Bill C-233 (Historical)

National Strategy for Alzheimer's Disease and Other Dementias Act

An Act respecting a national strategy for Alzheimer’s disease and other dementias

This enactment provides for the development and implementation of a national strategy for the health care of persons afflicted with Alzheimer’s disease and other forms of dementia.

[Rachel Blaney, NDP, North Island—Powell River, BC]

First, I want to thank you all so much for your amazing work. A special thank you to those of you who are in B.C. I am a B.C. MP, and I know exactly what time it is there, so I thank you so much for being here with us so early in the morning.

I want to first mention that in 2012, former NDP MP Gravelle introduced Bill C-356, a national dementia strategy, in Parliament. Unfortunately, his bill was defeated in May of 2015 by a single vote. It was a vote of 140 to 139. I think it was a really sad day for many of us. The Canadian Medical Association called this defeat “a lost opportunity to make lasting progress in the serious and growing problem of dementia in Canada”. The bill was opposed by a majority of Conservative MPs, including the member for Niagara Falls, who is the sponsor of today's bill, Bill C-233.

New Democrats, we will support Bill C-233, but it is less ambitious in its scope and implementation provisions than the former Bill C-356. Some of the concerns we have are around the establishment of the advisory board. In Bill C-233 there's a statement that says: “The board is to advise the Minister on any matter related to the health care of persons living with Alzheimer’s disease or other forms of dementia.” But unlike Bill C-356, the legislation offers no remuneration for the work of the advisory board members, nor any reimbursement for travel costs.

I come from a very rural riding, and I understand that the experiences of people across the country are very different. In your view, could this impact the formation and work of a national advisory board?

[Dr. David Henderson, President, Canadian Society of Palliative Care Physicians]

Thank you very much, Mr. Casey, honourable members, and guests.

It's with great pleasure that I'm here to speak on this, because not only am I the president of the Canadian Society of Palliative Care Physicians but I am also the son of a lovely lady with dementia. It's very timely for me to come and speak on this.

Today we have several members here who will be speaking about personal experiences and such, so I'll keep my comments to the palliative care aspect of this issue.

Our society is made up of around 500 physicians from across the country, and that includes regional leaders in palliative care, residency directors, clinicians, educators, and family physicians with a special interest in palliative care. Our society is proud to say that we support Bill C-233. I'm going to start off by giving you a few of our key messages that we want to get across.

Alzheimer's disease and other dementias are a tremendous challenge for many Canadians and their families. The needs of caring for someone with dementia are many. A national strategy clearly identifying and developing mechanisms to help Canadians manage the needs is essential, given the expected increase in the diagnosis with our aging population. Clear direction, goals, and funding for further research is imperative. Education on prevention needs to be expanded, and education on a palliative approach to care for dementia patients and families needs to be enhanced.

As we've just heard, Canada has an aging population, with one in six people having reached their 65th birthday by July 2015. That number is going to exponentially increase over the next few years. By 2024 the number of people over 65 will be more than 20% of our population. Again, as we've heard, the number of people up to age 14 is less and less. What that's telling us is that the baby boomers are climbing, we have an exponential rise in people over 65, and we don't have the same number of youth, coming up behind, to become caregivers. That will be quite an added load for everybody to be carrying.

As we've heard, dementia is a progressive deterioration of memory, reasoning, communication, orientation, judgment, and abstract thinking capacities, leading to the loss of ability to perform independent activities of daily living and eventually all activities of daily living. These are life-limiting conditions, and there are no curative treatments. Only about a third of people get a formal diagnosis. Changes in behaviours and emotions are common reasons for placement in residential care. Often these people receive very poor end-of-life care.

There are several dementia subtypes. Alzheimer's disease makes up about 47%. You can have a mix of Alzheimer's disease with other types of dementias, accounting for about 27%. There are vascular dementias, fronto-temporal dementias. With Parkinson's, you can get a Lewy body dementia. These all carry different sequelae with their symptoms.

The illness trajectory can often be long, with great disability along the way compared with that of other life-limiting conditions. From a physician point of view and from a health care point of view, communication with the person and their family early on is essential to determine their values, wishes, and goals. Within palliative care education, we spend time teaching approaches to having these conversations with primary care physicians, home care nurses, long-term care nurses and physicians, PSWs or personal support workers, and social workers.

Recently we had a wonderful education tool developed through Pallium Canada. There is education material we've been using for palliative care called “LEAP”, or learning essential approaches to palliative and end-of-life care. They recently developed “LEAP long-term care”. We were part of a pilot project with them, this being a country of pilot projects. It's amazing, even for someone who's been working in palliative care for a number of years, to look at the difference between what we're teaching for an adult and youth population versus what we're talking about for a more geriatric population. There are significant differences. You don't tend to see cancer near as much in that elderly population, basically because they have outlived the time when they are most likely to develop some of the cancers. Much more often, you're seeing multiple comorbidities such as heart disease, lung disease, and certainly cognitive diseases with dementias.

It is a wonderful nationally recognized and nationally accepted education tool. The key is to get that education out there so more practitioners and health care providers get that education. It's also multidisciplinary. This isn't something that just physicians need to be dealing with—we need our social workers, our pharmacists, our nursing staff, our PSWs, who make up much of the workforce in long-term care, to truly understand how to manage these conditions.

With palliative care in general, we're talking about a health-discipline focus on improving quality of life for people living with serious life-threatening illnesses. We have something now we've developed nationally, called the palliative approach to care. We will never have enough specialty palliative care teams to be able to care for everyone who needs access to palliative care, and nor should we. A palliative approach is really coming back to the grassroots and ensuring that we educate up our home care nurses, our family doctors, our nurse practitioners, and also our specialists, even within gerontology, to help ensure they have good palliative care knowledge and skills to be able to translate that care to the community and the home. Our cardiologists, our nephrologists, our oncologists all need to have these skills.

Grief and bereavement is something I want to make sure we bring up with too. It was alluded to earlier. As you can all imagine, if you get a diagnosis of cancer, that's a pretty shocking thing to hear. Most people will automatically think they're going to die, and you start on that trajectory and you may or may not. We don't often get told of a diagnosis of dementia until quite far into the diagnosis. So the person sometimes has a harder time understanding and coping with it.

You can only imagine what somebody goes through with a diagnosis of dementia. We all forget where we put our keys sometimes, but sometimes we start to recognize that this is getting worse and worse as time goes on. You go through repetitive losses with that. You're starting anticipatory grief earlier on, starting to recognize that you've experienced this, especially more and more now that perhaps you've seen somebody else in your family, a grandmother or great-grandmother, go through this. So you kind of know what to expect. That can be pretty devastating.

In my family, we are scattered across the country. I have sisters living in British Columbia, Alberta, and New Brunswick, and I'm in Nova Scotia. Families are more typically scattered now, and often lack the family support required to care for people. So now you often end up with a single caregiver, who is often elderly as well, often with comorbidities of their own, other health issues, trying to care for somebody with dementia. They're going through anticipatory grieving as well, and their entire lives end up being changed. There's much that needs to be done to help support these people.

I also want to point out that men who lose their wives, whether through cancer or dementia, are at a much higher risk of suicide. It's often not recognized that way. Our health system isn't necessarily responsive to that and doesn't always recognize it. It is a population to which we have to give a little extra care and do good risk assessment for bereavement.

To conclude—to take Mr. Trudeau's comments—we're palliative care and we're here to help. Our society is committed to help support Canadians with life-limiting illnesses, especially with Alzheimer's and dementia. We're happy to be part of any strategy that moves forward to try help develop a good system for Canada.

Thank you.

[Mimi Lowi-Young]

Thank you very much, Dale.

I come to this committee as a former CEO of the Alzheimer Society of Canada and the author of the “Canadian Alzheimer's Disease and Dementia Partnership” and the national strategy and action plan submitted to the government about four years ago now. I've also held positions as a regional health authority CEO, and I've worked in probably every segment of the health system, including acute care, rehab, and long-term care. I was also recently appointed to the institute's advisory board of CIHR as a member of the institute on chronic disease. My work will continue in an effort to help people with dementia and their families.

My mother also suffered from vascular dementia, but in those days it was identified as senile dementia. She suffered for many years, and she died spending the last month of her life in the ICU with a breathing tube.

Ladies and gentlemen, the time has come that Canada moves from writing reports, number-crunching, and vague statements about a national dementia strategy. There is a need now to make a firm commitment to a national dementia strategy and action plan, including a pan-Canadian, non-partisan entity, the Canadian Alzheimer's disease and dementia partnership, with a commitment of funding of $30 million per year, which is just less than a dollar per Canadian per year, to invest in research and knowledge translation; prevention; and living well with the disease. These are the three critical pillars of a national dementia strategy and action plan.

Let me set the context for the specifics, which should be articulated in Bill C-233, that will lead to action by the Government of Canada and the jurisdictions who have the responsibility of delivering health care services in accordance with the BNA Act and the Canada Health Act.

I would be remiss if I didn't acknowledge the outstanding and comprehensive report issued by the Senate Standing Committee on Social Affairs, Science and Technology on Tuesday of this week, chaired by the Honourable Kelvin Ogilvy and the deputy chair, Honourable Art Eggleton, P.C. This report speaks to the urgency for action and the areas of focus for the Canadian Alzheimer's disease and dementia partnership and a national dementia strategy and action plan, which I will cover in some detail shortly.

Please indulge me to give you a few numbers, even though I just said we shouldn't be number-crunching anymore.

In Canada, dementia has touched over half a million people with the disease, and it has touched many more. The number of people with dementia will double in less than 20 years. Unpaid caregivers, families, and friends involved in the care and support of individuals with dementia are also directly impacted. They are touched in so many ways by this disease, which is progressive. We have no cure or disease-modifying therapy to avert or curtail the disease.

Women are most affected by the disease, both by having the disease, at 65%, and being the primary caregiver, at 72%. Over 65% of individuals currently residing in long-term care homes have some form of dementia. A number of them could and should be being cared for in the community if there were adequate services in home and community services. Our emergency wards care for many individuals with dementia, as there are few services to deal with the many challenges of this progressive disease.

Overall, this disease has significant impact on the social and economic fabric of this country at a cost of $10.4 billion per year. This number will double in the next few years as the population ages. We have more people over the age of 65 than under the age of 14.

Another cruel reality of dementia is the stigma related to the disease. Individuals with the disease become terribly isolated from their friends and family, which leads to further deterioration of their condition. As well, physicians are reluctant to provide an individual the diagnosis of dementia, as they know they have no treatment or cure to offer.

In Canada we have research initiatives and we have programs and services available to individuals with dementia and their families, but the amount of research is very limited. Only 5% of CIHR funding goes towards dementia. The number of such programs and services is also very limited, and access depends on where the individual lives. There is poor and inconsistent coordination of care and services among health care providers in different parts of the health system. Evidence from research and best practices are inconsistently implemented, or not implemented at all: Canada is known as “pilotville”.

Is there a solution to this compelling national public health priority? Ladies and gentlemen, the answer is, yes, of course.

We need the commitment from Parliament that a national dementia strategy and action plan will be established with oversight provided by a newly established Canadian Alzheimer's disease and dementia partnership.

What are the components of a strategy and action plan? There is a desperate need to increase the investment in research. As well, the Canadian Alzheimer's disease and dementia partnership could and will bring together researchers and institutions to reduce duplication, promote sharing of information, and determine effective knowledge translation and exchange strategies, which means using evidence to improve practice and care and delivery by practitioners. Efforts to encourage innovation, investment, and drug discovery is really important.

In the area of prevention, the second pillar, the government should complete the implementation of the surveillance system for dementia by the Public Health Agency of Canada. The government should set targets for health practitioners to achieve with regard to early and improved diagnosis of the disease. The government should actively promote the evidence-based actions Canadians can partake in to reduce the risks, such as exercise, diet, blood pressure control, and the elimination of smoking, just to name a few.

The last pillar is living well with the disease. Ongoing support of Dementia Friends, with an emphasis on developing dementia-friendly communities, will assist in reducing the stigma of the disease and will improve public awareness. In an effort to maintain the independence of persons with dementia for as long as possible, the Alzheimer Society's First Link program, which is a referral program, should be standard in every community in the country.

Improved access to home and community services provided by health care providers who are trained in the delivery of care for individuals with dementia is critical. The federal government should continue to pursue efforts to support unpaid caregivers through employment insurance reform initiatives.

Finally, to prepare for the rising tide of dementia, the amount of ongoing training and education of health professionals in geriatric medicine and care must be improved and increased as soon as possible.

There is truly a window of opportunity for this government and the Parliament of Canada to provide the necessary leadership to implement a national dementia strategy and action plan for the following reasons. The conditions are right and ripe.

First of all, there's a commitment by this government to add $3 billion for home and community care, including palliative care. There is the ability to negotiate a new health accord.

There is the desire by Canadians to have a national dementia strategy. Eighty-three per cent have told us that they want one.

The Council of the Federation has identified dementia as a key priority for its health committee. Many provinces are creating provincial dementia plans, and some have already implemented them.

People with the disease and their families have growing needs and a desire to be directly involved in decision-making and policy development.

There is a rising tide of aging and dementia in Canada.

Let me conclude with a short story about Mr. and Mrs. G. Mr. G was a very successful restauranteur, and his wife worked in a hairdresser's shop serving many customers for 30 years. Mr. G had a stroke three years ago, with limited physical deficits, and Mrs. G retired two years ago.

Mrs. G needed a haircut but delayed having one for nearly a year, as she forgot about the appointments and kept calling to make the same appointment over and over again for her and Mr. G. As a result of the stroke, Mr. G now has vascular dementia. Their daughter lives with them at home but travels extensively. Mr. G still drives and Mrs. G still cooks. They're both emaciated and probably don't eat or cook very much anymore.

This situation can turn into a major disaster. Is there no safety net for a situation like this? How many more Mr. and Mrs. Gs are there in Canada?

For my final comment, I would like to quote Margaret Chan, Director-General of the World Health Organization, who captures the essence of the dementia crisis. She said:

I can think of no other disease that has such a profound effect on loss of function, loss of independence, and the need for care. I can think of no other disease so deeply dreaded by anyone who wants to age gracefully and with dignity. I can think of no other disease that places such a heavy burden on families, communities, and society. I can think of no other disease where innovation, including breakthrough discoveries to develop a cure, is so needed.

Mr. Chairman and members of HESA, please ensure that any modifications to Bill C-233 will only strengthen what Canada needs, a national dementia strategy and action plan, and the Canadian Alzheimer’s disease and dementia partnership. No more studies. No more number-crunching. We need action now.

Thank you for giving me the opportunity to present my perspective. I am committed to seeing Canada implement the strategy and plan so that Canadians with dementia and their families now and into the future will know that they can depend on their country for care and support.

Thank you very much.

[Dale Goldhawk, Vice-Chairman, Alzheimer's Disease International]

Good morning, Mr. Chair, honourable members, ladies and gentlemen.

Alzheimer's disease killed my father. The unrelenting emotional and physical stress also led to the death of my mother. That was 30 years ago, when we knew very little about this disease.

Dr. Alois Alzheimer first studied it in 1901, 115 years ago, and still there's no effective treatment, let alone a cure. I think that underlines the vital importance now of the passage of Bill C-233, and, following that passage, meaningful funding to help people whose lives are being profoundly affected by the heartbreak of dementia.

Just three years ago, there were only 13 countries in the world with dementia strategies. Now we have 28. I can say that after years of inaction and little progress, enthusiasm, optimism, and real action appear to be at hand. For one thing, the World Health Organization at its assembly in May of next year hopes to pass a global plan of action on dementia. It has a very blunt message: governments must implement national plans to fight dementia, take action, and do it now.

Alzheimer's Disease International research says that every three seconds, a new case of dementia is recorded in the world. Momentum, of course, is building in Canada. It begins with the passage of Bill C-233, which we need, and the Senate report on dementia released yesterday, which we also need, to help build that forward motion to chart a course of action behind the bill.

I know of no one better equipped to talk about that course of action than my colleague Mimi Lowi-Young. She has worked hard formulating that action for several years now.

Mimi.

[Mimi Lowi-Young, Former Chief Executive Officer of the Alzheimer Society of Canada and Health Care Executive, As an Individual]

Good morning to the chair, Mr. Casey, to the two vice-chairs, Mr. Webber and Mr. Davies, and to the members of the Standing Committee on Health.

I'm Mimi Lowi-Young, and I'm very honoured to be a witness for this committee's examination of Bill C-233, an act respecting a national strategy for Alzheimer’s disease and other dementias.

Presenting with me today is Mr. Dale Goldhawk in his capacity as vice-chair of Alzheimer's Disease International. Mr. Goldhawk is a veteran journalist and broadcaster. For the past 20 years, he has been an Alzheimer's volunteer and a former president of the Alzheimer Society of Canada.

[The Chair, Liberal, Bill Casey]

Okay. So that's all right with you.

It was moving testimony. I know I certainly felt the emotion in the words from the presenters. It was hard to miss how urgent the situation is.

So I will add those comments when I table the report.

This morning we're having our first meeting on Bill C-233, An Act respecting a national strategy for Alzheimer’s disease and other dementias

To our guests this morning, welcome. We look forward to your testimony.

We have Mimi Lowi-Young, who I understand is working with Dale Goldhawk, the vice-chair of Alzheimer's Disease International; from the Canadian Society of Palliative Care Physicians, Dr. David Henderson, who's from Truro; and from the Council of Senior Citizens Organizations of British Columbia, by video, Kathleen Jamieson, chairperson, and Sheila Pither, treasurer.

We welcome you all to our committee.

I understand we'll start with you, Mimi Lowi-Young, and you're going to share your time with Mr. Goldhawk. You have 10 minutes. Thank you.

[John Oliver, Liberal, Oakville, ON]

Mr. Chair, I move:

That the Committee dedicate the meetings of Thursday, November 17, Thursday, November 24, Tuesday, November 29 and December 1, 2016, to study Bill C-233, An Act respecting a national strategy for Alzheimer’s disease and other dementias.

(Motion agreed to)

[Colin Carrie, Conservative, Oshawa, ON]

I am going to agree with my colleagues. There are many things on the table that are extremely important, but perhaps the analyst can get back to us with potential witnesses for Bill C-233 because we might be able to get the whole thing done in two meetings. I think we are all in agreement on moving forward on that.

[John Oliver, Liberal, Oakville, ON]

I think Bill C-233 is a very important bill that we should give full time and attention to as a committee. We need to make sure we get it onto our work plan. It seems to enjoy the support of many people in all parties in the House.

I would like to recommend that we dedicate at least two meetings, if required, to hear witnesses. November 17 and 24, Thursdays, would be dedicated to Bill C-233 for witnesses, if required, and we would do our clause-by-clause study on either November 29 or December 1. We've only done one bill to date, so I don't know how much time is required between witnesses before we do the line-by-line consideration, and whether there's any work to be done by the analysts after the witnesses do their piece. If there's no time required for the analysts, then I suggest we do the line-by-line consideration on November 29. If time is required, then I suggest we target December 1 for the clause-by-clause review.

My understanding is that we need to have our work completed by December 8 or the bill will go back to the House unamended.

[Debbie Benczkowski]

First of all, I think we should talk about the financial investment we're requesting the government to make. It's $30 million a year over five years. That is really less than $1 per Canadian, per year, for a disease that's already costing well over $1,000. So it's a modest investment.

We already have Bill C-233, which is a private member's bill, as you know. It's been through second reading and it's at the health committee right now. It's really for direction to Canada to have a strategy on Alzheimer's disease and dementia. The money that is being requested is to establish the Canadian Alzheimer's disease and dementia partnership, which is a suggestion to the government on how we develop a strategy. Thirty countries around the world already have dementia strategies in place. All the G7 countries except for Canada and Germany have dementia strategies in place. We have taken the best of all of those strategies, which are now being evaluated at an international level. The World Health Organization has also called on all member countries to really make sure that countries address the rising tide of dementia and the increased numbers of people who will be affected.

As I said, there are three areas of investment that we're looking at. There's research. There's prevention, with early diagnosis and early intervention, making sure that people get an accurate diagnosis so that they can avail themselves of the proper care and support they need. Then there are the medical and clinical interventions that will help them to lead a better quality of life.

We feel we've addressed the jurisdictional issues between the federal government and the provinces, because all of the areas we've suggested to be part of the partnership are within the jurisdiction of the federal government. One of those key areas is that we develop plans and then make sure that indigenous communities have access to culturally specific and appropriate care and services across Canada.

[Debbie Benczkowski, Chief Operating Officer, Alzheimer Society of Canada]

Good morning, Mr. Chair. On behalf of the Alzheimer Society of Canada, let me thank you all for the opportunity to appear before you and the members of this committee today.

We did submit a pre-budget submission. We recommended that the government invest $150 million over five years for the creation of a Canadian Alzheimer's disease and dementia partnership to support the implementation of a national dementia strategy for Canada. I have a copy of our partnership document here that we can make available to all of you. Today I'd like to talk a little bit about how the CADDP, or what we call the partnership, and the national dementia strategy would help Canadians living with this disease as well as their caregivers.

Dementia is a chronic, progressive health condition, and it has no cure. Today 564,000 Canadians live with dementia, and we expect this number to rise to 937,000 by 2031. This is an increase of 66% in just 15 years. Some of you seated around the table may know someone or may be related to someone who has dementia. In fact, three out of four Canadians do. I lost my own mother to dementia just this past July.

Dementia's growing numbers are further complicated by soaring costs. According to the national population health study of neurological conditions, which was funded by the Public Health Agency of Canada, in 2016 our economy is spending $10.4 billion on health care and caregiver costs. By 2031 this figure is expected to increase by 60% to $16.6 billion. These numbers are too big to ignore. Nor can we ignore the people behind these numbers who struggle to cope with the malicious effects of this disease each and every day. Women are especially affected. They represent 60% of Canadians with dementia and 70% of caregivers.

Caregiving is another aspect of dementia that we can't afford to ignore. In 2011 alone, family caregivers provided a staggering 19.2 million unpaid hours of care, which is expected to double by 2031. The amount of time and stress involved with caregiving can result in losses in productivity for our economy, including lost work days and underperformance on the job, losses that our economy and my co-presenters who are here today can't afford to ignore. Worse yet, it forces many caregivers to have to leave their jobs.

Clearly we're facing a challenge, but there are solutions. We welcome the recent action by Minister Duclos to seek the views of Canadians on providing a more inclusive caregiving benefit for those who provide care to a family member. Even the smallest level of financial assistance will allow family caregivers to remain employed and in the workforce for longer.

A change in policy will reduce the number of lost work days and boost our GDP. While this is a small but positive step, dementia requires bold action. It requires a comprehensive approach. The best thing we can do for Canadians and their families is to adopt a national dementia strategy, and that's why the Alzheimer Society has proposed a Canadian Alzheimer's disease and dementia partnership to guide the development and implementation of a national strategy. It would involve multiple stakeholders working together and a public health approach.

A pan-Canadian dementia strategy would ensure that all Canadians with dementia and their caregivers will have access to the same level and quality of care and services no matter where they live. This strategy would be based on a number of priorities and objectives that clearly fall within the federal government's mandate. It would ensure tangible benefits for people affected by dementia.

We have three priorities for a national strategy. These include investing more in scientific and medical research and innovation; prevention, early detection, and early intervention; and living well with dementia—ensuring people with dementia and their caregivers can live as well as possible as they progress through this disease.

We are running against the clock. Each year, 25,000 Canadians are diagnosed with dementia.

I firmly believe that solutions are within reach and that we can make a difference for hundreds of thousands of Canadians. On behalf of the Alzheimer Society, I ask you first to commit to an investment of $150 million over five years to create a Canadian Alzheimer's disease and dementia partnership. Second, I ask you to support private member's Bill C-233, an act respecting a national strategy for Alzheimer’s disease and other dementias, when it returns to the House—shortly, I hope—for third reading.

Mr. Chair and committee members, thank you so much for your time. I'd be pleased to answer any questions you may have.

National Strategy for Alzheimer's Disease and Other Dementias Act

[Cheryl Hardcastle, NDP, Windsor—Tecumseh, ON]

Mr. Speaker, I am pleased to speak today to Bill C-233, an act respecting a national strategy for Alzheimer’s disease and other dementias.

The New Democrats believe that a national strategy for dementia is long overdue. In fact, one should already be in place, and would be, had the current sponsor of this bill, the member for Niagara Falls, and his party not voted down a similar yet more comprehensive NDP bill that was tabled in the previous Parliament.

Dementia disease is a progressive degenerative disorder that attacks nerve cells in the brain, resulting in loss of memory, thinking, language skills, and behavioural changes. The disease forms lesions in the brain cells of patients, causing nerve connections to sever and nerve cells to die.

Alzheimer's is the most common form of dementia, which is a general term used to describe a group of systems, such as loss of memory, language, motor skills, and other brain functions. Alzheimer's is not part of the normal process of aging, and currently has no cure.

The New Democrats ardently support the need for national leadership to develop and implement a comprehensive strategy across Canada to address Alzheimer's and other dementias. Our caucus unanimously supported former NDP MP Claude Gravelle's bill in May 2015 to create a national dementia strategy. Further, in election 2015, the NDP committed $40 million toward the implementation of a national Alzheimer's and dementia strategy.

Our party recognizes the crisis facing Canadian health care as our country's population ages, including the growing prevalence of dementia among the elderly. We believe immediate action must be taken to tackle these serious challenges on a comprehensive basis. Accordingly the New Democrats are concerned by the decision of the Liberal government to abandon its home care promise in budget 2016. By abandoning the necessary investments now, the Liberal government will only further exacerbate the costs and suffering down the line .

A national strategy for Alzheimer's and other forms of dementia must include mechanisms to ensure that staff have the necessary knowledge about the disease and the skills to deal with it. This means that people have to share information. The purpose of a national strategy is to share that information. People should not be working in isolation.

We have to find a way to ensure that everything we learn, everything that might be useful, such as best practices, is communicated to people struggling with the same problems. It is essential for people to have ways to talk to each other. The goal is not to step in for the provinces, but to ensure that communication channels remain open and people work together. Real collaboration needs to happen so people can share best practices. We have to ensure that nursing staff, doctors and other professionals, such as police and emergency responders, know and understand how to deal with dementia. They need to have the right skills and knowledge to work with people with dementia and provide them with quality care that is appropriate for their situation.

They are often forgotten, but the volunteers who work in this field need to be able to understand the reality of a person living with dementia. It is not always an easy thing to do. There are certain situations that are very difficult to go through on a daily basis, and it is hard to know how to intervene. The volunteers who work at these centres must have access to the knowledge and skills they need to properly understand the reality of the field they have chosen to work in.

As far as research is concerned, we have extraordinary Canadian researchers. However, we could also form international partnerships to further our knowledge. In my opinion, the quality of daily life for people with dementia is an essential area of research. Lately, a lot of research has been done on daily life, and we have learned how significant and deeply impactful this research can be.

In many places there has been a shift from a very medically-based approach to one focusing on the daily experience of dementia sufferers. The goal is for the transfer to long-term care to go as smoothly as possible. For that to happen, the person with dementia needs to be able to create reference points.

A lot of advances have been made because of these various approaches that focus on quality of life and ways of providing care and intervention. Not only is this helping those living with dementia to live much more happily, it is enabling families to be an integral part of the care process.

There is a lot to do. With the challenges this will present in the coming years, it is essential to share information in order for us to adopt an effective national strategy for dementia. According to the Alzheimer Society of Canada, as we heard earlier tonight, the disease and other dementias now directly affect 747,000 Canadian patients, and this number is expected to double to 1.4 million by 2031. Current dementia-related costs, both medical and indirect lost earnings, of $33 billion per year are expected to soar to $293 billion by 2040.

Sadly, the burden of caring for patients with dementia and Alzheimer's falls primarily on family members. In Canada, family caregivers spend 444 million unpaid hours per year caring for dementia patients, representing $11 billion in lost income and 227,760 lost full-time equivalent employees in the workforce. Providing millions of hours of unpaid caregiving has forced people to cut back or leave work altogether, which harms them and our economy. I want to talk about that this afternoon.

I learned from the Canadian Medical Association that 15% of scarce acute care beds are occupied by people who could be placed elsewhere, and half of them are dementia patients. Beyond those statistics, I have learned the real face of the problem. The real face of dementia is not just older people. I learned that 15% of dementia patients are under 60 years of age. I learned that we have a health care crisis and a social and economic crisis that we must address.

This is therefore an issue that cries out for leadership from Ottawa, working with the provinces and territories, which of course, have primary jurisdiction duties for health care delivery. I want the leadership from Ottawa to tackle five main elements: early diagnosis and prevention; research; a continuum of care for people and families in the home, the community, and institutions; real help for caregivers; and training for the dementia workforce.

Alzheimer's disease puts enormous emotional stress on millions of families in Canada and costs our health care system billions of dollars every year. Delaying the onset of Alzheimer's by two years could save our health care system $219 billion over a 30-year period. A national strategy for dementia may be able to make an astounding difference in advancing research to work toward achieving this goal, which would diminish this enormous economic hardship and subsequently, and most importantly, improve the lives of those affected Canadians.

The challenge caregivers face needs to be discussed. Over the years, I have known people who have been forced to take a leave of absence without pay to take care of a loved one suffering from dementia, sometimes for several years. In such situations, money gets tighter as families try to keep their loved ones in their homes for as long as possible. They often have to draw on savings that were meant for their own later years.

Canada needs a national strategy for dementia that comes from Ottawa but one that respects provincial and territorial jurisdiction over health. One strategy tailored to the needs of each province or territory would be far better than 13 separate strategies implemented in isolation. We want a national strategy that goes beyond research to also help those now living with the disease, their caregivers, and the dementia workforce.

[Mark Warawa, Conservative, Langley—Aldergrove, BC]

Mr. Speaker, it is a real honour to be here as official opposition critic for seniors and to speak to Bill C-233, the national strategy on Alzheimer's disease and other dementias.

I would like to begin by thanking, particularly, the member for Niagara Falls for introducing this important bill. The secret to the success of the bill moving forward is his non-partisan approach. This is not an NDP, Liberal government, nor an official opposition Conservative Party issue, it is a Canadian issue on which we need to work together as parliamentarians. It is moving forward because of his non-partisan approach and I congratulate the member for Niagara Falls. He is a well-respected member in this House.

Bill C-233 provides for the development and implementation of a national strategy for the health care of persons affected with Alzheimer's disease and other forms of dementia.

Just to divert for a moment, my understanding of what my NDP colleague said was that people with dementia, with Alzheimer's disease, deserve to have assisted suicide. I hope that is not what she meant because people with dementia already feel bad and they may feel stigmatized.

They realize that their brain is getting a little fuzzy and they are forgetting. It is frustrating for them and maybe even a little bit embarrassing. We would not want them to think people expect them to take the obvious choice, and we heard that from Dying With Dignity, saying that it would be sensible for persons with dementia, lying in bed in the last years of their life with an adult diaper, to ask for assisted suicide.

That would not work in Canada. It is not dignified to expect people to leave this world because they are in a state of dementia. We need to show them dignity, show them love and support, and only in the most extreme cases should assisted suicide be considered.

When someone's pain is intolerable, irremediable, that is what the court said, and in extreme cases, but assisted suicide and euthanasia should not be considered the norm because it is a horrible loss when someone finds themselves in that situation. We should never put this on to people who are suffering with dementia through Alzheimer's disease or any other dementia disease.

As the seniors critic, I have met with the Alzheimer's Society and many other seniors organizations which are very supportive of this bill. Mimi Lowi-Young, the CEO of the Alzheimer Society of Canada had this to say about Bill C-233:

We’re thrilled that parties are working together so soon after the election to address the urgency of dementia. We all need to get behind this bill. We strongly believe that a national dementia strategy that focuses on research, prevention and improved care is the only solution to tackling the devastating impact of this disease. We’re ready to collaborate with our federal, provincial and territorial partners to make this a reality.

I am really thankful to her and the Alzheimer Society of Canada for supporting Bill C-233. According to the research done by the society, 83% of Canadians have said that they want a national dementia strategy.

I would like to give a brief summary on the issue of dementia. Alzheimer's disease and other forms of dementia are progressive, degenerative, and eventually fatal. They impair memory, judgment, and the ability to reason, think, and process information. Changes in personality and behaviour also result from dementia.

Currently, 747,000 Canadians have some form of dementia. This number is expected to nearly double to 1.4 million in my lifetime. Three out of four Canadians, 74%, know someone who is living with dementia. As Canada's population ages, the number of Canadians diagnosed with dementia is expected to double.

Research, collaboration, and partnership remain the key to finding a cure. Early diagnosis and support for treatment can lead to positive health outcomes for people with any form of dementia. Early diagnosis also has a positive impact on the family and friends providing care for their loved ones.

The Government of Canada, in consultation with the ministers responsible for the delivery of health care services in each province and territory, should encourage the development of a national strategy for the care of people living with Alzheimer's disease or other forms of dementia.

What is dementia? Dementia is a difficult disease, but it does not define the person who has it. People with dementia are people first. They can lead happy and vital lives for a long time, especially when the right care and support and understanding is in place. Timely diagnosis is very important. It opens the door to treatment and connects people with the disease and their families with helpful resources like the Alzheimer's Society.

While there is no guarantee, Canadians can reduce their risk of dementia by eating a healthy diet, doing more physical activity, learning and trying new things, staying socially active, quitting smoking, and watching their vitals.

While dementia is not a part of growing old, age is still the biggest risk factor. After age 65, the risk doubles every five years. Seniors represent the fastest growing segment of the Canadian population. Today, one in six Canadians is a senior. In thirteen very quick years, it will be one in four. That is a major demographic shift. Dementia also occurs in people in their forties and fifties, in their most productive years.

A good question that needs to be asked, and is asked, is this. What is the impact of dementia on families and the Canadian economy? For every person with dementia, two or more family members will be providing direct care. The progression of dementia varies from person to person. In some cases it can last up to 20 years. Because of its progression, caregivers will eventually provide 24/7 care.

In 2011, family caregivers spent 444 million hours providing care, representing $11 billion of lost income and about 230,000 full-time jobs. By 2040, caregivers will be providing 1.2 billion hours of care per year.

Dementia is a costly disease, draining approximately $33 billion per year from our economy. By 2040, it will be very close to $295 billion every year.

There is a need for a strategy that includes awareness and research.

It is commonly believed that dementia is a normal part of aging, but it is not. This kind of attitude means too many Canadians are diagnosed too late, and their caregivers seek help when they are in crisis mode. The causes of dementia are still not fully understood. Nor do we have a cure for dementia. Effective treatments are lacking and there is no proven prevention. Dementia can lie dormant in the brain for up to 25 years before the symptoms appear.

Alzheimer's disease is the most common form of dementia and accounts for over two-thirds of dementia cases in Canada.

What would Bill C-233 achieve? It would achieve a national strategy. The minister or delegated officials would work with representatives of the provinces and territories to develop and implement a comprehensive national strategy to address all aspects of Alzheimer's disease and other forms of dementia. Within two years of passing the legislation, every year after that the minister must prepare a report on the effectiveness of the national strategy, setting out his or her conclusions. The national objectives need to be given priority. A report will be tabled in the House during the first days of the sitting after the report is complete.

A number of western countries have a national dementia strategy: the United States, Mexico, Argentina, Belgium, Denmark, the United Kingdom, Finland, France, Luxembourg, the Netherlands, Norway, Switzerland, Japan, Israel, South Korea, New Zealand, and Australia. It is Canada's time to have a national strategy.

I again want to thank the member for Niagara Falls for bringing this forward. Together, if we work as a Parliament, we can pass the legislation quickly. It is needed in Canada.

[Sheila Malcolmson, NDP, Nanaimo—Ladysmith, BC]

Mr. Speaker, last month, I joined my community in Nanaimo on the walk for Alzheimer's where our community walked in support of Alzheimer's patients and their families.

The honoree this year was the late Dale Horn. She was born in 1933 in Australia and she came to Canada at the age of 24. She was such a strong part of Nanaimo's community boards and the life of its community spirit.

At this Alzheimer's walk a month ago, her son, John Horn, honoured her at the walk for all the hundreds of participants ready to get started, saying: “Dale was a fantastic companion, fully engaged, witty and keenly observant. She drew you in and made you feel lucky to be included in her world.” With “a steely resolve and genuine grit,” Dale was unfazed by her disease, said John. “When affected by Alzheimer's, she insisted on helping others with the disease. She retained a wicked sense of humour and immense grace, right up to the end of her life.”

This year's Nanaimo Alzheimer's walk raised $18,000. This is to promote critical research to reduce the effects of Alzheimer's, but also to provide services for those living with, or assisting with Alzheimer's. This is really to ease the personal circumstances that exist for the people suffering and for their families every day.

It is in that spirit that I am pleased to stand and speak today in favour of the bill at hand and to speak about Canada's responsibility to improve care for the hundreds of thousands of Canadians suffering from dementia, and to give better support to their families and caregivers.

Bill C-233, which calls for the development and implementation of a national and comprehensive strategy to improve health care delivered to persons suffering from Alzheimer's and other forms of dementia is something we can and should all support. Canada has fallen behind other countries such as the United States, the U.K., Norway, France, the Netherlands, and Australia. All of these countries have coordinated national dementia plans in place already.

Past president of the Canadian Medical Association, Dr. Chris Simpson, spoke to this when he said:

We have the dubious distinction of being one of the few G8 countries without a national dementia strategy. Meanwhile, our acute care hospitals are overflowing with patients awaiting long term care placement and our long-term care facilities are understaffed, underspaced and underequipped to care for our most vulnerable seniors. This leaves patients and their families in limbo, struggling to fill these gaps in our system.

He also said:

The reason your father has to wait nine months for a hip replacement is that the beds are being used by dementia patients.... That is the single biggest reason why elective surgery wait times are so long.

Now, it was the NDP that first introduced a proposal to the House to create a national strategy for dementia. In 2012, former NDP MP Claude Gravelle introduced Bill C-356 in Parliament, prescribing a national dementia strategy. Unfortunately, that bill was defeated at second reading a year ago by a single vote. The bill was opposed by a majority of Conservative MPs, Bloc MPs, and, critically as it turned out, a single Liberal MP who failed to stand for the vote. I was watching it on CPAC. It was heartbreaking because it would have made a big difference in our communities.

Inexplicably, the member for Niagara Falls, the sponsor of the bill before the House today, voted against the national dementia strategy just a year ago. If the House had followed New Democrat leadership in the last Parliament, Canadians would have a national dementia strategy in place right now. Canadians would not have lost precious time, and that is something that is so precious to people suffering from a degenerative illness.

This has had real human impact. I have heard countless stories in my riding about the impacts of Alzheimer's disease and dementia on my constituents. Many cannot afford quality home care for their parents and it is especially shameful that the Liberals abandoned their election promise to invest $3 billion in home care.

I have heard stories from personal care workers, nurses, and physicians who report emergency wards overwhelmed with patients, long-term facilities that are understaffed, and long gruelling hours for caregivers. These are very often offering low-pay work in the homes of dementia patients.

These stories underscore the need for real leadership in this chamber. So many are affected. Three-quarters of a million Canadians were living with dementia in 2011. That is 15% of Canadian seniors. That might double by 2031. This costs our country $30 billion a year in medical bills and lost productivity. Left unchecked, that number could skyrocket to $300 billion within 25 years.

As Canada's population ages, we must prepare our health care system and our communities for the inevitable rise in the number of Canadians suffering from dementia.

To paraphrase Tommy Douglas, the father of medicare and a New Democrat, only through the practise of preventative medicine will we keep health care costs from becoming excessive.

The need is pressing. The burden for caring for patients with dementia and Alzheimer's falls primarily on family members. In Canada, family caregivers give millions of unpaid hours each year caring for their parents and family. That is $11 billion in lost income and a quarter million lost full-time equivalent employees from the workforce.

If nothing changes by 2040, it is estimated that family caregivers in Canada will be spending 1.2 billion unpaid hours per year providing care, and a quarter of family caregivers are seniors themselves.

Dementia also has a disproportionate impact on women. Women are two and a half times more likely to be providing care. Women themselves represent 62% of dementia cases and 70% of new Alzheimer's cases. That puts them at the epicentre of a growing health care crisis. Also, women are nearly twice as likely to succumb to dementia.

Another group of vulnerable patients are affected by another bill in the House, and that is the government's physician-assisted dying bill. We keep hearing arguments again and again that people with a dementia diagnosis should have a real choice over how their lives end. The federal government's legislation for assisted dying would not allow Canadians with a dementia diagnosis, while they were still of sound mind, to make an advance request for physician-assisted dying. This puts up an enormous barrier for thousands of Canadians with dementia or other degenerative illness.

Without the right to make advance requests for assisted dying, Canadians with a dementia diagnosis are faced with what the courts call a cruel choice between ending their lives prematurely or, potentially, suffering immeasurably and unbearably. This is completely unacceptable. To us it looks as if those who most need physician-assisted dying may inexplicably be excluded from it. We remain optimistic that amendments will be made to ameliorate that very serious flaw.

Let us go back to the national Alzheimer's strategy.

The New Democrats believe that the bill must be crafted correctly to ensure the best outcome for patients, their families, and their caregivers. While we support Bill C-233, it is less ambitious in its scope and implementation provisions than last year's New Democrat bill.

We will work constructively at committee stage to bring about meaningful and substantive amendments to strengthen the final version of the bill. Canadians deserve no less than the best national Alzheimer's strategy possible. The New Democrats have a long and proud history of advocating for federal leadership on health care issues.

In fact, as my colleague, the member forVancouver Kingsway likes to remind me, we invented it. The New Democrats stood alone in the House unanimously for a national dementia strategy in 2015. We stand in the House in 2016 and work so every Canadian, every Canadian family, every caregiver, can have a world-class dementia strategy, as the New Democrats have fought for in the last five years.

[Joe Peschisolido, Liberal, Steveston—Richmond East, BC]

Mr. Speaker, I too am pleased to rise today to speak in support of Bill C-233, an act respecting a national strategy for Alzheimer’s disease and other dementias.

Just like the member of Parliament for South Surrey—White Rock, I was in a similar situation. I was not the caregiver, but my parents were the caregivers to my beloved grandma, my beloved nonna. As was eloquently, passionately, and poignantly pointed out by the member for South Surrey—White Rock, there are 750,000 people suffering from all types of dementia. As the proposed act properly states, it is Alzheimer's and other forms of dementia. Our family's situation was a bit different from that of the member for South Surrey—White Rock. My parents were able to give everything up and basically they became the caregivers. I would try to get home as much as I could to see a bittersweet situation. I always referred to my grandmother as Nonna Me, because as a little boy I was unable to say her name, Domenica. I saw first-hand where my grandma became a child. My mother and father had the resources and the time to stay home. My aunts and uncles also had the time to take care of my nonna.

However, a lot of folks are not blessed. We have many situations throughout Canada of different family dynamics and situations from coast to coast to coast, and that is why I am very pleased to rise today in full support of Bill C-233.

I am also very pleased to note that this bill has bipartisan support. I listened to the eloquent and passionate presentation by my colleague from South Surrey—White Rock and also to the member of Parliament for Niagara Falls who put forth this piece of legislation; as well as to my colleague, the member of Parliament for Richmond Centre. The Parliamentary Secretary to the Minister of Health also spoke eloquently as did the co-sponsor, the member of Parliament for Don Valley West and the member of Parliament for Vancouver Kingsway.

As well, I believe the member of Parliament for Abitibi—Témiscamingue spoke eloquently about not the exact bill but a similar bill put forth by the former NDP member of Parliament, Claude Gravelle, back in 2012. While not exactly the same approach, it was a similar bill to deal with a national strategy on dementia. We need a national strategy on dementia because Canada is big.

As others have done, I will talk about the elements of the bill. After 180 days, the Minister of Health would put forth a conference, bringing experts from all the provinces and territories, from all the stakeholders and people. There would be an advisory board of no more than 15 folks from different sectors of Canadian society who would advise. As well, every two years the minister would report to Parliament on the approach and the success of the national strategy.

There are big buzz phrases such best practices and evidence-based. Ultimately, what this means is that the Parliament of Canada would work with the provinces and also with the levels of government closer to the people: the municipalities, health boards, and universities.

Kwantlen College in my riding of Steveston—Richmond East is also doing research. Yes, we need a national strategy to deal with the folks who are suffering from a horrific disease. I saw that with my nonna, my grandmother. We also have to figure it out. Dementia or Alzheimer's should not be part of the natural process of aging. It does not have to be that way. It will be tough. It will require the investment and the research. I am not a scientist but it requires research with respect to how the brain works and how everything is connected.

This strategy would do that. It is the first step, but it is a very important step. I urge all members of the House to fully support the bill.