Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue No. 7 - Evidence - May 11, 2016
OTTAWA, Wednesday, May 11, 2016
The Standing Senate Committee on Social Affairs, Science and Technology met this day at 4:15 p.m., to continue its study on the issue of dementia in our society.
Senator Kelvin Kenneth Ogilvie (Chair) in the chair.
[Translation]
The Chair: Welcome to the Standing Senate Committee on Social Affairs, Science and Technology.
[English]
I'm Kelvin Ogilvie, from Nova Scotia, chair of the committee. I'm going to ask my colleagues to introduce themselves.
Senator Eggleton: Art Eggleton, senator from Toronto, deputy chair of the committee.
Senator Merchant: Hello. Pana Merchant, Saskatchewan.
Senator Olsen: Carolyn Stewart Olsen, New Brunswick.
Senator Seidman: Judith Seidman from Montreal, Quebec.
The Chair: I want to remind the committee that we are continuing our study on the issue of dementia in our society. We are going to hear from the three witnesses who we have before us today. We're delighted that you're able to be with us.
I'm going to invite you to make your presentations first in the order we agreed, and then I'll open the floor up to questions from my colleagues.
With that, I'm going to ask Dr. Katherine McGilton, Senior Scientist, Associate Professor, Toronto Rehabilitation Institute — University Health Network, and you're appearing as an individual.
Katherine McGilton, Senior Scientist, Associate Professor, Toronto Rehabilitation Institute — University Health Network: First, I would like to thank the Social Affairs, Science and Technology Committee for the opportunity to speak today.
As a registered nurse, a senior scientist at Toronto Rehabilitation Institute-University Health Network and an associate professor at the University of Toronto's Lawrence S. Bloomberg Faculty of Nursing, my career has been dedicated to finding ways to enrich the quality of life and functional capacity of persons living with cognitive impairments, including dementia.
Recently I was an expert panel member for a global think tank in Denmark focused on reablement and rehabilitation for persons with dementia.
What I will be speaking about today is the lack of access to rehabilitation in hospitals, nursing and retirement homes and in the community for persons with dementia. This has a profound effect on their ability to age well. This is a national crisis and for the most part exists because there is a nihilistic belief that a diagnosis of dementia makes the person unable to participate effectively in rehabilitation.
Canadians are living longer; however, not all Canadians are enjoying good health and well-being as they age. As the population continues to age and life expectancy increases, the number of Canadians living with multiple chronic diseases and complex health issues will rise. This is particularly true for older persons with diminished functional and cognitive reserve, ranging from mild cognitive impairment to advanced dementia. These persons with dementia are at risk and vulnerable for institutional care prematurely.
As they age, the majority of Canadians want to continue living at home despite their health problems. However, for older Canadians with dementia this is often not possible. These Canadians have health issues and cognitive symptoms that hinder their day-to-day functioning such as the ability to dress, eat or walk as their disease progresses. Thus, aging at home is significantly more challenging.
These losses of function not only adversely impact their quality of daily life for persons with dementia; they also means hard work and risk for the primary caregiver, who is often an aging spouse. Publicly funded home care for these families is in short supply and, when available, often does not focus on maintenance of function or prevention of decline. As a result, many persons with dementia become dependent on others for care and, hence, require institutional care.
In addition, if and when a person with dementia suffers a setback, like a broken hip, and requires acute care hospitalization, that person will most likely experience a significant decline in function. Based on lack of resources and knowledgeable staff, and frequently an absence of valuing maintenance of independence, persons with dementia are at great risk in hospitals for cognitive and functional decline that is beyond what is expected of their disease.
Unfortunately, many such persons with dementia will become known as individuals requiring Alternative Level of Care and incur higher system-wide costs than other groups and will wait in acute care until a bed in long-term care becomes available, further diminishing their function.
Following discharge from acute care hospitalizations for the lucky few, we know that persons with dementia receive little to no access to the sparse rehabilitation services in Canada to help them regain their lost function. This nihilistic belief that a diagnosis of dementia makes the person unable to participate effectively in rehabilitation leads administrators and health care practitioners to give scarce resources to the patients who are cognitively impaired no matter where they reside.
It is important to point out here that contrary to this belief, evidence is accumulating that persons with dementia can be rehabilitated. As a result of this evidence we are witnessing the emergence both nationally, which includes our work at Toronto rehab, and internationally of a few rehabilitation and reablement programs that include this patient group. These programs are showing positive function and health outcomes for persons with dementia.
These efforts at providing appropriate rehabilitative services are, however, modest, and, as has been noted, are in their emergent phases. Moreover, when persons with dementia have a significant decline in function, not necessarily brought on by dementia, the solution that is still too frequently used is to place these persons into long-term care facilities. This solution raises concerns.
The first concern is that entering a long-term care facility is counter to everyone's desire to stay at home. The second concern is persons with dementia lose function at a greater rate when admitted into long-term care. This is due to the lack of appropriate rehab services in long-term care. Recent evidence from a survey across Canada's long-term care facilities indicate that between 63 and 86 per cent of residents do not receive any physiotherapy or occupational therapy in long-term care, and that older residents with cognitive impairment are less likely to receive rehab services. Staff and nursing homes are not able to retain the functional capacity of older persons living with dementia who now make up more than 62 per cent of the persons living in these facilities. These numbers will continue to grow.
So what is the gap? What do we need to help persons with dementia today? The World Health Organization report on aging contends that we need to devote resources to enhancing and maintaining function and independence in functionally challenged and at-risk older people like those with dementia who create a burden on formal and informal caregivers by accelerating their levels of dependency. I absolutely concur with this.
To this end, I offer four strategies. First, make rehabilitation and reablement services more available to persons with dementia. These services should focus on enhancing and maintaining the ability of persons with dementia to function, to dress, to eat, to walk.
Second, convene a federal-provincial-territorial committee to develop standards and programs of rehabilitation care, including a national strategy on dementia care.
Third, develop and implement post-secondary curriculum to educate professional health care staff and formal and informal caregivers on best practice in the day-to-day care of persons with dementia. Ideally, this curriculum would be based on the strategy, standards and practices developed by the committee, proposed earlier.
Finally, we need to fund more research focused on maintaining function and abilities for living with dementia.
Very recently, in the U.K., an extensive patient engagement process was conducted surveying people with dementia, their caregivers, health and social care practitioners providing services for people with dementia and with organizations who represent these groups.
They were asked to identify the number one health question for people with dementia. The number one problem that still needs to be solved is: What are the most effective components of care that keep a person with dementia as independent as they can be at all stages of the disease in all care settings? Our team is replicating the survey in Canada and we have no reason to believe our results will be different.
The message needs to be living as well as can be with dementia with a focus on retention and return of function. Maintaining function is key to successful aging and quality of life. Thank you.
The Chair: Thank you very much. I will now turn to Dr. Reichman, President and Chief Executive Officer of Baycrest Health Sciences, here on behalf of HealthCareCAN.
Dr. William E. Reichman, President and Chief Executive Officer, Baycrest Health Sciences, HealthCareCAN: Thank you and good afternoon.
I want to thank the Standing Senate Committee on Social Affairs, Science and Technology for the opportunity to speak today and for your leadership in studying the critical public health challenge of dementia.
I am here on behalf of HealthCareCAN, the national voice of health care organizations and hospitals across Canada. We are committed to improving the health of Canadians through an evidence-based and innovative health care system. As an organization, we continue to call for a Canadian dementia strategy and action plan.
My comments today derive from my professional and personal family experiences contending with dementia. I am a practicing physician with nearly 30 years of specialization in the care of patients afflicted with Alzheimer's disease and related causes of dementia. My prior research focused on Alzheimer's drug development and the effectiveness of dementia care approaches in institutionalized settings.
Both of my grandparents, who supported my education after the death of my father, were affected by Alzheimer's disease, and I was their primary caregiver.
I am presently a Professor of Psychiatry in the Faculty of Medicine at the University of Toronto, and since 2008 I have been President and CEO of Baycrest Health Sciences in Toronto, a global leader in seniors' residential living, health care, neuroscience research and education. Nearly all of our clients are afflicted with multiple chronic, physical disorders and brain diseases such as Alzheimer's and stroke. We are home to the Rotman Research Institute, recently ranked number one in the world in the impact of our science on today's understanding of human memory and aging.
Our organization also leads the Canadian Centre for Aging and Brain Health Innovation, a solution accelerator designed to improve health care outcomes and drive economic benefit by fostering collaborations between global innovators and leading seniors' care organizations. This $123.5 million five-year investment is generally supported by $42 million in funding from the Public Health Agency of Canada.
This committee has heard from various pre-eminent organizations and individuals who have provided expert advice for helping you best understand the local, national and global challenges of dementia. You are no doubt familiar with the anticipated socio-economic costs associated with this syndrome. I join these organizations in calling for the Government of Canada to adopt a Canadian dementia strategy and action plan and will now offer practical solutions resting upon five pillars.
Pillar one: Health promotion. Let's raise public awareness for maintaining brain health at each developmental stage throughout the lifespan.
Good perinatal care, enriched preschool and early educational efforts enhance brain development in children, adolescents and young adults. Encouraging physical fitness and healthy eating from early childhood through young adulthood also supports healthy brain maturation and builds cognitive reserve.
In mid-life, exercising regularly, controlling cardiovascular risk factors, limiting caloric intake, engaging in challenging occupational tasks, and managing stress effectively all help maintain brain health.
In later life, pursuing stimulating and novel recreational activities, socialization, physical activity and avoiding high saturated fat diets all support healthy cognitive and emotional aging. Critically, avoiding concussive head injuries throughout life is very important in reducing the risk of late-life dementia.
Pillar number two: Early detection and intervention. Let's raise public awareness of the early signs and symptoms of dementia and set public targets for early diagnosis. Early identification and intervention with individuals experiencing cognitive decline is essential to preventing many avoidable consequences, including poor compliance with medical recommendations, flawed financial decision-making, increased vulnerability and exploitation, and safety risks such as unsafe driving practices.
Pillar three: Family caregiver support. Let's ensure that caregivers across the nation have timely access to information, effective care management and respite care services.
Practical information leads to better understanding for caregivers. As a result, they experience a greater sense of empowerment and confidence with lowered anxiety and depression. In many jurisdictions, adults with dementia and their families must navigate through numerous medical providers, numerous social service agencies, legal services, financial services, myriad transportation services, and home care. It can all become quite overwhelming to coordinate.
Having access to a single dementia care manager or coordinator helps families realize the most cost effective use of support and health care services, while minimizing the social and financial risks associated with dementia.
Families must also have access to affordable, in-home personal care assistance. Many also benefit substantially from affordable access to respite care services during the day, such as dementia daycare as well as periodic overnight respite residential care.
Pillar four: Training. Let's equip professional health care providers with the methods to accurately diagnose and care for those living with dementia. There's a need to support enhanced training and the use of evidence-based tools by professionals involved in the care of individuals with dementia. Settings where this need appears greatest include primary care, long-term care, retirement homes, and community-based home health care. Some of the greatest challenges involve preventing and managing responsive behaviours associated with dementia, including resistance to care, aggression, restlessness, sleep problems, anxiety and depression.
Pillar five: Research. Let's establish dementia as a priority area for federal funding of research commensurate with our efforts to eradicate cancer and heart disease.
Like other G8 nations, Canada's research funding agencies must remain committed to supporting all aspects of scholarship related to dementia, from discovery science to advanced, systems level translational research. The future of preventative interventions and effective treatments for dementia will rely on partnerships between academia, government, philanthropy and industry.
We can seize the opportunity in this nation. Canadians have demonstrated that when action is required, this country can rise to the greatest of public health challenges. Remember, through decades-long coordinated efforts of government, academia, the life sciences and biomedical industries, we were better informed about the importance of maintaining heart health, addressing risk factors like high blood pressure, obesity and elevated cholesterol. We now appreciate the importance of staying physically active and not smoking cigarettes. In sum, we helped Canadians become "heart smart.''
We did the same with cancer. A 2015 Canadian Cancer Society report notes that since 1988 when the cancer mortality rate peaked in Canada, over 140,000 deaths have been avoided as a result of cancer prevention and control efforts. The report also praises this nation as one of the few countries in the world with a national population-based cancer registry which covers the entire population. The information gained is valuable for monitoring cancer patterns and serves as a source of data for health system planning and research.
In sum, our parents and our grandparents' feared heart disease and cancer, yet through focused public efforts and investments, we made great advances in prevention, diagnosis and treatment of these threats to our wellbeing. For our generation and for our children, we must now do the same for brain health and brain diseases like Alzheimer's. Let us now work together to adopt and implement a Canadian dementia strategy and action plan. Thank you.
Angus Campbell, Executive Director, Caregivers Nova Scotia: Good afternoon Mr. Chair and members of the committee. I am honoured that you've invited me to speak with you today. Like others who have testified before you, dementia has personally touched my life.
Caregivers play an essential role in the life of someone living with dementia, and I thank you for the opportunity to speak on their behalf.
As you have read in my written submission, Caregivers Nova Scotia is a province-wide, grassroots organization that has been supporting unpaid family and friend caregivers for two decades. We do this by providing information, support, education, and advocacy.
Our caregivers look after their loved ones with a wide range of illnesses and conditions, including dementia. Most of our caregivers are looking after seniors, and many are seniors themselves, and that often means they have their own health concerns.
The biggest challenge in caregiving is avoiding caregiver burnout, when a caregiver can no longer perform their role. That is when a care recipient will most likely need to be admitted to long-term care, and in some cases so will the caregiver, as they have become physically, emotionally and spiritually exhausted. The most common factor in caregiver burnout is stress, and the causes may be numerous and varied.
Financial challenges are the complaint we hear most often, whether due to having to quit work or retire early, or the costs of transportation, medical supplies or assistive devices. Transportation can be especially challenging for people who live in rural and remote locations.
Caregiving in the home has become more complex. Caregivers are expected to know how to perform medical procedures, as well as properly interpret and react to the challenging behaviour associated with people living with dementia. Most also need to be skilled in medication management and oral care.
Caregiving can be lonely and isolating. Many caregivers express that family and friends don't understand their situations, so caregivers are unable to talk, or they don't want to burden their families.
Consequently, self-care is extremely important for the caregiver's own health and mental wellness. Caregivers need to learn skills for coping with their situations. As explained in my written submission, Caregivers Nova Scotia offers 20 monthly in-person support group meetings as well as educational workshops such as caregiver stress management.
All of our programming is open to caregivers of all diseases, conditions and situations. In our experience, a diverse group of peers can be particularly helpful.
When caregivers are given the opportunity to change their focus away from their care recipient's disease to themselves, they can learn the importance of self-care. They are able to share their experiences with others. Caregivers Nova Scotia, Caregivers Alberta, and Family Caregivers of British Columbia are united with this philosophy.
Caregiving can be rewarding but can also be challenging and demanding. As the director of a frontline organization, my suggestions for a national strategy would include the following pragmatic recommendations.
Increase collaboration and cooperation. With provincial home care systems, caregiving organizations and Alzheimer societies working together, caregivers can be made aware more easily of who offers which services and programs.
Perform caregiver assessments. Just as a home care client is assessed, so should the caregiver be for willingness, capacity and readiness.
Offer earlier access to caregiver supports. By supporting caregivers early in their journey, they will be able to stay in their roles longer. This means that their loved ones can stay at home longer.
Recognize all populations and potentially unique programming requirements. Dementia affects all communities, including First Nation, GLBT, immigrants, and new Canadians. Linguistic and culturally appropriate resources are necessary.
Increase support for working caregivers. Great strides have recently been made as federal Employment Insurance benefits have been created and expanded, but for the most part these are targeted at caregivers providing palliative care. Governments, corporations and companies large and small need to build in flexibility to permit caregivers to stay in the workforce while looking after their loved ones.
Print handbooks and other resources. The government trend is to put resources online. It is a good idea, but it does not help people without Internet access and knowledge. Additionally, some material, such as the Caregiver Handbook from my organization, is 94 pages long and needs to be printed in a format that is usable.
Update Government of Canada websites. Add Emergency Preparedness information for caregivers and people living with dementia on the getprepared.ca website, especially given the events in Fort McMurray. On the seniors.gc.ca portal, add direct links to caregiving organizations and not just 2-1-1.
Offer innovative respite care. To have real meaning and value, respite workers and their managers should consult caregivers to ask how they can help, what tasks can they perform to truly assist the caregiver and the care recipient?
Increase the availability of affordable adult day programs, as they are a treasured form of respite.
Support existing provincial caregiving organizations with operational funding. Project funding requires individual grant applications, specialized reporting and hiring people on a temporary basis. This takes time away from doing the frontline work, where it is needed most.
Unpaid family and friend caregivers play an important role in the life of someone living with dementia. Thank you once again for giving me the opportunity to echo their concerns.
The Chair: Thank you very much, Mr. Campbell. Before I turn to my colleagues, I found your website refreshingly easy to use. It's not glossy. It's not dramatic. But every button clicked gave the information that it said it would. In my experience in searching websites, that is not always the case. It was just right there and it wasn't clouded with all kinds of extra stuff. I think you are walking the talk that you outlined in a couple of your recommendations there.
Senator Eggleton: Thank you. All three presentations are very valuable to us.
Mr. Campbell, you talk about very extensive programs for caregivers here, offering 20 monthly in-person support group meetings, workshops and stress management for example. How is all this paid for? Is it through the province?
Mr. Campbell: The Nova Scotia Department of Health and Wellness funds us annually. We are a budget line, so we do not have to apply for a grant. To my knowledge, we are the only provincial caregiving organization in Canada to receive that. It allows us to work continually without stopping. That's why I mentioned the funding. It does allow us to continue on and create new programming and reach more caregivers.
Senator Eggleton: How long have the programs been up and operating?
Mr. Campbell: We have been around for 20 years and the government started funding us in 2001.
Senator Eggleton: Is there any user pay? Do any of the caregivers pay anything? How do you qualify them? I can imagine you would be overwhelmed, particularly with the rate of aging and the rate of people becoming affected by dementia. You could be overwhelmed very easily. How do you sort that out?
Mr. Campbell: All of our programs and services are free. If someone calls us or reaches out to us, we ask them some questions. We have a flyer we put out at health fairs. It asks if you are an unpaid caregiver. There are five different questions, and if they check off even one, then they are a caregiver. Whether they are making medical appointments, taking people there or picking up prescriptions, they are part of their care. If they were not there, the care recipient could not do it on their own.
Senator Eggleton: Dr. Reichman, you mention a dementia care manager or coordinator. The informal or formal care is very broad in their application. There are so many different ways to assist people, so the idea of a coordinator or manager is a good idea. Is this functioning anywhere now? Are there sufficient professional qualifications for such people?
Dr. Reichman: There are different variations on the theme, and the variation is largely in the comprehensiveness of the care coordination. In Ontario, my experience is that the CCACs which are slated to provide care coordination are largely very transaction-oriented, so your mother could benefit from three hours a week of home health care, we will arrange that for you. While that helps families, their needs are dynamic and they change.
They would benefit from a care coordinator. That is, a holistic, comprehensive understanding of the needs of a particular family and the person being cared for, not only to help them navigate and coordinate through what still remains of a fragmented system of care, but also help them to attend to other collateral impacts like financial decision- making, whether someone can safely operate a motor vehicle, where they can engage in enriching social and recreational activities, supporting the caregiver's emotional needs.
Over the years that I have been caring for patients with Alzheimer's and related problems, after mom has been placed in long-term care or perhaps dad has passed away and this comes to my attention, the families will thank me for everything I have done. Earlier in my career, I used to wonder, what did I actually do? These were terminal, progressive illnesses. The person died from it. What did I actually contribute? Now that I'm an older doctor, I have come to recognize that being there for them as an anchor, helping them to navigate, being available when they are stressed and uncertain and vulnerable has been way more a benefit to my patients and their families than any prescription I have written in 30 years. That's what I have come to understand, but it does not need to be a physician to do that. That's the point I'm trying to make.
Senator Eggleton: Dr. McGilton, the lack of access to rehabilitation, hospitals nursing retirement homes in the community for persons with dementia, what would you specifically recommend in that regard? I suppose you said something later but I didn't quite follow it all.
Ms. McGilton: What I'm recommending is that if a person has had a broken hip or actually enters the acute care system, once they actually go home, if they are going straight home, there is some sort of reablement that happens at the home so there is follow-up service.
What ends up happening often when persons with dementia have a reason to go into acute environments, they became disabled beyond the disease. So we need to help the person back to where they were prior to the incident. So perhaps providing homecare based on goals and targets we would set for them, some time-limited interventions to make sure they can be re-enabled to have independence and get back to doing things on their own. The same goes for acute care situations and trying to get into a rehab bed. Beds are very limited, so perhaps creating more environments where there is better access to an active rehab facility.
Senator Eggleton: You said that long-term care facilities are not giving this kind of rehab.
Ms. McGilton: Absolutely, this is the next problem.
Senator Eggleton: Of course you want to get them out of acute care facilities, so it's either home or long term. You say better chances of rehab services at home —
Ms. McGilton: No, I'm sorry. At this point, there is really very little at home. Actually that's the problem. For example, my mother has dementia, and she is in a retirement home and has fallen twice. I phoned CCAC and asked what they had for her in terms of services. They said nothing, not until she fractures her hip. We see decline happening, but there are actually no services for prevention.
What happens in acute care, if you have had a critical incident, there are very few rehab beds available for you to gain access and get back to your current state of function.
Senator Stewart Olsen: Very interesting, thank you all for your presentations.
Dr. McGilton, when you discuss rehab, what exactly do you mean? I'm not talking about people who fractured a hip or whatever. I'm not sure if you mean people can be retaught which is very hopeful if that's the case.
Ms. McGilton: There is cognitive rehab where people are trying to be retaught for those with mild to moderate dementia. They are trying to teach the patient how to remember people's names, where your keys are, for example. There are strategies that have proven successful.
As they go further along in dementia, it becomes more taxing. At the same time, there are also physical rehab programs to help them. More importantly, it is trying to get a sense of the remaining abilities the person has and making sure we enhance those, versus decompensating so they are not able to do things independently anymore.
I will give an example of what happens often in homes. People are in their home and they might have difficulty eating, so the caregiver might try to feed the person. There is actually a lot of cuing and prompting we can do so the person can maintain independence with eating, but that knowledge is not readily available to caregivers. Similar situations happen in nursing homes. It's easier and quicker to feed somebody who is struggling than to teach them how to reuse a fork or spoon or actually give them finger foods.
There are strategies we use to maintain their abilities and develop a program of care to keep them as long as we can within their maximum state of independence. Does that help? It is much broader. The think tank I attended in Denmark is looking at reablement, which is the notion of looking at how to enable people to get to where they should be following a setback.
Senator Stewart Olsen: I have been very interested in what Denmark is doing, but that's probably one of the most positive things we've heard so far. I'm very glad that you had time to come and speak with us.
Mr. Campbell, you talk about monthly, in-person support group meetings. Do you bring experts in? How are those handled?
Mr. Campbell: Thank you. Each one of them is different. We offer seven in the Halifax area and 13 elsewhere in the province. Each group is unique and autonomous. There is one particular group, they like to have a special speaker, occupational therapist, physiotherapist, someone from continuing care. They have someone come in every few months.
The other end of the scale is a few groups who only have two hours for a support group. They want to deal with their own concerns. They will attend special events if they want to find additional information.
Senator Stewart Olsen: Thank you. Dr. Reichman, you discuss the fear. Patients who are diagnosed early with dementia or Alzheimer's have a large fear. They live in a state of fear from that diagnosis, or even before they are diagnosed and they have an idea. If we had ways to reassure them that things can be done, it doesn't have to be this steep slide down, and there was some kind of stability to offer, I think that might help. Can you comment?
Dr. Reichman: I fully agree with the premise of your question. First of all, the course of dementia, like Alzheimer's disease, is highly variable. Some patients can have a very slow deterioration over a decade or more. They can continue to engage in activities that give them a sense of pleasure and meaning for many years, whether socializing with family and friends or engaging in enjoyable activities. They can do all of those things.
I encourage my patients and families to think of dementia as largely a chronic illness. It will flare, and we will manage the flare-ups as we need to, but it does not need to be seen as a death sentence. We will manage it as we need to over time. I find that reassures families when they hear you can still be yourself and still do so many of the things that are important to you. That hopefulness message I do reiterate quite a bit. I tell them to engage in the things that science tells us will continue to protect their brains like physical exercise, good nutrition, staying stimulated, managing stress and getting a good night's sleep, et cetera. These are all things under their control.
Senator Stewart Olsen: Thank you.
Senator Seidman: Thank you for your presentations. All of you talked about the importance of respite care. We've heard a lot of recommendations about a national dementia strategy. Are the requirements of respite care different for dementia than they might be for other diseases? If so, what would you recommend the federal government do for assuming some role in the respite care component? I leave that for any or all of you to respond.
Mr. Campbell: Specifically, I believe that respite must be innovative and really answer the needs of what the caregiver and care recipient are looking for, then it does have its value. That can be how long it's to be and how often it's to be. Many of the home care companies, they want to do things in four-hour or eight-hour blocks because it's easier for scheduling, but that might not be convenient for the family.
When it comes to respite for someone with dementia, well, whoever is providing that respite care needs to be trained and trained well. One of the complaints we've heard from a number of caregivers, is that the person who is coming in does not have the full skill set.
Now, I know in Nova Scotia there is now a whole new course on Alzheimer's and other dementia care for the continuing care assistant program. LPNs or anyone else can take this program. It's sort of additional certification. Suggestions have been made about having health care professionals specially trained. We also need the other health care providers.
Dr. Reichman: I would agree with much of what Mr. Campbell said. What can the federal government do about this? That is a broader question in terms of what should the federal government be doing about all of this? What I would hope for, at a minimum, is that we agree to establish standards. Across the nation, we will expect that from the most local jurisdiction up to the level of provincial health care planning, that respite services will be made available to all communities, and establish that as a standard that we hold ourselves accountable to meet. I do think families benefit substantially from respite in a variety of different forms and degrees. It is a critical enabler of caregivers fulfilling their roles without being prematurely burnt out.
Ms. McGilton: My comment is about continuity. Persons with dementia often don't want a stranger in their home. That's a huge problem. If you can build a relationship with whoever is in this respite role, you have won. If you can get someone who comes in on a constant basis, that is important for the group of clients because there is a likelihood you will let them come back into your house if you have a rapport. That is the requisite relational skill we don't talk about. How do you relate to someone with dementia? These are unwritten rules. This is where we have to bring best care practices into everyone's hands. Once you develop a rapport, you will be able to leave and the caregiver will not be worried the whole time they are away, which defeats the whole purpose of respite. Continuity is the key.
Senator Seidman: Dr. Reichman you have expressed it best. Health care is a provincial matter. We all understand the jurisdictional issues. On a national level, you mentioned standards. Respite care is provided by professionals who have professional associations I would presume. Do they provide standards? Is there a repository of standards now for respite care?
Dr. Reichman: No, there is not. There are different kinds of respite care. We have been talking about in-home care. Someone comes into the home and stays with your mother throughout the night or through the next four days so you can go see your grandchild. Then there are respite services with existing congregate care settings.
For example, in our retirement home at Baycrest, families will sometimes have loved ones come in for a respite stay for two days or two weeks while the family attends to other critical needs. What sometimes happens, because of the derived benefits of being with other people and having more activity, they choose to have mom stay there indefinitely. That becomes her new home.
The question of what the federal government should or should not do vis-à-vis the provinces also begs the question of funding transfers to the provinces. What are the accountabilities that should go along with that transfer? Should there be standards like childhood immunization rates or avoidable emergency department visits? Whatever it is, I am a believer in setting accountabilities, but not solely from the perspective of sticks. Provide base funding, and then if provinces can show improvement in certain areas, then they receive an incentive payment on top of that. It's not all losing if I don't perform; it's more gaining something if I do perform.
Senator Seidman: Are there examples of other countries you could put forward that have approached these issues in a manner that we might look to as a model?
Dr. Reichman: With regard to the Centers for Medicare and Medicaid services in the United States, they now have built into the Medicare reimbursement system a series of rewards, particularly in acute care sectors and now extending into primary care for hitting certain achievable targets, whether on a population basis, improving immunization rates, or it's avoiding hospital readmissions or medical complications within the hospital. They have developed reimbursement methodologies that reward exceptional performance.
Senator Merchant: Thank you. This is very interesting. It is very helpful that you offer solutions we can use right now. In everything that you have said is something that we can do today.
We have known about dementia and Alzheimer's that as people age and because we live longer because of all the other breakthroughs we have had in health that this is going to be a problem. I thank you very much for giving us concrete, specific information.
I'll start with Dr. Reichman because you have been in this business. You described yourself as an older doctor. Breakthroughs in big science take a long time, and we don't maybe have as long as we think we have.
In your type of practice and work with patients, has there been a big breakthrough that you have found?
Dr. Reichman: I think the reality is that we have not, over the last 35 years of substantial investment, come up with a truly meaningful therapy for Alzheimer's disease. That's the sobering reality.
However, what we are starting to understand is that one of the reasons that might be the case is because we've been intervening way too late in the disease process. It would be as if you're trying to improve population cardiovascular health but only develop drugs for 85-year-olds with advanced congestive heart failure. That would never improve population heart health; it's likely not going to improve population brain health.
What we're starting to see now is much more of an effort on prevention. The evidence is accumulating now that age- specific incidence of dementia is actually going down. The reason for that is likely because of better management of cardiovascular risk factors, which are important for the brain, as well as higher educational levels across populations, and better nutrition and more physical activity.
What we're seeing now is we can intervene in earlier life to try to delay the onset of dementia. That's where the bulk of the research activity is leading us now in terms of advances.
Senator Merchant: Has there been any advancement with pharmaceutical medications? Have they got a pill or something that helps? I know some people who are in clinical trials in Canada, and I don't know what the progress has been, the success.
Dr. Reichman: The reality, senator, I'm sorry to tell you, is that 99.7 per cent of the pivotal clinical trials to demonstrate the effectiveness of Alzheimer's drugs have failed — 99.7 per cent.
There are a variety of reasons for that. Probably the main reason is that we are intervening too late in the disease process. The treatment of Alzheimer's disease for decades we've conceived of is a treatment of grandparents, of 75- or 80-year-olds. The future treatment of Alzheimer's disease is going to be in people in mid-life. That's what I believe. Like heart disease, that's where the pathology starts, but the symptoms may not become evident for decades later. The treatment will be in people my age, perhaps even younger.
Those studies are being done right now. There's a whole variety of different approaches being taken right now, but I believe that for now what we should be doing is focusing on prevention and helping people to understand how they can maintain good brain health throughout the lifespan, without relying overly on a magic pill or a cocktail of pills that are going to save all of us baby boomers.
Senator Merchant: Mr. Campbell, I congratulate you, in Nova Scotia, for being so far ahead. You mentioned Alberta and was it British Columbia?
Mr. Campbell: Yes.
Senator Merchant: What is happening with the other provinces? Are they coming to you, and do you go to them? Do you have seminars that you hold across the country, where you invite people from Saskatchewan or Manitoba, the other provinces, to come and see how you operate?
Mr. Campbell: We haven't so far. We have gotten together a couple times with the Canadian Caregiver Coalition when there was some project work being done in the last two years, and various stakeholders were brought together. There are really only three province-wide caregiving organizations. As well, there's a caregiver network in Manitoba. There was, through the Department of Seniors in Newfoundland, Caregivers Out of Isolation Newfoundland and Labrador. But given their recent budget cuts, that position is now gone, so there's nobody offering those services.
There are no caregiving organizations in P.E.I. or New Brunswick, to my knowledge, unless they are very small and are only serving a small community like a town. We have not been able to find any.
With health being provincial, everybody works off different models. I'm not saying that our model would necessarily work everywhere, but it sure is working for us.
Senator Raine: Thank you very much. We really appreciate your being here.
I have a question for Dr. Reichman.
The Baycrest facility, Baycrest Centre — I'm looking at your notes — it's more than a one-to-one staff-to-patient ratio. It's a very big organization; it has all different levels.
How does that work? How do you sign up to get in there? Seriously, obviously what you're doing is very good, but it is still located in just one place. Is it transportable? Is it exportable to other urban centres?
Dr. Reichman: First of all, I wish we had one-to-one staffing for all of our residents.
Senator Raine: I've seen 1,500 people and 1,800 staff, 2,000 volunteers, 1,500 students.
Dr. Reichman: It's a lot. We are a comparatively well-endowed organization; there's no doubt about that. We can't expect every senior care organization to have the kinds of resources that we have, any more than we would expect that every organization that takes care of children is SickKids.
As proud as I am of Baycrest attributes and what we've accomplished, there are many very fine senior care organizations across this nation, and Canada has already demonstrated an affinity for good care of older people. The question is how can we make it better, and how can we be seen as global leaders in what probably is one of the greatest demographic challenges we've ever faced as a species?
I think we can do more. While we like to cite Denmark and, perhaps in terms of care management, Scotland as an example, I do believe that this country is very well positioned to innovate and to introduce new ways of caring for people that committees like this in Denmark and Scotland are going to cite. But it takes will, collaboration and accountability.
Senator Raine: Just following up on that, because we have health care delivery at the provincial level, there is an ability to do different things in different ways in different parts of the country. But I guess a national strategy would be to pull all of that information together and make sure that people are nimble to adjust to what is the best. Is that what the three of you would be looking for in a national strategy?
Ms. McGilton: Absolutely. You would want to bring people together that have stellar programs and talk about them. So you are bringing together administrators, researchers, people who have lived the experiences and who said, "This program was amazing.'' You want to bring the best together to say: What are you doing that's so wonderful in your neck of the woods that we don't have in Ontario? That would be a fabulous way to do it, to bring an integrated program together; you have experts and we can all learn best practices from one another.
Mr. Campbell: I would add that we do have a lot of really good services out there, but sometimes it's the left-hand/ right-hand thing that we don't always realize who is doing what. That's why I think we really need to pull everyone together and clearly define: You do these programs and services; we'll do these. When someone is coming into the continuing care system with a diagnosis of dementia, start connecting them with the right services then. As their disease progresses, or if dementia is diagnosed, then we know how we can connect them with Alzheimer's societies, et cetera, so that there can be more. This is where we need to work together and not in silos.
Dr. Reichman: The emphasis needs to be on the desired outcome. How we cost effectively get there doesn't really matter. What might work in New Brunswick may not work so well in urban Toronto. But if we can achieve the same cost-effective outcome, we've achieved a success.
I think that being clear on what the desired outcomes are is what's really most important.
The Chair: Ms. McGilton, you mentioned one thing that hasn't been stated to our committee to this point which I think is important, and yet it seems so simple in its own concept, and that is consistency in the helper.
I've seen so many cases where the elderly person is actually traumatized by a new person coming in unexpectedly, and they're dealing with very personal issues in a very fragile state of mind and social involvement. That was a tremendously important observation.
The other is the issue of following up on serious injury, rehabilitation. It doesn't matter what age you're at, you've got to get moving and get active and it negatively impacts all of your capabilities if you don't get that.
Here we have people who are most vulnerable, who are, as you've indicated, not getting it at all in certain circumstances. That's really a very unfortunate thing.
I also want to comment, Dr. Reichman, you've said several times a single word that is the unique issue in our entire health care system that does not exist, and that's accountability. It's not just in this area.
The nature of a federal system with all these autonomous entities fighting for their own turf and not allowing any organization, namely, the federal organization, to put any accountability on funding transfers and to the provinces has been a major issue, and we've looked at that in other studies that we've done. I wanted to note that.
Dr. Reichman, the cohort we're looking at as they increase in age often has co-morbidities such as Parkinson's, MS and other issues. We are looking at recommending a national strategy to deal with dementia. Other than the specific medical treatment of those different disease symptoms, is the care required for individuals that develop more than the dementia and have one or more of the others, is it dramatically changed in the type of caregiver that needs to deal with the day-to-day concerns of the individual?
Dr. Reichman: It has. If you just look at the sheer number of medications that these patients are on and the complexity of the dosing regimens that doctors too often expect families to become compliant with, it's really overwhelming, as we've gotten more successful in developing new drugs for an 80-year-old who has arthritis, hypertension and all of these things.
The Chair: The management of the prescriptions would be one clear issue that changes with co-morbidities. What about the other general daily care?
Dr. Reichman: It makes it harder to get the patient out of the house to see myriad specialists, to get the patient to dementia daycare, to take the patient out for a recreational event, when the dementia is complicated by both musculoskeletal problems, cardiovascular fitness issues. The ability of the person with dementia to engage in all of those activities that give us a sense of meaning is compromised. And the more medical co-morbidities that add up, the more challenging and difficult it is.
Ms. McGilton: I want to add a point. What's happened in the multi-morbidity literature is we've excluded older adults in most of the work we have done. The 85 are usually excluded, with dementia you are excluded, so we don't have a lot of research evidence to back this up.
It's also a new phenomenon. Before it used to be dementia, but now you're going to have co-morbidities, like you said, because people are living longer. We don't have good evidence, but we do know that treating a disease, a diagnosis one at a time isn't working either. We're looking at symptom control. We have to get on top of the pain and the fatigue and deal with symptoms in a much more multidisciplinary approach, versus the doctor going to the cardiovascular surgeon and then somebody takes care of your liver, et cetera. We have to look at how to care for this population differently.
The Chair: That's right. We did a study on obesity, and that same issue of the individual arose. I've said our other studies, if our automobiles got treated, when there's a problem, the same way that we get treated when we have more than one issue, we'd go to a different provider very quickly. We don't have that option here, and the shuffling around of people within the system is serious.
I wanted to get those answers on the record. We can only deal with those things that are presented to us during the studies. You've given me the answers that I was looking for on that specific issue. Thank you.
I want to come to the overriding issue, and that is the concept of a national strategy. Governments may be good at developing, conceptually, national approaches to issues, but actually managing them is quite a different thing, especially where it enters the health issue which crosses all the jurisdictions; they have had great difficulty dealing with that.
We have to approach it slightly differently if we're going to have a national strategy, and a national strategy automatically implicates the national government in it, if no more than funding, which, of course, is a critical issue, but it should link as well with the accountability issue that Dr. Reichman has emphasized.
I don't want to spend half an hour on each answer here, so you may want to get back to us. What kind of a vehicle would you see delivering a national strategy on behalf of the people of Canada, which means through federal government involvement in some way?
To give an example, we have a national Alzheimer Society organization which also has provincial wings, an organization that might have the capability of operating nationally and regionally but could also interface with the federal government to develop a strategy but administer the strategy and make it effective administratively and be able to avoid the political issues that we get into when the federal government and the provinces attempt to develop a strategy.
Do you have a quick example, and if not, would you be willing to take it away and get back to us through the clerk?
Dr. Reichman: We can learn from the examples of Western Europe, where a number of nations have successfully implemented a national strategy. That doesn't address the fundamental concern of the appropriate role of the federal versus the provincial government, where that's our particular burden to have to sort through.
In the implementation, it will involve a coordinated effort between advocacy organizations like the Alzheimer Society of Canada and then its local jurisdictions, as well as the funding agencies at the provincial level and, here in Ontario, the LHIN level, the provider organizations, et cetera. So the implementation will require the activity of several different kinds of stakeholders.
Where I think the federal government has the clearest role to play is on behalf of the population of the nation — and I know I'm being repetitive — to establish standards. This is what we believe every Canadian is entitled to who is suffering from dementia. It doesn't matter to us where they live; it just matters to us that wherever they live, those standards are met. We will ensure that through the funding mechanism, which is where you have the most leverage, you can hold us accountable.
The Chair: I wish that were so. History doesn't suggest that.
Mr. Campbell: I would prefer to get back to you on this because I have looked at a number of dementia strategies, and I was involved also with the one that we've recently done in Nova Scotia. There's something to be learned from each of them.
The Chair: Thank you.
Ms. McGilton: I would also like to get back to you. The importance of setting standards and practices to go with guidelines would be essential at this committee level.
The Chair: Thank you very much. I'm delighted with your response there.
Dr. Reichman, the issue that we have seen in actual practice in terms of federal transfers and the education system is there has been absolute resistance to any accountability directly, but your point, nevertheless, is extremely valid. We won't pursue it further here today, but it is an extremely critical point.
I'm now going to turn to the second round.
Senator Eggleton: I want to pick up on the question of accountability. It reminds me of the health accord. And there were a lot of issues involved there in terms of accountability.
The new government is talking about a new health accord. As you may recall from the last one, there were limited areas and some prime areas of concern for illness. Should dementia be added to that? Should it become a key factor in the next health accord?
Dr. Reichman: I believe the epidemiological data is so compelling that this will become one of the great public health challenges of our time. Yes, it should be.
Senator Eggleton: You had suggested previously, in terms of holding the provinces to account for improving things and transfer of dollars because the original health accord was based on that.
Dr. Reichman: As a health care provider in Ontario, we are held accountable to deliver on the funding that we receive.
In this circumstance, what I would suggest is that the accountability gets executed by rewarding improved performance in those areas that we think are most critical to the public health, where the visceral resistances to accountability tied to funding is when it appears that we can only lose, we can't win.
The Chair: So the baseline is across the board and from there you get your increases based on proven success?
Dr. Reichman: That's my point.
Senator Eggleton: The chair mentioned the Canadian Alzheimer Society. They did propose a couple of years ago a Canadian Alzheimer's disease and dementia partnership, and I don't know if you're familiar with this. They actually suggested that they might help lead all of the different stakeholders, different players if the government wasn't going to do it more directly. You're not familiar with that. That's fine.
Let me ask about one other entity in the federal sphere because we're now focusing not just on the strategy. Everybody has called for the strategy and we are inclined to do that, but it's the action that flows from the strategy that we're now focusing on.
What about the Public Health Agency of Canada, what should their role be in all of this?
Dr. Reichman: As we have successfully done in this country around heart health and cancer, we can do the same around brain health. I don't think that most people across this nation appreciate that there are things we can do throughout life to keep our brains healthy.
We do understand that a bit with regard to heart and cancer, but I don't think we have that understanding about brain. I think the Public Health Agency of Canada, perhaps with the Alzheimer Society of Canada and any other appropriate stakeholders, could launch a nationwide health promotion campaign around brain health. We've done it successfully before in heart and cancer; we should be able to do it for brain.
Senator Eggleton: Let me slip in one more question. This is a specific program, and you mentioned it, Mr. Campbell, the Employment Insurance benefits, the EI program which has this temporary work stoppage to provide care for support to a family member, but that has the condition that the person be gravely ill, a significant risk of death in 26 weeks, so it's very limiting to an end-of-life care, a palliative kind of situation.
Should the federal government expand the Employment Insurance program? This can, of course, be quite an expensive endeavour, but going beyond where it is now to deal with informal caregiving people needing respite care.
Mr. Campbell: They have recently, not too long ago, expanded the program. It's been well received. The people that we know that are using it are quite pleased with it, and they feel that that financial support is helping them, especially when it's such an emotionally difficult time.
Whether the federal government increases an EI benefit or comes out with a new EI benefit or program, I can't say for certain whether that would be the right thing to do, but we definitely need flexibility.
On my flight here today, I sat next to a woman who was from Newfoundland who lives here. She was just coming home from burying her mother. Her mother actually had died here in Ottawa, where she received phenomenal treatment from cancer.
She said that the home support was good, the hospice was good, they were coming and picking her up and taking her to the hospice for a few hours a day, so she was getting respite that way, et cetera. I said, "How are you coping with all of this?'' She said, "I never could have done it if my employer had not permitted me to work from home.''
So that's a fine example of flexibility. There's no loss for the employer, there's just flexibility as to where she works.
At our organization we need to be a leader in this, and we have changed our sick leave time to personal leave. So if somebody needs to perform a caregiving task, like take somebody to a doctor's appointment and they need a few hours in the morning to do that, they can easily let me know ahead of time. We take a couple of hours off their personal time, because we no longer record in days, we record it in hours to make it easy for everybody.
At the end of that, if they run out of that time, then we take a look to see, okay, if you need a few more weeks, can we do that. We need to be flexible with them and to each individual situation.
Senator Eggleton: Are you encouraging companies, corporations in Nova Scotia to do something similar to what you're doing?
Mr. Campbell: I plan to. It's on my to-do list.
Senator Eggleton: Whether it's in the EI program or the federal government or companies giving time off, that's the word, "flexibility''?
Mr. Campbell: Yes, and work locations, especially given technology that's a fairly easy thing to do.
The Chair: Following up on the senator's questions with regard to gaining access to information and the general area of neurological diseases, if you were to think about the average person going to a website to try to get information on dementia, do you think that neurological problems would be the thing they would tend to look for, or would an actual dementia bulletin be far superior in terms of the public quickly finding information on the issue they think they're dealing with?
Dr. Reichman: I can tell you from our experience with no media attention whatsoever, no marketing, we launched a website with a platform for people to be able to answer the question: Is my memory normal or should I see my doctor? With no publicity whatsoever, we launched this website. And there was one story in the National Post about this and within a couple of weeks we had 80,000 Canadians go to this website. Almost half of the Canadians who went to this website sat on the website for 15 minutes and completed this task. We now have data on over 100,000 Canadians, and we have not promoted the website.
So I think there is enormous hunger out there, particularly among middle-aged people, as to, "Should I be concerned about this forgetfulness? My mother and grandfather had Alzheimer's disease; what do I make of this?''
More and more I am seeing in my clinic people my age coming in, perhaps a bit older, and they want to know what is normal for their age and what might be the early signs of Alzheimer's disease. "Do I already have Alzheimer's disease? Oh my goodness, what can I do about this?'' I think there is great public hunger for this and we need to provide them with the tools to be able to answer those kinds of questions.
The Chair: You're absolutely right. That was the base of my question. There is enormous public hunger for the information. The reason I'm asking you is because on PHAC's website, there is no direct mention of dementia. It's neurological illness and so on. Quite frankly, that does not lead me instantly to the very issue you gave as an example. I don't want to pursue that any further.
Senator Seidman: I want to pursue this somewhat. Once again, any of you might respond.
I'm interested in whether your research or advocacy in the dementia area has resulted in policy changes provincially and nationally. And if so, what would the research or advocacy have been and what would the policy changes have been?
Ms. McGilton: I could speak to that. I was a career scientist for the Ministry of Health in Ontario when they had the program. One thing you had to do was pay back, so I had to go into the ministry and work on a project that was aligned to my work. In fact, I was there when they were working on the long-term care regulations. It was fascinating for me to be involved in determining the best evidence we can bring to bear for the regulations so we could make sure they were as good as could be.
What ended up happening — I heard Bill mention this. The term "responsive behaviours'' was not in the regulations at that point. We called them "challenging behaviours.'' We often talk about challenging behaviours when referring to people with dementia. I've read work from Sherry Dupuis, and I said, "She is calling them responsive behaviours.'' There's a philosophical difference. If you say somebody with dementia is exhibiting "responsive behaviours'' versus "challenging behaviours'' — the lawyer asked me, "Is this the flavour of the month, Kathy?'' I said, "It's the flavour of the future.''
If we actually educate people that dementia patients have anxiety, aggression and agitation for a reason, maybe it will encourage us to educate professionals so they know what is going on, versus assuming they are being challenging and then we sedate them, which is our common practice. It's quite fascinating to be able to do influence policy.
They changed the regulations. Every instance of the term "challenging behaviours'' was replaced with "responsive behaviours.'' I think we made quite a change.
The other thing I was able to do, because we were rehabilitating people with dementia, we were able to replicate that model of care at different sites in Ontario. We have had interest across different provinces to look at this. There is work being done on recognizing that a population deserves a chance, so how do we replicate it in other provinces? There are examples of making changes in policy and practice.
Senator Seidman: That was very helpful. Thank you.
Dr. Reichman: Those are very good examples. There is no doubt that the recent scholarship has impacted the regulatory framework, and you mentioned some examples of that. The other is the use of anti-psychotic drugs in people with dementia where this is a very rigorously applied standard now within at least the Ontario framework for long-term care. These drugs can cause injury and they are not always thoughtfully prescribed and are likely being overprescribed across the nation.
The other is in the use of physical restraints. For many years, people with dementia that showed responsive behaviours were given a variety of physical restraints. What the scholarship showed us was that physically restraining actually leads to more injury than not restraining, so that has now become an important part of the regulatory framework as well.
Senator Seidman: Interesting, thank you. Mr. Campbell?
Mr. Campbell: Perhaps I'll speak to advocacy.
Senator Seidman: I was hoping you would.
Mr. Campbell: Although I could talk to some of the research. I did use the term "challenging.'' I thought that it might be better understood here. I hope I can say that.
Part of advocacy for caregivers — and I'm being very serious when I say this. So often today we hear the term "informal caregiver.'' I have to tell you that caregivers dislike that term intensely. I know it comes from academia and it's not meant as an insult. It's because they are informally trained as opposed to someone who is formally trained, such as in a hospital.
One of the things we're trying to do in Nova Scotia, and we have been successful with the dementia strategy, is we took out the term "informal caregiver.''
Another trend we're seeing is "care partner.'' What it leaves caregivers with is, "What the heck is that? What is a care partner?'' When we've been at conventions and the like, we've heard nurses say, "We thought we were the care partners.'' Well, yes, but what we say is we're all "partners in care.''
I like to explain it to people as the dyad of the care recipient and the caregiver. There are two people who make up that one unit; we wouldn't have one without the other. Then we have the partners in care around them, which would be the physician, the nurses and the other health care providers. This is what forms that partnership.
I think we need to be really sensitive with language. Yes, we say "unpaid family and friend caregiver.'' We include the word "friend'' because 16 per cent of caregivers are not related by blood or marriage. We must recognize them.
Ms. McGilton: I'm guilty of the formal and informal. My apologies. I want to talk about the formal, because as far as advocacy goes, we have forgotten the health care force that cares for this vulnerable group. How do we make sure they are trained but also that they are supported in their daily lives, especially in long-term care facilities?
What I'm trying to do internationally by working with other researchers is to look at the role of professional nurses in those environments, what is happening, and making sure we advocate for the healthy workforce, especially in nursing homes where staff are caring for complex clients. It will only get more challenging. How do we do this well? I think that's a whole other issue that we really need to mention today and that has been forgotten. We are having a hard time retaining staff in some of our environments, so we have to be careful in the future because these groups will be more difficult and challenging. I'm not sure who will be there to care for them.
Senator Seidman: It's interesting because you're expressing your hopes for policy changes in the future, correct?
Ms. McGilton: Absolutely, yes.
Senator Seidman: Dr. Reichman, I wonder if you might have a hope for policy change in the future that you might put out there. You've talked about the research impact on some policies. Are you hoping for anything in the future either in advocacy or in the fruits of research?
Dr. Reichman: I think one thing that probably keeps both Kathy and me up at night — and perhaps you as well in regard to caregiver needs — is will we have an adequate workforce? We are not seeing young nursing, medical and physiotherapy students wanting to go into this field. They are not coming to our kinds of organizations to work. They are not going to home care organizations. They are going to acute care hospitals or perhaps primary care practices and we are concerned about that.
I think what we need to do is excite young people in this field when they are most malleable, early on in their training, and expose them to the rewards. We wouldn't be doing this unless we found the work rewarding, and it can be very rewarding.
I think we need much more curriculum development and exposure of young people to this work, because we are going to be dependent upon them to care for us.
Senator Seidman: Thank you very much.
The Chair: I want to ask you, Dr. Reichman, a question with regard to polypharmacy. You touched on it earlier, specifically around the question of co-morbidity. We know from the evidence that seniors tend to be overmedicated in general, with multiple prescriptions. In your organization, where you have these various centres, how do you manage the prescription aspect? Is there a person in charge of prescriptions in a given institution that looks at contraindications and other kinds of issues?
Dr. Reichman: It depends on the setting of care. In long-term care you will have a pharmacist that can look at the medication list and identify potential risks as a result of multiple medications that might cause harm.
Aside from institutional settings, one of the reasons seniors are on too many medications is that they are seeing too many doctors. Dr. Smith has no idea what Dr. Jones is doing, and then there is a third consultant brought in and nobody is coordinating this care.
This was supposed to be role of the specialist geriatrician, but they are in short supply and that supply is dwindling. We are seeing the same trend in people wanting to go into geriatric medicine that we're seeing in every other discipline and we haven't yet figured out, as educators, how we're going to turn that tide. In places like Baycrest or where Kathy works, at Toronto Rehab, the doctors are already knowledgeable about all of this. They represent the best in class for prescribing. Many of our doctors spend more time taking away drugs than writing prescriptions. In fact, I probably tell people to discontinue medicines more than I actually write prescriptions.
It is a matter of physician education, and consumer education. That adult daughter responsible for her mother should be rigorously questioning the doctor as to how important it is that the mother is on three different anti- hypertensive drugs.
The Chair: So the reality in the field is what we've seen in other studies. Is the idea of electronic health and medical records in the local doctor's office still more myth than reality?
Dr. Reichman: I think the promise has not yet been realized. It doesn't mean that the potential is not there.
The Chair: That's a very good way of putting it.
Senator Raine: As a follow up to that, I think while it's very difficult for most Canadians to find a doctor for life, most of them can find a pharmacy that they can stay with long term. Working with a pharmacist on those lists is probably a better opportunity to get them right.
I know we're not talking about research in our study, but in my research I have been coming across a lot of advances made in brain scan imagining giving the ability to detect changes in your brain early on and actually do something about it before it's too late.
Is this part of what we could look forward to in terms of helping middle-aged people who are very concerned about their health and, as you found out, very anxious to get their questions answered?
Dr. Reichman: Yes. I think that imaging is one of the more exciting developments. We now have the capacity in Alzheimer's disease, as an example, to image a middle-aged brain like mine and actually visualize some the pathological changes that occur many years before the onset of the dementia symptoms.
That is called amyloid imaging, and right now studies are being done where we image people not showing signs of dementia, but who may have a family history or genetic risk of it. We image their brains, we see in their brains that they have an abnormal accumulation of amyloid — which puts them at risk for eventually getting dementia — and we put them on an anti-amyloid drug now to see whether it wholly prevents them from getting dementia at age 75, or at least delays the onset.
There are four critical trials going on globally right now to see if that approach is going to bear fruit. We hope it does, but if it doesn't, it will completely reboot the computer as to how we have conceptualized what causes Alzheimer's disease in the brain.
We are becoming increasingly capable of saying who, in middle age, is at risk and then testing therapies on those middle-aged people before they develop the confusion of dementia. But right now, we don't have a therapy we can give someone like me to prevent me from getting Alzheimer's disease, even if the brain scan shows abnormal amounts of amyloid accumulating in my brain.
Senator Raine: If you wanted to get your brain imaged, just to put your mind at ease, could you do that?
Dr. Reichman: Right now, imaging your brain for the accumulation of amyloid, which is one of the more promising directions, is not available clinically. It is only available through participation in a research study. You can go to a laboratory now and get genetic testing for the identification of most common gene that confers a risk for getting Alzheimer's disease in older people. That is called the APOE 4 allele.
The problem there is that if you have one of these genes — perhaps you got from your mother, because we get one copy of every gene from each parent — it gives you approximately a 35 to 40 per cent lifetime risk for getting Alzheimer's disease, but it also means you have a 60 or 70 per cent chance of not getting it. The information is not all that meaningful, so for that reason, we don't encourage people to get this kind of gene testing.
Senator Raine: I saw a TED Talk about SPECT imaging. Is that a different kind?
Dr. Reichman: It is a different kind of imaging. What we are looking there at the relative proportion of blood flow to different parts of brain. In Alzheimer's disease there is a characteristic abnormality in blood flow, particularly to the posterior, or back, portions of the brain, which are important to some of the intellectual functions that are lost in Alzheimer's disease.
However, SPECT scanning lacks the specificity and sensitivity to be reliably used. If we are concerned about someone's dementia and we want to order SPECT imaging, it may be because we are confused as to what the cause is, whether it's Alzheimer's or some alternative cause. We might get SPECT to help answer that question but as a routine imaging modality, it is of little usefulness.
The Chair: This has been a remarkable session and as was said earlier by my colleague, you have brought to us the kind of information we were hoping for. We deliberately chose you hoping that we would get unique insights into this, based on your backgrounds and experiences and it has certainly been the case. Your responses were tremendously thoughtful, very clearly articulated and extremely beneficial to us.
When you do leave here, if there is any issue that occurs to you that you wish you had mentioned, please get to it to us through the clerk. And, of course, you are going to recommend an organization to deal with this that's effective and accountable as we go forward.
On behalf of committee, I want to thank you for coming here and presenting to us in the way that you have, and thank you, again, to my colleagues for the questions you asked.
(The committee adjourned.)