99% Invisible - 557- Model Village

Episode Date: October 24, 2023

For decades, society has dealt with people with dementia and other forms of cognitive decline by storing them away in unstimulating, medicalized environments. But around the world, a new architectural... movement is starting to challenge that old paradigm. Designing environments where people with dementia can live as normally as possible, until the very end.Model Village 

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Starting point is 00:00:00 This is 99% invisible. I'm Roman Mars. Denise Mazzo spent most of her adult life in a two bedroom apartment in Grenoble France. She raised two kids there while working at a factory and then a daycare. It's where she sowed Halloween costumes and dress suits for her family and settled in to her retirement. But old age has been difficult for her. In 2013, Denise, my grandmother, was diagnosed with Alzheimer's disease. That's reporter Mary Ann Renault.
Starting point is 00:00:32 As the disease stripped away her memory and cognition, it also strengthened the world around her. She stopped driving, so we sold her car. And after decades of feeding her family, she stopped cooking. And her kitchen became another room to wander through. Once it wasn't safe or healthy for her to spend her days alone and disoriented, we moved my mean knees to a specialized memory care unit in a nursing home near Grenoble. Where she lives now is more like a hospital than like a home.
Starting point is 00:01:01 The doors are locked by keypads. The overhead lights are fluorescent. There's no living room, just a central space, with a row of scratched up tables and an area with medical arm chairs lined up in front of a TV. Her only private space is a small bedroom located in one corner of the ward, which she can't leave by herself. She tells us she's not home, but somewhere else. This is what most dementia care looks like in the Western world. For decades, society
Starting point is 00:01:30 has dealt with people with dementia and other forms of cognitive decline by storing them away in un-stimulating, medicalized environments. But around the world, a new architectural movement is starting to change that old paradigm. Designing environments where people with dementia can live as normally as possible until the very end. Dementia has never been a welcome part of old age, but it wasn't always as despised or as feared as it is today. A couple of centuries ago, it was seen as a natural part of getting older. Like I say, it's not a good thing.
Starting point is 00:02:08 No one's happy to start to have difficulty with memory and things like that. But there is a sense that it can be dealt with stoically kind of like all the things that happen with old age. That's Jess Ballinger, a historian of Alzheimer's in the United States. He says, at the turn of the 20th century, new devices like the microscope and the X-ray revolutionized Western medicine.
Starting point is 00:02:30 Now doctors could see previously hidden elements of the human body. By mid-century, this led to amazing leaps in treating and curing diseases like TB and polio. But there wasn't much progress when it came to dementia and Alzheimer's disease, the most common type of dementia. Well into the 20th century, doctors still had no way to diagnose Alzheimer's, let alone treat it. As one doctor put it in a 1980 news interview, he could listen to a patient's chest and hear congestion or see pneumonia on an x-ray.
Starting point is 00:03:02 And it's a very cut and dried situation where I can take your blood pressure and say, gosh, you've got high blood pressure, you've got hypertension. And these are very quantifiable and very defiantable. Alzheimer's disease is such as really only established at autopsy. After the fact, after the patient has expired. So instead of getting care,
Starting point is 00:03:21 people with dementia were simply locked away from broader society. For centuries, dementia patients had been sent to poor houses and jails. So instead of getting care, people with dementia were simply locked away from broader society. For centuries, dementia patients had been sent to poor houses and jails. But in the 19th century, many were moved to public mental hospitals. These institutions were designed to contain people, not care for them. Residents lived in crowded, sometimes unsanitary conditions, with limited access to fresh air and loved ones.
Starting point is 00:03:45 When public mental hospitals were forced to close, a wave of nursing homes ushered in a new generation of people with dementia with nowhere else to go. Many of these nursing homes echoed the clinical harshness of their predecessors. Staff resorted to physical restraints, anti-psychotics, and sedatives to deal with patients, and residents could go months or years without stepping outside. All the while, Alzheimer's gained a reputation as an ever-approaching wave of human devastation.
Starting point is 00:04:13 Well, most of us have never heard of it, but it kills 100,000 Americans every year. It strikes the elderly up to 2 million of them. It's called Alzheimer's disease. And with life expectancy increasing, it could become the worst health problem of the next century. Journalists, politicians, and even advocates and loved ones regularly described people with Alzheimer's as vegetables, as strangers, as shadows, as better off dead. Even sympathetic
Starting point is 00:04:42 news reports presented the disease as it is often described, the funeral that never ends. I don't know why, and I don't know how, and I never dreamed that I would be in a condition like this never, never. But how do you feel it? That I'd rather be dead. As the terror of Alzheimer's spread, federal funding for Alzheimer's research also surged.
Starting point is 00:05:14 In the United States, it went from 4 million in the mid-1970s to 400 million by the year 2000. This explosion was driven by a fear-stoking publicity campaign. You have to show that people are suffering in order to get Congress to support research. And it works, works beautifully. That money was almost exclusively invested in finding a cure or treatment for Alzheimer's,
Starting point is 00:05:41 a strategy that hasn't panned out yet. And while it would be great to find a cure, very few resources have been used to study the lived experiences of people with a disease or to improve the spaces they inhabit. In fact, experts thought of nursing homes as a halfway technology, like the iron lung before the polio vaccine. Here's Jess Ballinger. There's a way in which no one intended this in the Alzheimer's movement, but in portraying the absolute devastating nature of this disorder, in making the claim that biomedical research was going to be the answer, there's a way in which
Starting point is 00:06:20 they make caregiving like an afterthought. In all of this discourse, care becomes second-class. It becomes the thing you do because we've failed to have something really effective. As a result, many people would dementia live in spaces that are not designed with their specific needs in mind. For example, part of dementia's progression involves the loss of visual spatial skills. Studies have shown dementia patients might perceive a flat screen television as a hole in the wall or a paisley patterned rug as a fish pond in the ground.
Starting point is 00:06:58 They can interpret their own reflections in windows and mirrors as entirely other people. As I've seen at my grandma's nursing home, they can spend hours trying to clean what seems like a dirty tabletop that is actually just a speckled pattern. Throughout the West, most dementia care is like this. It's impersonal, clinical, and disorienting. But I kept hearing about this one place that's considered the exception to the rule. A living space whose anchoring philosophy is dementia-friendly design.
Starting point is 00:07:29 It's called the Hogoike, and it's near Amsterdam in the Netherlands. Before the Hogoike existed, in its place there was a regular nursing home called the Hogoike. When the Hogoike opened in the 1970s, it wasn't yet the model for dementia-friendly design. It was six floors high, with corridors locked by keypants, handrails flanked the white walls, staff dressed in scrubs, medical needs, trumped, human ones. Ivan Van Umarangen worked on the Hogo-I staff. She told CNN that one moment in particular radically shifted her perspective on dementia care. It was 1993, and Yvonne's mother called to give her bad news.
Starting point is 00:08:09 Her father had died suddenly of a heart attack. One of the first things I thought was, thank God he never got to be in a nursing home. That's crazy, and I have to think that. I'm in the management of a nursing home, and I don't want my father to come there. That's crazy. It turned out her colleagues felt the same way.
Starting point is 00:08:30 They wanted their loved ones to receive the medical care they needed when they got older, but more importantly, they wanted them to lead normal lives, or at least as close to normal as possible. The Hogoai team agreed this couldn't happen in a non-descript hospital environment like the one they were running. With the envision was an approach that optimized environments for people with dementia instead of imposing sterile non-specific design, something that prioritizes the needs of dementia patients above all else. Remember those trippy patterned drugs? One principle of dementia-friendly design
Starting point is 00:09:05 is to minimize visual confusion with lots of natural lighting and uniform countertops and flooring. This school of architecture is still pretty niche, but it has a grand vision of a built and social environment that can support even sooth patients with dementia. When the Hogo-I began its redesign,
Starting point is 00:09:23 it turned to a Dutch architect named Frank Vandillen. At that point, where we came from, it was a complete radical, new way of designing a nursing home. We start with questioning what is a lifestyle approach, what is a recognizable environment for people with Alzheimer. What is a safe built environment? How can we keep in touch with daily lives pleasures? Frank was hired by the Hogowak for their big redesign. At first, the team focused on small, affordable renovations to their existing buildings.
Starting point is 00:09:58 They swapped out medical furniture for second-hand stuff and cheerfully decorated the living spaces. They installed a system of doorbells for private rooms and for Bade's staff from entering until after they'd run the bell. And they shrunk the wards from 30 years so people down to groups of 10 or 11 neighbors. Then in 2005, the Hogo White took a big leap forward. They tore down part of the original building and imagined something new in its place.
Starting point is 00:10:24 A campus of buildings and spaces made specifically for people with dementia. In 2008, the new Hokoike opened. Instead of one big facility, it was a village, a neighborhood of homes, stores, cafes, streets, alleys, and parks. Everyone living there has advanced dementia, which means they can no longer live at home alone, and they're meant to live at the Hogoike until they die. But the Hogoike does not look or feel like a place of sickness and death. Feels normal, and that's what's so unusual about it.
Starting point is 00:10:59 I had heard about the Hogoike in my previous reporting on dementia care, and I've spent a lot of time watching my grandma's transition from her long time home to a new, unfamiliar holding space. I thought the Hogue-Wike sounded revolutionary. So this summer, I got a chance to see how it works in practice, in the messy, chaotic reality of dementia. I got to Hogoike on a bright windy June morning, and my guide that day was Eloy Venhal, one of the Hogoikes co-founders. The residents already said, in the sun, I see already a resident reading the news paper, or somebody reading the newspaper, because I'm not sure if it's a resident. We started our tour in the village's main courtyard.
Starting point is 00:11:44 The waters of a large central fountain were gurgling and birds were chirping. On the benches and chairs scattered all around, early risers were already taking in the sun. Here, a Hoko-Wike residence benefit from a unique architectural concept, rings of privacy. In public places like the courtyard, they're in the outermost ring, totally
Starting point is 00:12:06 exposure. Just by sitting down, they can encounter dozens of passing strangers and friends. That's where we found Niko, a 79-year-old Hogo-wike resident. Good morning. And then she went to the list. So I brought a journalist today. What? A journalist. We stopped to say hello and chatted for half an hour. Nico told me his hometown is base, where the Hogo Ike is located. It's quite sad. Yeah. He was a maintenance worker for Philips for 40 years.
Starting point is 00:12:39 He collects coins. We're going to show him how long he saves a bucket. OK, and he is awake at 6.30 in the morning. His son lives in the nearby neighborhood and visits often with Nico's grandchildren. Recently, he told me he ran into an old high school classmate who was there to visit another resident. When Iloy tells him I'm there doing a story about the Hogue-Wike,
Starting point is 00:12:59 Nico lit up. He said, are you making a podcast about his good life here? How much? You can be convinced, that's you. lit up. With his warmth and his open smile, Nico reminded me of my grandma. The fact that Nico was here means he was probably also around the same stage of dementia as she was. But at my grandma's nursing home, she and other residents are often dressed in nightgowns by 6 p.m., and they wear embarrassing bibs for group meals. Here was Nico, with his shiny watch, dark jeans, neat sweater and black collared shirt.
Starting point is 00:13:38 He seemed to be living out a different version of the same disease. One were his dignity and his appearance were left intact. The biggest design innovation at the Hogoike isn't the carpeting or the lighting fixtures or any advanced medical technology. It's how the Hogoike's design protects autonomy and allows people to live the same way they did before the advanced stages of dementia. the same way they did before the advanced stages of dementia. Every day, for example, someone from each of the 27 homes comes to the Hogo Yikes supermarket to collect groceries for the daily household meal, which is decided on by the residents. But unlike most grocery stores, there are no price tags and no money is exchanged at checkout.
Starting point is 00:14:22 The Hogo Yikes has conveniently edited out these complicated transactions, so residents can still enjoy grocery runs without worrying about calculating budgets or carrying change. Walking around, I noticed some residents smoking cigarettes outside of their homes. That seemed, well, weird to me, for a nursing home. But letting people smoke is part of the social
Starting point is 00:14:44 and physical architecture, Eloise says. Residents use their furnished terraces however they like. In the same vein, if they want to wash their own clothes or make their own breakfast, each house has a washing machine, dryer, and functional kitchen at their disposal. Of course, the Hogo-I residents still need careful attention and clinical care. So at any given time, between one and three care workers with medical training watch over
Starting point is 00:15:08 each household, helping to lead meal preparation or washing up. They will support you in your daily rhythm, so they will not wake you up. They will follow your rhythm. You can choose what you want to eat at breakfast. You make your own breakfast. They will make sure that what you're still able to do, they will support you with that. And they will only take over if you cannot do it anyway.
Starting point is 00:15:34 Walking around, it's impossible to tell by the clothes who's a visitor or who's a medical professional or a trained volunteer. Everyone is dressed in street clothes, no scrubs, no hospital counts. The staff are trained not to think of themselves as authority figures who correct behavior and treat symptoms, but to accept residents as they are and work to ensure their happiness. As Eloise showed me around, we passed by a
Starting point is 00:15:58 terrace. The door was wide open and the staff member welcomed us into the house. And so, it was over three attempts. Come in! Thank you. Thank you. And we entered the living room and Eloi explained who I was and what I was doing there. Music was playing from a radio and one resident, Tricks, wandered over, singing along. I had to come to the beach. Yeah. I'm going to be a little bit more careful. Yeah.
Starting point is 00:16:28 No, I'm going to be a little bit more careful. Tricks joined in the conversation, dipping in and out of song to complain about the strong winds outside. I'm going to be a little bit more careful. I'm going to be a little bit more careful. La la la la la la la la la la la la. The staff member told us Tricks is a lover of music, especially classical music and songs from Amsterdam.
Starting point is 00:16:49 It was one of those moments I loved to encounter with my grandma, a total suspension of social norms, and the joy that awaits us when we simply embrace the person in front of us. There was no shushing, no ignoring. The staff member understood Tricks' singing as part of who Tricks is, how she expressed herself, her needs, wants, pleasures, and displeasures, as she told Eloy, as long as there's a good atmosphere, Tricks enjoys herself. All together, people living at the Hogo Lake do something that is pretty unusual for people with dementia.
Starting point is 00:17:27 They do what people do anywhere. They share meals, they make friends, they have pets, they fall in love, and they develop hobbies. So many hobbies. Near the main plaza, a billboard announces the weak's group activities, like music clubs, gardening, painting, sewing, biking, flower arranging, and happy hours. These activities offer another ring of privacy, this time of semi-privacy. Smaller groups are more structured and offer the possibility of making close friends
Starting point is 00:17:58 with the same interests. Finally, we reached the innermost ring of privacy. The house is. We ran into Nico again outside his, admiring the family photos he had set out on his windowsill. He asks if we can look in his room because he invites us. Nico's been placed in this house alongside six other residents with similar traditional interests, like local news, folk music, and homey Dutch meals. I have over there. No, you're home.
Starting point is 00:18:28 I'll post it in the evening. We followed Nico to his bedroom, the most Nico space in town. And it was his unequivocally. Nico had decorated it with pictures of windmills and photos of his family and famous Dutch soccer players. That's even my father-in-law. Yeah, that's the mother. And that is the mother-in-law's men's sons. Nico was proud to show us his space and his belongings.
Starting point is 00:18:57 Many of them were gifts, like the model airplane given to him by a former Hogo-like resident and friend. Iloi pointed out, people seemed to enjoy giving him gifts. And Nico was humble, almost resistant to the idea that he could be so well liked. Well, that they are. But I have to... I have to. Yeah, you're a good guy.
Starting point is 00:19:17 I'm just getting a ride. I'm a good guy. I'm not a bad guy. No, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no,ers. Nee, nee, nee, mensen vinden je aan, daar gaan geefsleden. Ja, denk ik. En ik voel dat al ook. of the most frequent questions from visitors. He tells them what he told me. The Hogue Wike is mainly funded by the Dutch government and receives the same budget per resident as any other skilled nursing home offering this kind of dementia care in the Netherlands. They just spend that money very differently. Some of those choices come down to the basics, like plumbing. Instead of building private bathrooms in every suite, like you'd find in a typical nursing home,
Starting point is 00:20:04 the Hogue Wike opted instead for two household bathrooms, similar to what you'd find in a lot of family homes. The designers also opted out of certain traditional nursing home features. Frank Fondillin, one of the Hogoike's architects, says they intentionally spread out social hubs to organically encourage physical activity instead of building a dedicated physiotherapy room. We designed an environment where people are more or less forced to go out to the supermarkets or to their hobby clubs or to the theatre. So they get their movement not because there is a physiotherapist in the house, but they get the movement to stay flexible because of the design and because of the urban design of the dementia village.
Starting point is 00:20:53 And at that point, we could skip, let's say, 200 square meters of physiotherapist room. And with that money, we can do something else. Another big question from visitors is about danger. The Hogo X design embraces everyday risk. A Hogo X resident could fall while roaming the neighborhood or they could jump in the fountain or they could cut themselves making a sandwich.
Starting point is 00:21:20 But according to Eloi, that kind of thing doesn't happen here, more than it does anywhere else. I think something really went wrong where we, as a society, accept that locking in people is better and safer, and that safety is a ball of life. That's our problem. That's our problem, our fear of more healthy people. But in our lives, all kinds of things also happen. You are here in Amsterdam. It's dangerous to walk around with all those bikes, trams, cars. We are tourists. It's a very dangerous city, but you still decide to come. Eloy pointed to one way the Hogoike measures the value of all the autonomy and socializing
Starting point is 00:22:10 it encourages. In the Netherlands, one in four nursing home residents with dementia is on anti-psychotics. At the Hogoike, that number is just one in ten. Experts predict the number of people living with dementia will more than double by the year 2050. With this in mind, a lot of people in charge of dementia care are looking to places like the Hogue Wike as a model for how to do things differently and to treat a person's social environment as an equally important part of their health care.
Starting point is 00:22:43 There are now dozens of dementia villages and senior microtowns popping up in countries like Sweden, New Zealand, Canada, Denmark, and Australia. There are no dementia villages open yet in the US, though one is set to open in New Jersey in the next three years. But there's not a lot of hope that the village model will take off in a big way under a privatized health care system. Meanwhile, the Hogoike itself continues to evolve. Eloise says he hopes new regulations could allow to take another radical step forward, by
Starting point is 00:23:13 opening the only doors in the village that, with few exceptions, remain locked to residents. The entrance. That would mean letting residents come and go freely. Even people who like Eloise methods have questions about that one. Others say, Eloise, you're completely insane because they have advanced a mentor. They should be behind a locked door for their own safety. But I'm convinced about it. My measures that we should open the door.
Starting point is 00:23:40 The someday open door is what I thought about as I left the hogwike. Despite everything I'd seen in an experience, my mind still wandered to the worst-case scenarios. I guess phones or location devices could help keep residents from getting totally lost. But what if they had a stroke or a heart attack? What if they ran into someone unfriendly or even violent? Don't we owe the most vulnerable among us some protection from danger? And then I thought of my own family and my mommy Denise's husband, Papillon Jérô.
Starting point is 00:24:13 He was diagnosed with Alzheimer's in 2008. He had survived internment during World War II and a life of poverty and manual labor. I remember as a child not knowing much about him other than what had happened to him, but I knew he loved to walk every day. Even when my mummy and puppy came to visit us and Rochester, Minnesota, he could not be kept from his walks. He spoke no English, he had Alzheimer's, at no point in his walk when he knew where he was, but we decided to put life above safety.
Starting point is 00:24:46 We put a hat on his head. We wrote down our contact information on a piece of paper and tucked it into his shirt pocket where it would stay unnoticed. And off he went, he walked for hours, to who knows where, without a map, alone in his mind, in a foreign place, he visited once a year. He walked, and he always came home. More with Marianne Renault after this. So we're back with reporter Marianne Renault. Hey Marianne.
Starting point is 00:25:36 Hi Roland. So one thing that struck me during this story is the history of the perception of dementia. Like it wasn't something that we feared as much in the past, which I found very surprising. Could you explain this a little bit more? I found that surprising as well when I learned that. Really, as we talked about in the piece, there was a time when dementia was conceptualized as inevitable. So it wasn't a disease, it was what we would call quote unquote, senility. And the thinking was, for example, that the mind is just the first part of the body that deteriorates with age, or that you're born with a certain cognitive reserve.
Starting point is 00:26:16 And it just runs out. Like it was way more just a fact of a late symptom of being born. Late symptom of being born is an interesting way of being born. It's an interesting way to put it. So then what changed? One really big change comes along with a man named Dr. Robert Butler. And he is a part of the reason why we fear Alzheimer's so much now. Butler starts his career as a research psychiatrist. And over the evolution of his career, the goal is really to push back
Starting point is 00:26:46 against stereotypes about the elderly and to make aging something that can be positive and dignified. So he coined the term ageism in 1968. He's the guy who came up with that concept and that word. And he won a Pulitzer Prize for his book, Why Survive Being Old in America in 1975? Well, he's really putting a fine point on it there, isn't he? Yeah, that's amazing. And the year he wins the Pulitzer, actually, he's also appointed to be the first director of the brand new National Institute on Aging,
Starting point is 00:27:19 which was controversial at its conception because a lot of officials thought that it would just duplicate research on aging on strokes on heart disease that was already being conducted at these other existing NIH agencies. So Butler in his role as the first director, he wants to prove NIH's worth and he looks around and he sees the success of strident activism in the recent civil rights movement and in the women's liberation movement. And he also sees how the war on cancer strategy had an enormous impact for getting funding for the cancer institute. So he thought to himself, I need
Starting point is 00:27:57 a disease. So you have Butler, he wants to make Alzheimer's the cancer of the NIA. make Alzheimer's the cancer of the NIA. That is, of course, just a challenger. And he says Butler's message to the public was this. We hadn't solved Alzheimer's because we hadn't adequately invested in a scientific solution to it. And he used to talk about this in interviews all the time. Alzheimer's disease, painful, devastating disease, it accounts for half of the people in nursing homes.
Starting point is 00:28:25 If we made a major commitment of research, we could bring that to an end. This is so interesting because, instead of aging being a natural process, the new thinking is that aging is a collection of accumulated diseases that can be solved in a laboratory, which is totally new thinking at this point. So what is the result of Robert Butler's campaign in this regard? Well, strictly speaking, in terms of numbers funding for Alzheimer's research absolutely boomed.
Starting point is 00:28:58 And then, of course, on the other hand, it's reputation also boomed, but it was this terrible reputation as what we call it a dread disease. At least in the US, Alzheimer's disease went from being a sort of niche, relatively unknown neurological condition to being a household name, something that people really thought of and felt as the disease of the century. And that campaign for awareness awareness largely disseminated stories of loss and grief, you know, really tragic stories. We all know that story because it's been told so many times through the media, but it's
Starting point is 00:29:36 the story of someone in the prime of life who's cut down by this terrible disease. Like that is part of what the meaning of Alzheimer's has a dread disease that we must combat. We must fight in the same way we have a war on cancer. I mean, I am so steeped in this thinking. I was grew up through all of this time where Alzheimer's became a thing you heard about and then became a thing you dread. I can't even think of that as being a problem. You know what I mean? So like tell me why is it a problem
Starting point is 00:30:07 that he raised awareness and made people fear this? I think for me, the problem really is what that thinking allows us to then do. So I don't think it's wrong and I don't think it's bad to be afraid of a disease that does something as extreme as changes your cognition, right? Like changes how you experience the world and how you understand the world and your relationships with people. I think that very clearly this is a disease that leads to certain kinds of losses and I think what feels
Starting point is 00:30:43 challenging about this idea that people need to understand so deeply just how serious it is, just how devastating it is, is that that has a real impact on how we think of people with that disease. And it means that in sort of the public conception, we think of someone with dementia as someone with less and less value. We think of them as someone who can participate so much less in the world. And it's more so that I think if there was a way
Starting point is 00:31:19 for us to understand both the losses, but then also so much of the love and compassion that can come along with it too, but it's just that by really, really focusing on the losses, but then also so much of the love and compassion that can come along with it too, but it's just that by really, really focusing on the negative, it's allowed us to treat these people differently than we might otherwise. I mean, we can think about a disease like cancer, and what would it mean if we lived in a world where we thought that as soon as you had cancer, or as soon as you were sort of in a severe stage of cancer that you no longer had a self, you no longer had an innately human quality about it.
Starting point is 00:31:50 It's almost impossible to imagine that, but I do think that's really what we've done for people with dementia and Alzheimer's. We are still living with that stigma today, and I think that part of what makes that stigma so powerful is we don't verbalize exactly what it is that we think about people with dementia. But if you want to summarize that stigma kind of crudely, it is if you can't think, then can you be? I don't think that most people believe that people with dementia are capable of comprehensible expression. I don't think we think of them as being capable of having a meaningful sense of self. I don't think that we treat them as deserving of the kind of dignities, freedoms, and comforts
Starting point is 00:32:31 that we feel that every human has the right to. Your whole story is about these villages, which represents a kind of progress in dementia care. Are there any other things that give you hope about how we treat people with the disease? I mean a lot of what I've seen and learned through my reporting is how much basic human communication can be part of the solution. And what can get tricky is sometimes that is not basic social convention. So we can think about tricks for example in the story who was singing and who communicates through singing and is also present in conversation through singing. And that was a moment where just by paying attention and knowing her, there was communication happening.
Starting point is 00:33:16 But it required us to sort of halt our beliefs on how a group of adults is supposed to have a conversation together or what that looks like. So a lot of it is stuff like physical touch and having conversations with people with dementia that they can actually participate in, not just asking, do you remember this? Do you remember that? The dermatologist and basting talks about open-ended questions.
Starting point is 00:33:43 Can you show me this? There's these ways of looking to the essential of how human communication works, and we don't actually require hyper cognition to understand each other and to value each other, and I really think that we live in a world and in a future where there is so much uncertainty and disorientation and vulnerability and resilience, and people with dementia are experts on all those subjects.
Starting point is 00:34:15 I think that we have so much to learn and it just requires us taking a step back and thinking more simply about human relationships. Well, thank you, Mary Ann. It's been a really interesting work on the story with you. And so thanks for bringing it to us. I appreciate it. Thank you so much for letting me tell it with you guys. Thank you. Thank you.
Starting point is 00:34:34 Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you.
Starting point is 00:34:42 Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. 99% Invisible Was Produced To Speak By Marianne Renault, edited by Chris Barube, sound mixed by Martin Gonzales, music by Swan Rihale, fact checking by Graham Haysha. Our Executive Producer is Kathy too. Delaney Hall is our Senior Editor Kurt Colstead is our digital director. The rest of the team includes Emmett Fitzgerald, Christopher Johnson, Vivian Leigh, Jason Dillion, Lashemondon, Jacob Moltenado Medina, Kelly Prime, Joe Rosenberg, and me Roman Mars.
Starting point is 00:35:08 The 99% of visible logo was created by Stefan Lawrence, special thanks this week to Lotta Van Holland, Morton Greggerson, Johannes Peterson, and the entire team at the Hocoike. 99% of visible is part of the Citrus and Sirius XM podcast family, now headquartered six blocks north in the Pandora building. And beautiful. Uptown, Oakland, California. You can find links to other Citroën shows I love as well as every past episode of 99PI at 99PI.org. you

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