Mr. Chair, vice-chairs, and members of the committee, it's an honour to be here today to present my private member's bill, along with my fellow colleague, the member for Don Valley West, Mr. Rob Oliphant.
Bill is an act respecting a national strategy for Alzheimer’s disease and other dementias. This bill calls upon parliamentarians to enact legislation for a national coordinated strategy for what has been termed Canada's invisible killer. Alzheimer's and dementia are major health problems that transcend partisanship and are affecting a staggering number of Canadians currently. I believe you have heard that 740,000 Canadians currently suffer from Alzheimer's, and ever more concerning is the fact that this number is expected to double in the next 20 years.
This is why I believe Canada needs to have a plan. I'm certain Mr. Oliphant will touch upon his experiences with Alzheimer's and dementia when he speaks, so I would like to take a moment to note the work on this topic by a former member of Parliament, Claude Gravelle. It's most heartening to know that in matters of concern to Canadians and their families, MPs can work together across party lines to unite and advocate for research, collaboration, and partnership, to find cures, timely diagnoses, and other support for treatment. This co-operation will lead to positive outcomes for Canadians who suffer from Alzheimer's and dementia, and will reassure their loved ones that people who are suffering from this will have the proper care. Canadians expect that their parliamentarians will work on their behalf to resolve these critical issues.
The impact on families whose loved ones are suffering from Alzheimer's or dementia is extensive. Three out of four Canadians know someone living with dementia. I can't tell you how many people have approached me over the last couple of months to tell me the stories they have experienced within their families. This not only takes an emotional, psychological, and physical toll on those who are providing support for loved ones, but it also has a severe financial effect.
In 2011, caregivers provided 444 million hours of care, representing $11 billion in lost income, and about 230,000 full-time jobs. By 2040, caregivers will be providing 1.2 billion hours of care, over two and a half times the number of hours they provide today.
Alzheimer's and dementia are no respecters of people as they rob them of their dignity, independence, memory, and time. They know no bounds and are not restricted to social or economic factors. No one is immune to these terrible diseases and the suffering that follows.
It brings to mind the late United States President Ronald Reagan. The former leader of one of the most powerful and wealthy nations on earth could not be safeguarded from the ravages of Alzheimer's. On November 5, 1994, I remember him as the 40th president of the United States, addressing the American people by writing, in part, “I now begin the journey that will lead me into the sunset of my life.” That journey took 10 slow and painful years. His loving wife Nancy referred to it as the long goodbye.
Far too many Canadians endure the long goodbye. My own father, who I cherished, passed away from complications due to Alzheimer's, and I am joined by many who have dealt with or are dealing with a loved one suffering from one of the various forms of Alzheimer's and dementia. Again, we know that this is going to increase.
The bill I have put before you, first of all, proposes to establish a round table to receive input from all Canadians. It would develop a national strategy, while ensuring the autonomy of the provinces remains intact. Second, it would encourage greater investment in all areas related to Alzheimer's and dementia, in addition to coordinating with international bodies to fight against the disease. Third, it would seek the assistance of the provinces in developing and disseminating diagnostic and treatment guidelines based on new research. All of these measures have been thoroughly considered to ensure the successful passage of this legislation.
Importantly, please note that this bill does not restrict timelines or financial criteria. This is a deliberate intention to remove potential barriers, such as the need for a royal recommendation. Simply put, this bill is crafted for implementation, achievement of deliverables and, ultimately, resilience at third reading. The objective is to enact legislation that would provide solutions to assist those who suffer from Alzheimer's and dementia, and to aid family members and caregivers.
The World Dementia Council was created by the G8 in 2013 as a global coordinating movement against Alzheimer's and other dementias. It's trying to harmonize those efforts and bring together global know-how.
Canada, along with its G8 partners, had convened a meeting in London, England, in December 2013. The sole purpose of that meeting was to provide a structure for a worldwide response to this crisis. It was the first time that the G8 countries had gathered together to address a health care issue. It's clear that Canada has already agreed to work with our partners to address Alzheimer's.
In order to fulfill this mandate, we have to develop similar programs here at home. Bill would help achieve this outcome through the national strategy. I would reiterate that Bill C-233 would respect the health care accountability of each province. I was very careful in the drafting of this bill to ensure that it does not require a royal recommendation.
I would be remiss if I didn't acknowledge and thank the Alzheimer Society of Canada for their unwavering support of this bill. Their mandate and the objective of this bill closely align and support one another. The Alzheimer Society stated that it was pleased to see political parties working together to address dementia. It urged all members of Parliament to get behind this bill, suggesting that a national strategy focusing on research, prevention, and improved care is the only solution to tackling the impact of this disease.
I believe that support for this bill is the right thing. Alzheimer's and other dementias are major health issues that impact hundreds of thousands of Canadians, and it is a problem that is growing every day. Canada needs a strategy now, so Canadians can be prepared to take on this health crisis in the future.
Thank you for your support.
I'd like to now turn it over to my colleague, Robert Oliphant.
You, as members of this committee, have the chance to do the same thing we are modelling for you today, which is to work collaboratively to get a bill passed that has its roots in the New Democratic Party with Mr. Gravelle and is continuing now with the other two parties in the House. I think this committee has a chance to make history by having the first national disease strategy adopted by Parliament. We are not unaware that it could become a model for other diseases and that there is a hunger for the federal government to play a leadership role—not encroaching upon any provincial powers to actually do the delivery of health care—by providing an operation of collaboration, co-operation, and best practices.
I want to begin by telling you the story of Ewart Angus. Ewart Angus was a member of the church where I was a minister for many years in Toronto. Ewart died, however, before I became the minister, and he left a sizable amount of money to the United Church of Canada. The United Church of Canada sort of lost track of that money and allowed it to grow over many years. I discovered it in the late 1990s. It had reached $5 million, and it was earmarked for seniors care in north Toronto. Nobody knew what to do with it. I did.
Ewart had been a member of our congregation and we asked for the money to be transferred to that congregation to enact its vision of providing care for people with Alzheimer's and other dementias. We built Angus House on Merton Street in Toronto, a really amazing model for Alzheimer's care. It has three floors of market and subsidized rent apartments geared towards seniors, and two floors for Alzheimer's care. This means that if one member of a couple has dementia, one of them can stay in their home while their spouse goes to a secure floor with good medical care. This was originally intended for early Alzheimer's, mild stage, but has now progressed to medium-stage and even more advanced-stage Alzheimer's.
Being good fiscal conservatives, as I am sometimes, we actually ended up with $2 million left over at the end of that project after having built the building, so we built another one called Cedarhurst, which is in Don Valley West, coincidentally. It provides another setting of 26 rooms for long-term residential care for people living with dementia.
It's based on a model in Australia, which we as a congregation came across, of relational care that was developed by Dr. John Tooth. Small groups of people with dementia, five at a time with one personal support worker, live in a residential setting and gradually develop a community that honours the person. It continues to this day. I was at Ewart Angus Homes' second campus, Cedarhurst, last week, and they are continuing to evolve and develop.
We need a national strategy because that model of care of purpose-built, intentional housing for people with dementia and long-term care needs is unfortunately almost unique in Canada. It links with Sunnybrook Health Sciences Centre, the University of Waterloo, and a variety of satellites. However, it is quite limited.
Mr. Nicholson's bill offers the possibility of taking best practices from a place like Ewart Angus Homes and spreading them across the country. It does that by capturing the attention of the Minister of Health and requiring her—or him in the future—to submit an annual report to Parliament. It fosters co-operation and collaboration through an advisory council, and it demands an updating to Canadians on how we're doing. It encourages increased funding for research, clinical care, patient support, and family support. It does that in the way that the federal government alone can do it, through the powers of convening, the powers of organizing, the powers of displaying exemplary forms of care, and by ensuring that we're able to spread that across the country.
There may be gems of care I don't know about in Winnipeg, Vancouver, or Cape Breton Island. I don't know where those models of care are.
By having a collaborative approach, we will learn where those things are and be sure that we have that kind of co-operation, and also bring in international best practices. I think the bill is quite clever. It's clever in that it draws attention to the issue. It requires the government to pay attention and report back to Canadians. It fosters collaboration, through an advisory group, and it begins to put some accountability on the government, as Canadians are looking for it for this particular disease.
I'm sure you've had drawn to your attention the report that was issued on November 15, 2016, "Dementia in Canada", by a Senate committee, which is co-chaired by my good friend and colleague Kenneth Ogilvie, and Senator Art Eggleton. It's a very fine study on dementia. It calls for a collaborative approach, what they're calling a Canadian partnership, to address dementia. By having an advisory committee embedded in this legislation, we would actually be able to live out what the Senate—after a very thorough study, much more thorough than we've done in the House of Commons—would actually envision. I commend it to your attention and to take great care as you go through clause-by-clause study on the bill, that we don't lose the spirit of what the Senate has learned, that Canadians are looking for leadership. We can provide that leadership by having such an advisory council bringing together the best of clinical treatment and research, as well as social workers and family caregivers, and those living with dementia.
I'm going to close by talking about an event I was at last week. The Alzheimer Society of Toronto, a formidable force under the umbrella of the Alzheimer Society of Canada, and the Alzheimer Society of Ontario, had a fundraiser. It was an amazingly successful fundraiser with really the best dinner I've had at a fundraiser in my life, but that's an aside. At that event, a woman with Alzheimer’s made the keynote speech. She carefully and cautiously chose her words and moved me to tears, as a person who is aware of her circumstances and is looking at what my former colleague Marian Ritchie called the long journey home. She gave me the courage and empowered me to keep fighting this fight. I'm encouraging you to do the same to make sure that we show Canadians that this Parliament takes this disease seriously and that we take every step we can to make sure that we engage with those who know more than we do and make a difference in the world of Alzheimer's and other dementias.
I'm supportive of any measures that change the Income Tax Act, quite frankly, in terms of giving credit to people who take time off to look after family members. There have been steps in that direction, and I'd certainly welcome anything further, because these things do take a great toll on families. That's one of the things that has impressed me. In fact, one of the witnesses you had here, I believe yesterday, Tanya Levesque, talked about how much time she has had to devote. What happens is that it becomes, quite frankly, a full-time job for the people who are the spouses of the individuals who are suffering from this. They need care all the time. I set out in my opening remarks the amount of time it takes health care workers when people end up in these facilities.
I'm hoping, and it's a sincere hope, that some day we will solve this, that we will get a cure for Alzheimer's, that we can do this, but it's not going to be done unless there is coordinated research into this. I'm hoping that a bill such as this would help that interchange, that exchange of information.
My colleague Mr. Oliphant spoke about the model they've instituted in his area of Toronto with respect to the treatment of people. This is exactly the kind of information we want to share. I believe that bringing together an advisory council as set out in this bill would be a step in that direction.
I might just add that the advisory council could look at other issues. Much of what you say is really within provincial jurisdiction and the delivery of health care. This body, however, could look at things that are in the federal realm to ease that burden on families and caregivers.
I should mention that, at Ewart Angus Homes, the monthly charge for someone living in that home on Merton Street is in the $2,000 range. I think it's about $2,400 a month right now, between $2,000 and $3,000 a month. At Cedarhurst it's $7,000 a month. They're both not-for-profits, but because we have no provincial subsidy for the one home that we have for the other, that's how much it costs. We have to look at ways to find support.
People will be living at home. They need home care. They need all those things, which every disease group needs. I think this is a way to draw attention to those needs in a profound way, which will have spillover effects into other diseases as well.
One of the things about this is that it does not take up all the time, efforts or resources of the health minister. We're not demanding that of the minister. I know the ministers of health, whether provincial or federal, have a huge number of things. It's set out in a way where the committee is brought together a couple of times a year, and then with a clause to revisit the whole idea.
When I thought about this area of Alzheimer's and had the opportunity to look at it, I saw there was a gap in this area. It's something where, even 30 years ago, if you started talking about this, I don't know how aware I was, or anybody was, of these things. This has grown exponentially. I read in the last number of months, prior to introducing this bill, that this thing is going to be doubling. With the aging population in Canada, age is one of the criteria that you would look at, but quite frankly, it's independent of aging. We all know people who, in their forties or fifties, have Alzheimer's. I thought it would be good that we focus on this particular disease. Again, if you look at it carefully, it's not taking up all the minister's time. I think it's well worth the resources and the time.
I understand there are amendments coming in.
I understand taking a named society out of the bill. I get that, because those are temporal, and you want a bill that is bigger.
I think it's important to focus, as the Senate has, on dementia. I get that. I think taking any mention of Alzheimer's out is problematic politically, as well. I think there is a way to shape that phrasing that at least preserves Alzheimer's in the bill in some way, while understanding, as the Senate did, that dementia is quite broad.
I would hope that any kind of expunging of Alzheimer's all the way through doesn't happen and that there's a clever way to ensure that we keep that word in there. I argue partly out of a personal story. I have seen in my own life how Alzheimer's is what people first think, and it can actually do a disservice to people with other dementias, so I understand the reason to focus on dementia. I would just try to hold some concept of Alzheimer's in this bill.
Mr. Chair, I'd like to share my time with the honourable Ms. Harder, please.
First of all, I have to applaud you, Mr. Nicholson, for your work on this bill. It's a fantastic bill. I applaud you too, Mr. Oliphant, for supporting the bill.
I think it's something that has to be done. My grandfather had Parkinson's as well, and I know how hard it was for him to go through nine long years in long-term care.
I know both of you have likely seen the proposed amendments to this bill. I assume you have. Mr. Oliphant, you just talked a little about one portion of it.
I'd like to know Mr. Nicholson's thoughts on the proposed amendments and perhaps he will share with us any concern he has there. Likewise, Mr. Oliphant, could you share your thoughts on the proposed amendments to this bill?
Mr. Webber, thank you for your interest in this.
This bill was unanimously supported by Parliament at second reading. As you know, that's when bills are substantially supported or not supported. I was very grateful at the time that this received the support of every single member of the House of Commons. That's what you're dealing with here, number one.
My intention was to focus this on Alzheimer's because of my belief that someday we will get a cure for this, but there should be a coordination between all those who want to do something about this disease and want to find a cure and for all those who want to care for people who are suffering from disease.
My colleague Mr. Oliphant made a very good point. If there are good practices somewhere, then let's share those.
I remember when I was a regional councillor. When we had seniors homes in the region of Niagara, they kept learning from the previous ones that were built, and they shared information. It was fascinating and heartwarming for me to see that, as each one got built in Niagara, they kept building on what they had learned or what they had heard on the best way to treat.
To the extent that we do anything to coordinate that and bring together these good ideas, we are further ahead on this. I don't want this to get lost by including all diseases. Do you know what I mean? I'd like to solve all health diseases; everyone would. But I like the focus, and I believe the focus of the bill, as it was passed by Parliament at second reading, is on Alzheimer's and other dementias.
I agree. I guess if I'm going to go to the wall, it's for that advisory committee. That would be my number one concern on this bill, because I know the way things get lost in bureaucracies and ministers suffer from the worst disease, which is called bureaucratic capture.
What the advisory committee does is it ensures there is a living, constant community of advice coming from people on the ground. At a federal level, that can get lost very easily. It's a little easier to keep that at a local level or at a provincial level. At the federal level, to keep this real and away from getting into bureaucratese, I think we need that kind of a committee. It's a very light committee, and it's not onerous. I think ministers could benefit from that.
In terms of Alzheimer's and other forms of dementia, as I said, I would like that name in there somewhere. I don't want to lose it completely. I understand broadening it, because of Parkinson's, vascular and other forms of dementia. I get that as well. I've even noticed that Ewart Angus Homes had to develop and move from Alzheimer's, to Alzheimer's and other dementias, to dementia and Alzheimer's. It's the way the world is.
Thank you, and thank you to our witnesses today.
I spent many years volunteering for an organization that provided respite. A large number of the families that I worked with were dealing with dementia. I would either support the person with dementia or support the family in different ways. I have a great amount of compassion for the significant impacts this has on communities and the families.
My first question is going to you, Mr. Nicholson. You mentioned thanks earlier to Claude Gravelle, who introduced Bill , a national strategy for dementia. Unfortunately, that bill was defeated. It was a very close vote: 140 said no; 139 said yes. The majority of the Conservative MPs, including you, did not vote positively for this bill.
Given how similar your legislation is to the last bill, why did you choose to narrow its focus?
I thought about this, as I say, about six months ago, and I remembered the bill because.... I started reading about the problems with Alzheimer's and indeed other dementias while I experienced this in my own family. When I looked at it, I thought the bill we had before Parliament would have required a royal recommendation. That was what we heard at the time. That means it wouldn't have gone forward.
The other problem with it was in regard to the timelines. If you'll notice, in mine I made it that the minister will convene a meeting within a 180 days, within six months, basically. I thought that was more realistic than a statute requiring the minister to move on this thing in several weeks. I didn't think that was realistic. Plus the feedback that I received at the time was that a royal recommendation would be needed; therefore, it wasn't going to proceed.
That being said, when I thought about it, I thought okay, if we can modify it, modify those challenges, then I believe the bill should be able go forward. My colleague Mr. Oliphant will confirm this. At the time I spoke with him about this, he analyzed the bill just on those counts alone. As it comes before you today, I don't think you've heard anybody say or had any advice that it will need a royal recommendation, because we tried to be very careful. I believe the timelines are very realistic.
At the same time, the overall concept of getting into this area, on every occasion, I have mentioned Mr. Gravelle. When I have spoken to people privately, who, as you can probably imagine, have engaged me on this, I have pointed out that this is not the first time Parliament has had a look at this. I hope that it goes forward.
Again, I asked a colleague from another political party to second this bill here. I do want it to be accepted by everyone.
Those are my comments.
I would like to add to that.
Back in 2011 the people spoke and sent me home from this place, and they brought me back in 2015. Between 2011 and 2015, I was president and CEO of a national health charity for people with asthma—another “A”. The way we would focus as a health charity is that we would prefer not to have remuneration at a government advisory board, because that is part of our job as a society. We would like expenses paid for going to meetings.
However, to maintain our independence, to maintain our integrity as a not-for-profit and charitable organization, and we were both a patient organization as well as a health charity, we would think it's actually appropriate for us to work in that charitable sector advising government. That doesn't mean we don't want government funding for various projects. We were always looking for PHAC, Public Health Agency of Canada, funding, etc.
However, I would say that part of the bill is not a negative; it is a positive in the health charity world. It's the way we work. It's the way we keep our independence, the way we do it.
In terms of caregivers and patients going to those meetings, again, we think expenses, obviously...and that's the way meetings happen; there's a budget for a meeting. But remuneration in terms of a per diem payment for your expertise would not be appropriate.
It's an excellent point and that gives me a chance also to commend Mimi on her fine work while she was the CEO of the Alzheimer Society.
Her point is well taken, that there are certain diseases that disproportionately affect women, and this is one of them. Dementia does disproportionately affect women. In terms of the gender-based analysis we believe has been done—two guys sitting down here, frankly—we're looking at this disease to recognize that diseases that have affected women have historically had less attention, less funding, less research, than diseases that have affected men if you look at the funding that has gone on, and we're trying to change that.
I don't think that we have a focus on women in this bill, but because we're looking at dementia, it will focus itself on women and men. Since women have that caregiver facility, I think that looking at other things from the federal perspective that could affect this, whether it's changes to EI or episodic respite care and those kinds of things, those kinds of things could be discussed because there is a federal mandate there. I think this is an important statement that we need to put attention on diseases that have disproportionately affected women.
I want to come back one more time to the intent of the bill. I'm sorry to be focused on this.
We heard from Dale Goldhawk, the vice-chair of Alzheimer's Disease International, and from David Henderson, Canadian Society of Palliative Care Physicians. We heard from Kathleen Jamieson and Sheila Pither, Council of Senior Citizens' Organizations of B.C. We heard from Mimi Lowi-Young and others. They all spoke to the need for a national dementia strategy. They all want a cure for Alzheimer's, but they spoke to the need for a national dementia strategy.
I'm concerned that there are two agendas in this bill. There is the drive for the cure for Alzheimer's, but at the same time there's a need to have a national strategy on how we help people and caregivers living with dementia continue.
One last time—and maybe I'll start with you, Mr. Oliphant, and then Mr. Nicholson—I'll ask you what your views are on separating these out a bit more.
It's great that you support each other so well.
We deal with some incredible subjects at this committee, and we hear some incredible testimony. The testimony we heard today and previously on this subject was really moving.
This committee hears things. We just wish that all Canadians could sit in on this committee sometimes, and hear about opioid addictions, pharmaceutical issues, and Alzheimer's disease issues. We'd probably have a much different approach to health issues if everybody could hear what we hear.
The first line responders, the paramedics, and the firefighters who land on the scene quite often, to hear their testimony, it's incredible.
Anyway, we thank you very much.
Actually, I just want to blow my own horn here a little bit. Years ago, and Mr. Nicholson might remember, I had a private member's bill to develop a brain tumour registry in Canada. There was no registry; there were no records. Doctors couldn't compare situations across the country. That was a private member's bill that passed, as yours hopefully will. It's quite gratifying to have that happen.
Thank you very much for your testimony.
We're going to take a break, and then we're going to do clause-by-clause study, and see if we can complete this.
Thank you for the question.
It was based on the first round of testimony, where we heard that we needed national strategies for dementia. There was a real weighting to dementia. We heard from the witnesses, the caregivers, and others that this was their focus. But I heard today that a big part of Mr. Nicholson's intent was to deal with Alzheimer's disease specifically, so I'm going to withdraw them. I'm not going to table them. They aren't on the table. I think we should do the clauses.
I'm torn between if every single disease advocacy group wants to have.... I mean, we can deal with every single type of cancer, every single type of diabetes, or every single type of anything, but is it a question of disease emphasis or the condition? It's like palliative care. I think we need a national strategy for palliative care, absolutely, and the causes of people being in palliation are multiple.
Likewise, we need a national strategy for dementia. The causes of dementia are multiple, but based on what I heard from Mr. Nicholson in terms of his intent, I think the need to leave in the reference to Alzheimer's is important. That's why I'm not tabling them. I'll make some changes through these to rebalance that a bit where I think it is a bit too weighted to Alzheimer's. Is that fair enough?
I will be speaking in French.
You can put on your earphones
maybe for the first time, I don't know.
We are in the process of improving a bill. I really want us to hear from experts. However, I am not too sure if we have to agree with the one with specific expertise in leading an advisory board and who tells us that such a board should have 19 or 20 members, or with the people who have been working on this bill for months.
Just now, we were at each other's throats, so to speak. We discussed odd phrases here and there and now we are discussing how many members the advisory board has. You can see how many we are; imagine what would happen with more than 15 people around a table. Surprisingly, I find myself agreeing with Ms. Harder. Things can get complicated with more than eight people.
The bill mentions 15 people. Canada is very big, but I find that is plenty enough to allow for some efficiency. We have to respect the thoughts of those who have worked on this bill for weeks and months. They certainly considered the number of members. I don't think that there is any scientific data to tell us a board should have 15 members, or 20.
I understand the intention here, and I commend it. I don't want anyone to be excluded but I do want it to work efficiently, that's all.
I was just going to point out that it's not like a sword I'm going to die on or anything like that.
Around the table we have 11 members, right? I think we do a pretty good job. I don't want to be exclusive on it, but my understanding is that with some of these boards, if they can have up to 15 members, then I can almost guarantee that they will have 15 members. My idea was just to make it a little easier on them for voting. When we come to contentious issues, we don't always agree with the government, but we do understand there are a number of votes that get things passed so that the work gets done.
That's why I recommended an odd number, and I was hoping it would be accepted as a friendly amendment, because with government, if you allow them 15, they're going to have 15, and if you allow them 25, they will have 25. At the end of the day we do pretty well with 11 around the table, so 19 sounded like a good compromise to me.
Is there any debate on the proposed amendment?
(Amendment agreed to)
The Chair: Shall the preamble carry?
Some hon. members: Agreed.
The Chair: Shall the title carry?
Some hon. members: Agreed.
The Chair: Shall the bill as amended carry?
Some hon. members: Agreed.
The Chair: Shall the chair report the bill as amended to the House?
Some hon. members: Agreed.
The Chair: Shall the committee order a reprint of the bill as amended for the use of the House at report stage?
Some hon. members: Agreed.
The Chair: Done. Thanks very much.
The meeting is adjourned.