Episode Transcript
[00:00:02] Speaker A: We see often people go into hospital for a couple of days and they were coping at home, and then all of a sudden they start to deteriorate. Part of that is to do with an environmental cognitive overload where the working memory and the executive function just can't cope. And then what you start to see over a period of time, unfortunately, is there's a whole pile of cascades that can be triggered, such as cortisol being released into the system, which then further degenerates the hippocampus and other parts of the memory so that it becomes more difficult to interpret and succeed within an environment.
[00:00:48] Speaker B: Welcome to the Age of Aging, a show about living well with an aging brain. Produced by the Penn Memory center and the Michael Nadoff communications hub. I'm Terence Casey.
[00:00:58] Speaker C: And I'm Jason Karlewish.
[00:00:59] Speaker D: And I'm.
[00:00:59] Speaker B: And welcome, Jason, to your first co host duties in our Age of Aging studio.
[00:01:03] Speaker A: Yeah.
[00:01:03] Speaker C: Cool. It's great to be here in the Naidoff Studios recording with you.
[00:01:06] Speaker D: You know what?
[00:01:06] Speaker C: I just came from my house and I bought along a folder. I'm going to tell you what's inside this, but first I want to ask a question of you, which is, have you ever been in a nursing home?
[00:01:15] Speaker B: I have. My clearest memory is from my grandmother when I was a kid.
And it was kind of your classic setup of there were apartments and we would walk down home. Hallways, a lot of light colors, pastels. Past the shared living space. A lot of adults in wheelchairs.
[00:01:31] Speaker C: Let's talk about these, quote, apartments. They were single rooms or double rooms.
[00:01:34] Speaker B: Yeah, these I would not call apartment. There are two. Two adults in a unit.
[00:01:37] Speaker C: All right, so two people there. Not a couple, but like you and someone else.
[00:01:41] Speaker B: Total stranger.
[00:01:41] Speaker C: Okay, fine.
[00:01:42] Speaker D: So that's.
[00:01:42] Speaker C: So it's really not an apartment. It's kind of a weird kind of.
[00:01:45] Speaker D: Okay.
[00:01:46] Speaker C: Long hallway.
[00:01:47] Speaker B: Oh, yes.
[00:01:47] Speaker C: Kind of bleak.
[00:01:48] Speaker B: Oh, yes.
[00:01:48] Speaker C: Yeah. And in the center of it, there's this area, this space where they dine.
[00:01:52] Speaker B: Yeah. Dining is generous.
[00:01:55] Speaker C: Most exactly. Because it's like kind of a bleak room with a bunch of tables. Yes. And to get there, you gotta be generally wheeled there because the distance from room to there is quite long. And maybe overlooking it is like. What's the nurse's station?
[00:02:07] Speaker B: Yep.
[00:02:08] Speaker C: Right. And it's definitely got like a. Like a barrier.
[00:02:11] Speaker D: Oh, yeah, yeah, yeah.
[00:02:12] Speaker C: And to get into it, you'd have to like unlock maybe like a swing door.
[00:02:15] Speaker B: A lot of feelings of confinement.
The secret button to get in and out a lot.
[00:02:20] Speaker C: Not very home. Like, exactly I agree.
[00:02:22] Speaker E: All right.
[00:02:23] Speaker C: I want to tell you a story, okay. About a nursing home that caused the lame to walk, the agitated to calm down, and overall, a sense of peace to descend upon the lives of persons living with dementia.
[00:02:34] Speaker B: This sounds miraculous.
[00:02:36] Speaker C: It is. It is. It's a story of not a pill that made them walk or a device or physical therapy or some other magical medical treatment, but actually the decisions made by a very courageous man who was tasked with building a new nursing home. And what Steve mcaleally did, that's his name, is he said, I'm not going to do what I'm supposed to do. So what he was supposed to do, he's in charge of the Methodist home in Tupelo, Mississippi. And what he was supposed to do was build yet another, just like we described, unit. Because that's what you do for nursing homes, right? Especially nursing homes for persons living with dementia.
[00:03:11] Speaker B: Right? They're safe.
[00:03:12] Speaker C: They're safe. They're. They seem hygienic. They're like a hospital. Anyway, so Steve's about ready to do this, and he comes back, actually, from a trip. And the trip is he hears a talk by a man named Bill Thomas who's advocating this idea called the Eden Alternative, a different way to design a nursing home. Steve comes back and he says, don't do this. Don't build this dorm, like hospital, like setting. And instead, what he says is, we're going to build a home. And this is what he does.
I want a central living area with a fireplace. I want 10 rooms off that central, single rooms, not double.
And then very near that hearth is the table where all 10 people, plus staff, can sit to have their meals. And very near that table, I want a kitchen, and I want that kitchen accessible. And a kitchen is to prepare the food.
And this guy, he's a lawyer, he was a litigator before he went into this. He managed to get this through the regulators in the state, federal, and he builds the space.
And this is where he said a peace descended upon it. Because all of a sudden what happened was the folks who had advanced dementia, who had not been walking for months, years, and instead were, quote, wheelchair bound, actually started to walk.
Why? He thinks probably they were drawn to the smell of a meal being cooked at a table where people are being seated to eat that meal. And a distance that isn't that long hallway from your room, but rather a short walk from the door of your room to your table to have your dinner. They had an outdoor garden area. Granted, it was fenced in, but the fence you could see through and you could easily walk in and out of that. It was all one floor.
So too, those who were agitated and otherwise, they just began to calm down because all of a sudden they went from this kind of fluorescent lit, very unhomelike setting to a place that kind of reminded them of the feeling of being at home. So essentially what he did was not with a pill or a therapy or a surgery or a scan or any of the other things that we kind of think of of a biomedical solution to living with advanced dementia. He used design to transform the well being of all these people.
[00:05:29] Speaker B: So I feel like we're missing a but here, because this isn't a universal design.
[00:05:34] Speaker C: It is not. The greenhouse model has spread throughout the United States, but slowly it has spread, I will point out. But Steve says 90% is the design, 80% is the staff, because they have a model of training the staff to be there cooking the meal with the people, to be there interacting with them, et cetera, the residents. Okay, so there's no question that isn't just the space, but it is this new way of thinking about how to design a space for persons living with advanced dementia. Terry, I bring you this story because I have a task for you.
[00:06:04] Speaker B: All right, let's hear it.
[00:06:05] Speaker C: All right, Jake, our man Jake is going to head out and I want him to talk to people who work in the space of design and architecture who can educate Jake, me and you about what it is that we need to do with thinking about the spaces we create. So let's have Jake head out, do a little work, find out what's new and the latest thinking about how to think. Think thoughtfully about creating a space so that an aging mind, particularly a mind aging with dementia, can actually live well.
[00:06:33] Speaker D: I love it.
[00:06:34] Speaker B: I think it sounds great. I look forward to hearing what he has to say. We're going to get to that in just a moment, but first, a word from our sponsors.
[00:06:43] Speaker C: Caring for an aging loved one isn't easy, but you don't have to do it alone. At Rothkoff Law Group, we guide families throughout New Jersey and Pennsylvania along every stage of your aging journey.
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That's R-O-T-H-K-O-F-F L A W.com Understanding longevity
[00:07:21] Speaker F: can better prepare individuals to make thoughtful
[00:07:23] Speaker D: decisions not only about their finances finances,
[00:07:26] Speaker C: but about their health and lifestyle, too.
[00:07:29] Speaker F: Matching lifespan with healthspan and pairing both with financial readiness has become a defining challenge. The TIAA Institute wants to help build longevity literacy to better support outcomes for all.
[00:07:46] Speaker D: If you live in the United States, you'll probably agree with me that aging is not a widely celebrated phenomenon.
Articles, online influencers, and advertisers constantly promote ways to slow down the process of aging, or at least try and hide it. If aging is associated with anything in our society, it's probably concealment.
[00:08:07] Speaker G: I mean, of course our culture incentivizes people to conceal their aging, which is why we have facelifts and why we have filler and Botox and why we dye our hair.
[00:08:16] Speaker D: Shannon Mattern is the director of Creative Research at the Metropolitan New York Library Council.
[00:08:23] Speaker G: I was an academic for about 25 years, and most of my work has to deal with how epistemology is made material in the world. So how we know things, what we care about, is manifested in the way we design our objects, our furniture, our spaces, our cities.
[00:08:37] Speaker D: For Mattern, concealment and containment are metaphorically rich in how they relate to aging, dementia, and disability.
In 2021, Mattern wrote an essay for Place's journal titled Concealment and Compassion, where she begins by reflecting on her mother's dementia and the ways in which people with dementia become more and more concealed in society. She notes in her essay that before we had the concept of dementia, those with the condition were contained to mental institutions considered to be insane by the rest of society, and that pharmaceutical drugs that alter people with dementia's behavior then became a more modern way of concealing dementia.
[00:09:15] Speaker G: But there have been several phases of people trying to find ways to separate out, to create a zone of exception for dealing with dementia patients. This goes back to the whole history of kind of separating difference from the ugly laws, not wanting to see disability, actually making it illegal to show yourself as a disfigured person in public, because people don't want to look at that. They don't want to be reminded of difference or mortality.
[00:09:38] Speaker D: This idea of concealment even comes up in the architecture we construct for people with serious illnesses.
This is Ann Marie Adams, an architectural historian at the University of McGill in Montreal.
[00:09:50] Speaker E: The idea is that the hospital purposefully looks like a different building type in order to soften the blow of serious illness.
So we've seen that through the 20th century, where hospitals have gone from looking like civic institutions, like little city halls or schools or orphanages from the 19th century and then after World War II, they look like office buildings.
And the idea was to portray the concept of medicine as a modern corporation, very efficient and no frills. And then around 1980, we see the turn to the Atrium Hospital.
Well, Penn has an amazing one, but is basically the idea of the hospital as a shopping mall or.
Some people think the new hospital looks like the airport.
[00:10:39] Speaker D: Adam said that while you may not be aware of it if you're not an architect, every space that you step into that's been designed by another person comes with it a web of symbols, references, and suggestions meant to communicate to you something about that space.
Often this communication happens subconsciously.
[00:10:57] Speaker E: I see architecture as a kind of form of fiction that it's a vision of how somebody wants somebody else to live.
It's aspirational.
So it's why buildings are changed so frequently. And of course, medical buildings are changed almost the instant they open.
[00:11:14] Speaker D: I promise we will return to design for older adults and people with dementia. But I want to add some more context to Adam's history of hospital architecture that I think says a lot about the way our own attitudes manifest in the things we design in the real world.
This is Fiona Kenney, a fifth year PhD candidate at the University of McGill School of Architecture.
[00:11:34] Speaker H: Basically, at the beginning of the 20th century, the hospital was somewhere to be avoided because of concerns about, you know, transmission of disease and hygiene and all of this. And so people who could afford to do so would prefer to have medical professionals visit them at home.
[00:11:52] Speaker D: Kenny explained that when hospital architecture went from looking like civic centers at the turn of the century to efficient office buildings Post World War II, it reflected a renewed public perception of hospitals as representing the cutting edge of science and human innovation.
Medical breakthroughs like antibiotics and vaccines made hospitals a place where people could be, quote, unquote, cured of their illnesses through the intervention of modern medicine. New medicines were the literal antidote to people's anxiety about their own mortality and thus medical settings in general.
As we discussed in our episode Transforming a System of Care, the new anti amyloid therapies for Alzheimer's disease had a similar impact on both patients and providers.
Not only do medicines relieve a certain hopelessness, but they also draw more people and resources to a field which drives more innovation.
But not every disease or condition can be cured. So how do you design a place for those who will have a condition until they die?
Kenny's dissertation looks at the architecture generated alongside emergent care philosophies from the 1960s to the 1980s, particularly the development of hospice and palliative care settings.
[00:13:05] Speaker H: Hospice pioneers the people who kind of dreamt up and, you know, progressed this new philosophy of care for people at end of life. They were really kind of rejecting the mode of care that they saw playing out in the hospital. It wasn't appropriate for people who could not be cured, who had different needs, and their families had different needs. And so the idea was that the best way to kind of reject this hospital approach was to go outside of the hospital.
[00:13:35] Speaker D: Kenny explained that architects for this new kind of care center looked to residential buildings for their design.
[00:13:42] Speaker H: People were scared of dying. People were scared of having even dying people in their neighborhood. There was kind of this idea of like, even if we are for this new care environment, even if we do believe that dying people deserve a different way of being cared for, we don't necessarily want it in our community. And so the domestic architecture was used to really soften the blow of this kind of integration into the community. So if the building is something that we recognize and feels familiar and kind of comfortable and safe to us, then we might be more open to these populations, these activities happening nearby right now.
[00:14:21] Speaker D: This isn't to say that using architecture to make something more generally acceptable is wrong.
Just as Ann Marie Adams said, all architecture is trying to tell us a story, to make us feel a certain way.
But the question that immediately arises is if concealment in design makes people who aren't sick feel better about the care that's happening around us, how does that design make the people being cared for feel?
And as Kenny explained to me, this is a central problem with designing for populations like those in hospice or with dementia.
Often, architects design these spaces without actual input from the people who would live in them.
[00:14:58] Speaker H: Another sort of relatively unique thing about them is that you wouldn't have an architect who had ever lived in a place like that.
[00:15:05] Speaker D: Architecture may partly explain the negative associations many of us have with the modern nursing home. Obviously, we place loved ones there because they require 24. 7 support. But they're also designed around these notions of containment, concealment, and separation from the rest of society.
A more modern example of dementia care comes from the Netherlands and has been dubbed the Dementia Village.
The original Dementia Village, called Dehokovic, features multiple residential buildings, public space, as well as other things you might see in a town like bus stops, grocery stores, and restaurants, all designed to look like places from a past time period. The catch is that none of those latter spaces are real. The bus never comes because you can't actually leave and the stores are attended by nurses disguised as other workers.
Annmarie Adams and professor of Gender and social justice and English at the University of Trent, Sally Chivers together wrote an article titled Deception and the Rise of the Dementia Village, where they put the dementia village in historical context and discussed some of its benefits and drawbacks.
Here's Annemarie Adams again.
[00:16:16] Speaker E: It's considered by many dementia experts to be cutting edge therapy. One of the benefits of the dementia village model is that the residents are more mobile, that they're not stuck in a room. They actually can go outside, experience different environments, experience unplanned things, joy of a, whatever, flowering tree or a sunset or whatever.
A lot of the psychiatrists think that's a huge benefit.
[00:16:47] Speaker D: The dementia village may also remind you of something else.
[00:16:51] Speaker E: We haven't talked about the Truman show yet, but of course the dementia village is very closely tied to the Truman Show.
[00:16:59] Speaker H: So Jim Carrey plays insurance salesman.
[00:17:03] Speaker D: This is co author Sally Chivers, and
[00:17:06] Speaker H: he's living a beautiful life in a lovely village type space.
And he doesn't realize that he's actually part of a television show and he's the only one who doesn't know. And so there is that same element of deception where a person with dementia may know when they go in or may know in moments, but of course may forget or may not entirely realize that the cashier they're talking to is actually a care worker. And I would add that it is the thing that people most often bring up to me when they know I want to talk about different ideas about how we might approach the aging population or how to make things better. It is this beacon of hope on the landscape. Right. And I find the quickest way that I respond to that is it may be a nice place to live, but what is it like to work there?
Care work is already an undervalued, underpaid, invisibilized job. Right now they're supposed to add this extra layer of pretending to be a cashier in order to soothe the people, the residents who are there. It's a nice idea, but we do have to, I think, think about it from that perspective.
One of the things that we note in the article too, is that it seems to be most soothing for families who've moved people in to the village space. It kind of alleviates that nervousness or that guilt about conditions.
So that's a key question, right, is who is this village archetype?
[00:18:50] Speaker D: For now, I don't want this to be misconstrued as some kind of Takedown of the Dementia Village it is certainly a progressive approach to dementia care that allows for a kind of independence and engagement that many people with dementia are unfortunately not afforded. I'm sure the vast majority of people would choose the Dementia Village archetype over a traditional dementia care facility.
But it is fascinating to me to see this idea of concealment of our aging population and the care we provide them come up again and again, even in our most cutting edge care environments.
So I want to shift now to a kind of design that is based less on concealment and separation and more on inclusion, and one which aims to provide an end of life that most people would say they do want.
[00:19:36] Speaker A: We had a call from a client who rang us and said our mom just wanted to die at home.
[00:19:43] Speaker D: Greg and Fiona Walsh are the two parts of the dementia design specialist architects. They consult, educate and provide dementia inclusive design to towns, buildings and families.
[00:19:55] Speaker A: And she had a fall and she ended up in a care home.
And she then ended up wandering within the care home. And because wandering in a care home is called walking in outside society, it's a danger and therefore she was going to be put in a secure dementia unit medicated.
And I just, I really struggled with that.
So we were asked to go over and visit her mom, have a look at the different houses, like her daughter's houses, and is there any way, which is always a little bit late when people get into a care home, can we get her out of the care home back home so that she could have her living wish which is to die at home? And we did that. We did manage to do the design interventions within the house and also got the right care setting put together for her right care support in the home. And she got our wish.
[00:20:50] Speaker D: Greg, a former life Science executive, and Fiona, a practicing architect, explain that among the many design interventions they implemented in this client's home were moving the master bedroom downstairs and converting the upstairs to a space for caregivers. Decluttering and organizing in every part of the home, including the mom's wardrobe, kitchen cupboards, drawers for utensils, countertops and bathrooms to make these spaces feel less overwhelming and more intuitive for someone with dementia.
However, they made sure to keep enough personal items in the house to ensure the space still felt comfortable and recognizably like home.
Greg and Fiona also implemented contrasting colors for towels and other fixtures in the bathroom to make things more identifiable.
They changed the lighting to minimize shadows and dark spots that could cause confusion. And they upgraded the floors to have an even tone and reduce fall Hazards.
But before any of these interventions, Greg and Fiona assessed all possible locations for the mother to live, had the family complete a training session about how dementia develops and connected the family with additional care assistance.
The Dementia Design Specialist was founded in 2017.
In 2018, Greg and Fiona decided to take on a year long fellowship at the Global Brain Health Institute, which Fiona said she was particularly inspired to do after one of her parents had to stay in the hospital following a traumatic brain incident.
[00:22:16] Speaker F: What I realized then was with all my knowledge and expertise, I really didn't have any insight into to designing for somebody with a cognitive or sensory impairment or challenge.
[00:22:25] Speaker D: Greg and Fiona explain that when it comes to dementia inclusive design, instead of focusing on one design element, they take a systematic approach looking at how design can make a space as intuitive and least cognitively stressful as possible.
[00:22:39] Speaker A: Dementia inclusive for us is it's a building that supports your understanding, it's a building that's intuitive and it's a building that doesn't require unnecessary cognitive processing to decipher and understand.
[00:22:58] Speaker F: I suppose from birth we interact with our environment and we build up this capacity of knowledge. And it's a bit like that sixth sense thing when you go into an environment where you can feel uneasy. And I suppose what happens is with dementia, which is progressive, you lose some of that expertise and knowledge and ability to decipher your environment. So we're trying to do is make the environment as accessible as possible, as predictable as possible. So really something simple like if you walk in a door, you can put your hand up and automatically, you know the light switch is going to be at a certain height, a certain distance from the door. So that's kind of ingrained in our memory and it's something we can do intuitively without having to think about it. So it doesn't have to come into our working memory. Even in an unfamiliar space. That's kind of a convention that we're familiar with. Seat heights are kind of a standard conventional height within an inch or two. So if you ever sit down and see height is really low, you're going to automatically, instantly recognize that. We also have what we would call a lifetime established schema. So really simple things like you get up in the morning, you might go into the washroom, you'll brush your teeth, and there's kind of a whole sequence of events you do. So what you really want to do is mirror those lifetime schema within an environment.
So that frees up our working memory capacity. Another thing that we know is that if somebody has a visual access to the ensuite toilet, they're eight times less likely to become incontinent in time because there's that visual access. So if things can be really clear, really visibly accessible, and at the same time working on lifetime established schema and spatial conventions that we're very, very familiar with.
[00:24:34] Speaker D: Another concept central to the Walsh's architectural work is the idea of cognitive load.
[00:24:40] Speaker A: Cognitive load, it's the pressure on the working memory and the executive function. And obviously with a neurodegenerative disease, you will start to lose that capacity over time. If it's exceeded. What happens is you crash and you have a behavioral response. Or we see often people go into hospital for a couple of days and they were coping at home, and then all of a sudden they start to deteriorate. Part of that is to do with an environmental cognitive overload where the working memory and the executive function just can't cope. Your fight or flight response is actually triggered. And then what you start to see over a period of time, unfortunately, is there's a whole pile of cascades that can be triggered, such as cortisol being released into the system, which then further degenerates the hippocampus and other parts of the memory so that it becomes more difficult to interpret and succeed within an environment.
And we've tested and probed and stressed all of this and you see behavioral response within a scheme. When people are in control and they don't have this negative cascade, you're actually running on another cascade which is you're activating the feel good neurochemicals in the brain because you're in control of a space and you're feeling good and therefore you, you're confident.
[00:26:01] Speaker F: I mean, the cognitive load principle is not particular to designing for inclusive design. When we look at air traffic control situations of fighter pilot cockpits, this kind of knowledge and research has been used in those environments to optimize outputs for these people. There's absolutely no reason why this exact same logic can't be used in an environment where people have an impaired cognitive or sensory input coming in.
[00:26:29] Speaker D: Fiona explained that you can feel this idea of cognitive load intuitively just in the unease you feel in being in a space.
And that through seemingly simple design interventions, you can make an environment feel more calming to be in.
[00:26:42] Speaker F: I've witnessed it where we've refurbished a care home and to be perfectly honest, it was one of the worst environments I've ever been in my life. It was quite distressing to be there.
But following a very minimal interventions, we changed from Being an incredibly stressful environment for both residents and staff to an environment which was quite calm and tranquil. It had originally 25 residents on each floor. That meant there were lots and lots of interactions. The first thing we did was we divided it into two halves. It was an L shaped building, so we put 13 in one, what we call the new unit, and 12 in another, so that immediately half the number of interactions somebody had to have in the interface during the day. It also reduced the scale of the environment.
And we then put in lots of what I would call isolated support features. We put in contrast on walls, floors, we put in signage. We simplified the layout in that they were no longer going between kind of a link corridor to get from the dining room to the day room. We kind of put everything so that when you walked out of one, you immediately saw the other.
We made sure that the toilets were accessible. So when you walked out of either day room or the dining room, the toilet was accessible. The bedrooms were reorientated so that the resident had a view to the toilet from the bed, so meant shifting the bed location. The washrooms were all level access. We introduced colored towels, contrasting towels, contrasting soap on the sink. And it was small little interventions like that that suddenly would trigger memories and trigger responses. And all of these things just became intuitively done. Rather than having to be supported to do absolutely every activity of daily living, people could independently take on those functions again themselves.
[00:28:23] Speaker D: In addition to experts in the field, Greg and Fiona also work with the Irish Dementia Working Group, an advocacy group by and for people living with dementia. They share their real life experiences living with dementia and provide input into design schemes. Fiona and Greg really drove home to me that while dementia can be a stressful and overwhelming condition, there are changes we can make to ease those feelings, both in our care facilities as well as our homes and public spaces.
Things like open layouts that allow for clear visibility of different rooms, common features of the home located in intuitive, accessible locations, and the use of contrasting colors can assist a person with dementia to navigate a space with as little stress as possible.
And as the architectural experts expressed to me earlier on in this episode, how we design a space says so much more than the way it looks. It says who we think should occupy that space.
So by making our world more navigable for people with different cognitive abilities, we're also embracing those people as a part of our world and stripping away the stigma associated with their condition.
Here's Shannon Maddern again, I would like
[00:29:31] Speaker G: to think that rather than separating out, what if we created a Society instead, that acknowledged difference made space for it, that allowed for kind of multigenerational housing. They created spaces that are safe not only to folks who have mobility issues or get lost, because these are challenges that people face both at the beginning and the end of life.
So this is an argument that a lot of folks who were advocating for universal design, for critical accessibility, recognizing that when you create a space that is accessible for those with disabilities, you create a space that is more accessible for everybody.
[00:30:06] Speaker F: I think the key thing is that our relationship with our environment is not passive. And if we design inclusive environments, we can support people to live healthier, more independent and autonomous lives for longer. And I think that's the key. And all of us want to age in place in our own community.
Wouldn't that be the dream if we could actually ingrain this in all design so that going forward your generation, it's probably a bit too late for me, but that my children's generations could age in place in an environment designed to support their well being and mental health? I think that would be one of the things I would like to see. If it could be a legacy, that would be it.
[00:30:53] Speaker C: Welcome back to the Age of Aging. I'm Jason Carlewish and I'm here with Jake Johnson. Jake, that was amazing reporting. Thank you. You nailed it. I started this episode out with Terry and I asked Terry about his experiences in a nursing home, particularly a nursing home designed for persons with dementia. And I told him the story about what I call the miracle kitchen, which was a space that transformed the lives, the well being of persons living with dementia.
So let me ask you actually, what's your experience of a nursing home?
[00:31:20] Speaker D: I don't have a lot of experience though. My grandmother, at the end of her life, she lived in a nursing home very close to my aunt and uncle. She lived there for about a year.
[00:31:31] Speaker C: And a lot like the one Terry's similar.
[00:31:33] Speaker D: Yeah, she did have her own room, which. That was nice. It was kind of like a studio apartment version of her house that I had gone to as a kid.
[00:31:42] Speaker C: That central eating area.
[00:31:44] Speaker D: Exactly. Had long corridors, a lot of nursing staff running around.
[00:31:48] Speaker C: Not exactly a place that if you were like looking for a home with your partner, you'd say, hey, let's move in here. Yes.
[00:31:55] Speaker D: And she was very resistant to moving in there for a very long time. She wanted to stay even during COVID
[00:32:01] Speaker C: which I think many are, because many have the same experience. I had the same experience you did when I was a kid, same thing. And this is now circa 1978, same thing. How little has changed. And you went out and talked to these experts. So let's tie this together. Let's tie what you learned about these from these experts in design and architecture as you reflect upon your own experiences. Seeing, for example, interesting Army Grimmer. That was in the story. I told Terry's story, just in general. So what do you think we should be doing about how we design spaces for older adults, particularly older adults whose brains, whose minds are damaged by a disease like Alzheimer's disease? What do you think?
[00:32:35] Speaker D: Yeah, well, something that was so interesting to me was the experts in the episode really hit home for me, how much design is a part of our lives, the. Of how much our environment is integrated into our lives at all times. So when that environment is chaotic or confusing, you know, unhome like, or unhomelike, that exacerbates a lot of the things that, you know, is going on in a person with dementia's brain.
And that can happen even before we get to the nursing home or the dementia care facility. You know, things like light switches, being in a place that we always think that a light switch is going to be, chairs, being at a certain level, open spaces, view of a bathroom or of a kitchen.
All of these kind of design elements can actually help a person with dementia feel more in control of their lives.
[00:33:24] Speaker C: Because I think what's going on is, you know, if you think about it, you know, I could. You and I right now could move to a completely different space. We might not like it, but we probably pretty quickly figure it out. But for many persons living with advanced dementia, moving into an unfamiliar space, like, I've never seen a home designed like this is a doubly coggedly challenging issue. It's not just moving into another home, like, setting where you're like, oh, yeah, okay, there is where the light switches are, because they're always by the door. But instead it's like, oh, my gosh, the light switches are in this new, odd place. And so to the kitchen. Where is the kitchen? There is no kitchen. You know, we could just run the list of sort of like, just surreal experiences.
[00:34:00] Speaker A: Yeah.
[00:34:02] Speaker C: The other thing that's interesting, of course, is that you can't. You can go to a space. And I do this, like, when I travel to hotels, I move the furniture around. You know, I can't stand that they have the desk in front of a mirror, you know, so I sit at the desk to do work in the morning. And I'm looking at, like I said, good to see you again. You know, and so if I can move the desk, I move the desk. If I can move the mirror, I move the mirror. And if I can't move the mirror or the desk, I hang a towel over the mirror.
[00:34:22] Speaker A: Yeah.
[00:34:23] Speaker C: Because I don't want to stare at myself while I'm working.
Who does that? But imagine if I had dementia and I'm put in front of this like, oh, Carlos, he wants a desk because he used to be a writer. So let's give him that desk. I exaggerate of, you know.
[00:34:36] Speaker F: Yeah, yeah.
[00:34:36] Speaker C: But it's about. We're able to make choices about the spaces we live in. We can redesign them, we can change the furniture to suit our minds. But people with dementia can't do that. We have to decide for them.
[00:34:48] Speaker B: Yeah.
[00:34:48] Speaker D: And you have to get into the mind of somebody with dementia, which is. It's impossible. But you really have to think about what is their perspective on this space. Because a lot of people with dementia can't advocate for themselves in the same way.
[00:35:00] Speaker B: Exactly.
[00:35:01] Speaker C: They're not going to hire a decorator.
[00:35:02] Speaker D: Exactly. Yeah, yeah.
[00:35:04] Speaker C: And have a one on one about how they want a space to work for them. Right.
[00:35:07] Speaker D: So we have all of these ideas. Like I talk about the dementia village in this episode, critique it a bit. I think that it's an interesting concept that is actually, apparently the first one in the US is being opened soon in Wisconsin, which. But you know, it does allow for a certain kind of movement throughout and people have a lot of freedom. But it's also kind of based on what we think people with dementia would like.
[00:35:34] Speaker C: I mean, what bugs me about some of those villages, especially the nostalgia villages, is this idea that they'll, quote, be more comfortable if all of a sudden we take them back to when they were 30 years of age. And you know, I don't doubt that for some that works. I don't doubt it. But is that the only way it works? Because I think one of the things you pointed out in your narrative was there's something really odd about of working at a place like that. And you referenced the German show. Well, everybody knows that this is not what is true, and yet we have to pretend that it is true or at least just suspend that idea. And look, when people are really ill from an illness, whatever it may be, there are sometimes extreme measures needed to palliate symptoms and manage it. But I just think this idea that the norm for designing a space for persons with dementia is we've got to take it back to 1950 or 1960 or 1970, as people age, by the way, because. Because not everyone's gonna remember that Eisenhower was president because I wasn't born when Eisenhower was president. I'm gonna need, like, Jimmy Carter for my nostalgia moment. Anyway, what's my point? I think better though is this idea of what's the homelike feeling independent of the need to have these nostalgia photos and whatnot and deception. And what I do like about some of those villages you were talking about are where they emphasize the feeling of home. Okay. Carloa, she generally decorated his place and kind of ne neoclassical. So let's kind of keep a neoclassical look, you know.
[00:36:51] Speaker A: Yeah.
[00:36:51] Speaker C: And I think that's kind of what we want to be thinking about is the aesthetics of design, not the nostalgia of design.
[00:36:56] Speaker D: Right. Yeah. No, and it is so much about, you know, the individual and what they're actually makes them feel at home instead of maybe an archetypal idea of what an older person would like, you know, a village from the 1950s that may or may not have actually existed in the way that we're imagining it.
[00:37:16] Speaker C: So let's wrap up. What do you think the future for design should be for an aging America where we're learning how to live well with an aging brand? What's your sort of we need to start doing boom.
[00:37:25] Speaker D: Well, as we've said at this point countless times on the podcast, our older adult population is growing. So not only are we going to need more design that accommodates conditions like dementia, but I think a big step would be listening to people with dementia more about their needs and what spaces feel comfortable and safe to them.
And that's going to take further destigmatizing of dementia. So it's kind of a cyclical thing where, as I said before, design can destigmatize and then that can lead to more inclusive design. I think in terms of actual design implementations, I love the ones that Fiona Walsh talks about in this episode, like open floor plans, appliances and furniture and intuitive places and at standard heights, easy view of the bathroom and contrasting colors to help people with dementia navigate the space.
If people are interested in making their home more dementia inclusive, the Alzheimer's foundation of America actually created a video that's on their website where they walk you through different design elements of a dementia friendly apartment. So if people are interested in that, we will link it in the show notes below.
[00:38:30] Speaker C: Awesome takeaways. I think the key here is that the ways we design a space, the choices we make, influence our minds. All of our minds, all of us, the well and the unwell but have a particular impact upon the minds of persons living with dementia, and we have to be more intentional and thoughtful about it. And those are great, concrete suggestions. Nice work.
[00:38:48] Speaker D: Thank you.
[00:38:52] Speaker B: Hey, it's Terrence Again, thanks for listening to this episode of the Age of Aging. This show is made possible by generous support from the Michael Nadoff Communications Hub Hubfund, and our sponsors, the TIAA Institute and Rothkoff Law Group. The Age of Aging is a PEN Memory center production hosted by myself and my producer and co host, Jake Johnson.
Contributors include Dahlia EL Said, Jason Karlewish, Emily Largent, and Allison Lynn. A special thanks to our episode sponsor, the TIA Institute, our co hosts Jason Karlewish and Jake Johnson, and our guests Shannon Mattern, Anne Marie Adams, Sally Chivers, Fiona Kenney, Greg Walsh and Fiona Walsh.
If you enjoyed this episode, please consider subscribing to the podcast, leaving us a review or giving us a like. These types of things really help others find the show, and if you know someone who might be interested in these conversations, share this episode with them. We also love hearing from our listeners. If you'd like to reach out, our contact information is in the show.
[00:39:51] Speaker D: Notes Sat.
