Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue No. 3 - Evidence - March 23, 2016
OTTAWA, Wednesday, March 23, 2016
The Standing Senate Committee on Social Affairs, Science and Technology met this day, at 4:15 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. I'm going to invite my colleagues to introduce themselves, starting today on my left.
Senator Eggleton: Art Eggleton, senator from Toronto, Deputy Chair of the committee.
Senator Merchant: Welcome. Pana Merchant, senator from Saskatchewan.
Senator Munson: Hello. Senator Munson from Ontario.
Senator Seidman: Good afternoon. Judith Seidman from Montreal, Quebec.
Senator Nancy Ruth: Nancy Ruth from Toronto, Ontario.
The Chair: Thank you, colleagues.
I will remind us that we are continuing our study on the issue of dementia in our society, and we are delighted to have our witnesses today. I will identify them as I invite them to present. They have, by prior agreement, agreed to make my life very easy by going in the order of the agenda. In that case, I am going to invite, in the first instance, Mimi Lowi-Young, Chief Executive Officer of the Alzheimer Society of Canada.
Mimi Lowi-Young, Chief Executive Officer, Alzheimer Society of Canada: Good afternoon, Mr. Chair and members of the committee. I first want to start off and say I'm grateful that you have picked the topic of dementia as an area of study. I hope that, through my presentation, you will understand why we need to move in the direction that I am proposing for your consideration with regard to dementia.
I'm here to talk about a need for a national dementia strategy and action plan. Canada is desperately behind its international partners in this respect. We are only one of two G7 nations that does not have a strategy in place, yet the numbers tell us it is critical that we act now.
There are more than 747,000 people with dementia, including Alzheimer's disease. If we continue along this path, the number will double to 1.4 million in the next 15 years. Three out of four Canadians are related to or know somebody with dementia. Let me put this in perspective: 78 of your 105 Senate colleagues are directly affected by dementia in their personal lives.
Dementia has far-reaching health, social and economic consequences. Currently, dementia costs the Canadian economy $33 billion per year. By 2040, we can expect that number to jump to $293 billion.
Our workforce is already feeling the strain, and it's going to get worse in the future as baby boomers remain at work beyond retirement age.
Dementia also disproportionately affects women. Women represent 72 per cent of Canadians living with Alzheimer's disease. They also make up 70 per cent of family caregivers, often providing care around the clock and assistance to their family members living with dementia.
The decision to extend the duration of EI compassionate care benefits from 6 weeks to 26 weeks is a welcome initiative. We also welcome the government's commitment to provide more generous and flexible leave for caregivers. But more needs to be done, and the Alzheimer Society of Canada has a plan.
We are proposing the creation of the Canadian Alzheimer's Disease and Dementia Partnership, CADDP for short. It would lead, coordinate and facilitate the development and implementation of an integrated, comprehensive national dementia strategy.
Why is this needed? Right now, there is no mechanism to ensure that best practices and evidence are scaled up so that all communities in Canada will benefit and people get care and support no matter where they are, from coast to coast to coast.
The CADDP would address this by establishing a pan-Canadian approach to ensure that successful programs and supports are shared across jurisdictions. We would accomplish this by bringing together a cross-Canada network of dementia experts, federal, provincial and territorial representatives, researchers, health care providers, key NGOs, industry, people living with the disease, caregivers and their families to ensure that all voices are heard.
The partnership would be built around three major strategic objectives: research, prevention and living well with dementia. It would have a formal structure with an independent, stand-alone model of governance. It would support and respect provincial and territorial jurisdictions over health, all the while adhering to clear targets and measurable outcomes.
To be clear, the partnership would not mandate programs and services. In fact, five provinces in Canada have their own dementia strategies or are in the process of developing them: B.C., Alberta, Ontario, Quebec and Nova Scotia.
However, the partnership would provide crucial support by increasing access to evidence-based information and tools to support provinces and territories as they continue to build individual dementia management strategies tailored to their own needs. We believe this will result in better local management of dementia through tangible and measurable outcomes.
We have seen this model work before with organizations like the Canadian Partnership Against Cancer, which just yesterday received ongoing funding for its work, and the Mental Health Commission of Canada.
We have already found cross-party support on this issue in the House of Commons. Bill C-233, the national strategy for Alzheimer's disease and other dementias act, received first reading on February 25 of this year. It was introduced by Conservative MP Rob Nicholson and seconded by Liberal MP Rob Oliphant.
As Canada now is at a transformational point in its history, for the first time ever this past fall, Statistics Canada told us there are more Canadians over the age 65 than those that are under 14. We know that age is a major risk factor dementia. We know that the number of people living with dementia is increasing day over day and year over year. The unfortunate reality is that right now, at this time, we still don't know the cause of the disease, and we have no cure or disease-modifying therapy.
Canada can no longer afford to lag behind the issue. As legislators and decision makers, we are looking to your support and leadership. I ask that you do everything in your power to support the creation of a national dementia strategy by encouraging the passage of Bill C-233 and reinforcing this by recommending the creation of the CADDP in your eventual report on this study.
Ladies and gentlemen, we have an opportunity to make a real difference in the lives of people with dementia and their families. We owe it to the people of Canada. We look forward to working with you to make this a reality.
The Chair: Thank you very much. I'll now turn to Bonnie Schroeder, who is executive director of the Canadian Coalition for Seniors' Mental Health.
Bonnie Schroeder, Executive Director, Canadian Coalition for Seniors' Mental Health: Thank you, and good afternoon. As the director of the coalition, I'm happy to be discussing a national dementia strategy. This is an incredibly important issue, and I hope it will contribute to a better understanding of the needs of older adults and their caregivers who live with dementia, now and into the future.
I must tell you that I come to this issue with personal experience, as a director of a coalition who receives regular requests about dementia resources from clinicians and family members, and as a granddaughter of a man who lived with vascular dementia for more than 20 years and was cared for by my mother and grandmother. I come from a caregiving family.
Why should we have a national dementia strategy? Today, many people are living with dementia. With our aging population, the number is expected to grow. We also know that as we age, the risk of experiencing dementia increases. Many who are living with dementia and other neurological health conditions want to understand how they can live better with it.
Family caregivers play an important role in supporting persons living with dementia across the continuum of care. Many caregivers are struggling to juggle work, care and their lives. They require support to stay healthy and well — physically, emotionally, socially and financially.
But the truth is, as Mimi said, there are also social and economic costs associated with the disease that have profound implications for the person living with dementia, the caregiver, the health care system and the economy.
For these three reasons, the federal government does have a role to play by establishing an integrated national dementia strategy to address these complex and emerging needs to protect and promote the cognitive health of older Canadians.
We are encouraged by the commitment of federal-provincial-territorial ministers of health to develop a dementia strategy in 2014, as well as the funding for the Canadian Consortium on Neurodegeneration in Aging research, where we sit as a partner. Yet, there are still gaps that the federal government can fill. But how? We have three recommendations.
First, we talk about reorienting the system to focus on early prevention and intervention; second, provide support to caregivers, especially financial; and finally, engage in multi-sectoral collaboration.
Before I go on, I'd like to share a little bit about the coalition and the perspective we take. We are Canada's coalition promoting seniors' mental health by connecting people, ideas and resources through our network of over 2,000 multidisciplinary members. We develop resources for providers, older adults and their caregivers. In particular, we develop resources for older adults who are growing older with a recurring, chronic and/or persistent mental illness; are experiencing mental illness in later life for the first time; are living with dementia with behavioural and psychological symptoms; and are living with chronic conditions that are known to be linked with mental illness, such as dementia, other neurological conditions and cancer. We also develop resources for caregivers of these individuals above.
We have a strong focus on assessment and treatment and a strong focus on promotion of mental health of older adults. We are about reducing stigma as well as ageism when addressing seniors' mental health issues.
Now I return to my first point, the re-orientation of the system on early prevention and intervention. To address the system capacity issue, we recommend a re-orientation of the health system, one from disease management to one of health promotion and prevention of mental disorders, chronic conditions and disabilities, including dementia, with adequate allocation of resources to expand the capacity across the continuum, community support, home care, long- term care and palliative care to meet the growing demand of dementia care.
An example of an early intervention program is the Alzheimer Society's own First Link program. There are many Alzheimer societies across the country that offer this program to connect individuals and families who have been recently diagnosed to support and services at this early stage, as well as support them through the dementia journey.
From a community perspective, the federal government has already invested significantly in the age-friendly initiative. Dementia-friendly communities could be an easy component of this initiative.
Some Canadians are concerned that investing in these types of programs will be too costly for our health and social care system. This scare tactic is simply not true, which brings me to our second point, support for family caregivers. The majority of care is provided by family and friends, and many of them wouldn't have it any other way. Families will continue to provide millions of hours of care per week collectively, free of charge, and they provide this care sometimes at substantial cost to their physical, emotional, social and financial health.
I will focus on financial because I think it's a role the federal government can play. The research is showing that dementia caregivers, on average, incur $4,600 of out-of-pocket expenses per year, over and above the kind of care they provide.
Again, the federal government has done much in this arena: the expansion of the compassionate care benefits, the caregiver tax credit and the employers for caregiver plan, to name a few. While not specific to dementia caregivers, it's a step in the right direction.
So how can the federal government support families? Make the caregiver tax credit refundable, like other provinces, such as Quebec and Manitoba, have done. This would extend support to low-income caregivers. The refundable tax credit would mean that all caregivers, regardless of their income and the level of out-of-pocket expenses they incur, would be able to benefit from this credit.
Our final recommendation is about multi-sectoral collaboration. Dementia is truly a cross-cutting issue that requires multi-sectoral collaboration. We concur with the Alzheimer Society of Canada to establish a national dementia partnership to develop and implement a national strategy.
Consider this: A change in our policies, programs and practices can create a culture shift in our beliefs and attitudes toward older adults living with dementia and other neurological conditions, as well as their caregivers. Instead of being seen as a burden and expense, they can be seen as contributors and assets in our communities.
It's about being proactive and strategic. Why? Because many people who are living with dementia want to live well with it; caregivers are juggling work, care and life, and require support to stay healthy and well; and to reduce the economic costs that will have profound implications for the person living with dementia, the caregiver, the health care system and the economy.
Thank you.
The Chair: Thank you very much. I'll now invite Lynn Posluns to make her presentation.
Lynn Posluns, Founder and President, Women's Brain Health Initiative: Thank you and good afternoon.
Dementia should no longer be misconstrued as an inevitable consequence of aging, nor can it be acceptable any more to pretend that nothing can be done about it. A great deal can and should be done.
To meet the challenge of Alzheimer's disease and other dementias, a concerted effort and long-term economic commitment is needed, with collaboration among researchers and politicians. A national dementia strategy that raises the priority and sufficiency of funding for research; educates the public on risk reduction strategies to delay or diminish the course and cost of the disease; and coordinates holistic patient care will help ensure a comprehensive and consistent dementia program for all Canadians.
Alzheimer's disease and related dementias are shaping our families, our future and our children's futures in a manner that is unprecedented. We can choose to engage and help shape the future or let it happen to us. This is a large, growing and intense unmet need across all key players: patients, caregivers, policy-makers, regulators and healthcare providers. The effect of these mind-robbing diseases continues to widen its influence daily, and many of us find ourselves only one degree of separation away from someone we know or care about being affected by dementia.
No long-term effective solutions exist today. After years of failure, we are on the cusp of having some of the first treatments to alter the underlying pathophysiology of Alzheimer's. While the first generation of treatments won't provide a cure, the ability to slow the progression of the disease can make a significant positive societal impact on slowing the onset of dementia and is an important first step on the road for a cure. However, these drugs won't be able to make their full impact and future generations of therapies won't make it to us fast enough unless our environment shifts dramatically.
Data is irrefutable that women heavily bear the burden of Alzheimer's. Over 70 per cent of all Alzheimer's sufferers are women, and we are more often patients. Some of this is due to longevity, but there are many other scientific reasons, as well. We need to know what these other reasons might be if we are to be able to better prepare for the tsunami that awaits our society.
Women are also more often caregivers, not just for our own blood-relatives but also for those of our partners and our loved ones. Too frequently, women give up hard-fought successful careers in order to provide that care.
The Canadian government has started to address the need for greater dementia research diversity through the sex and gender cross-cutting theme of the Canadian Consortium on Neurodegeneration in Aging and the recent funding support for the Posluns Research Chair in Women's Brain Health and Aging.
We must spark a new conversation that hastens and enables a reimagined experience of dementia. Efforts to help change the thinking must broaden the understanding of Alzheimer's pathology and that it begins decades before symptoms emerge. We need to set the stage for why intervening early is critical. We need to establish the mindset of catching it early. We must shift the paradigm for diagnostic and therapeutic advancements.
We need to move from a cure orientation to a prevention orientation by educating Canada's diverse population on ways to stay brain-healthy longer; that is, lifestyle behaviours that are modifiable to reduce risk through proper nutrition, mental and social stimulation, exercise, stress reduction, smoking cessation, et cetera.
We must broaden society's perspective of the lived experience of Alzheimer's beyond the last few years of its course. That means to develop and fill in the concepts and vernacular that can define the earlier experiences and begin to diminish the stigma — distinguish the disease from the resulting dementia.
The focus of the current paradigm is late and on what is blatantly observable. The mental image for everyone involved and for society at large is a late-stage patient. This absence influences fears and behaviours counter to an earlier orientation, from worry about being seen as less than a complete person to a fear of restricted freedom, such as driving and job loss, even early in the disease.
The understanding of the disease and how it's measured is late. Around the world and even in health care settings, there is limited understanding of the underlying pathophysiology of Alzheimer's and that it likely begins decades prior to symptoms. The disease is currently assessed by symptoms and their progression, and often not until a family member demands it. By the time even subtle symptoms are visible, it's late in the pathophysiological process and most consumers and providers don't realize it. The initial signs of cognitive impairment are subtle and easily interpreted by patients and families as normal aging.
Seeking consultation from a provider happens late; patients and families often don't talk to a doctor until cognitive and functional issues significantly impact daily life. Diagnosis happens late; 50 per cent of Alzheimer's diagnoses don't happen until the moderate stage of dementia. By then, the patient can no longer benefit from these potential new therapies.
Diagnosing in the mild stage is difficult. Even in clinical trials, a clinical assessment alone is wrong about 25 per cent of the time.
Communication of the diagnosis happens late, if at all. Upon making a diagnosis, many providers will delay and/or avoid altogether using the word Alzheimer's and communicating the diagnosis to patients and families. Many physicians believe communicating, especially in the early stages of the disease, can do more harm than good.
The risk of Alzheimer's increases with age. That means that as Canadians live longer, the proportion of the population with Alzheimer's grows as well. In Canada today, the combined direct and indirect costs of dementia are, as Mimi said, $33 billion a year. If nothing changes, this number will escalate to $293 billion by 2040.
According to the CIHR, annual funding for cancer is close to $150 million; heart and stroke, $96.2 million; HIV/ AIDS, $49.2 million; but Alzheimer's and related dementias are only $41.1 million. Alzheimer's and related dementias, therefore, only account for 12 per cent of CIHR total funding against these disease states.
Mortality rates, however, have declined from cancer, heart and stroke and from HIV/AIDS, but death from Alzheimer's has risen dramatically. According to a recent study, Alzheimer's was the third-leading cause of death in Canada, behind heart disease and lung cancer. The expected surge in dementia cases will overwhelm Canada's healthcare system unless specific and targeted action is taken.
We still need to increase public funding for research, with focused efforts for sex-based research; increase societal understanding of the time course of the disease, with a focus on brain health through education programs with individuals, families and family physicians; provide access to an accurate and timely diagnosis to create a sense of urgency to catch the disease early; and provide physical and financial support for caregivers. A national dementia plan should address each of these four objectives.
In working with the provinces and organizations like the Alzheimer Society of Canada, the Coalition for Seniors' Mental Health and Women's Brain Health Initiative, collectively, we can significantly improve the brain health of Canadians and lessen the financial risk and drain on Canada by being proactive with less of a need to be reactive to a disease we know is escalating. The future of brain health will expand exponentially if we break out of research and political silos and truly collaborate. This is the fastest way to find real solutions that can change lives for all people today.
Thank you.
The Chair: Thank you all very much. I'm going to now open the floor to questions from my colleagues.
Senator Eggleton: Thank you for your presentations. I'll start with Ms. Lowi-Young. Your organization, the Alzheimer Society of Canada, has been calling for a national dementia strategy for a number of years now. Then, in 2013, you added in this concept of a Canadian Alzheimer's disease and dementia partnership. Now, you're saying also that you support Bill C-233, which is a private member's bill before the house. It calls for something a little bit different; it calls for an advisory board to be established. Added into this mix of where we're going and where we have been going is the decision by the previous government's Minister of Health to establish a national dementia research and prevention plan. How do you see all of these dovetailing to accomplish what you think needs to be accomplished?
Ms. Lowi-Young: The Alzheimer Society of Canada still feels that the Canadian Alzheimer's Disease and Dementia Partnership is the vehicle by which we actually create a national dementia strategy and action plan. Yes, when we had the discussions about Bill C-233, to start off with, we could create an advisory board. Ultimately, I see the need to develop an entity that can oversee the creation and implementation of the plan.
We recommended the CADDP because we looked at what the Canadian Partnership Against Cancer was able to achieve in respect of cancer care. That entity actually served as a facilitator, coordinator and integrator of all the bits and pieces of cancer care with clear objectives and measurable outcomes. We believe that the only way we can succeed is to bring an entity together with the right stakeholders that I mentioned — people with the disease, researchers and the provinces — so that we can create not only the plan but also measurable outcomes and targets against which we can measure ourselves to see what we can achieve.
The previous government talked about a national dementia research and prevention strategy. For the Alzheimer Society of Canada, that was a small starting point of the Canadian Consortium on Neurodegeneration in Aging. Some work was done on the prevention side, but there wasn't a concerted effort through a national dementia strategy. There were various bits and pieces of what we would see as a national dementia strategy but not in the fulsome way that we are proposing today.
Those are the bits and pieces and how they all work together from our perspective.
Senator Eggleton: Have you discussed your partnership concept with the federal government, either the current one or the past one, and with any provincial governments? If so, what kind of reception have you received?
Ms. Lowi-Young: With the previous government, we had a conversation on a number of occasions on some of the issues related to the position taken by the previous government around health care and approach to health. In our discussions today, we are proposing that this is a non-partisan issue. As you know, there was a previous private members bill by Claude Gravelle that nearly came to fruition in the previous Parliament.
There are many important things that can come together. Generally, we have seen from MPs and through a number of our discussions with senior bureaucrats a support for what we are proposing. We have involved our provincial societies in reaching out to the provinces and saying, "How do we dovetail what will happen in the provinces around provincial strategies, and how can they connect to a national strategy?" Some of the things we are talking about should happen nationwide rather than in the individual provinces because the individual provinces are focusing on care delivery and we are looking at a much broader, research perspective.
Senator Eggleton: What kind of organizations would you pull into this partnership?
Ms. Lowi-Young: When talking about industry and technology, it would include officials from the provincial ministries, the pharmaceutical companies. When talking about research, we have the Canadian Consortium on Neurodegeneration in Aging, which has 370 researchers; so bring representatives from that group. People with dementia and their families should be represented. Also, other industries may be interested in the area of dementia, and NGOs, which would include the Alzheimer Society of Canada and other organizations such as my colleagues here. They should be represented around the table.
Senator Eggleton: Ms. Posluns, I'll ask you about what you said in your remarks. First, you said that over 70 per cent of Alzheimer's sufferers are women. You said that one of the reasons could be longevity as women are outliving men. You quite correctly point out that they are also caregivers. That figure of 70 per cent surprised me. What other reasons are there? Are women more likely to get diagnosed earlier than men? What are the reasons, do you think?
Ms. Posluns: Part of the problem is that scientists don't know exactly why women are more susceptible to diseases like Alzheimer's, apart from aging; but that doesn't explain all of it. Part of it may be hormonal. For instance, they know that if you have a hysterectomy and ovariectomy before natural menopause, it can increase the onset of dementia 140 per cent, which is huge.
A recent study was done in the U.S. where they talked about women retaining their verbal memory longer than men. One of the tests for Alzheimer's, for instance, is giving you a list of words and then 10 minutes later you have to repeat those words back. If women retain their verbal memory longer than men, by the time they forget that list of words, they are further down the slope toward Alzheimer's than men are when they lose their memory, so they may be catching it later in women, which may be worse for them because not only do more women than men have Alzheimer's, but also they drop off faster. Their rate of decline is faster than that of men.
By looking at it by sex and gender for the first time, the research is starting to understand what these differences are, but the bottom line is that they don't know yet, which is why looking at it through the sex and gender lens is very important.
Senator Eggleton: You also noted the diagnosis being late. Most people don't realize they have it, and consultations happen late. All these things you mentioned are happening late.
We also know that healthy and normal aging can be associated with some memory loss. We all experience some of that. How do people determine where they might be slipping over the line into something that is more serious? I asked our first panel this question, and I understand it's tricky. How do people know if they have slipped over the line?
Ms. Lowi-Young: In normal aging and forgetfulness, the issue is if you forget and remember an hour later, that's okay. But you might forget and not remember an hour later. There is a fine line between memory loss and forgetting things. I think that is where you slip over the line.
It's important to understand that the actual disease, the beginnings of the disease, whatever we know of it, can start 25 years before the first symptoms appear. There is degeneration occurring well before the first symptoms appear. That is the challenge around early diagnosis and how early should diagnosis be made, because then we have the whole ethical issue. It raises some important ethical issues.
Ms. Posluns: To build on what Mimi is saying, when you are in your 30s and 40s, although the disease can start at that young age, you are asymptomatic. You wouldn't get tested because there is no sign of anything happening. Part of the challenge is to start educating people in their 30s and 40s, who think they won't worry about it until they are in their 70s and 80s, and try to do these modified lifestyle interventions early. Starting that earlier is important. As you know, changing behavior is a long process.
The Chair: Because this issue will come up over and over as we try to pursue this, I would like to follow up briefly on that question and the answer that you gave. If the disease can start some 25 years prior to it being detected in an individual, how does one know retrospectively that it began in that individual 25 years earlier?
Ms. Lowi-Young: I'm not a scientist or a physician, but I know there has been research and work done in this area, and they now better understand, because they have done some testing. They do know because they have followed people prospectively and have done some assessment.
I think what is very interesting is: What can this lead to? Again, the mechanism of the disease is so poorly understood. Just knowing that there are brain changes and if you actually follow an individual over a period of time, we can better understand the disease.
I think there has been some modelling through mouse models in terms of the work that the scientists have done to actually begin to understand a little bit better the mechanisms and knowing that it does start. The brain is a very complex organ.
Ms. Posluns: The researchers are trying to look at different biomarkers now, but again, it is in mouse models. It is very early on to try and find, rather than in autopsy, that in fact someone has the disease.
The Chair: We clearly understand how you can look at the individual once they have been diagnosed. I will ask this question of others who will appear before us, but because you mentioned it in such definitive terms, I thought you might have an insight on it.
Senator Seidman: Thank you to all thee of you for your presentations.
Interestingly, the Department of Health in the U.K. released a report entitled Prime Minister's challenge on dementia 2020: Implementation Plan just this month, March 2016. It set out more than 50 specific commitments that aim to improve dementia care, research and awareness by 2020. If you look at the themes addressed in this plan, they include risk reduction; health and care; dementia awareness and social action, including dementia-friendly communities; and research.
My question to all three of you is: Are you familiar with this particular report? Are there things in this report that the U.K. has put out — because we don't need to reinvent the wheel, as we are so fond of saying — that you think we should pay special attention to?
Ms. Lowi-Young: I haven't read the report in detail, but I do know that the U.K. is well advanced in the area of Alzheimer's and other dementias in terms of programs and services; strategies around dementia-friendly communities; around dementia friends, the whole stigma piece; and risk reduction.
David Cameron has been an incredible champion of dementia. He called the G8 together in December 2013 to sign a declaration on what needs to be done in dementia. He has taken it very seriously, and they have invested millions of dollars in research in the U.K., like a number of other countries that have well-established dementia strategies.
Although I haven't read it, I am quite familiar with some of the key strategies identified there and know that they are leaders in dementia strategies.
Senator Seidman: I don't know if Ms. Schroeder or Ms. Posluns might have something to add. If not, then I will continue.
Ms. Schroeder: I know I saw that as part of preparing, but I didn't read the whole thing. I do think the concept of what Lynn said around making sure it is around prevention lifestyle is important, that people do take care of themselves, but there is that role of the community, hence the focus on the community and moving towards that concept of a community. We will have many people living with cognitive health. We have many people with disabilities and cognitive disabilities in our communities. What does that look like? There needs to be a community response that parallels a personal lifestyle perspective.
I do think from the report, as I looked through the table of contents and scanned it, that there is a strong community perspective here. We need to reduce stigma and make communities welcoming, and how do we address people's cognitive health in ways that are supportive and not punitive and restrictive?
Ms. Posluns: I actually presented in the U.K. Although they are advanced in some ways, I'll have you know there were two things that we were ahead of them on.
First, the research chair that I talked about earlier, the first research chair in women's brain health and aging, they really saw that as a bonus and were anxious to know more about it.
Second, in terms of the education initiatives, I had given them a sample of one of our Mind Over Matter magazines, which is an education piece we distributed 100,000 copies of through The Globe and Mail, and Health U.K. wants it in the U.K. because they don't have something like that there. So in some ways, we are ahead of them.
Senator Seidman: It is wonderful to know that we are sharing. That is what it is all about, isn't it?
Ms. Posluns: Exactly.
Ms. Lowi-Young: As well, Senator Seidman, I think you are having Mr. Marc Wortmann present to this group. He can elaborate on what seems to make up a good national dementia strategy, but I can comment that the common theme around strong national dementia strategies is a focus on early diagnosis, on access to care and support and stigma reduction. Many of the national dementia strategies have that as their underpinning, as well as the prevention piece, which is what we are promoting as a critical part of a national dementia strategy.
Senator Seidman: It is interesting that you answered my next question, which was going to be exactly that: What is the essence of a good national dementia strategy?
I appreciate hearing what you think the essence is, and I also understand in this report the focus on communities. All three of you used the word "partnerships," for example. If you look at the U.K. program, they have lead organizations and partners everywhere in this program. That is the collaboration that all three of you spoke of and the multi-sectoral investment.
Under "dementia-friendly communities," one of the items that is particularly important talks about delivering integrated health and social care in order to develop further support through this. Do you have a particular response to that aspect of dementia-friendly communities that would be delivering integrated health and social care?
Ms. Lowi-Young: If I may answer first, Senator Seidman, I think we are talking about maybe two different things. I see dementia-friendly communities as creating an environment where someone with dementia can live well and be respected and supported in their community by educating fire, police, the community and shopkeepers in terms of how to train their staff when they interact with somebody with dementia.
The Alzheimer's Society of the U.K. has developed standards. Each city and town can apply to become dementia- friendly. They say that dementia-friendly communities are a journey, not a destination, and you have to continually try to improve how you train your staff and others in shops and public service in terms of people knowing how to interact with somebody with dementia. That is one thing.
Integrated care in terms of social and community care is absolutely essential. In most provinces other than Quebec, we have the distinction between social care and health care. Those definitely need to be integrated. Through the various mechanisms, each province has a somewhat different system in terms of a health system, and there definitely needs to be a focus on how we bring those two together.
In the U.K., it works better together because they have a much more integrated policy arena around home and social care. That is something that we need to look at in terms of bringing those two together.
Senator Merchant: Thank you very much for your presentations.
All three of you talked about the stigma. For instance, with cancer, for a long time, families did not want to talk about someone in their family having cancer, because they were afraid that there would be a reaction in the community against their people. You talk about getting rid of the stigma, but exactly how do you envision that we go about that? I know you mentioned educating the community, the doctors and the family, but how can we get people not to be afraid? Even if you understand yourself that you might have this, you might be afraid to come forward.
Ms. Lowi-Young: I think people are fearful of the diagnosis because they feel that once they get the diagnosis, their life is over. But it's not, because you can actually live well for a number of years with the disease. It takes a lot of public education, first of all, to understand the signs and symptoms of the disease and what you can do to help reduce the progress of the disease — for example, as we've talked about here, physical activity and social interaction.
I think we have to educate people about what the disease is. It's really amazing. We've done national polls and focus groups on stigma and Alzheimer's disease and dementia, and it is quite amazing that even people living with family members who have the disease don't want to talk about it.
I think what we have to try to do collectively and through a national dementia strategy is to reduce the fear of the disease. It is a horrible disease. We know that. It's a progressive disease. We can't deny that. But it doesn't mean that once somebody is diagnosed, they can no longer live well. It's up to organizations such as ours, as well as making an effort to try to reduce the fear and the stigma, first by understanding it, and secondly, by promoting what people can do to live well as long as possible.
Ms. Schroeder: Adding to what Mimi has said, the seniors' mental health coalition has done quite a bit of work on the stigma around mental illness, depression, anxiety and suicide. Working with the Mental Health Commission, it is the concept of social contact. When you are educating people around reducing stigma, we have our own kind of values and say we want to be a welcoming community, but then we have other ways that we discriminate and say it's other. Lynn had commented about the stigma and that we have that preconceived notion that it's late dementia that we're fearful of.
I do know, for example, that through the Mental Health Commission of Canada, the Mental Health First Aid program is being currently adapted for seniors, and it's being piloted later this spring. As part of the basic training for Mental Health First Aid, two modules were added. One was on dementia and the other was on delirium, which is another cognitive health issue that's important to the coalition.
We have recommended building into that kind of training bringing people with lived experience as part of that education and training. Again, it's knowing how people respond and react to someone who may have dementia. They're in the community and may be lost or, for example, paying their furnace bill or repair bill too many times, and the company not knowing how to stop that. Through the first aid training, they can understand ways they can intervene and support that person. Those are two examples of some model programs around reducing stigma from our experience.
It's not just about mass media campaigns, although I think the StillHere campaign is important around the early stage: Yes, I have dementia. I'm still here. You don't need to talk over me. I can answer these questions. But it's important to have that social contact, that is, that genuine, authentic understanding of the experience of dementia, which I think both of you have talked about as well.
Ms. Posluns: Some dementias can be overcome, like vascular dementia. It's important that we do reduce the stigma so that people can get tested to see if there is something they can do to reverse the problem. There are other things like urinary tract infection, which can present with dementia-like symptoms. It's important that people get tested. That's through the education process.
The other thing I've read a lot about is this virtual dementia tour, which is like a sensory deprivation. A lot of cities in the U.S. and the U.K. are using that as a method to train first-line responders, for instance, to try to have more empathy towards those with dementia they might approach, which also can help reduce the stigma because it can help reduce the fear.
Ms. Lowi-Young: We have a program in Canada called Dementia Friends Canada, which has been a major effort to try to get people to understand what it is when you see a person with dementia, what you can do, what to notice and be sensitive to it. I think it's a way of trying to reduce that overall sense of, "Oh, my goodness, that person has dementia. What do I do with them?" It's being able to give people simple tools to actually interact with somebody with dementia and feel more comfortable and include them in their social company and their efforts. I think that's something that we have tried to do in Canada and need to do a lot more about that.
Senator Merchant: Just carrying on with that, sometimes it is our body language and the way we express ourselves. For instance, we're talking about the tsunami. This can frighten people. I know you're doing it because it is a very serious thing that we have to deal with. Sometimes if you say to young people, "Drive carefully. Don't drink and drive because you'll have an accident and you'll be paralyzed," they say, "Oh, no, I would kill myself if that were to happen to me." But we know very well that people live with that kind of condition.
With older people, because they're more mature and have lived a little longer, when they find out that they might have the condition, how do they respond? Is it something that they say that they accept and say, "I'll live with it, but I want to live with it the best way I can," and they start planning? What is the reaction of people when you first tell them?
Ms. Lowi-Young: What we have tried to do through the Alzheimer Society and our provincial society is the First Link program. It is how to link people to the resources and get people support and assistance, once the diagnosis is made, but also how to help the family and the individual to cope and to deal with the diagnosis and be able to help them plan.
The other thing is we are now also educating insurance companies, lawyers and so on about the disease and how they interact with people and to support them also in helping them to prepare. Because once you have the diagnosis, it gives you the opportunity, while you still can, to plan for your future from a care point of view and a legal point of view and all that. That's the support that we as the Alzheimer Society across the country have tried to give to support people once they're diagnosed.
Senator Munson: Thank you for your presentations.
Is it the United Kingdom we should be looking at as the model of the G7 countries? Canada seems to be way down on this scale. We need more information. We need to know what these countries are doing. Is it the U.K. that we should be looking at and having witnesses through teleconferencing or whatever we may do? Or are there good things happening in other countries, too?
Ms. Lowi-Young: From my perspective, I think the U.K. does have some very interesting strategies, as we've heard from Senator Seidman. I think there are other examples through Australia. Australia has, again, some excellent components of a national dementia strategy.
In terms of my colleague Marc Wortmann and the work of Alzheimer's Disease International, they have done a comparison across the world of different dementia strategies and some of the key components that make a dementia strategy strong.
Senator Munson: There's one term that I really hate: "provincial jurisdiction." Don't you like that word? I was a reporter here in 1974, and I heard "provincial jurisdictions." There are barriers built across this country on everything.
We in this committee eight years ago listened to the autism groups, and they're speaking the same language of early diagnosis and different issues. We put out a report saying there should be a national autism spectrum disorder strategy. Things had happened in the previous government, which have been very good, for a pan-Canadian partnership — a bit of money, debt tax credits, disability tax credits and so forth — for which I laud the late Jim Flaherty — and Ready, Willing & Able, and all these things.
At the essence of it all, we're all Canadians. I used to say that autism has no borders. Dementia has no borders. When I hear your language of "we need to set the stage for why intervening early is critical," it jumped out, as it did for Senator Eggleton, that we need to establish the mindset of catching it early. To me, that can only be done with federal or national leadership.
Sometimes governments like these national strategies, like the Mental Health Commission and all these things, but when it comes to other areas, there seems to be a reluctance to sit down. They say, "That's tradition; that's the way it's been done." How, in the name of heaven, do you think you will get there for a national dementia strategy?
Ms. Lowi-Young: Having been a health executive for over 40 years in this country, I couldn't agree more that we have to stop talking about the boundaries, because there is no boundary, as you said. There should be no boundary. If there's a way for the federal government to take leadership in setting national standards and to find a way to incentivize the provinces through transfer payments or whatever to implement national standards, I think that would be outstanding, especially in the area of dementia.
We have 13 healthcare systems in Canada, with different ways of delivering community care, social care — whatever. When it comes to dementia, just like there shouldn't be any partisanship around dementia, there should be no boundaries, either. I couldn't agree more with you.
Ms. Posluns: I concur with had Mimi is saying, but to go back to the previous issue of using the U.K. as a model, I think they are ahead of us, definitely. Just so you know, Canada is ahead of other countries in the area of focus on women. I want to stress that, because when I was in Lausanne and presented in Switzerland, Switzerland now wants to model what we're doing here. Countries can share with each other. It's not just across the provinces. We can learn from them and they can learn from us, globally, on this issue, because everyone needs to work on this together.
Senator Munson: This next question is more specific about what the federal government may or may not be able to do for dementia patients in seniors residences and long-term facilities. Is there a federal role there? Have you envisaged anything along that line? Also, there are housing issues, particularly in rural and remote parts of Canada.
There's such a similarity in a unique way with autism. We seem to have all kinds of things we can get access to within the cities, but when you're alone on a country road, the only thing you have to protect yourself from an autistic son or daughter is that you can outrun your son or daughter.
If you're in a remote, rural area and your husband or wife has signs of dementia, and things are happening, is there any specific role you see a federal government could play in either seniors' residences or in these remote and rural areas?
Ms. Lowi-Young: What we talk about with the national dementia strategy are best practices and scaling up, so that they can be provided no matter where somebody is.
The unique issues around remote and rural access to services have to be dealt with, no question about it. There are many mechanisms using technology and telemedicine. It's just the willingness of government to expend the necessary dollars to implement. There are best practices in certain parts of the country that can be used to scale up and serve as a model. I see that's where the federal government could promote that in terms of setting some national standards.
The other thing is long-term care and seniors' residences are big challenges when it comes to people with dementia. We know that some of the large organizations that deliver long-term care and seniors' housing come to us and say, "How can you help us to better deliver the kind of care we need in long-term care homes and seniors' residences?" We provide programming, but how do we then also allow what we have determined to be best practices to be spread, not only from one company to another but in all long-term care homes?
Ms. Posluns: Isolation is a problem, particularly in smaller areas. People become isolated, and that's another thing that can hasten the onset and the progression of the disease. There might be things that the federal government can do to encourage local community centres and religious centres to put on programs that try to bring people together in a more social environment. That's a really important component of dealing with somebody who has one of these diseases.
Senator Nancy Ruth: Ms. Posluns, I want to know why you founded the Women's Brain Health Initiative. What was missing in the general conversation? Why did you do it, and have you been able to achieve what you wanted to? Has it been picked up by other groups?
Ms. Posluns: Thanks for asking. I'm fortunate; no one in my immediate family has dementia. But as a woman, when I found the statistics for women, that women were more susceptible to brain-aging diseases but the research today still focuses on men, I said, "That doesn't sit well with me, particularly with three boys." I figured they wouldn't look after me as I age. They would just put me away and figure I wouldn't know about it, and that was scary.
I was doing fundraising at Baycrest; I was on the board of their foundation. That's when I got exposed to some of the statistics through the Rotman Research Institute, and I decided I wanted to do something about it. I gave up my career to found the Women's Brain Health Initiative to really focus more resources for women in the area of research, as well as to educate the general public about what they can do to protect themselves as they get older.
The more I talked to people about it, the more support I ended up getting. In fact, the research chair that was recently announced — not only did our family put up some of the funds for the research chair, but the funding was matched by the combination of the Canadian Institutes of Health Research and the Ontario Brain Institute. Through the Alzheimer Society of Canada, Mimi generously put up money for two post-doctoral fellows. That is huge support from both a family as well as government agencies to help move the needle in terms of the research by having somebody that specializes in women's aging-brain health.
Like I said, by presenting in places like Switzerland — and now they want to emulate the same thing there — I think we are making progress in terms of doing more for women in this space. I'm excited about it. Thank you for asking.
Senator Nancy Ruth: You said there needed to be sex-based research. That leads me to believe that it's still a big issue that it isn't.
Ms. Posluns: Correct. The CCNA, the Canadian Consortium on Neurodegeneration in Aging, was primarily funded by the Canadian government, but Women's Brain Health Initiative put up a small amount of money and, because we did that, we got on the agenda. As a result, the research that's going to happen through the 340 researchers who are looking at neurodegenerative disease over the next five years — there's now a cross-cutting theme. All that research will be looking at sex and gender for the first time, which is fantastic, so we can now start reporting to people about these sex differences. I was talking about the verbal one. That was a big piece of learning that happened to be done in the States.
Senator Nancy Ruth: In your mind, is there any relationship to stigma, generally in mental health, too, that is women-specific, and is it related to other issues of stigma for women in Canadian society?
Ms. Posluns: You might be able to talk about that better than me.
Senator Nancy Ruth: Can you answer first? I want your gendered view on this. I don't know the answer.
Ms. Posluns: It's an excellent question. I would say that women very often, because they become the caregivers of their families, put themselves last. They don't even allow themselves the luxury of looking after their own health. I think that's part of the problem.
Whether that leads to late diagnosis and whether there's stigma attached to women differently than men, that very well could be, but there is a difference between sex and gender also. It may be more a gender issue than a sex issue. One is biological; one is social. That area needs to be explored further.
Ms. Schroeder: From the coalition's perspective, much of what we have seen is research that is done on men. We also recognize that the Chief Public Health Officer of Canada put out his report on sex and gender and looked at men being underdiagnosed and undertreated for mental health. So again, trying to draw in, what is that lens?
Another lens that we've been exploring is around culture and diversity. We've looked at other cultures and how people from the Chinese community and other Asian communities deal with mental health, dementia being one aspect. We need to look at some of those intersections of the social aspects of dementia, socio-economic, gender and culture being three that are really quite important. What makes women more susceptible?
Senator Nancy Ruth: My last question has to do with race. Are there any scientific differences between various races in terms of mental health or dementia?
Ms. Posluns: Yes. Some research is being done in that area. I know that in the Asian community, it's less prevalent, but in the African-American community, it's higher. They are just starting now to look at that. It may be lifestyle- related as opposed to anything else, including things like nutrition, exercise and education. All of those things play a role in terms of your brain and mental health.
Ms. Lowi-Young: We know that education plays a role in terms of the prevalence of the disease, as does diversity, but we're only now beginning to understand.
Senator Nancy Ruth: "Diversity" means "race" when you use the word, does it?
Ms. Lowi-Young: I mean diversity of all sorts.
Senator Nancy Ruth: All factors.
Ms. Lowi-Young: All factors, absolutely.
To your earlier question, Senator Nancy Ruth, I'd like to draw attention to an excellent report that has just been released by the Milken Institute in the U.S., called The Price Women Pay for Dementia: Strategies to Ease Gender Disparity and Economic costs. It's an excellent report that highlights the issues that we're talking about here and that Lynn has talked about extensively. It explains many of the issues that women face, both the person who has the disease as well as the caregiver.
Senator Raine: We've discussed many things. Off course, I guess for all of us, the big concern is that there's no cure. It's not an easy disease or circumstance to deal with. I'm sure there are a lot of things we could do better as a society.
Have there been any population health studies done on dementia? Would it not be a good idea to start doing some — tracking some people very early on from childhood and track the correlation between their general health, socializing and education and all of these things, to see if we can't start to understand? We might be looking at this for 20, 30, 40 or 50 years, and we haven't got a study going. There are brain scans available, I believe, that could be used in a study like that. Is it time maybe to start thinking about something, or is there something being done?
Ms. Lowi-Young: There is something being done. The Canadian Longitudinal Study on Aging has a cohort of many thousands of people. It will be beneficial once they start to produce data to support the research and the Canadian Consortium on Neurodegeneration in Aging. It will also provide valuable and important information to better understand the longitudinal nature of the disease.
Senator Raine: Is that a big study? When was it started and what age does it start at?
Ms. Schroeder: They started collecting data. There are several sites across the country collecting interview data with over 50,000 at each centre. It's a massive undertaking by Canadian researchers. You're looking at middle age and wanting to track them over a long period of time. Canada actually didn't have a longitudinal study of middle-aged and older adults. The first data set has been released, but it will not necessarily get at some of those cognitive changes because it's the first set. As we move ahead and look longer term, say 10 to 20 years down the road, we'll have some of that.
A neurological health conditions study was done by the Public Health Agency of Canada's Chronic Disease Prevention Branch. The report was released, and we use it and quote from it, but I don't know where it's going with that. There's an important surveillance, I think. Multiple studies were produced and reports released around the prevalence, size and scale of all neurological health conditions, including Parkinson's, Huntington's, stroke, et cetera. There's a lot in there, one being dementia. That cognitive health perspective is there as well.
Senator Raine: If it starts at middle age and you're saying that dementia or Alzheimer's probably starts 25 years before the first symptom, how will we know how to better discover the symptoms — the early warning signals, if you like?
Ms. Lowi-Young: We talked about the biomarkers and so on in terms of how to actually pick up some of the key triggers whereby one would assume that something is actually going on, but that's better addressed by the scientists and researchers than by us.
Ms. Posluns: The World Dementia Council came out of the G8 in 2013. The studies happening globally are starting to get shared, which is great, so that Canada doesn't have to rely only on its own longitudinal studies alone to try to find the answers. That is good news for everybody, because we'll have access to that information sooner, but it is a long time in coming.
They now know that you don't necessarily have to have the gene to succumb to Alzheimer's. You may not have the gene but still get Alzheimer's, and you can have the gene and not get Alzheimer's. It's scary. This education piece is really important. They only know that this can reduce your risk. It's not a cure if you do have Alzheimer's, but it can reduce your risk or delay the onset. That's why the education piece is critical, and the earlier you start the better.
I recall Dr. Sandra Black from Sunnybrook Hospital talking about a study done. She said that the decade where exercise has the biggest improvement on your brain health, through looking at imaging, is in your 20s. If you're in your 20s and exercising, that has the longest benefit for you when you're in your 70s. Who thinks about it in their 20s? That's why the education part is important.
Senator Raine: Do you think we should put quality physical education back in the schools?
Ms. Posluns: I do.
Senator Raine: It's a problem. We just finished a study, as you know, on the scary rising rates of obesity, and it's all linked.
Could you fill me in on what's available and what the situation is with regard to certification and training courses for dementia caregivers?
Ms. Lowi-Young: The provincial Alzheimer's Societies across the country have a program for personal support workers to train them in dementia care and also in palliative care in dementia care. Various different certification programs are provided. We need a lot more because there are only so many resources for so many people that we can actually deliver. We have waiting lists for people to get through the program because long-term care homes and community services know they need to train more staff. In long-term care facilities now, close to 70 per cent of residents have dementia. In community care, the numbers are high as well. That area needs resources and support, but there is effort through the Alzheimer's Societies across the country to support that.
Senator Raine: Is this training given at community colleges or by the Alzheimer Society?
Ms. Lowi-Young: The program I am referring to is actually being given by the Alzheimer Society as an adjunct to the certificate programs they are using in the colleges.
Ms. Schroeder: Being involved in other knowledge-exchange activity, out of the neurodegenerative study on aging, there is an arm that is looking at getting the research into the hands of providers. It's not certification by any stretch, but there is a hunger.
Our organization offers education on a wide range of topics related to mental health, and we have 200 people showing up to a one-hour webinar to get information about different conditions. There is a lot of information happening on the ground around that support and knowing some of the networks that are being created, such as, in Ontario, the behavioural support unit, so having people with specialized skills providing consultation regarding long- term care, whether they be in-house or outside coming in.
In Ottawa, we have, as far as I understand, the only hospital in Canada with the behavioural support unit within the hospital — a consulting team to be able to help the hospital when they have a patient come in with dementia. They may not be in hospital because of the dementia. They may have a cancer or have fallen and broken their hip, but they are being able to support in that consultative role. Nurses, physiotherapists, occupational psychiatrists and geriatric psychiatrists are playing that role in a collaborative team approach.
No, our current healthcare workforce is not prepared to provide dementia care, and I don't think the curriculum in the majority of those professional groups, as a social worker, is there. But I do think we are trying to support people who are currently providing the care — personal support workers in home care, the behavioural support teams in long- term care and this model program in an acute-care hospital — to really try to build that capacity, and a whole lot more.
I understand you have other medical professional groups coming. Those are questions you need to ask them, as well.
Ms. Lowi-Young: In response to that, apropos your question, that speaks to why we need a national dementia strategy. There are a lot of good things happening all across the country, but we need one source of best practices so that people can be trained appropriately to deliver the kind of care that people need when they are dealing with people with dementia, be it in the community or in hospital. There is a lot of great work being done across the country, but there is nowhere to bring it together.
We live in a world of "pilotville;" everyone is piloting a little thing here or there. Then we find a success, but we don't spread it or share it. That is exactly to your question.
Ms. Schroeder: May I jump in?
The Chair: Yes. We are spending a lot of time on this, but if you can make a specific point?
Ms. Schroeder: It is something different. We talked about providers, and it is the education and support of family caregivers. We sometimes forget that. We need to be able to support and provide education to family caregivers as well, because they are continuing to provide the majority of the care, and they don't bump up against the healthcare system until it's sometimes too late. They are dealing with a lot of crises, and they are being denied service because some of the behaviours haven't been dealt with earlier on. So that early intervention and prevention is important. Don't forget the family caregiver in that education.
Senator Patterson: I have one question for Ms. Lowi-Young. To implement a national dementia strategy for Canada, the Alzheimer Society has proposed, in a thoughtful document with strategic objectives, the creation of the Canadian Alzheimer's disease and dementia partnership. I would mention that I noted with approval that it addresses the needs of First Nations, Inuit and Metis, which are significant.
Could you describe what federal investments would be required to realize that partnership?
Ms. Lowi-Young: In order to implement this strategy that we are proposing, we are asking for $30 million a year over five years, for a total of $150 million. We say $30 million. When you think about it, that is just under $1 per Canadian per year. We are now spending $1,000 per Canadian per year for care and support. We think it is a meaningful investment for an important outcome.
Senator Patterson: Have you broken that $30 million down in more detail that you could give us, either now or later?
Ms. Lowi-Young: Later. I can break it down. We parsed it out based on the various strategies that we've identified.
The Chair: Would you forward that through the clerk, please?
Ms. Lowi-Young: I will.
The Chair: Before I move to the second round, I would like to make an observation and then ask a question with regard to an observation.
I want to point out that CIHR is conducting a strategic program with regard to the research base of dementia. We have deliberately stayed away from going into that in great detail. We are looking more at the sociological issues that you have been describing with us today. That partially explains the difference in our two approaches.
In that regard, though, I know in the reading that I have been doing there is a great deal that has been done over the last number of years with regard to observational issues of taking groups in society and following them with regard to development. Things like exercise appear to be, yet again, a very important factor in all of this, if it is sustained over a period of time — not just at the early stages but over the course of life. Then there are other things related to inflammation and so on, which appear to be very significant in terms of stimulating the development of Alzheimer's and other aspects of dementia. That then relates to viral load over the course of a lifetime and so on.
Those will be fascinating studies when those are done, but they lead me to the observational question I wanted to put you. If we look at other major disease symptoms that society deals with, whether cancer, Parkinson's or type 2 diabetes — the latter two are issues that develop often later in life. Parkinson's can occur at almost any stage but more significantly at a later stage. Type 2 diabetes generally increases in probability with age and other factors.
Dementia has been around as long, or longer, than those specific aspects; yet, we are really just now seizing ourselves of this issue in the same seriousness that we have been looking at the other diseases for a long time. The Alzheimer Society of Canada has been spearheading that for a long time. I don't want to imply for a moment that you are new on the ground on this.
However, regarding the impact on society recognizing the significance of investing in the basic research to get at the underlying issue here, do you think it is because this seemed to be so strongly associated with age over time that it was simply considered "one of those things" — that it is just the aging phenomenon, and that, for a long time, people were not able to distinguish between the normal slow memory issues that are part of normal aging versus the significant issues of memory loss that are associated with dementia?
I don't want to go into this in great detail, but we have you here and you have all thought about it a great deal. Is there any specific thing you can say is the reason it's taken so long for us as a society to understand that we have to investigate this from the basic research point of view?
Ms. Posluns: First, people are living longer. The biggest risk factor is still age. As the population ages, more of us are starting to freak out a bit when we can't find our car in the parking lot. I think it becomes more relevant to more people.
There is ageism and the stigma around it — and aging is not a sexy sell. There have been reasons why people haven't focused on it. However, as more people realize that it is affecting them personally or they are being touched by it, more attention is being given to it, which is why it is now becoming more of the vernacular than what it had been before. That is my observation.
Ms. Lowi-Young: I think it is fear and stigma. We talked about cancer and HIV/AIDS. They came to their own. There were champions, but people wanted to start to talk about it. People still today don't want to talk about dementia. The fear and the stigma that goes along with it is so deep in our society that to actually talk about it as freely as this is really so important. It is raising the issues about the movement and the grassroots of people who actually lived through the experience.
When my mother had dementia 25 years ago, they called it senile dementia. She was labelled with that, but she didn't have senile dementia. She had vascular dementia, but no one knew that was a type of dementia. Go back to the days when people said that person is senile. That is how we saw dementia. Today we are talking about it in a different way.
The Chair: That comes to what my opinion is on this. It is exactly that. We have shunted it aside. Now, through perhaps accident of time and observations related to other disease factors, we understand there is a basis to this and that there can likely be a great deal done to treat this as an issue that is perhaps never completely preventable but deferred to a very significant period of time.
I don't want to pursue that any further. I want to get back to my colleagues and their direct questions, but I wanted to get your input on that.
In this second round, if you could be efficient with your questions and answers on these, I will start with Senator Eggleton.
Senator Eggleton: Ms. Lowi-Young, you mentioned dementia-friendly communities a couple of times. How does that work and where do they work?
Ms. Lowi-Young: They work in a number of countries. Australia has put a major initiative in place. The U.K., again, has dementia-friendly communities, and they have actually gone to the British standards organization to develop standards, and communities can apply to be certified as being dementia-friendly. In Ontario, there are a number of initiatives. Bobcaygeon was a town that launched to be the first dementia-friendly community. The provincial government did some investment in creating other dementia-friendly communities. The Alzheimer Society of Ontario has brought together the various local societies to start working on it. B.C. also has put in a fair amount of money to create dementia-friendly communities, and a number of them have already been designated as dementia- friendly communities.
Senator Eggleton: What do you have to do to become a dementia-friendly community?
Ms. Lowi-Young: First, training police and fire — all the individuals who are dealing with people — to understand, when they find somebody lost, what they do and how they should interact with somebody with dementia. Also, training the shopkeepers in the community around how to support people to live well in the community. In other words, if your staff notices somebody having trouble either in the bank or in the grocery store trying to figure out change, how do you help the individual? If you see someone is confused or lost, what do you do? It is also important to create dementia-friendly communities around urban design, around signage to assist people with dementia.
Senator Eggleton: Does the city hall or city council get involved?
Ms. Lowi-Young: Yes, city council votes on wanting to become a dementia-friendly community.
Senator Nancy Ruth: I wondered why you hadn't mentioned Japan.
Ms. Lowi-Young: Japan has done a tremendous amount of work in the area of Dementia Friends. They were really the first country to embrace Dementia Friends. They call them something else, but they introduced the Dementia Friends concept.
Senator Nancy Ruth: How does that relate to building communities in small towns and cities?
Ms. Lowi-Young: Dementia Friends is a way for an individual to understand a bit more about dementia and to know individually how to act with people with dementia. Dementia-friendly communities are more broadly based in terms of organizations and so on. We see a great interaction. Obviously, you want to make people dementia friends and also create dementia-friendly communities.
Senator Seidman: Ms. Schroeder, I want to ask you about the coalition specifically with regard to the work being done on care needs of dementia patients across the country. We will further the conversation we started a while ago with Senator Raine.
I believe you have a national steering committee that includes a good number of community associations. Have you developed consensus positions on issues around dementia care?
Ms. Schroeder: Dementia hasn't necessarily been in our purview of resources. That being said, we have tended to focus on depression, mental health and long-term care with a focus on mood and behaviour. Again, it comes into play there.
We look to the consensus statement on dementia and the medical community that developed that. We refer to that piece. When you are being diagnosed with dementia and are looking at resources related to diagnosis of depression and dementia, we are trying to get at some of the specifics. We are partnering with a research team out of Providence in Kingston around diagnosis and treatment of depression in dementia.
We know that people moving into long-term care most likely will have dementia. The Canadian Institutes for Health Information reported that as many as 40 per cent of people being admitted into long-term care have either a diagnosis or depressive symptoms; that is, the actual depression diagnosis. Again, a change in mood and behaviour and the psychological components with that are really important. Our coalition has social workers, geriatric psychiatrists, nurses, psychologists, as well as consumer groups. The Alzheimer Society of Canada sits on our steering committee as well. We have come to some consensus around that, but dementia is always there, knowing that there are the behavioural and psychological symptoms but then dementia is also linked with mental health. We look to the treatment and assessment to the consensus statement on dementia.
Senator Seidman: I want to further that a bit because I do have a question for Ms. Posluns, if I might.
You are saying that there hasn't been, in your coalition in any case, though there may be elsewhere, some larger overview of assessing the care needs of dementia patients across Canada and some attempt to look at the jurisdictions that might excel and best practices. Is that the case? You may not know, but perhaps Ms. Lowi-Young might.
Ms. Lowi-Young: I think some work has been done. The provincial and territorial governments have come together and have put a plan in place to look at dementia and best practices. I don't know where it is at right now, but I know that they came to us to look at gathering some of that in terms of best practice. First Link comes up all the time in terms of looking at best practice.
Ms. Schroeder: Adding to that, the coalition was involved with the Mental Health Commission of Canada in writing the comprehensive guidelines for mental health services for older adults in Canada. Dementia was included in that overview. That report looks at that integrated health and social care you mentioned earlier and at both the physical and mental health of older adults and what that looks like.
Senator Seidman: Obviously, we have heard about a lot of work done on the ideology, the causes of dementia. You can see that my questions are focusing a bit more on diagnosis and care. You have touched on the caregiver issues, which we know are critical for women in particular. The Women's Brain Health Initiative is involved in international studies and in funding international work, if I understand correctly.
Ms. Posluns: No, we don't fund international work. We just advocate internationally.
Senator Seidman: Okay.
Ms. Posluns: The funding is here in Canada.
Senator Seidman: Do you favour research about diagnosis and care? Do you advocate for it? Do you get involved in it?
Ms. Posluns: Absolutely — research, education and care. The reason caregiving is so important is the chronic level of stress associated with caregiving, and that is for any illness. Such a chronic level of stress can in fact lead to a dementia. It's scary. I keep giving you bad news, Senator Nancy Ruth.
Caring for caregivers is crucial to avoid them succumbing themselves. Risk reductions could include yoga or maybe shopping, at least until you get the bill. Different people have different risk reduction strategies. It is very important to manage that chronic level of stress.
Ms. Lowi-Young: The Alzheimer's Society of Canada funds research — biomedical and quality of life. We have two streams. Unfortunately, we don't get as many applications for the quality of life. That focuses on care, caregivers, support, et cetera.
Senator Seidman: What about the knowledge translation? There is an awful lot of work being done, but who supports it? How does it happen? Does it happen?
Ms. Lowi-Young: As a critical part of our funding to support the Canadian Consortium on Neurodegeneration in Aging, one of our priorities is knowledge translation and exchange. We meet monthly to talk about the information and the results of the research that come out of the CCNA and how to translate that information from researcher to researcher, from theme to theme, from the researcher to the public and from the researcher to the policy-maker. We have created a framework so that we assure ourselves that the work done by the CCNA must have knowledge translation and exchange.
The biggest issue, of course, is research to practice — one area we're focusing on with regard to the CCNA. That needs to be done in terms of fundamentally taking the research and making a difference in practice. Sometimes it stops at sharing information in journals or presentations, but the practice is not being changed effectively as a result of the research.
Ms. Posluns: That is the part we love — taking the science and putting it out there in lay terms so that the general public knows what this means and what they can do to help themselves or their loved ones. That is really important. We like to address the younger group, the millennials, because if they can influence their peer group in their 30s and 40s to start looking after their brain health, they won't end up where their parents' generation is in terms of mental health.
Senator Raine: Ms. Posluns, you mentioned a magazine called Mind Over Matter. Is that available?
Ms. Posluns: Yes; I have a copy here. It is one of our translation education vehicles that we use. Strategically, there is a woman in her 60s and one in her 30s on the cover. My background is fashion retail, so I take that and apply it to how we communicate. Different people communicate differently. It is a way that we found to be successful, so we continue down that path. I am happy to share it with you.
Senator Raine: Senator Seidman asked my other question. Thank you very much for being here. It has been most helpful.
Senator Nancy Ruth: Senator Seidman, Senator Ogilvie and I all sat on Parliament's physician-assisted death committee. Here we'll be the "justice department" and the "health department." One of the big issues was the capacity to give prior consent. If a person has mental illness, does there need to be a psychiatric evaluation or some kind of evaluation apart from other diseases? The conclusion of the committee was that no, the general practitioner and another doctor should be able to assess the situation. But it is still current in the public dialogue.
I am curious to know your perspectives. People who get dementia have some capacity to consent in advance, and some with mental health issues may also have the capacity. What do you think about it? What are we going to do about it?
The Chair: That is an entirely different area, but we will give you a brief opportunity to respond.
Ms. Lowi-Young: Well, if I may start, Senator Ogilvie, the Alzheimer Society of Canada's position, as the board of directors has just reviewed and approved our position on physician-assisted death, is that we cannot predict future suffering and that providing advance consent for medical-assisted death should not be possible for people with dementia. We believe that in order to make a decision, one needs to be able to make an informed decision and consent at the time that the medical-assisted death occurs or is being planned. People with dementia in their later stages are not competent or capable of making that decision.
We absolutely support advanced care planning. We support a strong palliative care system to support people's quality in dying as well as in living. We also support the efforts to try to reduce the stigma of the disease. We do not support advanced consent. I think that is the input from people with the disease, people who are caregivers and people who deal with dementia on a daily basis.
Ms. Schroeder: As a small organization, we don't have the resource or the capacity to do a similar study. We don't have a position on this. We look to our partners and stakeholders. We are monitoring it but are not making a public statement at this time.
Ms. Posluns: I guess I can only share my opinion, which is that we don't mind changing our kid's diapers, but the fear is that they are going to have to change ours. When you are of sound mind, you think you don't want to live that way. It doesn't necessarily mean that if you're suffering you have a bad quality of life; it is just not the same quality of life you had before. Many people with dementia seem happy in their world. It's a tough question to answer, very tough.
The Chair: On that note, we need to remember that the issue isn't intended for the many people; it is the exceptional situation. That is what physician-assisted dying is about. It is not for the general palliative or other kinds of issues. We have to keep that in mind when we are dealing with it. However, as I said, that is for another committee to resolve and for Parliament now to resolve in its wisdom.
I want to remind the committee that tomorrow we have four witness groups. We will likely have a fairly full committee, so I indicate to you in advance that we will be limiting the question and answer time to five to six minutes in the first round so that everyone will be able to get in a question. Sharpen your questions overnight. We have the medical side of the issue tomorrow. There will be a lot of questions, and I want everybody to have an opportunity. I'm giving you fair warning that I want to ensure that every committee member gets questions in tomorrow.
Senator Munson: Who, what, when, where, why?
The Chair: You got it. You, there, tomorrow, and as part of the committee.
On that note, thank you very much for sharing your experience with us this evening. It's an exceedingly important area.
I did want to note that another part of the reading I've been doing as background refers to the community kind of organization, Ms. Lowi-Young, that you were expanding on in terms of certain areas and the examples where they've been attempting to redesign the institutional areas. There's freedom of movement to encourage continuous interaction of people, as opposed to the kind of warehousing that we see, certainly, in a hospital environment and in many senior care facilities where the free movement of people within those areas is not encouraged. The early evidence suggests that people are much happier, and it may well be that the progression is slowed by that kind of stimulus and so on, although it's very early days in the development of those sorts of programs.
You've given us a great deal to think about today, and we are going to pursue many of these aspects as we go through here. In fact, our objective runs along the line that you outlined at the beginning — a national strategy that identifies best practices and gets things together. Frankly, from all the things we've looked at in this committee, studying things in this country where that's needed, it looks like it's more likely that an Alzheimer's society will succeed as opposed to governments, but governments could support organizations that could actually carry this out. You're not blinded by the jurisdictional issue that seems to so strongly cloud everything else.
With that, I declare the meeting adjourned.
(The committee adjourned.)