Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue No. 3 - Evidence - March 24, 2016
OTTAWA, Thursday, March 24, 2016
The Standing Senate Committee on Social Affairs, Science and Technology met this day at 10:30 a.m. to study the issue of dementia in our society.
Senator Kelvin Kenneth Ogilvie (Chair) in the chair.
[English]
The Chair: Honourable senators, good morning.
[Translation]
Welcome to the Senate Standing Committee on Social Affairs, Science and Technology.
[English]
I am Kelvin Ogilvie from Nova Scotia, chair of the committee. I will ask my colleagues to introduce themselves.
Senator Raine: Nancy Greene Raine, British Columbia.
Senator Seidman: Judith Seidman, Montreal, Quebec.
Senator Stewart Olsen: Carolyn Stewart Olsen, New Brunswick.
Senator Munson: Jim Munson, Ottawa.
Senator Merchant: Pana Merchant, Saskatchewan.
Senator Eggleton: Art Eggleton, Toronto, and deputy chair of the committee.
The Chair: Thank you, colleagues. I remind you that we are continuing our study on the issue of dementia in our society.
We have very important witnesses before us today. I want to make certain that all senators have a chance to get their questions in, so I will be a little more restrictive than yesterday with regard to the total amount of time. We will do more than one round, if that's agreeable with the committee.
I will start with Carolyn Pullen, Director, Policy, Advocacy and Strategy, Canadian Nurses Association.
Carolyn Pullen, Director, Policy, Advocacy and Strategy, Canadian Nurses Association: Thank you. I am a registered nurse. I am very honoured to represent the Canadian Nurses Association today. We are the national professional association for 139,000 registered nurses.
Nurses are the predominant frontline health care providers serving Canadians. In both our professional and personal lives, we see first-hand the impact of dementia on patients, caregivers and health services. Today I will highlight four recommendations from our brief which would suggest a role for the federal government as both a funder and fifth largest provider of health services in Canada.
First, CNA recommends that the standing committee call for a national commission for integrated health care for Canadians. As called for repeatedly, an essential step for improving health outcomes for Canadians is better integration of health services. This applies equally whether the focus is dementia, heart failure, palliative care, mental illness or any other health condition.
Currently and for the most part, health services in Canada are organized around providers and siloed funding envelopes as opposed to around patients and programs of care. They are delivered in a series of disconnected parts. The result is lack of coordination, variable patient satisfaction, under-used health care professionals, a focus on illness and slow diffusion of innovation.
Better integration can improve access to care, coordination with social services and the social determinants of health, coordination along the continuum of care, optimal use of professional skills, multidisciplinary teams, technology and health information, and could reduce hospital admissions.
A national commission could establish guiding principles for integrated health services to achieve better care, better health and better value, and could ensure that principles are espoused in the upcoming health accord and upheld as health system changes are implemented.
The CNA could support this work by contributing nursing expertise on proven approaches to health protection and promotion, multidisciplinary teamwork, continuity of care, and system navigation.
Second, Canada requires a national strategy for dementia care which promotes a shift from hospital-based to community-based care. The CNA strongly supports the Alzheimer Society's call for a national strategy. The burden of dementia is large, and no single jurisdiction or organization can address it alone.
In tandem, the CNA has heard clearly that Canadians want to age safely at home. Home and community-based care is a preferred model. Research and practice show access to community-based care can reduce upstream risk factors and support early detection of dementia, both of which slow the trajectory of the disease and improve quality of life.
Community-based care can relieve pressure on institutional services, which is important as it is projected that by 2038 there will be a shortfall of 157,000 long-term care beds across Canada.
In support, the CNA recommends that the federal government provides leadership and collaborates with provinces and territories to reduce modifiable risk factors for dementia, delay onset and enable diagnosis, and that the government support the scaling up of promising models and technologies for community-based care.
The CNA has a vast inventory of successful models and can apply our resources to diffuse innovation. Further, the government could invest in community infrastructure to keep seniors active, safe and healthy at home, and provide a needs-based top-up for provinces and territories based on demographics and regional health priorities.
Third, Canada needs to scale up dementia-friendly care. Many individuals with dementia are hospitalized for reasons unrelated to dementia, but their disease increases the risk of complications. This reality highlights the need for evidence-informed approaches to assessment, intervention and social services and physical settings that are tailored to the needs of dementia patients. It is well-documented that when health care providers have the knowledge, skills and tools to deliver dementia-friendly care, there is more appropriate use of medications, fewer falls, reduced lengths of stay, and reduced premature admissions to long-term care.
The CNA recommends that the federal government address dementia-friendly care within a national dementia strategy and support the scale-up of innovative dementia-friendly care models. Examples of these exist in Canada and around the world in diverse settings including towns and cities, institutional care settings, and unconventional environments such as residential villages for people with dementia.
Finally, Canada needs increased financial support and education for caregivers. Over 6 million employed Canadians are unpaid caregivers for someone with an illness or disability. They are an essential part of dementia care in the community, yet they have little formal support, high rates of burnout and often experience financial hardship. Lost wages for caregivers are projected to rise to $55 billion by 2038. Research has shown that financial and educational support improves patient outcomes and quality of life and decreases costs.
To this end, the CNA recommends that the federal government assist the provinces and territories in developing and disseminating best practices to support informal caregivers; convene a consultation with employer stakeholders to develop federal tax measures that protect workers' incomes, and provide supports for workplace leave and respite care; and fund a resource portal for caregivers, care providers and the public to promote knowledge translation on best practices in the prevention and care of Canadians with dementia.
By adopting these recommendations, the standing committee can contribute to better health, better care and better value for all Canadians, including those affected by dementia.
Thank you.
The Chair: Thank you very much.
I'll now turn to Dr. Chris Simpson, Past President of the Canadian Medical Association. With him is Dr. Frank Molnar, Vice-President of the Canadian Geriatrics Society. Dr. Simpson will be making the presentation.
Dr. Chris Simpson, Past President, Canadian Medical Association: I'm glad to be one of at least three native New Brunswickers around the table.
Thank you for the invitation to appear today on this very urgent issue. You have introduced Dr. Frank Molnar who has a role with the Canadian Geriatric Society but also serves as the medical director of the regional geriatric program of eastern Ontario. He is a well-regarded expert in care of the aging. I will ask Dr. Molnar to participate in some of the answers to your question along the way. We have had really interesting discussions over the years on this and other issues. It stems from when we trained together in Kingston, spending lots of 36-hour shifts in crowded emergency departments. It builds a special kinship.
The CMA has believed for as long as anyone can remember that the federal government must take a leadership role in addressing the care of Canada's aging population and those suffering from dementia, just as Ottawa took the leading role in the creation of a national healthcare system 50 years ago.
As context, in 2015, for the first time in Canada's history, those over the age of 65 outnumbered those under the age of 15. Seniors are projected to represent more than 20 per cent of the population by 2024 and up to a quarter of the population by 2036.
Today, while seniors the account for about one-sixth of the population, they consume approximately half of all public health spending, and it is forecast that they will consume 62 per cent of the federal and provincial health budgets by 2036, just 20 years from now. Health budgets are now averaging 38 per cent of provincial and territorial budgets, although it can be as high as 45 or 46 per cent, as it is in Nova Scotia.
Alarmingly, the latest fiscal sustainability report of the Parliamentary Budget Officer explains that the demands of Canada's aging population will result in steadily deteriorating finances for the provinces and territories, which, under the current policy, will not be able to meet the challenges of the population that is aging.
As a native New Brunswicker, these stats resonate particularly hard. New Brunswick has one the oldest populations in the country. I spent a lot of time there in my capacity of CMA president last year, and I can tell you that care of the aging is a crisis. It is a top political issue, and I think New Brunswick is a harbinger for what is in store of other provinces unless we address care of the aging immediately.
While about 15 per cent of all acute care beds across Canada are occupied by the so-called "alternate level of care" patients, that number is 25 per cent in New Brunswick. A study by Pamela Jarrett, a geriatrician there, found that of those ALC patients waiting to go to a long-term care facility, fully 10 per cent have waited more than two years to get into a nursing home.
It will be particularly difficult to meet the needs of the growing patient population with Alzheimer's disease and other forms of dementia. By 2040, the number of Canadians with Alzheimer's disease and other forms of dementia is expected to more than double to 1.4 million, or 3 per cent of the population.
According to the Canadian Institute for Health Information, one in five seniors receive publicly funded home care, and three in five seniors in a residential care facility had a diagnosis of Alzheimer's disease or some other form of dementia. It is estimated that the costs associated with dementia total $33 billion per year and will increase to the staggering figure of $293 billion annually if current inefficiencies remain.
We are working toward better treatments for dementia. The more optimistic talk about a cure. The reality is that we'll likely see incremental improvements in preventing dementia. But until that point, dementia will be a chronic disease that has to be managed with considerable skill, planning and innovation. It is also a health priority that has to be managed in conjunction with all the other issues connected with care of those who are getting older.
Frank and I were talking over breakfast this morning about the fact that there is no such thing as a patient with dementia; they are patients with dementia who also have heart disease, diabetes and other chronic diseases. That increases the complexity of the issue.
The dearth of quality long-term care in many places in this country causes difficulty for all the patients who need it, whether they're diagnosed with dementia or not. As Dr. Molnar can tell you, dementia is the godfather of chronic diseases in that it will lead to an ongoing litany of many other diseases.
The CMA is making recommendations for federal action to ensure Canada is prepared for its aging population. We are anticipating a rise in the number of Canadians with Alzheimer's disease and other forms of dementia, and we need to be ready to support them.
Our recommendations are designed to be implemented straight away, even in this fiscal year, in order to deliver immediate support to the provinces and territories and directly to Canadians. We believe that immediate implementation of the recommendations is essential, given the current and increasing shortages being experienced across the continuum of care in all jurisdictions.
We hope our recommendations contribute to the development of a new health accord.
Now, as you may have read — and I know you all know — hospitals have this "alternate level of care" classification. I've always found that to be a euphemism for the thousands of seniors who require chronic care but who are, frankly, being warehoused in acute care settings. It is heartbreaking to see this every day, because not only are they not getting the care they deserve, sometimes for years on end, but it is one of the most inefficient ways I can imagine to spend our limited healthcare dollars.
We have to do better in providing acceptable home care and long-term care to older Canadians. We need to de- hospitalize the system to free up the hospitals to do what they are supposed to do, which is to look after people with acute illness and so on.
Despite its importance, it's widely recognized that there are shortages across the home care sector. While there are innovations occurring in the sector, financing is a key barrier to scaling up and expanding these services. We have all heard the old saying about Canada being the country of pilot projects: lots of pockets of excellence everywhere, but we can't seem to get our act together to scale those up.
To deliver on Ottawa's $3 billion commitment to increase the availability of home care, we are urging the establishment of a new, targeted home care innovation fund.
In 2012, wait times for access to a long-term care facility ranged from an average of 27 to more than 230 days, and I alluded earlier to some places where it is measure in years rather than days. We estimate that the shortages in the long- term care sector represent an inefficiency cost to the healthcare system of $2.3 billion annually.
Long-term-care infrastructure has been previously excluded from federal investment in infrastructure, and I'm speaking specifically about the Building Canada plan. We believe that Ottawa needs to include capital investment in continuing care infrastructure, including retrofit and renovation, as part of its commitment to invest in social infrastructure. We recommend that $540 million be allocated, if implemented on a cost-share basis.
Let me finish with a final plea — and we heard this from the previous speaker — for the 8.1 million Canadians who serve as unpaid caregivers in this country. I have often called them the unsung heroes of the healthcare system. They play a critical role in caring for seniors. We would urge Ottawa to begin to recognize their role by amending the existing caregiver and family caregiver tax credits to make them fully refundable. That would greatly increase financial support to caregivers and would cost the federal treasury about $90 million.
Honourable senators, thank you for taking on these issues. You certainly have your work cut out for you.
The Chair: Thank you.
I will now turn to Dr. Francine Lemire.
Dr. Francine Lemire, Executive Director and Chief Executive Officer, College of Family Physicians of Canada: Thank you, honourable senators. In keeping with a Maritime theme, I am a Quebecer, but I am a Newfoundlander by choice, as I practised in Corner Brook, Newfoundland, for almost a quarter of a century. I have a father who died from Alzheimer's disease, so the topic is close to my heart.
I will make my remarks in English, but I will be pleased to answer questions in French.
The college represents 35,000 members across Canada. We are the professional organization responsible for establishing standards for the training and certification of family physicians. We accredit postgraduate training in family medicine in each of Canada's 17 medical schools. We review and accredit continuing professional development to enable family physicians to meet certification and licensing requirements, and meet their commitment to lifelong learning to best serve their patients. We provide quality services, support family medicine teaching and research, and advocate on behalf of family physicians, family practice and the discipline of family medicine.
I will address the role family physicians have in supporting and assisting patients diagnosed with dementia. It is a complex and evolving disease that is challenging both healthcare professionals and family caregivers. The average family physician has 30 to 40 dementia patients in his or her practice, but this figure is expected to rise by 8 to 10 new patients each year, and that substantiates what my colleagues have said.
Caring for patients with dementia can be time consuming and complex. This illness has a profound effect not only on patients but also on their families and on caregivers. Good care is truly a joint effort. Research shows that care provided by multidisciplinary teams provides the best results. A multidisciplinary approach has been found to improve the quality of care of dementia patients, reduce their medication use and decrease the stress and depression put on caregivers.
The role of what I refer to as the "circle of support" is crucial. The family practice care team can not only address the needs of the affected individual, but also connect with caregivers, provide them with education and support, as well as learn from them and involve them, when appropriate, in some of the questions to be made regarding care.
This type of inter-professional, patient-centred care is emphasized in the patient's medical home. It is our vision for the future of family practice in Canada. Dementia cannot be viewed in isolation. It is part of a complex continuum of a person's well-being that also includes any other conditions affecting the individual, the environment and the support network at home.
Knowledge and understanding of all of these factors by the family physician and the practice team provide for the most effective care. Getting to know patients in this way often requires additional time, and practice models have to encourage this in-depth type of care.
Having a continuous relationship with a physician would also aid in the very important early detection. Enabling this is crucial as it allows for early planning and shared decision making. Medication has also been shown to be more effective at this stage.
The Alzheimer Society of Canada has produced a variety of resources that enable these. Ensuring broader dissemination and uptake would aid these efforts. We had mentioned, as an example, the First Link program of the Alzheimer Society of Canada, linking patients, when they are diagnosed, with that program.
Home care has been referred to. It is an area that we believe needs to be addressed in this context. Most seniors want to live at home for as long as possible, even if they have a long-term health condition that limits their autonomy. The idea of home care and aging at home not only supports patients' self-determination and aging with dignity but is generally considered less costly than institution-based care.
In 2014, the college released a document called From Red to Green, in which focus was placed on home care. A national home care strategy, developed in partnership with provinces and territories, would foster increased standardization and increased support at home, and support aging at home with dignity and the preservation of autonomy.
It is encouraging that home care featured prominently in the newly elected government's election platform. It is unfortunate that this investment was not in this week's federal budget, but we do look forward to this much-needed support in the future.
In order for quality home care to be available, resources have to be in place to support the health professionals delivering these services. The college advocates for a robust health and human resources strategy that would take into account the population demands and the supply of health services provided by different health professionals. In addition, the crucial role of family caregivers has to be recognized and supported via programs that support their wellness and offer resources to further enable them to care for their loved ones in this difficult situation.
More needs to be done to ensure patients in rural and remote communities receive appropriate support. With a higher proportion of adults over the age of 65 in rural areas, greater demands may be placed on family physicians and other health care professionals. Appropriate community supports must be in place to address the needs of individuals with dementia.
Let me conclude by summarizing four points which I believe are well aligned with what my colleagues have said. We need a holistic approach to care. We need to appreciate the role of family physicians and the family practice team in a patient's medical home type of concept and model of care. We must ensure supports for caregivers and home care, and early diagnosis is critical.
Thank you. I look forward to collaborating with you and to the discussion that will follow.
The Chair: Thank you all very much.
I'm now going to turn to my colleagues for questions.
Senator Eggleton: Thank you very much. I'd like to explore how your professional associations help to advance, with your membership, the issues of dementia in four ways. The first is promoting specialization in geriatric medicine.
Second, what educational materials are provided to family physicians or anyone else or nurses? Does your organization prepare and advise your members on this?
Third, what training are you giving with respect to dementia issues?
Fourth, a couple of you have mentioned multidisciplinary teams. What do you do to advance multidisciplinary teams as professional associations?
I recognize that you've also covered a lot in terms of home care and informal care. Those are extremely important, but I wanted to focus on what you do as professional associations in this regard.
The Chair: Did you want to direct that to somebody first before we get under way?
Senator Eggleton: All of them, but perhaps we could start with Dr. Molnar.
Dr. Simpson: I'll invite Dr. Molnar, yes.
Dr. Frank Molnar, Vice-President, Canadian Geriatrics Society: I can jump in feet first and the rest will join me after.
I represent the Canadian Geriatrics Society, which includes specialists in geriatric medicine, care of the elderly — so that would be primary care, with third year in care of the elderly training — and other physicians and allied health who are interested in seniors' care.
What are we doing to promote growth of the specialty? We have certainly worked with provincial ministries to ensure there's more equity in pay. This has worked in Ontario. In the past, in Ontario, if you did three years of internal medicine, your pay would be this high. If you did two more years in geriatric medicine, your pay would be cut in half. That was a huge financial disincentive.
The Ontario Ministry of Health equalized that. As soon as that happened, our training positions filled up, and we started to have true growth within the province.
That still isn't happening in other provinces, where people stop practising geriatric medicine for half the year and do general internal medicine so that they can pay their bills. So we still don't have equity; we have a major financial disincentive to going into the specialty there. There are many barriers, but that's one that really needs to be addressed.
The other thing we are not doing: It's a bit of a mea culpa that we need to do. We are a relatively small society. We need help developing a physicians' resource plan for Canada for specialists in geriatric medicine, care of the elderly and geriatric psychiatry — the senior specialty groups. That should look at not just numbers but distribution.
Many of our specialists are still clustered in academic health centres, so we need to find out how we can extend them into the community and into rural regions. I certainly agree that the rural reach for dementia care, seniors care, is appalling. We need to find a way to distribute it across the provinces. Some provinces like Newfoundland and Saskatchewan have one geriatrician; others have 100 and something. So we really need to develop a physicians' resource plan with organizations that have clout and can work with the ministries of health that can give these specialties priority. Then we have to outline that priority and how these specialties will help seniors care and dementia care function more effectively and more efficiently so that we can do more with the dollars we have. It is not about investing more money; it is about investing the money correctly.
Dr. Lemire: Obviously, family physicians represent a large proportion of all physicians in Canada, and care of the elderly, including the diagnosis and management of dementia, is part of the core competencies expected of our family medicine residents.
Are we doing everything that we can in a two-year family medicine residency training, which is the shortest residency program among the countries that have discipline-specific training in family medicine? I think that is open to questions. Certainly we include that. All of our graduating family medicine residents are expected to have core competencies in care of the elderly, and diagnosis and management of dementia is a piece of it.
Dr. Molnar referred to what we believe is an important initiative for us. I don't like the term "specialization"; I prefer the concept of "enhanced skills" in care of the elderly. We now offer this through standardized competencies and enhanced care in the third year of residency for those who finish family medicine and want to enhance their skills in this area.
I see this as an important resource to support family physicians to provide comprehensiveness of care where they are not necessarily experts in the domain — to support them in the ongoing care of patients with dementia. Most of that care happens in the community and should be in the community.
We have made inroads. Are we doing absolutely everything? I believe that we have opportunities for improvement and that those opportunities require a system of care and an infrastructure support for practice which recognizes that good care for that population of patients cannot be done in isolation. It must be done with a multidisciplinary team and engage others, because these patients rarely have one condition. They have a variety of co-morbidities, and the best way to look after that is to work as part of a team.
That leads me to the multidisciplinary element. The concept of the patient medical home really supports the multidisciplinary team. In fact, today, we witness residents who say, "Well, we have been trained in these models and want to go and practise, but we are not guaranteed that we will be able to continue in our practice with those kinds of models of care." We believe that is important. There are opportunities for improvement for all of that, and we are actually working on all of that.
Ms. Pullen: I have a number of comments. On the question of specialization, the Canadian Nurses Association has a vast range of certification programs for advanced practice for registered nurses, including geriatrics and other fields. It is possible as a registered nurse to get additional professional certification in a specialized area. You will find practitioners in this field all across Canada. It's one of our largest groups of certified registered nurses.
Another point that I would like to highlight, which you're probably familiar with, is that there are close to 5,000 nurse practitioners across Canada. Nurse practitioners are highly trained registered nurses. Many of them would practice in the field of geriatrics or in long-term care, including populations with dementia. Nurse practitioners can be sole practitioners in any setting, although in some settings they work as part of multidisciplinary teams. Our health minister has a nurse practitioner working alongside her in her practice. Nurse practitioners are the sole providers for at least 3 million Canadians today, and that number continues to grow.
To give you additional context because I know you have some interest in the needs of rural and remote communities, within the First Nations and Inuit Health Branch of Health Canada, there are 875 registered nurses and nurse practitioners employed and only 23 family physicians. You can see who the largest population of care providers is and how it's allocated to on-reserve communities in rural and remote locations.
On the education front, I find it really interesting. My PhD research was in the field of knowledge translation, looking at moving research into clinical practice. Within the Canadian Nurses Association, that's a real focus for us and important area of emphasis for our work. We work extensively to develop resources and tools for registered nurses, for the general public, and for our multidisciplinary team members as resources to support care across all health conditions and across the continuum, including long-term care.
We also develop considerable policy to inform practice to support not only registered nurses but also a publicly funded Canadian health care system. Quite a lot of education goes on at those levels. We work closely with the Canadian Association of Schools of Nursing and with the nursing regulators across the country to ensure that nursing education continually refreshes itself and that the curriculum keeps pace with the needs and demands of the health of the population. That's an ongoing process.
I would say out of interest that as part of nursing education, it would be fair to say that generally your first clinical rotation is in a long-term care setting, so there is considerable exposure to this population and their unique needs from the very first day that you set foot on a ward.
From a training point of view, I have said enough, but I want to finish with a comment about multidisciplinary practice. To build on what Dr. Lemire has said, no practitioner works in isolation in any discipline. Nurses have been the hubs of health care teams and important contributing members to health care teams. As the largest population of health care providers in Canada, there is no doubt that we are experts in care and at the very front line for this vast population of long-term care patients.
Among other things, nurses play a key role in helping patients and families navigate a complex health and social system. That's a specific expertise that we contribute to the team. As I mentioned earlier, nurse practitioners frequently work as sole practitioners in coordination with or in leadership of the multidisciplinary team.
Senator Stewart Olsen: Thank you all for being here.
I want to speak about the recommendations that Dr. Simpson brought forward. They deal a lot with what the federal government can actually do. In my experience, it's mostly tax credits, but you do mention a dedicated fund. The problem the federal government runs into is with provinces and dedicating funds. How would you see that working? Are you recommending that perhaps for this particularly important issue we actually separate out the funding for dementia services or for these multidisciplinary services in a national strategy? I'm not sure how that would work, but it seems that we could get some kind of control over what is happening in the provinces, even though they would have the ability to decide themselves, to make sure that those monies were spent where you're actually recommending. Can you give me a comment on that?
Ms. Pullen, you mentioned that you had a vast number of models and had learned many areas of expertise. If nurses learn areas of expertise, the most practical things, it would be very helpful to our committee if you could send us that information so we could study it.
Dr. Simpson: I reflect back to the 2004 Health Accord, which we have spoken about. The evaluation you did of that outcome was excellent. If we have made a mistake collectively over the years, it's that when the federal and provincial levels of government have intersected to figure out how to do these things, it has been a kind of one-time event focused around who is going to get what money. It's not really about the outcomes we want to achieve. As a matter of principle, we could do things differently this time. Rather than have a summit as though it's between two opposing forces, we could talk about how to create a new kind of partnership so it doesn't become a case of $3 billion goes to this or to that and evaluate the outcome in 10 years. Rather, we would create an ongoing partnership that understands that the two levels of government can be better than the sum of their parts and that, in fact, they shouldn't be at odds with each other. It may be difficult to work out exactly what is the federal role and what kind of accountability is going to be attached these funds. Those are difficult conversations. I would submit that the mood of most of the stakeholders now is more in a space where that kind of accountability can be built in.
Surely we can all agree that what we're trying achieve is an outcome for patients that, overall, results in people staying out of hospitals for longer and getting better value for the money. We didn't have that kind of language in 2004; it was about who is going to get the share of the cash that is available? I think those kinds of mature partnerships can lead to better outcomes.
I hope that answers your questions. I don't have a magic bullet as to how these things would work, but I think the process to get there would be one that says, up front, that we're more interested in the outcomes than the outputs.
Senator Stewart Olsen: I think so. As much as you could, you have answered it. I like the new kind of partnership and the new language. Thank you.
The Chair: Dr. Pullen, would you forward to the clerk any information you have?
Ms. Pullen: We would be very happy to do that.
The Chair: Thank you very much.
Senator Seidman: Thank you for appearing here this morning to help with this challenging issue.
I wholeheartedly support the concept you put forward, Dr. Simpson, that is, I think you said de-hospitalization. Aging in the community, as you have all talked about and stressed, demands that the government move some budget from acute care to community care. We all recognize that. But other than budget, aging in the community will put demands on all health care professionals — the physicians, the nurses, physiotherapists and other practitioners on the team — as well as the families and the caregivers.
So my question for all of you is: What absolute requisites — let's say two or three — would be necessary to make that kind of transition feasible? Throw out warehousing and hospitals, and maximize a constructive aging in the community.
Dr. Molnar: I'm going to be the jump-in-with-his-feet-first guy.
I think we need to look at what the team and the community means. Multidisciplinary care arguably started with geriatric medicine 25 years ago, and it's great to see everybody else is adopting it, but to my mind, we are talking about teams that are far too small. We're still talking about siloed, multidisciplinary care in one practice. If we really want to shift to community-based care, we really need five pillars working together:
One is primary care, and another is nurses, who have been instrumental in managing many chronic diseases.
Specialists: When we look at a lot of the changes that are happening in Ontario in primary care and health links, specialists are completely ignored. They are not part of the equation; they are not part of the discussion. You're never going to keep the sickest, most complex patients out of hospital until the specialists are involved in community care. Specialists right now provide community care from hospital-based clinics, and those clinics are being cut as the budgets are being cut. Specialist support of community care is going to decrease unless we find an infrastructure.
Home care: We need Home Care Plus. Right now, home care is focused on the services we have to provide. It really has to start looking at questions like: Why we are providing this? What is the underlying etiology? Why is deterioration going on?
There are some good examples of integration. There is a nice meshing of home care and primary care going on. I think that's going to be very valuable, but once again, specialist care has not been integrated. There are some examples in this region, such as wound care, where the specialists are integrated, and it provides a really robust home care model. We need to get away from thinking of home care as, "We will give you a bunch of services based on need." We need them be the boots and eyes on the ground and have them work with specialists and primary care.
The fifth pillar, which is probably the most important, is the person with dementia and their family. We do need that health literacy and that empowerment. We need to give them navigation tools: How do you navigate the system? We are trialing some navigation experts in this region. It's not going to be all web-based. Seniors are not going to go to the Internet and find their way around the system; that's not going to happen. We really need to look at those five pillars: primary care; nursing; specialists, like geriatric medicine and geriatric psychiatry and cognitive neurology; Home Care Plus; and the family and person with dementia. That's the team we need to focus on. It's not just a multidisciplinary team in one practice.
Dr. Simpson: I'll take off my CMA hat for a minute and tell you how it feels on the ground as a hospital administrator and a specialist. I have said over and over again that we need to de-hospitalize the system and invest relatively more in the community. I'll tell you that we have stopped investing in the hospital sector and have invested more in the community sector in Ontario, for example, but it sure doesn't feel like it on the ground.
The thing we're supposed to transition to hasn't been built yet, so the hospitals, at least in this first phase, are bearing all the brunt of the aging population and the consequences that come with that. Life is no different for me as somebody who is trying to get my 105 per cent occupied hospital emptied out every single morning, because the services on the outside are no better or, perhaps, even a little worse.
A couple of years ago, we had people from the CCAC in Ontario as part of our team in the hospital, but as they have been cut back, that person has now left. The integration, in my world, has deteriorated. We have not yet built what we want to transition to.
Part of the federal help here, perhaps, might to be kick start the speed with which these communities-based structures can be built, because they are out of phase. The wind-down or the relative investment away from hospitals hasn't produced the results yet that actually are meaningful, so that patients are actually going in greater numbers to these new resources.
Ms. Lemire: I don't want to repeat what my colleagues have said. I support everything they have said.
To add to what has been said, being nimble around transitions is really important. As a family doctor working in the community, I must not feel abandoned if I feel that a patient requires a particular community support or needs to be admitted to hospital for whatever reason. I think that there are some tremendous gaps in that transition from primary to secondary care, and the access to community resources. I think that good investments in that could really help to operationalize, in a more seamless manner, the kind of pillars which Dr. Molnar referred to. I do think that is an area that requires some dedicated energy and where there are some issues.
As I think of my practice in Corner Brook, Newfoundland, a town of 20,000 people, in some ways it was easier to manage transition and to activate things because I knew the consultants and I knew the community resources. I could pick up the phone. Practising in Toronto on a part-time basis, which I did prior to assuming this role, was harder. There was a vast sea of people; I didn't know who to call and didn't know which resources to actually pull in when necessary. There are some particular challenges, also, that need to take into account the size of communities and the reality of each community, big and small.
Ms. Pullen: I agree with the remarks of all my fellow panel members, but I would like to add a few things.
First of all, in our consultations with ministers in the last four months or so, we have been repeatedly asked a similar question, which is that we are getting a clear sense of what to do in terms of shifting to community-based care, but we really need help in figuring out how to do this. It will be of interest to you, I think, to know that the Canadian Nurses Association, the CFPC, the Canadian Home Care Association and other key stakeholders are coming together over the next four months or so to focus specifically on the policy and practice levers to enable that transition. On that point, I say, stay tuned: We are working very aggressively to try to collaboratively answer that question. More on that is coming.
Your specific question was to name three of the biggies, and I would expand slightly on the need for dementia- friendly care and communities. Again, there are examples of how to do this well in institutions, communities and specialized settings within Canada and internationally. We would like to profile some of those for you. We'll follow up on that.
Helping the general public understand and destigmatize dementia would go a long way to helping people understand why it's important to be healthy and stay healthy when you're young, so that your health is better as you age. Also how to really support with dignity and grace individuals who are affected with dementia but who we want living with us in our community instead of warehoused in an institutional setting. So dementia-friendly care is first and foremost.
Along with community-based practice, there are also specific care practices that you would see on the part of health care providers which enhance care for people with dementia. Those are skills that are part of health care provider educational curricula.
Our first recommendation was on a national commission to look at the integration of health services across Canada. I would reinforce what was said about looking at how health and social services can work more seamlessly across the continuum.
Senator Munson: Dr. Simpson, when you talked about New Brunswick, I had a vision in the 1950s growing up as a child in Campbellton, New Brunswick, of Dr. Dumas, Dr. McPherson, Dr. McLennan always moving across the town from Hotel Dieu to the Soldiers' Memorial Hospital to homes, doing their work. The doctors were ever-present as a child. The doctor was there in your home. So we're having that conversation about being back in the home where it was once done very well.
One of our esteemed leaders here at one time, Dr. Keon, always told me when I was pushing for a national strategy on autism to make sure and ask the question about research. Research is so important. I haven't heard the word "research" in any of the presentations this morning. Where does that fit into all of this, making sure that proper monies continue to go to unlock the brain, and having new ideas?
You alluded to residential villages for people with dementia. I would like to know what that means. Is that a village where people with dementia are isolated? Sometimes I think of a mental hospital in Campbellton. A lot of this is personal, too, for some folks that I know. They were lumped into a residential village but inside an institution or in Saint John, New Brunswick. I have fears of those kinds of things.
Dr. Simpson: The research is critical. There has been a lot of talk, particularly at the international summit, about research to find a cure. That was the type of language that the cancer community used for a long time. It's very attractive for fundraising.
The reality is that research into better treatments, as important as it is, is likely to be incremental. There may be some eureka moments along the way, but we're not going to eliminate dementia from the landscape anytime soon. That's not to diminish the importance of that research.
In Canada, where we really need to focus is on health services research. It's research that can only be done in Canada because of our unique circumstances of geography, demographics and cultural mix. All of these things require research to figure out how to do this well. We need to create a functional plan to look after people with dementia better in Canada. It's less glamorous. It tends not to make the headlines. That is where we're going to get the most bang for our buck. If we invest in health services research, we're going to learn how to do things better and more efficiently in the Canadian context.
Dr. Molnar: Where we invest in research is critical. I was asked to consult on the World Health Organization research agenda. Pretty much the same ideas that came up in Canada came up on that agenda.
Health services research has been ignored for a long time or has been the poor second or third cousin of research. It's really starting to come into its own now. The federal government, via the CIHR, has invested in the Canadian Consortium on Neurodegeneration in Aging, the CCNA. It's looking at research questions that are critical.
One is what is the best primary model for dementia care? There are a number of models being tested. There is a physician champion model which is the Linda Lee primary care collaborative dementia clinics in Ontario. There are 78 such clinics, which have a physician champion. They have strong nurses and strong allied health. They are linked to a supporting specialist or two. So that's a growing model.
There is a nurse-led model and a nurse practitioner-led model in our region which are being studied.
There is a model not being studied where geriatric assessors go to family health teams and talk to patients and then talk to the primary care provider.
Then there is the traditional model of referring to a specialist when you can't handle dementia on your own.
There is a variety of models, and I think the CCNA is looking at which primary care model works in which setting. It's not one size fits all. Primary care is very heterogeneous. In order to meet a lot of varied regional needs, we will need a whole suite of different models and we must figure out where they fit best and where we can make them fit.
The other area that needs to drive and ground everything we do is what is important to caregivers? Caregivers who are now integrated into all of our dementia committees tell us there are three things that break their backs and result in hospitalization and premature long-term care. One is behaviour; two is lack of sleep; three is urinary incontinence. Another mea culpa, when you look at specialty dementia clinics, is that we don't address sleep or urinary incontinence. The medications we use, cholinesterase inhibitors, can interfere with sleep and cause urinary incontinence. We are not even matching our clinical expertise with what caregivers say they need to stay in the community.
We don't have escalation procedures. What do we do if someone is behaving aggressively? What do we do if the caregiver is not sleeping? They can't wait 7 or 10 days to be seen. They will be in hospital themselves. Dementia puts a lot of caregivers in hospital. Even though we're talking about three-quarters of a million people with dementia, two to three times that many people are at risk for hospitalization.
CCNA will look at caregiver research and what is important to ground us. I don't think they will be looking at home care models. Once again, we need Home Care Plus. In this region, we had home care dementia teams many years ago. Those home care coordinators developed a great deal of expertise. They became the system navigators. They could get people to help quickly, a system that worked really well that was shutdown.
Those would be some health services research questions. I have to commend the federal government and CIHR for investing in CCNA.
Dr. Lemire: We also welcome the investments being made in and through CIHR. We now have the SPOR Networks — Strategy for Patient-Oriented Research. A big focus of these networks is to increase knowledge and understanding of what is happening on the ground as it relates to the complex patient. I think we can agree that patients with dementia would fall in this category. So I'm not aware of specific questions pertaining to dementia, but I do know that is a particular focus of this. There is a call right now for a national co-ordinating office for the SPOR Networks. The college will submit an application, which is due next week. Part of the reason for that is our belief in the importance of doing this and the importance of asking and answering the right questions as they relate to the management of complex patients in our society.
The Chair: We are going to close this off with Ms. Pullen. If you have a comment on the other, that's okay, but focus on the model, please.
Ms. Pullen: I agree with the comments on research and that population health is where we need to focus.
In terms of villages, the best examples lie outside of Canada. They are rooted in the desire to de-stigmatize dementia and to find a good balance between safety, quality of life, and dignity. They also rely on our collective desire to not isolate people with dementia in settings where they are separate from the rest of the population — populations of all ages — and safe opportunities to be outside as opposed to inside, or to travel safely within a community to be part of regular community activities.
I share your concern. We certainly don't want to create isolated villages, but there are creative opportunities to integrate living with dementia into the rest of civil society and find that balance between safety, autonomy and quality of life.
Senator Raine: I have a point of clarification. Dr. Molnar, did you say that the CCNA is not being funded any longer?
Dr. Molnar: No, it is being funded through the CIHR, and its activities are expanding quite rapidly.
Senator Raine: Good.
I would like all of you to clarify something. There are a lot of different terms being used here, and the average person might get confused. Home care, for instance, does not necessarily mean in the house that you grew up in; it could mean that you are at home in a seniors' residence. Home care is sometimes delivered in individual homes where you have to travel a distance to give care, and sometimes it's where people are collected in a seniors' community or village, and the care is probably more efficient to deliver.
Do I understand that there has been no government funding for these kinds of villages, or did that depend on each province?
Ms. Pullen: I couldn't definitively answer that question. With Canada being the country of pilot testing, I'm sure there are pilot sites in different communities that we are unaware, but there has been no harmonized commitment to the scale-up of particular initiatives around home care. If you were to talk to the Canadian Home Care Association, they would say that we're still looking for harmonized principles across Canada as opposed to minimum standards that might incite a race to the bottom — but harmonized standards that we can as spire to across Canada to meet those needs.
Senator Raine: I had a situation a few years ago where my sister had been diagnosed with Alzheimer's. I was looking for a place for her to reside. She was on her own and her spouse had passed away. Fortunately, she was diagnosed early, so she could make her own decisions. I've been very impressed with where she is living now because there is a continuum of care. She was on assisted living and now has moved to residential care where she is safe, secure and happy. There is an intermingling of the two, so if you have a couple where one needs more care than the other, they can be in the same facility.
Is this a common model of facilities across Canada, or was I just lucky?
Ms. Pullen: I would say that is a common model. I'm aware of institutional settings, even within Ottawa, that practice that way and that deliver excellent care with very high patient and family satisfaction along those lines.
I would say there is still more that we can do.
I want to reiterate the point that about the integration of health and social services along these lines. To keep people in their home for home care, you really do need individuals beyond healthcare providers aware of how to work with, recognize and care for individuals who might still be independent or living with their family member at home but who have dementia, versus those in a residential setting that we would still call home care but that really have those supports built into the services around them already. Home care, as you say, could be characterized as being delivered in both of those settings.
Senator Raine: I have been impressed with this particular model, because I would say there are a fair number of people who live there who do not have dementia, who are active and who are part of the community. The community is much broader than people with dementia.
If that is a good model, then we need to ramp it up and build more of them effectively and efficiently. Do you think there is a possibility for public-private partnerships — P3 funding — to those facilities? Would we need the government to take a look at making government funding available, along with private funding, for those facilities?
Ms. Pullen: There are many potentially successful models, including P3 models. I can't speak in greater depth on that, but we would be pleased to get back to you with information, if that would be helpful.
Maybe some of my colleagues could speak to that.
The Chair: We want to get all questions in, so if there isn't anything specific to answer, we'll move on.
Just before I move to a second round of questions, I want to come into the discussion here.
Now, you have articulated in considerably more detail from the professional practice point of view issues that we are hearing throughout with regard to identification, treatment and health in this whole area of dementia.
The issue that keeps coming up was said here today: We're a country of pilot projects. The reality is that this committee has studied a lot of health issues nationally, and in every case we have seen nothing but balkanization and no evidence of any mechanism to take best practices and transfer them within a county, let alone within a province or country. I don't want to imply there are not a few that have occurred, but in general, that's what we get in terms of testimony before the committee.
It seems to come down to a lack of an organization that has the authority and the mandate to look at things across the country. The federal government has a national role, but in the area of healthcare, we have the national government with dollars and we have the provinces jealously guarding a constitutional authority to decide how those dollars will be spent in certain areas — in this case healthcare — within the province.
We have short-term political mandates and political issues around getting re-elected. All of that seems to be disconnected in terms of decision making in these areas from those who are charged in each province to manage a hospital entity — even maybe two or three hospitals in a large community — that seem to spend most of their time trying to figure out how to cut the janitorial services to save money as opposed to looking at how to identify and implement best practices, let alone take an issue like the broad spectrum issues you have identified that are necessary to deal with dementia patient in a community and lifestyle setting.
I'll give one more background piece. We have organizations in this country that are capable of operating pan- Canadian, without the difficulties that I've just described, such as the Alzheimer Society, which has provincial wings and a national wing. I don't know whether it's terribly effective in this area, but I'm saying it is an organization that falls outside of constitutional limits on how a national program interfaces with provincial organizations.
The question I want to put specifically to you is this: In developing a national strategy, do any of you see the possibility of identifying an existing organization or the idea of creating one that would have the capability to actually take on an issue like a national dementia strategy and deal with all the issues that you have talked about in this balkanized country, and move and implement best practices that are identified in one area into other areas where they might be appropriate?
Dr. Simpson: I couldn't agree with you more. I've said a few times when this discussion has come up that I would advance the argument that we are more siloed than ever before, because when times get tight, we retreat to our balkanized silos.
If I think of my own experience in a hospital, everything is about, "How are we going to cut $20 million out of the budget this year?" You wind up with irrational rationing. I have no way of using my budget in a hospital to invest in something outside the hospital that I know is going to help my bottom line. I can't do that. I can't move the money around. There is no system.
What you said, I think, was reflected a lot in David Naylor's report. He's talking about creating a national agency or body that would have the resources and the authority to effect and roll out some sort of national plan. There are political and constitutional barriers to get over.
Maybe the scaled-down version of that would be if you were to ask, "What can the federal government do to facilitate that?" It would be to leverage the agencies that we have, like Canada Heath Infoway and the Canadian Foundation for Healthcare Improvement, things that can give the stakeholders information and a means to evaluate their performance. Public reporting of that performance is a great way to create a lot of public pressure.
What can we do with accreditation bodies to really come up with meaningful metrics? As important as handwashing is, I can think of many more things that I would prioritize over whether or not everybody is washing their hands in the hospital. I'm not saying, "Don't wash your hands." I don't want to see any quote on that, but, honestly, the metrics that we are held accountable for in the hospital are about number 250 through 275 of what is really important.
Don Berwick writes very eloquently about this in the U.S. We need meaningful metrics. Some of the federal agencies have the potential, if not the existing resources and expertise, to really help us to meaningfully evaluate ourselves and be held accountable for meaningful outcomes.
If we wanted to get really grand in our vision, we would read Naylor's report and say, "Let's make that happen." If that's not possible politically or fiscally, there is a huge federal role in creating an environment where we can develop national standards, measure performance against those national standards, publicly report them and create accountability through that.
The Chair: If any of you think of some thoughtful idea in this area after you leave, would you please send a note? You don't have to have it worked out in great detail, but if you get one of those lightbulb ideas in this area, would you please send it to the clerk?
I have two other aspects that I want to touch on very briefly. With regard to the ways of federal government funding in this area, for the reasons that I have already elucidated, they don't work in terms of accountability. Nothing could be more glaring than the billions that were put into specifically reducing wait times over a period of years. We know that 90 per cent of that money went into increasing salaries and creativity on the part of hospitals with regard to how they measured wait times. The issue that we have in setting up a national program is very serious in terms of the constitutional balkanization that we have.
Finally, I want to give an example with regard to — and you spoke very eloquently — the frustration of developing models in yet another pilot model that might work. We have studied a number of things, and following our studies, a number of health leaders have come to my office to discuss examples of the frustration that has occurred.
I've heard about a number of clinics in Ontario and the different ways in which they have come up with creative models of a community kind for providing a number of services that normally people would just rush to the hospital for, but that can be handled in a community clinic. They have started off well, with support from the health regime, but very quickly have been terminated because they don't fit the funding model. So one of the major things we've identified in a number of our studies, particularly in looking at the health accord, is the funding model issue and that it provides a significant barrier to innovation within the issue.
The other thing is that in most systems of innovation, there has to be a driver for innovation. Usually, the most successful driver is competition, and we have very little competition within the delivery of health care in the country.
These are all issues that underlie the great things you're suggesting here today. These are the issues of actually getting there. Once again, I'm going to ask you not to take up more time philosophizing on this today, but if you have thoughts on examples regarding any of these aspects, please forward them to us. They would be very valuable to the committee. By this discussion, we have gotten it on the record, which we are required to have with regard to dealing with it in a report, and we would like your further thoughts.
I will now go back to my colleagues.
Senator Eggleton: Dr. Molnar, the Global Deterioration Scale — I think it's also known as the Reisberg Scale — divides dementia into seven stages. Is this a valuable instrument for the profession, or is it a valuable instrument for the public to be able to use? Is it valuable at all?
Dr. Molnar: I don't use the GDS in my practice. It is helpful, I think, once somebody has the diagnosis of dementia and their family has started to process the diagnosis — because there is often a traumatic period when that diagnosis is given, and they have to work through that — when they come back for the second, third and fourth visit, to help them to understand where things are going so that they understand that this is not a stable disease and here are the functional changes.
I don't really care about the GDS numbers; it's walking them through how function will change over time, what you need to prepare for, getting the big picture or long picture. You have to do that at the right time, when the person is cognitively and psychologically ready for it. It is certainly something that can be used through the Alzheimer Society, which is a fantastic volunteer organization, a charity that does a lot of education. In fact, it does much more education than the physicians and the clinicians do. It's a useful tool to give the big perspective.
Senator Eggleton: You primarily tied that into the professional use of the scale. What about people trying to determine whether they have normal aging, a normal cognitive problem, a normal memory loss problem versus dementia, versus something far more serious.
Dr. Molnar: What helps that is early self-screening and family screening.
Senator Eggleton: Could this scale or some other scale be valuable for the public?
Dr. Molnar: The list that I would promote using would be the Alzheimer Society's 10 signs of dementia. That's what I give to my patients when they don't yet have dementia but are at risk. I ask the family to monitor for these signs and say, "We're going to bring you back in three, six, nine months." It's one that's been televised, I think.
The stroke field has done a fantastic job in terms of televising signs of stroke. We all know what they are and what to do when they occur. It would be nice if we could do a bit more of this with Alzheimer's in a way that doesn't frighten people. If that doesn't work, we have to examine what the other barriers are. Why are they not coming for help? Is it fear? Is it a sense that nothing can be done? Are there other things we need to feed into the public messaging? The Alzheimer Society's 10 signs is the list I would go with.
Senator Seidman: Dr. Molnar, in your brief to us, you said that Canada is graduating 15 to 25 specialists in geriatric medicine a year, far behind other specialties that do not have a severe physician resource shortage. You said this contrasts with the U.K., where geriatric medicine is one of the largest of the internal medicine specialties.
You talked about salary issues and a lot of concentration in the academic hospitals as additional problems or perhaps related problems. My question is: What is going on in the U.K. that gives them or provides them success in recruitment that we seem to lack? I ask that with specific knowledge of a U.K. report that came out just this month entitled Challenge on dementia 2020: implementation plan. Could you help me with that?
Dr. Molnar: There is some good news. We've had a bumper crop in Canada — up to 51 Royal College residents and 24 care-of-the-elderly residents in training now. We're doing better as the salaries are starting to equalize in the different provinces. It's not enough to catch up, but we are not falling behind as fast.
The practices in the U.K. and the U.S. are different — it's almost a different specialty in each country. In the U.K., geriatricians are acute care internists. They are generalists and stroke physicians who do some dementia, but maybe not as much as we do in Canada. In the U.S., geriatric medicine is a primary care specialty. They have 7,000 physicians who do primary care.
In Canada, it is more a consultation specialty. The model was designed to recognize we were behind the other countries in starting the specialty and then catching up and also to look at where we could get the biggest return on investment, which would be more in consultation, focusing on the most complex. They are somewhat different specialties in different countries.
In Canada in terms of physician resource planning, we need to ask some careful questions. It's not just about the numbers. Where can we best use geriatricians? We need less concentration in academic health centres and we need to get them into the rural communities. We need greater integration with primary care, as we're doing with the Linda Lee primary care memory clinics. We need better distribution across the province. We need to look at how we are using them.
For instance, I'm a practising physician in a hospital. I spend a lot of time on my acute care ward, where I deal with dozens of patients. When I go on to consults, it increases the number tenfold. When I work with my geriatric outreach teams in the community, I review 2,000 to 3,000 cases. All of that is for the same pay. In fact, the community work with outreach is not really billable, so it's kind of free work. We are not investing where we can get the biggest bang for the buck and the greatest reach. We have to ask what this profession should be doing and where it can do the most good in the country. Then, based on that model, we have to determine where we need the people.
We have not done the foundational work, and the Canadian Geriatrics Society does not have the resources to do this on its own. We need a national body to take this on and look at physician resource planning in the senior specialty services: geriatric medicine, care of the elderly and geriatric psychiatry, the three groups specially trained to care for complex seniors. Where do we need them? Once we know where and how we need them to work, then we can figure out the numbers we need.
Senator Seidman: What would the national body be?
Dr. Molnar: I have no idea. That's one of the reasons I come to tables like this — to get ideas from you.
Senator Stewart Olsen: Have any of you given any thought to a national strategy that would set a national protocol for the education of caregivers? We see what is happening and it really is the caregivers who are out there. I know, in doctors' offices, primary care and nursing, you give as much as you can, but it is certainly not comprehensive. People feel lost and alone if they are dealing with this and trying to keep a relative at home.
Ms. Pullen: In our recommendations, we included within the scope of the federal government's role to have funding for a resource portal for information of all kinds, whether evidence-based research or practical tools for a lay audience. Certainly there's a need for that kind of centralized, fact-based resource tailored to a variety of audiences. We would support that as part of an initiative for a commission or a partnership or whatever national entity we can develop.
Dr. Lemire: I agree with what has been said. I also think, notwithstanding your comments, that we should find out what is going on that's promising. The Alzheimer Society is doing a lot of work with caregivers. That's one type of dementia, I agree. What are they doing that's good that we can borrow? How do we scale up? We all have the same challenge: how to scale up that innovation and the excellent work already being done in this country.
Dr. Molnar: Knowledge for caregivers is a starting point, but it's really not enough. One word we haven't used here is "respite," which is a key word. As our caregivers talk to us, we health professionals learn more and more about respite. We have day respite and nighttime respite. Now, our caregivers are too worn out to organize the respites. We need to look at in-home respite.
Quebec has an in-home respite program with volunteers that provide the service for those with dementia. Once such a person leaves the home, they deteriorate and have behavioral issues. Knowledge is important, but some caregivers are so worn out and stressed that they can't incorporate any more knowledge at that stage. They need really meaningful respite. We are just learning that some of the programs we've offered are not the right programs.
The Chair: You made some other points relative to that when talking earlier about the issue. We are identifying that as a major issue.
Dr. Lemire, I didn't want to imply there are not some good things, but the problem is we are not disseminating them; and we don't get them infected into other societies. Maybe the infection model is a way to look at human activity as opposed to microbes.
Dr. Simpson, I want to make sure I heard you correctly at the beginning of your introductory remarks. I thought I heard you say that it really is not just a dementia issue because most people with dementia have other problems as well. I want to be clear that I understood the implication of what you were saying. It is my understanding that dementia for many people goes through a development to a final complex stage. In the early stages of dementia, you could very well have people who do not suffer from other major medical illnesses, whether diabetes or others in terms of the end-stage of these activities. Could you clarify your intent and what you really said?
Dr. Simpson: The intent of the remark was that persons with dementia tend to have other chronic diseases more so than people who do not have dementia, partly because the risk factors are the same. The point of the remark was simply to reflect that when we do a study or talk about patients with dementia and try to imagine their trajectory so we can map out their needs, the trajectory is often these other chronic diseases. A person at home with moderate dementia may come to the hospital typically not because they have dementia but because they've had a heart failure exacerbation. They intersect with people who are not in the dementia world that we all imagine when we think of that care.
As a cardiologist, I see people with dementia all the time. Do I have any expertise in looking after dementia? Not really. There's that added complexity. It goes to Frank's comments about building a team around the person with dementia that recognizes dementia is not the only problem, because these are the things that precipitate hospital admissions.
The Chair: Thank you. That helps to clarify the issue. The issue, and I think a couple of you have mentioned it, is the difficulty in getting people to seek out advice. Some of the evidence seems to suggest that if you can catch it early enough in the recognition factor, there are things you can do that decrease the rate of progress towards significant elements. That is some of the evidence in the documents that we have received for the study, so thank you very much for that.
On behalf of the committee, I want to thank you for the tremendous clarity and experience you have brought to our discussion on this topic and the complementarity of the things you have been saying to us.
I do want to emphasize that if the lightbulb goes on for any idea, please get that to us. You have testified before us, so it's relevant, and we can take that into consideration in our discussions. It doesn't have to be solved to the 75th- page-detail of the research application for funding. The idea is issues that deal with the overall management of it across the country, down to the local areas that you have discussed. If you have any ideas on that, please pass them on.
(The committee adjourned.)