Dr. Andrea Iaboni and Dr. Michelle Wyndham-West on aging and inclusion, seniors, homelessness and cognitive impairments!
Hi, we are Arezoo Talebzadeh and Kaveh Ashourinia, and this is our podcast on inclusion.
Quantization is an independent project with the support of the Inclusive Design Research Centre at OCAD University.
[Music: Quantization (Theme-Guitars)]
Kaveh: Hello, and welcome to the 14th episode of quantization!
Arezoo: The World Health Organization predicts that by 2035 more than 30% of Canadians will be over 60 years old. There is no typical definition for older adults. Frailty and cognitive decline may start at any age.
There is a need for public health strategies to address the diversity and wide range of seniors.
The Corona Virus pandemic has shown the weaknesses and shortcomings of our systems worldwide in long-term care and senior housing.
As the senior population is rising, so the number of homelessness between older adults.
As the WHO mentions, although the number of surviving generations in a family has increased, today, these generations, more likely, live separately and alone. Not having social support is one of the main reasons for homelessness among seniors.
Social isolation is a big topic during COVID, which we need to address going forward. How the system needs change to adapt to the current and future needs?
• How financial situation, income disparity and policy affects health and well-being
• How this issue addressed in long term care settings
• How personalized vs. institutionalized mental health settings can be helpful
In this episode, we discuss housing for seniors and those with cognitive difficulties such as dementia with Dr. Andrea Iaboni, a scientist at The KITE Research Institute at Toronto Rehab, and Dr. Michelle Wyndham-West, the graduate program director for inclusive design and the design for health programs at OCAD University.
Arezoo: Hi Andrea and Michelle, thank you both for accepting our invitation and welcome to our podcast. Let’s start by introducing yourselves.
Andrea: Should I start?
Arezoo: Sure. Yes.
Andrea: Okay. So, I’m Dr. Andrea Iaboni. I’m a Geriatric Psychiatrist and a researcher. I’m a scientist at The KITE Research Institute at Toronto Rehab. It’s part of the University Health Network. I’m also an assistant professor in the Department of Psychiatry at the University of Toronto and I have a particular interest in innovations and dementia care, ways that we can incorporate technology to augment the care of older adults with dementia and supporting people with dementia living in the community and in long-term care, creating more dementia friendly environments.
Michelle: Great. Thank you for having us. My name is Michelle Wyndham-West and I’m the graduate program director for inclusive design and the design for health programs at OCAD University. I am trained as a medical anthropologist and I specialize in health equity, aging, gender, policy and co-design and I’ve been spending most of my time lately with a co-design project with low income older adults in Hamilton and tracking their housing instability experiences, including homelessness and the project has extended throughout COVID as well.
Kaveh: This is episode 14th; volume 12 of signal, Aging and Inclusion, seniors, homelessness and cognitive impairments
Arezoo: Perfect. I don’t want to ask you question. I just wanted this to be a conversation between you two but I just wanted to tell that this is about, basically health and inclusion, and we want to focus on the dementia, and the housing issues and the gender disparity, and it goes anywhere that it can go. So, I don’t know which one of you want to start but if anything comes to your mind about all of these stuff.
Andrea: I thought that Michelle, her research is really interesting because there’s a lot of human stories and a lot of really, real interest in how people live and I don’t know, I think it’d be a good place to start, if you started by talking about that project. I find that really fascinating.
Michelle: Absolutely. Thank you. I just finished writing the first article that we’re sending to publication next week. So, I can talk a little bit about that, the first set of results. So, over the last year, I’ve been doing an ethnographic project with low income seniors in social housing in Hamilton, Ontario. So, the City of Hamilton has been a great partner and I went in, they arranged for recruitment sessions for me, and I recruited quite a variety of older adults, a very diverse group of people, which I was very thankful for. I had about 24 people signed up and what we did is we gave them tablets, so both iPad tablets and Samsung tablets, depending on their preference, so that they could record their housing experiences, which is videos, photos and daily diaries.
Michelle: I just recently in September, when I went to pick up a Samsung tablet from one particular participant, a lovely older lady, she had put in over 200 diary entries into her tablet, I mean, they have so much to say, it’s so wonderful. So, it’s a full ethnography, so we gave them the tablets to have this art space approach and the rationale behind the art space approach is that it’s participant-led data, so they get to choose whatever they’re putting on their tablets, so what’s significant to them? So, just trying to even out the power relations and the research relationship but it also involved one-on-one interviews, very lengthy interviews, which I used to do in person, but I had to switch over the phone with COVID.
Michelle: Also before COVID, I was doing observation. So, I used to spend my Saturday afternoons in the games room or the common rooms of the buildings, just sort of having tea with the residents, which was just an amazing form of ethnographic research. So it was great and I found, as I said before, people had plenty to say about their housing experiences. I was a little surprised initially to learn how many of the older adults had actually been homeless as older adults, so as seniors, so not chronically homeless. This is something that I think is really new. I did some background research, some contextualization for their article that I’ve just finished writing.
Michelle: Amanda Grenier is doing some really good research in this area but there’s not a lot of research about seniors who are recently homeless, and I really think this is an important piece to put in. So, they were so kind and generous and shared their stories about being homeless, about renovictions, having difficulty keeping their apartments and of course, they had all found a place in social housing, so they were okay at that moment when they were telling the story, because they are in rent-geared-to-income so it can’t be more than 30% of their income, but just incredible stories. I could go on forever so I probably shouldn’t say too much. I did notice, because Arezoo, you mentioned gender, there were very different trajectories, housing instability trajectories for men and women.
Michelle: There are very different stories and different sets of circumstances, but maybe I should share the floor with other people.
Andrea: No, but I want to know more about like the actual housing, was it … this was seniors housing or was it more generally social housing?
Andrea: So there was a real community to it. You said, like, they’re having tea in the games room. That’s really lovely.
Michelle: It was wonderful and then, when the City of Hamilton set up the recruitment sessions for me, people would come. I had posters that I fixed in the lobbies and not everybody has signed up, which is okay but then when I would get someone who is quite enthusiastic, they would tell all their friends. So, then I would get phone calls on my cell phone from the friends of friends of friends. I mean, I didn’t even really have to try to recruit, which was amazing. So, the sense of community was really good. It was very difficult, I’ll say, though in writing it up to try and keep anonymity because everyone does know everyone so you have to be really, really careful with the stories, right?
Andrea: What also I like about this project is that idea of giving them tablets. So, we had a recent research study we were trying to do and the REB came back to us and said that it wasn’t feasible, because we were going to be giving seniors technology and I’m like, “Well, that’s a little bit last century,” like older adults can use tablets, there’s no reason why they can’t or why we can’t teach them or support them in using them. So, I like that you were able to use the technology and they embraced it. That’s really amazing.
Michelle: They did and I had great IT support, so the IT support set it up so that they could only go on certain functions. So, it was really user friendly.
Andrea: In the cognitive status of the … did you include people who had cognitive impairments or various kinds in your study as well?
Michelle: I didn’t specifically ask that. That wasn’t the inclusion or exclusion criteria, but as far as I could tell, I don’t think that was the case for any of the individuals. They’re all very social and very clear so I don’t think so. Yeah, they were just really enthusiastic but then I realized later after … when going through the study, that a lot of the seniors had already taken part in arts throughout their lives. So they were either closet novelists or secret painters, or they had some kind of affinity for the art. So I think there’s a self-selection going on in the sample but I didn’t realized.
Andrea: Right, they really knew how to express themselves through arts beforehand. They weren’t intimidated by that aspect of the study that might intimidate. So, the idea of older onset homelessness is I think a really interesting concept and something that I have also encountered and grappled with. Mostly, in my experience in the context of people with cognitive impairment, so I come across them in the homeless system or people who are in and out of hospitals, who are inadequately housed because they are lacking the sort of cognitive capacity to sort of pull together and organize what they need to do in terms of getting themselves housing, or they’ve lost their housing.
Andrea: They were forgetting their rent or not paying their bills or things were falling apart in various ways, because of some of the cognitive deficits that they had, which is very unfortunate, because fundamentally, they probably could have lived longer in their existing housing or been supported in those environments, if it had been recognized earlier on that this was the issue that they were having. So, I’m interested from your perspective, like what you learned about this late onset, loss of housing and what the sort of contributors were.
Michelle: Absolutely, and there were definitely gender pathways, as I mentioned before. So, for the women in this study, it was obviously poverty and that was mostly attributed to divorce, separation, leaving abusive relationships, et cetera. So, for that particular generation, there’s an old saying, women are one man away from poverty and it really worked itself out with the participants. So, it really was poverty. There was renoviction though, and because Hamilton is a city where rents and property values are on the rise, not to the extent that Toronto is, but it is getting very expensive here. So a lot of the lower income rentals, they’re very hard to secure and keep, to get and then to keep.
Michelle: So, there’s a whole process that the participants would tell me about and it’s absolutely heartbreaking. It has to do with bedbugs having to spray, being taken to court for non-compliance, for not keeping their places clean, quote, unquote, where they told me many stories that their places were spotless, and it seems to be used as a tool or a trick to get people out of their apartments so that they can obviously renovate them a little bit and then increase the rents, right? So that’s something that’s provided and it’s very difficult to hear those stories. Well, difficult for them to experience them, because it’s just absolutely terrible behavior on behalf of the landlords.
Michelle: The women, it was really poverty that led them to this route and leaving a relationship and not having the social network to have a child who lives in the city to have to go stay with them, et cetera. So there was one participant who … she was homeless for a couple of months after she left an abusive marriage but thankfully, she went to her church and they were able to find her a caseworker and she was then placed in the senior housing. For the men in this study, there’s also poverty as well but more addiction and mental illness that they talked about. Now, of course, I haven’t verified their charts and I don’t have their medical histories, but this is from their information.
Michelle: So a lot of gambling addiction, so difficulty keeping finances and a lot of alcoholism seem to contribute so then intermittent employment as a result, right?
Andrea: The thought of an older woman who’s lived in her apartment for 20 years and has created a community in the building where she’s lived and is so settled and has all her life memories, then to find yourself evicted by her landlord and that is quite devastating. It’s certainly, I guess a scenario that’s not that uncommon in Toronto as well. I imagine that it happens … I’ve heard of it happening as well because I guess that this is where like the idea of community comes in and it’s nice to hear that they’ve been able to create some kind of a community, because these are people who have very small social networks, for the most part, right?
Andrea: Because if they had the sort of large supportive networks around them, they wouldn’t find themselves necessarily in these same situations, they would have the supports they need to well, fight the landlord or make sure their bills are being paid or they wouldn’t be on the streets. Yeah, so obviously, seniors with small social networks need to find communities that are like that, that provide for a sense of community and support. I think that’s really … like, anyway, the description of being able to have tea with them in the common room is a lovely … I know they have so many friends, that they can bring all their friends to come and join in the study together.
Andrea: In the settings where I have been working recently, places like retirement homes and long-term care homes, I think they struggle a lot more in creating those kinds of communities, in part because of the cognitive status of the residents, makes it more complicated to foster relationships between the residents. It’s this weird sort of paradox, right? So like a long-term care home is full of people. People all around but it’s probably one of the most lonely places on earth that people all feel very alone, particularly in the pandemic and I’ve been doing a lot of work right now around this idea of how we can protect people from an infection control perspective.
Andrea: Create worlds that are safe, places that are safe but that are also … allow for social engagement, allow it to maintain the social bonds, because people in long-term care have so few social bonds to start off with, that you sever those few bonds, then you’ve basically isolated them profoundly. So, that’s been a real challenge because these environments as much as we like tried to make them dementia-friendly and inclusive for people with various degrees of cognitive impairment, we’ve just fundamentally not done that. They’re not dementia friendly in many ways, they don’t have that culture.
Michelle: So, the participants, I kept in touch with them over COVID and still in touch with them, even though the study is really wrapped up and they were very isolated at the outset of the pandemic, because the common rooms were closed, and the wifi was shut off in the buildings in order to discourage people from congregating.
Andrea: My goodness, so they cut them off electronically during that time.
Andrea: That’s not a very good policy decision.
Andrea: I mean, if I didn’t have my internet during the lockdown, I would have lost my mind. I mean, how would I have had my Netflix and my … that’s amazing.
Michelle: I know. Many of them have their own cell phones and so they would text me. So, this is where I heard of this and I also set up a Facebook group for them but of course, only a few could get on it through their phones. They managed to … some of the women in the group are very regular churchgoers and their church paid for their internet connections, which is really interesting and that makes such a huge difference for them. Yeah, so that has been difficult but yeah, the wifi has been restored in the main floor though. I think they advocated for that. It took a good six months.
Andrea: Are they allowed to use the common areas now?
Michelle: At a distance and masked. So, I guess they sort of launched a campaign and said, “Listen, we can physically distance, we understand. We know we’re at risk. We’re older adults. We really are concerned about our health, and we can do this safely and properly.” So they finally turned it around.
Andrea: Yeah, that’s quite disempowering, really to say to them, we don’t trust you to be safe with each other and we don’t trust you to take care of your own health and so, we’re going to create these rules and structures and that’s … ideally, there would have been a more participatory kind of approach to it, right? Like let’s do some shared decision-making, how can we make our building more safe? What would make you feel more safe or what would be more safe and how can we all contribute to this? It’s amazing, like that’s even true in places like retirement homes and long-term care homes, that we’re not really giving people choices, even them take risks that are really tiny, but that are so fundamental to their wellness, right?
Andrea: For example, retirement homes are telling residents, they can’t go for a walk around the block. They’re really confining people within the building, in the high-spreaded areas right now. There’s some people in retirement homes, are able to follow simple rules. They’re able to understand that they should wear masks and not stand too close to people. So, it was almost like, we’re infantilizing these older adults who are in these congregate settings, with the idea that I guess we’re protecting the whole community but really not giving them any power or disempowering them in a really fundamental way.
Michelle: I agree and that came out in the interviews, the phone interviews that I did because I could go in person anymore in COVID, and they mentioned feeling isolated or not being a part of these decision-making processes within the building, et cetera. They also said, “You know, I’ve been around for a while. I have a lot of resiliency and that’s not being recognized. You know, I’ve been through a lot.” I mean, especially if you’ve been homeless. I mean, these are really, really difficult experiences and they’ve overcome these experiences and they felt that that was not something that was being recognized by the buildings, but also by society at large in the newspapers. The way the narrative was surrounded older adults in COVID.
Andrea: Yeah and I guess there’s also something strange about … so this is all housing, this is people’s own homes but we still sort of treat them … especially seniors housing, so whenever we group seniors together in places like retirement homes or seniors … it becomes something different. It’s not like, it’s their own home anymore. It’s like, we’re housing them and therefore this additional layer of control or … Anyway, I’m not exactly sure how to articulate that, but people just really forget that people who live in long-term care, who live in retirement homes, when they’re in their apartment, they’re in their house.
Andrea: That there’s a certain degree of privacy and autonomy that has to go along with that or treating them like institutions more, because it’s full of seniors, it’s an institution, not a home and that’s a real problem.
Michelle: Absolutely. So is there any co-design that’s going on with their activities or their groups?
Andrea: At the moment, I mean, their activities in groups are really severely restricted in a lot of these settings. So, it’s a lot of … I mean, it’s really sad, people who live in long-term care, there’s a lot of variability in terms of how stimulating and personalized their spaces, depends a lot about how they landed there and how much … again, about what their social networks are. Did they have a family that helped them to move and help them to bring their furniture and their pictures and pay for their television, pay for a telephone. Then, there are people who live in long-term care who have none of that, who live in a bare room without those things.
Andrea: You can imagine being confined to a space that’s like that for most of your day, with very little sensory stimulation at all. Especially with recent announcements in our province that have made it clear that they are kind of throwing the towel in with the pandemic. It just seems that it’s inevitable that this is going to continue in a way, sort of for an indefinite period of time. So, the imperative now is how can we find some way to support people who are being asked for their own protection, which is actually … Sorry, I’m going to go get on a high horse, right? This idea that they’re being isolated for their own protection. Really, they’re being isolated so that we can open up the restaurants, right?
Andrea: That’s what we’re asking them to do. So, finding the imperative to how do we support them within their homes in a way that will give their day to day life, meaning and purpose and joy, and a sense of security, and all of these things that people usually get from not being in their homes but being out and around people.
Michelle: That’s very challenging and as you said, I guess some particular individuals have more resources than others so they’ll have their families, buy them iPads and they can do all these things, but others don’t.
Andrea: Yean and then which case, they’re relying on the staff in the nursing home to provide them with activities, to provide them with stimulation and this huge variability from place to place in terms of the culture, the capacity, even things like staffing levels, the experience of the staff, the skill level of the staff, varies enormously, the culture of the institution around how they care for people with cognitive impairments and dementia. So you’ve done your study in one sort of seniors housing building there and do you have any sense of how common that is across different kinds of seniors housing in Hamilton or …
Michelle: I went to three different buildings.
Andrea: Three. Great.
Michelle: Yes, in three different neighborhoods, in three very different buildings physically, so built in different eras. It’s amazing how much this space dictates the social interactions. So, one of the buildings that I went for tea so often is one of the newer buildings, and it’s much more open and a large, large open spaces. Yeah, the buildings are different and the space really does matter. So, it would be really nice to co-design the common areas in these types of buildings for the older adults, but what I’m curious about is … and you’re mentioning the policy priorities, how does someone with your expertise change the policy agenda? How do we do that?
Andrea: Yeah, I mean, there’s a lot of people right now who are really trying to lend their voice to advocate for seniors and obviously, there’s people doing it in all different kinds of ways. There’s people who are setting legal challenges, constitutional challenges to the kinds of regulations and rules that have been put in place in terms of restricting their freedoms. Then, there’s a fairly decent group of physicians who work in these different settings who are advocating around the effect of these measures on people’s health and mental health, from my perspective. So, we’re really seeing an increase in depression, an increase in what we call responsive behaviors.
Andrea: So people exhibiting for example, agitation or distress in a variety of different ways, because they are frustrated with their situation, where they’re finding themselves. I found an increase in sort of psychosis, so people developing paranoia about what’s going on. The staff are in some ways trying to harm them by confining them. They’re being imprisoned for example or that their family members have died, trying to make sense of why they haven’t seen their family in so long. So, we’re kind of pulling them together all of this different evidence. The other thing is the physical deconditioning.
Andrea: You can imagine being left in your room for … maybe this is also true of the people that you’ve been working with, that you … when your level of physical activity drops, when they’re not going out and walking and doing all of these things as much as they used to then that’s a real hazard to older adults to their health, because a lot of them are quite precarious in their health, they may have some frailty. So, any little decrease in the amount of activity they have can sort of be a tipping point. So especially obviously, the long-term care environment. So, we’re trying to advocate, we’re trying to have our voices heard at the provincial level where the decision makers are happening, but obviously, there are also some very loud voices from other perspectives.
Andrea: People who are concerned about our economy, et cetera, who I think fundamentally don’t see the seniors as major contributors to our economy and don’t seem to care as much about them. So, yeah, it’s tricky. It feels like a 24/7 job, also constantly responding to all of the information, the data, the policies that are being made and changed on an almost daily basis and trying to bring some evidence, and some advocacy to encourage that these decisions are made in a more rational way, in a more ethical way, in a more inclusive way. I was wondering, can we talk more about the design? I know that may be too controversial, but I think that that’s … because obviously, there’s like design at multiple levels in terms of like just the physical structure, but also the design of the community, the supports that are in place in these different places.
Andrea: The social environment, yeah, you can decide the physical environment, but then also design the social environments. I’m interested to hear more about that and from your perspective.
Michelle: Well, it was really interesting to see the difference between buildings and the different programs of the different buildings as well, and where the residents were more active. So, the residence in some buildings, almost tried to co-design it themselves, right? So there was one particular building where there’s a food bank that the residents established and run, they ran but then it was shut down because of COVID. That really worries me because food insecurity is a huge issue, and a challenge with low income seniors, right?
Andrea: So, this is another … one of things that drives me crazy, so it was a rationale of closing a food bank because food banks are open in the city now. There’s no reason … they’re still open, so why couldn’t the building have their food bank?
Michelle: Too much contact, so they were worried about the risk of spreading COVID.
Andrea: Yeah. I feel like that this is the wrong … it’s not, what do we need to shut down? It’s how do we adapt our existing programs and services in a way that can address infection control?
Michelle: Exactly. They could have designed a delivery service because everyone knows everyone so well. They know what they eat and to have local donations and what they were really trying to have is more vegetables at the food bank, which are expensive and that was really great. So, they know what people eat, so you’re right, they could have maybe had the opportunity if they had gone to them and said, “Okay, how can we redesign this for our current circumstances,” that it could have kept running, because then you’ll have nutritional deficits with the residents who can’t get out, because you’re right, some people are very active and as seniors who are active, have been going for long walks because that’s a safe activity. The others, I have one participant who has COPD, and she’s not getting out, right?
Andrea: So, it becomes also like a fairness and equity issue at the level of like, we’re opening the restaurants but they can’t have their food bank. How do we address the needs of the low income residents of these buildings and make sure that we’re not overreacting or setting unnecessary barriers to them doing the community building that they need to do in the context of this pandemic? Because it isn’t that like everything is equally risky. There are a lot of things that we can do that are very low risk. I was just doing a talk today when we … I can’t remember the name of the person who put this out but they did this amazing illustration, which is like slices of Swiss cheese.
Andrea: The idea is that from an infection control perspective, if you just did one thing, like if you just gave everyone masks and that was all that people were doing, there’d be lots of holes in that, right, and people … but then when you do masks and hand hygiene, and then add social distancing and then, you’re piling on the Swiss cheese and then, there aren’t so many ways through, right? That you end up building up, apparently robust way of allowing people to interact. Anyway, so it frustrates me when I hear that we’re reacting … because I think what we’re neglecting is that these measures that we’re putting in place to prevent infections have harms in and of themselves, right?
Andrea: That can be as bad as the risk of infection. Anyway, and so, there’s a question around design, and so people are saying, “Well, now we need to design long-term care homes for infection control purposes. We need to like, put in those like prison walls where you’ve got like plexiglass, so that people can have their visits and be protected and we need to like make boxes in the dining hall.” I’m like, “Well, you know, I’m not sure that that’s the design solution for this particular problem. I guess you could hermetically seal each person into their little bubble, that would be infection proof,” but I’m not sure we’re really addressing the wider issue of how we support our seniors through this time, let them live.
Michelle: I agree, but they probably haven’t been calling in designers to do that. Have they?
Andrea: Call the infection control specialist?
Andrea: Put plexiglass everywhere.
Michelle: We need more designers to find a place in that system. That would maybe help a little bit.
Andrea: Yeah. Yeah, I think so because really, it’s about fresh air and space, and lights, and there are some really lovely long-term care and retirement homes that have been designed. Then, there are some places that are really purely functional, that are just there for warehousing people. Anyway, so you’re right, there’s a lot of money going in to long-term care right now. I don’t know you’ve heard all the announcements from the minister that they’re building, they’re going to build, they’re going to build. They’re trying to retire all of these very old buildings that have these three and four bedded rooms, that obviously have a lot of problems with them from an infection control perspective.
Andrea: So, they’re pouring all this money and there’s this like speed behind it, which is really, not really lending itself to some of this important information. They’re again, just pulling out the blueprints of the previous 20 homes that they built and just building them again, and again, without really taking into consideration I think how we could do it better.
Michelle: That’s definitely a lost opportunity, because they should engage in a co-design, involving older adults in this and they can obviously maintain infection control as well. You can do them in tandem. It’s not like they have to be mutually exclusive, right?
Andrea: Yeah. Yeah and there’s I guess, so much of the economies of scale in these things, right, that they’re trying to save money by making them big and making them efficient in other ways that are not focused on the quality of life of the residents, I think and that’s a bit unfortunate.
Michelle: That’s a bit disheartening to hear.
Andrea: Yeah, I’m interested to know, in terms of your research participants, how they … I know that your project was about housing, but if you’ve got a sense of what gave their sort of day to day life meaning and purpose and how that came across and what they sent you?
Michelle: Absolutely. Well, one of the things that they were focused on very much is aging well, which was the phrase that they would use. So, they would try to watch their diet within their means. They would take walks outside and exercise if they could, and there’s social interactions. As we mentioned before, they don’t have a large social net because they really wouldn’t have been in this situation if they had. So it’s building the relationships in the building but those can also be a bit precarious as well. There can be gossip. There were always posts in the tablets about the local gossip of the day, but they managed to work around that. I really do believe it was the community that engendered a sense of meaning for that.
Andrea: Yeah. So, I don’t know how we … outside of places like so that … in a sense, the community was supported by the fact, they were all living in this building together and they sounded like they probably had a certain number of shared experiences, like a variety of different reasons. In the context of this pandemic and even outside of that, there are so many people out there in the community who are in their apartments and who are profoundly isolated, socially and otherwise. So, I don’t know what the solution is but I feel like there must be a design solution to that as well. How do we bring seniors out in a way that allows them to be with other people and create meaningful relationships and also contribute in meaningful way.
Andrea: I think what’s lovely about these kinds of research studies is that seniors love participating in research, because it does give them this sense of contribution and yeah, I really fear that we’ve … by sort of locking people away, during this pandemic, we’ve taken that all away from them. We’re not allowing them to contribute in any meaningful way to society. I don’t know the answer to it but I’m not sure how we fix that.
Michelle: Well, I think it’s a sense of, we have to rebuild physical communities but also virtual communities. I think there’s an opportunity there as well. Now, what those look like exactly? I think it would depend on the situation obviously. I have some students working on that right now. An inclusive design for their MRPs. Very exciting work and it’s amazing what they are coming up with. With augmented reality and storytelling platforms for older adults to join up and find commonalities. So, I think technology may be a way but then of course, you have the question of access and it has to be equity driven, right? We had to figure out that angle of it. It’s very important.
Andrea: Yeah. Especially when they can turn the wifi off at a moment’s notice, right, like at that-
Andrea: Yeah. It’s kind of like turning off the electricity nowadays. It really should be considered an essential utility for seniors in a lot of ways.
Michelle: I agree, almost a human right in a sense.
Andrea: I was listening to a podcast. I’m trying to remember the name of it now. It will come to me in a moment. Yeah, I was listening to “Reply All” and they had done a podcast and it was an unrelated topic, it was about this phone sex line and this sort of company that had created it. As part of the podcast, the host had called into this phone sex line to see who he would meet there. I almost burst into tears when this happened, but he came across a woman who lived in an assisted care facility in the United States. So an older woman, who was isolated in her room, in an assisted care facility and who had very few social contacts, was using this phone sex line, to just sort of reach out to the world and find out who was out there. To have this … she said that she would just listen sometimes just to hear people’s voices.
Andrea: That this was, for her, one of her few outlets, her social outlets was this line. So, that was like, “Oh, my goodness, you know, how sad that is and how much we’re failing in terms of supporting seniors and finding these alternatives, like virtual communities,” telephone community would be just as … seniors love their telephones. My grandmother was over the moon, when I would call her. That we don’t have to be fancy, it can be super simple.
Michelle: I agree, but I also think we have to take a step back. So, the seniors who are in the rent-geared-to-income situation are actually okay, and safe and secure, to the point where they can tell their stories now, but it’s the people in their journey to that space … that I’m obviously concerned about the participants in my study but very concerned about the people who haven’t gotten there yet. A, there are not enough spaces and they can’t always find their way there. So, one of the things that I’m hoping to do is a systems redesign with participants and with the municipal government and private providers, rental providers as well, to try and figure out how we can … and I don’t have the answer yet, but a preventative systems redesign so that we can catch people before they end up homeless for the first time when they’re an older adults, right?
Michelle: How do we deal with that segments of the population because they’re not even counted, so to speak, right? They’re not even part of the record, really?
Andrea: Yeah, these precariously housed people. They’re … Yeah.
Andrea: Yeah. Especially now, I mean, this is just the worst time to become homeless. There’s so few. Homeless settings are obviously not adopted at all for people who are older, who have mental health problems, who have cognitive impairment, for example and it’s also … when someone presents, who’s homeless, who has cognitive impairment, it’s often a given that they get shunted into a place like a long-term care home, that’s sort of … what’s thought to be the most but if they had been adequately supported in their apartment, they may not have needed to move into that setting. That they came to this crisis point, like you said, there’s a lot of factors that come into what brings someone to a crisis when they’re in the community, in their housing and so, how do we intervene and identify those people earlier?
Andrea: It was interesting, in what you were mentioning earlier, that a number of people had actually found their support through faith-based organizations and that those were kind of filling in the gaps in those sort of social support network. So, those people who don’t have those faith-based connections, what fills the holes for them? What’s the substitute?
Michelle: Exactly. I mean, it’s great that they found that support, but the state has a role to play there as well, right? Especially for individuals who are not religiously affiliated.
Arezoo: Talking about the design, I just want to know that if any of you think that a multi-generational housing can help in situation like this, because there’s lots of talk about it. There is lots of project going … especially in BC, trying to bring seniors to live with other generation, with students, with kids, is that something that you think may help?
Michelle: That was one thing that actually was really interesting about the buildings that I’ve been … the participants living for the study is that they are senior only buildings. So I would say about half of the participants mentioned that they would like to live in a multi-generational building. I did ask why there was a genesis of just the seniors buildings, and I was told that the ideology at the time was it was to protect the seniors, because they were vulnerable.
Michelle: The individuals who … the participants who mentioned that they would like to be in a multi-generational setting, so they miss seeing small children running around. They miss seeing young families or they missed that kind of energy and livelihood, and the contributions they could make in those types of relationships. So I think it’s something that should be pursued further.
Andrea: I think that’s also … the fact that it’s this low income housing that there is a stigmatizing of the low income people. So, this idea that somehow if you mix low income younger adults, with older adults, that they would become victimized in some way by the poor people. I don’t know if that’s necessarily true or what there is but I think, I agree that there is some value too multi-generally, but there’s also this complication now, right, which is that with the COVID, the situation, there’s this idea that we have to lock our seniors away. I don’t agree with that, obviously but I think you would find it harder to promote these kinds of multi-generational settings until the pandemic is resolved.
Andrea: People are going to feel that we have to keep the … Yeah, again, it’s this sort of discrimination, to keep the young and vibrant and let them carry on their lives and do things that are risky and then, let’s put the adults in a place setting that’s low risk, away from these higher risk younger people.
Michelle: That’s another threat of the preconceived notions of people who are older, like if they can’t use technology, they have to be protected in these ways and all of these hegemonic conceptualizations drive policy and drive how healthcare is delivered, and it’s just … or care is delivered and I think those fundamental conceptualizations need to be questioned and the counter-narrative needs to be creative.
Andrea: I totally agree. Yeah. What is the counter narrative? The counter narrative is, I mean, obviously generated from the seniors themselves, but it’s along the lines of we’re vital, we have lot to contribute, we can take care of ourselves, we’re resilient. I think that’s basically the information that’s missing.
Michelle: Absolutely and that we’re strong, and we have lived experience, and we’ve overcome difficult experiences. So we have reserves and the resiliency that you’re talking about. Absolutely, I think that has to be rewritten.
Arezoo: Maybe because we just put them all under the name of seniors, and then, we don’t personalize the situation for them, so not all seniors, because of their age, they have this … they are not able to make a decision. I mean, right now, two seniors are fighting for the position of presidency in the United States. They both are capable to run the country, so it’s not about the age, right? So every … you have to look at any person and try to really make it not … as Andrea said, it shouldn’t be an institution to run this. It should be people who have the ability to do everything, so they can run it. So, if someone may be an older adult, but it may be really healthy, and this COVID may not really affect them, physically but mentally can affect them.
Arezoo: So, we should find a way that bring that into their account on the table when they make a decision in the policy, I think.
Michelle: I agree and I think the counter-narrative also has to make space for variability, because you don’t want to replace one set of stereotypes with another set of stereotypes, right? So you do have to show the breadth and the depth of people’s experiences and that’s really important, and that’s difficult to craft in a public way. Yeah, I think that this is one of the reasons that actually policy is held back. I think it’s subconscious cultural context and until you change the cultural conceptualizations, policy actually won’t really change as much as we would like it to.
Arezoo: Maybe bring the seniors to be a decision-makers, when it comes to making the policy for them, right, and not someone … so someone who experienced it, someone who has an older age, they can be the one who make the decision for the seniors and not someone young and who doesn’t have any idea.
Michelle: Absolutely, I just had an article released in the Journal for Dementia. At the very end of the last paragraph, I argue for policy co-design, and to have greater representation of lived experience at the table and I think that would make a difference. You have to have substantial representation. You can’t just have token representation. You can’t just have three or four people. It has to be deepened engaged process and that takes time, and I guess, in the world of politics, people want to see results in a short period of time. They don’t want to really do all the work involved because co-design is work but it’s good work. There’s a lot of tension, it’s not always an easy process.
Andrea: The pandemic has set us back on that a lot. There’s this idea … So it’s so top down right now, that it feels like all of the progress that maybe we had even made in this idea that seniors or really anyone to be able to participate in decisions that affect them, has kind of been in lost in the haze to make decisions and be responsive. I think, well, maybe that made sense in the first wave. We’ve had a long time now, we’re living with this to be more thoughtful and reasoned and include more voices. Yeah, that’s not happening yet in any … yeah.
Michelle: No. Unfortunately, I think we really have to be on our guard to make sure that we don’t regress and that people don’t use this as an opportunity to leave out important voices.
Arezoo: Now, staying with the people with dementia, I mean, we’re talking about seniors but people with dementia may not be seniors yet. Then, how we bring them into the policymaking, decision-making?
Andrea: People with dementia?
Andrea: Yeah, the Alzheimer Society has been doing a lot of great work on that recently about how we can involve people with dementia, because obviously, dementia is a progressive illness, but there’s lots of time, it’s a slowly progressive illness. People develop symptoms and then may have go on for decades before they get to the more advanced stage of the illness. So, there are lots of opportunities for people to talk about what’s important to them and where they see themselves in the future to contribute in various ways during the early stages of the illness and ways of engaging people in conversations about what’s meaningful and valuable to them, what they think will be meaningful and valuable to them when they’re at the later stages, which is obviously hard for people always to be able to reflect on.
Andrea: I think that we have enough information now from various processes to know that we can involve people, even with cognitive impairment in various types of decision-making. So, I don’t think that the cognitive impairment has to be even a barrier there. I’ve worked with a lot of really articulate and vocal advocates for people living with dementia and they’re out there.
Arezoo: Yeah, we need to keep them in the workplace as much as possible. So there should be a conversation, so people don’t have this stigma about dementia, Alzheimer. If someone is diagnosed with dementia, they can still work. There may be some adjustment. Everyone has to know about that and then if they would be open to talk about it, then it’s going to be … they’re going to keep them longer into the workforce, so they can afford to have a house or place to live.
Andrea: Yeah, it’s all wrapped up in this idea of dementia friendly communities, addressing the stigma associated with having cognitive impairments, creating ways of … adaptive technologies and solutions to allow people to participate fully in day to day life and contribute in whatever way is important to them to contribute. There’s a lot of places that have signed on to this idea of creating dementia friendly communities and I think it’s another victim of this pandemic, right? The priority has shifted to keeping people with dementia alive and we’re not even doing … we’re not all that successful at that either.
Andrea: There’s a horrible statistic, I don’t know if you guys heard this, but 4% of all older adults in the UK with dementia died in the first wave. Can you imagine like wiping out 4% of a population of people?
Michelle: I hadn’t heard that. That’s terrible.
Andrea: Yeah. So, there’s huge numbers of people in their long-term care settings, for example, who died and also in other places in the community. I don’t think people really realize that there’s actually a kind of, the pandemic is actually … it’s killing large numbers of older adults with dementia in these congregate settings. So, I understand the imperative to want to make these places safe but it can’t be at the cost of people’s quality of life, people’s ability to live. The average life expectancy of someone in long-term care is two years. So, if you’ve locked them in their room for six months, they’ve lost, a good chunk of their remaining life expectancy.
Arezoo: Yeah. So there’s … You always say in the design community, in architecture that we have to learn so much about life and design from this pandemic. So, I think this is one of the things that hopefully, we’ll learn at least. I mean, as you said, it’s not going to happen, because everyone wants to make a decision right now. Hopefully, we can just have a better future for people with dementia when they get to the older age, because we know that that number is going to just go up and up as we go ahead, because people live longer and dementia is still something that everyone should be concerned about. Is there anything else that you think we missed, anyone?
Michelle: Sorry, I’m running out of steam, because I’ve been talking all day.
Arezoo: I know.
Arezoo: 40 minutes is a long time to talk, so it was very interesting and I know that we’re going to put this podcast out and everyone says that, “Oh, this is interesting, and we have to talk more about it.” So, because it’s always a good conversation and we don’t have an answer for so many of this stuff that’s happening. So who knows, we may come back and continue on it.
Andrea: There may be people out there who have answers. So you just need to find them and then bring them on next, to answer some of these questions that we brought up.
Michelle: Yes. Exactly.
Arezoo: Yes, that’s a good idea, especially someone in Policymaking.
Michelle: That would be a wonderful idea. I’d love to listen to that.
Arezoo: Okay, so thank you both very much. It was very interesting talk. I hope you enjoyed it because I enjoyed it.
Kaveh: It was the 14th episode of quantization; we want to thank Michelle and Andrea for being part of this conversation. And we hope to hear your opinions and comments on this topic.
For more episodes, information and full transcripts, please visit our website, quantization.ca.
Especial appreciation to Marshall Bureau for scoring all songs.