Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue No. 4 - Evidence - April 14, 2016
OTTAWA, Thursday, April 14, 2016
The Standing Senate Committee on Social Affairs, Science and Technology met this day at 10:31 a.m. to continue its study on the issue of dementia in our society.
Senator Kelvin Kenneth Ogilvie (Chair) in the chair.
[Translation]
The Chair: Welcome to this meeting of the Standing Senate Committee on Social Affairs, Science and Technology.
[English]
I'm Kelvin Ogilvie from Nova Scotia, chair of the committee. I will invite my colleagues to identify themselves.
Senator Raine: Nancy Greene Raine from British Columbia.
Senator Stewart Olsen: Carolyn Stewart Olsen from New Brunswick.
Senator Merchant: Pana Merchant from Saskatchewan.
Senator Eggleton: Art Eggleton from Toronto, and deputy chair of the committee.
The Chair: Thank you, colleagues. I want to remind us that we are continuing our study on the issue of dementia in our society, and we are very fortunate today to be able to have with us, by video conference, Marc Wortmann, Executive Director of Alzheimer's Disease International.
Welcome, Mr. Wortmann. As I indicated, we're very pleased to have you joining us this morning. I now invite you to make a presentation to us, and I will follow that with questions from my colleagues.
Marc Wortmann, Executive Director, Alzheimer's Disease International: Wonderful. Thanks very much for inviting me to this hearing. As you said, my name is Marc Wortmann, and I represent Alzheimer's Disease International, which is the global federation of Alzheimer's associations. The Alzheimer Society of Canada was one of its founding members in 1984 and has been a great supporter over the years. Our vision is to improve the quality of life of people with Alzheimer's disease and other dementias and their families.
Dementia is a syndrome that affects more than 48 million people worldwide now, and when the prevalence in different age groups is not changing, this number will increase to over 131 million by the year 2050. Most of the increase will take place in lower- and middle-income countries, but we will still see the number double in your country. The global cost last year was estimated at US$818 billion and will soon reach the US$1 trillion.
In many countries we've now seen a cross-party collaboration to get it on the political agenda despite political differences. All over the world there is a need for national dementia strategies, and 24 countries have done that now. Dementia is more than a health issue and has an impact on social programs, housing, transport and financial systems as well. This can be brought together in an overall plan, and this happened in a number of countries including, among others, Australia, France and Japan very well.
The World Health Organization also recommended in their 2012 report, Dementia: A Global Health Priority, that every country should have an action plan, and the region of the Americas within the World Health Organization, the Pan American Health Organization, adopted an action plan on October 1, 2015, and supports countries working on national plans, such as at the moment Chile and Argentina.
Canada has supported the PAHO resolution, and I strongly recommend that your country should have a national plan as well, touching on national issues like research funding, insurance and the position of family caregivers, while respecting that care and services are arranged at the provincial and local levels, which is, by the way, not unusual when looking at other countries. And I understand some of your provinces have already made their own dementia plans.
We did a study two years ago on national plans, and we can see that a national plan or strategy helps drive policy to the benefit of people with dementia and their caregivers. We identified a number of commonalties and also the elements that made them successful. The first of these is high-level political support, ideally from a whole-of- government point of view.
A secondary crucial success factor is the involvement of all stakeholders. Think of people with dementia and their families, the national Alzheimer's society, but also professional associations of neurologists, psychiatrists and geriatricians, care workers and nurses, care providers, community program providers, researchers and all relevant departments of the government. It is very important to listen to the voice of people with dementia and to the Alzheimer Society of Canada and include them in any plan design. A lesson to be learned from other countries is that the needs of people with dementia are not always what experts think they are, so let them speak for themselves.
Dementia is sometimes described as a journey of care by people who have to go through it, or the dementia care is also described as a chain of different related services that should fit together. That leads to the importance of care coordination and the need for a navigator or case manager. There is good experience of this in Japan and in the Netherlands, where there is a system of one key contact for the person with dementia and their family.
All the services that can be carried out in the community should be appreciated as cheaper than institutional care, although institutions can't be missed for the later stage of dementia and for those who don't have family that can support.
There are many examples of what I call "dementia-friendly communities'' where local businesses and public services consider what they can do to make themselves more accessible to people with dementia. One of the elements is a dementia friends program, and that has already started in Canada. It's a good start, and I actually became a dementia friend by watching the video and signing up. But it could even have a greater impact with in-person training, as was done in Japan. Their supporters program changed the perception of the disease completely, and there are now over 5 million dementia supporters of all ages in the country.
Another area to pay attention to is prevention and risk reduction. There is more and more compelling evidence that dementia shares many risk factors with other major non-communicable diseases like diabetes, heart disease and cancer. Smoking cessation, managing hypertension and other cardiovascular risk factors, a healthy diet and physical activity seem to reduce or delay the risk of getting dementia, which is a strong message. Many people fear dementia more than any other disease.
We need more research to find the best way to care for people with dementia or ultimately find a cure and prevent the disease. There are a number of good research programs in your country, and we appreciate the work of the Canadian Institutes of Health Research. With more funding more can be done, and research efforts are catching up in the world. But we need to bring it to the level of cancer and HIV/AIDS, where we have seen that these investments have paid off. Dementia research is still far from that level, but recently the U.S. Congress increased the dementia research budget by 50 per cent and is looking for further steps. At ADI our rule of thumb is that at least 1 per cent of the global costs should be spent on public funding for research, which would be $8 billion globally, and we are not at all at that level.
Canada is almost the only country that has supported Alzheimer's and dementia projects in lower- and middle- income countries through its Grand Challenges program, for instance, by supporting an awareness project in Indonesia. Thank you for that; it has made a big impact in that country, so please continue. Chronic diseases are now the main causes of death in most parts of the world, but that's not yet reflected in development aid. Also, the World Health Organization is doing good work with the creation of a Global Dementia Observatory and iSupport online training for caregivers. It would be great if Canada can support these initiatives alongside other countries like the U.K., Switzerland and Japan.
I'm almost at the end, but another important topic for dementia plans is monitoring and evaluation. Systematic data collection is crucial to monitor progress with these programs, and this is why the WHO needs support for its Global Dementia Observatory.
Looking at national plans, France has probably done best during its 2008-12 plan, with a number of indicators that were reported on every six months. PAHO has now also developed some indicators that might be useful, and I strongly recommend you look into this carefully.
There has not been any new drug for Alzheimer's or dementia on the market since 2003, but there is growing optimism that some compounds now in the pipeline will come through and provide better outcomes than current drugs that are only systematic and, in the best case, delay the onset of the disease a bit.
You should not underestimate the dynamic that will occur if a new treatment appears to be successful. Health systems all over the world are not ready for the demand this will create from society in terms of diagnosis, prescription and post-diagnostic support.
By creating a national plan for Canada, you can meet the challenge and benefit from the fact that you have a good health system that needs only to be adjusted.
Thanks again for giving me the opportunity to speak to you.
The Chair: Thank you very much, Mr. Wortmann. I'm now going to open up the floor to questions from my colleagues.
Senator Eggleton: Thank you very much, Mr. Wortmann, for being with us. I have had a look through one of the reports that you were part of putting together, the one done between your organization and Bupa entitled Ideas and Advice on Developing and Implementing a National Dementia Plan. I support our having a national dementia plan, and I think your organization has given us a lot of good ideas on how to proceed with it.
You have also pointed out that we have something a bit different than a lot of other countries. You talk a lot in your report about the United Kingdom and France and some of the innovative ways they have gone about doing things. Australia and the U.S. would be closer to us inasmuch as we have provinces and they have states in both of those countries.
Looking at the various studies you did, is there anything in particular that stands out and could be appropriate — maybe a number of things — for Canada to consider as part of its dementia plan?
Mr. Wortmann: What we see in both Australia and the United States is that they both have a national plan and state plans. In the U.S. it was actually the states that came first. The national plan touches more on the research area and a couple of other things, and the state plans are very much focused on services and the day-to-day life of people.
Even in countries that are smaller — I am originally from the Netherlands — the implementation of these plans is happening at the local level in smaller communities. So although there is not a formal split there between the national level and the provincial level in the day-to-day practice, it's actually happening.
So I would say you can certainly do it nationally, and you don't have to touch on everything. For instance, I can imagine there is some sort of public health campaign in Canada about healthy lifestyle, looking at the obesity epidemic. There was recently a publication in The Lancet about obesity problems all over the world. I think if you add dementia to the impact of an unhealthy lifestyle, it would make the message even stronger. That is a public health approach that is probably something that can be done at the national level.
Senator Eggleton: By coincidence, before we started this study on dementia, we just completed a study on obesity with very far-reaching recommendations. I can see the connection you are making here in terms of healthy foods and lifestyles.
I was rather impressed with what they do in France. France seems to have a lot of commitment from the top, the president. It seems to be very well organized. One of the examples of organization here is trying to overcome the typical thing we have in governments, which are silos, in trying to bring different people together from different departments and agencies in the community and trying to sort through all of that.
You say in the report that in France they set up a rather independent plan coordinator in that the person from the government was from the finance department as opposed to one of the social or health service agencies. How is that continuing to go? Is that continuing to be a key part of their success in overcoming the silo problem?
Mr. Wortmann: Well, in that period it worked very well. This lady was, as you said, from the finance department and not an expert. She chased everybody very rigorously, but after the change of government, the attention in France disappeared a bit, so the plan coordinator had to report to President Sarkozy every six months. That's not happening any longer.
Senator Eggleton: A little bit of slippage.
Mr. Wortmann: Unfortunately, it has skipped away a bit. In the period she was there, there was regular reporting. Also, during the plan they found out that not everything worked as well as possible, and they had to put more effort into the local approach. That is why they created these groups, which was a local collaboration among all the stakeholders. That was not in the original plan, but from monitoring and evaluation, it was decided to add that.
Senator Eggleton: Jeremy Hunt, the Health Secretary in the U.K. cabinet, says that the U.K. will be the most dementia-friendly country. What are they doing differently in the U.K. that he could back up that claim?
Mr. Wortmann: That's a tricky question. I think they are very good at making these claims. The society is not dementia-friendly enough yet.
But to be honest, I think the U.K. has done a great job in creating local dementia-friendly communities. They have engaged a lot of cities and towns that have declared themselves dementia-friendly and are really working on it. There is also the business world, a number of businesses that train their own staff. I can think of Lloyds Bank and Bupa, the co- sponsor of this report, as well as a number of other companies.
There is much more awareness in the U.K. than 10 years ago. People are not afraid any longer to talk about dementia, but I think the harder part is in the health system where a lot of people are not diagnosed or do not get sufficient services at home, in respite care or in residential care. A lot of steps still need to be taken.
Actually, I think Scotland has done the best in the U.K. That's not in the report because it's very recently that they decided as a government to guarantee all people who are diagnosed with dementia one year post-diagnostic support, which includes family counselling, access to services and no medical interventions. It hasn't been fully implemented yet, but we hear people really appreciate it, and they have the highest diagnosis rates in the world, probably because there is a clear follow-up from diagnosis forward.
Senator Eggleton: Thank you.
Senator Raine: Thank you very much, Mr. Wortmann. Your answer to the last question is a good segue to what I wanted to ask.
I personally feel that early diagnosis is important, yet people are afraid of being diagnosed. It's like making your will; you don't want to do it.
In any of the international strategies that you are aware of, is there a recommended time or age where it should be part of a general checkup, where you are given a diagnostic test for dementia? I'm thinking also of the Montreal test. Is that being well utilized? It seems to me to be a very efficient test to administer. It's not totally definitive, I'm sure. And if you look at what Scotland is doing, if there is a policy like that, then it removes some of the fear of being diagnosed because you know right away you're going to be helped.
I would like your comments on those things.
Mr. Wortmann: This is a very important area and probably the most difficult one to solve because, as you said, people are afraid of seeking a diagnosis. On the other hand, what we often hear is if they have struggled a few years with the early signs and then get the diagnosis, it's also a relief, and it gives you an opportunity to look at what to do now and how to manage the situation.
There is not yet a clear recommendation about at what age you should start screening. There are a few examples. In the U.K. there is a general health checkup that starts, if I'm right, at age 55, and they do include some questions about cognition, very simple, but it could lead to a follow-up conversation. That exists in a few other countries. I know in Taiwan they do everyone; at age 70 they do an annual health checkup, and they are even more in-depth.
One of the problems is that the disease probably starts in the brain much earlier than you have the symptoms, so you can have changes in your brain in your fifties and get symptoms of dementia in your seventies, and I don't think there is yet consensus about whether we should screen everybody from mid-life on or not. I don't have a good answer to that, I'm afraid, but I would say if there is in your health system a way of screening people or health checkups, then adding some questions about cognition would be useful. As you said, there are a number of simple tests that could follow up on that, like the Montreal test or the MoCA, or the five-word test that is something that can be done in a few minutes time. It's not very precise, but then there is a possibility for follow-up to a more in-depth diagnosis.
If you look at all the population at risk, it's almost half of the current population now in the higher-income countries. So to do a screening of the whole population would be very expensive — probably a bit over the top.
What we have seen in some countries, including the Netherlands, is that it is important that if people have concerns they know where they can go. If you feel you have problems with memory or other cognitive issues where should you go? Information needs to be available.
One of the tools developed over the years is called the 10 warning signs. That was made in the U.S. and is now translated into many other languages. If you look into those and you can say two or three of these things are happening with me, then that is a sign to seek further help.
Senator Merchant: Thank you, Mr. Wortmann. We have heard that there is an acute shortage of gerontologists in Canada and that the medical schools are set up in a way that does not encourage medical students to choose gerontology as one of their specialties; also, there are not general courses to acquaint students and nurses. Is this something that you have witnessed in other countries? Are people not choosing gerontology for some reason as their specialty? Someone said yesterday that it's maybe not a sexy option for a medical specialty.
I'm wondering what is happening in other countries and what they are doing to remedy the situation.
Mr. Wortmann: You are probably right; it's not such a popular area, although I heard somewhere that from all the medical specialists the gerontologists and geriatricians have the highest job satisfaction but also the lowest salary.
I think it's changing a little bit. What we do see is that a lot of young people are interested in aging — young people working in the medical world. But I cannot recall any country that is making this a priority or is stimulating or referring people to this area. It might have to do with the fact that the medical professionals also feel there is not a cure and there is not much we can do, so having a bit of medication would maybe attract more people in this direction.
Senator Merchant: This is not necessarily relating to Canada, but it is a worldwide phenomenon. What do you think about a country like China, where people are aging quickly, and with the one-child policy there is not family necessarily to keep people at home? When you think of that macro kind of way, what do you see going forward for the world?
Mr. Wortmann: I think a major problem, especially for those kinds of countries, is that institutionalization is not a good solution because in China you have to build hundreds of thousands of care homes if you want to do that. I think the Chinese government is a little bit aware, not so much yet, but wants to improve its primary health care system so that they can identify people earlier, take people earlier and give them some community support.
The countries that have the most elderly are the most active in this area, so Japan, South Korea in Asia. Singapore is also catching up, and then European countries and your own country and the U.S.
In general I would say there is an understanding that the old model of families taking care of a person with dementia might not be sustainable for the future when the demographic change is happening.
In Japan one quarter of the population is over 65, so there are not enough young people to care for the elderly. At the moment they cope with it by hiring nurses from the Philippines or Indonesia, but these countries will age themselves, and then it will not be possible any more.
Another area we should look at is health technology and the use of technology to care for people from a distance, or give them the opportunity to stay independent longer, but we are really at the beginning of that, and in a few countries they are now looking at what robots can do in care giving.
Interestingly, I saw in the U.S. that people are very afraid of robots. They immediately think of The Terminator, but in Japan they have very friendly robots, and they don't see this as a problem at all.
Senator Stewart Olsen: Thank you for your presentation, Mr. Wortmann. I have two questions. The first one is this: Are there any studies that you know of where they are doing prophylactic treatment of Alzheimer's? Much like studies on breast cancer and tamoxifen and things like that, are there any studies that are doing that? I imagine it would have to be a fairly broad study, but it could be interesting.
Mr. Wortmann: Yes, there are a number of studies that look into that. There are two things. There are a small proportion of people with Alzheimer's disease who have a genetic form. That is the type of Alzheimer's, if you have seen the film Still Alice, that the character of Alice in the film has. So if your father or mother has it, you have a 50 per cent chance of developing it as well.
The most prevalent case of this is in a little town in Colombia where almost everybody in the community develops Alzheimer's disease, and it's probably the most studied population in the world. They start with interventions with people in their twenties, and everybody in this community wants to contribute to it because they feel they're at high risk.
Then there is another study that was completed by the DIAN, the Dominantly Inherited Alzheimer Network, which is a collaboration among universities in the U.S., Canada, Australia and some European countries. They followed a large cohort of people also with genetic factors from a very early stage where they don't have symptoms but are suspicious that it's in their families. They tried to see if any current drugs or even drugs that have not yet been approved are effective for these groups.
Senator Stewart Olsen: Thank you. I think that would be very interesting, because if half the world population is going to get dementia or Alzheimer's, then a prophylactic treatment would be really good.
Of the countries that have national strategies, is there one that you would say is perhaps the furthest ahead? Have they done any evaluations? In our study, if we could look at their evaluations and perhaps not recommend the things they found didn't work, that would be great, if you could comment.
Mr. Wortmann: Right. A very comprehensive evaluation of the French plan was done in 2012 or 2013. It's only available in French, but many of you are able to read that. It was done by a French professor and a Belgium professor. It's a 100-page document, so it's quite large.
The United States updates its plan every year. It's some sort of evaluation, although I'm not aware that it's published. That's the same situation with Japan; they are already on their third plan, but it's difficult to get the information in English. I don't read Japanese, unfortunately.
Japan and France are probably two of the best plans that we have seen, although I would not say there's one that you can easily copy and then just not look at the rest as a result of your own health system and because of elements that are different country by country.
The Netherlands is also doing good work and has evaluated previous plans, using them for the next round. I think the U.K. is still evaluating its last strategy.
We are planning to do a follow-up on this report, by the way, because since we have completed it, many new plans have been published and many new studies as well.
Senator Stewart Olsen: Thank you.
Senator Munson: Thank you for your concise report today before us. It has been very helpful.
I understand Alzheimer's Disease International offers a series of workshops known collectively as the Alzheimer University to its staff and volunteers. Can you describe the goals of the Alzheimer University? Are the workshops well attended? What issues and challenges are addressed there? Do you provide follow-up support to attendees as well? I would appreciate that.
Mr. Wortmann: We do. It's a virtual university. It's not a building. We can do the training anywhere in the world.
The idea behind it is that we are a small organization with very few resources, but we want to build capacity in our member organization, so the training is exclusively for people who work in Alzheimer's associations and societies, either as a staff person or as a board member or volunteer.
There are two work streams, one for the emerging associations that are at the early stage of their development. We give them all the basics on how to create a successful association. The other one is for the more advanced and is about public policy and all the issues we're discussing today, to get a better understanding and teach them how to work with their governments and advocate for better-quality Alzheimer's policies and services.
It's done by bringing some specialists in but also learning from each other and using the energy and the knowledge that's in the group. People present to each other an action plan at the end of the training, and then we follow up every six months up to 18 months with reporting to ADI on how it's implemented and if they need further support.
Senator Munson: Can you give me an example of who has attended this virtual university around the world? Have Canadians taken advantage of what you're offering?
Mr. Wortmann: Yes, they have. Canada didn't need the early-stage training, but they have participated in some of the Alzheimer University's courses on public policy. I think one of their takeaways was that it would be really beneficial for them to have a national plan, so they plan to advocate for that.
There are also people from countries like Peru, Argentina, Indonesia and Taiwan who have done this and have successfully, when they went home, worked in their own countries to promote dementia policies.
Senator Munson: Thank you very much for that.
The Chair: Before I go to the second round, I'd like to ask you a question, Mr. Wortmann.
One thing I've noted that has been getting some attention recently actually originated in the Netherlands, if I understand correctly, and that is the concept of a memory café. I've read that this concept began in the Netherlands and migrated to the United States and seems to be progressing rapidly into other countries and indeed to certain provinces here in Canada.
I wonder if you could give us a bit of your view on these, the importance of them, the benefits and any other comments you'd like to make.
Mr. Wortmann: Sure. Yes. I've been to a lot of them in multiple countries but mostly in the Netherlands. It's called Alzheimer's Café there. The connection of Alzheimer's and café is unusual, so it triggers people to think, "What is that? Are you bringing people with Alzheimer's into a café?'' No, that's not what is happening.
The purpose is to create a safe environment and a threshold to seek information and support in a way that is very friendly and embracing for people. The founder of the first Alzheimer's Café in Leiden in the Netherlands, what they did is on an evening once per month, people get in at 7:30 or 8:00 and they get a lecture or video or interview for half hour. Then there is a break, with a little bit of piano or guitar music. People can drink coffee or even beer or wine. In the second half there is a Q and A with the audience, and everybody in the room can bring up their issues. It helps for people who are afraid of talking about it but are still curious what they can learn. If you have good leaders in the meeting, they identify people with issues who are afraid to speak out and can approach them one on one as well.
The model has been extremely successful. The first was created in 1997. A few years later there were five, and then six or seven years later there were over 100, and now there are over 200 in the Netherlands. Every city has one. In Amsterdam there are six. They are in different parts of the city. I think in Belgium there are 50, and in the U.K. there are also many of them. They are even in countries in other parts of the world. Argentina has a lovely Alzheimer's Café in Buenos Aires, and they finish the meeting with music and dancing. They feel that's their style of working.
The most important thing is creating an atmosphere where people step over their fear of talking about dementia. That's the benefit.
The Chair: Thank you very much. That's a very nice overview. They are apparently appearing to be spreading like wildfire for perhaps obvious reasons.
Senator Eggleton: Just to follow up on the comment about the cafés, the Alzheimer Society of Canada has a program called First Link, which I think is probably intended to be something similar. It provides for counselling and also the provision of information. I don't know if you're familiar with it.
You can comment on that, but what I really wanted to ask you about is caregiving, particularly the need to get professional people in. It's not a highly paid kind of position. It's difficult to get those kinds of people.
Then there's also the issue about informal caregiving, the family that looks after people. What kind of good examples or best practices do you think are coming from the studies about different countries in terms of dealing with the issue of caregivers? Is any particular country well advanced in terms of dealing with that issue?
Mr. Wortmann: I think the best quality of professional caregiving is probably found in the Scandinavian countries, where the profession is taken seriously and you can study nursing at universities. There's quite a high level of education for professional caregivers.
But you're right, it's an underestimated job. A lot of people are not well paid or well trained. It makes a big difference if they are, so we feel it's very important to work on that.
Informal caregiving is patchier. Some good interventions have been developed, such as at New York University by Dr. Mary Mittelman. She has an approach of including not only the primary caregiver but the rest of the family as well. She has developed that over the years, studied the results and then changed and modified it. It is an effective program. It's not very expensive or complicated.
I guess that sometimes in Asian countries I see a bit more attention towards good caregiving and more respect for the elderly than in other parts of the world, at least compared to Europe. The Asians do it better. But it's a big issue, and there is not yet a place where I can say, "This is a perfect model you could look at.''
Senator Raine: I want to turn to research because you mentioned in your opening remarks that we need more research. I'm just wondering what the role of your organization is in terms of networking, the research that's being done around the world.
Just by chance this morning, I attended a breakfast where the speaker was giving information on a program that he's working on involving a simulated brain, which is sort of done with computers. It seems to hold a lot of promise, because you will be able to test different chemicals and things like that on the brain, such as pharmaceuticals, and find out what happens to it digitally, with a computer, without using animals or humans.
He mentioned that different countries approach brain research in different ways. I think all of them are motivated in terms of knowing that dementia is when things go wrong with the brain.
I'm wondering if your organization has a way of linking and working with all these different programs that are happening around the world.
Mr. Wortmann: That's a very good question. I think there is general brain research that is important because the brain is probably the organ we understand least about, compared to the heart or lungs. It's much more complicated. I would say that's an important area.
More specifically, dementia research — by the way, using computer models instead of animals I think is a very good step, because not only does it hurt the animals if we use them for research, but also dementia research shows that animal tests are not very reliable. Often several medications work very well for mice, but when tested on humans, they don't do anything. Sometimes we say mice are very lucky; if they get Alzheimer's, there are a couple of good drugs for them. The stupid thing is that mice don't get Alzheimer's; it has to be inputted into them superficially.
With dementia research, we had the G8 summit a few years ago, and there is more attention from the most developed countries. There's also better research coordination.
I think the best program at the moment is the EU Joint Programme —Neurodegenerative Disease Research, which comes from Europe, but Canada and Japan have joined it as well. We are missing only the U.S. from the bigger countries. Under that program everybody still does their own work, but they know from each other what is happening, and they compare the programs and try not to overlap or duplicate.
On the other hand, sometimes duplication is necessary to make the evidence stronger and better. There's a lot of debate now in the scientific world anyway that many studies done cannot be replicated. So you shouldn't try to fix everything, I think.
Another thing that is very recent and not yet published, the World Health Organization has completed a big project into research prioritization. They interviewed 500 or 800 researchers and asked them to come up with research questions that have not yet been answered. They all gathered together in a system, and everybody was asked to vote on a priority. There's a list coming out of that soon.
A few of the things that are clearly not good enough are that there is, of course, no cure. Two major things on that list are that we need more evidence on what works in terms of risk reduction and prevention, and we need better evidence on care models and what is effective care and caregiving.
Senator Raine: Thank you. Could you give me the name of the program where they're sharing studies?
Mr. Wortmann: The JPND, the EU Joint Programme — Neurodegenerative Disease Research.
Senator Raine: Okay. You also mentioned systematic data collection being done by the WHO on the global prevalence of Alzheimer's. Will that data collection look at lifestyle contributions, such as poor nutrition, too much sugar, obesity, those kinds of factors and how they relate with the development of Alzheimer's?
Mr. Wortmann: I would say I hope so. It's about to start. They're still struggling with the funding, but there is really good data for cancer and heart disease, for instance, in these areas. We now know quite well what contribution all of these lifestyle factors have made for preventing cardiovascular diseases, and that's as a result of systematic data collection over a period of 30 years. We haven't yet had anything like that for dementia.
It's a long shot. There will not be any solutions in the next weeks or months, but I think it's very important.
Senator Raine: Thank you very much.
The Chair: As a final question, Mr. Wortmann, we are aware, and you've outlined the overall issues extremely well for us. With regard to national strategies that are a relatively recent emerging and critical aspect for this very important issue, as you've pointed out, we are a federated country. The challenge of developing national strategies is fraught with a lot of political issues, such as overlapping jurisdictions and so on.
I'm wondering, in looking at the national strategies that are currently in place and are deliberately evolving, if you can identify which entity is best positioned to actually develop and deliver on a national strategy. Would it be the national government, or would it be an organization with national and regional impact and organizational structure such as the Alzheimer Society? Obviously in a national strategy somebody has to take charge, identify the issues and find ways of distributing and implementing them down to the local level.
I wonder if you have any advice with regard to what kind of a coordinating structure is best in that regard.
Mr. Wortmann: Well, I would say a strong commitment from the government is very important. That will allow it to be taken seriously. Hopefully in your country it will be taken seriously.
Also, involving the Alzheimer Society would be a good strategy because they have national, provincial and local chapters that are also federated but at least united in their objective to hopefully end this disease or deal with it as well as possible. I would certainly say give them a big role in this process.
On the other hand, they should be able to criticize what is happening as well. If you make them overly responsible, I'm not sure they would like that.
The Chair: I appreciate the challenges in this overall and the need to have a very alert body involved nationally and regionally with regard to the overall issues.
Mr. Wortmann, you bring an exceptional viewpoint to our discussion on this very important issue and tremendous awareness of the experience around the world. We thank you for that.
If following this meeting any particular example occurs to you that didn't come up in our discussion, we'd appreciate your contacting our clerk and informing us of that.
On behalf of the committee, I really want to thank you very much for the depth and clarity that you've brought to each of the questions today. With that, I declare the meeting adjourned.
(The committee adjourned.)