Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue No. 2 - Evidence - March 10, 2016
OTTAWA, Thursday, March 10, 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.
[Translation]
The Chair: Welcome to the Standing Senate Committee on Social Affairs, Science and Technology.
[English]
I'm Kelvin Ogilvie, senator from Nova Scotia and chair of the committee. I will ask my colleagues to introduce themselves, starting on my right.
Senator Seidman: Judith Seidman from Montreal, Quebec.
Senator Stewart Olsen: Carolyn Stewart Olsen from New Brunswick.
Senator Nancy Ruth: Senator Nancy Ruth from Toronto.
Senator Raine: Nancy Greene Raine, senator for British Columbia
Senator Eggleton: Art Eggleton from Toronto and deputy chair of the committee.
The Chair: Thank you, colleagues. I will remind everyone that we are continuing our new study on the issue of dementia in our society.
Today I should explain at the beginning that we originally intended to have a second witness from Alzheimer's Disease International, but that will be rescheduled. We had technical difficulties making connections that would be reasonable, so that will definitely be rescheduled.
Joining us today by video conference from Geneva, Switzerland, from the World Health Organization, we have Dr. Shekhar Saxena, Director, Department of Mental Health and Substance Abuse.
Doctor, we are looking forward to your presentation to us. Following your presentation, I will open the floor up to questions to you from my committee. Would you please make your presentation to the committee?
Dr. Shekhar Saxena, Director, Department of Mental Health and Substance Abuse, World Health Organization: I must begin by saying that it is a privilege to be a witness for Canada's Standing Senate Committee on Social Affairs, Science and Technology. Canada is a member state of the WHO, and we are privileged to be providing technical assistance to the member state of Canada by way of the Senate standing committee.
My testimony will be based on existing World Health Organization material, and I will give an introduction to dementia from a global perspective. It is a syndrome in which there is degradation in memory, thinking, behaviour and ability to perform everyday activity. It mainly affects older people, but is not a normal part of aging. Worldwide, more than 47 million people have dementia, and there are more than 7 million new cases every year. Alzheimer's disease is the most common cause for dementia and may contribute to 60 to 70 per cent of cases globally.
Dementia is one of the major causes for disability and dependency amongst older people worldwide. Dementia has physical, psychological, social and economic impacts on caregivers, families and societies, besides, of course, the people who have dementia. It has a serious economic dimension. Worldwide, it gives rise to a loss of about $600 billion every year, and this is likely to increase to $1.2 trillion by the year 2030. With the demographic shift that a majority of countries in the world are having, it is likely that the prevalence of dementia will increase substantially in the coming years.
The WHO has regarded dementia as a public health priority for about six years now. The first technical document that we came out with was in 2012. It is a WHO report called Dementia: a public health priority. I hold it in my hand. A link to this report has been provided to the Senate committee. This report discussed the burden of dementia on people, society and families and also provided some helpful suggestions on what would be the evidence-based interventions at the clinical and the public health levels.
Following this, the WHO organized a ministerial meeting in March 2015, which was attended by large number of countries from all over the world, including Canada. It focused attention on the public health dimension of dementia. WHO Director General Dr Margaret Chan said at this meeting:
I can think of no other disease that has such a profound effect on loss of function, loss of independence, and the need for care. I can think of no other disease so deeply dreaded by anyone who wants to age gracefully and with dignity.
I can think of no other disease that places such a heavy burden on families, communities, and societies. I can think of no other disease where innovation, including breakthrough discoveries to develop a cure, is so badly needed.
The Canadian delegation to this meeting in March 2015 consisted of Assistant Deputy Minister Kim Elmslie and Dr. Alain Beaudet, President of the Canadian Institutes of Health Research.
Subsequent to that, the WHO is involved as an associate member in the World Dementia Council, which I am pleased to note is chaired at present by a Canadian, Dr. Yves Joanette of the Canadian Institutes of Health Research. We are collaborating with him and the membership of the council to make dementia a much higher priority globally.
We are also developing a world dementia observatory which will collect and disseminate data on dementia for as many countries as we can, with an objective to make it global. Before the end of this year, this observatory will be functional. Canada has been selected as one of the pilot countries, so we are expecting Canada to play a big role in providing data and also to suggest ways in which global monitoring could be done in a suitable manner.
Last, the World Health Assembly, which consists of all the ministers of health, including Canada, is likely to discuss the issue of dementia in subsequent years to come. Before that, it will discuss it at the executive board level in 2016.
I would now like to answer the question that has been posed to me quite specifically, namely, what should be the contents and the logic for a national dementia strategy? We believe that a national dementia strategy, or a plan, or a policy, could play an important role in a country, especially in a developed country like Canada which could play a leadership role for all countries. It should be a multi-sectoral strategy involving key stakeholders from all sectors within the country.
The contents of this strategy should be, first, on public health, which will consist of an analysis of current status and monitoring mechanisms; on strengthening human resources; on integrated health and social care models with emphasis on community care, prevention and risk reduction.
Second, it should deal with clinical care, which consists of early diagnosis and assessment; establishing minimal standards of care, use of new medicines and upcoming technologies and support to caregivers, which is extremely important.
It should have a third component of community involvement, including public education and awareness and leading programs, for example, the Dementia Friends program, which I believe has already been initiated in Canada.
The fourth component should be research, which would include basic science research to find the cause for dementia and implementation science for implementing evidence-based strategies within the country, especially and including newer medicines and technology.
The strategy should be very sensitive to gender, to ethical and human rights perspectives, and should include financing mechanisms, including innovative financing models and modeling for future resource needs. It should be a public-private partnership. We believe that the government has the primary responsibility to provide leadership on an issue like dementia, but there is a role for private agencies, including nongovernmental organizations, in assisting in the effort.
Finally, but quite importantly, there should be a component of international collaboration. We believe that no country can handle a problem like dementia entirely on its own, and international collaboration amongst developed countries, but also between developed and low- and middle-income countries, could be very instrumental in deciding what would be the best strategy for any country but also for mutual learning amongst the countries.
We believe these are some of the basic principles and ingredients of a national dementia strategy, or any other name by which it can be called.
I am very aware that Canada has provinces and is a system that has divided and clear responsibilities between the federal and provincial governments. However, we do believe that a leadership role at a national level, of course incorporating the governments at each level, including provincial and local governments, will be extremely useful for going forward in a coherent way, having the benefit of working together within the country but also internationally.
Finally, I would like to suggest as a WHO suggestion that dementia at a national level should be prioritized much higher than what is possible now. There should be a coordinated national response, and there should be opportunities for international learning and collaboration.
I will stop here. I thank you for your attention, and I am willing to answer any clarifications or questions.
The Chair: Thank you very much, doctor. I will remind us of the delays in the distance as we are asking our questions and wait for the responses.
I will now open the floor to questions from my colleagues, as I indicated. I will begin with Senator Eggleton.
Senator Eggleton: Thank you very much, Dr. Saxena. Welcome, and thank you for your clear outline about what you think we need to consider as far as a strategy is concerned for dealing with dementia. I noted the reference you made to Dr. Joanette, who is chair of the World Dementia Council and who was here yesterday to lead off our consideration of this matter.
First, I would like to ask you about the issues of prevalence versus incidence with respect to the growing number of people that are suffering from dementia. Obviously, with the demographic change in the population, we will have more and more people suffering from dementia, but is there also an increase in the incidence of dementia? Is there some basis to be concerned about things that are happening — in terms of lifestyle, for example — that are increasing the incidence, or is it all just because of the demographic change?
Dr. Saxena: The point that you raise about prevalence versus incidence is an extremely important one. The WHO has information which suggests — and I must admit that the information is not conclusive — that there is higher incidence and also higher prevalence of dementia, and these two are obviously related.
The incidence is age specific. That means that the incidence within each of the age ranges is showing an increase globally, although that might not be completely true for for each of the countries.
Some of the reasons for this are exactly what you mentioned: the lifestyle issues. This means that we have more obesity, diabetes and untreated hypertension. We have other risk factors, including tobacco use, which are operative towards increasing the incidence of dementia in each of the age ranges. We do believe that some countries are controlling these risk factors much better than others.
One will have to examine quite specifically the Canadian situation to be able to contextualize this global information in a suitable way. I will give an example. Some of the countries that have a high incidence of HIV have an added incidence of dementia because of HIV, and similarly for some other conditions that are risk factors for dementia.
I must come back to the demographic change. Although the incidence might show a small rise, much of the rise is due to the changing demographic situation. We have a society which is living longer, and there is a higher percentage of older people in the population. We do know that the incidence of dementia rises with each age group. If there are more people in the higher age groups, there will be more dementia.
I would like to add one point here, which is an interesting one. People eventually have to die because of something. As we control the other diseases that are the big killers — for example, heart disease, cancer and some of the other common causes of death amongst middle and early old age — people are likely to live longer and will eventually die of something, and one of those causes is dementia. The increased control of other diseases will actually give rise to more dementia; and the better we care for people with dementia, the longer they will live, and so the prevalence will actually increase.
The better we care for people with dementia, the higher the prevalence will be, which seems contradictory. However, that is something we need to analyze and model over a period of time.
Senator Eggleton: Does that mean that people may still die from dementia-related diseases even though we get better control on it and we have a strategy to deal with the matter? Is it then a question that they may die from it, but they may live longer in better health before they reach that point? If they live longer, isn't the objective here to make sure that they don't spend their last few years in a lot of pain and a lot of ill health?
Dr. Saxena: That was exactly the thrust of my argument: that people will live longer with dementia if we care for them better. If we start the care early, they will live longer in a situation and condition that provides a respectable quality of life for them and for their families.
Better care means longer life, and better care also means better quality of life for more years. Eventually, since we know that we do not at present have a cure for dementia, people will deteriorate sooner or later. We can only retard the process, but we cannot stop or reverse the process at this point in time. We need to be mindful of the fact that people will enter a situation which does not provide such a respectable or adequate quality of life, and there will be care necessary at the end of life that could be very unsatisfactory but is obligatory.
Senator Eggleton: I want to clarify one more matter that you raised. We talked about lifestyle, but I remember seeing a chart — I don't have it in front of me — that showed a higher prevalence in some of the poorer countries, particularly in Africa. You made a reference in your opening remarks to HIV. Is that the reason for those countries in Africa showing a higher prevalence of dementia?
Dr. Saxena: HIV is one of the causes but certainly not the major cause of dementia in Africa or some other countries. The increasing incidence of non-communicable diseases, and in some countries infectious diseases affecting the brain, are some of the other causes for dementia. We do know that the proportion of Alzheimer's disease within the overall incidence of dementia is higher in high-income countries versus low-income countries, where multi-infarct dementia as well as dementia because of other secondary causes is higher than Alzheimer's. There is a variation across the world. Some of the secondary causes are much more important and significant for low-income countries, including countries in Africa. HIV is only one of those causes.
Senator Seidman: I am looking at the WHO document Dementia: a public health priority, which is quite a comprehensive overview and is much appreciated. Thank you. One of the key messages under supporting informal caregivers of people living with dementia says that a range of programs and services have been developed in high- income countries to assist family caregivers and to reduce strain. However, research on their effectiveness in different social, cultural and geographical contexts is limited. It indicates that there is an urgent need to develop and implement an array of low-cost or no-cost government-supported services within an accessible infrastructure so that even those with significant barriers to accessing services will be able to do so if motivated.
I ask you about this specifically in the context of a chart a couple of pages along in this same document that shows WHO region-specific figures of informal care inputs in hours per day. It is quite overwhelming to see that the average input is about 8.2 hours a day byf informal caregivers to help people with dementia, family members or friends, whoever it is, get through their day. If you look at Central and Eastern Europe, it is approximately 10 hours a day. It goes somewhat lower but not much. You might find six or seven hours as the low end. The average overall, as I said, is 8.2 hours a day.
I look at that chart, and then I look at your key message about the importance of the whole area of assisting family caregivers and informal caregivers. How can we achieve that? What would you have to give us for input in this area, please?
Dr. Saxena: This is one of those extremely important areas where much can be done, even if we do not have a cure for dementia. Informal caregivers, especially family members, and more especially the women in the family — it may be the spouse, the daughter, the daughter-in-law — are the people who care for the people with dementia within their families.
I do not that this 2012 report states there is not sufficient evidence for caregivers, information and support programs to be effective and cost-effective across the cultures. We know a bit more now in 2016 compared to what we knew in 2012. Although it is still not conclusive, there is stronger evidence that informal caregiver support programs can actually improve the quality of life of people with dementia and also the quality of life of carers. It can decrease the burden in a way that is extremely helpful over the long-term so more people can stay within their families and communities rather than be institutionalized. Obviously, for any community in a country, that will be the goal.
The kinds of informal support programs that have been tried in various countries include providing information and support by health care providers and social care providers using the mechanisms and methods that are appropriate for that community. That may include face-to-face consultations; information in written form; information by audio and video programs; and online, including eHealth and mHealth support, which are useful to provide information and support.
It also includes some benefits from the social sector, including respite care and self-help groups. People can get together and learn the best ways of caring, and also provide respite care, which is extremely important. When I say "respite care," I mean that the family members can get some time off — a few hours, a day or a weekend — from looking after the person with dementia in their family. Other people can do that, mostly carers from other families, and it works quite well.
The third common method for providing support to caregivers is fiscal methods. There could be benefits on their income tax or some direct fiscal benefit in terms of providing money or in-kind support. It can be quite useful.
It has been suggested, although not proven, that these kinds of supports provide payback much more than the expenditure on these. For example, if the country is providing in-kind support to the families in terms of respite care or help with day-to-day household work, the person actually stays within the family for a much longer time. That saves, eventually, a lot of money for the communities and the countries.
The WHO recommendation now is a bit stronger than what we could say in 2012, namely that informal caregiver support is a very effective method for looking after people with dementia within the communities and families.
Senator Seidman: If you haven't actually said this, you certainly implied that in order to improve the quality of life for people living with dementia, perhaps living in the community longer as opposed to going to a hospital or an institutional setting is important. As we all know, most of our resources these days go into acute care, hospital settings. Does this mean that governments ought to look at reallocating resources to community health care and social care as opposed to keeping all those resources in the hospital care setting?
Dr. Saxena: I have absolutely no doubt about what you just said. The WHO's recommendation is very clear. For better quality of life of the person with dementia, as well as their family members, it is important for resources to be allocated for community care. Integrating them within the overall health and social care system rather than placing them vertically within the system, a from institutional care to community care, is evidence-based for more effective care and also for eventually more cost-effective care, which would be the goal for any community or country.
Senator Seidman: I really appreciate hearing you say this, because the WHO has such an important leadership role to play. If we can hear one thing that's the most significant of all, I believe that you've just said it. I truly appreciate that. Thank you.
Senator Nancy Ruth: Thank you, doctor. One of the comments you made in terms of policy was that we should be sensitive to gender. I wonder if you could say a little more about what you were meaning when you said that. Then I'm going to ask you what kind of links you have with UN Women, if any.
Dr. Saxena: Gender is an extremely important aspect for many health conditions, but certainly also for the condition of dementia. To give you examples, there is different prevalence and incidence between men and women for dementia. As well, as I described in response to an earlier question, the vast majority of informal caregivers for people with dementia are actually women. That aspect is often not taken into account when making a strategy, either at a national, provincial or local level. This needs to be much more clearly integrated into strategies but also directly into services, so that the people with dementia as well as the caregivers can optimize the benefit from these strategies and services in the best possible manner. Of course, women react to stress, as well as to the caregiving role, in a very different way than men do. Those are important aspects that need to be kept in mind as we strategize and develop services.
I must add that, unfortunately, real evidence on some of these aspects is still quite missing, because these have not been looked into in as much detail as it should. Although there is some literature on this, much of it is based more on practical experience, and we need to learn much more. We will do that as we start practising some of the common-sense strategies that come to mind, and also learning from some of the other areas in health and disability where the evidence is a little more robust than in the case of dementia.
Senator Nancy Ruth: When you mention the fact that most of the caregivers and most of the patients are women and that this needs to be taken into account in strategies, what kinds of things are you thinking about?
Dr. Saxena: Just to give you an example, the kinds of information and support mechanisms that women use can often be very different from the information and support systems that men use. This may not be that true for Canada, but it is certainly true from a global perspective where the proportion of women who are working, as well as the proportion of women who are educated and trained, can be vastly different within the country. Those are aspects on a global basis that will need to be kept in mind as we develop strategies for these.
I cannot comment specifically on the Canadian situation simply because I'm not that much aware of these aspects. However, I would very much encourage the Senate committee to consult Canadians who might be much more aware and who have worked in this area as you develop a strategy further.
Senator Nancy Ruth: Is your organization working on this issue with UN Women, and would that be appropriate?
Dr. Saxena: At this point in time, our work with UN Women is confined to a few areas, and dementia is not one of them. But I do take your suggestion seriously and I think it's something we need to be doing.
Senator Nancy Ruth: I want to ask one final question on the issue of race. Canada is a multiracial society. I don't know what the evidence is, but are there racial groups that are more inclined to get dementia or Alzheimer's than other racial groups, and should we develop a public health strategy that would reflect this?
Dr. Saxena: I'm not aware of any major difference based on race, but certainly, as we discussed earlier, there are personal as well as lifestyle factors that make a large difference to that. If those are connected to race, certainly race will play a role. But race by itself, I'm unaware of any evidence that it plays a big role.
The Chair: Before I turn to Senator Raine, for the viewing audience, I should note that the doctor used the term "m- health" in his response, and that refers to mobile health. It's not a term we use all the time, and many in the audience may not be aware of that.
Senator Raine: Thank you very much. I appreciate you being here.
I want to turn to a different angle and find out if WHO is doing anything in terms of being a portal for sharing of best practices. I'm thinking that if you do want people to stay in their homes and in the community, there is often a shortage of wheelchairs, bathing facilities and these kinds of things. If you need any medical equipment, it seems to me that once it's medical, it's very expensive.
Around the world, are people coming up with more common-sense, low-cost but workable solutions for helping people who, as the disease progresses, are losing their mobility? That's a big issue, because once a person loses mobility, especially if they happen to be overweight or obese, it becomes almost impossible to keep them at home. I'm wondering if there is any way to share best practices around the world on things that help the caregivers make it easier.
Dr. Saxena: In fact, I will expand upon a remark I made earlier, which is relevant in response to your question. This relates to learning across countries and across cultures, which we believe is extremely important. This applies to learning at a strategy level but also to learning community practices and other experiences that several communities and countries have.
We believe there is a lot of mutual learning to take place at all levels. With that in mind, we have started two projects. One is the Global Dementia Observatory, which I referred to earlier, which will be more for countries and governments where data on prevalence, incidence, burden — but also on resources, strategies, health care systems and research — will be collected from each of the countries and made available in an accessible manner, and also some policy and practice briefs developed to assist countries in finding out what they could do better.
This will also have a set of best practices that we will disseminate from different parts of world and from different communities, which could be very helpful for people to see what could be done within the infrastructure that they have or are likely to have in the future.
Here I'm especially referring to low-cost strategies, which we believe are not only important for low- and middle- income countries but also extremely important for high-income countries. We believe that each country, whatever the income level, is still a developing country as far as the area of dementia is concerned. Every country has a lot to learn, and this learning could take place from across the income levels and cultural divides that we work within. WHO is assisting in bridging the divide in as appropriate a manner as possible, and we are making that a high priority.
The second project that I must refer to also relates to an earlier question asked. We are establishing an online platform which we are calling iSupport, which will provide information and support to caregivers. This will be an electronic and mobile platform that will help caregivers, wherever they might be, find practical information and advice on what they could do, within themselves and also from the health care system that might be available. This online platform will be operative by the end of this year in the English language, but we will encourage countries to translate that into their languages and adapt it to suit their national requirements, which will also answer the question that you raised: Can people learn from each other's experience and share best practices, which this platform will do for the caregivers. On the other hand, the Global Dementia Observatory will be more for policy planners and health care providers as they learn from each other.
In brief, we are very conscious of opportunities to learn across countries and communities. In a small way, we are trying to facilitate that interaction. I must add that this could also be done at a national level so that different provinces and local communities can learn from each other. Establishing some nationwide platforms for reaching these objectives would also be something worth thinking about.
Senator Raine: I think that's a great innovation. Obviously when Alzheimer's or dementia strikes and the family is doing everything they can to look after the person at home, they need to be trained. They need to learn what to do and they need to learn what to expect. In institutions, on the other hand, I presume there is an international standard of training. How are people providing institutional care, whether it be publicly funded or privately funded, and how are they being trained around the world? Is there sharing of standards in terms of this kind of care?
I personally have been extremely impressed by the compassionate care that is given in the institutions that I've interfaced with, but I don't know what kind of training they've had. It's almost like there's a calling for this kind of work; and if they have that calling, the compassion they give probably makes up for technical training? I would like a comment or whether there is any interface with that kind of training.
Dr. Saxena: Internationally, there is no minimal standard for care or minimal standard for training that is available. Across the world, and also within the countries, there is a wide variation between the kind of training the professional caregivers receive and the care that is actually given to people within hospital or institutional settings.
Although your experience has been very good — and I respect that — in many countries and in many communities, the care that people receive is far below what should be ethically and medically acceptable. We do know that in many countries, human rights violations and, frankly, abuses of people who suffer from dementia are widespread. This, we believe, is a serious issue that needs to be tackled not only by the international community but also by countries, to set minimal standards, to put ethical guidelines and make sure these are observed, especially within the care facilities but more widely within the communities. Elderly abuse is becoming quite a serious problem, and people who have dementia are especially at risk of those kinds of abuses.
Senator Raine: Thank you very much. I think we should look into that as our study proceeds.
Senator Merchant: Thank you, doctor, for being with us this morning.
To follow up on the last vein of questions and answers, we were told yesterday, and we all know, that one of the issues is that sometimes people are in remote areas. Our country is very large, and sometimes populations are sparse and people live far apart. Even if you have a standard, it becomes more difficult to offer all the services. Since Canada is an affluent society and a developed country, perhaps it is not as badly off as some of the other countries.
The other thing that you touched on several times is cultural differences. There are certain cultures where people are cared for by their own family. It's not particularly acceptable to put your parent in an institution, for two reasons: First, your parent expects you to look after them; and, second, you yourself do not want to put your parent in an institution because other people might not think well of you, especially if you live in a smaller community.
I'm just wondering what kinds of guidelines the WHO puts out to help people who might find themselves in this last situation that I referred to, the cultural aspect.
Dr. Saxena: On the first issue that you raised, we do know that even high-income and developed countries might have populations that are underserved. One of the reasons for that is being remote. Canada is an example of that. This applies to many other areas of health. Dementia is not an exclusive issue for serving the people who live in remote areas.
One method for covering these populations which might be operative for Canada — and there's good experience from Australia, which also has remote populations — is the use of technology, including telemedicine, consultations on phone and videos and data transmission. Using some of these technologically advanced techniques could be quite useful for that.
Eventually, it's the families that look after people, especially in remote areas, because facilities will be far away. Families, as you referred to in the second part of your comments, may not like to utilize the institutional facilities because of cultural background, which should be respected.
That brings me to another point, namely that services and care must be sensitive to cultural traditions and the views of the people, including people who have dementia, and services need to be adapted to the perceived and real needs of people as they express them. As I referred to in my initial remarks, a consultation with various stakeholders, when we develop the strategies, is absolutely essential. That group of stakeholders includes communities and people with dementia who need to be consulted to see what is best for them. The person with dementia must be heard. Without this, nothing will be equally applicable to people and families with dementia. They do need to be consulted on what is their preference. This will apply equally to people in remote areas.
Senator Merchant: In a multicultural society such as ours — and we are a bilingual country — sometimes there are issues about communicating in a language that the patient would understand. I don't think the WHO can make a regulation about that, but I'm sure you're sensitive to that. Sometimes when communicating with people, especially with older people, if it's not in their own language, their own family becomes much more important because they can speak to them in a language they can understand.
If I understand correctly, while dementias are a condition, is there some pain related to dementia? As people grow older, they do not really like to admit that they are losing their faculties or that they are forgetting things. We like to think that we can do everything for ourselves. My father, who was 95, always used to say to me, "Do not walk right next to me because I do not want people to think you are helping me." I had to walk a few steps behind when we went for walks. He did not want to be seen with me close to him. I am Greek. This is why I talk about cultural differences. My father was a Greek man and he wanted me to know that he did not need me to hold onto him.
Is there something that can alert us for ourselves? Is there a pain that's not related to other conditions we have that might make us think that maybe we do need help or make me think that maybe my father needs a little more help than he lets me think he does?
Dr. Saxena: What you are asking, perhaps, is whether there is any pain, either physical or psychological, that may be associated with losing the cognitive abilities that people have. Certainly people have reactions to their own decline in their cognitive abilities. Some people react with anxiety or depression. The incidence of a depressive illness associated with dementia is actually quite high because cognitive ability is lost. It's just like any other loss, and it can give rise to depression.
Dignity and respect to people with dementia should be central to any care provided, whether by informal caregivers or formal caregivers. That is something that we need to respect them for. Their preferences and priorities need to be very much kept in mind as we develop the care packages for them. Many times people with dementia find it difficult to accept that they're not able to do things that they were able to do earlier. That has to be dealt with in a suitable manner, of course keeping the safety of the person uppermost in mind. After that, there must be consideration given to their preferences and preservation of their dignity and the respect that each human being, whether with dementia or without, is entitled to. Those are elements that need to be integrated into the services and the information given to the family members so the best compromise can be arrived at between safety and the preferences and priorities that people associate with declining abilities.
Senator Merchant: Thank you, doctor.
Senator Eggleton: At the beginning of your remarks, doctor, you gave a definition of dementia. I have a text in front of me. I think it's consistent with what you said, but this description says that healthy aging or normal aging can be associated with some memory loss. Dementia, however, refers to a progressive condition that robs a person of much more than the occasional ability to recall events, names or ideas. Dementia is a progressive condition of cognitive decline. Unlike age-related forgetfulness and mild cognitive decline, dementia has a profound effect on an individual's ability to live and function independently.
First of all, do you agree with that? Secondly, how does the average citizen know when they've crossed the line? The average citizen may sometimes be reluctant to go to a doctor. Quite frequently the average citizen can be in denial about a condition. We all forget things from time to time, myself included. How do you know when you're getting the onset of dementia? As you point out, early detection is very important, but how does the average person know when to go see the doctor? You don't want to go see the doctor just because you forgot the name of a friend for a couple of hours or forgot an appointment or something that is perhaps mild. You've also got to at some point recognize, or your family has to recognize, if it's getting more serious. How can we help people to understand when they've crossed that line?
Dr. Saxena: You've raised a very important question around which there is some information and some experience from the literature from many countries. I do agree with your proposition that dementia is a degenerative brain disease and is not the same as normal aging, which all of us experience. All of our body organs show changes as we age, brain included. Those are normal aging changes that are very different from the disease of dementia, which is included within the international classification of diseases as a health condition or a disease. The tenth edition was the latest.
Having clarified that, the question you are raising is how do people know that they might be suffering from dementia? There are various ways in which early identification can be facilitated.
For the person himself or herself, there is the personal experience of a rapid decline rather than a very slow and imperceptible decline, which indicates the person might be having dementia. To forget a few things is okay, but to forget things that interfere with your daily and expected life situation is something that should alert people that they might have the onset of dementia. As you correctly pointed out, it's the memory functions that are usually but not always the first ones to be lost.
On the part of the family members — and I would add on the parts of colleagues and friends who have observed the person for a period of time — again it is a matter of whether there is a rapid decline in cognitive functions but also a change in people's behaviour and daily activities that cannot be explained by other factors that would be an alert for seeking help.
The most important issue here is, what happens to the person when he or she seeks help? Unfortunately, at least on a global basis, there is a big problem with the general doctors and nurses not being trained enough to identify dementia at an early stage. We have experience from many countries that the knowledge and skill level of general health care providers — I'm not talking about the specialists — is much less than what would be required. As a routine, for any person who is during the ages where dementia is common, there should be a routine check on the cognitive functions to see whether the person might be having dementia, whatever the reason the person might be seeking help. It's not necessary that the person is going for suspected dementia. If the person is going for diabetes or for any other illness, it should be a routine check by the health care provider to see whether dementia may be present.
This becomes even more important if there are risk factors for dementia in that person, which includes the non- communicable diseases, including cardiovascular illness, high cholesterol, obesity, lifestyle which is different, including smoking, as well as use of alcohol, which incidentally is one of the risk factors for dementia, and presence of any other risk factor which might predispose a person for dementia. In the presence of these, it becomes even more important to screen the person for dementia using standard technologies that are there, including cognitive functions as well as physical tests that would be done.
I must say that even in many developed countries, the identification rate for dementia is 50 per cent or less, which speaks to the ignorance around this within communities as well as within the health care system.
Senator Eggleton: One supplementary question on this: Is there any one country that has a better handle on this than others?
Dr. Saxena: It will be difficult for me to answer that question, and I would not identify a single country. However, highly developed health care systems, including in some of the Nordic countries, in Australia — and I must add, from the information that I have available, Canada actually has a fairly well-developed system for identification and care for people with dementia. These are the countries that are setting good examples within the high-income countries. Obviously, the situation in low-income countries is vastly different, and there is a lot of learning to take place between different countries.
Senator Raine: Would the Montreal test be a good test to be done, say, in annual check-ups over a certain age, or with all the other factors? We have heard of the Montreal test.
Dr. Saxena: Are you referring to a particular instrument? I could not hear your question completely.
Senator Raine: We heard yesterday about a test called the Montreal test, which is a screening test for Alzheimer's.
The Chair: It was the Montreal Cognitive Assessment Test.
Dr. Saxena: I am not fully familiar with this particular test, but I am aware that there are many tests that have been validated within the populations across countries that are helpful in screening people with dementia. I would say that use of a standardized and validated test within the various countries and communities would be a good way to go forward. One has to see which test is more useful for the local population and for seeing cultural and linguistic variations that may be there. I am unable to specifically comment on this particular test.
The Chair: Thank you very much, doctor. You have been enormously helpful and tremendously informative with regard to the world response in this particular area.
On behalf of the committee, I want to thank you very much for appearing on behalf of the WHO, which is a widely renowned contributor to our knowledge on health around the world.
With that, I will declare the meeting adjourned.
(The committee adjourned.)