Aging in Place with Dr. Derek Manis and Dilys Haughton
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Does assisted living adequately balance older adults’ need for independence and regulated medical care? In this episode we shed light on assisted living—its benefits, shortfalls, and why so many Canadians prefer to age in place.
TRANSCRIPT
Misty Pratt
Most people want the same things as they get older, to stay in their own homes, maintain their independence and to rely on trusted caregivers when needed. This is called aging in place, and more Canadians are doing it. Assisted living facilities offer a balance between independent living and support with health or personal care. But as the population in these facilities grows, people report significant health challenges, difficulty accessing specialist care, and 6.4% have no family doctor. While long-term care facilities have received an enormous amount of attention since the pandemic, and rightly so, the population in assisted living remains largely invisible. It’s been called the “dark matter of long-term care”. I’m your host, Misty Pratt, and this is In Our VoICES, the podcast that brings you the health data without the drama. Joining me today is Dr. Derek Manis, a researcher who uses healthcare data to examine models of care, health equality and health outcomes among older adults in residential care. We’re also delighted to welcome Dilys Haughton, a patient partner, advocate and someone who has cared for a parent in assisted living. Welcome Derek and Dilys to In Our VoICES.
Dilys Haughton
Thank you.
Derek Manis
Thank you so much for having me.
Misty Pratt
Derek, let’s start with some definitions. I think when people imagine getting older and needing care, they tend to imagine long-term care. So, living in an institution, receiving round the clock help. Can you define what assisted living is?
Derek Manis
So, if we think about the spectrum of home and long-term care, we have home care on one end, where someone might receive care from a nurse or some other practitioner that comes into their home or a family member or friend, and then, as you described, sort of at the other end, where we have this institutionalized residential care for people with health care needs that would necessitate 24 hour access to nursing and personal care, which might include like really advanced dementia. And so assisted living sort of takes up this space in between the two. So, it is mostly a private home where individuals pay rent, room and board but then there’s also health services that they can also purchase to help support their independent living.
Misty Pratt
And so is a retirement home then the same as assisted living, because I kind of imagine a retirement home as like, I’m in this nice home with a golf course, and I’m golfing every day. And so, is that kind of a similar sort of thing?
Derek Manis
Assisted living captures this huge gradient of services. While it’s often marketed as sort of this lifestyle, it is a way for many older adults to be able to maintain their independence but still get the care they need. And so if we go back to 1984 when we had the Canada Health Act that provided sort of first dollar health insurance coverage for medically necessary hospital and physician services home and long-term care was deemed as extended services, and those services were all sort of up to each individual province to decide whether they were going to cover them. And so, at that time, if someone had a really significant event like a stroke or a heart attack or they had cancer, they didn’t live for many years beyond that. And so, the need at the time for a lot of home and long-term care for older adults did not necessarily meet the needs of the health system, then. Most people are going to live into older age where they need home and long-term care but it’s very politically fraught to open up the Canada Health Act and and think about ways in which we can have the health system meet the needs that everyone’s going to have at some point.
Misty Pratt
How is assisted living funded, at least in Ontario? And it sounds like this is put on the individual, the older adult, who has to pay for this themselves if they’re not accessing the home care or the long-term care.
Derek Manis
So, in Ontario, retirement homes or assisted living actually falls not under the Ministry of Health and Long-Term Care. It’s actually under the Ministry of Seniors and Accessibility. So, there’s some separation there, first, sort of from an administrative standpoint. Second, it is all private pay. And even if we think about long-term care or going into a nursing home, if individuals do have the needs to necessitate 24-hour nursing and personal care, they would also fill out and submit their tax records to potentially to go in at little or no cost. But for assisted living, it is completely paid out of pocket. Individuals pay that cost themselves or their friends or family do. In some cases, people may be able to get long-term care insurance, but the premiums for those are astronomical, because insurers know people are going to need to access long-term care later in life. So, the premiums that people pay up front to be able to have money in the pool for everyone are very, very high.
Misty Pratt
So, it sounds like an issue of equity, the fact that you can get into a nicer facility like this if you can pay?
Derek Manis
Yes, but definitely, there is some, there is some of that. Without a doubt, but a lot of it is really rooted in the fact that the healthcare system was never really designed to be able to accommodate such an increase in home and long-term care. Right? Like the core tenant provision was medically necessary hospital and physician services. And there isn’t a statement in there about home and long-term care.
Misty Pratt
That makes a lot of sense. So, are people then who maybe don’t have super high health care needs, but some, and they can’t afford the assisted living facility? Are they ending up potentially then in long-term care, because that is what insurance could cover?
Derek Manis
Yes. So, if we take the case of someone who is lower income or sitting around the poverty line, they can get home care. Ontario does cover home care services, but if it gets to a point where they can no longer live in their home, then, yes, the only other option for them would be to go into long-term care if they did not have the funds to be able to go into assisted living. Now, some provinces do have some subsidies for assisted living. Ontario does not. In the US, individuals, some are able to to get some coverage for the healthcare services, but not the room and board.
Misty Pratt
Dilys, you have personal experience with a parent in an assisted living facility, so can you tell us a bit about that experience?
Dilys Haughton
So, my dad was a very independent gentleman who was in his 90s, and he had married for a second time at the age of 85 and so he and Audrey decided to move into a retirement home in their 90s. And they toured a number of facilities, and so they picked one and moved into the independent living part of the home. So, there were three care levels in this particular home. Independent living, where they’re responsible for their own care, essentially, but they get their meals provided, and other kind of fee for service costs as needed. And then there’s an assisted living unit where some personal support and nursing services are provided or included in the care package. And then there was a third unit, which was for women who had dementia, and it was a locked unit. And so, he remained in the independent living retirement home with Audrey, and Audrey’s care needs increased, so they moved up to the assisted living floor. And that didn’t work well for my dad, because he was very cognitively alert and very physically able, and so living in an environment with less able people was difficult for him, and so he moved back downstairs to independent living, and Audrey remained on assisted living. He remained well and in independent living until the last six months of his life. He had a small stroke, and he then was unable to walk, and he had some trouble swallowing. And that for us was the key decision point about, should he remain in the retirement home with other services, or was it time to move to a long-term care home?
Misty Pratt
I’d love to talk a little bit about the decision point, because I wonder how it was made at the time. You know, for your dad, what that felt like? And then also, had you been talking about this kind of decision leading up to, like, was this a conversation you were having back and forth together about, here’s what we’re going to do if?
Dilys Haughton
So that’s a great question. So, I have a healthcare background, and so for me, I knew it was important to have that conversation well ahead of time. And my brother and I and our families and my dad all decided that we would do whatever we could to keep him at home. And so, his home was the retirement home. And so, every time he had a medical incident, whether it was a fall or he was unwell. You know, “do you want to go to the hospital, Dad, let’s do everything we can to keep you here”. And then, when he had a stroke, that was a big decision point. So, because of my clinical background, I implemented some things right away to support my dad, so I implemented thickened fluids. Like just, not based on anybody’s expert opinion, just on my own knowledge. And I got him a temporary wheelchair, and we put in an SOS call to home care, and they responded within a week with speech language pathology and occupational therapy, and within two weeks, we had him really set up in a new way so that he could function in the retirement home. But it also meant that we put in some private caregiving for him, and the bill for that skyrocketed. So, we already had some daily care for him, for socialization and stimulation. But within a month, the cost of that went from about $5,000 to $30,000 so.
Misty Pratt
Wow, that’s huge.
Dilys Haughton
He had the resources for us to be able to do that, but it in that month we had to make a decision about what we would do. So we ended up moving him back to the assisted living part of the retirement home and cut back on our private caregiving. We did talk to Home and Community Care about the possibility of placing him into long-term care. And you know, the retirement home was his home. And he was still cognitively very well, and all his friends were there, and so we dipped into his savings and maintained him there for another six months. And for him, that just made all the difference in the world. And I will just give one example, because he lived in the assisted living part of the retirement home, all of those people ate together. And for my dad, that was really difficult, because they weren’t verbal and they weren’t social. And so, we negotiated with the retirement home for him to eat with his friends in the well people dining room, and that took a lot of negotiation. They were worried about choking risk, they were worried about supervision. They were worried about trauma for the other residents. But, you know, it was wonderful. It took a lot of effort for people to transport him there and for people to take care of his needs, but they really focused on his needs as a resident, and that was special to us about that place, and we didn’t think that long-term care would be able to customize his care to the same degree. They wouldn’t necessarily be able to accommodate that he could get up at nine or 10 o’clock in the morning and then eat breakfast. And so, the retirement home, we thought could really be more person centered than what I had previously experienced in long-term care. So, I’m just going to share that my dad was actually able to die at home. For that I am just incredibly grateful. He just became very unwell. The doctor happened to be there, the best nurse in the place happened to be there. They put in a plan to keep him comfortable, and everybody rallied around and so they knew he wanted to stay there, and they made it happen. So, he died at home, and that was our wish for him. Anyway. I’m not disparaging long-term care in any way, but they are institutions that are heavily regulated and have to kind of follow regulations where, in our case, the less regulated retirement home was beneficial for my dad. Thanks to that wonderful retirement home.
Misty Pratt
I do wonder too. It sounds like with your healthcare background, that you had the information, the knowledge, to really advocate. It sounds like you were a huge advocate for him in terms of what you knew he wanted. Do you think someone else in a different position that doesn’t have that background or doesn’t kind of know how to navigate all of this paperwork and negotiation with the care home. Would they have a different experience, do you think?
Dilys Haughton
For sure, my background and advocacy played a key role in my dad being able to stay there. Kind of the default position would be go to hospital or go to long-term care, and it requires energy and effort and commitment. It’s hard work. But I think many people do that. It’s not just me. I think people do that. Lots of families were involved with their relatives in retirement home, for sure.
Misty Pratt
So Dilys, you’ve touched on a lot of the healthcare needs that people have. And Derek, I wonder if we can go back to you to talk about, what does the evidence tell us, then about the health of people in assisted living?
Derek Manis
So it is, in a lot of ways, a substitute for long-term care, particularly among the individuals who may be on the cusp of needing long-term care, or who are considering it. We know at a population level that the individuals who are in assisted living look a lot more like the individuals who are in long-term care, and this is for I think, a couple key reasons. The first that Dilys touched on is that it’s someone’s home. So, it’s not necessarily an institutionalized healthcare sort of setting. It is a private residence. It’s a home. And the second is that with all the advances we have in medicine, people are able to live longer and live fuller lives, and so if people can live longer, they still have a good quality of life, why go into long-term care? I think, before the pandemic and even after there were a lot of people never really wanted to end up in long-term care. They wanted to be in their home. They wanted to age in place. No one willingly wanted to go to to those facilities. It was sort of out of need that that they would go. And assisted living has really expanded to to address the wants of many individuals to be able to age in their home but still be able to get the care they need.
Misty Pratt
And one of the studies you did did show, though, that there were a lot of healthcare needs not being met. So, I’ll put the question to both of you, do you feel like at times assisted living is not quite meeting that standard of being a substitute of long-term care?
Derek Manis
Well, in terms of what we can study at a population level, we can see that these individuals have higher rates of emergency department use, higher in hospital admissions, lower rates of primary care. One of the things that we can’t study at population level is whether or not there’s a privately contracted physician with the home providing care in the home, and that’s maybe a different podcast episode to discuss, sort of the nuances of some of the billings data. But we can’t necessarily know that. Some of this could be a function of assisted living and sort of the regulations around it and how it operates. Another part of it could also just be a function of a lot of the primary care crisis that we see in Ontario and Canada. And so we can’t make a very clear cut conclusion that it’s assisted living that’s driving some of more of their care needs, when we do have some really strong evidence to show that those in assisted living do not go into long-term care at the same rate as those in the community.
Misty Pratt
And Dilys does that track for you? Did your father have a family doctor on site?
Dilys Haughton
The retirement home had two physicians that attended the home every other week. So, his family doctor was there on Wednesday afternoons, from 12 till two or 12 till three. And so, the limitations of that are that there weren’t very many appointments, and you had to wait two weeks to see a doctor. So, if an issue came up in the short term, one way to address that would be the nursing staff would fax his office and he would fax back orders. And so that worked for us again, because I could often say what I thought was happening, and I had a very good relationship with the staff at the home. But if something urgent came up, the options were to go to the emergency room or to the after-hours clinic associated with this family doctor’s practice or the urgent care department, but that would depend on my ability to take him as well, and so when he was able to walk, that was okay, but once he was in a wheelchair, that option was no longer possible.
Misty Pratt
So, this may be, as Derek said, an issue of primary care, as opposed to just about the assisted living facility itself.
Dilys Haughton
Absolutely.
Misty Pratt
What are we getting right with assisted living? What’s the positive here?
Derek Manis
I think Dilys will agree 1,000%. It is the fact that it’s really addressing the needs of individuals and their families for how they want to age. That’s a huge, huge component. I think also, in that same vein, being able to provide the care that people want in older age can make aging, it can help facilitate aging, and it gives people a better quality of life. I don’t think many people would want to be given arbitrary options at the end of their life for how their days are going to go out.
Misty Pratt
Yeah. Like, do I want to eat breakfast at 9am Yes, right? That’s a choice I want to be able to make.
Dilys Haughton
That’s really important. Like, it doesn’t sound like a big thing, but my dad was not an early riser, and he was 102 by this point, right? And so why should we make him get up at six in the morning to eat breakfast?
Misty Pratt
Seriously.
Dilys Haughton
Yeah, what do we get right about retirement homes? I agree, Derek, it’s home. It’s a pleasant environment. I think the staff always try to do their best for the residents. They genuinely care about the residents, and it shows even when they’re short staffed and there’s change in management, the frontline staff always make it happen. And that continues to amaze and inspire me, and so I love that. I think Home and Community Care in Ontario provides support to many of the residents in retirement homes, and the ability of the care coordinator to work with the staff of the home works really well. The ability of the retirement home to accommodate people at different levels of care, I think, is helpful. The downside to that is I think the lack of regulation could impact care.
Misty Pratt
What has to change to better meet the needs of people in assisted living?
Derek Manis
Well, I would sort of jump in and say that in Ontario, retirement homes are regulated, and so there’s the retirement homes regulatory authority that acts somewhat similar to, like the College of Physicians and Surgeons, the regulatory body for retirement homes. And in Ontario, there are 13 regulated care services. Pretty much every retirement home in Ontario provides meals and medications, but then on the more sort of advanced end there’s dementia care, skin and wound care, medical services and sort of pharmacist services. So it’s not that retirement homes are not regulated, but the amount of care that they can provide sort of goes up to a certain point, and then, even with the medical, nursing, pharmacist services in the act, it punts it back to well the services are provided in the scope of the provider. So, physicians can only do what physicians do. Nurses can only do what a nurse is regulated to do, and so on and so forth. So that could look very different, or that could meet a certain standard that it’s not necessarily like what the home itself is providing, because it sort of punts that care back to the scope of practice of that practitioner.
Misty Pratt
And because our healthcare system is fairly siloed, that’s a bit of a problem of then having kind of like wraparound care, of all the services somebody might need.
Derek Manis
There’s currently no required staffing ratios in the regulations, as far as I’m aware, at the time of recording, whereas in long-term care and nursing homes, those are very stipulated. So, there’s this ability to be really accommodating to the needs of individuals. But in the same vein, all the care is not as prescripted as it would be in long-term care, and we can see that from the growth of the assisted living sector that more individuals want to be able to have that choice over their care, increased autonomy and to feel like they’re in their own home, rather than a medical healthcare institution.
Misty Pratt
Derek, do you think that we need to be providing more regulation for assisted living facilities, or will that remove some of this freedom that you know, Dilys shared for her father, that he experienced?
Derek Manis
Well, I’ll say, first, it’s a complex question. And second, I’ll say that’s exactly what regulation does. It removes the freedom to be able to make very individualized choices, because regulation is prescriptive so on the one hand, if we see more individuals going into assisted living, where they have needs that are very, very similar to home and long-term care, and they’re vulnerable individuals, and the care is not regulated to that same level, then I think it’s an easy, easy answer. But on the other end, if we’re seeing individuals who are still fairly autonomous, do they need the same level of prescriptive care? So, it’s not an easy answer.
Misty Pratt
It sounds like a tough balancing act.
Derek Manis
It is very complex.
Dilys Haughton
I think Derek, you articulated the balance of regulations versus, yeah, it’s a double-edged sword for sure. And again, when you have a fee for service model in retirement homes, everything you add or would regulate would bear an additional cost for the residents, right? So,
Derek Manis
And that really goes back to the point I made at the beginning. The healthcare system is really not set up to accommodate home and long-term care. It’s medically necessary hospital and physician services home and long-term care is deemed as extended services under the Canada Health Act, and each province and territory makes its own decisions about whether or not to include home and long-term care under their respective plans. And so, in the 80s, there was not a significant need to include home and long-term care in the healthcare system. But now it’s more important than ever, in my opinion, but it’s a very tough conversation to have with politicians and constituents to say, “well, if you need that trauma surgeon because you are in a really significant car accident or something, that there may be some cost sharing for that, but you’re going to be able to get home and long-term care later”, like they’re very tough conversations about restructuring the healthcare system, which is why it has never really been reopened or touched by any federal politician in nearly four years.
Misty Pratt
Even though our population, 85 plus, is the fastest growing population in Canada.
Derek Manis
Right? And like it’s becoming much more challenging to ignore, but it would be significant headline news that the Canada Health Act is getting reopened, that there’s going to be much greater access to home and long-term care for everyone like it would be a huge, huge thing.
Misty Pratt
How has this changed your perspective around what you want as you get older?
Derek Manis
When I was young, I was a caregiver. Well, we had my my grandfather live with us, and so I always looked at growing old and getting care at home, but I think about the people who are in these care homes. And these are grandparents that we love, they are brothers, sisters, their loved ones in our families. And they’re veterans, we really should be doing a good job of making sure they’re taken care of. And so that is that is why I am very passionate about the research that I do, because it’s important that these individuals have a good quality of life and that they are comfortable.
Dilys Haughton
So, my husband and I have this conversation regularly because we’re in our 70s, and I like to be proactive, if we can. We want to stay in our home. And I know everybody says that, between the two of us, if we spend about $10,000 in a retirement home, that could buy a lot of private in-home services. And so, I think that’s the route we’d like to go, if that’s at all possible. Recognizing, in a heartbeat, something can change, and that’s not possible. I would happily move into a retirement home. I think that is as good an environment that’s got some support and still allows it to be home. Yeah, I would happily do that if I needed long-term care. That’s what I would do, too. But one thing that I- we actually did explore this with my dad. There was a group of private homes in the city where he lived that seemed like a wonderful model. And there are models like this in other places where it’s kind of a home with four or five residents, so it’s, it’s not a long-term care model, but it’s, it’s like a group home for elders. And I think that model holds great potential. Now we tried it, it didn’t work for us for many reasons with my dad, but I would love to see us explore other models besides retirement the larger institutional models like retirement homes and long-term care, that would require a lot of work to implement, but I think that would hold potential and would be a more human approach to aging, rather than the institutional approach.
Misty Pratt
I’ve been reading about that model.
Derek Manis
Going back to the point I made, sort of assisted living. Uh, sort of takes up this, this huge gradient between being in your home that you’ve lived in for a while and receiving care and long-term care. In that gradient, and in sort of how retirement homes are regulated in Ontario, there are some homes that maybe only house six, seven older adults provide meals and medications, and under the law in Ontario, thats a retirement home. But then there’s others that Dilys described and you Misty, that looks like huge golf course and different levels of care from that independent living all the way through to sort of a dementia care unit, and that’s also a retirement home. As people aged and lived longer, with multi morbidity, this whole gradient has really expanded, and there are so many different options in there now, which is why, in some ways, it’s called this sort of “dark matter of long-term care”. It’s this hugely expanding gradient of options for living in your older age and getting the care you need.
Misty Pratt
And not maybe getting the attention we often give to long-term care. Is that why it’s also called the dark matter?
Derek Manis
I would say so. I think for a lot of people who really just think of home care and nursing homes, assisted living or retirement homes, it looks very much the same. And I’m sure that there are people who go say, “hey, you know, I need to apply for long-term care for my loved one. I want to go to this facility up the street from me. It looks really great and shiny and fancy” and then are probably told that’s not a long-term care home.
Misty Pratt
Thank you both so much for coming on the podcast today and sharing your experiences and expertise with us.
Derek Manis
Thank you so much for having me.
Dilys Haughton
Thank you.
Misty Pratt
Thanks for joining me for this episode of In Our VoICES. Check out the show notes for links to research and any other information that we’ve referenced in this episode. A reminder that the opinions expressed in this podcast are not necessarily those of ICES please be sure to follow and rate us on your favorite podcast app. If you have feedback or questions about anything you’ve heard on In Our VoICES, please email us at [email protected] and we will get back to you. All of us at ICES wish you strong data and good health.
