Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue No. 6 - Evidence - May 4, 2016
OTTAWA, Wednesday, May 4, 2016
The Standing Senate Committee on Social Affairs, Science and Technology met this day at 4:17 p.m., to study 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 Technology.
[English]
I am Kelvin Ogilvie from Nova Scotia. I will invite my colleagues to introduce themselves, starting on my left.
Senator Eggleton: Art Eggleton, senator from Toronto and deputy chair of the committee.
Senator Merchant: Good afternoon. Pana Merchant from Saskatchewan.
Senator Omidvar: Hello. Ratna Omidvar from Toronto, but not a member of the committee.
Senator Nancy Ruth: Nancy Ruth from Ontario.
Senator Stewart Olsen: Carolyn Stewart Olsen, New Brunswick.
The Chair: Thank you, colleagues, and I will remind us all that we are continuing our study on the issue of dementia in our society. Today, we have two witnesses appearing, and by agreement I'm going to first invite, from the Ontario Retirement Communities Association, Laurie Johnston who is Chief Executive Officer.
Ms. Johnston, please.
Laurie Johnston, Chief Executive Officer, Ontario Retirement Communities Association: Thank you very much and good afternoon.
My name is Laurie Johnston and I'm the CEO of the Ontario Retirement Communities Association, also known as ORCA. I'm grateful to be here today to help contribute to your report on the issue of dementia in Canada. I've read with interest the submissions of the other experts and panellists and am pleased to see the many ways that people and organizations across Canada and internationally are working collaboratively on research, programs and services that will help individuals living with dementia.
ORCA is the association for operators of retirement residences in Ontario, representing over 90 per cent of the sector. There are over 700 licensed retirement homes in Ontario, with more than 55,000 total residents.
Retirement homes in Ontario can be for profit or not for profit but are not subsidized by the government. They offer a non-institutional housing and care choice for seniors, one that provides a safe, comfortable environment; opportunities for engagement and socialization; and supportive services to meet their needs. Overall, service levels can range from independent living to assisted living and memory care with individual services such as assistance with medication, hygiene or dressing available in packages or à la carte. With extended services, residents are able to age in place.
We know that the prevalence of dementia is increasing as our senior population grows. While seniors living with dementia may be supported in the community for a time by their network of family and friends, many require greater care and support as the disease progresses. Retirement homes offer a viable option for seniors who are frail, either mentally or physically, and who need more support by providing safe, welcoming environments that enable them to live active and engaged lives.
Retirement communities are peoples' homes, and thus their approach to dementia care is based on person-centred care and support. It is important to note that retirement homes are different from institutional settings like long-term care homes in that they provide services with a focus on hospitality, welcoming the input of the resident and their family. This allows operators the flexibility to create programs that support residents requiring varying levels of assistance.
For example, seniors with moderate dementia are able to thrive in the general retirement home population, where they are able to socialize with other residents and are supported by staff sensitive to their needs. For seniors with more advanced forms of dementia, many operators have created memory-care units that provide specialized programming and environments, often in specific areas or on a dedicated floor.
Regardless of where the resident is in their journey, staff make a commitment to focus on the individual rather than on the disease. They know it takes time to build a trusting relationship with the resident, which is essential to not only understand where the resident is in their journey but to understand their life story leading up to it. This helps them to foresee potential challenges and risks and allows them to build programs based on the resident's behaviour. For example, if a staff member notices that a resident responds well to music, they will create an individualized music program for him. This type of commitment and experience would not be possible in an institutionalized setting.
Education and research are the pillars for building successful support teams for residents. As an association, we support our members by providing them with educational materials to help them better care for residents with dementia. ORCA has created an e-learning platform that provides members with tutorials on best practices to make the most of their interactions with residents suffering from cognitive impairment. In designing our tutorials, we partner with subject-matter experts such as the Alzheimer Society to ensure our members are receiving the most accurate, up- to-date training available.
This system is the only one of its kind in Canada and is available in Ontario and in Alberta through our partnership with Irene and her association, and across the country in homes whose companies have adopted it on a national scale. Many operators who provide more advanced memory care have specific in-house training to enable their staff to provide meaningful experiences for their residents on a day-to-day basis. The specialized memory-care programs offered in retirement homes can help to slow down a resident's cognitive decline and can, in turn, delay their need for a long-term care facility.
What we see as the biggest gap in the current system is accessibility. Unlike our counterparts in other provinces or countries around the world, retirement homes in Ontario are not subsidized by the government. Many seniors facing challenges with dementia, who could benefit from these supports offered in retirement homes, simply do not have the means to access them. As a result, there is a significant gap in access to these services between those who can afford to pay and those who can't. In light of this, seniors may live at risk in their family home without proper support. Wait lists for publicly funded long-term care can be long, and their institutional approach may be better suited to those suffering from very advanced dementia.
Publicly funded home care in Ontario is stretched to the limit and may not be able to meet an individual's needs. The World Health Organization has stated that approximately 8.2 hours of support a day are provided to an individual living with dementia by their family caregiver. There is no way that the publicly funded home care system can provide the same care in a couple of hours a week.
In view of this gap, ORCA engaged in research with the Rotman School of Management to look at what other countries offer seniors and others requiring ongoing care and support. We found that governments had instituted a wide variety of solutions that put the control of care directly into the hands of individuals and their families.
Our recommendation is that the federal government work with the provinces to explore a solution that would provide flexible funding to an individual living with dementia and their family so that they can choose the support services they need. Each person and their caregivers will have different needs and desires and should have a choice in how and where they are cared for. The government should ensure that individuals have the resources to choose what is best for them when faced with the challenges that coincide with aging.
In closing, I would like to highlight three points.
One: That congregate living settings such as retirement homes are an integral part of the continuum of care and can provide the services and programming that seniors living with moderate to severe dementia need in order to live meaningful and engaged lives.
Two: That staff training and skills are essential to ensuring a supportive environment for those with dementia and implementing their care from a person-centred approach.
Three: That we all need to work collaboratively to find affordable solutions that are respectful of the choices, needs and dignity of seniors living with dementia in Canada.
I thank you for your time today, and I look forward to your questions.
The Chair: I will turn to, from the Alberta Seniors Communities & Housing Association, Ms. Irene Martin-Lindsay, who is the Executive Director. Please make your presentation.
Irene Martin-Lindsay, Executive Director, Alberta Seniors Communities & Housing Association: Thank you very much for the opportunity to be here. I will take that opportunity to share our perspectives and perhaps provide some input into your report on dementia in Canada. It is really encouraging to see the collaborative approach that has been taken.
We represent the providers of independent and supportive living for seniors. Our members serve approximately 30,000 individuals, which represents close to 70 per cent of the market here.
In Alberta, all supportive living, where there are meals and/or housekeeping, must be licensed. In Alberta, seniors' housing includes public, not-for-profit and private residential options. Some of the options are subsidized by provincial and municipal levels of government. What that means is that they target the lower income Albertans. There are very long wait lists for subsidized options in most communities.
The residential dementia options can also be accessed through the health system if the provider, which could be from any sector, has a contract with Alberta Health Services to deliver care.
While the funding and subsidy options are different here, we also provide residential, non-institutional housing and care choices for seniors. There are many different service levels and packages to provide that integrated, person-centred service that is really required to help people age well in the community of their choice.
While we are a relatively young province, the staggering numbers predict that we will have 225,000 Albertans potentially living with dementia by 2043. While home care, along with family and friends, can support a person in the early stages of dementia in a single family home for some time, it's not a long-term solution.
As my colleague Laurie from ORCA mentioned, residential seniors' communities offer a viable option for seniors who are frail, either mentally or physically, and who need more support. We do provide that safe, welcoming environment where they get to direct their activities and how they live.
Laurie also provided excellent examples of the type of personalized services that can be provided in private care options. This can be difficult in the funded spaces because, once the medical and clinical standards step in, it really doesn't encourage appropriate dementia care.
The focus in our members' residential options is really on the well-being of the whole person, not just their medical needs. This means programs are very flexible and person-centred, with active input from the resident and their family.
A number of our members are piloting the Butterfly home care model, and in just a few months people are thriving. They are taking less medication and becoming more capable. I think that's what we'd all want for our loved ones.
Canada needs more research on models and best practices to support quality innovations that will be critical to meeting future needs.
Laurie also talked about the importance of education and research, and we couldn't agree more, which was why we partnered with ORCA on the e-learning platform so that we can offer tutorials on these very best practices to the front- line folks who are delivering services. It is our hope that we can continue to grow that and help us all provide the best services to Canadians living with dementia.
Just to restate, because it's so important, if we get this right, we can postpone or avoid the need for people to move into that institutional care that is on no one's bucket list.
Access to programs should be equitable across Canada, and not only for those who can afford to pay. We have an online seniors' housing directory for the province, and many adult children have learned which provinces offer more affordable services and have relocated their parents accordingly. A move such as this is extremely difficult for seniors living with dementia, and while our system here is different, we would be open to exploring a solution that would provide flexible funding to the individual and their family. We believe this would really empower seniors and families to have choice and, as further stated in our noble cause, a life of purpose wherein they are honoured, valued and respected.
Here in Alberta, the provincial government is working on a dementia strategy and action plan, and we are certainly participating in that work. We also have a dementia advice line, which is accessible through Health Link. When you see those things, it would be great if we had a hub of dementia support best practices to enhance services and avoid duplication.
Many Canadians suffer on their own for a long time due to the negative media image of care facilities. It would be really beneficial for all Canadians if the great stories were told. We see so many times that our programs have given quality of life back to the senior and their families. However, one bad media story or one incident of something that hits the media creates fear in families and has them at risk in their own homes.
I will wrap up with what we believe the ideal role of the Government of Canada is related to dementia, and that would be some type of funding for research, education and best practices, or it could even be coordinating and supporting it.
The second point would be to explore some kind of flexible funding for individuals or families, perhaps even a tax incentive of some sort, and to create a public media campaign to educate and inform the public and hopefully reduce the stigma. I think this is already under way, but support for the specialized, affordable housing for those living with dementia is needed.
We thank you for the opportunity. I welcome your questions.
The Chair: Thank you both very much. I am now going to open up the floor to questions from my colleagues.
Colleagues, since we have a guest by video conference, if you would direct your question in the first instance to one of the witnesses, and then the other can follow up, if appropriate.
Senator Eggleton: Thank you very much to both of you for assisting us today in our examination of dementia.
I will start with Laurie Johnston. I'm curious about just who is served by your 700 licensed retirement homes in Ontario. You say none of them are subsidized by government. You also pointed out that there are long waiting lists for government-subsidized, long-term care facilities. What income level would somebody have to have to be in one of these 700 homes, or what is the average monthly cost for people?
Ms. Johnston: A lot of people actually don't have great incomes to live in a retirement home; they're living off their assets. That is a point that I would like to make.
In terms of average costs, I have some prices for Ontario. For example, a one-bedroom unit in independent living with supportive services available is about $4,000 per month. For memory care, a studio is close to $5,000 per month. Those are current averages in Ontario.
Senator Eggleton: Do they include meals?
Ms. Johnston: That includes meals. The memory care would be an all-inclusive package.
Senator Eggleton: I was going to ask you more about the memory care, but I'll leave that for now. I want to ask you about a couple of controversial things. I'll ask both of you about this.
We did a study at this committee on prescription pharmaceuticals, and one of the things we heard about from witnesses was increasing off-label use of antipsychotic drugs by seniors. A lot of this related to nursing homes, for example. They were being given these drugs to help keep them quiet and in reasonably good order, because some of them can get quite violent, which is actually the second part of my question.
What do you do about the use of antipsychotic drugs in your organizations? What do you do about violence? With dementia, there are many cases where a lot of violence occurs. How do you deal with that? Do you have special facilities within the homes where you can separate people who are in a violent state? How do you handle those two things? That's to both of you.
Ms. Johnston: In terms of the medication, in a licensed retirement home, you are required to have a contract with a pharmacy to oversee all of the medication that is ordered for residents living in the retirement home who are receiving supervision for their medication. The pharmacies are extremely proactive in working to monitor medications, which is similar to the long-term care sector. They work with the home and with the physicians to ensure that medications are being administered appropriately.
In terms of managing people with difficult behaviours, this is something that will become an increasing issue as people continue to age in place. As the waiting lists for long-term care beds continue to grow, there will not be places for people to move on to. There are requirements in Ontario for all staff to have training in behaviour management, and that is something that has come through with the Retirement Homes Act in Ontario, and that is something that our association provides to front-line staff through our e-learning platform on behaviour management on how to de- escalate a situation that is happening.
There are some differences in retirement homes versus long-term care. One example would be residents are able to close and lock their doors in retirement homes. This is not the case in long-term care, which accounts for some of the terrible tragedies that have happened in long-term care in the middle of the night, for example. It is an issue, and it's a growing issue that we will need to monitor.
As my colleague Irene mentioned, we need to work collaboratively on what the best practices are for managing behaviours. How can we do this in a humane way? We do believe in the programs that our members are developing. Irene mentioned one of them, the Butterfly Household Approach. There is PIECES and Montessori — a number of different programs. They are very focused on the individual.
When I talked about the music program, for example, this is something that's being widely adopted. When a resident moves into a retirement home who is suffering from advanced dementia, they find out what that person's favourite music was back in their youth and put together a playlist and use music to calm the person down and bring them to a place of happy memories. They can use that to get somebody's day started properly. They can use that in order to get them through a difficult period.
It's that sort of research that is happening that we need to use everywhere and move toward a more humane approach to dealing with dementia. I'm not sure if that answered your question.
Senator Eggleton: Oh, yes. Thank you.
The Chair: You wanted Ms. Martin-Lindsay to come in on this as well.
Senator Eggleton: Yes.
The Chair: Please, Ms. Martin-Lindsay.
Ms. Martin-Lindsay: Sure. I don't have that much to add, but it is quite interesting. The one difference is that, in the private care centre here in Alberta, you would not need to have an approved pharmacy. That would be pure buyer beware on the part of the individual.
What we have found, though, is that, with all of those programs, if they are done properly, they can reduce the use of antipsychotics quite significantly and really engage the people and bring them out in a way that brings back those core memories, and that also reduces the violence. So it's training, training, training so that you have the very best, most qualified people helping to manage those behaviours.
Of course, as to those locked doors, I think that I would want that for my loved one as well. So that's just one little supplement to what Laurie said.
The Chair: Just before I turn to Senator Stewart Olsen, Ms. Johnston, I'd like to follow up on your indication that every site is required to have direct involvement with a pharmacist with regard to the prescribing of any medication that is to be used by a resident.
Ms. Johnston: This is for homes where the residents are receiving medication support. In independent living, residents who are not having any of their care needs looked after would not. They could do their own.
The Chair: This is where the institution is managing —
Ms. Johnston: The residents. Yes.
The Chair: My question really is: Do they use a single pharmacist, or would there be a variety? Is there some single individual who has knowledge in the area and is aware of all of the medications that a given patient is taking?
Ms. Johnston: That's correct.
Senator Stewart Olsen: Thank you for being here. Ms. Martin-Lindsay, I want to pass on to you our sympathy on the Fort McMurray fire. Just to let you know, in Ottawa, we're watching this really closely. In the West, sometimes you think we don't know, but we're sure following this one a lot. So all the best.
I will just start my question. I would really like to understand better. Ms. Johnston, in the retirement living homes that you're describing, can you just give me an example of the living arrangements for someone with moderate to severe cognitive disabilities? Start at breakfast and just tell me how it differs or tell me how it goes usually.
Ms. Johnston: A very large percentage of people living in retirement residences do have some kind of frailty. They are there because of either isolation in their home or because they have physical issues or need mental stimulation or cueing.
For example, somebody living with moderate dementia in a retirement home could very well be in the general population but just needs, for example, a reminder to go to the dining room for a meal or a reminder that an activity is happening that afternoon and, "Would they like to participate?'' It could be that little. They're able to move around. They're able to do what they want and have family and friends in to visit. They can go out on outings, with an understanding of what their capabilities are, to enjoy those outings safely. They're able to live a very full life.
As the disease progresses, there will need to be additional supports, and, at a certain point, if someone is at risk of wandering, for example, there may be a need to transfer that person to a locked part of the building, where the rooms are not locked but the entrance to that area of the building is perhaps locked. There are also bracelets and that sort of thing that, in some areas, are used that would signal to staff, when somebody is getting close to an exit door, that somebody is exit seeking
Senator Stewart Olsen: Do most of your retirement homes have the locked areas?
Ms. Johnston: I tried to get that number before I came here today, and I don't actually have that information. The retirement home registry is still in its infancy in Ontario. It is a growing area, and that I will say for sure. Certainly, as residents are required to age in place because there isn't anywhere else for them to go, more and more retirement residences will be offering those programs.
Senator Stewart Olsen: How is your staffing organized? Do you have almost one-on-one care, or how do you organize that so that they have some supervision?
Ms. Johnston: There are definitely higher levels of staffing on care floors and memory-care floors, and the staff are more highly trained in specific areas of monitoring and providing for the needs of the people there. Interestingly enough, some of our leading members, who are creating programs and making headway in the world in terms of providing programming, will actually look for staff who don't necessarily have nursing training. They're looking for the person, and the ability of that person to care and give is the number one priority.
Senator Stewart Olsen: Ms. Martin-Lindsay, do you have anything to add?
Ms. Martin-Lindsay: What we have learned here is that, as the stages of dementia increase, the people do function better in a smaller environment, be it six to twenty people, because they have time to get familiar and do some of those things. If they're in a building with 100 people, it's just a little bit overwhelming for them, particularly as they get into the latter stages. Many of our members — and I don't have the number either — are either building or adding a wing to create those types of opportunities.
Senator Stewart Olsen: Thank you very much.
The Chair: Ms. Johnston, if you get an indication of either the existing number or what you're aiming for in terms of percentage across the number of units, could you forward that to the clerk?
Ms. Johnston: Absolutely, I will.
Senator Seidman: Thank you very much, both of you, for your presentations to us this afternoon.
If I might, Ms. Johnston, start with you, you say that ORCA represents 700 or so licensed retirement homes in Ontario.
Ms. Johnston: We represent about 90 per cent of those homes.
Senator Seidman: Right. There are 700 or so, and you represent 90 per cent of the sector.
You talked a bit about your e-system training. I'd like to ask you a bit more about what the regulated standards for professionals and practices may or may not be in the retirement homes. I know that we have heard that, even in the training of nurses and physicians, there is not a lot around dementia. Could you give us some idea of whether there are regulated standards — I know you can speak for Ontario only, perhaps — and what those standards might be in terms of staffing requirements, levels of education, and various processes and procedures that they must be trained in?
Ms. Johnston: First of all, just a reminder again that in Ontario the homes are not subsidized. Labour is an incredible expense, and as you move towards more care, the costs go up exponentially, which is why you will see memory care, for example, or full assisted living costs go up as a result.
Under the Retirement Homes Act in Ontario, any kind of care service must be overseen by registered staff. So any program that's being offered, whether it's a provision of continence care programs, dementia care programs, wound care programs or assistance with medications, there are regulations that support those activities, and they must be overseen by a registered staff.
Training for front-line staff is required, but it is not a standard training. It is something that we've been able to develop, for example, in our e-learning platform. We have 27 different modules, because we are impacted in Ontario by 21 different pieces of legislation, so those 27 modules actually look after the front-line training requirements for front- line staff under all regulation in the province.
We have developed all of that training not just with operators but with subject matter experts — anything to do with emergency planning, for example, fire safety, that is done with the office of the fire marshal; anything to do with care is done with the College of Nurses; dementia behaviour is done with the Alzheimer Society — to ensure it is practical in the retirement home setting but also credible in terms of best practices under any of those organizations.
Senator Seidman: There are various levels of retirement homes and long-term care facilities, but let's speak about the retirement homes to start with. Do they have to be licensed, and if so, do they have to meet certain requirements for certain numbers of professionals and certain services in order to have that licence?
Ms. Johnston: It depends on the level of service that you offer. Different regulations come into play based on the service levels that you offer. Some buildings are for more independent seniors and don't offer memory care, for example, so those regulations will not apply to them.
Senator Seidman: Do you have any relationship with the provincial colleges of surgeons and physicians, the Royal College, for example?
Ms. Johnston: We don't. We are not required to have a doctor on staff. It depends on the retirement home and also where it's situated. Many homes do have a physician that oversees all of the residents living in that home. In more independent settings, for example, residents can keep their own doctors. However, if they are under the supervision of the home for medication, for example, all of those prescriptions would go through the nursing office.
Senator Seidman: Your website lists four different housing options. We're talking now about retirement homes, but you also list long-term care homes, supportive housing and seniors' apartments. What regulations or standards are around that, if any, and what level of care can be provided by these other options?
Ms. Johnston: In the long-term care sector, which is under a different set of regulations, namely, the long-term care act in Ontario under the Ministry of Health, they are a highly regulated sector, and I understand they're the most highly regulated sector in Canada.
There are requirements around staffing and are very prescriptive around how activities happen. The average length of stay in long-term care now is less than a year for new people moving in, so there is a lot of palliative care going on in long-term care. I believe my colleague is presenting, I think, this week from the long term care association, so she will be able to speak to that better than me.
Supportive housing would not have regulations around it.
Senator Seidman: Are they part of your organization?
Ms. Johnston: They're not. The licensed retirement homes in Ontario are part of our association.
Senator Seidman: Licensed retirement homes offer a full spectrum of services, independent and assisted living.
Ms. Johnston: They can, but each home is unique.
Senator Seidman: If I could now move to Ms. Martin-Lindsay, I wanted to ask you a slightly different question because you're from the communities and housing association. Home care and aging in the community has always been of great interest to me. We have talked about the need to transfer funding from acute care, where a lot of it goes, back to the community in order to allow seniors to age in place, as they say. Coming from specifically a housing association, other than budget, what would you say are the necessary requisites to make the transition possible, moving a lot of funding from acute care back into community care?
Ms. Martin-Lindsay: I would think we have some pretty good examples of that here. In some of our settings, the housing provider provides all the hospitality services, but home care delivers the health services, so they come in and deliver home care. They have had to deliver home care differently, and sometimes even 24-hour home care, so you can imagine they are able to keep those people in that setting and out of acute care for a long time just because of that.
Many of the housing providers have also entered into contracts where they directly deliver the home care under standards on behalf of Alberta Health Services. It could be from that higher level supportive living services with the 24- hour nurse to just 24-hour health care aides, and we have many providers doing just that at the community level. We still have high acute care costs here, but it's more of a systemic issue, and I think that allocating those dollars into the community has seen some really good results where it's worked.
Senator Seidman: Are there models? To me, this is really important. Do you have pilot project models that we might have a look at, and if so, would you be able to forward that to our clerk?
Ms. Martin-Lindsay: Yes, I would be happy to, and I could give you two or three different examples, because there are various models.
Senator Seidman: That would be wonderful. Thank you very much.
Senator Merchant: Welcome to both of you. I think I will start with our friend from Alberta to give you a chance to talk a little more. The first question is directed to both of you. When you spoke about the retirement homes, could you tell me what percentage of the persons in the retirement homes are suffering from some sort of dementia?
Ms. Martin-Lindsay: When we last checked, it was 2011 or 2010, and in the supportive living, so where there is 24- hour non-medical staffing, we were at about 70 per cent of the people that had some form of mental health, dementia onset or Alzheimer's.
Senator Merchant: In Alberta?
Ms. Martin-Lindsay: Yes.
Senator Merchant: And in Ontario?
Ms. Johnston: I would agree that the numbers would be in that range.
Senator Merchant: That's a high number.
You spoke about the waiting lists. Is the waiting list you gave us the one simply to get into a retirement home? Is that list kept separately from people that are getting into the retirement home because they are suffering from a form of dementia? Do you keep separate lists, and do you know if one list is longer than the other?
Ms. Johnston: In Ontario, our long-term care system is managed by the Ministry of Health, and there is a very specific way to get access to a long-term care bed. The waiting lists are two or three years long currently. Retirement homes, being private pay, typically do not have long waiting lists.
Senator Merchant: Is it similar in Alberta?
Ms. Martin-Lindsay: No, it is a bit of a different system. If through the health system you are realized as needing full 24-hour services because you have dementia, you will get a list of places. Some of them might be long-term care. Long- term care is governed under the Nursing Homes Act here, which is over 30 years old and requires review. Designated supportive living care, which can cover dementia care, is a setting where you pay for your own medications and supplies. In long-term care, it's all paid for. Families will often decline the one where they know they have to private pay some of that.
The wait is kind of a strange system. You might be stuck in acute care for three months or twelve months, but they don't know how to properly manage that wait list yet, if I were to say it honestly.
Senator Merchant: In terms of the cost, in Ontario you stated there is no government help. Are there some programs for veterans? Are they subsidized in some way by the federal government? I know Veterans Services sometimes helps people for different reasons in Saskatchewan. Are people moving from their own home into a care facility covered through Veterans Affairs? In Saskatchewan, I'm not sure if it's a percentage of the cost or a certain amount, but I know they pay something. Would that be the same in Ontario and Alberta?
Ms. Johnston: Yes, I believe that's a national program.
Senator Merchant: So veterans are getting some help.
Ms. Johnston: They are getting flexible funding which allows them to choose how they can spend that funding, whether to bring in supportive services and remain at home, for example, or to use that money towards their accommodation and care costs in a congregate setting like a retirement home.
Senator Merchant: They might also be helped with their medical costs in that case?
Ms. Johnston: I believe so, but I'm not an expert on this.
Senator Merchant: Is there a country that would serve as a model for Canada where you feel there are good programs? Are there countries that you look to as models?
Ms. Johnston: When we did our scan, and I'm happy to share that information on the Rotman's report, we did a worldwide scan. Interestingly enough, Canada is one of the only countries in the Western world that does not have flexible funding. There is a wide range of programs. Some of them have been around for 30 years, supporting seniors.
In Germany, all citizens at the age of 40 are required to start paying into a long-term care insurance fund. That has been going on for quite some time, so as a result, they have the funds available to support people with flexible funding.
They do have means testing as well in a number of these nations to determine how much subsidy somebody should receive. In France, the individual pays for the costs up front, and then after a certain period of time the government picks up. So the government is sort of hedging their bets a little bit on that one.
We are looking at different programs. Nothing is identical to Canada. As we've stated, it is also very different between Alberta and Ontario.
The Chair: Ms. Martin-Lindsay, do you wish to add to that in terms of a specific country for reference?
Ms. Martin-Lindsay: We have looked at some of the other countries, I think the Netherlands and the U.K. There are some interesting models everywhere. We are finding that even from province to province, some have full means testing. They set the rates and the rates could be lower than the actual cost. Alberta does not have that. It makes it a very incomparable marketplace, even from province to province. You will also notice that our language is very different. So there is no means testing. There is some income testing on the subsidized programs, but no asset testing. There are other countries that look at all of that, and certainly we have not done that on an equitable basis.
The Chair: Ms. Johnston, would you please forward that report that you mentioned to the clerk?
Ms. Johnston: Yes.
The Chair: Could you clarify and put in perspective your 700 homes within your association? You already referred to long-term care facilities as being a separate concept in Ontario.
Ms. Johnston: Correct.
The Chair: Are those primarily run by the government?
Ms. Johnston: All long-term care homes in the Province of Ontario are subsidized, but they can be private and not- for-profit.
The Chair: But they are part of a collective association in some way?
Ms. Johnston: Many of them belong to an association, but the funding under the Ministry of Health and the Long- term Care Act is very specific to that sector.
The Chair: They're not necessarily within an association, but they qualify.
Ms. Johnston: Correct. We are a voluntary association as well.
The Chair: Those would be the two principal groupings dealing with persons needing some care over time?
Ms. Johnston: In addition to that is home care, so there is a provision of home care as well.
The Chair: I wanted to fit that in. There are some interesting comments.
Ms. Johnston: It's hard to keep it straight.
Senator Raine: My question is for Ms. Martin-Lindsay. You mentioned the Butterfly model. I hadn't heard about that. Could you explain what that is?
Ms. Martin-Lindsay: There is some more information. We had three pilots start. Basically it comes out of the U.K., and Dr. Sheard is sort of the creator of this concept. It brings all the elements of home into the care — whether it's your personal items, or you prep your own toast and peel your own potatoes, all those things that break almost every regulation in those standards because they want everything to be done to the clinical, correct, standard way. What we have seen is people have started to come out of their shell and really reduce their medications.
I toured one of the sites a few weeks ago. It is so touching and inspiring. The family feels like they have their loved one back. We need to look at another way of doing things that may not fit all the rules perfectly but fits life perfectly.
Senator Raine: This program would be in a residential care facility but would make it more like a home.
Ms. Martin-Lindsay: Yes. There might be little throw carpets, which are a major no-no and would make you fail your inspection, those kinds of things. But it is what means something to that person and brings their memories back and makes their life worth living.
Senator Raine: How strict are they on things like carpets? I'm a caregiver for my sister, and when she moved into the residential care side, they said she can't have carpets on the floor. She has beautiful Asian carpets. That's her life. I asked for just one or two. They said, "Well, okay as long as we can move them easily to clean under, it's not a problem.'' So I was really happy, because for her, that made a huge difference. Is that just something that has been adopted because it's an easy thing to do rather than the sensible thing to do?
Ms. Martin-Lindsay: It relates to so many things. We can be over-safe. If you look at all the fall prevention programs, carpets are a big no-no if you are trying to prevent falls. There is a real balance between how much risk we choose to live with, in what environment and to what end. We make those choices in our life every day, but when they're made for us, how far do we go? And we've gone pretty far.
Senator Raine: The environment that people are living in has become perhaps too sterile and it's more important to have a dirty towel hanging on a rack than towels that they don't recognize.
Ms. Martin-Lindsay: Yes.
Senator Raine: Thank you very much. I appreciate that.
My other question was for both of you. To me, one of the beautiful things about our decentralized government is we have a lot of best practices being found out. One province might try one thing and another might try another thing, but then the question is how to share those best practices. Is there a way in the residential care sector to share the best practices on a national level? How is that done, and could we do that better without being too prescriptive? I agree that's probably not the way to go. How do you in your industry, both of you, share best practices from one province to another? I will ask Ms. Martin-Lindsay to go first.
Ms. Martin-Lindsay: I will see if I have gotten this. We tried to start a national alliance, probably 10 years ago, but what happened is because we have not been able to get any resources behind it, it kind of fell by the wayside and it's something we do off the side of our desks. We have colleagues in B.C. and Quebec, as well as in some of the Maritimes. I have tried to connect with Manitoba, but there is no formal mechanism. When it's one of those things that's nice to happen but when you're already really busy, like we all are, it doesn't necessarily always happen. We had formed what was called the Canadian Alliance for Seniors Living, but I would say it has been stagnant since 2010. If there was some sort of hub and somebody pulling that all together and making sure that we shared and had it all in one central hub, it would be fantastic.
Ms. Johnston: I agree with you, Irene, on that sort of thing, but where there is an exception is the partnership that we have with Irene's association on our e-learning platform. They launched it to their membership February of this year. It's one of a kind for senior living not only in Canada but possibly in the world. Housed on that, for example, is an operations manual that has over 400 policies and procedures pertaining to all manner of standards within retirement senior living and tool kits and best practices around behaviour management and crisis management. We are going to be developing in the next year a dementia program toolkit to support especially the smaller operators who do not have the resources of a national chain, for example, to develop a fabulous program. This is the sort of thing that we will work with Alberta on to ensure that we don't waste time or resources.
We also believe very strongly that if we don't work together, there is risk of more regulation, which will not only prevent you from having area rugs on the floor, but they'll prevent you from lots of other things as well. If we look at long-term care in Ontario, for example, it is so prescriptive that it doesn't allow for resident choice. It doesn't allow for somebody to have a bad day or a difficult day because of the structure that has to be in place and the checkmarks that have to happen regarding somebody's care.
Senator Raine: Do you think an organization like CARP, which is an advocacy group for seniors and has national media, could have a little column that talks about best practices?
Ms. Johnston: It could very well be there, and I can't speak on behalf of CARP. Their membership tends to be the adult children, so certainly education on what's available and how to navigate I think would be extremely important for CARP to share with their members. We are also having very preliminary discussions with them about doing some polling, perhaps, to understand what seniors actually want in terms of having input into their own care.
Senator Raine: Thank you.
The Chair: To follow up that question with regard to sharing practices, would information on the Butterfly approach appear on your collective awareness?
Ms. Johnston: It hasn't at this point. In Irene's situation, it is in pilot, and a number of our members are using other programs. The Butterfly approach is one of them. There are half a dozen at least that I think we're aware of that different members of our organization are customizing to suit, first of all, their physical plant, but their philosophies as well. There is a Montessori program, for example, that has international recognition.
The Chair: So my question really is: In each of those variations, and in the primary one I was referring to, if something stood out, would that appear in any kind of collective awareness bulletin?
Ms. Johnston: We're hoping that over the next year we will start putting together a toolkit that would help an operator create a dementia care program incorporating the best practices that our members are evolving right now.
Senator Nancy Ruth: I was going to ask about the Butterfly model too, so thank you, senator, for doing that.
Where do people go? We often hear demand of governments to provide monies for housing for the homeless or for low-income workers who need to be in the centre of a city to service hotels or something else, but we don't usually add to those demands that it be for seniors, other than the odd seniors. I'm wondering, first, what you think about adding that word into the homeless category, and you said in the retirement homes there is some turnover. Are these people dying, or are they going on into other facilities with more care? Where do they go?
Ms. Johnston: Either or.
Senator Nancy Ruth: Either or, okay. What about the business of homelessness and seniors?
Ms. Johnston: Again, if you heard the prices that I was quoting in Ontario, in an unsubsidized setting, the homeless are not going to be moving into a retirement home. We are aware of a program in British Columbia called the SAFER program that is through their housing, and it can offer currently up to $750 a month in subsidy towards accommodation for someone.
We know that in Ontario the Ministry of Housing has just received funding from the federal government for seniors' supportive living. This is the first time this has happened, and it's something that our association will be talking to that ministry about in order to perhaps explore with them how it could be used in flexible funding to help people who are at great risk in their homes move to a more supportive setting.
Ms. Martin-Lindsay: Our system is quite a bit different. We probably have the only public seniors' supportive living in Canada, which is the Seniors' Lodge Program, and many of those providers either partner or work with those who directly deliver social housing and the Housing First program. Many of those are seniors more and more, particularly with our economic situation changing, but even when our housing situation was so bad and there were no vacancies, we had homeless seniors. There are groups in the large centres that work on the Housing First file and try to make sure they get the appropriate accommodation, and that is funded with both federal and provincial funds. The Housing First program includes seniors.
Senator Omidvar: This conversation has largely been about institutionalized care and operators who work in institutionalized care. I'm wondering whether there is an assumption that, at a certain point in a senior's life, when they have dementia, that they must be institutionalized, or is there recognition that in fact some will choose to stay and some families will choose not to put their seniors into institutions? I know a lot of this is cultural, and even when they should, they don't. That does result, unfortunately, in neglect and in seniors' abuse, which has been documented.
Is there anything in either of your platforms that thinks about supporting families who choose to keep senior citizens at home? Are there toolkits and resources for them beyond standardized home care, which I have some experience with? It is so spotty that, frankly, it's not worth accessing, because you get no continuity of support. You don't get the kind of care that you would want. As a family, if you want to keep the senior citizen at home and look after them, with or without dementia, you're forced to go to personal support workers and, again, that is spotty. Do you have any experience or literature or research that would comment on that?
Ms. Johnston: The Rotman report will comment on that. When we advocate for flexible funding, it's not just to support people moving into retirement homes but to support people to choose. I don't think Italy is referenced in the report, but I do know that they can actually pay for nannies to move in with a family to help support somebody with increasing frailty needs. There are incidents as well where family members can be paid with the flexible funding to provide the support, which of course would make a huge difference.
We are not advocating only for our sector. We are advocating for choice and for people to be able to choose how they spend that money.
In Scotland, for example, they get a Visa card. If they choose to direct their own care, that is topped up monthly and has predesignated recipients for payment on that Visa card so you can't use it for cash. The Visa card keeps a record of who is being paid, and it can include family if that is part of the plan that has been set up. Some very innovative things are happening in other countries that allow, again, choice, which we believe should be everyone's right.
The Chair: Ms. Martin-Lindsay, do you have anything to add to that?
Ms. Martin-Lindsay: I would certainly concur with everything that Laurie has said.
As the seniors' housing the side of the retirement community, whatever language we're using, we've also been reaching out a bit more into the community to see if there is a way we can support some of these people that are alone and isolated because many of those family members do work. It has been hard to find a sustainable model to try to reach out in that way.
I was at the national conference in the U.S. last fall, and they talked about clubs of networking where you can get out and provide those services into their homes. Community by community, we need the figure out how to offer those wraparound services in where they choose to be and even how to support the family.
Senator Omidvar: We need to get that report.
The Chair: We asked for it earlier. To help you, perhaps, with today's witness group, we're looking at the organizations. This is a study we have been doing for some while and we're looking at all the aspects. Your question was excellent, but with today's witnesses we are trying to get that collective information — just to put it into perspective for you.
Senator Omidvar: I will stay in the box.
The Chair: No, but I wanted you to know that we are looking at the issue of individuals. In fact, there is a lot of sentiment for trying to get at the question that you asked, namely, to get people into their own homes and to help in that area. Your question is excellent and it's one we're trying to pursue.
Before I move to the second round, and because we have particularly you, Ms. Johnston, looking at 90 per cent of 700 retirement homes, in which, as you have already indicated, a significant percentage of them have a degree of dementia in evidence, I'm sure you're also dealing with people who have other generally age-related issues, such as MS, Parkinson's and so on. Do you have any sense about whether the same kind of facility is able to handle people suffering from dementia, Parkinson's or MS? Is the same retirement home complex within a certain kind of community able to handle those symptoms?
Ms. Johnston: It would depend on the retirement home. They are specific in the services they offer, and the agreement you sign when you move into a retirement home is specific as to what the services and capabilities are. The resident signs that they understand that if at some point the home is no longer able to manage a particular situation, they will have to seek help elsewhere.
You've probably heard the term "co-morbidities'' many times in these meetings. The longer you live, the more likely it is you are going to have several things that are working against you — Parkinson's and Alzheimer's, for example. So, yes, we are becoming increasingly sensitive to that and to the need to look after people who have combinations.
If you look at how many people are living to 100-plus now, even 10 years ago that wasn't happening. In real time, retirement home operators, like long-term care operators, have to learn how to manage these combinations of illness, which can be very complicated.
The Chair: I'm asking you because we have not been really focusing on co-morbidities at this stage, but we are looking at trying to develop recommendations on a national dementia strategy. Since you are the first group that deals with a large number of housing units through an organization, I wanted to get a sense from you. If after you leave here you think about any issues that are contraindicated in terms of co-morbidity or cohabitation things in a community focusing on dementia or positives — any specific aspect — please let us know. If we make recommendations dealing with dementia, a significant number of people will have co-morbidities.
Ms. Johnston: There is research being done in Ontario, both through the Baycrest Centre and the Schlegel Villages and its partnership with the University of Waterloo. I'm not sure if you're aware of those and if you have access to some of the work they're doing but, again, it's in real time. I understand that some of what they're conducting is leading in the world.
The Chair: We will have Baycrest so we'll follow up.
Ms. Johnston: I will get you the name of the other one, but Schlegel Villages just announced a new partnership that opened last year with the University of Waterloo, and they are dealing specifically with Parkinson's disease and strokes. Again, there is an opportunity there.
The Chair: It's not the primary focus of our study.
Ms. Johnston: But they impact each other, absolutely.
Senator Eggleton: I wanted to ask, Ms. Johnston, about the memory care program and memory care units you have. Is this a standardized program that you developed as an association that is implemented by all the facilities that come within your membership?
Ms. Johnston: No. Some homes have built a dedicated wing or floor. There are some stand-alone memory care retirement homes in Ontario, but very few. There are far more in the U.S. The different operators have developed programming akin to their philosophies and their mission and vision.
There is variety, but what I can say they have in common is that they are person-centred, which is very different from the institutionalized model. It's all about joining that individual in their day, in their reality, and trying to take advantage of the knowledge they have of that person to create the best day possible. It's very specific to the individual as opposed to, "It's nine o'clock. You have to eat now, and then you have to get dressed,'' and you have to tick a bunch of boxes.
Senator Eggleton: Is the general pattern that they would be put in the separate memory care units you mentioned?
Ms. Johnston: When people are at risk of wandering, especially if the front door of the building is unlocked, that is something that will often trigger a move to a secure unit.
Senator Eggleton: But people with milder forms of dementia would be integrated with the rest of the population.
Ms. Johnston: Absolutely.
Senator Eggleton: We heard of a program in the Netherlands called memory cafés. Have you heard of that? Do any of your members operate that kind of facility?
Ms. Johnston: I'm not 100 per cent sure. I know there is one in the U.S. as well. There are different models.
The Chair: He's asking specifically about that one.
Ms. Johnston: I don't have the background on that one in particular.
The Chair: Ms. Martin-Lindsay, do you have any experience in that area?
Ms. Martin-Lindsay: There is a full village in the Netherlands that is actually a dementia village, where there is a café, shopping and everyone there knows, so people come and buy, and they put it back on the shelves later. They live their lives in this community and they're really quite happy. They pool them together as well in houses based on their lifestyles, so it's the kind of artsy music lover versus the others, but I do not know if that's the same.
The Chair: The memory café started in the Netherlands and came together, literally, in a café, with discussion of various issues among the people there. It turned out to be such a success that it spread to the U.S., and I picked it up because there are some starting in New Brunswick. It seems to be spreading like wildfire, shall we say, and we've had some discussion with the international witness we had. Senator Eggleton's question was whether it had hit Alberta or Ontario yet.
Senator Seidman: Ms. Martin-Lindsay, I'd like to come back to your closing remarks, where you talked about the ideal role of the federal government. You mentioned two things that I find particularly interesting. One is a public media campaign in to educate Canadians, and the other is flexible funding for individuals, families and tax incentives.
As well, Ms. Johnston mentioned that the Rotman School of Management has come up with some interesting and innovative approaches to find ways of paying for this kind of care.
Both of you talked about the expense of this, so I'd like to hear from you whether there are, in Canada as things stand now or in other countries, ways of encouraging citizens to plan for and pay for these kinds of care needs.
Ms. Martin-Lindsay: One of the things we've talked about a lot at the government level is people feel very much it is their entitlement to have free health care and be taken care of when the time comes. We built that culture, and so to change and shift that to, No, if you get this or that disease, you need to take care of that yourself,'' is very significant.
If we have any plans of changing it, we need to start those conversations now. In that spirit of entitlement, we have the generation of seniors today that worked hard to give the money to their children and not to spend it on their care, whereas in some provinces, they do have to spend it on their care, so we already have an uneven system.
If we could create public awareness around that as well as the quality supports that are out there, then people could make well-informed decisions, and maybe the next generation, or at least the ones coming behind, could start to realize, "No, we can't afford to pay for all of this. There isn't enough money.''
Ms. Johnston: I agree. One of the things we're asking for, for example, in Ontario is a transparent basket of services. Right now people don't know if they're eligible for even an hour of home care a week.
We're saying there needs to be set standards that people can believe in, understanding that, for example, if you make this much money, you're going to get nothing, or you're going to get this amount, so that families can actually plan and count on it. Right now, they don't have that ability to do that, so many families are in crisis. When they leave hospital, for example, they think they're going to get supportive services at home, and two weeks go by and no one has shown up. This is the kind of thing that is not sustainable.
Senator Seidman: You're both talking about public education and that Canadians need to know the facts and issues. I do think, Ms. Martin-Lindsay, you're quite right that we have this attitude that health care is free, but actually we, the taxpayers, pay for it. It is not free.
I'm thinking now as a federal government legislator with the Parliament of Canada. Are there any interesting tax incentives that you have come across that would help Canadians plan and save for future needs?
Ms. Martin-Lindsay: From our side, we have not done nearly as much work on that as we could have, just because there are so many other things to focus on. I know that in some of the preliminary work that we've looked at when we looked at moving to a whole means testing system here, there were other jurisdictions that did have some form of savings put towards long term care that gave you the tax break in real time, now, similar to the RRSP system. I cannot recall where they were, however.
Senator Seidman: Thank you very much.
Senator Merchant: During our study, we have, several times, talked to people about those who live a little bit farther out. You spoke about the 700 homes that you're associated with. Are these mostly located in urban centres, or do you have some that are a little more remote? Are there smaller ones? And when it comes to indigenous populations, are they coming to these homes? Have you had some interaction with them? I'd like to know how it's working in both your provinces. Maybe we'll start with Ontario first.
Ms. Johnston: Our smallest member has only nine suites and it is in a small town. Under the Retirement Homes Act, you can actually be as small as six suites and be under the legislation and have to be licensed if you provide care services.
We represent people in towns that I've never heard of before in Ontario, and we know that it's very important that those homes be able to operate, because otherwise it means somebody has to leave a community and sometimes move hundreds of kilometres away if anything happens to shut that home down. That is one area we advocate strongly to government about in terms of making regulation affordable for those operators to stay in business and to provide vital services.
In terms of indigenous people, I am not aware of retirement homes that are specific to indigenous people. There might be some in Ontario, but I do not know.
Ms. Martin-Lindsay: Certainly I can think of about three or four right off the top, and they are typically on reserve for indigenous people, but many of our remote and rural communities have everyone all together, which is a challenge in and of itself.
Our licensing for supportive living is for four or more, so we have members with as few as four people, up to a few hundred people in one building. You do have all those variations, but where we're seeing the vacancies is in those small rural, remote communities where the doctors have left, so seniors are moving away and they don't feel comfortable. We've had doctors' clinics added on to those buildings where they come in maybe once a week. We've had to do some pretty creative things to try to keep people in those smaller rural, remote communities.
We've started some as well that have various segments, like the Mennonites. I don't know if you have those in Ontario. We're seeing many more cultural niches come forward as the population ages and lives that much longer.
Senator Raine: I want to ask what the situation is for end-of-life care in the facilities that your organizations have, so palliative care. When it becomes evident that the person is passing away, what is the transition? Can they stay right until the end and is the care level different? How does it work?
Ms. Johnston: Again, it's something that has been happening in retirement homes for many years. The home will work with the family to try to determine what that end of life looks like. In many cases, the publicly funded system will offer a lot more help and support to ensure that the family and the home are able to manage the best situation. Some people prefer to go to hospice. There are different things that come into play, but retirement homes have been providing end-of-life care for a very long time.
Ms. Martin-Lindsay: We have a very similar system. If the housing provider does not provide the care, they will often still try to honour the choices of the individual and their family and will work with home care, and actually they will palliate where the person wants to, as much as possible, and we are getting better at that. If they want to stay in their one-bedroom suite or in their place, they will bring the supports to the person where possible. Sometimes the family panics and they end up in hospital and it is harder to get them back, but as much as possible the system does try to honour that choice right where they are.
Senator Raine: In other words, if you are in a residential wing of a facility where you have your own room, but you can still then have palliative staffing and help, it's probably a little higher level of service that would be required but it could be delivered there?
Ms. Martin-Lindsay: Yes.
Ms. Johnston: It is their home.
The Chair: That's a very good point.
Thank you very much. These have been very important contributions to us. As I indicated earlier, we've been trying to get as broad a spectrum of input into this issue as possible, and your knowledge with regard to a large number of housing units in an association and the various natures of them has been extremely helpful to us in the different environments.
This last discussion is an example of the complexity of the issue that we're dealing with here. We're focusing on the dementia aspect, but it then gets into, as we discussed a moment ago, co-morbidities and also end-of-life care issues, which would be a general kind of aspect in terms of how we deal with it.
I think of several of the things that you have said here. For example, Ms. Johnston, you said there isn't even a kind of standard package to inform people of what the various financial support availabilities are, depending upon your circumstance and where you're going. That gives a clear indication of how far we are from a national strategy with regard to dealing in this case that we're focusing on with dementia.
I want to thank you both very much for being here and for the clarity and the experience that you brought to the answers to the questions that my colleagues have asked and, of course, once again I want to thank my colleagues for the questions they have put. With that, I declare this meeting adjourned.
(The committee adjourned.)