Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue No. 5 - Evidence - April 21, 2016
OTTAWA, Thursday, April 21, 2016
The Standing Senate Committee on Social Affairs, Science Technology met this day at 10:30 a.m., to continue its study on the issue of dementia in our society.
Senator Kelvin Kenneth Ogilvie (Chair) in the chair.
[Translation]
The Chair: Welcome to this meeting of the Standing Senate Committee on Social Affairs, Science and Technology.
[English]
I'm Kelvin Ogilvie from Nova Scotia, chair of the committee. I will invite my colleagues to introduce themselves.
Senator Gagné: Raymonde Gagné from Manitoba.
Senator Stewart Olsen: Carolyn Stewart Olsen from New Brunswick.
Senator Marshall: Elizabeth Marshall, Newfoundland and Labrador.
Senator Frum: Linda Frum, Ontario.
Senator Merchant: Pana Merchant, Saskatchewan.
Senator Art Eggleton: Art Eggleton, senator from Toronto and deputy chair of committee.
The Chair: Thank you very much, colleagues. We are continuing our study on the issue of dementia in our society. Today we have two groups presenting, and following their presentations I will invite my colleagues to ask questions.
We will start with the Canadian Home Care Association, Nadine Henningsen, Executive Director, and Susan May who is National Director for GE Healthcare.
Nadine Henningsen, Executive Director, Canadian Home Care Association: As Executive Director of the Canadian Home Care Association, and on behalf of the membership across Canada, I would like thank Senator Ogilvie and committee members for this invitation to present to you today.
The Canadian Home Care Association is a national, not-for-profit membership organization that represents home care stakeholders from governments, health authorities, publicly funded home care programs, service providers and medical and technology companies.
This morning I would like share with you some examples, challenges and opportunities for providing home care services in the community for seniors, for individuals with dementia and health challenges, but with a real focus on technology-enabled home care. Technology-enabled home care offers a promising pathway to bend the health care cost curve. It provides a valuable solution that enables seniors to live safely, independently and with quality of life in their homes. It also supports the vital role of family caregivers, and often provides the much-needed respite or relief from caring.
Are our health system and our society ready for technology-enabled home care? We, as a society, are going mobile. As a matter of fact, according to KPMG, Wi-Fi and mobile-connected devices will generate 68 per cent of Internet traffic just by next year. Everyone is going mobile.
Technology use in home care is also increasing. In 2013, 5,000 patients were enrolled in 19 remote patient- monitoring programs across the country in seven provinces and territories. According to the Harris/Decima poll, 10 per cent of Canadian adults use medical devices that capture and transmit their personal health data to professionals for monitoring. We expect these numbers to increase.
Seniors are embracing technology. According to a recent survey, 76 per cent of seniors say they use social networking to stay connected and keep in touch with friends and family. My 85-year-old father is the IT expert for the Canadian Home Care Association.
What does technology-enabled home care look like? Well, Telehomecare, Telehealth or mobile health applications monitor individuals at a distance. They are particularly beneficial for individuals who are unable to travel, or live in rural or under-serviced urban areas. The use of mobile smartphones and tablets allow the transmission of a diverse array of health care data. You can transmit physical, biological, behavioural data and images from patients to health care providers so their conditions can be monitored and evaluated in a timely manner, and often in real time.
Successful home care pilot projects using this type of technology have been implemented in various regions across the country. These pilots have resulted in an annual cost avoidance of $55 million, and a personal travel cost savings of over $70 million through technology.
Telemedicine is another type of technology-enabled home care. It can be used to ensure a safe home environment for seniors with complex medical conditions. We know that medication errors and incorrect usage of medication is one of the major causes for illness, treatment failure, and often falls for seniors in their home. A really neat technology is the medication prompter reminder that includes user-friendly technology. It uses a watch, a phone or a TV customized to the individual patient and their caregiver needs. This technology allows real-time monitoring and communication between the patient and their caregivers.
New Brunswick has included this technology in their Home First strategy, and British Columbia's currently piloting a number of these initiatives.
Individuals with congestive heart failure also use tele-monitoring to monitor in their home their weight, vital signs and their activity levels after an operation. Alerts are sent to clinicians when the patient's data is outside the expected range. My colleague Susan May from GE can share her experience with an application in Alberta with you during the question period.
Another type of cool technology is sensors. Sensors enable independence and quality of life for seniors with cognitive and physical challenges. These applications use wearable devices or motion sensors located throughout an individual's home. The sensor technology can measure any number of characteristics. When something is abnormal, it immediately alerts caregivers or emergency response systems.
A neat application of technology, particularly for dementia, is GPS devices. They are included in ID bracelets, watches or even in shoes. They can track the whereabouts of individuals with dementia, particularly those who wander. Alberta Health Services is piloting the use of this GPS technology to support their clients with dementia and include the caregivers in their care treatment.
It's easy to envision a future system fully immersed in a range of technologies that improve care, support greater levels of self-care, reduce hospitalizations and emergency use, reduce medical errors and enable the right care in the right place by the right person. Our challenge is how do we attain this vision?
The challenge is actually a series of interrelated issues I'll share with you. The first is awareness. What technology is available? What works? Home care leaders and decision-makers are not experts in technology. In fact, there are very few chief information officers in government or private home care organizations.
Where do decision-makers at various policy and operational levels learn about new and emerging technology? Where do they find relevant and reliable information? How do we make sure that governments and providers learn from each other so we don't duplicate efforts across the country, which unfortunately we are now?
The second consideration is scalability. A significant hurdle to overcome is the need to change traditional operational and funding policies to support the application of new ways of doing things. Although there are many successful models of technology-enabled home care, most of these have been implemented only as a pilot, with limited or no long-term funding or resources to scale beyond that. We at the association refer to this as the "perpetual pilot'' syndrome.
This issue leads to the third consideration, which is sustainability. This includes considering payment systems and incentive models to sustain long-term adoption of technology. Delivery systems need to change from the face-to-face interactions, or the "fee for service'' model, to recognize remote access and self-management as fundamental core services. Strategies that promote patient receptiveness of new technologies and adoption are needed.
I would like to propose three actions developed at the association that we think the federal government could take a very key leadership role on. One is to support a national dialogue to build a blueprint which can be adopted and adapted locally to accelerate technology-enabled home care. This blueprint would explore and address key considerations such as awareness, assessment, scalability and sustainability issues.
The second area the federal government could take a lead role in is funding an innovation fund for technology- enabled home care. Adapting innovation throughout the home care sector is not a single event or activity: It's a process. A targeted innovation fund provided by the federal government could accelerate the application, spread and scale of very successful pilots so that they could become part of the core programming.
A third area the government could take a leadership role on is to build a central repository of new and emerging technologies. Home care decision makers need access to information on technology and tools to assess, implement and scale solutions within their unique provincial context. A coordinated way to share experience and evidence would reduce duplication and save enormous amounts of time.
In conclusion, there is enormous potential for technology-enabled home care. The time is right, the need is now and the opportunities are endless. If the evidence is available and the political will exists, decision makers are supported with appropriate information and resources and there is a long-term vision in sight, there is every reason to believe that patients, providers and our health system will realize the benefits of technology-enabled home care. I look forward to our discussion. Thank you.
The Chair: I will now welcome VON Canada and invite Jo-Anne Poirier, President and CEO, to give their presentation, please.
Jo-Anne Poirier, President and CEO, VON Canada: Thank you very much. I appreciate the opportunity to come speak to you this morning.
[Translation]
I am delighted to be here this morning.
[English]
I fully endorse my colleague's comments, being a member of the association.
I know that you have been hearing from a whole range of experts and stakeholders on the subject of a national strategy on dementia. I want to commend the committee and each one of you for this very important work. VON is Canada's longest standing home and community care charity. Next year we will celebrate our one-hundred-twentieth anniversary. We began our work long before there was a public system and have worked in all corners of the country. We have been bringing health care into homes since our beginning. We have founded hospitals. We have moved to where people were and provided the services needed. That is still true today in many respects.
Today, and for now, our work is focused in Ontario and Nova Scotia, where we serve more than 10,000 people each day. We're service providers to government, providing visiting nursing, home support and a range of upstream services like Meals on Wheels, adult day programs, supportive housing, seniors' fitness, nutrition and other services aimed at keeping people healthy and happy in their own homes for as long as possible. We play a role in health promotion, disease prevention and in caring for the sick and their families.
You have heard about the nearly 750,000 Canadians who have Alzheimer's disease or another form of dementia and of the 6 million Canadians over the age of 45 who are the informal or unpaid caregivers. Among those who care for loved ones with dementia, about one third report symptoms of depression. Unpaid caregivers are our country's silent patients. They care out of love, necessity or both. In spite all the good work of many, they have insufficient support for this work and insufficient alternatives.
VON believes that the federal government has a strong leadership role to play in health care. While the provinces are based on the provision of care, you can play a role in supporting research and innovation to strengthen our understanding of dementia and to lead to cures. You can enable prevention and education as well as strengthened care practices and care management. There are three pillars of the strategy: care management, prevention and cure.
We, like many others, believe that the time has come for a national strategy. Existing models like the Mental Health Commission of Canada can provide clear lessons for the "how.'' We support the engagement of a broad spectrum of stakeholders in the development of the strategy. We believe the government is well positioned to lead and fund the establishment of a body to craft and facilitate the implementation of this strategy.
We also believe that there are things that can be done now, in advance of the formation of a body to take on a strategy. I am here today to offer support for the development of this strategy, but to speak to the value of home care and of improving and enabling accessibility of home care as a critical enabler of care for people living with dementia and for their families. I offer some thoughts for consideration and urge the government to begin its investment in home care and caregiver support.
I'm fortunate to have the opportunity to visit clients and patients across our organization as I travel to VON sites. A man I met in Barrie a few years ago stands out in my mind. He was a lovely man who was 82 years old. He was a retired senior public servant who was bright, active, engaged in the community and still downhill skis. His wife has dementia and he is able to keep her at home because every day she attends a full day adult day program where she has made new friends and participates in physical and social activities and is served healthy meals. He has come to terms with the loss of the woman he married and has found a way to manage through the challenges of living with a partner with dementia. He has the support that allows him to stay whole and his wife to remain engaged. So you see the impact one program can have on the entire family.
With respect to home and community care, I offer the following thoughts for consideration. People want to age at home and governments support this for both social and economic reasons. Informal caregivers carry the greatest burden and sacrifice income, jobs and health to provide their services, most often with few resources and little respite.
Navigating the health system is a huge challenge for many. Services are segmented, the system is siloed and precious time and money are wasted as patients and their family members move from one part of the system to another. Today's overstressed caregivers may well be tomorrow's dementia patients as their own health takes a back seat to that of their loved one.
Home and community care service providers are insufficiently resourced to invest in technology and innovation that could improve quality of care — to my colleague's comments. Provincial governments are obliged to focus on efficiency in home care, as budgets cannot keep pace with growing need.
To illustrate the point, while one nurse may have had time to have tea with Mrs. Smith and reduce social isolation, the funding model does not support that. It's about productivity and efficiency guaranteeing good quality care, but the human element has perhaps suffered as a result.
Upstream services like nutrition and seniors' exercise are often highly reliant on charitable donations and access is often a challenge. We are talking to the various provincial governments about funding such community support services.
Where you live matters: The rural-urban divide is real, and one size does not fit all in home care. This is another conversation we are having with government. There is an additional cost of travel in rural areas and requires special consideration.
The problems seem huge and complex, but the solutions can be very simple. Supports like adult day programs, in- home and overnight respite, are high-value, low-cost antidotes to caregiver burnout. Health teams centred on the patient and family reduce the burden on the caregiver. Investments in caregiver education, promotion of workplace support for short- or long-term caregiver leaves of absence and greater financial support through tax credits for caregivers would provide needed underpinnings and, of course, enabled technology.
[Translation]
Thank you for listening and for choosing to study such an important issue to us all. Thank you.
[English]
The Chair: Thank you very much. I will now turn to my colleagues.
Senator Eggleton: Thank you for your presentations. Let me start, Ms. Henningsen, with your presentation, which is all based on technology-enabled home care. That is very interesting. I see a lot of it as very beneficial, but we can't forget the human touch in all of this as well.
You mention the benefits in terms of things like telemedicine and care data, sensors, GPS technology for people who wander off, the bracelets and all of that. You also seem to put some emphasis on seniors in general being very much in touch with social networking and use of the Internet. You mentioned 76 per cent of seniors. You mentioned your father at age 85. Getting to dementia, people are going to have varying capabilities to do that. Maybe at early stages they can, but at the later stages I don't see how that is possible. Again, the human touch becomes very important here.
I think it's fair to say that in terms of the need for supports, it's more social supports than medical. The medical part of it is vital as well. However, the social supports, day-to-day living, helping to cope with dementia, particularly in the advanced stages, are very important.
Could you comment on the use of technology in terms of people advancing in dementia? What way can we better integrate and coordinate health and social services? What would the federal role be? You could all answer that last question.
Ms. Henningsen: Thank you. I'm going to wear a different hat for you right now. I came as Executive Director of the Canadian Home Care Association. I'm also President of Carers Canada. It's the national coalition of caregiver groups. So I will talk about technology and how it can support a caregiver.
When you have an individual living with dementia, the caregiver becomes absolutely critical. Supporting the health and well-being of that family caregiver and the family network is the difference between being able to live at home or being placed in a facility.
We have seen applications of this. Technology can reach into a home to support a family caregiver, or carer with information and coaching. Technology can also reach out from the home. This is the web-based, social networking technology. There are a number of different applications focusing specifically on family caregivers where you can share mom or dad's information, or whoever you're caring for. You can share their daily schedule. Even though my siblings may be all over Ottawa, my brother can pick up this moment and I can pick up that one. We can share the burden.
As my colleague Jo-Anne mentioned, caregiver burnout is so important. When you're a caregiver of an individual with dementia or Alzheimer's there is a lot of emotional upheaval and feeling of hands-on responsibility. This type of technology broadens your scope and provides you with information. It allows for a bit of respite time because it opens up the whole concept of team caregiving rather than just one individual.
There are lots of opportunities. We certainly see them implemented, once again in a pilot, unfortunately. There are lots of opportunities to use technology to support that human touch. We certainly know that you can't replace it, but I'm thinking to support the human touch of that informal or family caregiver.
We have been working closely with the federal government for a number of years now. They could certainly assist by enhancing Compassionate Care Benefits to go beyond the diagnosis of an individual dying. They could also bring awareness to these types of technologies and support them.
The one in New Brunswick using the home monitoring is a perfect example of helping accelerate that so that these technology companies can get a foothold and really show that they can provide great results. So there are a lot of opportunities.
Ms. Poirier: I would like to address the question that the senator asked about the integration between health care and the social services. It's a very important point. At VON we offer the full basket of services. We have been having increasing dialogue with the government regarding providing services in a congregate setting, such as the adult day program, which has many benefits. So while traditional home care is important, moving to more of a community support services can also enhance the affordability of the overall system. I'll give you a couple of examples to illustrate the point.
Rather than having a personal support worker go in to prepare a meal three times a day, we're having conversations with the Nova Scotia government about Meals on Wheels, with volunteers and transportation services, transportation services to offer to bring someone with dementia to a clinic rather than in-home care. There are many alternatives which may be offered to make the system more affordable.
The federal government could play a role in the policy framework, helping to link those two siloed services, better integrate them, which provincial governments could follow. The federal government could look at a form of standardization across Canada, where it is appropriate.
Senator Eggleton: The VON is a long-established, highly-regarded institution in this country. The seniors' population is increasing. The incidence of dementia and Alzheimer's is increasing, yet VON has pulled back from six provinces. You're now focusing on Ontario and Nova Scotia. Why is that when the demand is getting heavier? What has happened to the patients you were looking after in terms of home care in the six provinces?
Ms. Poirier: Thank you for that question. It's a good opportunity for me to respond.
What we had to do as a not-for-profit organization is to take a business-like approach to the offering of health care. Home and community care has become increasingly a commoditized business. We had a very small presence in those provinces, offering mostly private pay because the governments had taken over some of those services. We would have required a much greater time and investment of money to make those break-even opportunities. To illustrate the point, it represented for $10 million of our $285 million business and 5 per cent of our staff. We deeply regretted having to make that decision.
We hope to become a national organization in the broadest sense of the word in the future. However, in order to be able to concentrate on our core services, being home care and community support services, we had to make that tough decision.
We worked with the governments to provide, where possible, transition for those clients. To illustrate the point, in Newfoundland we worked with the Red Cross. In fact, we donated $50,000 to assist with the Meals on Wheels program to transition so clients could receive care on an ongoing basis. It was a very tough but necessary decision.
I arrived in the organization in January of 2014 with a background in business, municipal government and not-for- profit. It's increasingly incumbent on not-for-profit organizations to look at operating in a business-like fashion.
I referred earlier to the need for productivity and efficiency. We are unionized and have offered a defined benefit pension plan. We're competing for government business with the private sector. So you can imagine that we must reinvent ourselves. We have a history of successfully doing that.
As I referred to earlier, we used to found and run community hospitals. We no longer do that because it was then transferred and taken over by someone else. So we are very intent upon looking at our current business model and at future opportunities. It is our intent to be here for at least another 120 years in the Canadian landscape.
Ms. Henningsen: If I may, I'll add an interesting point about the increased demand for home care. Over the past seven years, the demand for home care has increased by 55 per cent. The percentage of public funding has decreased overall. It's only 4 per cent across Canada. In some provinces and territories, the percentage of the public funds allocated to home care has actually decreased. You can imagine the challenge of having to manage that increased demand and increased complexity with fewer resources, hence the reason why we're challenged to look for new ways of doing things.
Senator Eggleton: That's why you're coming up with all this technology.
Ms. Henningsen: It sure is.
Senator Stewart Olsen: Those were very interesting presentations, and they totally surprised me. I'm happy to learn about the inclusion of technology. It's so incredible. There are a lot of people with dementia who are wanderers. I think it would ease a family's minds if they had a GPS or tracking.
I live in a rural area. It's a poor area, so affording these kinds of things is not the easiest thing to do. Do you actually see that as realistic in the most rural areas?
Ms. Poirier: I would like to offer a comment. Being a service provider to the government, our rates are set and have been increasingly compressed over time. The point that we have been making is to provide funding for that technology. We have rolled out mobile technology to our front-line nurses and personal support workers. There could be programs whereby, when you onboard someone into home care services they could be provided with a device funded by the government, perhaps in partnership with the private sector. Certainly, I think it could be more accessible.
To my colleague's point earlier, I think that the government is struggling with realizing that home and community care is definitely part of the solution and reducing funding to the acute care sector, but we are not there yet in terms of that transition. I think that technology as a tool, as an enabler, could be part of that solution.
Ms. Henningsen: With regard to some of my comments about having to look at the way fundamental operational processes and funding processes are working right now, we have to challenge ourselves to say, "Providing or funding for a GPS tracker gives the value and outcomes we are looking for.'' Then, instead of allocating funds toward the traditional way I would do it, I will now allocate money toward this GPS tracker. Right now it's always an addition.
That's why we are in a perpetual pilot, because governments see investment in technology as an additional expense that they just can't take on. When they build an organized pilot with outcomes, they see that the ultimate investment of technology gives you huge benefits for the patient, for the provider and for the system. It's that tipping point that we haven't reached yet but need to.
Senator Stewart Olsen: The GPS tracker would be monitored by the family, am I correct, or the caregivers? That seems to make more sense to me than, perhaps, home care workers.
Ms. Henningsen: Yes. With the Alberta Health Services pilot, their Home Care program is providing the GPS. It is part of the individual's care plan, but fundamentally they are empowering the caregiver team to be able to monitor and track their loved ones.
It is interesting because it is a shift. Certainly from our experience with family caregivers, they want to take on this responsibility but they need help. You can't just hope for the best; you need help with different supports.
The Chair: Do you want to come in on this, Ms. May?
Susan May, National Director, GE Healthcare, Canadian Home Care Association: Yes. Being a technology company, we are careful about ensuring that we are not replacing the human touch with technology. It is all about the extension of the human touch.
Technology cannot stand alone. It has to be wrapped up in a program. When you are talking about a GPS-type program or anything where you are providing support, particularly in a rural and remote environment, there has to be a program that supports that. When we are working with our organizations, most of the time is actually spent developing the program, making sure the structures are in place to support them and that the environment is safe for the people using the technology.
Senator Stewart Olsen: I think that is a good point: There has to be a support program along with it.
Senator Marshall: Thank you for being here today. It's quite interesting.
I know our study is on dementia but you are here talking about home care, and, of course, it's not just provided to people with dementia. These services are provided to people with an array of special needs. I was thinking not just about dementia but people with MS, Parkinson's, autism and age-related issues. For example, I know people in their late 90s who receive home care services because they are still in their own home. Whatever is decided or whatever the project shows with regard to dementia has to fit into an even bigger program that takes into consideration all these other special needs. It's quite challenging because you are trying to balance services and supports with a budget because everything comes back to money.
In the area of home care, I am from the province of Newfoundland and Labrador and we have seen the costs of home care services skyrocketing. I'm sure that most provinces have had the same issue.
There are a couple of areas that I would like you to speak to. One is regarding the issue of providing services and balancing that with the availability of resources. I would also be interested in hearing your views on whether the assessments of patients receiving services have been an issue in recent years, because it was a number of years ago.
I would also be interested in hearing any comments you might have on the source of workers. That has always been a challenge with regard to finding sufficient workers with the skills to provide home care services.
There is also an issue with regard to paying —
The Chair: Maybe you could ask a question or two so that everyone can keep this straight.
Senator Marshall: Okay. Perhaps we can start there. I was afraid I would run out of time, Mr. Chair, and I wanted to get all my questions in.
The Chair: You may, but asking them all at once won't get you any more time.
Senator Marshall: I saw them writing them down. If you could start, I would be interested in your comments on those issues.
Ms. Henningsen: For sure, and I will try to keep my comments brief.
Certainly the balancing of services and resources ties to the human resource issue. We have seen projects — not necessarily technology — that have funded additional services and a new way of doing home care, maybe a way of integrating home care with acute care and working that integrated system, with lots of money given to both the community and to the home care program, yet nothing changed. What went wrong? The philosophy of discharging individuals to the home or ensuring a safe home wasn't built into that. The resources and the workers weren't considered. If someone wrote us a $3 billion cheque we would smile and say thank you, but we have a lot of work to do to build human resources, particularly personal support workers because they are key.
I will go back to my technology discussion. One of the things we are seeing, which is interesting — and my colleague may be able to expand on this — is the use of technology for continuous and self-directed learning for home support and front-line workers. National organizations are working to provide, for example, a dementia program, but how do you get that out to all those mobile workers? They are using web portals and online PDAs. They are using an interesting way to be able to get that information out to a very mobile workforce. Fundamentally, home care is mobile; it has no walls. The concept of technology allows us to be able to add that mix into the resource service question that we ask ourselves.
Ms. Poirier: I believe it is by doing things differently. I think the system has to be re-engineered. We are working with a couple of the provinces on just that. As you know, the Province of Ontario is looking at restructuring the whole system. I think through that and better integrating public health with primary care teams, the hospitals and home care, it really is much bigger than just home care. It is about using your resources differently. I believe that technology is one element.
I agree with my colleague's comment about remote access to self-directed learning. We use that utility and that form of learning at VON quite extensively.
Senator Marshall: Have you found that the integration of the teams, as you referred to, and also the use of technology is impacting the budget in a positive way? My experience in government has been that government does something thinking they will save money but it almost never does. It always ends up costing more. What is your experience? Does it improve services and save money?
Ms. Poirier: I think if we go in trying to save money, it may not be the best approach. It is better value for the money we spend. It really is about having higher desired outcomes.
As we look at bundled care and bundled services, some provincial governments are looking at having those integrated services where the different service providers wrap around a client and have the desired outcome for the same investment of money.
Ms. Henningsen: We had the opportunity to work on an integrated program looking at integrating home care and primary care, which was fascinating because we know we need that family doctor team involved in any home care we do.
Initially, the cost went up because you had to bring the team together. They had to learn how to work together. You had to go through that change management. Usually we give up then, but we continued it. As we continued it we saw provider satisfaction went up and the cost-per-visit actually went down. That is where you have to hang into these pilots and keep going and spread them and really fund them to actually see the end results.
Senator Marshall: I would expect all across Canada there are family caregivers. I think one of you mentioned in your opening remarks that there are 6 million family caregivers. Does any province pay family members for providing care to family members with special needs or dementia? Is there anything along those lines for any type of disability?
Ms. Henningsen: The provinces of Nova Scotia and Manitoba have a caregiver allowance. It's not a tax credit. It's not necessarily for a caregiver looking after someone with a disability. It's for a caregiver looking after someone who meets a certain threshold receiving home care so that they would be financially challenged and the individual home care would have a certainly level of complexity. They can actually get an allowance, but those are the only two provinces that do it.
Senator Merchant: First, a brief comment and question.
You have said that seniors are very engaged with technology. I have my own experience. When those little gadgets first came out that you could put around your chest, I knew two or three people that had them and they hung them on their bedpost. They would be wandering around their apartments and I would say, "What is that? Oh, that is my monitor.'' I would say, "You need to keep it around your neck.'' I don't know how it will work with technology, but you have assured us that people are engaged in technology. You don't need to answer that.
Yesterday we had people from the indigenous community here. They spoke about the challenges they face in their communities regarding people with dementia and other issues, but we are studying dementia here.
Do you have some engagement with First Nations communities? What are the special challenges? Many are remote communities and they have their own ways of doing things, some of which are different from ours. Could you comment on the kind of work you have been doing in First Nations communities and the special challenges they are facing?
Ms. Henningsen: Can I answer your life-line question first about the gadget? Do you know what they do now with the gadget? If it stays stationary for too long, they know it's on the bedpost. They are monitoring you, so they can follow up on you.
With regard to First Nations, we had an opportunity to do a pan-Canadian scan looking at promising practices in First Nations.
I apologize, but again I will go back to the concept of technology for First Nations. We found a promising practice in northern Ontario, where technology was being used for training front-line workers. There was a process. As Susan mentioned, they couldn't just bring in a technology and say, "Here, now use it.'' They modified, adapted and worked the technology into the actual process of how this First Nation community provided home and community care. The end result was absolutely fabulous. They are definitely a spotlight best practice. As a matter of fact, right now they are the only First Nations community in Canada that we know that is using that type of technology.
Fundamentally what they continually run into is connectivity issues. You are halfway through a training course — and I don't know if it is good or bad — and you lose the network so you can't finish that training course. Maybe for the person being trained it's good; for the person doing the training it's not. I don't know. Connectivity is always a challenge.
The Chair: Before I turn to the second round, I have a couple of questions.
Ms. Poirier, you referred to the Mental Health Commission as a possible model with regard to a national strategy in this area. This is an important issue for us to consider. We are looking at the idea of a national approach to dealing with dementia. That fits into a number of other issues that are always related in this area in terms of how you deal with people.
However, we get all kinds of recommendations that this or that should be done, and so on. Well, in order to do that, there has to be a very effective organization of any national approach all the way from identifying the issues to identifying best practices and actually extending them, getting us beyond this nation of continuous pilot projects into one where we actually identify innovative activity and are able to move it from one jurisdiction to another for the benefit of Canadians.
The second issue that we are dealing with in trying to identify that is the balkanization of this country based on the Constitution and the absolute unwillingness, often, of parts of our federation to work with other parts of the federation to achieve any kind of regional, let alone national, kind of program to deal with an issue.
With that background, I want to come back to your suggestion of the Mental Health Commission model as a possible model for us in terms of that. What are the characteristics of how they are operating that you would offer to us as valuable in looking at them as a potential model?
Ms. Poirier: I think that further discussions would obviously have to be held with the Mental Health Commission itself. Looking at an organization that can act as a convenor, where there is expertise to help the government develop policy. How policies can then become programs is important. Then there is the point you made about the national strategy and the fact that there are provincial entities. What we see in working so closely with the provincial entities is the level of fragmentation.
One utility could be through the Health Accord, for example, where you look at setting the policy framework and then look at the various national organizations to see if there is one whose mandate could be broadened to take on that convening role and bring different parties to the table.
We see different jurisdictions in Ontario and Nova Scotia, for example, because of the demographic profile, the size of the communities, and so on. You need an organization that is prepared to have that representation and look at the unique characteristics in the different provinces. There should be a policy framework, but it can't be one-size-fits-all, either.
The Chair: Yes, I understand that. But the Health Accord is really just a vehicle through which the federal government transfers large sums of money to totally independently operating bodies: the provinces. They have no ability to control, even do due diligence, best practices, determine outcomes or anything. The provinces absolutely resist any effort to have any restrictions on the use of the monies when they are transferred.
The issue is really, yes, the Health Accord could identify categories such as home care or some strategy in particular areas for which there is a packet of money transferred to the provinces. The issue then goes, however, into that money just going out to the provinces and it is not necessarily part of a national strategy to identify the issue. We find that there is no mechanism for identifying unique projects that actually work; some body to recognize that; and distribute them even within a province, let alone across the country.
I will not get you to go further today. What I will ask our witnesses today is take those thoughts away and if you have thoughts after you leave here about what sort of organization exists, if any, for which there is the possibility of elements such as the Alzheimer Society that operates nationally as well as in provinces, some model that forms a basis by which we could actually find a way to translate the concept of a national strategy into one that will really work.
I don't want any more discussion now based on what we heard, but I would like you to give that some thought and get back to us later.
I'd like to move to my second question, which is on the technology issue. What we have been hearing this morning is a number of ways technology is being used. One major category is the monitoring. Obviously that is where a tremendous amount of flexible technology will have real benefit.
We are also hearing in this testimony that when we are dealing with dementia patients — and it is not limited, obviously, to dementia patients; aging involves a number of general issues — that socialization is a very important part of how the individual handles the condition or, to put it differently, the evidence suggests they perform better and are happier when there is opportunity for social activity.
We have read of examples where, in the traditional institutional model — and the traditional institutional model is about the worst model we understand in terms of dealing with this — social environments have been created within the complex so people can get together and wander around and be part of a little community. Those have shown real promise in developing positive attitudes within that operation.
One we have heard about recently is the memory cafes, starting in the Netherlands and spreading to the United States. Now they are in New Brunswick and appear to be spreading around the world. This is where people come together. They are in a socialized environment. They recognize the issues they are dealing with and talking with others in the same kind of format. The rates at which they are expanding suggest these are showing some real benefit. They are part of the volunteer community, not part of a business operation. The fact that they are spreading suggests there is something really useful there.
With the technology, I will focus my question on the rural, disparate communities where there are lower population densities and great distances between individuals. Technologies such as Skype, and others, are starting to show networking capabilities that are easy to use, and so on. Do you see the possibility of certain networking technologies that could allow individuals spread across a region to have an ongoing social networking capability with other people or, perhaps more importantly, their caregivers, to share ideas and ask questions in real time? They can't always get a health care worker who is tied up with other issues. Some of these things have been done by other people with major diseases, MS groups and so on. They have effective networking arrangements.
Based on your experience with how technology is being used today could there be, in relatively near time, the use of technology in a socialization aspect of home care?
Ms. Henningsen: Absolutely. I think that technology is evolving as it is being used to support family caregivers. When it was first introduced it was sharing information and putting health care data and stats and that so that I would know how my mom was doing. Technology is now moving, as you say, to a social platform. The concepts of Skype or Facebook are very common. Certainly they are becoming more common with our younger generation, and our younger generation is talking to our older generation. People are using these types of technology. As a matter of fact, with that type technology it would be interesting to take a memory cafe and say we want to do a virtual memory cafe because you can see and talk, and it is as though the individual is right there. So what would a virtual memory cafe look like? Absolutely.
Ms. Poirier: I wholeheartedly agree. When you look at some of our adult daycare programs, you drop off your loved one and there could be a cooking component. Recreational consultants are there to do memory-type exercises, and a lot of those could be done virtually for those rural areas, absolutely.
Ms. May: I will concur. We are always looking at new ways to evolve technology, especially with this population that we are talking about. It is about bringing them together. There has always been the misconception that seniors are a little less willing to adopt technology, but through some of our programs we are finding that they are embracing it, especially in rural and remote areas, because they feel connected. It is not necessarily about the technology, it is really about that feeling of connectedness and being part of something, whether or not it is particularly for the patient or the recipient of care but also for that care provider.
The Chair: Before I turn to the second round I will say that when this technology stuff all started in the late 1980s and early 1990s, it was seniors in rural communities who were the fastest adaptors of Internet email technology relative to youth. Of course that has changed around, but they were on it quickly because it gave them connectivity. They were used to the old style of communicating with "breaker, breaker,'' whatever you may have. They were good at using the initial stuff, so there is no reason to think they can't adapt to this quickly.
Senator Eggleton: I want to focus on informal caregivers. That is, the family and friends who devote an enormous number of hours in care and who, in doing so, frequently sacrifice their own income. They sacrifice their health in many cases. That is where respite care comes into the picture and is often referred to.
Some of the things you are talking about in terms of technology I understand. They could help caregivers a lot. What should the federal government be doing at this point over and above what it has been doing in terms of support for care giving and respite care?
Ms. Henningsen: I think they need to accelerate the work they are doing around building flexible workplaces or encouraging flexible workplaces.
We profiled home care workers who spent all day providing home care and then went home to care for their loved one. It was absolutely fascinating to talk to these individuals who cared 24/7, 365 days a year. They never got off work because they just kept caring. We challenged them to say what they needed from their workplace. It was fascinating that they didn't need a lot. They needed recognition and flexible policies.
I think the federal government can play a key role in that, and they started to. There was an excellent report that came out looking at what employers could do to support their working caregivers. Now the challenge is to put that in action. If they could do one thing, we would really like to see them focus on that and move that forward. That would be huge.
Senator Eggleton: I'm not talking about the professional caregivers; I'm talking about the informal ones, the family caregivers.
Ms. Henningsen: No, but this was a professional caregiver and then they went home and they were an informal caregiver. So they did the whole gauntlet.
It could be any of us. When we are at work, our mind is really at home. How can my employer provide flexibility and understand the needs? I am an informal caregiver but I am also your employee, too. We find a huge economic downside of employers not supporting their family caregivers.
Senator Eggleton: How do you recruit the employers to do this?
Ms. Henningsen: First they need to recognize that they have a problem or that their employees are actually family caregivers. Often, a caregiver doesn't self-recognize. They want to keep it under the carpet in case they will not get that promotion or job opportunity. They need to have a very open environment to recognize caregivers.
When they recognize caregivers, interestingly enough they are simple things, not huge investments. They are things like having someone the employee could come and talk to and share their experience. They are things like every Friday being able to leave at one o'clock and that's okay.
One of the things we saw in the States that employers do is everyone pools their sick leave. If you don't take sick time, it becomes a bank. As a caregiver, I get to access that bank and take a couple of extra paid sick days. I'm not going to use mine; I'm going to give them to you. It's a simple thing. It builds a community within that employer.
Ms. Poirier: There is an educational role as well. In some provinces we have developed training programs for caregivers, everything from how to lift a loved one safely to giving them tools and information. Government can play a role in recognizing that the caregiver is the silent patient, so to speak. In terms of assessing what the caregiver needs are and providing more education in the sense that you're not alone, that others are experiencing the same thing, and sharing of tips and best practices amongst the caregiver community.
Senator Eggleton: Ms. May, you're from GE Healthcare. I assume the GE is not General Electric.
Ms. May: It is our health care division of General Electric.
Senator Eggleton: Okay. Ms. Henningsen mentioned in her opening statement that you have some particular experiences in Alberta that would be helpful to us. Can you tell us about that?
Ms. May: Yes, absolutely. I work for GE Healthcare. I manage our home health solutions division. GE Healthcare typically has diagnostic equipment. That may be what you are more familiar with. We formed a partnership with Intel. We're at looking at providing solutions to help people live independent lives at home, so that's really where our solutions are.
We have just finished a study with Alberta Health Services through primary care, but also looking at how it incorporates through home care of managing people who are living with heart failure. It was really looking at it from a population perspective, so the quality of life, their experiences. How do you build these types of programs? Additionally, what is the benefit to the health system? We are just wrapping up our final report.
First, the patients loved it. They were so engaged. They became much more aware their condition. They understood the triggers. The idea is we would monitor their blood pressure and weight for their heart failure. We would provide them education through a tablet that they had at home, and they would interact with it. There was a nurse looking at this information and understanding their trends, and then interacting if they noticed a patient's condition was worsening.
The idea was: can we help avoid a re-admission back into the hospital or avoid a patient having to go into emergency? Is there a way to divert them back to their family practitioner? That is seen as a benefit to the health system. There was a reduction in hospital re-admissions for that patient population. We also saw that benefit to the patient: They were much more aware of their condition.
There is also that respite capability to the family caregiver, where they felt confident that their husband did their blood pressure and weight and answered the questions. The nurse didn't call them, so they were good to go for the day. Then the wife could actually have some respite and go out and do some grocery shopping or visit, have a coffee with friends. The stories that we received were very powerful.
In fact, we're working with Eastern Health in Newfoundland. They have started a program very similar as well.
Senator Eggleton: I hope GE, as an employer, does the kinds of things Ms. Henningsen mentioned.
Ms. May: Absolutely
The Chair: Are you using the big, data cloud computing area to develop models in this area?
Ms. May: That's a great question. One of the areas that we're getting into is digital solutions. You can imagine in this space the amount of information that we're getting to be able to start looking at this information and predict certain behaviours which might mean a patient would be going to the hospital. By understanding what that information is, can we intervene before that needs to happen? Through our digital solutions we're looking at how we build modeling around that to allow caregivers and care providers to have access to that information to keep people at home.
The Chair: I didn't anticipate this, but yesterday I was having a thorough discussion. I am looking at bringing in a big data kiosk event here on the Hill. One of the issues was the use of the algorithms with regard to GE and some of the things they are doing and Intel and Cray are doing in the health-related area. I was surprised at your comment, so that's why I asked the question. We won't go further with it at the moment. Thank you.
Ms. May: Okay.
Senator Marshall: Could you give us some more information on the pilot project in Alberta where GPS technology is being used to support dementia clients? It seems it's in the tracking the whereabouts of individuals. How practical is that? What is the experience? Many dementia patients wander quite extensively, so you still need somebody to be there at all times. Could you give us a little more information on that pilot?
Ms. Henningsen: It's a relatively small pilot. It's in the Edmonton zone of Alberta Health Services. The individuals they chose for the pilot were mild wanderers, if you can call them that. They may have had a history of one or two episodes or incidents. More important than knowing that your loved one has wandered, the information helps to start to track and understand if there is a trigger that could start a wandering episode. Is there a situation that has happened and then my loved one has wandered? They are trying to really look at the back end as opposed to where is my loved one.
Senator Marshall: I would have thought you would program an area in which you wouldn't be concerned, and then when they go outside this area something happens. Is that how it works?
Ms. Henningsen: Yes, in the program, there are cues that allow a caregiver to know if an individual has gone beyond a geographical area, or cues for the individual. It's actually a PalmPilot. The cellphone actually directs the individual back to where they should go. It's kind of a reaching out, but also monitoring. These are individuals with relatively mild dementia.
Senator Marshall: Direct a patient to go back, interesting.
Ms. Henningsen: Often with a cue someone can understand what they are doing and where they are.
Senator Marshall: When you say a small project, do you mean 10 individuals?
Ms. Henningsen: I believe they enrolled about 30.
Senator Marshall: That would be interesting. Based on my past experience, which was a number of years ago, once dementia patients reach a certain point they are kept within a locked area. It seems like we're trying to move away from that.
Ms. Henningsen: Yes. That type of individual would not be the profile of an individual receiving home care. At that point, you would make that decision based on an assessment that home care is probably not the best place. It becomes a dangerous area. Then you would look to find an alternate living arrangement. I can share that study with you.
The Chair: Would you send it through our committee clerk? Then we get it into the right channel and everybody can have access.
This has been a very interesting discussion. We were really looking forward to having you here and particularly hearing the VON experience, both in terms of future directions and of your experience and dealing with home care in many areas. So you have all brought very interesting ideas to us.
I want to come back and ask you to focus in on that idea of a national strategy and a kind of mechanism, a body- type structure, that government could fund but would have the potential of actually interfacing with the provinces in a different way than a federal government has of interfacing with the individual provinces. That's really the crux of the issue. We can identify all kinds of things that should be in a national strategy, but ultimately that has to translate into action. That's not what we're really good at so far, it seems.
With that, I want to thank my colleagues for their questions and you for the thoroughness of your answers.
The meeting is adjourned.
(The committee adjourned.)