.
Senator Seidman: Who has determined the clarity of purpose?
Mr. Ghali: I will let Dr. Joanette speak on the research side. That is probably the main component here.
Dr. Joanette: Senator, of course we listen to Canadians, to clinicians. For instance, when I was nominated in 2011, we did a Speaking of Aging Tour of all Canada in a series of town halls with the public, the policy-makers and all the stakeholders. We had about 15 town hall meetings across the country, including one with representatives of the indigenous population in Winnipeg, and we heard what were among the most important questions, and cognitive impairments in aging really stood very high in the list.
It was set by Canadians, and then because there were lots of actions going on here and there, and because there was some lack of collaborative approach in this country, we put together this Dementia Research Strategy. It's a collaborative layer you bring to efforts that were already there because, as you probably know, Canada is well-known for its research capacity and excellence in brain studies, but there was this need for collaboration. I strongly believe that that's what we did. It had to extend internationally also because no country alone will be able to do this. As my colleague said, senator, the words "collaboration," "alignment" and "convergence" are really important here.
Senator Seidman: I just want to be sure. What you're saying then is that in essence we already have de facto a national dementia strategy; is that what I'm hearing from you? I just want to be sure.
Dr. Joanette: From a research perspective I would say yes.
Senator Seidman: From a research perspective, okay.
Mr. Ghali: From our side, in terms of the data gathering and surveillance perspective, I would echo Dr. Joanette's comment that we arrived at the place that we're at based on extensive collaboration over the length of that four-year study that we did and the ongoing surveillance as a result of strong collaboration with Neurological Health Charities Canada, which comprises over 20 of the major health charities across the country.
Senator Merchant: I am going to concentrate a little bit on the Saskatoon project. I don't know if you said RaDAR, but you mentioned funding. Did RaDAR start out with funding from CIHR? Because I also understand that the provincial ministry of health is funding the clinic. Can you clarify a little bit how that has worked?
Dr. Joanette: I'm a researcher at the University of Montreal, and it's rare that researchers would have only one source of funds. We have to diversify, and also there are convergences of provincial, sometimes charities, sometimes the Alzheimer's association, the CIHR, so all this, of course, plus the provincial contribution for the clinic, which is not research but services, is probably converging to explain the Saskatoon experience. I think it's a multitude of convergences.
Where we are kind of proud is that we added some resources, but also we provided this example to be an example for the rest of the country by bringing it into the consortium so that the expertise developed in Saskatoon can now be shared instead of trying to reinvent the wheel everywhere else to enhance the quality of services to rural and remote communities.
Senator Merchant: I think that's very good in Saskatchewan because we do have an aging population and an indigenous population, and also we have distances.
Perhaps we'll have people from the clinic appear before us, but I would like to ask a few questions preliminarily. While you have a neurologist, a neuro-psychologist, a clinic nurse, a psychometrist, a physiotherapist and a dietitian, and also the family is involved in a one-day clinic, you bring in patients to avoid having them come from distances repeatedly by giving a day to a patient. I may be mistaken, but I think I read somewhere that they do two patients a week.
Dr. Joanette: I cannot provide details because I am not aware of them, but I would be happy to do so after. However, all the actors you mentioned, including the family, are crucial in a good practice, diagnosis and follow-up for someone who might have been and will have to be confirmed to have dementia, and I think the coordination that this clinic did in order to minimize the trips is remarkable.
Senator Merchant: Maybe you already have that.
The Chair: These are issues we can discuss later. Let's get the information out of the witnesses.
Senator Frum: Dr. Joanette, let me also congratulate you on your election as Chair of the World Dementia Council. I'm sure you'll make Canada very proud. It makes me proud to know that you're in that position.
You talked about the numbers of this disease booming. Is that simply a matter of aging demographics, or is it something else as well?
Dr. Joanette: Your question, senator, is very relevant. It's not thought to be anything more than the impact of demography, and you have to understand that the aging of the population in Canada and elsewhere is, of course, the life expectancy. However, the segments of the population that are booming in terms of numbers are the oldest among the older, and so the 85 and plus. In fact, centenarian is the booming segment of our population. And because the risk increases exponentially with age, then you have an aging of the population, but since it's the oldest segment that is booming, then you have this immense increase in the diseases causing dementia. It's the demography, but understanding that the demography is not linear here, it's the oldest that are booming.
Senator Frum: You spoke about the fear that young Canadians have about this disease. I would think that the reason people have fear is because of a perception that it is a random, accidental event that can happen to your brain. And, Mr. Ghali, you spoke about stigma. I suppose if there's stigma it's because people think it is a preventable disease, following along the lines of Senator Eggleton's questions, and there's stigma because you didn't do enough Sudoku, you didn't eat properly or you didn't do the crossword.
In terms of where the research is now, that it is preventable, is it something we can control or not? Which way does the research tilt?
Dr. Joanette: We can do something, and research provides evidence. For instance, my colleague Miia Kivipelto, from Finland, has provided a large review study on the risk reduction. We cannot totally prevent the disease from occurring, but we can diminish the risk of developing dementia in two ways. The first one is diminishing the risk of those diseases and conditions, as Senator Eggleton has mentioned, that seem to be contributing to the ignition of the cascade of events. In that sense, what's good for the heart is good for the brain. In nutrition, physical exercise and so on, you can diminish the risk of creating those conditions that will trigger the disease occurring.
This is one aspect. The other aspect is, unfortunately, disease will occur, so is there a way to diminish the risk of developing dementia, and it's not part of aging but it's frequent. There is, and we now know, supported by research, that you can increase the ability of your brain to compensate for the impact of the disease on your cognition. In other words, you can push back in time the day dementia will come, because your brain is battling against the disease — the disease is there; it doesn't change the disease — but one way to do it is to maintain cognitive activity throughout your life and enhance it. In fact, there are strategies, such as learning a second language. Manipulating a second language is known to potentially delay, by a couple of years, the first signs of the disease without affecting the trajectory, which will end the same. It diminishes the number of years someone will live with dementia. These are two methods of risk reduction.
Senator Frum: I thought that if you are already bilingual, as you are, your chances are lower than mine as a unilingual person.
Dr. Joanette: I speak Spanish as well.
Senator Frum: Ah, trilingual. You're good, you're clear.
Senator Raine: Thank you very much, and I too am looking forward to this study as it goes on because I think it is very important for Canadians for many reasons.
I would like to find out, probably from Dr. Joanette, are there statistics out there that could show the incidence of Alzheimer's or dementia over say the last 30, 40 years, and correlate that with other changes in our environment in terms of nutrition, physical activity and things like that? I would be very happy if there was something that said that when kids become less physically active because they are on their devices, maybe the brain is working more. Is there any study going on about that, looking down into the habits of our younger citizens and what lies ahead for them?
Dr. Joanette: Thanks for asking, senator. In fact, the Canadian Institutes of Health Research is also sustaining the Canadian Longitudinal Study on Aging, the CLSA. The CLSA has now recruited 52,000 people, aged between 45 and 65. Unfortunately we could not go further down the ages because it would have cost too much to operationalize it.
This is exactly the kind of study that is needed, because this study is looking longitudinally at given individuals for 20 years. Of course some of these people unfortunately may develop dementia, and we will be able to see their environment and life habits because they are looked at from many points of view, including the physical environment, work habits and of course their health. Blood samples and so on taken will be taken every three years. That's the kind of study that has now started and will shed light on what can develop or facilitate this.
Now CIHR is considering investing in an even earlier study on the early determinants of health, which could look at young kids. However, before they reach their later years it's going to take some time, but ultimately you need to invest today in order to maybe have such a cohort which will be known in 50 or 60 years to see the relationship. Currently we do not have that kind of information.
Senator Raine: Thank you.
The Chair: I'd like to follow up on the last two questions in this area. I was going to ask you if there is a short list of things that have been identified that delay the onset of dementia. I think you've answered that in a way, that diet, exercise and maintaining cognitive ability appear to have at least a delaying impact. Did I hear that correctly?
Dr. Joanette: Yes, indeed. It has the potential to either diminish the probability or susceptibility of those conditions igniting the neurodegenerative disease to occur, or bringing more power to your brain, cognitive power, we call it "cognitive reserve" in order to counteract a potential disease, yes.
The Chair: I understand the possibility of delaying onset. If you look at the numbers overall, over all ages, does it appear that people who have maintained a healthy lifestyle throughout their life have a lower probability of getting it altogether? Or is it simply a delay of onset?
Dr. Joanette: For the time being we are more on the delay side than the absolute incidence.
The Chair: Thank you. We are trying to get the background for our study, so subsequent witnesses will follow up again. That's extremely helpful.
I wanted to come back to Senator Seidman's questions and look at the issue of the relationship with what is going on now and the possibility of a national strategy.
I'll start with Dr. Joanette. Are there major research efforts on dementia occurring in Canada that are not part of your collaborative configuration of research efforts?
Dr. Joanette: Research efforts directly devoted to dementia?
The Chair: Largely involving a focus on dementia, yes.
Dr. Joanette: There are some investments of the Government of Canada through other channels which are partly supporting research on dementia. I could mention part of the funding of Brain Canada, part of the funding of some of the national centres of excellence and so on, but they are not mostly or all focused on dementia. The Cognitive Impairment in Aging Strategy and Partnership that we support in terms of a table of coordination ensures that there is coordination to some extent there.
The Chair: I'll turn to Mr. Ghali and ask it in a different way. In reading the background in this area, and I look at more of the social aspect of the issue, there is some evidence that the substantial proportion of people with dementia are not recognized in any special way in terms of how they are treated in care facilities and so on. That is to say, there is no particular effort set out to bring these people together in a social kind of environment that recognizes the challenges that they face as opposed to the general ward concept in these facilities.
Are there areas of activity in Canada looking at the way in which people are treated, housed, maintained, types of medical teams and so on, which are outside your collaborative efforts to look into this area?
Mr. Ghali: I would characterize my answer probably across a couple of different realms. Speaking from within the federal sphere, which once again is heavily focused on research, data, awareness raising and stigma reduction, there is a conglomeration of activities that you are highlighting that would occur outside the federal realm of responsibility.
As I mentioned from the provincial and territorial standpoint, they are putting in a lot of effort in terms of bringing the coherence that you are talking about to bear amongst their systems, both on the health and on the social services side. This came up in a few other questions too, that notion of different models of care out there. What is clear is that there is no one-size-fits-all solution. We need to be looking at the uniqueness of the issue at hand and the appropriate action. That's how I would answer that.
The Chair: I expected the latter part of your answer to be the case. I sense from your answer that there is not deliberate collaboration, coordination, collective of the data from the different areas you mentioned that are carrying out activities related to this, and there is not a national strategy to pull immediately together outcomes from each of those individual activities.
Mr. Ghali: I think it depends on what activities we are talking about. I can speak to my world in terms of data collection and surveillance. That is being done in conjunction with the provinces and territories. The ongoing data collection is certainly a collaboration.
On the other sides the collaboration would be occurring within or across jurisdictions. That would fall outside of our realm of responsibility.
The Chair: I think you have a best practices portal in the Public Health Agency. I assume it's broad-based as a portal. Is this a place in which the areas carrying out those kinds of research activities we're talking about that aren't formally coordinated could put their outcomes so that others would be quickly aware of best practices?
Mr. Ghali: I am going to defer to Dr. Joanette in terms of best practices on the research side and the translation side.
The Chair: Okay, and you will stick to the ones you were talking about.
Mr. Ghali: Yes, that's exactly it.
The Chair: With regard to those things, they could put those on your portal?
Mr. Ghali: I think you're right; there is a lot of good work out there. Without a doubt, there are opportunities to share those best practices. What we need to do is to figure out the best ways in which to share that.
Dr. Joanette: Thank you, chair, for allowing me to talk about the other important role of CIHR, which is not only to do the research and to support research and provide new knowledge but also to translate this into best practices. For instance, CIHR has a program called Best Brains Exchange. It's the name of the program; we don't exchange brains, strictly speaking. Any jurisdiction, organization or department can apply to get some support and have a privileged number of experts for, let's say, one or two days in order to really discuss what those policy-makers could maybe think of doing. For instance, in New Brunswick recently, there was a Best Brains Exchange, and the question was around dementia and Alzheimer's. CIHR provided support to a number of experts in order to have a meeting with the people at the New Brunswick government.
At the public level, we also have knowledge transfer, knowledge dissemination strategies, and we expect our researchers to share their results with the users. But we go further. For instance, in this Canadian consortium on Neurodegeneration in Aging, we have insisted that a knowledge transfer platform be built in, which is supporting the Canadian Dementia Knowledge Transfer Network, which is a series of websites for the general public for support in how to empower themselves, for risk reduction, how to better understand dementia and so on. These are very important aspects to disseminate what the best practices are according to research.
Senator Eggleton: The G8 summit that was held on dementia in December of 2013 put in its declaration that it had the aspirational goal of finding a cure or a disease-modifying therapy for dementia by 2025.
We've been hearing for years about cures for cancer, cures for this, cures for that. Is this wishful thinking, or is there some reason to be optimistic about this? Is it advancing along? That was 2013. We are talking about another nine years. Dementia — there are different kinds. Just dementia in general? Tell me more about this effort, and is it realistic?
Dr. Joanette: First of all, senator, you are totally right. Dementia is a basket of many different things because there are many different diseases causing dementia — Alzheimer's is one, frontotemporal dementia, Pick's disease. There are many diseases. In order to add to the complexity, even for one disease, like Alzheimer's, there are probably sub-types of Alzheimer's. From a process and biological mechanism point of view, there is probably a complexity there that is important to understand.
This declaration in 2013 at the G8 summit called by Prime Minister Cameron is, I think, reasonable. Not necessarily to find a cure because, in my mind, a cure is eradicating the neurodegenerative diseases totally, and this will probably take longer, but to have a disease-modifying treatment, which could be a drug, which could be a number of drugs playing on different aspects. For instance, we know that the HIV trajectory is not helped by one drug but by the three therapies. Imagine that maybe these diseases will need more than one approach, and maybe drugs will not be sufficient. Maybe cognitive or behavioural interventions combined with drugs will be modifying these trajectories and should be adapted to a disease or a subset of the disease.
You see, the situation is complex, but I think we can be optimistic because up until, let's say, three or four years ago, the research in this area was trying to maybe capture the process that causes dementia or Alzheimer's disease. Now research is much more knowledgeable that this is a large complexity to be embraced, and in that sense, I think we will be seeing disease-modifying solutions within this perspective by 2025.
Senator Eggleton: You mentioned drugs, but you also mentioned interventions. What form would the interventions take?
Dr. Joanette: Cognitive interventions meant for those who are captured right at the beginning of the dementia, before the clinical diagnosis of dementia can be applied. There is a zone here from normality to dementia, which is called mild cognitive impairment. When these people can be identified early, some cognitive interventions already tend to show that you can modify the trajectory and push the signs back a little bit.
It may be drugs combined with these interventions. It may be other kinds of intervention. This is a very hot area in research today.
Senator Seidman: Thank you both very much.
I'd like to come back to something that both of you spoke of. Mr. Ghali, you said in your presentation to us that you expect to strengthen federal, provincial and territorial collaboration on dementia through the development of shared health priorities and opportunities to improve areas such as home care.
Dr. Joanette, the CIHR Dementia Research Strategy that is posted online says that the goals of the strategy fall under the following three themes: one, primary prevention; second, secondary prevention; and third, quality of life.
Now I'm kind of connecting some dots here of quality of life and homecare issues that we heard from both of you, and I'd like to ask you this: How do you see that being tackled by the consortium that we have now for dementia research and the kind of overall umbrella that we have in this country because, clearly, if I think about aging, the demographic of aging, and I think then about dementia and the families that care for their family members who have dementia, there is no question in my mind that homecare, community care, would provide facilities that would much better serve the needs of these people through providing better quality of life. This is a very rambling question, but could you give me some indication of how you see that within the confines of your mandates?
Dr. Joanette: You're absolutely right; the research efforts are aimed not only at trying to understand how to prevent diseases causing dementia from occurring or how to slow down, stop or maybe reverse but are about the quality of life of those living with dementia today. One aspect is that in this Canadian consortium there are 20 teams under these three areas you just mentioned. I think team 19, if my memory is good, is exactly on how to optimize the care system to support the trajectory of someone living with dementia, from home support and staying at home with community- based services to, if needed, a little bit further and then long-term care facilities and so on. This is an area of importance.
There is another team in this group, which is also working on driving and dementia. I just mentioned that. This is very important, I would say particularly for men but also for women, particularly because we have a large country and we need to drive if we want to not be isolated and be able to stay at home. They are working on issues such as when to do it, how to do it, up until which point to drive and then the alternatives and so on. Dr. Gary Naglie from Toronto is leading that team. These are real, practical things.
Another team is working on the caregivers. We didn't talk a lot about the caregivers. Again, 80 per cent of caregivers are women, either a spouse or a daughter. Some of the daughters are in what we call the "sandwich generation," having to care for both parents and their children, and this is another important area. In fact, we also have a healthy and productive work strategy at CIHR meant for those challenges specifically. But this is another important aspect because we have to support the health and wellness of those caring for dementia because they are at risk. You could consider that one person diagnosed with dementia affects more than one person; it affects two, three or maybe more persons.
Senator Seidman: Mr. Ghali, how does the public health agency fit this kind of thing within their mandate?
Mr. Ghali: I think it's a great question. I will use some of what Dr. Joanette said as a bit of a jumping-off point. But I will pick up on a phrase that I used in my remarks around a circle of care. That is pertinent in answering your question. And that circle of care is quite large. We typically think of the individual living with dementia and their immediate caregivers, and what's really important once again is this concept of a whole society approach, and that's where the agency as well as CIHR and others have a very important role in this broad mandate in that.
As I mentioned, if we look at the broadest sense of that circle of care, what we're trying to do with Dementia Friends Canada, which is number one, is trying to impart the knowledge to the general population about what dementia is and trying to destigmatize it and trying to let people know what it is and what it's not and what to do when you encounter someone who may be showing signs of dementia. That is at its core the most basic kind of care we can give to our citizens.
As you start moving into that circle of care, the resources we are trying to push out there with our partners like the Alzheimer Society of Canada through the Dementia Friends Canada program are then starting to bring in the supports that, as Dr. Joanette pointed out, the caregivers and what they need to help provide them the knowledge, the expertise, knowing and recognizing full well that the majority of caregivers are still the informal caregiving network we see across Canada.
I think then, as we look at some of the investments that we're making through the Public Health Agency of Canada, obviously that Dr. Joanette is making through CIHR, it is looking at alternative modes of care, not just talking about the health care system but within the community. It is talking about some of the investments we have through Baycrest in setting up the Canadian Centre for Aging and Brain Health Innovation around geriatric Telehomecare. Really that is once again thinking about the geography of the country and the availability of services and recognizing mobility issues that individuals may have with advanced forms of dementia and trying to bring those services directly into their homes and leveraging the technology that exists within Canada in a way that will actually make a meaningful difference in their lives.
That's the role we are playing across different spheres through that circle of care, obviously in close collaboration with the research that's going on through CIHR and then basically collaborations with all of our partners.
Senator Raine: I read the background information that we've been provided. There are very few drugs that can be used to slow down the onset of Alzheimer's and nothing to stop it. Obviously it's in everybody's interests to get a diagnosis very early.
I've had a little experience with family members, and so the question is the people who are closest start to see that something is not right. Is there a way that they can tick a box on something that somehow people are tested early?
I was interested to hear you say that it may not change the day it ends, but it gives them a lot longer to be happy and well. Do you have any suggestions about that?
Just as an aside, if you google "do I have Alzheimer's" there are lots of tests online that you can try to see if you have Alzheimer's. Is there any validity to that?
Dr. Joanette: Thanks for the topic, Senator Raine. Of course identifying a nascent dementia as early as possible is important, even though, as you mention, I don't think we have a drug that is efficient in all cases. There is a little effect in some cases with the drugs used today, but the drug company could tell you they have invested billions and billions of dollars in negative clinical trials for the last 10, 15 years probably because of where the research was, but I think now we can be more optimistic at least on that side.
However, what you're mentioning is what could be done. Well, as my colleague Rodney Ghali said, we have to enhance the awareness of the population so that now someone can recognize. I think we all have some personal experience with people who have developed dementia, and the family, the close friends, can always say a posteriori yes, of course, during the last two or three years he or she was like this, like that. And I mentioned it's not only memory and cognition, it's also personality and emotions, so we have to enhance this. Research has to be more efficient in providing the checklists.
We can also think that in the future eHealth might be useful. For instance, there are people working on using what we use in our nearly everyday life, those little devices, and maybe the device could capture some kind of change in your habits in order to ring a little bell saying just make sure that something is not going on here.
Maybe technology will be helpful there as well. But currently one of the challenges in our environment is exactly what you refer to, senator, in the abundance of pretentious solutions to help you capture something on the Web. There are very few that are validated. Maybe they're good, but we don't know. Very few are validated. This is why efforts are made by a number of groups to do meta-analysis, to look at research and try to put a stamp, say validate, say this might be it.
McMaster University's portal on aging is doing that kind of work. The Global Council on Brain Health, which is supported by AARP, which is the American Association of Retired Persons, and Age UK are also going in that direction.
We will need more and more of those research-supported and -validated approaches, because currently there are lots of pseudo-solutions, and maybe some of them are good, but we don't know.
Senator Stewart Olsen: I think from the questions that you are being asked you can guess that we're just starting this study and we're struggling to find the way in the door. At least I am.
This question may seem a bit simplistic to you, but is dementia a disease or a condition caused by disease? If you could answer that, I have one other to follow with that.
Dr. Joanette: Senator, you're right in the question behind your question. Dementia is the clinical condition. Dementia is not a disease.
In fact, you will not see a lot of people ending their life because of dementia, whereas lots of people have dementia in their late life, not the majority.
The diseases that cause dementia are diseases that affect the brain in a progressive manner, neurodegenerative diseases, of which Alzheimer's is 55 or 60 of per cent. There are also vascular diseases and other types of neurodegenerative diseases.
Senator Stewart Olsen: Alzheimer's itself is a disease.
Dr. Joanette: Alzheimer's is a disease. We think now that it's probably a constellation of diseases, but whatever. It's a disease.
Senator Stewart Olsen: Because there are differing diseases that cause dementia, then I presume that the treatments are quite different in many of these cases. To me that would be more difficult for caregivers and the people around them to access how to treat this person. It's not Alzheimer's; it's vascular dementia. You can see the confusion. It's a vast area for people trying to cope with this at home.
I live in a rural area, and I don't think people understand exactly all these differences.
Dr. Joanette: Senator, there are indeed many diseases that cause dementia. But, generally speaking, a dementia is a dementia. The advice, attitudes, strategies and public awareness about dementia, even though there are of course little differences here and there, will be good for all dementias. There are diverse causes, but dementia is more similar than diverse in terms of its clinical manifestation.
Senator Raine: I was asking you about the drugs, and of course there are also anecdotal home remedies, if you like.
In the international world, are there population groups or cultures of various backgrounds that have lower levels of dementia than ours? Is it related to population? Is it cultural?
Dr. Joanette: Senator Raine, your question is absolutely relevant and important because we could better understand what is related to what.
There is a tendency, in populations where there will be less vascular disease, to see less the vascular component of the diseases adding to the dementia. It doesn't mean there is no dementia, but it will modulate a little bit.
I was always fascinated for instance by studies in India where my colleague Suvarna Alladi is looking at dementia in populations manipulating or speaking many languages.
For instance, in Hyderabad, India, I was told you have to speak at least five or six languages because there are about 20 or 30 official languages in India. It is in the centre, and many people come from all over. There seems to be a lower prevalence of dementia, probably because their brains have built up more cognitive reserve.
They are linked with what we know, but you could find around the world maybe examples of some of the things we know about risk factors for dementia.
Senator Merchant: You have said that dementia is related to aging. Some persons have developed dementia at a younger age. How young could they be?
Dr. Joanette: Unfortunately in some exceptional cases you can have people developing dementia in their forties, late thirties maybe, but forties and fifties. In some familial cases of dementia, which are very rare again, you will have such observations.
The diseases causing dementia are not caused by aging. I don't want to be perceived as saying that dementia or the diseases causing dementia are the natural follow-up of aging or a part of normal aging. They are diseases whose occurrence appears to require a number of factors, which I mentioned. It seems they interact with some of the biology of aging.
There is a new science called geroscience which looks at this, the relationship between the biology of aging and all the factors that cause this. This is giving great hope to research.
Senator Merchant: There is so much attention paid these days to sports and brain injuries. I wondered if there is any relationship. We talked about diet, but I'm wondering if there is any relationship with the kind of injuries that you get as a young person as a result of sports activities.
Dr. Joanette: Of course some life events can increase the risk of that cascade of events occurring. It is well known that brain concussions in early life can induce a higher risk of developing a disease causing dementia later in life.
The Chair: The background information related to dementia suggests that persons who show signs of it at 60 are called "early onset" dementia. I assume your answer to the question, and you were clear, and we need to recognize this, is that you were speaking about those much younger being exceptional cases, not part of a continuously expanding group of people. According to the literature, it's considered early onset if you're in your early sixties and show the signs. Is that correct?
Dr. Joanette: Mr. Chair, there was a time in the past where there was kind of an understanding that there was dementia which was linked with aging, with senility and then early onset. This was a time where there was this difference. We don't today use this difference too much. I would say that very early onset would be earlier than the sixties, certainly. Let's say from a process point of view there is not that much difference between these, but it expresses some previous views considering dementia in the past.
The Chair: The other thing that has come up during your preliminary and ongoing comments today is that a number of the health issues that you indicated seem to be implied in some way relate to what in other areas are called metabolic syndrome, inflammation and those kinds of issues.
I hate to ask it quite this bluntly, but is there a possibility that sugar is a major element in all of this in terms of looking at it? Perhaps you don't want to answer that right now, but it clearly is implicated in a number of other issues that arise or cause metabolic syndrome.
Dr. Joanette: I would say a systemic metabolic approach is certainly going to be an important factor to understand what's going on, and pinpointing one element versus any other of the very numerous ones is very difficult. This does not mean that sugar might not play a role, but it does not stem as playing a major role at this point.
The Chair: Doesn't jump out as a clear example at this point.
When I first picked up your card I thought this was a test, and if any of us can find our way around this we can say we are not yet at a stage. I think I'm trying to show that I actually made it around the card.
I have a question: Down at the bottom of the list of items at the bottom, in the blue, on the left, you have "brain banking." Is this the research being carried out where brains of Alzheimer's or dementia patients are collected and studied in detail to see if there are any identifiable factors coming out of that?
Dr. Joanette: A lot of research will need brains in order to understand what's going on in the brain.
The Chair: I interpret this correctly. These are brains stored for research.
Dr. Joanette: Yes, but each group in different cities or universities in Canada has their own way of preparing these specimens and so on. One of the advantages here is that you will have a pan-Canadian protocol, and you will have a comparative specimen in order to really do this research. Dr. Sultan Darvesh from Dalhousie is leading that effort.
The Chair: There is no collection of brain tissue at this point that is used in any way in terms of treatment?
Dr. Joanette: No. These are people who have died and have given their brains to science.
The Chair: Thank you. You have been very helpful in getting us started on this, as is usual from your organizations. We thank you very much for appearing before us today, and, with that, I declare the meeting adjourned.
(The committee adjourned.)