The Current - Putting dignity at the centre of long-term care

Episode Date: March 18, 2025

Kay Carter is 101 and lives in a care home that uses the “butterfly” model of dementia care — a resident-centered approach that emphasizes dignity. As part of our series As We Age, we visit Carter and her daughter Donna Hicks at the care home in Ottawa, to hear about the importance of finding a residence that truly feels like home.

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But it's time to imagine what we can do with more. Join Scarborough Health Network and together, we can turn grit into greatness. Donate at lovescarborough.ca. This is a CBC podcast. Hello, I'm Matt Galloway, and this is The Current Podcast. My name is Donna Hicks, and my mom is turning 102 in May. Wow, I know, wow.

102, we should all be so lucky. Donna and her mom, Kay Carter, live in Ottawa. And we're meeting them today as part of our series As We Age, about the challenges of getting older. Kay lived in her own apartment until she was 95. And then Donna saw signs that she was no longer safe there. She drove down the wrong way on a main street. And I found her car keys in the freezer. She

couldn't find them for two days and when I went over and found them in the freezer and then found the kettle stuck to the stovetop so it had run out of water I knew that she wasn't safe anymore. It wasn't safe for her to be alone. So she was very lucky there was a retirement home just two buildings down from where she lived so she went there and she was there for two years but then as she became more cognitively impaired she really needed much more help and much more care. And so began the search for the right place for Kay to live. They visited 10 long-term care homes. Some places the food was microwaved I really didn't like that

idea. Some places just didn't smell clean. People didn't look clean. People had, their diapers hadn't been changed and they needed to be. Some places just smelled of urine. Some smelled so overwhelming of cooking odours, they just weren't pleasant. Then they found the Glebe Centre, long term care home.

It is a not for profit that offers a resident centred approach, something called the butterfly model of care for dementia as well. CBC Ottawa's Hallie Cottenham visited the Glebe Center one day when Donna was there volunteering and visiting her mom. Hi mom. Hi darling, I'm back. I'm back from my trip. I'm back. I'm back from my trip. You are? I am. How are you? Where did you go? I went to Panama. I went to see the canal. You didn't, did you? I did. Oh, that was wonderful. It was wonderful. It was a trip of a lifetime. Oh, good. Yes. Did you miss me? I couldn't go. You couldn't go. I know. We talked about that a lot.

I know you wanted to go. Yes. But I brought back lots of pictures. Oh, that would be good. Yeah. She's still very sweet and a very gentle soul. So on top of the armoire, dozens of pictures of family from across the years. Is there a picture of Kay here?

Right here. Oh wow. There she is with my dad. My dad died at 47. It was very hard. She'd never written a check. She'd never drove a car. And in the space of a year, she had to learn to do all these things and become self-sufficient and go out and get a paying job.

Yeah, she really was just a beautiful woman. Always loved clothes, always loved getting dressed up, always loved going to parties. No, I remember very little. Okay. I wish I could remember. Hmm. But right now... In the last six months she's been reliving parts of the war.

She was a fire warden during the war, standing on top of a building with a two-way radio and a bucket of sand. And when the bombers came in and were bombing, her job was to tell them downstairs the bombers were here and there was sparks on the roof. And her job was to try and put them out with sand. That's how she met my dad. He was a Canadian Army officer. And she came back on, she was on the last ship bringing the war brides over. Was that during the war, Mom? Are we having a war memory now? This is just what's been happening.

Oh, it's happening now? Yes. Oh dear, okay. It is the most difficult thing in the's happening now? Yes. Oh dear. OK. It is the most difficult thing in the world when you become your mother's mother. When you're feeding her food and you're comforting her, when it was always the other way around. It's very difficult. And I feel very deeply

for families that go through it that aren't prepared for that. OK, let me just do this sweetheart. There we go. Are you gonna go and sit down mum or should we go downstairs? What do you wanna do? They want you to do what you want to do.

It's a big transition when you come from your own home and being able to do what you want, when you want to do it, to coming to a structure of long-term care. And if you've worked hard all your life and you come into long-term care in your late 80s, 90s, you want to be able to sleep in if you want to be able to sleep in. And on the medical model, my experience has been in other homes as well where I volunteered, is that people are in bed very early and they're up very early and sometimes they're sitting

in a wheelchair or sitting at breakfast and waiting half an hour, an hour for breakfast service to start. Because think about it, you've got six PSWs, if you're lucky, getting 32 or 34 people up, dressed, cleaned, teeth brushed, hair combed, in clothes, and in that dining room, all before nine o'clock. It's tough. Did you want to head down? Sure. Do you want to head down? Sure. You want to go down?

Should we go visit Gloria and Betty? Should we go see the girls? Okay. Alright, let's do it. Okay. Here we go. One, two, three, and we're going up gently. There we go.

Okay. Okay, okay, take your time, okay? She gets quite excited when I say, okay okay let's head down and see the girls because that's what she did in the apartment and that's what she did in the retirement home they all got together and we're very... Hi, good morning. And if you look around this you can see everybody here is engaged I mean we do have some family members that are in today with their loved ones but also the PSWs are engaged with people. Colours are bright, everybody's got something to do, there's

a music program going on in one room. Some people are watching TV, there's some people that are just having a little snack in the dining room so it's full of activity. It's busy, it's like a home. Exactly with a lot of kids. Hi good morning. Oh they're doing a puzzle now mom probably couldn't do that anymore but she would color. Look at this somebody just finished. Excellent job. She do slow down but she is this your mom? Yeah it's my mom mom. This is her favorite hobby. I visit her often. The people that have family are so, so lucky.

But we have so many people that have come into long-term care. They're coming in older, they're coming in frailer, and often they've outlived their families. And it's very sad. They're very lonely. I mean, not everybody has the option of coming. People work and they just don't have a chance to come in. And some people come every single day to feed their loved one.

But often people are just alone and it's very difficult for them. Oh hello beautiful Katie. Oh my goodness. How are you? Oh my goodness, you're gorgeous. Wow. Yeah, today you look lovely. You always look good anyway.

But you're looking rather fine. Thank you. And these are your lovely pearls. My goodness. You always love your pearls. They were my grandmother's. Oh, is that right? And your grandmother passed them down to you?

Yes. And I guess Donna would inherit them after you're done with them. Or maybe Kim. Are you protecting them at this moment? Yes. You're hiding them. She don't take them. Oh you don't need to

hide them. We want to see the beauty of your pearls. Hello my dear. Oh there's your Gloria mom. Wow. Is that good mom? So nice seeing you baby. So nice seeing you, baby. Ha ha ha, baby. Ha ha ha. Nice seeing you. Do you want to sit down, mom? Yeah, I think she wants to sit down. It's so important to have a special friend, isn't it, Gloria?

Oh, it is, really. It is. And we are special friends, right? Yes. Yes. Right now, she's holding hands with my mom and they're chatting. She's often patting mom's shoulder or holding her hand. My goodness.

You're looking great. The one thing that I always say to people that ask about Butterfly is, how do you measure happiness? You know, you can do evaluations, you can talk about using less drugs, you can talk about less falls, you can, there's lots of things that you can evaluate. But how do you evaluate satisfaction of the families and satisfaction and happiness of the people? Because in the medical model, right after lunch, people are put to bed and staff sit

and they do their charting and then that's in all homes but here you'll see people are holding a hand and charting with the other hand it's just it's just such a different way of caring for people and and some people will be resistant to a new style of care excuse me we've done it this way for 20 years and this is the way we want to do it and we're going no no no no. What we want and what I would like to see as a family member is that you're spending time talking to my mom, walking with my mom, holding her hand, telling her that she looks lovely today, smiling when you walk by her. These are all really important things. Like I'm in my late 70s now and and I have to start thinking about my future.

It's the way I want to be treated. It's Donna Hicks with her mother Kaye Carter. Kaye is turning 102 in May. To find out more about the butterfly model of care, we also got a tour from Susan Zores. She's director of resident operations and compliance at the Glebe Centre in Ottawa. So butterfly care is really about little things,

really. It's about kindness, compassion, taking the time to get to know the residents that we care for, what is their life story. But it's also about staff care because we want our staff here to want to stay and work at the Glebe Centre and not go elsewhere. We want people to stay in long-term care and not go to other sectors. So we really try to create a sense of this is a home

away from home. It really is about changing that culture and long-term care. We're going to go this way. So again you can see lots of things around, lots of things on the walls for folks to live with. Here's members of our team, everyone's kind of coming in. This is a busy place. It's a busy place. So it's like a house with different rooms. And this room looks to have like a kitchen or a laundry theme. Kitchen, yep. They often will do baking with the residents in the evening,

which is really nice because then the whole place smells nice. Can you explain why baking something or, I don't know, doing laundry? I see there's a basket full of laundry here that looks needed, needs to be folded. What does that do for the folks that live here? Well, I think it's like all of us. We all need some sort of meaningful occupation just because you're in long-term care. You know, hey, would you like to help me fold the laundry?, hey would you like to help me fold the laundry? Hey would you like to help me do the dishes? You know, people want to feel like they're part of something. But the laundry doesn't really need to be folded.

No, it doesn't. But you know, it's something they always did and why would they not do it now? So through the doors we go? Yeah. Oh. What we have here is we have a series of Lexas throughout the home area. These are some of the people that we know our residents like. So we can say, hey Alexa, play the best of Dean Martin. Hey Alexa, turn it up.

Institutionalizing our seniors is just absolutely not, should never be an option. Language is another important thing. We don't say it's a unit, we say it's a home area. You know, we tell the staff, you know, we're not, don't yell I'm going on break, say I'm just going to step out for a while because we typically don't say that at home, I'm going on break. So it's like being really aware of how we carry ourselves. Do you want me to leave that on? Yes? Okay. We're housing people is not where we want to be. We want to make sure that that last piece of their lives are meaningful,

respectful, that there's dignity, and we just need to get there, because it could be you and I, and we all say, oh gosh, you know, I don't wanna ever live in long-term care, but maybe that's, we shouldn't be saying that, maybe we should be saying, if I have to go to long-term care, it's going to be a good thing for me, that there's gonna be people there

that are going to make sure that I'm just not sort of spending the last days just waiting, and that's what we're really trying to do. This is Susan Zores at the Glebe Center long-term care home in Ottawa speaking with the CBC's Hallie Cotnam. bellies. It's in the hearts of our neighbors, the eyes of our nurses and the hands of our doctors. It's what makes Scarborough Scarborough. In our hospitals we do more than anyone thought possible, with less than anyone could imagine. But it's time to imagine what we can do with more. Join Scarborough Health Network and together we can turn grit into greatness. Donate at lovescabro.ca At Desjardins, we speak business. We speak startup funding and comprehensive game plans.

We've mastered made-to-measure growth and expansion advice, and we can talk your ear off about transferring your business when the time comes. Because at Desjardins Business, we speak the same language you do, business. So join the more than 400,000 Canadian entrepreneurs who already count on us and contact Desjardins today. We'd love to talk business. Susan Bradley is a professor in social work and political economy at Carleton University. She specializes in long-term care, and she is in our Ottawa studio. Susan, good morning to you. Good morning.

As you listen to that, what's going through your mind? Well, it's taken me back to the many visits I've made to person-centered or emotion-centered care homes, and I'm thinking of all the wonderful experiences that I've had in those settings. So, Butterfly model is usually termed emotion-centered care, but it does have a person-centered care approach, as does the Eden model. The City of Toronto, in their 10 public homes, has developed a model. There's a Quebec model,

Bien-Tretemps, that has many of these similar elements. All of these care homes are working to provide an environment where residents experience respect and dignity, where families are incorporated into the home life as fully as possible, and where people's schedules and preferences are taken seriously. And those are all really great things. For a lot of people hearing this, they might think that that does not sound like the long-term care home that they know.

We heard earlier about concerns around, do residents seem clean? Does it smell? Why isn't all of that care person-centered care, do you think? Well, there's a lot of reasons why, but the main reason is that it costs a lot of money to keep a place clean. You need more staff.

You know, we have publicly funded and owned homes owned by municipalities or by the province. We have not-for-profit homes that are run by charitable organizations, and we have for-profit homes. But all these homes get money from the province to provide care, as well as the room and board that residents pay. And if you're in a for-profit home, some of that money's got to go to for-profit, which means it might not be that the cleaning service is up to snuff or it might not be going to get fresh strawberries and it means it's not going to go to staffing. So in a lot of long-term care homes you'll go and there's a range of part-time work, there's

a lot of people on contract, there's people that are called in on a sort of very short-term basis and so you can can imagine that, you know, you're living in a long-term care home and you have different people coming to get you up every morning. They don't know your family. They don't know you and your preferences. They don't know that you hate wearing those pants. And you can imagine that residents get distressed and find this difficult. They don't like it. And workers are confused and aren't satisfied with the care that they're offering. So you have a place like the

Glebe where a high percentage of the workers are full-time and that they have their steady regular people, that the residents and the workers have time to get to know one another. They form relationships. And then you have what I think is even more important in a long-term care home than a home-like environment. You have a community and that is wonderful. During the pandemic, there was a real push to, by some, to increase the number of not-for-profit long-term care homes and perhaps have a look at that funding model. Is there any indication that government is interested in doing that? Well, I'm not seeing any political interest in that in Ontario. I can tell you that in New

foundland and Labrador, there's only 2% for profits. In Saskatchewan, there used to be a few for profits, I think about 5%, but after the pandemic, the government took those homes over and those corporations exited the province. In New Brunswick and Manitoba, there's 14 percent. In BC, there's 37 percent. So you can see there's no consistency across Canada in the amount of entry of the for-profit sector into long-term care. But it is a matter of policy. In Ontario, for example, where we have the highest in Canada at 57%, it has been a direction that policy has taken for quite a number of years in quite a few different governments to encourage for-profit care.

And it has not improved the quality of care in the province. In fact, some of the worst offenders, the companies that ran the homes that the military came into during the pandemic, have been awarded big contracts for new beds. Is there evidence that these, again, these types of homes, whether it's the Eden model or the butterfly model, is there evidence that these types of homes actually provide better care than traditional medical models? So the evidence on that question, Matt, is really uneven. There is some evidence that they have high potential, that's the language that's used, to reduce residents' loneliness and boredom.

It also shows that it's quite promising for promoting positive mood and engagement. There might be fewer falls and infections and possibly the use of antipsychotics and other restraints are reduced. However, Donna did say that one of the problems here is how do you measure well-being? You know, people's lives having meaning and joy. that one of the problems here is how do you measure well-being? You know, people's lives having meaning and joy. The work that I do is about spending thousands of hours

with international interdisciplinary teams to study that. We do our best, but there's still an elusive quality to what's important to us in life, and it is hard to measure. I just wonder, in part because there has been pushback to this model from some who say that things like dementia has, with dementia, we have a lower threshold to accept somebody else's opinions without meaningful scientific evidence, that we wouldn't do that, for example,

if we were talking about antibiotics. Well, you have to decide what long-term care is about. These models, for example, the butterfly model is designed for dementia care, but not all residents of long-term care homes have dementia. Most do, but about 10% of long-term care home residents right now are people under 65 who have chronic conditions, disabilities, and need 24-7 care, but really don't fit the model that Butterfly or the Eden model, which is designed for elders, they don't fit, and they live in those same homes. Now we can talk about whether or not they should be there.

That's kind of a separate discussion. You said something really interesting, which is in part we need to think about what the goal of long-term care is. Well, I'm afraid in my view, it's become a bit of a dumping ground. A warehouse. Yeah. For people that we don't want to have in hospital, understandably, but they have extremely high care needs. They need to have support 24-7.

So for some people, this is palliative care, but for others, they can live there for years. So again, I don't think there is a central understanding of what long-term care is about. It's more a lower cost provision of care to those who need 24 seven care for chronic conditions. If somebody's looking for a care home for themselves or for a loved one, often that search comes at a stressful time, perhaps in a moment of crisis, what would, what advice would you give them?

I have really clear advice. First of all, I think you should investigate your local municipal or provincial and your nonprofit homes in your community. That would be the first place I'd go. I would be looking for whether the food is made in-house and uses lots of fresh food, fresh eggs, fresh vegetables, and not what they call in long-term care, thermolated food. And it sounds as delicious as it might be. Exactly.

I would be looking for a home where the laundry service is in-house and that the housekeepers are employees of the home. Clothing and laundry are huge issues of concern for people. And housekeeping, that infection control is better and more sensitive because housekeepers, you know, they spend a lot of time in residents rooms and residents bathrooms and when they know the people, they know what to watch for and what to be careful about. So those would be some of the top tips that you might not think about when you're looking

for long-term care. I think the other thing is I would be asking about the staffing, and I'd be looking for places with a high proportion of full-time and permanent part-time staff. And I would be paying attention to the things that Donna was talking about. Is there a sense of liveliness, energy? Are people gathering and talking together? Are there opportunities for spontaneous activities?

Does it seem like the staff are relaxed and having fun at work? Those are some of the things I'd be looking for. Are you thinking about this? I mean, if we are, you know, lucky, we will all get older, and these will be things that we may have to deal with down the line. Is this something that you're thinking about now, personally, for you?

Absolutely. You know, I have parents who are living in a retirement home and in their 90s, and I'm going to be hitting 70 myself before long. So I've given my husband the names of the places I want to go to should I need care. The other reality though is that most places that are good have long waiting lists. And you know, in Ontario, for example, you can put three homes on your list and you're supposed to take the bed of the first place offered.

And so be careful of what you put on that list, but when you need it, sometimes you're in a crisis and don't end up where you want to go. And moving again is really hard on people. So you know, there's a lot of people, Matt, who are really caught between a rock and a hard place. This is a really important conversation. I think a lot of people will find their way into it.

Susan, thank you very much. Thank you. Susan Bradley is a professor in social work and political economy at Carleton University. We are having a series of conversations on this program about getting older. We're calling it As We Age. And if you would like to add your story to that series, you can email us, thecurrent

at cbc.ca. For more CBC podcasts, go to cbc.ca slash podcasts.