Health Committee on Nov. 17th, 2016

[Rachael Thomas, Conservative, Lethbridge, AB]

Thank you very much.

Mr. Chair, do I still have a few more minutes?

[The Vice-Chair, Conservative, Len Webber]

You have a minute and 17 seconds.

[Rachael Thomas, Conservative, Lethbridge, AB]

Thank you very much.

Mr. Henderson, as you were talking, the question that came to me was whether you've seen any improvements in our system over the years in terms of research or providing care. Have we improved at all, or have we stayed fairly stagnant over the last number of years?

[Dr. David Henderson]

There have been some improvements, and it's always good to try to recognize those when they are happening. In the last year, I've been constantly saying that we are a country of pilot projects. We have a lot of good pilot projects that never seem to go anywhere, even if they're successful. Basically, we need to stop the pilot projects. We need to look at what's already been developed and we need to start implementing them. It's hard to do that without a national strategy, both for this, specifically, and for palliative care in general.

I know your time is running out here, but I just want to quickly clarify something. When you ask about palliative care, there's often a misperception that palliative care is in a facility, whereas most palliative care is in the home setting. With the last health accord, one of the targets of monies for home care was the enhancement of palliative care. Fortunately and unfortunately, probably the only thing that we saw happen in many provinces—although I certainly can't speak for every province—was that there was actually a bit of an augmentation to home care services if patients were attached to palliative care services. So it's still something to look at. Unfortunately, some palliative care programs look at more of a time-based, prognosis-based time to be involved versus ours in particular, where we look at needs-based.

Palliative care is really intended to be accessed early on. That's when it's most effective. That's when you can start working with people, their primary care physicians, and their specialists to augment things, to help make sure that things like advanced care planning are done to determine the goals and wishes of patients. If staying home is the goal, that's the time when you can ensure that you have other teammates around to help navigate the system to make sure that this happens. Now, unfortunately, that doesn't happen everywhere, but it is something that should be happening. Again, it should be happening earlier on for people. I have cared for people with that same kind of condition in their homes. There are a lot of factors, but those people have been able to stay at home quite comfortably.

[Rachael Thomas, Conservative, Lethbridge, AB]

Yes.

[Dr. David Henderson]

At the same time, though, a lot of it depends on family support.

[Rachael Thomas, Conservative, Lethbridge, AB]

Thank you very much.

[The Vice-Chair, Conservative, Len Webber]

We'll move on now to Mr. John Oliver.

You have seven minutes.

[John Oliver, Liberal, Oakville, ON]

Thank you.

Thank you very much for your testimony. It has been very significant. It's really important to hear it in terms of palliative care, home care, and just the impact of living with and supporting people with dementia.

Like my colleague Rachael, I have family members and friends with different issues. I have a mother with Parkinson's and I have a father with vascular dementia. I've had a lot of exposure to these conditions, and I'm aware of the complexity and the lack of a focused approach to managing people with dementia. I'm very sympathetic to the need for a national dementia strategy and for an action plan for dementia.

I do want to focus, though, on the bill itself and ask you, specifically, about the weighting of the bill towards Alzheimer's versus all of the other forms of dementia. Alzheimer's is a disease; dementia is a syndrome. So with dementia, there are different groups of symptoms, and Alzheimer's is, right now, the predominant cause of those symptoms. I think about 50% to 60% of dementia cases originate with Alzheimer's. This morning we were at a session with regard to the tsunami of diabetes, and whether vascular disease will eventually be as equally prevalent in the cause of dementia.

The bill itself is not about a national dementia strategy. It's about a national strategy for Alzheimer's disease and other dementias. When you look at the conference that the minister is directed to hold, and when you look at the committee that will be formed to give advice going forward, there's a weighting towards Alzheimer: thus the Canadian Alzheimer association and Alzheimer groups.

I just want to get your perception on this. Is the goal here a dementia strategy or is the goal here an Alzheimer's disease strategy? I'd like to hear from all of you on this one, if I could.

[Mimi Lowi-Young]

If I may, I'd like to start off the conversation about this.

The word “Alzheimer's” is often used—we say Alzheimer's Disease International and the Alzheimer's Society of Canada—and we've often been asked, “Why don't change your name to the Dementia Society of Canada?” I think we need to recognize that dementia is the umbrella, and that, yes, people with Alzheimer's make up the largest proportion of people with dementia. I think we should talk about dementia, because that's the umbrella, and all the different types of dementia fall under that, although Alzheimer's is the largest.

We're seeing much more now—I think it's because our efforts with good diagnoses—that we're understanding mixed dementias. There are many more mixed dementias. Some people have both vascular dementia and Alzheimer's disease.

I think the naming of the bill is interesting, but from my perspective, I think we're really talking about dementia and being able to care for people with all the different types of dementia. There may be different needs for the different types, but dementia should be the overall umbrella. We should not just focus on Alzheimer's.

[Tanya Levesque]

I could also add something to that.

I didn't know the difference between Alzheimer's and dementia until I took a course at the Alzheimer Society. That's when I learned that dementia is an umbrella and Alzheimer's is under that umbrella, as is vascular dementia. As to the naming of the bill, as she said, it's interesting, but it should be a dementia strategy to include everybody.

[Dr. David Henderson]

We could go with what the public often calls it: old-timers disease. Often people haven't heard the word Alzheimer's; they hear “old-timers”. Some of my older patients and families especially will call it that.

But I agree with what everybody is saying. It really needs to be all-encompassing. The reality with the strategy is that most of what comes out of it will address the needs of all the underlying types of dementia as well. It could be part of the education process, too.

[John Oliver, Liberal, Oakville, ON]

Do you have any reaction in British Columbia to focusing on dementia versus the Alzheimer component?

[Kathleen Jamieson]

Speaking just for myself, I would prefer the term dementia. I feel that labels are useful, but they do change over time. Since dementia is a broad category, it makes sense to call the bill dementias rather than Alzheimer and dementias.

[John Oliver, Liberal, Oakville, ON]

If we're looking at the bill and the construct of it, I'm also a bit concerned about naming a society in it. I would hope this piece of legislation has legs for 20 or 30 years, and societies come and go.

You'd be comfortable, then, as a group of witnesses with us turning away a little bit from specific reference to that entity and to embrace Alzheimer and other associations—the Canadian Stroke Network, Parkinson's, obviously Alzheimer's, even the Canadian Diabetes Association, and a number of different groups—would be dealing eventually with the consequences of dementia.

[Dale Goldhawk]

Perhaps I could add to that, Mr. Oliver. In the world, many of the strategies that I spoke of speak of dementia strategies and don't necessarily mention the Alzheimer tag, although in the beginning there were all these Alzheimer societies. They're very involved in that whole process. But I don't believe that anyone, anywhere, engaged in the fight would object to the fact that it would be a dementia strategy.

[John Oliver, Liberal, Oakville, ON]

I just want to emphasize that I totally support the need for this across Canada. In every community, we have Canadians who are suffering from forms of dementia. We have caregivers who are often feeling abandoned and alone trying to deal with patchy home care, with unclear or very uncertain financial resources, and the burden on Canadians of this set of symptoms. We need to get on and address it.

I want to thank you again very much for bringing forward your testimony and sharing your personal stories and personal experiences with us.

With that, I think my seven minutes are probably up.

[Mimi Lowi-Young]

Mr. Chair, may I just make a comment?

[The Vice-Chair, Conservative, Len Webber]

Yes.

[Mimi Lowi-Young]

I just want to reassure Mr. Oliver in terms of his thinking. Already many of the societies and associations are working together with a focus on dementia. Heart and stroke, Alzheimer's, and diabetes just recently came together with a common submission to government about prevention.

[The Vice-Chair, Conservative, Len Webber]

That's excellent. Thank you.

We'll move on now to Rachel Blaney for seven minutes.

[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?

[Mimi Lowi-Young]

If I may, that is why in my presentation I talk about the Alzheimer's disease and dementia partnership. What's really important is that we've seen success in the Canadian partnership against cancer, where the organization became an entity that convened, integrated, and brought together the researchers, providers, and people with the disease to make a real difference in terms of the action plan. That's why the strong recommendation that this needs to be considered.

Otherwise, there's no teeth in terms of getting things done. We'll study again and we'll put more reports out, but now we need to take some action. I think that was the whole idea of Claude Gravelle's effort in the previous bill. Yes, I understand some of the issues around a private member's bill, but I think there's an opportunity here to lay some groundwork for building this to something that will be significant.

Thank you.

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

Thank you.

I ran a non-profit organization for over a year, and I was also a volunteer for a hospice. I also volunteered with respite care. I have to say that in my time with respite care, the majority of the people I supported were family members who were living with a form of dementia. I remember doing things like taking them out to shop and do things. I remember one of the people I worked with saying, “It's so nice that once a week I get to feel like a normal human being, where somebody picks me up, takes care of me for the day, and then brings me home.” So I understand the amazing work that volunteers do.

One of the concerns with this legislation is that it doesn't contain any provision to augment the capabilities of the voluntary sector through investment and training. In B.C. I know you and everyone has done so much in preparing people and preparing volunteers as well. Can you explain the importance of volunteerism to the work being done every day to support individuals and families affected by dementia?

I will take answers from anyone.

[Dr. David Henderson]

I can speak to that briefly.

Within the palliative care world, we're starting to move forward with something that's becoming more of an international phenomenon, although it's based on work done by Allan Kellehear from Ottawa, called “compassionate communities”. Its focus has been looking more at people with terminal illnesses, and when we're dealing with dementias, we're dealing with incurable, life-limiting illnesses. I think that's something that needs to be promoted more, and not only with volunteers in the official capacity. With all palliative care programs, there are generally volunteer components through hospices and such, but it's also linking with community businesses. We're starting to have businesses approach our local hospice and say they're already faced with this. They often have people within their companies who have been diagnosed with a terminal illness, or they have caregivers, and they need to know as a business how to support these people best. These are wonderful employees, and they want to enable them to do what they need to do, while keeping them healthy so the companies can get a return on their investment and have them come back.

It's wonderful to see the business communities reaching out to us to ask for that. We're starting to do more education with businesses, a lot of different organizations, to help them understand this and how they can be part of it. It's a wonderful initiative, and there are some areas around the country that have already taken this on, and some towns and cities that have been labelled as compassionate cities and towns. It's something that we as a society need to try to continue to push forward.

You've heard the saying that it takes a village to raise a child. Well, we can't stop raising that child when they become 18. Lifetime is from beginning to end, and we need to support people right through as a village rather than as individuals. That's something that doesn't really need to cost us a lot of money. It's just getting our society back on track and starting to recognize that there's a lot of value in becoming a volunteer and becoming a provider to help with this.