Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue 17 - Evidence for June 4, 2003
OTTAWA, Wednesday, June 4, 2003
The Standing Senate Committee on Social Affairs, Science and Technology met this day at 3:38 p.m. to study on issues arising from, and developments since, the tabling of its final report on the state of the health care system in Canada in October 2002. In particular, the committee shall be authorized to examine issues concerning mental health and mental illness.
Senator Michael Kirby (Chairman) in the Chair.
[English]
The Chairman: Senators, we are here to continue our study of mental health. I have to go into a very short call, but we will start and Senator Cordy will take the chair. Let me tell everybody who our witnesses are today. We have David Conn, who is the co-chair and president of the Canadian Academy of Geriatric Psychiatry; from St. Joseph's Health Care in London, Ontario, we have Maggie Gibson, who is a psychologist; from the Alzheimer's Society of Canada, we have Steve Rudin, who is the executive director; and from the Hamilton Health Services Centre, we have Venera Bruto, who is also a psychologist.
When we were in Montreal, and we divided into two panels, part of the group that I was with went to what I always call MacDonald College — the Department of Defence Centre for Geriatric Medicine — and had a very interesting insight. I must say, frankly, it was a troubling one in terms of the nature of that awful disease. We are delighted that the four of you have agreed to come today.
Our format is that we would ask each of you to make a brief statement. We are all capable of reading your written material. In this committee, we like to ask questions, therefore I will ask you to hit the highlights of your statement and then we will turn to questions.
Senator Jane Cordy (Acting Chairman) in the Chair.
Dr. David K. Conn, Co-Chair; President, Canadian Academy of Geriatric Psychiatry, Canadian Coalition for Seniors Mental Health: Honourable senators, I am a geriatric psychiatrist working at Baycrest Centre in Toronto. I am also president of the Canadian Academy of Geriatric Psychiatry and co-chair of the Canadian Coalition for Seniors' Mental Health, which represents more than 65 organizations from across the country.
We would like to thank the committee for inviting us to present on the unique issues facing seniors' mental health. With the rapid growth of the aging population, there will be an unprecedented increase in the number of seniors with mental illness, with an equally striking demand on the system's capacity to address their needs. I would first like to underline some key issues facing this population.
Seniors suffer from a wide array of mental illnesses, including mood, anxiety and psychotic disorders, in addition to the emotional, behavioural and cognitive complications of a variety of brain diseases such as Alzheimer's, stroke and Parkinson's disease.
Mental disorders among seniors are frequently misdiagnosed or missed altogether. There are very high rates of mental disorders among certain groups — for example, the residents of long-term care facilities. Behavioural symptoms, such as physical aggression or agitation, frequently have serious consequences, including injury, caregiver distress and premature institutionalization.
Caring for seniors is a complex affair. Older seniors — those over the age of 80 — are commonly frail, have coexisting health conditions and are frequently taking multiple medications. We know that we have effective treatments, but those in need often do not receive them. On the other hand, inappropriate or sub-optimal use of psychoactive medications is an issue of major concern. This can represent either overuse of medications or, in some cases, underutilization.
There is a distinct lack of public awareness about these issues. The training of front-line staff is often woefully inadequate, although there are some recently developed model programs in a few areas of the country that are demonstrating some success. Family caregivers experience extraordinary levels of stress over long periods of time. There is a desperate need for available mental health services for seniors, which need to be comprehensive, coordinated and integrated with the rest of the health care system.
There is a particular need for effective community outreach services, so that seniors who require assessment and treatment in their homes can be adequately cared for. There is a serious lack of research and information regarding this population. Primary prevention is a vitally important goal, but effective strategies remain elusive.
We would like to begin by suggesting that the federal government, in collaboration with the provinces and other key stakeholders, jointly develop a national action plan for mental illness and mental health. Within that plan, there needs to be a specific focus on seniors and their unique needs and issues.
I would like to focus our attention to the following areas: public awareness, education, systems of care, human resources, research and caregivers. For each area, I will put forward one or two suggestions.
Regarding public awareness, there is a growing need for public education about mental problems associated with aging. Mental illness is not a natural part of aging, nor does it have to be seen as shameful or an embarrassment. A lack of knowledge regarding the early signs of mental illness and potentially effective treatments prevents seniors and their families from accessing much-needed services on a timely basis.
Indeed, early identification contributes to better treatment outcomes. For example, timely diagnosis can allow for the use of newly discovered therapies, which can slow the progress of Alzheimer's disease. In addition, early identification of depression may reduce morbidity and also decrease the instance of suicide in seniors. It is important to note that the instance of suicide among men 80 years of age and older is the highest of all age groups in Canada. We recommend that the federal government provide funding for the development of a public education campaign to increase awareness of mental health concerns in seniors.
In reference to education, the number of health care professionals with training in geriatrics is completely inadequate. We need to ensure that geriatric education is part of the core curriculum for all health care disciplines, and receives appropriate emphasis. Geriatric specialists are currently in short supply and demographic trends will further exacerbate the situation.
In long-term care facilities, 80 per cent of residents suffer from some form of mental disorder. Indeed, nursing homes have been termed "the modern mental institutions for the elderly." Yet, the staff in these facilities receive very limited training with respect to mental health problems.
Educational strategies are especially needed which target front-line workers in both the community and institutions. This could be achieved through collaboration of the federal government, the Canadian Council on Health Service Accreditation and other key stakeholders. The minimum standards defined within the accreditation guidelines should include a specific number of hours of education for all staff in long-term care facilities and home-care agencies.
With respect to systems of care, there are vast discrepancies in the availability of mental health services between different regions of the country, with very limited availability in rural areas and smaller cities. In most regions, services that do exist are poorly coordinated, not comprehensive, and do not have the capacity of serving multicultural communities. Community outreach is an essential component of geriatric care, as many seniors are reluctant or unable to leave their homes.
Telehealth allows specialized assessments and education to reach remote areas. We would like to see sponsorship of a national best practices conference focusing on seniors' mental health so we can all learn from the best of what is available across the country. A national committee should be created to develop evidence-based guidelines on assessment, treatment and service delivery models; and funding should be made available to support the development, dissemination, implementation and evaluation of these guidelines. We also recommend provision of financial support for geriatric telehealth initiatives, which can provide remarkably effective mental health consultation and education to rural and remote areas of the country.
The members of our coalition and academy believe one of the most significant barriers to seniors' mental health is the shortage of human resources. It is difficult to recruit and retain qualified staff. Long-term care settings are particularly vulnerable to high rates of staff turnover. More information is needed regarding the specific human resources required to effectively deliver care, and how we can create work environments that will attract qualified professionals and front-line workers. We recommend support for a national health human resources strategy that includes issues specific to seniors' mental health.
There is currently relatively little research being conducted in Canada on seniors' mental health. Although there is some very limited funding for Alzheimer's disease, much more is needed for the full array of mental health issues. There is no organized research agenda that focuses on seniors' mental health. Furthermore, there is very little data collected nationally to allow us to understand the instance and prevalence of various disorders, as well as the outcome of treatments and programs for seniors' mental health.
We recommend that a workshop be supported by the federal government and coordinated by key stakeholders, to establish seniors' mental health research priorities. The results of the workshop should lay the foundation for targeted funding for geriatric mental health research. This should be supported through the Canadian Institutes of Health Research, CIHR, and the Canadian Health Services Research Foundation, CHSRF, with a goal of enhanced funding for basic clinical and health systems research. CIHR, in collaboration with the provinces and territories, should be encouraged to create a working group to collect data specifically related to seniors' mental health in both community- based and long-term care settings.
Family caregiving is a tremendous task. It places immense demands on time, resources and emotions. Due to the enormity of the task, caregivers of older people have very high rates of depression. The economic value of family caregiving is enormous. Family caregivers provide the majority of long-term care in Canada and save the public system billions of dollars.
However, supports to family caregivers are limited, usually insufficient, and mostly geared to the needs of the ill family member — not to the needs of the caregiver. We recommend the provision of family caregivers with the necessary supports to successfully provide care, including sources of relevant and meaningful information and the availability of appropriate levels of respite care and home care.
We also recommend the provision of tax credits or tax breaks to reflect actual costs for out-of-pocket expenses incurred by caregivers. It is also important to continue to review and make changes to employment insurance pension plans and labour codes to accommodate the requirement of caregivers to take time off work when necessary without risking job loss.
I would like to end with a quote from C. Everett Koop, a former U.S. surgeon general: "The capacity of an individual with mental or behavioral problems to respond to mental health interventions knows no end-point in the life cycle."
Mr. Steve Rudin, Executive Director, Alzheimer Society of Canada: Honourable senators, on behalf of the Alzheimer Society of Canada I am pleased to have this opportunity to appear before your committee to provide some background and insight about Alzheimer's disease.
Alzheimer's disease is the leading cause of dementia. It is characterized by symptoms that can include loss of memory, impaired judgment, reduced capacity to reason, changes in mood and very challenging behaviours. It is a progressive disease that was first described by Dr. Alzheimer, a German neurologist and psychiatrist, in 1906.
Significant physical changes occur in the brain as a result of Alzheimer's disease. Brain cells shrink or disappear and are replaced by plaques and thread-like tangles that eventually destroy living brain cells. People with Alzheimer's disease and related dementias may use services associated with mental illness and some with the disease may even experience psychiatric symptoms such as delusion or depression. Alzheimer's disease is a very significant social problem and the Alzheimer Society of Canada has dedicated itself to finding the causes and a cure for the disease.
Currently in Canada, there are 360,000 people who are affected by Alzheimer's disease and the related dementias. That represents one in 13 people over the age of 65 who suffer from Alzheimer's disease and one in three over the age of 85. In addition, thousands of caregivers are required to look after those people and they too, suffer the effects of the disease indirectly. If there are no changes to the current situation, within the next two or two and a half decades those numbers will rise to about 750,000 Canadians affected by the disease.
Alzheimer's disease is a woman's disease. Two-thirds of those affected by Alzheimer's disease are women, and most caregivers are women as well. The reasons for the difference in the incidence are currently being investigated.
Approximately one-half of people with Alzheimer's disease are still residing in the community; the other half live in care facilities. The toll on caregivers is profound. Symptoms of depression are almost twice as common among caregivers of seniors with dementia than for caregivers of seniors without dementia.
The economics are equally staggering. Currently, about $5.5 billion is being spent to care for people with Alzheimer's disease. The time lost from work by people taking time off to look after people, take them to appointments and so on, is currently estimated at about $3 billion.
In the brief, I have cited two case studies of people currently living in the community whose situations are very different. One individual is living with his wife. He was a police officer who was diagnosed with Alzheimer's disease a couple of years ago. He is finding that as the disease progresses he is unable to do things that he was able to do with ease before. His wife is his caregiver. He is relatively fortunate in that he has someone to look after him.
The other case referenced in my brief is that of a woman living on her own. When she is no longer able to do the things she currently does, she will have to face placement in a facility. She is not looking forward to that, as no one would.
There are a number of issues is in the material, which you can read yourself. It is also in materials we have published and are available on our Web site.
Like Dr. Conn, we believe that there are some significant public policy issues that can be of great assistance to people who struggle with Alzheimer's disease. I think you will notice some striking parallels in our presentations. Home care is of significant importance to people struggling with Alzheimer's disease, and this not only for the individual with the disease but also for the caregiver. It is important to provide care for the sick individual as well as respite care for the family.
Disability tax credits, along with compassionate leave income protection programs, which have started to be implemented by the government, are particularly helpful. We would encourage greater efforts in that regard.
Pharmacare has been introduced recently. Programs of pharmacare must include the provision of the limited medications for people who are struggling with Alzheimer's disease. Both people in the two case studies referenced in our material are currently taking preparations that assist them and allow them to continue to function in the community.
We, along with most people are involved in the area of Alzheimer's disease and mental illness, would encourage additional efforts in research. We laud the establishment of the Canadian Institutes of Health Research and the funding they have received. We encourage even greater investment in that area.
While we work to create a world without Alzheimer's disease, programs of support for the more than 360,000 Canadians living with Alzheimer's disease will be required.
Our prayer and hope is that, as this disease was first identified in 1906, 2006 would be the appropriate year to announce that we have found a cure for it.
Ms. Maggie Gibson, Psychologist, St. Joseph's Health Care London: Thank you for the opportunity to be here today. I will speak to the highlights of my brief, as I understand that you have it before you.
We use the word "seniors" a lot and talk about "seniors' disorders" and "seniors' mental health." However, seniors are the most heterogeneous component of the population. Some 80 to 85 per cent of seniors are aging in health and wellness. There is, however, another significant component of this population who really need support — social support, health support and psychological support — if they are going to survive, and this is the group we are primarily talking about today.
Following the outline that you provided in your request for consultation today, I will speak briefly about the five areas you identified.
The first was depression and dementia. The point I want to make here is that while depression and dementia are prevalent among the seniors who have mental health issues, there are many other concurrent overlapping conditions such as chronic pain, anxiety disorders, neurologically based apathy disorders and disordered sleep patterns. There are many conditions that have overlapping symptoms and require overlapping and integrated treatment courses.
The challenge is that you must coordinate those treatments. There are many guidelines out there that can assist you to treat depression, pain and anxiety, but the challenge for this population is to integrate those treatments. That is not easy.
Often, the treatment recommendations almost conflict with each other. For example, pain management best- practice guidelines will tell you that you need to include psychoeducational intervention so that people can become participants in their own care, but for people with significant dementia that does not work. Depression guidelines will tell you that you need to increase people's opportunity to access rewarding environmental opportunities and pleasurable experiences, but for people with significant neurologically based motivational deficits, they cannot take advantage of those situations.
There is an urgent need for the development of sophisticated, evidence-based, research-grounded, and best-practice guidelines to assist people who practise in this area to develop integrated programs that allow us to treat the co- morbidity that presents in the mental health conditions of seniors.
Two of the really critical questions are, first, how does the co-morbidity that is common in this population influence the implementation of best practices for different conditions; and, second, how does that co-morbidity influence the achievability of outcomes? In other words, what is the target? What is the goal? How will we know when we are doing optimal mental health care for this population? Practitioners on the ground do not know right now.
The second issue you identified is concurrent disorders — specifically addiction. We know that alcohol abuse and misuse is associated with numerous other problems in this population, including social isolation, chronic pain, increased risk of falls, exacerbation of heart disease, and diabetes. It is also associated with abuse both in the abusers and the abusing. We know that, there is an uneasy fit between mental health services and addiction services, in general, again, because of the issues of co-morbidity. For example, addictive disorders and intoxication can impede both drug and non-drug treatments for depression or dementia. Depression can impede participation in the group therapy programs for addiction.
Again, you have these challenges of integrating treatments for people who have both addiction and mental health problems. You also have a situation where the programs tend to be better tailored to the needs of younger people than they are to older people, who may need different pacing of the treatment, have had the condition or the alcohol problem longer, have other co-morbid conditions interfering.
A key question in the area of addiction and alcohol treatment for seniors with mental health problems is whether the existing programming for addiction services should be developed to better meet the needs of seniors — including seniors with mental health conditions — or whether we should be stepping back and redesigning addiction treatments for the elderly within existing geriatric health programs. In other words, where ought we to be positioning addiction treatment programs for the elderly to get the most efficacious treatments?
With respect to the issue of gender differences, gender is well recognized as an issue in the area of caregiving because there are sex differences in the life expectancy. Husbands tends to die younger than their wives, so senior men are more likely to have had a spousal caregiver at home than are senior women. What is really interesting is that, with the changing demographics, words more and more people over age 65, have living parents. We are moving into a really interesting new constellation of the "sandwich generation" where you have people who are 65 or 70 years of age perhaps participating in the care of grandchildren, helping their children, and potentially caring for 85 or 90-year-old parents as well. We do not know what that will look like and we do not know what those women will make as their choices when they find themselves increasingly in that situation. That is going to be interesting.
The other issue that is important around gender with respect to developing mental health services is to acknowledge that we do not want to "genderize" health care; we need to look at individuals when developing care plans for individuals, but for health promotion and prevention, we need to recognize that there are gender-based group differences. Men tend to have riskier lifestyles. They are more likely to smoke, drink regularly or in larger amounts, and to adopt self-destructive behaviours in response to emotional turmoil. They are less likely to seek medical assistance and less likely to have social networks to support them. In terms of health promotion and prevention, there are gender differences in the elderly group as in other groups that need to be identified so that those promotion efforts are targeted most effectively.
With respect to the issue of access to and continuity of mental health services, older adults, like everyone else, wait in line to get publicly funded mental health services. As we look at the issue of expanding access, it will be important to include the elderly, and the elderly in nursing homes and long-term care facilities, as well as other segments of the population. However, the significant challenge in the area of access is increasing the interest, readiness and opportunities for mental health providers to work with the elderly, including the most vulnerable components of the elderly population. Right now, that is not the career choice of the majority of mental health providers.
If you take professional psychology as an example, the full spectrum — including clinical, counselling, health psychology, and neuropsychology — is applicable to the needs of seniors. However, there is an urgent need for a concerted effort by the psychology community and other professions with a stake in mental health for the elderly, to strategize with partners in governments, universities, colleges and other training programs, professional regulatory bodies, advocacy groups and members of the lay public to figure out how we will meet the present and emerging mental health needs in the aging segment of the population. If the floodgates opened right now, we probably could not fill all the positions.
With respect to the issue of family and caregiver stress, I want to comment on the issue of stigma — in particular the neglected stigma associated with using long-term care services. We would benefit greatly from a cultural shift that takes a compassionate and pragmatic approach to identifying the best care options for both older people and their family members and allow for dependency, when it is part of the system. Systems that allow for dependency without devaluing people go a long way to improving mental health.
In their later years, older adults probably will need to access a combination of services, including acute care, home care, respite care, long-term care, short-stay admissions and long-stay admissions if they are to have the optimal quality of life possible. We need to move the discussion that is sometimes structured antagonistically on the basis of location of care to a discussion of where are the optimal services provided and how do we best meet complex biopsychosocial needs and how do we accommodate the needs of all members of family and community?
There is a real need for a more equitable acknowledgement of the potentially supportive role of all sectors of the continuum of care.
In summary, I have five recommendations. First, research priorities in the area of seniors' mental disorders should include development of best-practice recommendations focused on treating co-morbidity. Second, informed decisions should be reached as to where and how the needs of seniors with addictions are best met within the health care system. Third, mental health promotion and prevention activities should address gender differences in risk factors, social behaviours and coping patterns. Fourth, stakeholders should work together to increase availability of mental health professionals with expertise and interest in caring for seniors with mental health problems. Finally, biases that impede optimal utilization of the full continuum of care should be identified, challenged and eliminated.
Ms. Venera Bruto, Psychologist, Hamilton Health Sciences Centre: I would like to thank the committee for inviting me and for considering the importance of mental health services and mental health issues for seniors in discussion of health care delivery.
My comments are from the perspective of a psychologist with practice in clinical neuropsychology — primarily with neurological and medical populations — who also does clinical research. I will focus on issues that have not been raised thus far. Obviously, there will be many overlaps in our comments and I wholeheartedly support the remarks of the previous speakers. I will start by highlighting some numbers that I think require some emphasis.
One of the sets of numbers suggests that there are 188 women to every 100 men between the ages of 65 and 69 and 241 women to every 100 men over the age of 85 years. This has huge implications, not only because the experiences of men and women are different in our society but also because the gender and sex may be a predictor of different outcomes after different kinds of brain injuries such as stroke. The outcomes following stroke may be different in men and women. These differences may have implications for assessment, for diagnostics and for treatment of our senior population.
Another area that I would like to highlight with the increasing aging of our population is the discussion about increases in numbers of Alzheimer's disease, vascular dementia, other kinds of dementia and depression. Another group that requires some underscoring encompasses the cognitive and mental status changes that can occur with medical disorders.
An aging population means increased numbers of individuals with changes in mental status that are secondary to medical disorders, such as heart disease, renal disorders, diabetes and hypertension. These can ultimately result in significant cognitive impairment or dementia.
Delirium or encephalopathy has been observed to be present in approximately 30 per cent of elderly medical patients. Published prevalence rates in hospitalized elderly have ranged from 10 per cent to 40 per cent. Studies suggest that 58 per cent of individuals with heart failure present with episodes of confusion; 77 per cent of individuals with heart failure demonstrated deficit in the ability to perform at least one instrumental activity of daily living; and 53 per cent of these individuals achieve scores on a brief screening measure of the severity of the dementia within the impaired range. We do not typically think of these kinds of populations as presenting with cognitive impairment but these deficits exist and they are significant in their impact on level of function. They can have implications for the amount of care that the person will require.
Given the relatively high prevalence of cognitive impairment and confusion in seniors with heart failure, the observations of other investigators suggesting that hospital readmission for heart failure is often associated with non- compliance and behavioural factors may have significant implications. The growing numbers of individuals requiring care will challenge individuals, their families and health care systems; will place tremendous demands on specialized mental health services; and will have significant implications for health care economics. Moreover, the effective diagnosis and treatment of these disorders has significant implications for the quality of life of Canadians and has special implications for senior Canadian women. Delirium and depression have been shown to increase medical morbidity, mortality and hospital lengths-of-stay among medical patients. Dementia and stroke are the leading causes of adult disability and entry to long-term care.
There are significant complications that psychological, psychiatric and neuropsychological impairments can pose for the elderly population. There are also significant challenges to diagnoses and treatments in these groups. Lessons learned from younger adults may not be directly applicable to older populations. Older populations are different in many important respects: Our biology is different as we age, the brain changes as we age and our response to medication changes as we age. In addition, we often present with a number of co-morbid conditions such as heart disease, stroke, renal disease, diabetes and chronic pain that can increase illness burden and can complicate diagnosis and treatment.
Our social networks and resources are different as we age. The social system responds to us differently. Family resources, money, social supports and societal expectations are different. We are only beginning to understand the implications of these factors. There can be complex interactions of medical, neurological neuropsychological, psychiatric, psychological and social factors in older adults.
The bottom line is that we cannot simply pretend that the older person is a younger person with wrinkles and silver hair. The age of the person is a significant and important factor in diagnostic issues and this leads us to questions about continuing education of providers. There is a desperate need for reducing the disparity amongst the skill sets of providers across the system.
The nature of cognitive deficits is often complex and may sometimes be unobservable at office visits. Certain kinds of mental health issues that are present in the elderly are often undetected by clinicians. Detection may require not only knowledge of the phenomena but also specialized evaluation methods and expertise in test interpretation. Interview method and observation may be insufficient.
Another barrier to care is our multicultural and multilingual Canadian society, which brings us much richness but which can sometimes be a barrier when the person that requires consultation speaks one language and the assessor speaks another. We will have to consider this an issue in our policies. The use of translators in the absence of normative standards raises significant difficulties for valid diagnosis.
The kinds of recommendations that are going to be important for this population will have to do with the development of a national agenda for clinical service delivery for seniors. As previously stated, the identification of best practices is complicated by the fact that we are lacking significant research on how to apply treatments and modalities that have been used with younger adults in older populations. For example, in the case of prevention and in the case of behavioural change as a source of prevention, we know a great deal about how to change behaviour and about how to put together treatments for behaviour change in younger populations. There is next to no research on how to put such programs together for older groups that present with co-morbid conditions that complicate treatment. Asking a younger person to participate in increased activity and increased exercise as a way of reducing hypertension and contributing to the overall care of that person's heart and brain health may be one thing in a young person who does not carry chronic pain, osteoarthritis and exercise intolerance due to heart disease and other co-morbid conditions that complicate the behaviour change tremendously.
We also require a national plan for professional education to meet the needs of the population as it ages and perhaps the development of core competencies for each regulated health profession focusing on dementia, encephalopathies, depression and neuro-behavioural changes. This establishment of core competencies will require the coming together of university training programs, professional colleges, regulatory bodies, professional associations and other stakeholders to support a national plan. Other organizations and groups have worked on similar types of strategies for stroke in the Province of Ontario and could probably provide important information on how to go about developing such plans.
As a psychologist, I am struck with the tremendously few psychologists who actually work in areas that service seniors, even though this professional group has a lot to offer in both diagnostic assessment and in treatment. One of the barriers has to do with some of the issues that Dr. Gibson mentioned with respect to preferences and choice, but there are also some funding barriers for this professional group that require some attention.
Lastly, there is need for research priorities to be set in the area of mental health and age-related brain disorders that focus on cognitive mental status and behavioural changes. Much attention has been paid to cognitive impairment, but just as important and just as disruptive to the quality of life of the individuals affected and their caregivers, both professional and family caregivers, are the neuro-behavioural changes that can occur.
We need to test these best practices and service delivery models. There are a lot of hints that we can get from the current literature, but it will require a certain amount of evaluation and testing to ensure that it actually does apply to the elder population.
Senator LeBreton: I just have one question for Mr. Rudin. When you talk about women being affected more by the disease than men, I am interested to know what accounts for that. We know there are more women who are older. Is it because of that, or is just that this disease affects women more? If so, has your research indicated why that would be the case?
Mr. Rudin: The research has not indicated exactly why that is the case in terms of the frequency. Certainly in terms of the other aspect, the caregivers, I think it is just the numbers of women and average life expectancy, as well as the social roles that women have traditionally played as caregivers. In terms of the actual prevalence of the disease amongst women, no real answer has been determined just yet.
Dr. Conn: I think that is true. One interesting consideration at the moment is the issue of estrogen, female hormones, because there is definitely some evidence that estrogen may protect the brain from degeneration. A number of studies suggest that women who stay on hormone replacement may actually have a lower risk of dementia over the years. That could be a factor. I think it is basically the demographics that really dictate why so many more women than men have Alzheimer's disease.
Mr. Rudin: As a follow-up, last week results were announced in the Journal of the American Medical Association that talked about combination hormone replacement therapy as doubling the risk for women over the age of 65 for Alzheimer's disease and dementia. The good news came in November of last year, and the not-so-good news came about a week or so ago.
Senator LeBreton: The ones with just estrogen seemed to do better than the ones with the combination.
Mr. Rudin: It was the combination.
Senator LeBreton: I wondered if it was biological. There is a different generation of women now, but could it be lifestyle? Women are now in the workforce, but the women who are now really old were not. Is there a kind of social aspect to it? They just did not tax their minds. I am wondering if there is any link there.
Mr. Rudin: Not being a physician or scientist, I am on shaky ground. I know of a number of studies that have tried to address those specific issues. The nun study in Minnesota was one where they investigated an order of nuns, and I do not think they found any particular differences amongst those who had led a more active intellectual lifestyle and so on. Those are the aspects that are of significant interest to the scientific community and currently more research is required to determine exactly why it is that those numbers are what they are.
Ms. Bruto: There are some hints in the literature that might — in the end — relate to your question, although there is nothing definitive.
There are changes in the way that the brain is organized in males and females. It is true in kids when you look at the normal development, with differences in the development of language skills and visual spatial skills as they grow. Different disorders present differently and the numbers are different in little boys and little girls for things like dyslexia. In adults and in seniors, the differences in brain organization that we have seen in other studies may have some implications for how the brain breaks down when things go wrong. For example, there is some evidence that, in stroke, with similar kinds of lesions in similar places in the brain, the disturbances you see will be different in males and females, so the language impairment following a left hemisphere stroke may be more significant in men than in women.
It may not be that big a leap to look at the role of estrogen and its interaction with coenergic systems that have been implicated in the development of Alzheimer's disease. There may be differences in how the pathologies present, in addition to the fact that there are more women around and so we see it more frequently.
Senator Fairbairn: Has anyone, to your knowledge, done a study on the ability to read and the continuity of reading among older citizens as having a positive effect on keeping the mind active and functioning? I have often found, when visiting some of the long-term care places, a great sadness. With all of the hours to spend and not a lot of visiting, those who still get pleasure out of books seem to be a little more engaged.
Ms. Bruto: You are asking a very complicated question. Are those folks who are more likely to get enjoyment out of reading and activities, the ones who are also less depressed? We know that depression is a significant negative impact on adjustment to illness and adjustment to disability. It can have a huge impact on how someone recovers and deals with adversity.
In addition, we know that in the event of Alzheimer's disease or any other kind of brain injury, individuals with higher levels of education have higher intellectual functioning and sometimes these things are correlated with interests such as reading. I do not know of any one who has looked at reading per se, but if you look at some of these correlates, they do have a protective effect. It is a positive thing.
If we manipulated and tried to get people involved in those activities, will it have a beneficial effect? I do not know of any studies that look at that directly. One positive thing is that, even in patients with Alzheimer' disease who have language impairments, reading is one of the later things to deteriorate. It would be something to try the harness if we could.
Mr. Rudin: A number of epidemiological studies have tried to address that question. The next jump is to establish the scientific evidence and the reasons for it.
Some investigations suggest that reading and doing crossword puzzles is very positive. It also may well be a metaphor for a number of other lifestyle choices or opportunities that people have had such as higher education, developing a passion for reading, or where they chose to live.
Those are the links where the science becomes important in terms of trying to find out why this seems to be true in numerical studies. However, is there a scientific base for it? The question is a very complicated one. We only have answers thus far that are really very much at the surface.
With your support, we will continue to bore down in terms of the research we have addressed. That is a significant issue that comes out of this. We know a lot less than we would like to know in order to solve these problems.
Senator Pépin: Is Alzheimer's disease hereditary?
Mr. Rudin: Once again I will defer to Dr. Conn after giving the quick answer. There is a hereditary link in about 10 per cent to 15 per cent of the cases that have been identified. That aspect has been well studied. There is a great deal of good Canadian research that has answered that question.
Dr. Conn: It is particularly true for those that develop Alzheimer's disease at a young age. We call it "pre-senile dementia." People who unfortunately develop the disease in their 40s or 50s have a higher rate of a genetic component. There are also some genetic markers that seem to be linked in older people who get Alzheimer's disease. There is a somewhat increased risk genetically, but not the way in which it exists for somewhat younger people.
Senator Morin: I would like to address my questions to Dr. Conn. We are always surprised to see the high incidence of depression in old age. The elderly have the highest suicide rate. As you stated, early treatment of depression will cut down the number of suicides. Also, the early diagnosis of Alzheimer's will slow the course of the disease.
I think that you said that about 10 per cent of depressions are well treated in old age, which is much lower than in other age strata. Only 50 per cent of Alzheimer's cases are recognized early.
Would that be a priority for your organization? You are talking about the necessity for national guidelines. You are the people who should be setting these guidelines. You should ensure these clearly worded and easily understood guidelines are circulated throughout the community.
With respect to prevention, is there any good evidence-based prevention that can be used for either of these two conditions or other conditions common in old age? If so, maybe that would be one area where the federal government could be help. The federal government was successful in cutting down the number of smokers. It is a Canadian success story. Canada is now addressing obesity in kids. I am sure it will be effective.
This is another social problem that is widespread, but not as well publicized. If we had specific preventive methods from your group, it would be one area where the federal government could really help.
Finally, I would like to talk about the setting in which these patients are treated. Home care has really not been neglected both by Romanow and our committee. Both committees addressed the issue of acute home care, however, we were careful to not address chronic home care for various reasons. We really took care not to include it in our recommendations. Neither Romanow nor this committee uttered a word about long-term care settings. Yet, these are the settings in which those patients will be increasing.
I read in your document that long-term care settings are really mental health institutions — the great majority of patients in those settings have mental health issues. We need a number of recommendations that addresses these two settings. We have to be realistic, of course.
How can we help? What can we do in a concrete way? We were specific in our recommendations regarding acute home care. We need some guidance here in these two areas.
I am a strong believer in role of nurse practitioners. I always felt that they are important in long-term care and both home care. We need nurse practitioners who are familiar with the problems of psychiatric patients and the elderly. There is a shortage of family physicians. We want to involve them in primary care teams.
The Acting Chairman: Senator Morin, I think they are trying to absorb all your questions. Perhaps they can answer these and you could then ask other questions.
Senator Morin: I am done.
Dr. Conn: Thank you for those excellent questions. I know that my colleagues will want to contribute. Perhaps I will start.
Senator Morin: I would like that you start because you are the head of the coalition that involves psychologists, nurses and so forth. As president of the coalition that encompasses all the professions and groups that are involved, I would like to have your opinion.
Dr. Conn: Thank you. The first question you mentioned related to the whole issue of early diagnosis and how critically important this is in the health care professions in terms of making early diagnosis both in the area of mood disorders, depressions, Alzheimer's and other dementias.
The coalition and the academy want to work in this area to improve the performance of health care professionals across the country. We think that having guidelines in place would be helpful. I struggle with the issue of guidelines versus national standards. In Canada, we tend to be afraid of national standards, but other countries in the world have created standards — that is, expectations — for how services are provided. In Great Britain, they have produced national standards for seniors' mental health care. How well they will be adopted, I do not know. It is an interesting process.
Certainly, we want to go as far as guidelines. We think having a national best practices conference in the near future and setting up a national committee to develop these guidelines would be very helpful.
On the positive side, I do think that we are doing a little bit better, in recent years, at diagnosing depression. For years, we talked about the under-diagnosis of depression and how family physicians missed depression all the time. I think family physicians are doing a much better job in recent years, that education has paid off, and we see great progress. The use of antidepressants has increased significantly across all age groups. That is a positive thing. I know the pharmaceutical companies think it is a good thing — but it is a sign we are treating depression.
It is also important to remember that the treatment of depression should not involve just medications, but also psychotherapies and psychosocial treatments, which are often underused in seniors. Sigmund Freud said you could not be analyzed once you hit the age of 40 and that set back psychotherapy for the elderly for a long period of time. We know now there are many therapies that really work, including group therapy. The elderly do well with group therapy.
You also asked questions about the issue of prevention — what could we do in such a critically important area? There is the question of secondary prevention — that is, somebody develops a depression, we treat him or her, but can we prevent him or her from getting depressed again. We have good evidence that secondary prevention works. Some wonderful studies show if you combine antidepressants with psychotherapy, the rates of relapse are dramatically reduced.
Primary prevention is preventing depression from occurring in the first place, or trying to prevent Alzheimer's disease and dementia. We are in the early stages of knowledge in this area. We need more research. However, there are some exciting developments. For example, in what is called "mild cognitive impairment" — that is, people who have the early memory changes but they are still functioning perfectly well — there is a lot of interesting research on whether there are interventions to help those individuals, to prevent the development of more significant problems.
It is an exciting area. It is a critically important area. We need more research.
You also asked about the particular care settings, including the issue of home care, for those with chronic illnesses. That is a tremendously important issue. If you have been discharged from hospital after an operation, it is fairly easy to get some sort of home care. If you are suffering from chronic depression and having trouble managing at home, you are not a priority for most home care agencies. You are low on the list. The resources are not there. Therefore, we think that it would be money well spent to optimize funding for chronic home care to people aging at home and preventing institutionalization.
You mentioned the issue of long-term care facilities, nursing homes. There are at least 2,000 nursing homes across the country. They are struggling to provide care for individuals with mental illnesses. Behavioural problems, in particular, are a great problem. It was the whole issue of mental health problems in long-term care that got our coalition going in the first place; people from across the country came together and focus on this issue. We have a series of recommendations and much of the initial work of our coalition is focused on trying to improve mental health care in the long-term care facilities.
Finally, in respect of the role of nurse practitioners, I agree that senior nurses can play a critical role in community care and long-term care facilities. We are under-utilizing senior nurses in those roles.
Mr. Rudin: I will not address all the issues. I would like to point out that, as the Alzheimer Society of Canada, we do work with the coalition. I think it is important for you to be aware of that.
The issue of early diagnosis, this has been the thrust of much of our work — encouraging people to consult with physicians regarding their concerns about memory loss. Our belief is that the earlier intervention, the better off even though there is no cure.
That particular thrust is really very much a double-edged sword and we have done public opinion work. We find that people will say, "You guys do not know what causes this and how to fix it so why do we want to know?" We get a 50-50 split. We encourage people to go to the physician. They go to the physician, but they do not want to know the diagnosis. That is an issue. When people do present to a physician, I think the numbers have improved dramatically. Alzheimer's could only be diagnosed at autopsy — which militates against early intervention and so on. I believe that physicians are telling us that the acuity of the diagnosis is about 80 or 90 per cent through psychological testing as well as some of the imaging technology, which looks at the functioning in the brain and can see the disease occurring. The reason — without being cute or smart about it — is that the earlier people seek help, the earlier it is possible to put them on the few medications that are available.
In terms of the issue of prevention, there has been exciting work done out of the United States. There was a vaccine that was available for a limited time. It did get to phase 2 clinical trials where it was determined there was toxicity associated with the vaccine. Interestingly, when people who had been on the vaccine passed away, they could see that the vaccine had worked. Some of the conditions in the brain that were causing the Alzheimer's disease and the destruction of the cells were actually starting to reverse. That is very encouraging news in terms of stimulating more work in that particular area.
On the issue of home care, we, as a society, believe that long-term home care is significantly important and that the recommendations of Romonow report and your committee do not go far enough to be of assistance to the people about whom we are concerned. A well-structured, consistent program across the country is vital. We do not believe we can create enough facilities to look after the increasing numbers of people who will require service.
As I indicated in my remarks, half of the people who currently suffer from Alzheimer's disease and the related dementias are residing in the community. As those numbers grow, we cannot keep pace with creating facilities to be able to provide service. There is no question that a carefully conceived, comprehensive program of home care for people with these long-term requirements is necessary. I know the coalition, as well as other initiatives in government, are looking at how some of these things might be structured. Right now, we have an inconsistent fabric across the country, depending on the jurisdictions, where some are very well developed and others are almost nonexistent. We encourage that this be pursued aggressively.
I think it is dangerous to make the assumption — although we do — that keeping people out of facility can offset some of the costs of home care. The problem with that is we are not going to close any facility beds when we do that. It is really an incremental cost, but it is one that is probably well worth the investment.
Ms. Bruto: I would like to make a couple of comments about prevention. When people think about memory impairments and whether they should see their family physician, they may be concerned that they will get a diagnosis of early Alzheimer's disease. Some people do not see that as a positive thing. They want to delay that news. However, there are other reasons why people can have memory impairments and changes in mental status that are reversible. It is important to put the detection of these problems up front and centre, along with these other disorders of dementia and depression.
There is some evidence to suggest that best way to maintain your brain function is to treat hypertension — that that is the single most serious thing in terms of producing cognitive decline. Therefore, you might not want to get the news because you think it will be bad news, but there may be things that can be done. The early detection and prevention message is an important one to get out there to both clinicians and the population.
Ms. Gibson: It is important that, in the focus on prevention, we do not lose sight of health promotion. A lot of the things that can be done in the psychosocial, lifestyle and environmental domain potentially will decrease your chances of getting Alzheimer's or other chronic conditions are things like staying involved, being intellectually active, reading, developing long-term interests that keep you engaged in life post-retirement. These are tremendously beneficial for health and well-being of people in general. It is important that a number of these issues get focused in terms of health promotion. They will have beneficial spin-off effects in terms of illness prevention for some conditions.
The risk is that, if it is presented the other way, people become focused on doing all these things that would be for their own benefit anyway because they do not want to get Alzheimer's or other conditions. It is a negative spin. I think the health promotion piece is really important, and the prevention piece should be a component fit into that.
The other piece about long-term care is that many people will not survive without long-term care facilities. Their families will not survive without long-term care facilities — and they do not admit their loved ones into them without tremendous soul searching and trauma. You work with a 75-year-old spouse who finally has to admit her husband because she cannot manage him at home any more. This is not a happy day.
It is extremely important for the well-being of society — seniors and their families, in particular — that we are careful not to frame the long-term/home care discussion in the context of failure. A person has not failed if she or he needs long-term care; a family has not failed if it can no longer keep its loved ones at home. Failure is not what is happening with these people.
You certainly do not want to create a two-tiered system, where optimal care and optimal perceptions of how you are caring for the elderly members of your family are tied into keeping them at home and using home care services; and that long-term care is the "poor cousin" that most of us would try to avoid. That is not a realistic portrayal of how it is out there for people. It is important that any discussion of home care and long-term care is phrased in terms of the needs and the benefits each segment of the health care continuum can provide, and that it is not couched in those other stigmatizing languages.
The other important thing with long-term care in terms of developing health care services is that, unlike any other component of the health care continuum, long-term care is people's home. In our long-term care facilities, we not only provide health care; we provide people with a home. They live there. We are their neighbours. We are also their care providers; their peers become their family. There is an element about long-term care that is over and above what you experience in any other component of the health care system that needs to be accounted for in order to develop effective planning.
Senator Cook: Thank you for a very comprehensive presentation. I come from Newfoundland where the challenge of the delivery of health, no matter what form, we would say is a challenge and a half.
Mr. Rudin, you did say a moment ago that neither Romonow nor this committee went far enough. It is fair to say, from all committee members, that when we got into our study that was the realization. That is why we are here this afternoon — we have several studies and we realize we did not go far enough.
With respect to Dr. Conn, who talked about the fragmentation of service and support in relation to a national action plan. I would prefer the word "standard" to support that, rather than guidelines. I am interested in hearing from you as to what role telehealth would play, given the fact that has been part of the primary care delivery in my province for a long time because of the geography and other complexities.
I would also like you to comment on the basic care. I did not hear the word "nutrition" from either of you, and I am interested in that challenge when you are dealing with the elderly, specifically those who are still living at home. I am also interested in medication; if your memory is poor, what factors can come into play to mitigate that?
Lastly, I see a great role here for public health that can certainly provide the optimum care that our people deserve and that we should, as a government, be giving them. How would you comment on that?
Dr. Conn: Thank you for those important questions. The first question is about telehealth, which an area of interest of mine. I think it has tremendous potential. Certain provinces like Newfoundland have been international leaders in the development of telehealth. Many other Canadian provinces have also played a major role. My own province, Ontario, has been a little bit slower to realize the wonders and benefits of telemedicine, but we are finally getting on board now.
I actually spend every Wednesday afternoon doing consultations to the far northwest of Ontario. It is so far away from Toronto that they are in a different time zone. I have been doing that over the last year and I find it remarkably rewarding. I think that the health care professionals at the distant sites, and the clients and their families seem to appreciate it. It works very well in mental health because most of what we do is talk to people. The assessment generally involves communication interaction. With the new technologies, it is very good.
Some people would say that seniors would not adapt to that or be able to cope with something like that. Everyone is used to the television by now and it is just like talking to the television. It also works well from an educational standpoint. Some of the sessions in which I am involved involve direct patient assessments, but many involve indirect consultations with staff, or educational sessions.
The potential for reaching out to rural and underserviced areas is very great. I know that the federal government has been instrumental in the development of telehealth through Canada Health Infostructure Partnerships Program, CHIPP grants. Continued investment in telehealth in the geriatric field could be beneficial.
Nutrition is a fascinating area. There is no question that, to some degree, we are what we eat. Poor nutrition can be very common in the elderly. It can occur with virtually any mental health problem. Depression is a good example as are dementia and Alzheimer's disease. When people are emotionally unwell, they are not able to look after themselves and ensure that they eat properly. Of course, when you are depressed you lose your appetite. It is a critically important area.
You can become deficient in vitamins. We know that certain vitamin deficiencies such as vitamin B12 deficiency can actually cause an Alzheimer's-like picture. One of the things we have to do when investigating for the possible reversible dementias is a blood test for vitamin B12 and folate. Nutrition is a key issue. As physicians, we often do not pay enough attention to nutrition. That is something that must be emphasized. It is a critical part of looking after an individual.
You also mentioned the important issue of compliance — we use the term "adherence" now — with prescribed medications. For individuals who have memory disturbance it is a great challenge, obviously, to remember when you took which of the 10 different medications you are supposed to take. There are now devices that help people organize themselves such as dosette boxes that can be very helpful. However, they are only part of the answer. Sometimes families help out a great deal in helping individuals to remember. Some individuals are stubborn and will tell you they know exactly when to take their medications, but they do not. That is a great challenge. Home care services can help a lot with a nurse going in to help individuals organize themselves.
I certainly agree that the potential role for public health is very important. Any community-based services that can provide case managers, for example, to the elderly living in their homes, can make a huge difference.
I appreciate your questions.
Senator Roche: I thank all the witnesses for their excellent testimony.
Dr. Conn, would you tell us a bit about the Canadian Coalition for Seniors' Mental Health? I see a very distinguished group of professionals on your board and steering committee and I see your objectives. When did it start and how do you operate?
Dr. Conn: It is a relatively new organization. We were born in April 2002. We had a national conference in Toronto on gaps in mental health services for seniors with a focus on long-term care facilities. We had excellent participation from about 90 organizations from across the country. It was a very exciting meeting. We used an interesting concept called "open space," which allows complete interaction for two days. Everyone at the meeting can create an issue and then create a room for discussion of that issue. It involved maximum participation of individuals from across the spectrum — consumers, professional associations and so forth. By the end of the meeting, it was clear that we needed to have a national coalition to work on these issues and there was unanimous agreement to move ahead with that.
We were fortunate to have support from Health Canada in the development of this conference and subsequently in the creation of the coalition.
Senator Roche: Financial help?
Dr. Conn: Ultimately we applied to the Population Health Fund for a grant and were successful in obtaining it.
Senator Roche: Do you have an office?
Dr. Conn: No, not really.
Senator Roche: Do you have an executive director?
Dr. Conn: We have a program director. Shelly Haber is a wonderful person who has helped to move things forward.
It was the Canadian Academy of Geriatric Psychiatry that moved things forward initially. We funded this health care consultant, who is a wonderful person. It was the initial funding from our academy that got things rolling.
Senator Roche: The Canadian Coalition for Seniors' Mental Health started, as you said, in 2002. Is this recognition of the growing level of knowledge and concern by professionals on seniors' mental health issues?
Dr. Conn: Yes, without a doubt. We are most fortunate to have on our steering committee representatives from 12 national organizations. We are also fortunate that we were able to obtain some funding from industry for our work.
Senator Roche: In the structural sense, would you be capable of implementing any kind of education programs if we were to recommend more such programs?
Dr. Conn: I think we would. We have representation from all the important associations and organizations. We could achieve a lot, with some support.
Senator Roche: Mr. Rudin, would you tell me the difference between dementia and Alzheimer's? Am I wrong to think that dementia is much more common in the mental illness field than is Alzheimer's? Does one lead to the other?
Mr. Rudin: No. Alzheimer's disease is one of the dementias, but there are a number of others. There is vascular dementia, Pick's disease, frontal-lobe dementia, et cetera. Alzheimer's disease is the most frequently occurring. Of the number I gave of 360,000 Canadians, approximately three-quarters are suffering from Alzheimer's disease, but that is only one of the dementias. Dementia is the general category and Alzheimer's disease is a specific diagnosis within the category.
Senator Roche: Is the incidence of Alzheimer's disease and dementia increasing?
Mr. Rudin: Yes, sir.
Senator Roche: There must be a natural increase because the number of seniors is increasing, but is the incidence of the illness itself increasing?
Mr. Rudin: Both the incidence and the prevalence are increasing. The numbers of people getting the disease and the demographics that are driving the disease are compounding the problem.
Senator Roche: Leaving the demographics aside, with regard to the incidence and prevalence of the disease itself, what are the main factors in society that are producing this in seniors?
Mr. Rudin: I wish I could give you an answer, senator, as to exactly what they are. It is a very complicated disease. There are certainly genetic factors. There may well be environmental factors that cause the disease. However, much of the research work being done right now is trying to answer to those questions so that we can either avoid or prevent the illness.
Senator Roche: With regard to the gender question, it is correct that the incidence of these illnesses in females is higher than in males? Yet, Ms. Gibson — who I will come to in a moment — said that you find much more self- destructive behaviour among males than females. Can you say, as a general statement, that men take less care of themselves than women because of the kind of behaviour men get into? How do you relate the fact that the incidence is higher among women but men take less care of themselves?
Mr. Rudin: I can only answer the numerical part that says that there are more women than men and women, on average, live longer than men. In terms of the destructive behaviour and the related science, I will leave it to my learned colleagues to deal with because I do not know.
Ms. Gibson: We do not actually know yet to what extent "taking care of oneself" will prevent Alzheimer's. We do not think self-destructive behaviour prevents Alzheimer's; we are not going that route. We do not know the extent to which the more self-care, healthy behaviours are preventative. The self-destructive behaviours tie into the higher suicide rates for men and older men. In response to emotional turmoil or crisis, you will see higher rates of depression among women and higher rates of suicide among men.
Dr. Conn: Regarding suicide, which is an interesting statistic, it seems as though men, when they get very depressed, often do not seek out help. They do not talk to anyone. They find it harder to admit that they have a psychological problem. Moreover, when men become suicidal, they tend to choose more lethal approaches to a suicide attempt. Thus, they are more likely to choose hanging or a weapon of some kind, whereas women are more likely to take an overdose — perhaps a small overdose.
Senator Roche: Would you agree, doctor and other members of the panel, that we might be able to perform a service here in our report by putting a spotlight on the growing incidence of mental illness in senior citizens? This is an interesting example that Ms. Gibson gave about the "sandwich" generation — she said there are 65 to 70-year-olds caring for their parents. This is a new phenomenon facing society. Perhaps we have not thought enough about it. I will leave it there. I hope that we will be able to think about it a bit in our report.
Ms. Gibson: Once you do realize that that is what is happening, it becomes interesting. In long-term care, you cannot take the question: "Do you have a living parent?" off of the admission forms because it is quite possible to have people admitted to your long-term care facility who have parents in a long-term care facility.
Senator Cook: Given the governance of this country, how would you see the delivery of a national action plan, given that health is delivered by the provinces and conceivably a national program could come from the federal system? It will be important to us.
Dr. Conn: The challenge of having a national action plan for mental health and mental illness is that the delivery of health care, as you say, is a provincial and territorial exercise. The federal government can play a critical role in establishing national standards and guidelines to which, we would hope, the provinces would adhere. To make it a successful enterprise, the provinces and territories would have to be involved in the process.
Many of my colleagues in other national organizations, such as the Canadian Psychiatric Association, and the Canadian Association of Mental Illness and Mental Health are very supportive of the idea of a national action plan. Our coalition would certainly support that. We are aware of the fact that there are logistical difficulties. I do not have the answer to that question, senator. We need experts who have an understanding of the Canadian political process who could help us to navigate those waters.
Senator Cook: It would have to happen would be through a first ministers' health conference or something like that. For it to be truly national and delivered, everyone will have to sign off on it. I see that as a challenge.
Senator Léger: Ms. Gibson, you said that 80 to 85 per cent of seniors are well. Are there enough research and studies being done on wellness? Is 80 to 85 per cent of the funding for research done on seniors who are well? Perhaps they have some suggestions about what to do. I am not talking about brain disorders — that is another field.
When we say "mental health" and you talk about depression, et cetera, are there enough studies being done on wellness? Why are they well? Can they continue in the same vein?
Dr. Conn, if I understood well, 80 per cent of those affected in mental health are in institutions. My conclusion, therefore, is that the problem is the institution.
The last question is in the field of Ms. Bruto. With regard to cultural and linguistic differences, that is crucial. Is enough research and importance being put there?
Ms. Gibson: There is increasing recognition of the importance of studying successful and healthy aging. One significant effort in that regard is the Canadian Longitudinal Study on Aging being launched by the Institute of Aging of the Canadian Institutes of Health Research. This study is under design as we speak and will be targeted at following cohorts of older people, aging people over the next 20 years to start to get answers to those questions. That is a hugely significant step and commitment to the point of view that the demographics are such that we now are going to age; therefore, we better get a handle around what aging well means.
There is a bit of a split between a focus on healthy and "successful aging" and a focus on illness that has been somewhat problematic because there is an assumption that people who have Alzheimer's, for example, are automatically excluded from the ranks of "healthy" agers.
Therefore, we will have to look at the issue of what is healthy and successful aging with chronic illness for the segment of the population who have chronic illness that we do not yet know how to prevent or cure: people who have Alzheimer's; who require long-term care services for reasons such as chronic pain conditions; and who have developmental disabilities such as Down Syndrome and are now aging. We do not want to set up the standard that successful aging consists of being as much like a 45-year-old as possible. The standard has to consist of something in and of itself as a developmental stage that people are moving into. We have to broaden our understanding of what successful aging is so that we allow those segments of the population who do not have everything going for them as they move into their older years to also experience the best possible quality of life.
There is a good body and push of research to develop the prevention and treatment of illnesses such as Alzheimer's that affect the elderly. That research extends to understanding healthy aging. There is a need for research and conceptualization to bridges the gap between those two so that we don't have a group of aging seniors who fall between the cracks — services for the healthy aging and health promotion services for the people who have obvious disabilities.
Senator Léger: I thought that if one qualified as a "healthy ager," then one does not need much help.
Ms. Gibson: You do not; it is wonderful. However, we do not want to say that these people who are doing wonderfully are the gold standard and these people who are not doing well will receive all of our efforts for treatment. We must understand what it means to age successfully and the optimal quality of life possible for those who are developing cognitive impairments or chronic illnesses or those who fit somewhere between the two groups. For example, they do not fit in a certain "group" because they do not golf, however they are also not completely impaired. What about that group? I would say that they are the neglected segment of the population right now in terms of research interest.
Senator Léger: I was thinking of common sense. In the old days, there was the patriarch and the matriarch. Today, it is all about society. It is a social issue and that is crucial.
Ms. Gibson: Another significant component of this situation is that this is the first time in society that significant numbers of people have reached older ages. We have actually never experienced this before. It is one thing to have a patriarch/matriarch when few reach that age; it something else when so many get there to find out how society will balance that. We do not know yet.
Dr. Conn: With regard to the question about 80 per cent, my point was that there is a particularly high prevalence of mental illness in long-term care facilities — up to 80 per cent. In the community, there is also a great deal of mental illness but the rates would be much lower — probably in the range of 20 per cent. For many mental illnesses, the prevalence is similar in younger people. Rates of depression, for example, among seniors living in the community are roughly the same as with younger people. If you go into the long-term care facility, the incidence of depression is very high. That was my point. Certainly, in the community, there is a great deal of mental illness and dementia, as Mr. Rudin mentioned. The whole problem is not in the institutions but there is a big problem in the institutions.
Senator Léger: May I have your comments on cultural and linguistic differences?
Ms. Bruto: The cultural and linguistic barrier is a huge problem for detection of difficulties that relate to depression, anxiety and cognitive problems. The problem rests in terms of understanding the context and the cultural issues. It is not as simple as finding out about how these things express themselves in the country of origin. The reason for that is often, when these individuals come to Canada and become Canadians, they are no longer like they were in their country of origin. They are also not like the others within the mosaic. They are in a unique place in that they have one foot in two cultures. That presents important challenges in trying to diagnose some of these mental health issues. That speaks to only the cultural issues.
The problems are further compounded by the linguistic barrier that can exist between the clinician and the individual who is seeking clinical service. Trying to assess whether someone is within normal limits for memory, mood, affective tone and level of agitation when you do not understand the normative base, is extremely difficult. It is more difficult when you cannot obtain the information directly from the patient and you have to rely on the translators and interpreters. The use of interpreters is one area where there is a literature, and the rest is based on clinical experience. The literature suggests that if you are to use a translator or interpreter, your chances of being wrong go up significantly. That is a huge problem.
Senator Léger: I hope that it is being discussed because we are experiencing more and more immigrants each year.
Ms. Bruto: The best we can do now is to try to utilize clinicians who speak that language. It is a very poor second best.
Senator Fairbairn: I have a couple of observations. I was taken with the notion that perhaps now is the first time that the elders in our family are actually reaching the age of seniority when a great many of these illnesses occur. In the days of pioneer folks — who would have passed away much earlier in life — we were not accustomed to such illnesses.
In your document, Dr. Conn, you speak to ageism and that people mistakenly believe that these health problems are normal in older people and that there nothing can be done about it. Then you speak to the stigma. We have heard much about that word throughout these meetings: stigma. The stigma may relate to the individual who knows something is going wrong, but not wanting to speak up; stigma on the part of the family who feel shame; or stigma within the care system where people's preference is to not deal with long-term care facilities or others that deal with this.
I have been steeped in communications throughout my life. It seems that we have so many opportunities available to us to cut through some of this. All of us around this room have had personal experiences that touch us in these hearings.
We must help people to understand the reality of individuals getting these different cognitive diseases — at varying ages, perhaps. That is critical to advancing. How do we do that? What effect would it have on the people who are being treated?
I will use my experience as an example. My mother was one of those matriarchs who did last to have these things. She passed away when she was just pushing 93. She was a daughter of a pioneer. In her latter years, she had many disappointing events, and they were all given different names: Hardening of the arteries; maybe dementia; Alzheimer's — not particularly because that was the time when you had to find that out with autopsy.
In retrospect, I did not understand well enough what was happening. If I had understood better, I would have been able to help her, help other people in my family and even help myself respond a little better and find ways to help and find assistance. That is the same kind of questioning that I am sure goes on many people's minds and hearts when they are trying to deal with this in their home or in a long-term care facility.
With all the advantages in communications that we have, what can the coalition do to get the story out? How can you let people know that there are certain ways of making things better? However, should those fail, there are a lot of better ways of coping to the advantage, particularly for the person who is finding his or her life becoming more disjointed. I am wondering if all of you might have a thought on that.
Mr. Rudin: The issue of stigma was the focus of our last awareness campaign because, as I indicated — and as you have articulated — this is a huge problem.
We emphasized education in the awareness piece that we have done over the years. The education focused on the frequency of the disease and the message that there are avenues through which people can find help. We were promoting the services of organizations like the coalition — the availability of self-help groups, support groups and physicians that have particular areas of expertise.
There is also a broad range of information. People can look things up on the Web site or in the information that we publish. We have information on areas that perhaps people want to know about but are afraid to ask. They can access this information with a certain degree of privacy and anonymity. Our focus was awareness, the provision of information, and also the provision of information about where help was available.
There is also the fact that tremendous numbers of people are struggling with these issues and that we understand the issues are surrounding their fears. We are trying to allay them through those means that I mentioned. It is a very difficult question. Having said all those kinds of things, I do not believe for one moment that people say, "Oh, that takes care of the stigma; I feel fine about it right now."
If we had a cure on the horizon, I think the stigma —at least in the Alzheimer's and dementia community — would be easier than that for some of the other issues that you have heard about. It really is through awareness, education and the availability of resources.
Senator Fairbairn: How strong are your troops in the field? Appreciating everything you are saying about your campaign and using electronic communication to get your message out, how many people do you have on the ground who are in a position to get out and talk to various groups directly on the kinds of things that you have been able to talk to us about today?
Mr. Rudin: There is our office, which is the federal organization. Then there are provincial societies and within the provinces, there are 140 chapters and support groups in the various municipalities across the country — some as large as Toronto, Montreal, Vancouver and some that are in very small communities where they meet in church basements or in caregivers' homes. That is what we are doing as a society.
The coalition is also doing a lot of work. We have approximately 200 employees in aggregate across the country, but we have thousands and thousands of volunteers who members of speakers' groups and people who have been intimately involved — as you have been — with the disease and who are willing to speak about it.
I mentioned two people with the disease in my brief. These are part of a new group of folks who have the disease and willing to speak about it, share their experience and talk about what is going on with them. We never had that before. Early onset groups are springing up across the country. We are having a meeting in Ontario in August, bringing those folks together. We will be bringing representatives onto our boards of directors who have Alzheimer's disease. It is a new beginning in terms of the awareness of this and the resources that are available to provide that information. The word will get around quickly when we find a cure, but now it is really what resources are available and how we can help that is most important.
Senator Fairbairn: I cannot let that moment pass without mentioning the name of one of our former colleagues, Maurice Dionne. He was one of the early outreach people; even while he was still finishing off his term, went out and started speaking on what was happening within his life. He continued to do so. It was powerful communication.
Mr. Rudin: When I joined the Alzheimer Society, my first meeting was with Maurice Dionne, and his wife Precille. He had just indicated to the Prime Minister that he would not seek re-election because he was suffering from Alzheimer's disease. He hosted our first breakfast on Parliament Hill to try to call attention to the disease and how it can really happen to anyone.
Senator Fairbairn: I was there.
Mr. Rudin: We were grateful to him. He was absolutely the first person to come forward in that way, to say, "I have got the disease." I remember his comment when somebody asked him what it is like. He said it was having holes in his memory. That sort of stuck with many of us.
Senator Fairbairn: He also said that he was perpetually meeting "whole lots of new friends every day."
Senator Keon: You have a tremendous task ahead of you, and the solutions pale in comparison to the problems. As we have listened to the witnesses, it is interesting that the fundamental ability to make a significant impact seems to rely on organization. The term "action plan" has come up repeatedly regarding mental illness. Certainly, the organization of personnel and facilities is a must, although over-organization is sometimes worse than no organization.
I am also impressed that even though you have various societies, these diseases have not been targeted in a big way. If we look at the real progress that has been made historically in health, medicine and medical science, it has been when diseases reach epidemic proportions. They then get targeted and a real effect ensues. We have many good examples of that such as polio, tuberculosis and, more recently, heart disease and, to a lesser degree, cancer.
I would like to hear from you as a panel how you think you could target. I appreciate the stigma problem here too. You do not want to build an institute for Alzheimer's and have people driving up to it. Perhaps you do.
How would you organize your research and educational program as well as your prevention, diagnostic, therapeutic and development programs for some of these huge entities? Take Alzheimer's as an example. Is it done best within the framework that you have now? For example, you have improved primary care and some of the other things. Is it best to start over and really come at it without the focused approach?
Dr. Conn: Thank you. I appreciate what you are saying about how a disease has to reach epidemic proportions before there is serious action. These diseases that affect seniors' mental health have been called a "silent epidemic." There is an epidemic, but it does not have that dramatic presentation in the way that polio might have had.
The problem exists and it is serious. We do not have to remake the entire system. We have many of the right elements in place. We need the full range of services all the way from prevention to end of life care.
Many of the components are in place. We need a more coordinated, integrated approach. We tend to work in individual silos and often are poorly connected — especially in larger cities, for example. Those cities that may actually have good resources are often difficult to navigate for the consumer. It is difficult for care providers to work together because there is not enough of a coordinated approach.
There is no question that some people are against too much administration. Sometimes in Canada, we do not have enough of a coordinating approach. Certainly in big cities such as Toronto there are plenty of resources but there is not really enough of a mastermind organizing the system.
When it comes to getting more money for education and for research, we can only make our case and hope that the funding bodies will realize these are serious issues and that we need a start in order to make a difference.
We do have effective treatments, but it is getting the treatments out there and making them available. We have wonderful treatments for depression. We have treatments for psychotic illnesses. Suddenly, we have treatments for dementia illnesses such as Alzheimer's.
It is a very exciting time to be involved in geriatric mental health. It is a question of making the resources available and having enough resources to stretch across this vast country.
Ms. Gibson: In addition, I do not think that we will successfully address the issue unless we do take on the issue of ageism. It underlies our willingness to expend resources. If you do not think much can be gained, if you think it is a natural part of aging for people to have these problems and you do not think there is that much time left to them anyway, you will not choose to put your resources in that direction. At some level, ageism will have to be addressed head on.
We will also have to figure out and articulate the benefits to society of managing these problems better. We need to explain the economic benefits, benefits that accrue to the health care system and families and how it helps society to have a larger segment of its aging population healthy, well and productive into their later years.
Those of us who work in the area must make a better case for why focusing on this silent epidemic and getting it under control will pay off for everyone in the long run. That means both explaining those benefits in a convincing way and articulating the prejudices against older people. We do not want to think about the bad things that happen with aging because we are all hoping that we will be in the group that ages well.
The decision-makers and policy-makers who go into careers in these areas have to get past some of these prejudices before we will be able to move forward. The ageism must be addressed with younger groups who are the potential future health care providers and policy-makers who can help in this area. We have to come up with the answers, clearly, concretely and practically about the benefits of doing a better job.
Ms. Bruto: I read a study many years ago that talked about the positive delusional set that people have about his or her own aging. We all think that we will grow old and be perfectly healthy until the moment of our death. We believe that we will have much satisfaction and then we will just die.
The part about chronic illness is not in the picture for many people when they think about their ageing and the aging of their family. When that mindset is juxtaposed with some of the things that can occur with aging — Alzheimer's disease, cognitive impairment, depression, disability, loss —a hopelessness takes over that sometimes is difficult to combat, not just in the individual seeking — or not seeking — service but also in their family and in the clinicians. That can be a barrier to getting people to seek attention and to accept attention.
We may not be able to win the war. That is eventually, we will all die. If we have Alzheimer's disease, we will eventually dement. There are ways of winning the battles, and winning those battles means reductions of symptoms and managing some of the behaviours that can impede quality of life.
There are things we can do to improve the situation and improve quality of life. We have to emphasize how we win the war by improving quality of life, not necessarily by fixing it. The acute model of care may not make much sense, given that most of us develop chronic illnesses.
We must develop a different mindset. We must do that with policy-makers, hospital administrators and at the grassroots level. Every time that we work with a patient, our goals must make sense within the context of improving quality of life, not merely fixing it. We can fix some things and by all means, we should. However, for some things, we need to adapt and look at different ways of improving quality of life.
In stroke populations, two patients can have the same lesion — at least they look the same on the neuro-imaging. They may have similar neuro-psychological profiles. However, the adjustment, adaptation and quality of life each of those two individuals has may be markedly different. We need to understand better the factors that put us in one group versus another.
This will require our coordinated attention. We know, from other populations such as heart disease or stroke, that different approaches from different levels of people involved in the process works. These are coordinated into stroke units as opposed to providing stroke care throughout the hospital. These coordinated approaches that emphasize education and evidence-based practice, do make a difference.
The Acting Chairman: Thank you to all of our witnesses. You helped the committee to gain more knowledge as we continue our study of mental health and mental illness.
The committee continued in camera.