Dr. Alain Beaudet (President, Canadian Institutes of Health Research):
Thank you, Madam Chair.
I'm pleased to appear before you today in my role as president of the Canadian Institutes of Health Research to provide you with an update on recent activities related to multiple sclerosis research in Canada. This devastating disease affects, as you know, thousands of Canadians. CIHR is committed to fund research that will alleviate the suffering of Canadians with MS and their loved ones.
First, I would like to share with you what CIHR has been doing on the issue of chronic cerebrospinal venous insufficiency and MS during the last three months.
As you may remember, in early September 2010, the Honourable Leona Aglukkaq, Minister of Health, accepted my recommendation that this issue be investigated in a standard scientific step-wise manner, first by determining whether or not there is an increased prevalence of venous malformations and impaired brain venous drainage in patients with MS as compared with healthy controls, and second, should this association be proven to exist, by proceeding with a clinical trial to evaluate the safety and efficacy of Dr. Zamboni's procedure. This position was endorsed by all provincial and territorial ministers at their September meeting in St. John's.
Already, seven studies sponsored by the Canadian and U.S. MS societies have been launched to determine whether there's a link between chronic cerebrospinal venous insufficiency and MS. To monitor the results from these studies, as well as from related studies from around the world on venous anatomy and MS, CIHR has set up a scientific expert working group.
This group is made up of the principal investigators of the seven MS Society-sponsored studies, the scientific leadership of CIHR and U.S., Canadian, and Italian MS societies, and a representative from the provinces and territories. The working group held its first meeting on November 23 in Toronto.
At this meeting, members of the Working Group reported on the progress they were making on their initiative, funding for which was provided in June 2010. Six of seven studies have been approved by the ethics committee and the seventh is in the approval stage.
The patient selection process for the trials is going very well, with two studies having already met their patient quota. Judging from the reports I have received, Madam Chair, I can say that stringent protocols are being followed and committee members can be assured of the quality and serious nature of the studies now under way. I am confident that these studies will determine whether or not there is a link between cerebrospinal venous insufficiency and MS and thus help us to decide if clinical trials on the procedure itself should be funded.
The experts did stress, however, that it was important to give researchers all the time they needed to conduct these trials, without putting any undue pressure on them. The Working Group also noted that Dr. Zamboni's proposed treatment wasn't without risk, as evidenced by the growing number of complications reported by Canadian patients after they were treated abroad and following the recent tragic death of one such patient.
Consequently, the experts recommend that all future therapeutic clinical trials include a treatment safety assessment.
The seven projects are progressing at an appropriate pace to meet their targets. The members of the working group agreed to meet next June to review preliminary results, and the MS Society of Canada will be posting summaries of these seven research projects on its website in the new year.
In the meantime, CIHR will continue to work closely with the MS Society of Canada and other stakeholders, such as physician associations, to share research evidence as it becomes available to build greater understanding of this devastating disease.
Patients should be discouraged, however, from seeking treatment abroad until more is known on the safety and efficacy of this treatment. But they should also be made aware that no physician will refuse to see and treat them for complications of a treatment received abroad.
I would also like to inform your committee that I will be providing an update of the working group's first meeting to provincial and territorial deputy ministers of health at their meeting on Thursday of this week in Toronto. This meeting will be a good opportunity for all participants to share information on any new developments with regard to this issue.
In conclusion, I would like to highlight the fact that CIHR is currently funding numerous research projects aimed at better understanding and at eventually developing a treatment for MS. In fact, CIHR has funded approximately $49 million in MS-related research since its inception.
Madam Chair, in closing, let me assure you that CIHR and all researchers involved are working as fast as possible to investigate this issue and provide the best science-based advice possible to patients and their families.
I will be pleased to keep the members of this committee apprised of our progress.
Dr. Alain Beaudet:
These are very good questions. Actually, they're all the questions that were discussed at the inaugural meeting that was held in November.
Certainly, I will be pleased to post the documents regarding the composition of the committee and a summary of the discussions at our meeting.
It's a very unusual situation. As you know, usually when researchers receive a grant, they do the research, and they're very silent about their progress because there's intellectual property involved, as you know, and there's also competition involved. Don't try to imagine that there's no competition between these groups. They publish the results, and it's only when the results are published that they start talking about it.
We're doing things very differently this time--very differently. We're asking them to share their results at every step along the way and to be totally open about them. I must say, the response has been fantastic. At the end of the meeting, they all agreed that they were a tad reluctant to proceed in that way, but it had been a fantastic day because they actually learned and shared and got ideas that will allow them to go faster.
They also agreed that they would—after what was, as you can imagine, a very long discussion—reveal their results in six months. Why six months? Why not faster? It was because they all felt that there would be so few results before the end of June that it could be misleading. But they felt that at the end of June they'd have a sufficient amount of preliminary data that it will be meaningful.
Now, we're talking about blinded studies that they will agree to “unblind”, so they can share. It's a very unusual situation, and we won't be able to share those results with the external world, for intellectual property reasons that you can understand.
Dr. Alain Beaudet:
It's an important message. I'm communicating with the heads of the various professional associations and colleges to ensure that the message is sent or transmitted.
It's very interesting that in the working group, most of these researchers are also physicians. They all see patients, they all see patients with MS, and most of the these researchers are linked to major MS clinics in Canada. They're the ones who noted that something had been carried in the press to the effect that they were not seeing patients who were coming back, that they were refusing to see them, and that they didn't treat patients with complications. It's absolutely false. Among these physicians and their colleagues certainly, they haven't heard of anyone refusing to treat a patient.
What has happened, however, and I think we have to be clear about this, is that in some cases patients have come to a doctor and asked for a specific test, by saying, for instance, they believe they have a restenosis and need a venogram to demonstrate it. If the doctor doesn't feel a venogram is warranted, he won't order a venogram and the patient will sometimes complain they didn't get treatment—which wasn't the case. So it's very hard to tell, because it's a “he said, I said” situation.
But it was very clear that these physicians in the working group were very concerned about this issue and asked us to make sure that the message was sent out that there's no patient who will not be seen by a physician, even if they had treatment abroad.
That's what I'm trying to do today, to send this message back to you.
I think it's a very important message.
Ms. Kirsty Duncan:
Thank you, Madam Chair.
And thank you to Dr. Beaudet for coming.
I want to pick up on a couple of things. There really has been follow-up missing. I gave one example; I can give many examples of where patient appointments have been cancelled and then they were told they would no longer have their specialist. There have been tests that are repeated every six months for drugs that have been cancelled, and people who have had clotting issues are being refused treatment.
I want to pick up on the expert panel that was talked about for the August 26 decision. If you're going to have an expert panel, I would like to see people who've actually been involved in the imaging and done the procedure be involved. I know there was fear of biasing the sample. Having said that, there were people on that panel who had actively spoken out against the procedure for over six months. We absolutely must have evidence-based medicine here in Canada. We have to. We do need to establish protocols around imaging, whether it's ultrasound, whether it's MRI. We need to know if we are going to be using stents. We need to establish these protocols.
As you know, I have concerns because I do think we're doing replication work, work that's been done elsewhere. If people had gone to the international conferences...Bulgaria, Canada, Italy, Kuwait, and the United States are all presenting the same data. That data is as follows: 87% to 90% of MS patients show one or more venous problems if ultrasound or MRI is used. Now the outlier to that was in Buffalo, and you have to look at those results. How was the study undertaken? Did you have someone who was trained in the operations? They also looked at first-degree relatives, and we know that venous problems may run in families. So there were issues.
Dr. Carrie brought up the Doepp and the Sundström papers. You have to look at the history of that. Those papers were published in six weeks. That's highly unusual in science. Dr. Simka's work out of Poland has done angioplasty on 381 patients, which people would describe as the gold standard; 97.1% showed one or more venous problems.
I'm going to hand that over.
Ms. Deborah Benczkowski (Interim Chief Executive Officer, Alzheimer Society of Canada):
Thank you. Good morning.
I'm really pleased to be here, Madam Chair. I want to thank all the members of the committee very much for giving the Alzheimer Society of Canada an opportunity to speak before you today.
Before I begin, I just want to comment that over the last several weeks I've had the distinct pleasure of being here in Ottawa to meet with many members of the House of Commons, including visits I've made recently, along with my colleagues at the Health Charities Coalition of Canada. We had a recent day on the Hill.
We came to Ottawa to discuss with parliamentarians three things of incredible importance to our organizations: one, the need for a national dementia strategy; second, the need for increased funding to the Canadian Institutes of Health Research; and third, to discuss specific improvements to income health security. All are of extreme importance to caregivers who are caring for people with dementia.
Overall, I've been very encouraged by the reception that we've had here in Ottawa that we've received to our petitions. I hope the work of this committee and the work of members of Parliament—mostly all of you around this table—will result in real benefit to Canadians who are affected by neurological diseases.
Alzheimer's disease is not a disease that we can ignore. It has an overwhelming impact on those people who develop it and also on the families who care for them. There is a good chance that one of you in this room knows somebody with Alzheimer's disease or a related dementia. Some of you may have been affected by it, be it a friend, a relative, a colleague, or someone you work with. Alzheimer's disease affects more and more of us every year, and the number of cases continues to rise with our aging population.
Alzheimer's is a form of dementia with no known cause and no known cure. It's a fatal disease; it's terminal. People can live with it for five to seven years after their diagnosis. It's also a degenerative disease, which robs people of their intellect, identity, independence, and dignity.
Right now we know that there are currently 500,000 people in Canada who have Alzheimer's disease or a related dementia. We know that this will more than double within a generation, so we're looking forward to 2038.
While there's still much unknown about the disease, we have learned that Alzheimer's disease results in a progressive decline in multiple areas of function. These areas of function include memory, but also reasoning, communication skills, and the skills that people need to carry on their everyday activities. Alongside this decline, unfortunately, many individuals develop psychological symptoms, including depression and changes in mood and behaviour, which can significantly complicate the kind of care they need.
While the number of people affected by dementia in Canada and the associated costs in dealing with this disease are daunting, the impact on those with the illness as well as their families is quite profound.
In our view, Alzheimer's disease and other forms of dementia should no longer be misconstrued as inevitable consequences of aging, nor can it be acceptable any more to pretend that there's nothing we can do about it.
Alzheimer's disease presents a huge challenge to society, both now and will increasingly in the future. Through the Alzheimer Society's study, Rising Tide—which I hope you've all had the opportunity to have a look at, and if not, we'll be sending it to you—we know that dementia imposes a cost of $15 billion a year today, but within a generation and without concerted government action, the costs will climb to over $150 billion a year.
I know that you, at this committee, have already heard that people who are caring for someone with dementia will experience the challenges associated with the disease in their own unique way. I've heard it said that if you know a person with dementia, that's all you do: you know one person with dementia.
It is important to recognize that there are many different approaches to supporting someone with the disease, and caregivers often need to explore a variety of techniques and strategies to determine what works best for them. Everyone is unique.
The cumulative opportunity cost of informal caregiving for people with dementia represents a substantial cost to our economy. As you've already heard, this burden is not unique to the families of people with dementia. People with Parkinson's disease, multiple sclerosis, amyotrophic lateral sclerosis, and other neurological conditions also require tremendous support from family members and other informal caregivers. This, of course, translates into a huge economic cost for caregivers.
To address these problems, the Alzheimer Society is calling for a national strategy to address all neurological conditions. In public policy terms, it seems to us that Alzheimer's disease, along with many of these other neurological conditions, has been largely ignored by policy makers in Ottawa. Today, there is no national or federal strategy for Alzheimer's disease, and the federal programs, research funding, support, and income assistance pale in comparison to the enormous and rapidly escalating health, economic, and social costs and impacts of this devastating disease.
I congratulate all members of the committee for your study on the state of research and the impact that neurological conditions have on Canadian families. The Alzheimer Society urges you to recommend a national brain strategy, a coordinated approach to assisting all those who are living with brain conditions, in your report to the health committee.
We at the Alzheimer Society have been working together and collaborating with Neurological Health Charities Canada, the NHCC, and its members, who I believe are now up to 24.
The aim of a national brain strategy in Canada is to ensure that significant improvements are made to research, prevention, and support services. The simple goal of a brain strategy should be to create a catalyst for change in the way that people with neurological conditions are viewed and cared for in Canada.
We have been told by politicians that there is no appetite for another national health-related strategy. However, we know that national strategies have been hugely successful and have been developed for a long list of other health issues, many of which have a lesser impact on Canadians' health than neurological conditions do.
We know that a rising tide is coming. We know that the need to act is now. The need for a national brain strategy will never be more important nor more urgent than it is at the present time.
Dr. Jack Diamond:
Thank you. I'm very pleased to be here.
My ultimate endeavour is to make you join us in thinking this is the right time to put more money into research. My specialty is taking the mystique out of mystical things, and if you don't mind, I'm going to do this with Alzheimer's disease.
I will remind you that 100 years ago, Dr. Alzheimer had a patient with what was then called senile dementia. It was later called Alzheimer's disease. She was only 49, by the way, and when she died a few years later, he did something that was relatively unprecedented at that time; he looked at her brain in the microscope and he saw things he did not see in the normal brain. It was as if you'd taken a pot of pepper and shook it all through the brain. You had all these little dots that you saw in the microscope, and he called them the “plaques”. Then he looked inside the nerve cells, which you also can't see by eye but you can see in the microscope. They were as if you had a ball of wool inside that started to unravel, which he cleverly called “tangles”. The plaques and the tangles that he described are often called the hallmarks of Alzheimer's disease.
Since then, in that 100 years, we've discovered that the plaques, first of all, are made of a protein. It's called beta amyloid—it doesn't matter whether you remember the name or not—and it's a normal protein. We all have it in our brains, but in Alzheimer's disease the concentration of this protein goes up, and as it goes up, the molecules start to stick together until enough of them stick together and they deposit down as a plaque. The tangles he saw in the nerve cells tend to come afterwards. Finally, it was discovered that the real toxicity that was going on was not due to the plaques as such but due to the molecules even before they had stuck together and formed the plaques. In fact, as they start sticking together, they become toxic.
I hope this background will allow you to understand why research has had one primary objective in Alzheimer's disease, and that is to get rid of this suspect protein, this amyloid that accumulates. If you get rid of that, you won't get the toxic effect on the nerve cells, you won't get the tangles, the nerve cells won't get sick and die, and we won't get the dementia.
That's what the dementia and the brain has been all about in Alzheimer's disease, until the last year and a half to two years. We're at a crossroads now. I'll explain this by telling you about two or three phenomena, and you'll see immediately what the point is.
First of all, they looked at a lot of very old people, people in their nineties and hundreds, who did not have a dementia. They did not have a dementia, but they looked at their brains and they were full of plaques and tangles. If a pathologist had looked at their brain, he would have said they had Alzheimer's disease. Well, they had Alzheimer's disease of the brain, but they didn't have a dementia. The dementia is what we're concerned with—the sort that Debbie just spoke about. That's what we're worried about: the dementia. I don't care what's in my brain as long as I don't have a dementia.
The second observation comes from 10 years ago. One way to get rid of this suspect protein was to make a vaccine against it. A vaccine, essentially, is to create antibodies in the body. They circulate in the body. They recognize the dangerous molecule or virus, or whatever it is you're trying to get rid of. They neutralize it and then the cells of the immune system carry off the neutralized product.
So they made a vaccine. The vaccine worked well on animal models, so they tried it on humans. They ran it for two years, and then some of the people started to get a potentially lethal inflammation of the brain. All over the world the vaccine studies were stopped. But the people didn't die; they continued on. Then some of them started to die, and when they looked into their brains, the vaccine had worked. The plaques had virtually disappeared. To all intents and purposes, they'd cured Alzheimer's disease, but the dementia was unchanged.
There are more and more examples where we're seeing that these classical signs of Alzheimer's disease in the brain don't necessarily match up to the thing we're worried about, which is the dementia. Although this sounds very dismaying, we have now realized there were three or four other things that Alzheimer didn't see in the brain that were looked at—some people have always worked on them—which are also characteristic of Alzheimer's disease, but they haven't been the primary target of the research. Now they're coming into focus as what should be a very urgent target for research, not just to get rid of this amyloid, which has driven the research, as I say, for the last 10 years, but to attack these other areas.
To give you just one example of these other areas, for every nerve cell in your brain, there are 10 cells called glia cells; I call them the caregiver cells. They are the cells with all the intelligence in the brain. The nerve cells are kind of dummies, really; they can't do much at all. Compared to a skin cell, a nerve cell is a real idiot. But the reason it does so well is because of these caregiving cells. They tell it everything. They tell it to grow, they tell it to stop growing, they tell it to make branches, they tell it to make new connections.
So the glia are really the bright guys in the brain, and it's now been discovered that they are impaired in Alzheimer's. If they were the primary target of the disease, you can understand why the nerve cells get sick and die. This is just one example of a new approach to research, and it's very exciting.
Now in the Alzheimer Society, one of our main thrusts is to produce the researchers of tomorrow. We have a very active training program. Those researchers are absolutely primed now to begin their careers with this new thrust into Alzheimer's research, which I believe is going to produce the cure—along with the original thrust. But of course we can't do it unless they have the money to do the research.
Right now, 40% of 100 hundred applicants to most agencies get funded—although the agencies would like to fund the other 60%. It happens with us; it happens with CIHR. That's where we need it.
And they're young, they're ready to go, they're bursting with enthusiasm, and they're dedicated to Alzheimer's research--but they can't get the money.
I think I'll leave you with that thought as to how we can really combat this disease by just injecting money into the research.
Mr. Jim Mann (Member, Board of Directors, Alzheimer Society of Canada):
Thank you, Madam Chair and members of this subcommittee, for holding hearings on this important topic, Alzheimer's and dementia.
With the increasing prevalence of dementia in Canada and the impact on families, employers, and the economy, as detailed in the Rising Tide report, this event is very timely. The numbers are staggering, but so is the disease to each person. I know this because I have Alzheimer's. I was 58 years old when I was officially diagnosed.
Today I appreciate this opportunity to personalize the disease, to put a face to the name “Alzheimer”, and to shatter the stereotype of a person with Alzheimer's. You know it, the image that comes to mind when you hear that a person has Alzheimer's. For many, it conjures up a vision of a person in the final stages of final disease, and probably that person would be well into their eighties. Well, I read about a woman in Canada being recently diagnosed with Alzheimer's at the age of 39. I dare say that stereotypical person with Alzheimer's is not an accurate reflection.
But let me personalize this discussion and tell you a bit about my story. My new world of reality started in February 2007, when my doctor informed me that I have Alzheimer's. That was the official date of this journey. But there were clues much earlier.
Could my symptoms have been as early as the early 1990s while working here in Ottawa? I will never know for sure, but I recall a few occasions when I would be speaking with a member of Parliament only to realize that I could no longer remember his name or his party affiliation. I would be frantic as I scanned the office for clues to the person's identity, but found none. Where was the picture of that member with his leader when I needed it? Needless to say, the meeting would not last as long as planned, and I'm sure the impression left would be less than favourable.
But I continued. I retired, and with my wife, who is with me here today, returned to my hometown of Vancouver and set up my company. And still there were more clues. As for about the three years prior to my diagnosis, I did no business and made no money, which is not a good economic model to follow. In fact, a year or two before my diagnosis, I said to my doctor as I was leaving his office that we needed to talk about my memory problems. We didn't, until I forced myself to confront the reality—the stark reality, as when standing in the middle of a regional airport and feeling as I did on my first day of school: I was so confused, I almost cried. Or as when getting into the car and a minute later not remembering where I was headed or why; sometimes I would have to pull over just to get my bearings.
Hopefully you get the sense that these memory lapses were affecting my daily living. They weren't momentary “where are my glasses?” or “where did I put my keys?” events; these were profound, and they were scaring me. That is what finally took me to my doctor's office and to the official start of this dementia journey, this three-year-plus journey—a journey that is not a vacation, believe me.
I have been asked, why worry about getting a diagnosis when there is no cure? It's because getting it lets me plan for the future while I can still have a say in my future. It's all about being proactive and being in control. An early diagnosis of Alzheimer's or related dementia can offer early treatment that may stabilize or slow the rate of decline. You get a chance to be educated on the disease and to learn, for example, that socialization and physical activity such as walking are excellent programs.
So how have I adapted? First of all, the reminders are daily. I become disoriented in my own neighbourhood of 17 years while walking my dog and periodically find myself on a route I had not planned to take. After the first time, I registered immediately with the Safely Home program offered through the Alzheimer Society. For a person who loved business and the accompanying stimulation, and who thrived in that environment, I am now very limited in my daily activities. Is that frustrating? You bet it is.
My company, after 14 years of operation, has been officially dissolved, as paid work is no longer feasible. I only use the stove when my wife is around. I no longer drive a car. I write notes for everything. I take notes on the bus with me to remind me where to get off, and then I have a note for what my tasks are when I reach my destination. Otherwise, life continues, and I try to stay active.
I volunteer as a board member with the Alzheimer Society of Canada as well as the provincial society of British Columbia, and I have returned to my first love, advocacy. I advocate to educate, as today at this hearing or with the person sitting next to me on the bus or the airplane. I only need a minute to take advantage of what I call “teachable moments”. Through this short interaction, the person will learn that a person with Alzheimer's or a related dementia has a contribution to make and that Alzheimer's is not an old person's disease.
By telling my story and recounting my personal experiences, I hope people will see a new picture of a person with dementia. Perhaps, too, that lesson will be passed on to others.
I appreciate this opportunity to give you a glimpse into my world of Alzheimer's and to let me take advantage of another teachable moment.
Dr. Robert Lester (As an Individual):
Good morning. Thank you very much for inviting me.
I'm going to be echoing many of the things I've just heard. Interestingly, I will also refer to this as a journey, and I've written something I've called A Journey into Dementia--The Absence of Presence. Let me introduce myself. I'm a professor emeritus of medicine at the University of Toronto. Until recently, I was executive vice-president and chief medical executive at Sunnybrook, and currently I'm a consultant with the Ontario Hospital Association. I only mention this to illustrate that no matter how easily one can access clinical or research expertise, there really is very little help in terms of navigating this journey.
My interest in dementia was triggered by my wife's development of advanced frontotemporal dementia. I feel that my experience of over 45 years in health care, together with my experience as a caregiver, has equipped me to address you today.
As you may have heard, Alzheimer's disease represents only one form of dementia. All forms of dementia are diseases of the brain. As you have heard, they are not a normal part of aging, and no one is immune. My wife was diagnosed at 62, and as I think back, the process likely started in her mid 50s. Dementia erases memory, alters personality, steals the ability to think, and makes simple daily tasks such as eating or getting dressed impossible. It robs independence and eventually takes life.
Judy, who just turned 70, is currently confined to a wheelchair, is incontinent, is unable to speak, has to be fed, and does not recognize me, her children, or her grandchildren. I always thought the worst thing in life would be losing a loved one to cancer or heart disease. I now realize that as painful as that must be, there is an end and to some degree life can go on. For me, watching Judy deteriorate slowly over several years seems so much worse. Death seems to be occurring in an incremental fashion.
Perhaps the only good thing is that I believe and fervently hope she is unaware of what is happening to her. Yet in some way I pray that she feels comforted by my touch and the love that surrounds her. As difficult as it is, it is important for us to remember the Judy she was: wife, mother, friend, successful professional. We have strived to respect her for both who she was and, importantly, who she is now.
As you've just heard, the scary part is that the prevalence of dementia is increasing at an alarming rate. As the prevalence grows, so does the community of families and caregivers who look after loved ones. For every person with dementia, 10 to 12 others are directly affected.
With the increasing incidence, it is likely that each of you in this room will be touched by this disease. You will develop dementia, or a close family member will, your spouse or your parent. Caregiving is a critical issue for people living with loved ones suffering from dementia. Family caregivers are the invisible and hidden backbone of the health and long-term care system in Canada, contributing over $5 billion of unpaid care. Caring for someone with dementia is difficult and distressing and it often leads to financial, mental, and physical health problems, further taxing the social and health care systems. It currently is costing me approximately $70,000 per year to provide the care that I believe my wife deserves.
Let me give you another example. My wife is currently in a world-class, long-term care facility. Nevertheless, the vast majority of their clients have either family or private caregivers to support the limited number of staff necessitated by budgetary constraints. I recently spoke to another husband who comes in several hours every day to look after his wife. With tears in his eyes, he said he realized his obligation, but the days were getting longer and he was getting so tired. His comments reinforced for me the tremendous burden that many family member caregivers suffer. Paralleling the three stages of dementia, three stages of caregiving have been identified. The early stage is a time of surprise, fear, denial, confusion, and sadness. In the middle stage, caregivers experience frustration, guilt, and resentment. By the late stages of caregiving, there is sadness, guilt, regrets, relief, solace, and eventually closure.
For my part, my immediate reaction to Judy's diagnosis was denial. This could not be happening to us. Judy was so bright and vibrant. Certainly she would not progress in a way that would affect our lives for many years to come. I was wrong. As her disease progressed, denial was replaced with anger. All those years of work and planning for retirement, our trips, our sharing getting old together, our enjoyment of our children and grandchildren, all going up in smoke.
As the Judy I knew is now gradually but inexorably disappearing, despair and sadness have supplanted anger. More recently, I have been introduced to a concept known as ambiguous loss. Although all losses are touched with ambiguity, those who suffer ambiguous loss, a loss without finality or resolution, bear a particular and challenging burden. Such ambiguous loss can occur in dementia that takes a loved one's mind or memory away. The person you care about is physically present but emotionally and cognitively missing. As there is no end to ambiguous loss, it freezes the grief process and prevents closure. It tends to paralyze functioning. Tensions build up as those of us who are experiencing ambiguous loss can be filled with conflicting thoughts and feelings as well as guilt. We may dread the death of a loved one who is hopelessly ill while at the same time longing for closure and an end to waiting. We can be both angry and sad--angry at the demands of caregiving while at the same time sad because we are losing a loved one. Of all losses experienced in personal relationships, ambiguous loss, to me, is the most devastating because it remains unclear and indeterminate.
Dementia is more than an important health concern. It has the potential to overwhelm our health care system if fundamental changes are not made in research funding and care delivery. Delaying the onset of symptoms of dementia by only five years could, over time, decrease by 50% the number of people with more advanced diseases requiring complex community or institutional care. The savings of health care dollars would be huge. Is there another disease where the investment in research, health promotion, early detection, and intervention could have a greater payback to society?
I believe I was asked to make a few recommendations, so let me do that at this time.
Number one is the one you've already heard, which is to ramp up research spending to a level that is at least commensurate with the scale of the disease. It has been estimated that this would involve a 15 times increase to match research in heart disease and a 30 times increase to match cancer research. We need to identify people at risk and introduce interventions before they are symptomatic and experiencing brain cell deaths. We can't do this without a massive concerted effort on the research front.
Patients, especially chronically ill patients, such as patients with dementia, are journeying through very complex care systems, and we too often drop the ball. Hand-offs do not go well. Patients get confused. We get confused. Systems are not modernized. To me, the hallmarks of the care system that we need are integration, cooperation, and seamlessness. Unfortunately, they are not present and will require change.
Some of the things one could look at include increasing or redistributing resources to increase the number of long-term care beds, to relieve the alternative level of care problem in acute care hospitals that allow both patients in acute care and long-term care to receive appropriate treatment in the appropriate setting; assigning case managers to people with dementia to help them navigate the complex health care system we have; improving education of primary care providers in the public regarding the signs of dementia and the need for early diagnosis and intervention; enhancing programs that bring people to care, such as adult day programs; enhancing programs that bring care to people, such as Meals on Wheels, transportation to appointments, assistance in shopping, assistance in care for their homes, supportive housing; protecting and supporting caregivers, recognizing the importance of their role, both in terms of keeping families intact and in terms of reducing reliance on the public health care system; giving caregivers the tools they need, knowledge and training, and protecting them from poverty and giving them a break from time to time, so they can stay engaged without falling apart themselves; and finally, improving the quality of lives of people living in long-term care homes.
Thank you very much for listening to my presentation.
Ms. Shannon MacDonald (Director, Policy and Partnerships, Neurological Health Charities Canada):
Thank you, Madam Chair.
I'm delighted to be with you today. I was joking earlier that it's nice to be invited up to the big table, because I've had the pleasure and privilege of observing some of your hearings and have been very moved and compelled by much of what you've heard.
I'm honoured to work on behalf of Canadians living with neurological conditions and their families. I know that members of this subcommittee really appreciate the weight of the phrase “and their families”. You've heard compelling testimony to the fact that the population impacted by neurological conditions is far greater than the five million Canadians who are actually diagnosed with a condition. Bob, this morning, has referred to ten to twelve people affected for every one person with dementia. And I don't think I'll ever get Greg McGinnis' story out of my mind. Nor do I want to.
As the NHCC lead, I also have the pleasure of co-chairing the implementation committee for the national population health study of neurological conditions. I work in partnership with the federal health portfolio and my co-chair, who's the director of chronic disease at the Public Health Agency of Canada.
I'm pleased to report to the subcommittee that the study is well under way. It will ultimately consist of survey elements led by the Public Health Agency; up to 13 research projects led by pan-Canadian teams right across the country; community-building and knowledge exchange led by the NHCC; and economic costing and micro-simulation work that will come together in the final phase of the study, which concludes in 2013.
I have provided you with a couple of copies of the newsletter Brain Matters. This is a communication piece we put out specifically about the national population health study. Some of you will have seen it previously, when it was originally circulated.
Given the testimony the subcommittee has heard to date, I thought the most value I might contribute to your study would be to share information about the NHCC's vision of a national brain strategy. I know that the concept has been raised this morning, but it has also come up in some of your other hearings. I thought it would be helpful to talk about what it could entail.
Neurological Health Charities Canada, as you know, is a growing coalition of health charities, each with a particular interest in one or more neurological conditions. We began in 2008 with just 12 members. I believe that Madam Chair was kind enough to share some remarks at the launch of the coalition that took place on Parliament Hill in June 2008.
From 12 members just two and a half years ago, we have grown to 24, with the vast majority of our membership providing service and support directly to individuals and families living with a neurological condition, and many, if not most, organizations funding innovative biomedical, clinical, and population health research.
The coalition came together with two primary objectives. The first was to generate support for a national population study, because we simply do not understand the picture of neurological conditions in Canada. I know that's part of your work and some of what you're working to uncover. We simply haven't been tracking or monitoring data that would tell us the full story.
The second objective was to really sincerely address key issues facing Canadians living with neurological conditions and thereby address some very significant issues facing Canada overall.
Our organizing principle was simple: we focus on needs, not diagnosis. We learned quickly that regardless of the condition or the name of the diagnosis, people with neurological conditions experience remarkably similar situations and needs. I know that you've heard this from other witnesses, and I'm confident that if you had all 24 organizations represented here today you would hear the same message, whether they were talking about people living with Huntington's, dystonia, epilepsy, a brain injury, or any other neurological condition.
From this position of common need, we developed the document you have before you, entitled A Brain Strategy for Canada. This document identifies seven themes that make up the framework the NHCC proposes for a national brain strategy. The issues are ones you've heard all around this table: research, prevention, integrated care and support, caregiver support, income security, genetic privacy, and public education and awareness. These themes are unanimously supported by the NHCC membership.
People are often surprised that we have been able to build such strong consensus, when you consider the number of organizations involved and the number of stakeholders represented. But I can tell you that the NHCC membership unequivocally agrees that these are the areas we must work on together to make a difference to people living with all neurological conditions in Canada.
Let me be clear: we must work together. This work requires the collective commitment of health charities, industry, and governments at all levels.
Having said that, I recognize that this subcommittee has a particular interest in what the Government of Canada might contribute to the process. We believe the Government of Canada is in the unique position to lead in four important ways: first and foremost, by acknowledging and recognizing the brain as one of Canada's most important health, economic, and social drivers; second, by investing appropriately in brain research, given the significant population affected, the massive impact that you've heard about, and the NHCC will be coming forward to the government with a proposal for a five-year public-private partnership that builds on the annual investment of donor dollars that the NHCC members currently make in neuroscience research; third, we believe the Government of Canada can demonstrate leadership by raising these issues at the appropriate federal, provincial, and territorial tables, starting with health, human resources and skills development, and finance; and fourth, we believe the government has a role to play in bringing constituents together to work on what's possible, including the health charities' industry and all levels of government.
By recognizing that provinces and territories will play an important role in any brain strategy that has a national scale, the NHCC has been working with the Ontario Ministry of Health and Long-Term Care to develop the foundation for an Ontario brain strategy that might inform a larger national project. Our hope is that this work will demonstrate the role that provinces and territories can play, in alignment with and as part of a national strategy.
In closing, I'd like to suggest that we think about a national brain strategy in a new way. As Debbie has mentioned earlier, the default position seems to be focused on cost containment and the very real need to control expenditures in an incredibly difficult economic environment. But this is more than a cost issue, and I'd like to suggest that we start talking about a brain strategy as an innovation, inclusion, and prosperity strategy. Generating knowledge, maximizing brain power, enabling independence and productivity, educating Canadians to be well, to be inclusive, and to be supportive of one another--that's what I think about when I think about a national brain strategy. It's fresh, it's emergent, it's collaborative, and it holds real potential for transformative change.
The NHCC envisions a comprehensive strategic approach that connects the collective pool of work, builds on existing programs and investments, and calls on elected representatives from all parties to work collaboratively to develop a brain strategy for Canada.
On behalf of the NHCC and all of our members that you haven't been able to hear from, thank you for your interest, for your sincere commitment to making a difference, and for the opportunity to speak with you today. I look forward to your questions.
Dr. Robert Lester:
Let me just start, because as I indicated to you, I'm a physician. I totally missed my wife's diagnosis, and it was only caught because I developed a very temporary neurological problem that brought me to the attention of a neurologist; he then recognized, as I was coming out of my problem, that I was going to be okay, but he was worried about my wife.
So I think that's a very important question. I was just thinking about it as I was on the plane, while they were de-icing it. There are the sorts of things that happened when the stroke strategy was introduced, and they had those very visual types of things on television--you know, with the pounding. I think that is really a very visible way that people can understand what is happening. What are the early signs of dementia? What is dementia versus normal aging? How do you tell them apart? I think that's a really important thing.
As part of that, I think there's also this whole education piece and this whole issue of the stigma. People are afraid to talk about it, either people with early dementia--it is an exception--or caregivers who are embarrassed about the fact that their loved one has developed dementia. I think somehow dealing with the stigma is really going to be an important issue.
I think the next thing is the whole issue of the primary care provider and equipping that primary care provider with the tools for the early diagnosis intervention. As far as I know from talking to my colleagues, there is no one single tool that most family doctors can apply in order to begin to even suspect dementia, nor is there any way in the system that family doctors are rewarded for spending the time to diagnose dementia. Somehow I think looking at the whole fee schedule is probably beyond this committee, but I think it's an important issue, because right now doctors, including me when I was practising, are rewarded for volume, not for quality and not for outcomes. I think somehow changing how doctors get rewarded...so that primary care physicians actually spend the appropriate amount of time to diagnose dementia and are rewarded commensurate with that time.
Those would be my early thoughts on that.
Mrs. Carol Hughes:
Thank you. I apologize, but sometimes we have to use French to give the interpreters an opportunity to showcase their skills.
First of all, thank you very much for your presentations.
Mr. Diamond, I found your presentation extremely interesting. I think it's one of the best that has ever been made to this committee.
I sympathize with your plights, Mr. Mann and Mr. Lester. My sister is 57 years old and she was diagnosed at 50 years of age. We knew that she was having some problems before then, but the diagnosis was not confirmed until she was 50 years old. We do not know how much time she has left. The fact of the matter is that it is extremely difficult for those who receive this diagnosis to get some support. Clearly, this is a problem, just as it is a problem understanding what a person with Alzheimer's is going through.
You talked about many things, Mr. Lester. Some are saying that the problem lies with the provincial government, that the provinces are responsible, but I believe that everyone, provincial and federal members of Parliament alike, have a role to play in ensuring that these people get the support they need and that they are treated well when they are institutionalized.
Most people feel frustrated. You are correct when you say that many people perhaps feel ashamed to be suffering from Alzheimer's. They try to hide it from everyone around them.
It's even harder for the caregivers. You pinpointed the problem. While the federal government claims to offer support to those who care for family members or a friend, the only type of support available to them is employment insurance compassionate care benefits. Unless I'm mistaken, caregivers are entitled to receive such benefits only for six weeks. Six weeks isn't much when you're dealing with an illness like this.
A tax credit is also available, but it isn't enough, in my opinion. Tax credits are not really useful because they involve small amounts. Family members who are unable to care for a brother, sister or parent at home face a major problem.
What steps should be taken to help caregivers of Alzheimer sufferers? Anyone?
Ms. Shannon MacDonald:
To answer your first question, the study is going well, but it's a large study and there are lots of people involved. We took the time at the onset of the study to engage the community of stakeholders to determine the priority areas of study, and 3,000 Canadians across the country contributed to that understanding. Then we brought together two workshops of scientists--about 60 scientists from across the country--to have the same conversation.
We knew when we framed this study a year ago that we were addressing the right issues. Fifteen million dollars is a lot of money, but it's not enough. So we wanted to be very careful and know that we were spending the money in the most effective way.
We have a study that's framed around understanding more about the prevalence and incidence, the actual state and prevalence, of these conditions in Canada; understanding the impact to individuals, families, and society as a whole; understanding health services and what's available and what's needed; better understanding risk factors for onset and also for progression, because there are secondary prevention issues that don't get dealt with very well either; and really understanding and be able to paint a very robust picture of neurological conditions in Canada so that it will inform our policy and decision-making.
The status of the study is that we have some surveys out in the field. Statistics Canada has survey projects under way as part of the study. We have nine research teams, which are large pan-Canadian teams across Canada that are now funded. Funds are flowing and contribution agreements are signed, I'm happy to report. Their work is getting under way.
We have a progress meeting scheduled for March 1 and 2 where all of those teams will come together and do what Dr. Beaudet was talking about this morning, which was the open sharing of information even though you're still in the middle of your project. The foundation of this study is that people will share throughout.
I don't have any findings to report to you, but one of the happy consequences of this study is that what we have seen from that very first meeting of scientists--which we actually convened before the study was announced--is a level of collaboration and collegial information sharing and knowledge exchange that has never existed within the neurosciences in Canada before, particularly among researchers who do clinical and population-based research. We experienced many situations where colleagues were actually down the hall from each other, but because one works on epilepsy and one works on MS, they had never actually met each other.
That has been a tremendous benefit of this study. We now have teams. We have expert advisory groups in each of those areas of the study that I mentioned, all working....
So the vast majority of Canadian researchers working in the neurosciences are in some way connected to this study, perhaps because they are contributing on one specific piece of information about the condition they work with or perhaps because they are a PI or a co-PI on a very large project.
I wish I had more to report to you in terms of findings, but certainly we are seeing very positive offshoots of the study, and we will look forward to March 1 and 2, when we have our first progress meeting.
Dr. Jack Diamond:
I'll address this.
We took a chance here in the Alzheimer Society. CIHR, which is obviously the main funding body in the country, has a certain format and style of how you have to apply and how it's discussed and all the rest of it. Now, driven by necessity, when I was looking to get people on to our panels, most of the people I wanted were already on CIHR panels, so I had to make our process more attractive and make it easier for them to do.
We have actually--our society alone--hugely cut down some of this process. I would say we've cut it down to a quarter or a fifth of what CIHR, which is a traditional national body in most countries, demands, and we get away with it. There are no CIHR people here right now, but I feel like saying to them, why do you give your reviewers such a tough time—the reviewers I'm talking about now—and the applicants when it isn't necessary? I personally don't believe it's necessary, and our program runs efficiently and well without having this lengthy, tedious need that CIHR imposes.
We had three people successively who were on our panels from the States, and they all said how marvellous they thought our Alzheimer Society program was in this regard. So it can be done. We do it, but I think CIHR does not.
Dr. Robert Lester:
As I said earlier, I think that education of both the public and the primary care health providers would be extremely important in preventing or early detection of the disease and therefore early intervention. As I said, if you can intervene earlier, you can probably slow the progress. So I think the strategy around education is really a relatively inexpensive way of addressing some of the early problems that people with dementia have.
I will just give you an example with my own case. My son lives in Scottsdale, Arizona. Early on, he said to me, “There's something wrong with mom, because she can't find her way home when she goes out on the street.” I said, “All the houses here look the same. They're all brown adobe houses. What's the problem?” Given that I was living with her, I didn't see it, but my children who were not seeing her on a regular basis did see it.
I think this whole concept of education is extremely important, and it goes back to the whole issue of removing the stigma, which allows people to come forth.
I know, for example, that when my wife was diagnosed, friends of 60 years disappeared. They totally disappeared. Family disappeared. Colleagues disappeared. No one visits my wife except me and my daughter--virtually no one. I think if someone has cancer or someone has heart disease, that doesn't occur. People continue to participate. People just don't know what do when someone develops dementia. They don't know how to react. I think this whole concept of what it is, how you deal with it, how people identify it early, is really critical to the strategy, from my perspective.
Thank you so very much.
I want to thank the panel for coming today and giving us your very insightful information.
This committee, I believe, is a very unique committee. People are very committed. You understand that at the committee everybody has their wish list. If you wanted to pay astronomical tax dollars, we could put everything into health care. But the strategy around neurological disorders is something this committee wanted brought to the forefront, to do what we could to address it. It is, I think as never before, an emerging health issue that's really never been addressed the way we need it to be.
But I have to tell you quite honestly that if you brought people in talking about cancer—talking about anything else—they would come with the same zeal and the same demands, and probably the same picture. What makes this different is that this is something, in our view, that we've never really had in front of a committee. And I give credit to all my colleagues who have taken up the torch and really want to get this examined, as we all do.
I think all of us have had someone in our lives or someone who has touched our lives.... This is not foreign to us because we are members of Parliament, as Ms. Hughes has so eloquently attested to. So the understanding about caregiving and about this research is of paramount importance for us to hear and to put forward.
Thank you so much for joining us today.
I will adjourn now until our next meeting.