Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue No. 9 - Evidence - June 2, 2016
OTTAWA, Thursday, June 2, 2016
The Standing Senate Committee on Social Affairs, Science and Technology met this day at 10:30 a.m. to continue its study on the issue of dementia in our society.
Senator Kelvin Kenneth Ogilvie (Chair) in the chair.
The Chair: Welcome to the Standing Senate Committee on Social Affairs, Science and Technology.
[English]
I am Kelvin Ogilvie from Nova Scotia, chair of the committee. I'm going to invite my colleagues to introduce themselves, starting on my right.
Senator Raine: Senator Nancy Greene Raine from British Columbia.
Senator Stewart Olsen: Carolyn Stewart Olsen from New Brunswick.
Senator Seidman: Judith Seidman from Montreal, Quebec.
Senator Frum: Linda Frum, Ontario.
Senator Eggleton: Art Eggleton, senator from Ontario and deputy chair of the committee.
The Chair: We are pleased to have the witnesses that we have today. I'll introduce them as I invite them to make their presentations in a moment.
I want to remind us and our audience that we continue to deal with our study on the issue of dementia in our society.
We have two international witnesses with us today. We're looking forward to their contributions. By agreement, I'm going first to invite, from the Government of Scotland, in Edinburgh, Mr. David Berry, Policy Officer with the Dementia Policy Unit.
Mr. Berry, I invite you to make your presentation.
David Berry, Policy Officer, Dementia Policy Unit, Government of Scotland (Edinburgh): Thank you very much. I apologize for the dark room I'm in. Hopefully you can see and hear me.
The Chair: We can both see and hear you. Please proceed to make your presentation.
Mr. Berry: Of Scotland's 5.4 million people, around about 86,000 to 90,000 people have dementia. That's the current estimate in terms of the challenge in Scotland. Within the U.K., health and social care policy has devolved to the Scottish Parliament and government. Within Scotland, we have 14 territorial Health Boards and 32 local authorities. That's just some general factual information about the health and social care landscape in Scotland.
I'm going to quickly recap where we've come to in dementia policies since 2007, when the current administration came into power. I'm then going to cover what we expect to do in the next three years, and then I'll cover a couple of extra elements of health and social care policy.
As I said, dementia has been a priority for the Scottish Government since the administration came into power in 2007 and remains a clinical priority for the Scottish Government.
The first National Dementia Strategy was published in 2010 in Scotland and the second in 2013. We expect to publish the third strategy around autumn of this year.
What has been deliberate within those strategies is they have been quite short and sharp, so we can adjust policy quite quickly if we need to. Rather than having 10-year strategies, we tend to have three-year strategies.
We have seen significant progress since 2007. In particular, diagnosis rates have improved significantly, with a 25 per cent increase between 2008 and 2012. We think that the national improvement support was a big part of that.
In terms of estimated prevalence and estimated diagnosis rates in Scotland at the moment, we think that depending on which model you use, either 50 per cent of people with dementia in Scotland have a diagnosis recorded or 65 per cent depending on which European prevalence rule we apply to the raw data that we have.
In 2013, the Scottish Government introduced what is probably it's most significant and distinctive initiative around dementia policy, which was introducing a national post-diagnostic service guarantee underpinned by a national target. We think that when it was introduced, it was a world-leading initiative. As far as we are aware, that's still the case.
I can say more about that later on if there are some questions, but essentially what that offers to everyone that is newly diagnosed is a year's worth of person-centred support which is coordinated by a named and trained link worker. We are going to develop that policy in the next three years. I will say more about that in a minute.
In 2011, we introduced the first standards of care for dementia in Scotland, which takes a human rights-based approach to dementia. The dementia standards are there not only to enable services to audit their services against the standards we would expect, but also for people with dementia and their families to be empowered and to have the power to go to services to say, "We expect this particular standard of care.''
Those standards have been in place for the last five years. They underpin what was also published at the same time, which was a national dementia health and social care workforce strategy and implementation plan. We continue to fund that work nationally to support local services delivering better dementia services.
In the last three years, we have national bespoke improvement programs for dementia in general hospital care — that's when people go into hospital for something generally other than dementia — and also a bespoke national improvement program around specialist NHS dementia care as well. There are two distinct improvement programs there, and they continue through the next three years.
As part of the workforce initiative I mentioned earlier, we now have approximately 600 Dementia Champions trained in Scotland. Dementia Champions are largely from the nursing workforce at the front line of care. So far most of them are trained within NHS general hospital care, but the ambition is to expand that program beyond general hospital case. The Dementia Champions are there to lead the behavioural change at the front line of dementia care within wards in hospitals.
We also have approximately 800 Dementia Ambassadors trained within social care. They fulfill a similar role, although they do a lot more in terms of training their own staff within carer home and care home settings.
I'll go on to say a bit about what we expect to be doing over the next three years, some of which is obviously, as you would expect, a continuation of what we've been doing the last three years.
At the end of last year, we took forward a national consultation around dementia with events across Scotland to directly speak to people, including families impacted by dementia, to see what they wanted within the next three years of national action. I'm going to highlight some of the main elements of what we published in March, which was a proposal from the Scottish Government for the next strategy.
We need to continue to take a whole-systems approach to dementia care. What we don't want is to have is people discriminated against or disempowered because of where they are in the care system or the progress of their dementia. It's important that people, regardless of how far their dementia has progressed, get access to the same standard of care.
We're going to take further action on diagnosis rates and post-diagnostic support. A large part of this is to test the relocation of post-diagnostic dementia services to within family doctor — GP — surgeries. That would involve the physical location of dementia link workers into GP surgeries so that family doctors would have more confidence and reassurance around the services on offer once a diagnosis is made.
Another advantage of that is to possibly make the prospect of a diagnosis of dementia for people who are worried about their memory and their families, that they don't have the prospect of going into a mental health service but have access to services directly on their doorstep within their GP's surgery. We want to test that over the next two years to see how that works.
One of the major initiatives in Scotland has been the integration of health and social care. I'll say something about that in a second. What we are going to do within the context of the integration of health and social care is work very closely with the new governance structures within health and social care at the local level — there are 31 of those — to develop even stronger home care for people with dementia.
Over the last two years, we've worked with five areas of Scotland to test a particular model of home care, and that is currently getting independently evaluated. That will get published later this year.
Probably one of the biggest shifts and emphasis for the next three years will be a significantly enhanced focus on palliative and end-of-life care for dementia. What we focused on in the first six years is very much the quality of life with people with dementia. That will continue, but we're also enhancing our focus on the end-of-life phase of dementia care. As part of that, we will be testing different service models, and also we'll be training the palliative and end-of-life care workforce around dementia and training the dementia workforce around end-of-life care issues, as well. It's a reciprocal approach to workforce development.
The Chair: Mr. Berry, can I ask you to speed up your presentation a bit? Thank you very much.
Mr. Berry: We're also going to continue to ensure that the long-term transformation of the residential care sector meets the needs of people with dementia, and there's work ongoing to do that.
At the heart of all, the national action on dementia has been and continues to be direct engagement as far as possible with people with dementia and their families and carers. There are various national groups established in Scotland that comprise people with dementia and people who have cared for or are currently caring for loved ones with dementia. They have direct access to Scottish Government ministers and officials. Their members are also embedded within the governance structures of dementia policy. So we work week in, week out with people with dementia. That's probably part of the strength of what we think has been successful engagement with people with dementia in Scotland.
I'll quickly cover the integration of health and social care. It's an ambitious program. It means that health and social care resources, traditionally separate, are now pooled together so that strategic local partnerships can plan more effectively for people with dementia.
We also passed the Carers Act in February of this year. It places a duty on local authorities to provide support for carers. I can say more about that if questions come up on it.
Finally, I'm going to mention some international work we do on dementia. As part of the G7 legacy work on dementia, we've been working with an organization called the International Consortium for Health Outcomes Measurement to develop global standards for dementia, and we're currently working with them to establish test sites to test those global standards.
I'll probably stop there, and I'll let you offer questions as appropriate.
The Chair: Thank you very much, Mr. Berry.
I'm very pleased to welcome, as an individual, Dr. Ronald C. Petersen.
Dr. Ronald C. Petersen, Chair, Advisory Council on Research, Care and Services for the US National Plan to Address Alzheimer's Disease, as an individual: Thank you very much and good morning, Mr. Chairman and distinguished members of this committee. It's an honour for me to present to you some of the basic underpinnings of the United States' National Plan to Address Alzheimer's Disease.
I am the chair of the advisory council for the national plan, a professor of neurology, and Director of the Mayo Clinic Alzheimer's Disease Research Center at the Mayo Clinic in Rochester, Minnesota. I also sit on the World Dementia Council, chaired by your Canadian CIHR, Dr. Yves Joanette. Today, however, I'm speaking as an individual; I am not speaking as a member of the advisory council or for the United States government. They require me to say that.
The National Alzheimer's Project Act was signed into law by President Obama in 2011. The law charged the Secretary of Health and Human Services with the task of generating the first National Plan to Address Alzheimer's Disease in the United States. The law also required that an advisory council be empanelled with 26 members — half federal, half non-federal — to advise the secretary on these issues. As mentioned, I've chaired that council since its inception.
In the plan, we refer to Alzheimer's disease, but we really mean Alzheimer's disease and related dementias, including dementia with Lewy bodies, vascular cognitive impairment and frontotemporal degeneration.
The plan has five goals. The first is up and away — the central goal: to prevent and effectively treat Alzheimer's disease by 2025. The second goal is to enhance quality and efficiency; third, expand services to people with Alzheimer's disease and their families; four, to enhance public awareness and engagement; and, five, to track the progress of the plan.
The law also required the plan to be updated annually and allowed the advisory council to generate recommendations. That's an important aspect of the plan, because the recommendations are not constrained by any federal restrictions on funding, et cetera. So the recommendations that come from the council are meant to be bold and ambitious with regard to meeting the goal of the plan by 2025.
For example, one of the chief recommendations that has been in the set that we've generated since the outset is the fact that we recommend the federal government spend $2 billion a year on research on Alzheimer's disease. This is in keeping with the amount of spending done in the U.S. for cancer, heart disease and HIV/AIDS. That's the kind of recommendation that cannot be incorporated in the plan itself, because the plan, again, is constrained by current fiscal requirements of the United States.
The recommendations are very important to allow that flexibility to the advisory council.
That's the basic structure of it. Has the plan been effective? That's somewhat in the eyes of the beholder in terms of what it has done.
One positive outcome from the get-go was the fact that this law required the federal agencies to start talking to each other. If my agency deals with Alzheimer's disease and yours does, too, maybe we know about you but maybe we don't. I think efficiencies have evolved from that.
A second accomplishment of the plan has been on the research front. The plan recommends that the National Institutes of Health hold summits on Alzheimer's disease, related conditions, what's going on, where we are, what are the gaps. Thus far, five summits have been held: two on Alzheimer's disease itself, two on related disorders and one on Down syndrome.
These summits have been significant; they're not just academic exercises where people get together and opine on their own research. Rather, out of each summit has come a set of recommendations that have been translated into milestones, and those milestones have gone on to affect the actual funding that is given to Alzheimer's disease. So the NIH then looked at those milestones and said, "We need to fund these priorities,'' so funding opportunities have evolved from those.
With regard to funding of Alzheimer's disease research in the U.S., at the beginning of the plan, the U.S. spent about $450 million on Alzheimer's disease annually. Over the next several years — from 2011 to now, which were periods of austerity, even sequestration — most federal funding budgets declined over that time frame. The research budget for Alzheimer's disease-related disorders has remained relatively stable or even increased a bump. That's to the credit of Dr. Francis Collins, Director of the National Institutes of Health; and Dr. Richard Hodes, Director of the National Institute on Aging. They have used their discretionary funds to keep Alzheimer's funding at least on par or increasing.
But the big change occurred last December when Congress allocated an additional $350 million to the federal budget for Alzheimer's disease research, bringing the total to about $991 million per year. That's tremendous — a doubling of the budget. We appreciate it, but it's short of the $2 billion that the advisory committee thinks is necessary to have an impact on this disease. So, while we're there, we still have work to do.
Another important law that was passed, following the inception of the national plan, is the Alzheimer's Accountability Act. This was passed by Congress in 2014. The Alzheimer's Accountability Act in fact asks the National Institutes of Health to generate a budget annually, asking this question: What will it take, in the next year, for the scientific community to reach the goal of the plan by 2025?
Last year, Dr. Collins presented the first so-called bypass budget to the advisory council at its summer meeting and asked for another $323 million. Now they're working on the fiscal year 2018 budget to present to the council later this year. So, I think, on the research front, we've made significant progress.
On the care and services side, we certainly have made several recommendations, such as establishing a workforce with skills to provide high-quality care to persons with Alzheimer's disease. We're recommending a timely and accurate diagnosis. As Mr. Berry was saying, it is so important to recognize how many people are accurately diagnosed with this disease. Education, and enlighten and support people with Alzheimer's disease and related dementia. Establish guidelines for the care of persons with the disease.
We've tried to empower the states with regard to the enactment of many of these provisions for care and services, since it's ultimately their responsibility, as it is that of the provinces and territories in Canada.
We've tried to develop culturally sensitive education, training and support material that pertains to a variety of ethnic groups.
We're focusing on the family caregivers or "carers,'' as they are called, to maintain their own health and well-being, since they are so vital in caring for individuals with the disease.
And a summit on care and services now is planned, much like the research summits, for 2017.
Another program that has developed in the states is Dementia Friendly America, and I would be happy to answer more questions on that. This actually emanated from my home state of Minnesota. I had very little to do with it, so I can't take credit for it. But the Dementia Friendly America movement is important in establishing the awareness and education of individuals in the community with respect to health care workers, police force, the business community, faith communities, to understand what it is like to have individuals with Alzheimer's disease participate in their community.
In summary, I think the National Plan to Address Alzheimer's Disease in the U.S. has definitely increased awareness of the disease. It has probably had an impact on the significant increase in funding for research.
I think it has established new public-private partnerships, which are vital, and we've also interacted on the global stage in terms of the World Dementia Council.
While we certainly do not have a cure for Alzheimer's disease and related dementias, I think significant progress has been made, both from the research perspective and from that of improving the quality of lives for individuals with these disorders and their caregivers.
I greatly appreciate the opportunity to address the committee today, and I'd be happy to answer any questions. Thank you.
The Chair: Thank you very much, and thank you to both of our witnesses, and I will now turn to questions.
Colleagues, in this case, with the one witness by video conference, could you please identify who you will address your question to in the first instance. Both can respond, but please identify who you would address it to in the first instance.
Senator Eggleton: Thank you very much and welcome to both of you, and thank you for being a part of our consideration of what we need to do here in Canada, particularly at the federal level, with respect to a national dementia strategy, which we have been urged by many witnesses, over the last few months, to engage in.
One of the issues that we have to determine is who should run this plan or who we should recommend to the government to run this plan. We know that there needs to be a lot of government support, and there are various government entities. Dr. Petersen, you mentioned CIHR, Canadian Institutes of Health Research, which are conducting some research, though not nearly enough or not nearly enough monies allocated for that purpose. But we need to take a more comprehensive approach to dealing with dementia, with Alzheimer's, with the caregivers and with the people who require the care.
We're trying to determine what kind of an organizational structure might work best to deliver this kind of program. I wonder if you might — both of actually, I will start with Dr. Petersen, but then Mr. Berry — comment in terms of how it is organized to deliver these programs and who the person is that coordinates it best? Is it outside of government, inside government? Dr. Petersen, I know you have your advisory council, but who does the day-to-day work on coordinating the national strategy?
Dr. Petersen: Thank you, Senator Eggleton.
It is an important issue and, of course, it's specific to the governmental organization of any particular country. In the U.S., it's the Department of Health and Human Services that sits over this. It's a major organization because HHS has underneath it the National Institutes of Health and a variety of caregiving agencies that deal with this situation. In that sense, it's the Secretary of Health and Human Services, and, of course, she sits on the President's cabinet, so has major input and oversight with that.
She then delegates it to a variety of organizations and agencies within HHS. So we deal with one of the primary divisions of HHS to administer this program, interacting, on the research side, with the National Institutes of Health. Again, you have CIHR, which would be the analogue for that. CIHR also funds one of your major research programs with regard to Alzheimer's disease, the CCNA, Canadian Consortium on Neurodegeneration in Aging. I'm proud to chair the scientific advisory committee for that activity.
I think the infrastructure is there, and I think the provincial — and again I'm getting out of my realm of knowledge here — regulation and authority with regard to care and services is probably stronger here than the in states and the federal government in the United States. So that would have to be orchestrated, but I would think that the HHS counterpart here in Canada would be most responsible for this type of a pan-organization.
The Chair: Mr. Berry, did you want to come in on that, specifically?
Mr. Berry: Yes, briefly. All of the structures that we have had have been Scottish Government-led. However, they are developed in consultation with as wide a range of organizations as possible, including the national dementia organization, Alzheimer Scotland. All of the strategies have also been formally endorsed by the governing body for all of the local authorities so that they formally buy into what we're doing around dementia.
On the health side, we have more leverage in terms of national targets, but what we are required to do, in terms of local authority buy in, is to seek their formal endorsement. So that is what we do.
But, yes, it's a Scottish Government-led strategy and governance approach but in partnership with everybody else across the policy landscape.
Senator Eggleton: Let me ask you both of you, starting with Dr. Petersen, what role does the Alzheimer Society, in each of your jurisdictions, perform? We've had the Alzheimer Society of Canada in to see us, and we've also had the Alzheimer Society internationally on a video conference. What role do they play in your country? Are they in a supporting role or a coordinating role?
The Chair: Dr. Petersen, did you want to add something to the previous?
Dr. Petersen: I think I can I do it in this comment as well. Thank you very much for that.
It gives me an opportunity to say that, in the U.S., this is a national plan, not a federal plan. So it requires, in fact, public-private partnerships. So the non-governmental organizations are absolutely vital. Here you have the Alzheimer Society, and I know Mimi Lowi-Young has spoken to you previously and done a superb job. I know her well, and I know that organization is very influential here in Canada.
In the United States, there are a variety of NGOs as well. The Alzheimer's Association, of course, is the most prominent one in the U.S. So it's absolutely vital that those non-governmental organizations are involved with the federal government. Many of the programs that I discussed in my opening remarks were really a culmination of a combination of both of them working together.
I must say, with all due respect, that the Alzheimer's Association, in the United States, has taken the recommendations I was mentioning that are not constrained, gone to Capitol Hill and said, "Folks, you passed this legislation. You asked us to do this. We've done it. Now we come back to you with these recommendations for increased funding.'' I think those kinds of activities have been successful on the Hill to say, "Let's increase funding for Alzheimer's disease accordingly.''
I think that these organizations — and there are a variety of them in the U.S — have all worked together to achieve these goals of increasing funding.
Mr. Berry: Alzheimer Scotland is an independent charity and a very significant player within the dementia field in Scotland. We have built up a very strong working relationship with the organization over the last few years. Of course they remain entirely independent and have a campaigning arm and will still highlight and comment on failures in instances of dementia care. However, they've also been very productive in terms of developing service models, which we've then been asked to test within Scotland. Indeed, the post-diagnostic service model I mentioned earlier is based upon a model Alzheimer Scotland developed after consulting their 7,000 members across Scotland as to what would be a good quality and meaningful post-diagnostic service offer for those people.
They went through a process of developing that model. We then tested it in terms of the economics and applicableness of the model within this health and social care system.
That's an example of them going away, independently developing an initiative and then coming to us and saying, "Do you think this is worth testing?'' In that instance, we did that, and we adopted that service model. So that's an example of how we've worked together, but they are, of course, entirely independent of us.
Senator Stewart Olsen: I do have questions for both of you, please, and I'll start with Mr. Berry.
Do you have an aging population in Scotland? I know, in some of our provinces, we have large aging populations.
Mr. Berry: Yes. I think it's firmly established that the challenge is similar in Scotland and across Europe. We're not unique in having that challenge, and we're not unique in planning for that. Indeed, that's the impetus for the integration of health and social care that I mentioned. The main impetus for that initiative is a recognition that, as more people get older, living a longer period of time with multiple conditions, including dementia, in many cases, but also including lots of other physical conditions that progress at different paces but impact upon people in a way that means we have to direct as many resources as possible to keeping people at home, keeping them safe but also keeping a good quality of life for them. That's really firmly in the mind of the Scottish Parliament and Scottish Government and has been for a number of years now. But we're not unique in having that challenge.
Senator Stewart Olsen: Thank you. Do you have a specific rural strategy? You're like us in many ways, and we have large rural areas. Have you addressed that, perhaps the way you diagnose and treat? Because it's difficult here, in many of our provinces, to get to rural areas and to provide good medical services. I'm just wondering if you have any progress on that.
Mr. Berry: What happens in Scotland is that the local areas develop their own local strategies. What we don't adopt is a one-size-fits-all approach because we recognize that there are differences in transport, accessibility, et cetera. A lot of the challenge is around providing and planning for services for those types of areas around telecare and telehealth solutions in terms of the practicalities of planning and engaging the people. Obviously, it doesn't substitute entirely for person-to-person care, but one of the initiatives that will be rolled out and is being rolled out in many areas of Scotland is an approach to innovation that takes account of some of the issues around accessibility, distance from services and also the kind of efficiencies around managing service capacity to meet those challenges as well. But they are locally generated solutions to these issues.
Senator Stewart Olsen: Thank you so much. Do you have any kind of registry for best practices in Scotland that people could go to and access themselves at home?
Mr. Berry: How do you mean exactly?
Senator Stewart Olsen: Say, a successful program. We have dementia cafés in Canada that are just starting. Do you have a place or a single website where you're collecting a lot of the good strategies?
Mr. Berry: If you're talking about a range of resources in the community in its widest sense, that's where Alzheimer Scotland would probably come into play because they have a website that contains all of their community-based services that they've developed, so you're talking about dementia resource centres, of which there are many and more opening all the time, and other resources that are provided by Alzheimer Scotland.
But, certainly, local authority websites and health board websites also contain a range of information around services, so that includes not only bespoke dementia services but also other services and supports that are on offer.
I should say that what we have in Scotland is called "self-directed support for social care.'' So, increasingly, people are actually able to take an option whereby they, for example, take their own budget for social care and plan their own spending. So it's something like going on a short trip or a short holiday in order to have respite or something like that. It's not dementia-specific, but a lot now is around individuals having more control over social care. But there are still resources available for them, of course, across Scotland.
Senator Stewart Olsen: Dr. Petersen, much the same questions, but I would like to start with the rural in the United States, if you have any information on that.
Dr. Petersen: It is an important issue that we address, and, as Mr. Berry said, we're trying to address it through telemedicine as one option that can reach people in rural areas. There are several research programs focusing on this, particularly in the northern tier of states in the U.S., so Minnesota, Wisconsin. In Wisconsin, in particular, there is a program called WRAP, which is the Wisconsin Registry for Alzheimer's Prevention, where they are engaging primary physicians in rural Wisconsin to engage in best practices, as well as research programs through the University of Wisconsin.
I think that's one aspect. Social media, trying to leverage social media with respect to rural areas.
This program I mentioned, Dementia Friendly America, is meant to go out and institute these programs in very small communities. There's a downloadable toolkit that's accessible to anybody at no charge, to begin educating your community and how you may establish some of these practices for care of people with Alzheimer's disease.
It is a challenge; there is no doubt about it. But some initiatives are being undertaken at present.
Senator Stewart Olsen: That's helpful. The other question that I do have is you've done a lot of work on the high level. We've heard the high-level things. Just a little brief on what's happening on the ground. Are you seeing, from your awareness campaigns, more success as people become more accepting and understanding?
Dr. Petersen: I think so, but the data here are softer than you might imagine with regard to increasing awareness. It's much more on the lips of people now with regard to recognizing that this is such a common issue that if you do a "raise your hands'' around any kind of room, you'll find a significant number of people who are touched by this disease in their family, friends, neighbours, et cetera. So I think increasing awareness.
On the other side of the coin, in the U.S., there has been a movement toward primary care physicians now including a mental status component to their annual visit. When people come in who are of Medicare age — this is primarily a Medicare and Medicaid, 65-years-old-and-older type of care — there is now what is called the Medicare Annual Wellness Visit. That is part of CMS. Physicians are, in fact, reimbursed for complying with components of that — basic vital signs and all that.
The Affordable Care Act has now introduced a cognitive component to this assessment. That's the good news. The less-than-good news, I think, is the fact that the uptake on this has not been as ambitious as we would like. And this may be our fault, because we say, "The law says do a mental status evaluation.'' Okay. How do I do that?
So I think there are several activities. The American Geriatrics Society in the United States has undertaken this charge to help the primary care physician with how it can be done: What are some of the tools out there that will help me do this mental status and cognitive evaluation? Then, importantly, what is the next step? If this person scores here or there, what do I do with it? That's the work that still needs to be done to help them.
But I think overall awareness is increasing.
Senator Seidman: Thank you to both of you for being here. I'm really bowled over, because you clearly have, in both your countries, well-developed, long-standing strategies with built-in regular evaluations.
A national strategy is a big idea, and it can be very diffuse. You've both described structures, and I'd like to dig deeper into the structures, because I think, as you both said, trying to understand accountability, responsibility and actually achieving one's mandates are really important if you're going to have a strategy that succeeds.
I will start with you, Dr. Petersen, please. You spent a lot of time at the very beginning describing a structure that I'd like to dig a little deeper into, especially since you say that when you look at whether your national plan has been effective, you say federal agencies began communicating for the development of the plan, whereas previously they had operated relatively independently.
We have all heard about the silos and the silo problems. Let's go back to your structure, if we can, and I'd like to know more about the advisory council and who is on it, how it is designed and who it is responsible to. In a very concrete way, something about the structure, please.
Dr. Petersen: The advisory council is comprised of about 26 people, half federal and half not. On the federal side, they are the representatives of agencies involved with Alzheimer's disease: NIH, the ACL, CDC — the agencies that are involved with Alzheimer's, delivery of services, care and research on the federal side.
On the non-federal side, there are six categories of individuals with two persons in each category. Care providers, carers, state agencies, research individuals and voluntary health organizations are all represented on the non-federal side.
The committee itself then is divided into three subcommittees: one for research, one for clinical care, and one for long-term services and support. Those three subcommittees meet quarterly as an overall advisory council, face to face, in Washington. During those quarters, the subcommittees get together to deal with problems specific to their particular domain, realizing there is a lot of overlap in all three of those committees. Nevertheless, we've tried to allocate the questions and issues.
So the three subcommittees meet periodically, deal with their issues and come together. For example, with regard to the recommendations I mentioned that go forward to the secretary of HHS and to Congress, each of the three subcommittees will generate its own recommendations for their particular areas of interest. They will discuss them and present them to the overall committee, usually at the April meeting. The overall committee will discuss them and say, "Yes, that's good. How about tweaking this one? Do this. Do that.'' Ultimately, they decide on a single set of recommendations that is a compilation of the recommendations from the three subcommittees. We vote on them and send them forward.
That's the nuts and bolts of how the committee operates. It is responsible to the secretary, primarily, since she develops the plan every year — her staff develops the plan — but also to Congress. As I say, we send the recommendations directly to Congress, and Congress has to deal with them one way or another.
So we're mindful of the various audiences that are using these recommendations.
Senator Stewart Olsen: And then how does it translate out into practice?
Dr. Petersen: The recommendations go to the secretary, and the secretary and her staff will revise the plan annually based on what's been happening on the federal side since last year and what the committee is recommending be put into the plan, if it can go in the plan. Some of the things I was saying earlier cannot go in the plan, because "we need $2 billion for research.'' Well, the federal government can't just do that, by law. But we can ask that.
The secretary's staff takes the combination of our recommendations that they can incorporate into the plan, and they take other input from federal agencies, and put that together for each year's plan. It's revised each year. Now the 2016 plan will be out in probably another month or so.
That's the process by which the recommendations are incorporated into the plan.
Senator Seidman: Then it's a private-public partnership in order to ensure this gets integrated into regional and community; is that correct?
Dr. Petersen: Yes. At that point, the federal government, through its agencies, will do what it can, but the non-governmental organizations will also incorporate some of that into their strategic plan going forward, and hopefully get together and try to effect these.
Again, I'm a clinician, but I'm also a researcher, so I'm more familiar with the research side of the house that the non-governmental organizations get together with the government to hold these summits and try to actually take these recommendations and put them into action.
It really is a combination; it's not just a federal plan.
Senator Seidman: How do you do the evaluation ultimately of whether the recommendations have been successfully implemented?
Dr. Petersen: Good question. Each year, the secretary's office, because we have drilled these down to make them into — in the appendix of the plan itself, it will say for item 3.C.2 here is the agency responsible for that, and here are the action items we want to see out of that. Next year, we will go and say, "Did you do it or not?'' If not, that's important, because we'd like to do it but we don't have adequate funding. Great, then that's our job to go to Congress and get funding by saying that agency would like to have completed this activity but couldn't because of insufficient funding.
So there's a scorecard. On the research side again, I was mentioning the research summits, which go to recommendations, which go to milestones. The milestones are very specific. We can look at the milestones and determine whether they've been accomplished in the past year or so.
Senator Seidman: In your opinion, does the government ultimately have to be in charge in order to ensure that the plan is well integrated and carried out?
Dr. Petersen: I think so. I really think the federal government has to play a key role. They are the largest sort of oversight organization and the funders of many of these activities. The government really is necessary.
Senator Seidman: That's really helpful. Thank you. I do have a question for Mr. Berry. Can I ask it now?
The Chair: Put one forward now, and then we'll put you on the second round.
Senator Seidman: Mr. Berry, I'd like to ask a question about structure, but I would like it to be more specific. In your submission to us, you talked about challenges, and one of the things we can do is learn from your challenges, because you're so much more advanced than we are in this business of a national strategy.
Under challenges, you say we need to do more through the new integrated joint board infrastructure to support locality planning and redesign of dementia services. Then you go on, under priority proposals, to say working collaboratively with the new integrated joint boards to support locality planning and a redesign of dementia services.
I'd like to know, if I can, about these integrated joint boards that you talk about as so important in how to manage this program.
Mr. Berry: Integrated joint boards are legally established structures that came into force in April. They have strategy responsibility, as I mentioned earlier, to pull health care resources together and to plan locally for their dementia populations. It's very much a local-level devolution of power in planning dementia services.
What we have nationally is a national governance structure. We have elements, such as the post-diagnostic target I mentioned earlier. What we have really got to do now, now that these new statutory bodies are in place, is develop a relationship with them to see how we work best together so that the health and social care elements can be balanced out.
A lot of that is around harvesting national data around dementia, taking that to integrated joint boards and showing them the benefit of investing in dementia services, for example, in their local area, to show the better outcomes that they can get based upon data.
Senator Seidman: One of the complications in Canada, of course, is that health care is a provincial matter, and every province develops its own structure in the delivery of health care.
You say the national government has to develop a means of communicating with these integrated joint board infrastructures, at the local level. How do you see yourselves doing that?
Mr. Berry: I think we're probably still at the early stage of that because they have huge demands in terms of priorities, not just dementia. What we need to do, and are at the stage of doing now, is to develop an appropriate relationship with all integrated joint boards so that we can pursue the dementia agenda with them in terms of our understanding of the priority of it and our understanding of what outcomes we're seeing nationally through data that we are collecting nationally and then translate that into arguments and discussions with integrated joint boards around dementia. But you're right; they do have the local power to plan for the dementia services. So it's going to be an interesting relationship.
Senator Seidman: Okay, thanks. I'll come back to you on the second round.
Senator Frum: Mr. Berry, I'll start with you. My colleague did a good job of the big picture. I just want to drill down on two specific parts of the Scottish plan. The first is your point that in 2013, the Scottish Government introduced a world-leading national post-diagnostic service for people newly diagnosed, in which people receive a minimum of a year's worth of person-centred support.
Do you have a costing on what specifically that amounts to and what the general cost of that is per person, per case?
Mr. Berry: You mean in terms of planning the services?
Senator Frum: Right. For each case, do you have any sense of the cost of that?
Mr. Berry: Well, in 2012, we actually worked with four areas in Scotland to cost model that. So we developed a model whereby you could put in, for example, variables such as a case load and a staff discipline. We didn't specify which member of staff had to deliver the service. For that reason, it's very much a local issue as to how you plan and cost that service. For example, within the model we developed, they could put in a health professional at a certain grade or a community psychiatric nurse at a certain grade. They could marry that across with a caseload and then run the costs. We didn't specify how much it would cost, and we don't actually quantify that nationally. But we do provide the tools whereby they can do it locally.
Senator Frum: But a year's worth, does that mean a weekly visit, weekly contact, or daily or monthly?
Mr. Berry: It's not envisaged to be that type of volume of contact. It's really determined by the person themselves and their family. For example, the key to it is to develop a relationship between the link worker and the person with dementia and their family. So the year is recorded from the first substantial contact between the family and the link worker. Maybe the family does not wish to engage at all, at that stage, with the link worker, in which case they'll withdraw and maybe contact them again in two or three months. But it is really very much a holistic process. It is to develop that relationship over a period of time so that the link worker can then introduce elements, depending upon the resilience of the family, for example, how they feel emotionally, how they feel about the illness, how much information they want to get and at what time they want to get it. So it's about building a relationship with the family, and it's a person-centred model, not a clinical model.
Senator Frum: So it's more of a safety net that you can go to if you need it rather than a highly interactive support.
Mr. Berry: It's both. It depends entirely upon the person and how they feel about the illness.
It could be very interactive. People could ask for a very high level of intervention, depending on whether they want to find out as much as they can about the illness and how it will impact upon them, where they can get help for depression or the trauma of getting a diagnosis, for example, where they can get help with peer support or community support. Some people may not want any of that. Some people may not feel they're ready to get any of that. The level of interactivity with a link worker is determined by the person.
Senator Frum: I wanted to ask you just quickly because this is a preoccupation of ours in this country right now. We are working on end-of-life legislation here, and I'm just intrigued at the idea because you say that part of the plan has an enhanced focus on dementia palliative and end-of-life care. Can you just quickly explain how that is different from non-dementia end-of-life care?
Mr. Berry: Well, I suppose what this means is that a lot of people who are in the palliative or end-of-life stage with dementia probably, a proportion of them — we don't know what proportion it is — will have fairly well-advanced Alzheimer's disease, for example. That may manifest itself in stress and distressed behaviours, for example. So it may be that there's currently a proportion of specialist palliative care workers who do not have that level of knowledge around how to manage stress and distress — and vice versa; there may be people who work at an advanced level in specialist dementia units who do not have the end-of-life care specialty.
It's really about how we address both of those issues to make sure that as appropriate a proportion of people as possible have that expert knowledge around dementia appropriate to their role. That's the sort of issue we're going to be getting into.
Senator Frum: That's great, thank you.
Dr. Petersen, just quickly, I'm very intrigued by the mathematics of your presentation and excited that you are able to project that you could effectively prevent and treat Alzheimer's by 2025 if you had $2 billion a year annually. We're nine years away. So $18 billion and we have a cure? Does it work like that?
Dr. Petersen: Actually, senator, that was a contentious issue as to where you put the stake in the sand. Some people wanted 2020, and, obviously, individuals who have the disease now, who are impaired, can't wait until 2025. So there was that versus reality. Is the scientific community really going to make a breakthrough or accomplish some feats that will actually modify this disease going forward?
So 2025 was sort of arbitrarily decided on. At the same time, we felt that we needed to put a stake in the ground. We just can't let it go forever.
So why $2 billion? Did we pull that out of the air? Well, cancer gets $5 billion to $6 billion a year, appropriately. Heart disease gets $2 billion to $3 billion. HIV/AIDS gets $3 billion. Okay. So where are we? Actually, we put together a group of scientists and asked them the question: As difficult as this would be, what would it take, in your area of endeavour, to make significant accomplishments that would have an impact on this disease to prevent or cure the disease by 2025? With that activity, the group came together and sort of ended up with a ballpark figure of $2 billion.
Interestingly, in this year's recommendations that are in the process of going forward to the secretary and Congress right now, we've altered that $2 billion, because that exercise I mentioned, with the scientific community, took place in about 2010. So if we get to $2 billion by 2020, that recommendation is going to be 10 years old.
We've now taken a dynamic aspect and tied it arbitrarily to 1 per cent of the care budget, so how much money is spent annually in the United States caring for people with dementia. This year it comes out to something like $230 billion to $240 billion, and 1 per cent of that would be $2.3 billion or $2.4 billion. It seems like a reasonable number but also adds a dynamic aspect to increase it.
It was scientifically motivated, and we hope that if in fact that much is invested we will make significant progress towards this disease.
Senator Frum: Does Canada have a similar formula?
Dr. Petersen: Actually, we stole the 1 per cent from the G8 summit that was held by Prime Minister Cameron when he was president of the G8 in 2013. The last summit that he put together in December 2013 focused on dementia. Out of that, a colleague of mine at University College London and I wrote a paper for The Lancet saying it would be nice if countries would invest 1 per cent of their care budget toward research. It seems like a good investment. If in fact it's effective, it will pay back in spades sooner than later.
Senator Nancy Ruth: Mr. Berry, I want to make sure that I heard you right. You said that Scotland created an act of Parliament to support carers. Is that correct?
Mr. Berry: That's correct.
Senator Nancy Ruth: Can you tell us what is in it, why you did it and what the result is?
Mr. Berry: I can certainly do that, yes. It was passed by Parliament in February, and it places a duty on local authorities to provide support to carers based on their identified needs which meet the local eligibility criteria for social carer eligibility.
It requires each local authority to have its own information and advice service for carers set out in statute; so it's a statutory requirement. It must provide information and advice on, amongst other things, emergency and future care planning, advocacy services locally and, importantly, how to maximize your income and to enable people to know what their rights are.
Something like income maximization is important because in a lot of cases people may not know exactly what they are entitled to in terms of support. Part of the statutory requirement is to make sure that every carer is getting as much support financially as they are entitled to.
Senator Nancy Ruth: It's a framework for the lower levels of government or districts, municipalities?
Mr. Berry: It's not a framework; it is now an act, so it has more power than that. There already have initiatives around those areas. The act empowers local statutory agencies to look to deliver those services, yes.
Senator Nancy Ruth: I'd like to ask you both more about the support for the carers.
Doctor, you talked about care and service training being culturally sensitive. I would like to hear more about it because it's a huge issue for Canada, which has a very diverse population and the need for carers to maintain their own health.
Dr. Petersen: Thank you very much, senator.
Diversity is an important aspect of our overall strategy. In particular, one of the members of the council is from the agency that deals with Indian country. Many of these programs have been translated into culturally sensitive considerations of Indian country and the Native American population in the United States. Similarly, we know that within the African-American, Hispanic and Latino populations, the rates of dementia are higher, Alzheimer's disease included, in some of these communities. The emphasis has been to make all these materials for training for the carers sensitive to the individual populations.
Mr. Berry: In terms of benefits to carers, the post-diagnostic offer that I mentioned earlier is equally as beneficial to carers as to people with dementia, if those people have carers living with them.
For example, before we introduced this service offer, when families were affected by a loved one, like getting a dementia diagnosis, they would probably go away without any particular support for a long period of time. And with the eligibility criteria being quite strict now, in terms of social care, people would probably go away before we introduced this, and individuals and families without any obvious access to proactive services to help them understand the illness and develop a better quality of life, and to adjust to a loved one's illness, whether it's a husband or wife or a partner, for example, or any type of family arrangement.
Again, coming back to the relationship with the link worker, the carers and families would be central to that as well. It's equally beneficial to them so that their loved one can have a person who travels throughout their care journey with them after that year, and that we expect that the carers would be involved in a very profound way in developing that plan with their loved one.
Again, the link worker is key. The trigger for that is simply getting a diagnosis of dementia, whereas before you wouldn't have had that type of service at all, and you may have nothing for two or three years after diagnosis.
Dr. Petersen: One more comment for Senator Nancy Ruth about the carers in the national plan. That is an important aspect of it because for every person with dementia or Alzheimer's disease, there are estimated to be two or sometimes three carers, so the magnifying factor of this disorder is not trivial.
Of course, the health and well-being of the carer is vitally important for the care of the individual with the disease. A great deal of research has shown that the stress on caregivers can be deleterious to their health as well. The issue of respite care and things of that nature is very important. A big part of our plan is also focused on the carer.
Senator Nancy Ruth: Most of our focus has been on older people with dementia. Are there any differences in the caring of younger people with dementia?
Dr. Petersen: While you're right, the biggest risk factor for many of these disorders is age, a significant proportion of individuals develop these diseases at a younger age, and this has an even greater impact because of loss of earning power of those individuals.
There has been some legislation in the United States now that focuses on individuals of a younger age so that they can get support and care rather than having to wait.
There was a mandated waiting period before you would be eligible for services and support. That now has been eliminated such that if people are diagnosed at a younger age, a working age, 50, 55, with diseases, they are eligible for care support through CMS.
There is a focus on that. Some of these other dementias, like frontotemporal dementia, are actually more prevalent in younger people than in older people. It adds an element of amplification because these individuals still have families to care for, children who are school age and the like. There has been an emphasis on recognizing that aspect of the disease in younger people.
Mr. Berry: In Scotland, we have about 2,500 under age 65 with dementia. Regardless of how old you are, you're entitled, when you get newly diagnosed, to exactly the same service offered in Scotland. So you'll get that post- diagnostic service because it is person-centred, and it is guided essentially by the person with dementia. It will take account of the age factor and personal circumstances, the fact they may have families they are raising, employment, et cetera.
The whole point of the service is to flex around that and to see what's important to the family and the person that's being diagnosed at a younger age, again to understand the illness and to make some different steps or challenges around how they remain connected to their work colleagues and friends and family, how they get supported to stay in their job with reasonable adjustments. Again, how they access psychological support and support for anxiety, depression or trauma or anything associated with the illness and getting the illness at a young age, which may be very isolating and confusing for them.
Again, what's key to the service offered in Scotland is you are entitled to it, regardless of how old you are, and it will be flexible around your individual needs.
Senator Nancy Ruth: Is additional financial assistance provided to those who are, say, 50? If these are working people, it's often that their spouses would also be working, their mortgage might not yet be paid off and so on and so forth, so there could be a loss of financial assets — the pension isn't increased and so on. Is there a financial benefit to these folk?
Mr. Berry: In Scotland, we have free personal nursing care for people over 65, which is unique in the U.K. But for people under 65, there will be the working-age benefits that apply. They are not dementia-specific but do apply according to people's registered disabilities. So they do get support through that free personal nursing care.
I understand it may be extended based upon people's financial resources rather than their condition. Currently within Scotland the disability benefits would apply.
Dr. Petersen: Similarly, in the U.S., if somebody is working and develops dementia, then they are eligible for their short-term and ultimately their long-term disability programs. They fill out a great deal of paperwork and, yes, this person is permanently disabled because of their neurologic condition.
And then, as I was saying, there are Centers for Medicare & Medicaid Services, which is usually 65 years and over for Medicare, but Medicaid if you're younger because of a disability. And that's the change in the law, to make these individuals immediately eligible for that.
Senator Merchant: I apologize for arriving a little late. I chair another committee across the way on the Hill.
I have some questions of Dr. Petersen, especially about the funding and how you arrived at your funding model. You gave us an indication of how you arrived at the $2 billion, for instance for cancer, and you referenced that.
When you asked for $2 billion and only got close to $1 billion, did you decide as a committee where that money will go?
Dr. Petersen: We do not get into those decisions as a committee. We watch the National Institutes of Health. So the committee recommended the summits be held. The summits then determined where the funding needs to go in the field, where are the gaps, what progress is to be made, what are the challenges out there. We then would charge the National Institutes of Health to do that assessment of the science in the field and where the money needs to go.
That has been fairly effective thus far insofar as these increases in funding have arisen within the system; the National Institutes of Health has been anticipatory of that, putting out funding announcements that if we get an increase in funding here are the areas we need to get additional grants in. The scientific community has responded with a wealth of grants in those areas, and bingo, the funding becomes available, and then it's able to be applied appropriately.
The committee itself doesn't get into the nuances of the individual science; we sort of charge the appropriate people with that responsibility.
Senator Merchant: Mr. Berry, how do you work with your funding? I know your population is different, and I don't know what the population of Scotland is. I would like to know how across the globe people are able to arrive at a sum that they deem they need to make for progress on this disease or condition.
Mr. Berry: Yes. I didn't understand whether you wanted me to comment on funding for research or funding for services.
Senator Merchant: For research and services. Your total budget and what you have dedicated.
Mr. Berry: For services, we don't ring-fence money for dementia. The NHS gets an overall figure. There's an overall figure for social care, but there's also additional money now for social care of around 250 million per year. It's estimated in Scotland that the overall spend per year on dementia is about 2 billion. If you factored into that the cost of unpaid care from family carers, you could probably double that. That probably excludes the cost of unplanned hospital care when people with dementia go in for falls or fractures or burns.
You're talking probably, in terms of statutory spend, about 2 billion as an estimate. What we don't know is how much is recorded locally as dementia spends. If somebody gets an aid or an adaptation for their house because of dementia, it may not be recorded as dementia. We don't know that all dementia spending is getting accounted for. Regardless of that, we don't quantify that nationally.
In terms of research, we fund through our Chief Scientist Office about 480,000 per year for clinical research. Within Scotland over the last few years there's been an expansion of academic institutions interested in clinical and social research for dementia, in particular developing research into practice initiatives for dementia.
Our approach to research is that we obviously see it as a global initiative and that Scotland's playing its part in that, and we're obviously looking to maximize the impact of research in Scotland. Part of that is connecting across the U.K., across Europe and the globe in the post-G7 context. Clinical research in Scotland from government is around about 486,000 per year, but obviously there's other money coming from elsewhere, including other parts of the U.K. and into Scotland, as institutions in Scotland attract investment over and above Scottish Government investment.
Senator Merchant: I have another question. We have been told in our study that a lot of the people that have this condition are women. Maybe this has something to do with the fact that life expectancy, if it is age-related — I know it's not strictly an age-related issue but it is largely — if the life expectancy of men and women is different.
Are you aware of specific research which gives more insight into whether women really get dementia in a disproportionate manner or whether this is something that is related to longevity?
Dr. Petersen: It's a very relevant question that's being investigated actively right now in the community.
As you suggest, Senator Merchant, the leading risk factor for Alzheimer's disease is age, and women do live longer, so there are more women with it than men. However, that's not the total answer. The thinking is there is a biologic predisposition as well. Whether that's hormonally related or genetically driven is unclear.
One of the biggest risk factors for late onset Alzheimer's disease is a genetic feature called apolipoprotein E. It's a normal protein, we all have it, and it carries lipids around the body and comes in three varieties, E2, E3 and E4. It turns out that E4 is overrepresented in Alzheimer's disease in anybody. The way that plays out in women versus men is different. In fact, there may be genetic predispositions of being a woman that predisposes you to certain risk factors for Alzheimer's disease that are different from men.
In fact, at the National Institutes of Health, when we put in our grant applications, we have to specifically say what are the sex implications of your particular study. We do a lot of work at the Mayo Clinic on biomarkers, imaging studies trying to pick up the proteins in the brain that are related to Alzheimer's disease. Do those proteins appear differently in men than women? We have to investigate that. So I think we're learning a great deal about the sex differences, and it's a very important one.
It may also imply that women may respond to treatment differently than men and vice versa, so it's a very important issue.
Senator Raine: Thank you very much. It's almost overwhelming to see the intricacies between research and on-the- ground care. I'm going to focus my remarks on the care side of it. I am a caregiver for my sister, who has Alzheimer's, so I'm a bit familiar with how it works in Canada.
My first question would be for Mr. Berry. In your presentation there's an acronym, COSLA. Can you tell me which body that is?
Mr. Berry: That's the Convention of Scottish Local Authorities. That's the governing body for all the local authorities in Scotland. That's the overarching umbrella organization for all of the local authorities.
Senator Raine: Those are all kinds of authorities, including hospital, education, et cetera?
Mr. Berry: No. Local authorities are literally the 32 that I mentioned that are co-located with health boards. You have 14 health boards, which are obviously larger areas, and then some health boards will have two local authorities; some may have three or one. Essentially, local authorities are the social care arm of statutory services.
Senator Raine: You mentioned that they have been operating on a time-and-task-based home care model, and the desire is to move to a model that focuses on outcomes. That would be a challenge because they would already be set up to budget one way, and now we're looking at a different way.
Mr. Berry: I think it is a big challenge. It's not entirely my area, but I think it's in the early stages of discussion at the moment. You're right, we have a system whereby everything is quantifiable in terms of carer home services, for example, and you have 15-minute visits, half-hour visits. The intention is to fundamentally move away from that approach so that you get visits that are based upon the person's needs and desired outcomes. How you square that circle, I don't know at the moment, but that's definitely the ambition, the intention over the next phase of government, to try and move away from those structures.
Senator Raine: When I look at care needs in Canada, we all know that the longer you can keep people in their own homes, even if you have to have extra outside help coming in, the better it is. Sometimes the person who comes in is coming in to do maybe medication, but a housekeeping task or something like that is also needed. It becomes inefficient because care is bigger than just one small component. The challenge is to work so that somebody can come and help out and multi-task, if you like. Is that being looked at?
Mr. Berry: It's interesting you say that. Actually, the NHS, we had an actual case study which looked at this, where somebody had actually gone into someone's home and they've got tasks written down to fulfill when they go in, but when they come into the person's home the situation is more complex. What the person did was took extra time to try and deal with the situation as they found it as opposed to what was in their time sheet.
What we're trying to do is get towards a situation where people have more flexibility as to what they do in the person's home and they're not constrained in the same way as they are at the moment by time and task structures. As I said, that's still in the early stage of discussions in terms of how that can be achieved. I think we are being challenged to move away from everything that's quantifiable and measurable in terms of the time people spend delivering services.
Senator Raine: We're looking in our country at a shortage of care workers in all areas, in nursing home facilities and also for home care delivery. Is that also happening in Scotland?
I notice that you are looking to pay a living wage. Can you describe the impact of the wages being paid on the quality and the accessibility to enough people to do the caring?
Mr. Berry: Scotland, like every other country, is varied in terms of areas of affluence and areas where people are less affluent and areas where there are a variety of jobs and incomes. There are issues in some parts of Scotland where it's very difficult to attract people into the care sector because there are a lot of other attractive options for employment. That's one of the reasons why a living wage is being implemented as one of the levers to attract people into the care sector.
It's not the only lever. Another element is people's sense of fulfillment in their job and pride in their job. And also the more ambitious element is to see how that job leads into some kind of career structure. That's more difficult. For example, one of the elements is to try and be even more flexible in how you mix care workers with nursing staff, for example, so that people get a range of experience in terms of career opportunities.
I think it is a challenge. One of the big-ticket approaches from the Scottish Government is to implement a living wage partly to address that challenge that in some areas they're not able to attract the right volume of people into the care sector.
Senator Raine: I've noticed in the care for my sister, who is in a very nice residential care facility, that a tremendous amount of work needs to be done between three o'clock and five o'clock when you are moving people from their rooms to the dining room, and it's also an opportunity for them to be taken out to get a bit of fresh air, things like that.
Do you have any programs that engage with local high school students to pay them to come in for a few hours to help out? I would think that might expose them to how wonderful these old people are, which they may not know.
One of the tragedies of a system is where you put people away in a house, in a home, and then they're out of sight and out of mind, and yet they're fascinating. Are there any programs in Scotland around that concept?
Mr. Berry: Many things are happening in Scotland across the country which broadly capture dementia-friendly communities or enabled communities — for example, what you mentioned there, intergenerational work. As an example, people in Scotland can get trained as dementia friends now throughout some of Scotland or they can look into dementia befriending or they can join their local dementia-friendly community. We also have other funding available through a charity for dementia-enabled community work.
I'm sure there are examples across Scotland, and we could source them, where there's a great deal of work done to make residential care much more public facing.
Obviously, it's still somebody's private home, so it's a delicate balance, but I do think there are a lot of initiatives now to innovate in terms of how close care homes and residential care are to people's local communities and how visible they are to try and break down a lot of the barriers around dementia.
Senator Raine: Is there a system where there is a budget to pay high school students minimum wage? A lot of the students need the pocket money. Many schools need to get volunteer credits, and volunteer work in the community is part of our curriculum in many areas. The shortage of care workers is going to limit quality care.
Mr. Berry: Volunteering is one thing. As I mentioned, there are loads of examples of people volunteering.
In terms of paid support, again I come back to the living wage issue. A lot of people will be attracted to working in care for a certain period of time for maybe a certain period of their life, but hopefully the living wage will attract a wider range of people to consider that as an option even for a shorter period of time. One of the major solutions we'll have going forward is higher wages for people working in care homes.
I know that's not addressing your specific question, but I don't think there is a particular initiative around targeting high school children to give them a salary to do that, but there are other things that are similar.
Senator Raine: We'd probably need to call it an honorarium. Thank you very much. I appreciate your input.
The Chair: Before I go to the second round, I want to clarify a couple of issues.
Just in this last set of questions, all countries have great concern about the vulnerability of people in this category, and free access to them by students or any other volunteer is a major issue with regard to managing that and the liabilities around it. So it's not as simple as normal volunteering kinds of activities.
Dr. Petersen, I'd like to make certain that we've got it clearly when you talked about the budget and you had influence that went to the National Institutes of Health as part of your plans and recommendations. Is that budget focused on dementia? It doesn't just go into the general health spending of NIH but is required to be directed to dementia studies?
Dr. Petersen: Absolutely. It comes directly from Congress that this is money to be allocated for research in Alzheimer's disease and related dementias.
The Chair: I do have another question, but I'm going to hold that until my colleagues have had a second round. I'm going to ask them to be focused.
Senator Eggleton: In our hearings over the past few months, we've heard about various social support programs promising programs and promising ideas. You mentioned one of them, Dr. Petersen, dementia-friendly communities. One of the programs we heard about in that regard is Blue Umbrella, where a business opened up a Blue Umbrella and it's on display to indicate that it is a friendly place for people who have dementia difficulties.
We also learned about Memory Cafés and social integration of people that is apparently a great deal of help, particularly if music is involved, and even dementia villages that come out of the Netherlands.
I wonder if you have experience with these kinds of ideas. Just tell us briefly how they work, and if you have anything to add to the inventory that we've been collecting of promising ideas and social support programs.
Dr. Petersen: Yes. Thank you, Senator Eggleton.
Actually, I've toured in the Netherlands one of their villages as part of membership on the World Dementia Council, and I find these very appealing. They indicate that this has been a very successful venture for them and has enhanced the quality of life for the residents and family members who come to visit with them.
Whether that's affordable on a larger scale, I'm not certain, but it certainly has been effective.
Again, without belabouring this Dementia Friendly America notion, I think this really has legs in terms of integrating individuals with these conditions into the communities such that the Blue Umbrella notion is very positive because I think to keep people in the community functional for a longer period of time is good for them, good for the families, and good for the economy as well.
In our community, we're one of the communities in Minnesota that has adopted this problem. Examples were given of individuals who have mild cognitive impairment or memory impairment; they're on the road but not completely disabled at this point in time, and they're going to a health club. We think that exercise is good for everybody, but they get a little confused on a machine, and having the staff at that club aware of that and say, "Hey, Joe, how are you doing? Good to see you. Remember now, we press this and we do that,'' and in a non-threatening kind of environment.
I think those kinds of manoeuvres and the Memory Cafés are very positive in terms of enhancing the quality of life.
You mentioned the music therapy programs. Several of these have become quite popular in the U.S. in various programs where, particularly later in the day, four o'clock or five o'clock in the afternoon, people tend to get confused, so-called sundowning. Unfortunately, for better or worse, sometimes medications are used, and sometimes people get agitated and confused, and there are a variety of explanations for that. But music therapy has been a very useful technique in that setting such that people would put on earbuds with an iPod with music of their genre, and in fact that has a calming effect, a reminiscing effect for individuals, and obviates the use of medication.
I think those kinds of strategies can and should be expanded and employed in this kind of situation.
Mr. Berry: I would maybe talk specifically about music therapy as well and just explain it and use it as an example as to how we would see those types of options and services developing in the future.
I think there are two things. Some families, when they face the prospect of dementia or somebody who has been diagnosed in the family, they lack information and knowledge around the illness. It may be that they're obviously resourceful and they're willing to do a lot of things for themselves, and one of the things would probably be to look into things like developing a personal list of music that's loaded onto an iPod for a loved one.
Alternatively, when dementia develops and they get into the stage of the illness where they're eligible for social care support, again going back to the self-directed support, people may potentially choose the option of purchasing a more advanced music therapy. I'm using that as one example that we will probably see in the future — a combination of dementia-specific supports in the community, dementia-inclusive support but also more individualized supports and people taking more control over what they actually utilize themselves to alleviate some of the symptoms of dementia for a loved one and helping them to do that.
Senator Seidman: My question is for both of you. It's about three potential elements of a national strategy. I'm going to list three items, and you could tell me whether you would consider them of benefit and how you see them being integrated into a national strategy. One is a data system, the second is education and training, and the third is knowledge translation, how you translate best practices.
Perhaps I could start with you, Dr. Petersen.
Dr. Petersen: Good points, all three of them.
Absolutely, I think a data system, as Mr. Berry alluded to, a range of figures of diagnosis, the number of people, and that varies with regard to what is the prevalent figure of the disorder in your particular community. Data are absolutely essential not only for knowing what the scope of the problem is but also for tracking progress. If one of your goals might be we want to increase the number of people being diagnosed with the disorder, who deserve the diagnosis rather than going undetected in the community, you have to have baseline figures and data.
I think that data system, call it a registry or whatever you want, is absolutely essential.
The notion of education and training is vital, and I think both Mr. Berry and I have emphasized in our countries how important it is to get people out there.
For example, costs to the health care system. Every time a person becomes confused about this, that or the other thing, do I need to take them into the emergency department or is that part of the disease? Well, they had that medication or they have a little bit of a fever and that's causing the increase in confusion.
So education for the patients and families such that they know what is part of the disorder and what's not is important. If I have chest pain, I probably need to go in because that's not part of Alzheimer's disease in general; I may have another problem. So I think all of those implications for families and carers.
Regarding knowledge transfer as part of our national plan, we have a provision that the research not just be kept in the ivory towers but asking what it means for the primary care practitioner in the field. So if you think this is a risk factor for this disease, how do you translate that into primary care practice to try to get them to reduce that risk factor, because that will be elements for the disease. Translational elements of the research are essential.
Mr. Berry: Yes. Data is absolutely essential to our approach to dementia. We have national data and diagnosis around post-diagnostic support. We have a national dementia benchmarking framework, as well. We have the national infrastructure that underpins that, and the analysis and expertise around data harvesting and analysis. Absolutely, that's important.
I want to say, though, that anecdotal testimony always has much more emotional impact, but I think the two things go side by side. We have to really have a very strong approach in terms of data, ultimately, and evidence to convince people, for example, service commissioners and managers, to invest in certain options around dementia. That remains a massive part of what we do.
I mentioned before that we have a national workforce strategy and national funding. That's really a spine throughout dementia policy. That seems to be essential to us.
In terms of knowledge transfer, I think that relates to the workforce work because, as part of that, we have the Dementia Managed Knowledge Network, for example. That's a website that is password-protected, I think, but in which services and staff share good practice among themselves. There are moves to make that even more accessible, as well.
We would probably be less prescriptive around sharing best practices because all implementation is local, and we wouldn't say this is best practice for you, necessarily, because it's not always translatable. But the first two are major imperatives for us.
Senator Raine: I'd like to ask both of you, what do you use as an early diagnostic tool? Is it done by general practitioners in their annual check-up? In Canada, we have the Montreal test, but I'm just asking what you use as your first screening tool.
Dr. Petersen: It's a good question, and an important one. MoCA, the Montreal Cognitive Assessment, has been popular in the field. It is an excellent screening tool. There are a variety of other ones out there. They all need to be validated, but they are things that we can provide to the primary care physician to allow him or her the option to ask whether any degree of cognitive impairment is present.
I mentioned the AGS, the American Geriatrics Society. It has done a review of the literature to help primary care physicians on what instruments are available free of charge — there are some that are copyrighted — but those that have been used free of charge in large-scale studies to indicate if there is some cognitive impairment or not.
There are no standards instruments — no "you do this, and this is it.'' I'm not sure there needs to be. But I think providing primary care physicians with these tools will help them make that diagnosis.
Early diagnosis and recognition are absolutely fundamental.
Mr. Berry: We use the phrase "timely diagnosis'' rather than "early diagnosis,'' generally, so we make a fine distinction; we say we want more people diagnosed earlier rather than later but not necessarily "early.'' It's about timely diagnosis.
In terms of diagnostic tools that are used, there are long-standing clinical guidelines in the U.K. and Scotland around dementia that clinicians will use when applying diagnostic tools. Also, family doctors will refer to specialist services for a diagnosis, particularly in earlier stages where it's more difficult to diagnose somebody.
As Dr. Petersen says, there is probably no standard tool, but there are clinical guidelines that do indicate which tools should be used according to circumstances and the potential for dementia to be diagnosed.
The Chair: Thank you.
I'd like to come back an issue that has arisen in different ways during the conversation today. Let's say those in the 40 to 60 age group who are working — family, careers and so on — and we have had testimony from people in that category who actually have dementia; we have had them here and had the benefit of them describing the shock when they're initially identified and then what happens immediately. I'm going to summarize a little bit of this and then ask a specific question to you.
In these particular cases, what often happens that leads to the diagnosis is an action that is just simply not the normal forgetfulness. They're in full life activity and all of a sudden they have to face the reality that they cannot continue in the profession that they're engaged in. We have had those in emergency care nurses, businesspeople managing creative firms and those engaged in major service industries such as accounting and so on.
All of a sudden, as of that diagnosis, their lives change instantly. One of the first things they identified for us is that there is no support group. It's immediately identifiable. As one individual said, "If I had had a stroke, there is an immediate program that deals with me, but with dementia, there is not.''
Second, their income situation changes almost instantly. You've all referred to going on long-term disability and so on. That occurs here in Canada, but long-term disability and lifestyle are not compatible.
I can give you the example of one of the nurses testifying before us. While she could not be entrusted to continue dealing with patients in the manner before, she felt there were many activities within the hospital circumstance that she could clearly have continued to contribute to and would have felt useful and would have had an opportunity to be part of society. But two things immediately stand in the way: the terms of long-term disability, which don't allow any kind of activity, and union rules around positions in highly organized activity areas.
My first question: Have either of you identified or come across any innovative program in any country that helps advise employers and communities with regard to trying to help these people make that adjustment from the instant demarcation into engagement in society in any way and with some ability to enhance the disability income that they're entitled to?
Dr. Petersen: This is a very important issue, and I must say I don't think I have a magic answer for that. It is a dilemma for individuals who are younger in age who experience these difficulties.
There are some early-stage support groups that are available, like through the Alzheimer's Association in the U.S. for people who are younger who experience this. They are not all that widespread, but they are available.
The work situation — adaptation to the person's disabilities — is an important one. I don't think there are standard programs available. The Mayo Clinic is a big organization, and we try to adapt to individuals on our staff — physicians — who actually develop these difficulties.
The other side, Senator Ogilvie — I thought you were going to mention the liability issue. If you have somebody on board who is cognitively impaired but involved in major decision making, is the organization now liable? The answer is yes. Our attorney friends will be at our doorstep.
Nevertheless, I think the work situation can be adapted. I'm thinking of one individual, a patient of mine — a younger individual — who developed a dementing disorder, who has been put into — I don't want to make it like a lesser status — a research capacity. This person is now handling and processing data from various sources and using the application within that particular research environment to accommodate his needs, keeping him going. It's checked; people are looking over his shoulder, and he understands that. That is so the veracity of the data is maintained.
But I think that is an unusual situation, and I don't think there are many of those programs. I'd be interested if Mr. Berry has some in Scotland.
Mr. Berry: In the U.K., we have the Equality Act. As you expect, employers are required to make reasonable adjustments for dementia or any other mental health condition. You talked about, for example, people being supported to maybe take a different role within the organization. That happens on some occasions, if that's possible.
In terms of the other issue — coming back to support for people generally when they are under 65 — there are many programs for peer support in Scotland through national dementia groups, although some younger people with dementia look for peer support from their own peer group. I think there are fewer barriers between older and younger people with dementia. They have a lot of the same cultural reference points, and there may be less of an issue there.
But if you're talking about knowledge of a job retention program for dementia, I'm not aware of one. It would be interesting to see if there are any across the globe, but I have not come across one. But there are job-retention programs for mental health, although I'm not aware of one for dementia.
The Chair: Related to this was how the individual with dementia is incorporated into the support programs that are already in existence within communities. One specific example: An individual identified with early onset dementia was capable of moving around in the community but not of driving herself to any of those activities. The particular community had a handibus, a program where those with handicaps — we normally think of physical handicaps — can be picked up at their homes and delivered to another location within the community.
When she approached the service to be included in that, having to go to medical appointments and so on, she was simply asked, "How far can you walk? Can you walk 100 feet?'' She said that she could, and then was told that she didn't qualify. In other words, she wasn't physically handicapped in that sense.
Are you aware of any other programs in existence to deal with persons having a handicap where there's been some way of recognizing that those with dementia should qualify for that? Again, I'll start with you, Dr. Petersen.
Dr. Petersen: To a certain extent, yes. I was indicating earlier that sometimes I fill out these disability forms. It is always, is it heart class 1, 2, 3 that you can't, because you can't walk exactly — or even for a handicap parking permit and that type of thing. It's all physical disability. But usually at the end, they will have something on these forms — at least the more recent ones — asking whether there is a mental capacity problem. That is where I write down "Alzheimer's disease; unable to do X, Y, and Z. No, it is not going to get better, and this is permanent.''
But to your point about transportation for handicapped, I can see where they will not allow you to use those types.
The other complication is that it's one thing to have a physical disability — can you physically get on and off the bus and walk 50 yards versus being capable of handling yourself when you get there. That's a whole other capacity issue that's different.
Your point is well taken that all of our services need to reconsider what these mean — on both sides — in terms of ability to accommodate them, but, at the same time, affording them a safe environment once they get to the other end.
The Chair: Right. I'll come back to that.
Mr. Berry: I would echo Dr. Petersen's comments. Theoretically in the law, people with a physical disability and a mental disability have equality, but often I would imagine in the latter case that people may not have the same level of common-sense understanding about something like dementia. As Dr. Petersen says, it's about assessing what some of the ramifications are in travelling from point A to point B.
We have the challenge, which we're addressing around the core dementia workforce, but other people working in a whole range of areas need to have better knowledge of dementia, because it will become more prevalent. Inevitably, sometimes people misinterpret their obligations under the Equality Act in the U.K., but we hope to minimize that as far as possible.
The Chair: Thank you. In that case, Dr. Petersen, I recognize the liabilities; however, if it's a handibus, if it's a transfer from home to a medical appointment and then immediately back, probably some adjustments can be made in certain areas.
Mr. Berry, there is a final question I wanted to ask you. There has been a report recently that the U.K. government is making a determining that it will create 10 new cities in a particular belt of the U.K. They are intended to take into account much of what we've learned over the last 30 or 40 years with regard to a number of social issues, including obesity and so on, to decrease the obesogenic environment — one part of the objective — but also to make them more accommodating to persons with dementia.
Has this reached a dialogue state yet in the U.K.? There was an announcement of an initiative intended, but I'm not certain how far it has progressed.
Mr. Berry: Because health and social care has devolved, I would expect that Scotland would take its own initiatives in that area. Indeed, they are. If you look around Scotland, there are many local authority areas in cities that have declared themselves to be, for example, dementia-enabled. They have a whole plan and program around that. That would be the sort of thing that Scotland would develop its own initiatives around.
The Chair: Thank you. Just before I thank our witnesses today, I want to remind the committee members that, next Thursday, we will be giving advice to our analysts with regard to the drafting of the report. So make sure you think about that in advance and come prepared to actively advise on that particular issue.
I want to thank both of you, Dr. Petersen and Mr. Berry, for your willingness to present to us today and be available for the questions that have been asked. It's been very informative and helpful in putting perspective on a number of things that we have heard before our committee during the study. I want to thank my colleagues again for their questions that have, as usual, led us to information that is going to be very helpful to the study.
(The committee adjourned.)