Health Committee on Nov. 24th, 2016

[The Chair, Liberal, Bill Casey]

I call the meeting to order. We have quorum and we'll welcome our guests, Rob and Rob.

We look forward to your presentations. We have quite an aggressive agenda today to try to get through the witnesses and then clause-by-clause consideration. I've suggested to the witnesses that the shorter their presentation, the more questions we have to ask.

I have another matter. I'm seeking unanimous consent to see if we can just go to one round of questions. Does everybody agree to that in the interests of getting through this issue? Do I have unanimous consent to go to one round of questions?

Okay, one round of questions it is. We'll have one round of seven minutes.

We'll start with one of the witnesses, the Honourable Rob Nicholson.

[Rob Nicholson, Conservative, Niagara Falls, ON]

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 C-233, 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 C-233 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.

[The Chair, Liberal, Bill Casey]

Thank you very much.

Mr. Oliphant, you have the floor.

[Rob Oliphant, Liberal, Don Valley West, ON]

Thank you, Chair, and thank you, committee members.

I'm hoping that today you will experience and see what I believe is the best way legislation should be crafted and taken through the House of Commons, in this collaborative effort.

I want to thank my colleague. One of the things about this new Parliament—and I think that there should be, and it's gradually starting to be—is a collaborative way of working together. Working with the member for Niagara Falls, Mr. Nicholson, has been a great treat. He is a senior member, a former minister, who knows the way things actually work, and who makes me look good. I want to thank him.

[Rob Nicholson, Conservative, Niagara Falls, ON]

Make sure that's part of the record.

[Voices]

Oh, oh!

[Rob Oliphant, Liberal, Don Valley West, ON]

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.

Thank you.

[The Chair, Liberal, Bill Casey]

Thank you very much. I appreciate your comments.

Ms. Harder, earlier we moved a motion with unanimous consent to just reduce it to one series of questions. We're not trying to prevent anybody from having an opinion or anything, but today is our only chance to voice our opinion on this bill. If we don't complete the bill today, it will go back to Parliament without amendment or comment. I'm not trying to rush anybody, but I just want to make sure that we have a chance to have our voices heard. I do sense a consensus on it.

We're going to start our question period now. There will be seven-minute rounds of questions.

We'll start with Ms. Sidhu. I understand you're splitting your time with Mr. Oliver.

[Sonia Sidhu, Liberal, Brampton South, ON]

Yes, Mr. Chair.

First, I want to thank you for coming together to put forward this bill. We heard some very powerful testimony at the last meeting on this topic. I want to highlight all of the caregivers, particularly the challenges they face with the wait times for getting PSWs and other support workers. I met with the Canadian Nurses Association the other day and we discussed this matter.

Can you talk about how you view the issue of support workers and family members who need to take time off to support their ailing parents or dependants, as reflected within this bill and the future strategy?

[Rob Nicholson, Conservative, Niagara Falls, ON]

Let me start off.

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.

Thank you.

[Rob Oliphant, Liberal, Don Valley West, ON]

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.

[The Chair, Liberal, Bill Casey]

Ms. Sidhu, you're time is done.

Now it's Mr. Oliver for the last half.

[John Oliver, Liberal, Oakville, ON]

Thank you very much for the bill. I think all of us know and have family members who are experiencing dementia, so it's a very important piece to come.

My question goes to the concept of it being a model for other diseases and the clause that deals with the establishment of the advisory board. I'm picturing a world where the minister is trying to run 15 to 20 advisory boards and how they would live with that and manage that kind of environment. Do you have any thoughts or comments on this, on what might be the criteria for when an advisory board would be established?

Another thought I have is on the time-limited nature of it. It's three years, with potential renewal. If we have just a three-year term and then sunset them, it might be easier. That's where I'm looking for advice on this: how do we manage multiple advisory boards?

[Rob Nicholson, Conservative, Niagara Falls, ON]

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.

Mr. Oliphant.

[Rob Oliphant, Liberal, Don Valley West, ON]

I would add that I think this is one of the most economical ways for a government to work efficiently. This actually serves a minister well. I don't think there is any minister who wouldn't be well served by having good advice. That good advice is unpaid. It is a meeting once or twice a year of experts. I think getting that kind of expert advice into a ministry, into the Department of Health, into the Public Health Agency of Canada, is a superb and very economical way of doing it, far more so than hiring consultants.

One of the realities is that governments hire consultants all the time. I think this is a much more effective, organic, and community-based way of getting that information into a minister's head and heart.

[John Oliver, Liberal, Oakville, ON]

I have one quick last question.

The focus is on a national dementia strategy. There's a weighting in the bill to Alzheimer's, and, as you know, there are multiple causes. Alzheimer's is the main cause, but there's Huntington's, Parkinson's, and vascular dementia.

Would you have a reaction if we focused this on dementia versus Alzheimer's and dementia and—

[Rob Nicholson, Conservative, Niagara Falls, ON]

Dementia is included, but the focus of the bill is Alzheimer's. That's the bill, because, again, from what I have read on this—and I've experienced it for quite a number of years, and I've done quite a bit of research in the last six months or so—it seems to me this is something we could someday be able to cure to really make a difference. I'd like the focus to be on Alzheimer's, but of course there are other dementias, and this is a component of that. Those are my thoughts on it.

Thank you, Mr. Chair.

[Rob Oliphant, Liberal, Don Valley West, ON]

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.

[The Chair, Liberal, Bill Casey]

Mr. Webber.

[Len Webber, Conservative, Calgary Confederation, AB]

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?

[Rob Nicholson, Conservative, Niagara Falls, ON]

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.

[Rob Oliphant, Liberal, Don Valley West, ON]

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.

[Len Webber, Conservative, Calgary Confederation, AB]

Thank you.

How much more time do we have?

[The Chair, Liberal, Bill Casey]

You have two minutes and 49 seconds.

[Len Webber, Conservative, Calgary Confederation, AB]

Just a very quick answer to this. You talked about the G8 conference on Alzheimer's back in 2013. What are other jurisdictions doing? Are they way ahead of us, Mr. Nicholson, with regard to—