Subcommittee on Neurological Disease Committee on Dec. 7th, 2010

[Dr. Alain Beaudet]

Actually, there are several.... An article came out yesterday about another breakthrough study by a British group using stem cells to regenerate myelin on the demyelinated fascicles. There are several drugs in the pipeline. One was recently accepted by Health Canada. We learned at the August conference that there are several others in the pipeline that are being investigated. You never know before the trial is completed whether it will work or not, or how good it will be. But it's not as though there is nothing coming.

So there are two avenues: the pharmacological avenue, on the one hand, and the stem cell avenue. Splendid work on stem cells is done here in Canada by Sam Weiss at the University of Alberta.

[Colin Carrie, Conservative, Oshawa, ON]

I remember that in anatomy class we did a lot of work on the venous system, especially at the base of the skull and the upper part of the spine. What I was told was that there was a lot of “normal variance”. I look around this room, and if everyone in this room had these tests....

What's the difference between a normal variant and an abnormality? Do you know?

[Dr. Alain Beaudet]

That's one of the huge issues.

There are two problems. We didn't worry a lot about the variation in the anatomy of neck veins until this happened. That's one thing. And why didn't we worry? It was because there is a huge redundancy in the number of veins and capacity for drainage, and it's normal. The veins have to be able to drain whether you're sitting, whether you're upside down, or whether you're standing. So the neck vein system has often been referred to as the “delta of the Nile”. You can block a number of rivulets, but in the end it drains perfectly. And that's one of the big issues.

So even if there are a number of anatomical differences in patients, we'll have to ensure (a) that these differences are truly, systematically, more numerous than in controls, and (b) that they truly impair drainage. That's why some of the techniques that are going to be used in these seven studies that I keep referring to should give us some information regarding blood flow and the anatomy.

There are also two groups that are doing post-mortem studies on patients to look at the vein anatomy in much greater detail than we've done so far. They will do this by moulding, by injecting silicone into the venous system, by being able to make very accurate measurements. They will be comparing--I can't say healthy controls because it's post-mortem, but comparing normal individuals with people who died from MS.

[Colin Carrie, Conservative, Oshawa, ON]

You mentioned the process you've put in place. Actually, it sounds very impressive. You mentioned how you're getting the researchers together, and you said, “They've learned, they've shared, and they've revealed.”

I was wondering, with this new process, this unprecedented research process, how is it going to benefit the MS research community and MS patients?

[Dr. Alain Beaudet]

It's certainly going to benefit patients. The work is going to go faster as they benefit from one another's experience. I would say that it's a microcosm of what's going on more and more in science. There is always a mix of collaboration and competition, but there is more collaboration as we realize that we're dealing with complex issues, and that we are way better equipped to deal with them if we work together instead of against each other.

[The Chair, Conservative, Joy Smith]

I'm sorry, we will have to end it there.

Dr. Beaudet, I have to say that it's an honour to have you here on our committee.

[Dr. Alain Beaudet]

Thank you very much.

[The Chair, Conservative, Joy Smith]

You know what struck me? It's that the very important work of the subcommittee has brought awareness and is bringing some very good dialogue. It's great to see the different countries doing different studies. Because this is a collaborative medical community or a scientific community, we can actually get the answers that we want rather than the political debates about it.

I think that's what's so important, and I think that's what this committee wants. There are very good questions this morning.

With that, I'm going to suspend for two minutes, and then we'll go into our next segment, which is with the Alzheimer Society.

[Dr. Alain Beaudet]

Thank you, Madam Chair.

[The Chair, Conservative, Joy Smith]

Could I ask everyone to please take their places?

Some people are not quite here yet. Sometimes security is a little difficult downstairs, so we might have some people joining us. However, if we don't begin, we won't get through our agenda. So we need to make the decision to begin and get everything on the record.

This is the Alzheimer Society of Canada. We have with us Deborah Benczkowski, the interim chief executive officer. Welcome, Deborah. And Dr. Jack Diamond is the scientific director. He will be here.

[A voice]

He's here.

[The Chair, Conservative, Joy Smith]

I was calling you, Dr. Diamond. I'm so glad you arrived.

You know what? I taught school for about 23 years--junior high--and I always made it a point to note the people who.... I'm just teasing you.

[Dr. Jack Diamond, Scientific Director, Alzheimer Society of Canada]

I went to the ladies' washroom by mistake.

[Voices]

Oh, oh!

[The Chair, Conservative, Joy Smith]

That's more information than I need to know, Dr. Diamond.

However, we're really glad you're here. Here I was blaming security for not letting you through.

We also have Jim Mann, member of the board of directors for the Alzheimer Society of Canada. Welcome. I understand we're awaiting Dr. Robert Lester, who will be here in a timely manner.

We have Neurological Health Charities Canada, with Shannon MacDonald, director of policy and partnerships. Welcome. We're very glad you're here today.

We're going to begin with our five- to ten-minute presentations. I'm going to be a little lax on the time, but I will not let you over 10 minutes because we'll run out of time.

We'll start with Deborah Benczkowski. Thank you.

[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.

Thank you.

[The Chair, Conservative, Joy Smith]

Thank you so much.

We'll go to Dr. Jack Diamond.

[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.

[The Chair, Conservative, Joy Smith]

So you'll leave us with that thought, Dr. Diamond.

[Dr. Jack Diamond]

Yes.

[The Chair, Conservative, Joy Smith]

That's a rather profound thought. Thank you.

By the way, Dr. Diamond, I said so because it was just a delightful way you described it. You really walked us through the brain in a way that we could all understand and relate to. So thank you. It gives us a clear understanding of what's going on, and we appreciate that.

Now, we'll go to Mr. Jim Mann, a member of the board of directors.

[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.

[The Chair, Conservative, Joy Smith]

Thank you very much, Mr. Mann. Indeed, it is a very teachable moment. I'm wondering how many people experience these kinds of situations and aren't courageous enough or brave enough to take the steps that you take to take control of your future. I think what you've said here at this committee is of paramount importance to all of us, because you never know which one of us will be the next person to have those kinds of experiences. Thank you.

Now we'll go on to Dr. Robert Lester, please.

[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.

[The Chair, Conservative, Joy Smith]

Thank you very much for coming today, Dr. Lester, because that was a very profound presentation, a very real-world presentation that many people, unfortunately, have experienced. It was very direct and truthful. So thank you so much. I appreciate that.

We'll now go to Shannon MacDonald, director of policy and partnerships for Neurological Health Charities of Canada.