Roman Mars [00:00:01 Apple Card is the credit card created by Apple. You earn 3% daily cash back up front when you use it to buy a new iPhone 15, AirPods, or any products at Apple. And you can automatically grow your daily cash at 4.15% annual percentage yield when you open a High Yield Savings Account. Apply for Apple Card in the Wallet App on iPhone. Apple Cards subject to credit approval. Savings is available to Apple Card owners. Subject to eligibility. Savings Accounts by Goldman Sachs Bank USA. Member FDIC. Terms Apply. New immune supporting Emergen-C Crystals brings you the goodness of Emergen-C in a fun, new, popping experience. There is no water needed so it’s super convenient. Just throw it back in your mouth. Feel the pop, hear the fizz, and taste the delicious natural fruit flavors. Emergen-C Crystals, Orange Vitality, and Strawberry Burst flavors for ages nine and up have 500 milligrams of vitamin C per stick pack. Look for Emergen-C Crystals wherever you shop. These statements have not been evaluated by the Food and Drug Administration. This product is not intended to diagnose, treat, cure, or prevent any disease. This is 99% Invisible. I’m Roman Mars. Denise Maso 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 sewed Halloween costumes and dress suits for her family and settled into her retirement.
Marion Renault [00:01:27] But old age has been difficult for her. In 2013, Denise–my grandmother–was diagnosed with Alzheimer’s disease.
Roman Mars [00:01:34] That’s reporter Marion Renault.
Marion Renault [00:01:36] As the disease stripped away her memory and cognition, it also shrank 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 Denise 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. 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 armchairs 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.
Roman Mars [00:02:30] This is what most dementia care looks like in the Western world. For decades, society has dealt with people with dementia and other forms of cognitive decline by storing them away in unstimulated and 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.
Jess Ballenger [00:03:10] Like I say, it’s not a good thing. You know, 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.
Marion Renault [00:03:23] That’s Jess Ballenger, 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.
Roman Mars [00:03:34] 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.
Marion Renault [00:03:46] 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.”
New Jersey Nightly News [00:04:06] And it’s a very cut and dried situation. Or I can take your blood pressure and say, “Yes, you’ve got high blood pressure. You’ve got hypertension.” And these are very quantifiable and very definable. Alzheimer’s disease is such that it’s really only established at autopsy after the fact–after the patient has expired.
Roman Mars [00:04:24] 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.
Marion Renault [00:04:38] 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. 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, antipsychotics, and sedatives to deal with patients. And residents could go months or years without stepping outside.
Roman Mars [00:05:12] All the while, Alzheimer’s gained a reputation as an ever-approaching wave of human devastation.
New Jersey Nightly News [00:05:18] 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.
Marion Renault [00:05:35] 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 news reports presented the disease as it is often described: “the funeral that never ends.”
Ms. Stenger [00:05:52] 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.
Jeffrey Kaye [00:06:06] What are you feeling?
Ms. Stenger [00:06:07] That I’d rather be dead.
Roman Mars [00:06:13] As the terror of Alzheimer’s spread, federal funding for Alzheimer’s research also surged. In the United States, it went from four million in the mid 1970s to 400 million by the year 2000. This explosion was driven by a fear-stoking publicity campaign.
Jess Ballenger [00:06:30] You have to show that people are suffering in order to get Congress to support research. And it works. Works beautifully.
Marion Renault [00:06:40] That money was almost exclusively invested in finding a cure or treatment for Alzheimer’s, a strategy that hasn’t panned out yet.
Roman Mars [00:06:48] And while it would be great to find a cure, very few resources have been used to study the lived experiences of people with the disease or to improve the spaces they inhabit.
Marion Renault [00:06:59] In fact, experts thought of nursing homes as a halfway technology, like the iron lung before the polio vaccine. Here’s Jess Ballenger.
Jess Ballenger [00:07:07] 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 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.
Roman Mars [00:07:42] As a result, many people with dementia live in spaces that are not designed with their specific needs in mind.
Marion Renault [00:07:48] 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 fishpond in the ground. 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.
Roman Mars [00:08:17] Throughout the West, most dementia care is like this. It’s impersonal, clinical, and disorienting.
Marion Renault [00:08:23] 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. It’s called the Hogeweyk, and it’s near Amsterdam in the Netherlands. Before the Hogeweyk existed, in its place, there was a regular nursing home called the Hogeweyk. When the Hogeweyk opened in the 1970s, it wasn’t yet the model for dementia-friendly design.
Roman Mars [00:08:50] It was six floors high, with corridors locked by keypads. Handrails flanked the white walls. Staff dressed in scrubs. Medical needs trumped human ones.
Marion Renault [00:09:02] Yvonne Van Amerongen worked on the Hogeweyk 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. Her father had died suddenly of a heart attack.
Yvonne Van Amerongen [00:09:16] One of the first things I thought was, “Thank God he never got to be in a nursing home.” That’s crazy that 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.
Marion Renault [00:09:32] It turned out her colleagues felt the same way. 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 Hogeweyk team agreed this couldn’t happen in a nondescript hospital environment like the one they were running.
Roman Mars [00:09:52] What they envisioned was an approach that optimized environments for people with dementia instead of imposing sterile, nonspecific design–something that prioritizes the needs of dementia patients above all else.
Marion Renault [00:10:05] Remember those trippy patterned drugs? One principle of dementia-friendly design is to minimize visual confusion with lots of natural lighting and uniform countertops and flooring. The school of architecture is still pretty niche, but it has a grand vision of a built-in social environment that can support–even soothe–patients with dementia. When the Hogeweyk began its redesign, it turned to a Dutch architect named Frank Van Dillen.
Frank Van Dillen [00:10:30] 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 life’s pleasures?
Roman Mars [00:10:55] Frank was hired by the Hogeweyk for their big redesign. At first, the team focused on small, affordable renovations to their existing buildings.
Marion Renault [00:11:03] They swapped out medical furniture for secondhand stuff and cheerfully decorated the living spaces. They installed a system of doorbells for private rooms and forbade staff from entering until after they’d rang the bell. And they shrunk the wards from 30 or so people down to groups of ten or 11 neighbors.
Roman Mars [00:11:21] Then in 2005, the Hogeweyk took a big leap forward. They tore down part of the original building and imagined something new in its place–a campus of buildings and spaces made specifically for people with dementia. In 2008, the new Hogeweyk 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 Hogeweyk until they die.
Marion Renault [00:11:53] But the Hogeweyk does not look or feel like a place of sickness and death. It feels normal. And that’s what’s so unusual about it. I’d heard about the Hogeweyk in my previous reporting on dementia care. And I’ve spent a lot of time watching my grandma’s transition from her longtime home to a new, unfamiliar holding space. I thought the Hogeweyk 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 Hogeweyk on a bright, windy June morning. And my guide that day was Eloy van Haal, one of the Hogeweyk’s co-founders.
Eloy van Haal [00:12:37] Residents already sitting in the sun. I see already a resident reading the newspaper or somebody reading the newspaper because I’m not sure it’s a resident.
Marion Renault [00:12:46] We started our tour in the Village’s main courtyard. 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, Hogeweyk residents benefit from a unique architectural concept: rings of privacy. In public places, like the courtyard, they’re in the outermost ring–total exposure. Just by sitting down, they can encounter dozens of passing strangers and friends. That’s where we found Nico, a 79-year-old Hogeweyk resident.
Eloy van Haal [00:13:21] Good morning.
Nico [00:13:22] Hey, how nice!
Eloy van Haal [00:13:22] I brought a journalist today.
Nico [00:13:22] What?
Eloy van Haal [00:13:29] A journalist.
Marion Renault [00:13:30] We stopped to say hello and chatted for half an hour. Nico told me his hometown is based where the Hogeweyk is located. He was a maintenance worker for Philips for 40 years. He collects coins.
Eloy van Haal [00:13:47] And he is awake at 6:30 in the morning.
Marion Renault [00:13:51] 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 Eloy tells him I’m there doing a story about the Hogeweyk, Nico lit up.
Eloy van Haal [00:14:05] He said, “Are you making a podcast about this good life here?” And Nico–he really likes it here.
Marion Renault [00:14:16] 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 6:00 p.m., and they wear embarrassing bibs for group meals. Here was Nico with a shiny watch, dark jeans, neat sweater, and black collared shirt. He seemed to be living out a different version of the same disease–one where his dignity and his appearance were left intact.
Roman Mars [00:14:52] The biggest design innovation at the Hogeweyk isn’t the carpeting or the lighting fixtures or any advanced medical technology. It’s how the Hogeweyk’s design protects autonomy and allows people to live the same way they did before the advanced stages of dementia.
Marion Renault [00:15:09] Every day, for example, someone from each of the 27 homes comes to the Hogeweyk’s supermarket to collect groceries for the daily household meal, which is decided on by the residents.
Roman Mars [00:15:21] But unlike most grocery stores, there are no price tags, and no money is exchanged at checkout. The Hogeweyk has conveniently edited out these complicated transactions so residents can still enjoy grocery runs without worrying about calculating budgets or carrying change.
Marion Renault [00:15:38] 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 and physical architecture,” Eloy 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.
Roman Mars [00:16:05] Of course, the Hogeweyk’s residents still need careful attention and clinical care. So, at any given time, between one and three care workers with medical training watch over each household, helping to lead meal preparation or washing up.
Eloy van Haal [00:16:18] 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 are still able to do–they will support you with that. And they will only take over if you cannot do it anymore.
Roman Mars [00:16:38] 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 gowns.
Marion Renault [00:16:50] 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 Eloy showed me around, we passed by a terrace. The door was wide open, and a staff member welcomed us into the house. We entered the living room, and Eloy explained who I was and what I was doing there. Music was playing from a radio, and one resident–Trix–wandered over, singing along. Trix joined in the conversation, dipping in and out of song to complain about the strong winds outside. The staff member told us Trix is a lover of music–especially classical music and songs from Amsterdam. It was one of those moments I love 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 is no shushing–no ignoring. The staff member understood Trix’s singing as part of who Trix is–how she expressed herself, her needs, her wants, her pleasures, and her displeasures. As she told Eloy, as long as there’s a good atmosphere, Trix enjoys herself.
Staff [00:18:20] She sings all day long–in the morning till evening.
Marion Renault [00:18:27] Altogether, people living at the Hogeweyk do something that is pretty unusual for people with dementia. 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.
Roman Mars [00:18:42] Near the main plaza, a billboard announces the week’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 with the same interests.
Marion Renault [00:19:05] Finally, we reached the innermost ring of privacy: the houses. We ran into Nico again outside his, admiring the family photos he had set out on his windowsill.
Eloy van Haal [00:19:16] He asks if we can look in his room. Of course, he invites us.
Marion Renault [00:19:21] Nico has been placed in this house alongside six other residents with similar traditional interests, like local news, folk music, and homey Dutch meals over there. 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. Nico was proud to show us the space and his belongings. Many of them were gifts, like the model airplane given to him by a former Hogeweyk resident and friend. Eloy pointed out people seem to enjoy giving him gifts. And Nico was humble–almost resistant to the idea that he could be so well-liked. I’d never been somewhere like the Hogeweyk. It felt so responsive–so true to the people that lived there. The design may sound luxurious and impractical to reproduce. And Eloy says cost is one of the most frequent questions from visitors. He tells them what he told me. The Hogeweyk 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.
Roman Mars [00:21:01] 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, the Hogeweyk opted instead for two household bathrooms–similar to what you’d find in a lot of family homes.
Marion Renault [00:21:16] The designers also opted out of certain traditional nursing home features. Frank Van Dillen, one of the Hogeweyk’s architects, says that they intentionally spread out social hubs to organically encourage physical activity, instead of building a dedicated physiotherapy room.
Frank Van Dillen [00:21:30] 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 theater. 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. 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!
Roman Mars [00:22:10] Another big question from visitors is about danger. The Hogeweyk’s design embraces everyday risk. A Hogeweyk resident could fall while roaming the neighborhood. Or they could jump in the fountain. Or they could cut themselves making a sandwich. But according to Eloy, that kind of thing doesn’t happen here more than it does anywhere else.
Eloy van Haal [00:22:31] I think something really went wrong where we as a society accepted that locking in people is better and safer and that safety is above life. That’s our problem. That’s our problem–our fear as more healthy people. But in our lives, all kind of things also happen. You are here in Amsterdam. It’s dangerous to walk around with all those bikes, trams, cars, weird tourists… It’s a very dangerous city. But you still decided to come.
Marion Renault [00:23:10] Eloy pointed to one way the Hogeweyk measures the value of all the autonomy and socializing it encourages. In the Netherlands, one in four nursing home residents with dementia is on antipsychotics. At the Hogeweyk, 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 Hogeweyk 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.
Roman Mars [00:23:47] There are now dozens of dementia villages and senior micro towns popping up in countries like Sweden, New Zealand, Canada, Denmark, and Australia. There are no dementia villages open yet in the U.S., 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.
Marion Renault [00:24:10] Meanwhile, the Hogeweyk itself continues to evolve. Eloy says he hopes new regulations could allow it to take another radical step forward by 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 Eloy’s methods have questions about that one.
Eloy van Haal [00:24:31] Others say, “Eloy, you’re completely insane. Because they have advanced dementia, they should be behind a locked door for their own safety.” But I’m convinced–according to my measures–that we should open the door.
Marion Renault [00:24:45] The someday open door is what I thought about as they left the Hogeweyk. Despite everything I’d seen and experienced, 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 Mamie Denise’s husband, Papy Angelo. 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 Mamie and Papy came to visit us in Rochester, Minnesota, he could not be kept from his walks. He spoke no English. He had Alzheimer’s. At no point in his walk would he know where he was. But we decided to put life above safety. 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.
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Marion Renault [00:30:47] Hi, Roman.
Roman Mars [00:30:48] 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. Can you explain this a little bit more?
Marion Renault [00:31:01] 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, and it just runs out. It was way more just a fact of a late symptom of being born.
Roman Mars [00:31:33] “Late symptom of being born” is an interesting way to put it. So, then what changed?
Marion Renault [00:31:38] 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 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?
Roman Mars [00:32:18] Wow, he’s really putting a fine point on it there, isn’t he? Yeah, that’s amazing.
Marion Renault [00:32:22] 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, which was controversial at its conception because a lot of officials thought that it would just duplicate research on aging, on strokes, and on heart disease that was already being conducted at these other existing NIH agencies. So, Butler, in his role as the first director, wants to prove NIA’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.
Jess Ballenger [00:33:05] So he thought to himself, “I need a disease.” So, you have Butler–he wants to make Alzheimer’s the cancer of the NIA.
Marion Renault [00:33:16] That is, of course, Jess Ballenger. 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.
Robert Butler [00:33:31] Alzheimer’s disease–a painful, devastating disease that accounts for half of the people in nursing homes. If we made a major commitment of research, we could bring that to an end.
Roman Mars [00:33:42] 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. I mean, so what is the result of Robert Butler’s campaign in this regard?
Marion Renault [00:34:02] Well, strictly speaking, in terms of numbers, funding for Alzheimer’s research absolutely boomed. And then, of course, on the other hand, its reputation also boomed. But it was this terrible reputation as what we call a “dread disease.” At least in the U.S., 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 largely disseminated stories of loss and grief–really tragic stories.
Jess Ballenger [00:34:42] We all know that story because it’s been told so many times through the media. But it’s the story of someone in the prime of life who’s cut down by this terrible disease. That is part of the meaning of Alzheimer’s as a dread disease that we must combat–we must fight–in the same way we have a war on cancer.
Roman Mars [00:35:02] I mean, I am so steeped in this thinking. I 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 that he raised awareness and made people fear this?
Marion Renault [00:35:22] 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–changes how you experience the world, 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 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 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 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–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 that we feel that every human has the right to.
Roman Mars [00:37:46] 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?
Marion Renault [00:37:56] 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 Trix–for example–in the story, who is singing, 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. 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 gerontologist Anne Basting talks about open ended questions like, “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. 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.
Roman Mars [00:39:34] Well, thank you, Marion. It’s been really interesting working on the story with you, and so thanks for bringing it to us. I appreciate it.
Marion Renault [00:39:41] Thank you so much for letting me tell it with you guys.
Roman Mars [00:39:53] 99% Invisible was produced this week by Marion Renault. Edited by Chris Berube. Sound mix by Martín Gonzalez. Music by Swan Real. Fact-checking by Graham Hacia. Our executive producer is Kathy Tu, Delaney Hall is our Senior Editor. Kurt Kohlstedt is our digital director. The rest of the team includes Emmett FitzGerald, Christopher Johnson, Vivian Le, Jayson De Leon, Lasha Madan, Jeyca Maldonado Medina, Kelly Prime, Joe Rosenberg, and me, Roman Mars. The 99% Invisible logo was created by Stefan Lawrence. Special thanks this week to Lotte Van Gaalen, Morten Gregersen, Johannes Pedersen, and the entire team at the Hogeweyk. 99% Invisible is part of the Stitcher and SiriusXM podcast family, now headquartered six blocks north in the Pandora Building… in beautiful… uptown… Oakland, California. You can find links to other Stitcher shows I love as well as every past episode of 99PI at 99pi.org.
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Canada Dry [00:41:57] I’m in the Canada Dry comfort zone, and there’s no such thing as overplayed Christmas music. Sure, you’ve heard this up tempo, pop infused Christmas song 100 times this week.
Listener [00:42:07] I can’t take it anymore!
Canada Dry [00:42:09] Always playing somewhere in the background, everywhere you go. But with the refreshing ginger taste of Canada Dry, it certainly sounds incredible. Drink it in. And don’t worry–that holiday banger won’t be here forever. Canada Dry–sip in your comfort zone.
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