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Advice From Your Advocates
Advice From Your Advocates
Inside the Dutch Dementia Village: Revolutionizing Dementia Care
What if we completely reimagined dementia care? In this eye-opening episode, Bob Mannor and Amy Persails take you inside their extraordinary visit to Hogeweyk, the revolutionary dementia village in Amsterdam that's transforming traditional memory care. This unique approach to elder care champions dignity, freedom, and quality of life for people with severe dementia, offering a new perspective on the challenges caregivers face.
Within the cobblestone streets of Hogeweyk, you'll find real grocery stores, restaurants, and pubs—not just window dressing but symbols of a fundamental shift in philosophy compared to typical American facilities. Here, residents are encouraged to wander freely, make choices, and embrace normalcy, significantly reducing the stress and agitation that often accompany traditional dementia care.
Remarkably, Hogeweyk experiences virtually no sundowning or agitation, achieving this not through medication or restraints, but by fulfilling fundamental human needs for autonomy and respect. One resident follows the tour group for hours, happily engaged and content, challenging our conventional practices that often misinterpret such behaviors.
The living arrangements further illustrate this revolutionary concept. Residents share homes based on their cultural backgrounds and prior lifestyles, fostering a sense of community. With just one caregiver per household during the day, and no overnight interruptions, residents enjoy restful nights, contrasting sharply with many nursing facilities.
Join us as we explore this transformative model of dementia care that may reshape your understanding of elder care. For caregivers, families, and professionals alike, this conversation prompts us to reconsider our most basic assumptions about memory care: what if freedom, rather than control, is the key to improving lives?
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Host: Attorney Bob Mannor
Guest: Amy Persails, CECC
Executive Producer: Savannah Meksto
Assistant Producer: Shalene Gaul
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ABOUT US:
Mannor Law Group helps clients in all matters of estate planning and elder law including special needs planning, veterans’ benefits, Medicaid planning, estate administration, and more. We offer guidance through all stages of life.
We also help families dealing with dementia, Alzheimer’s disease, Parkinson’s disease, and other illnesses that cause memory loss. We take a comprehensive, holistic approach, called Life Care Planning. LEARN MORE...
You're listening to Advice from your Advocates, a show where we provide elder law advice to professionals who work with the elderly and their families.
Speaker 2:Welcome back to Advice from your Advocates. I'm Bob Manor. I'm a board-certified elder law attorney in Michigan, and today's topic is something that I know a lot of. You've been talking about this for a little bit and mentioned this to a number of guests on our podcast that we had an opportunity to go to Amsterdam and visit the dementia village which is called Hokevik in the Netherlands, and it was a really great opportunity to see a different way to plan for and to care for dementia plan for and to care for dementia. And so fortunately we were very fortunate that it wasn't just me, amy Persales, who is our planning services director, and Kelly King Penner, the other partner in the law firm.
Speaker 2:All three of us got to go with a group of lawyers and social workers who were able to look at and observe this dementia village in Amsterdam. It is the first dementia village and there are a few places in America that are trying to repeat this and there's other places throughout the world that have you know, are trying to repeat the success of Hogevik, and a lot of you have heard of this. You've read articles, you're excited about it. Some of you put it on your bucket list to go visit.
Speaker 2:We experienced because it was so transformational as far as our thought process, and so I have Amy here, who also did the tour, and it was a multi-day experience where we were able to really immerse ourselves into the Dementia Village. I thought it would be useful, instead of just me talking about it, to have Amy here and kind of explain what we experienced there, because it's a whole different way of thinking about caring for dementia. So, amy, the first question I have for you is what are your initial impressions of when we started out at that, the first day at Hokevick? What were your initial impressions?
Speaker 1:It was overwhelming. I would say first the village itself, the first interaction that we had, and we saw a few residents walking around, but we were taken into this theater area where they gave us more of a background, some rules, no pictures. Right, no pictures, just a lot of things that were very enlightening.
Speaker 2:It was not a tourist opportunity to take selfies and promote yourself. That was not what this village is about. It's really about the residents and it really is about the residents. Everything we saw was about the residents.
Speaker 2:So I want to expand on what you said about going into the theater in the first day, that we kind of started there and you know I'm a person that has lots of questions, always right, I can't help myself if they start telling us about what's going on and I just have questions. And so I started asking all these questions and they were kind of like well, just wait and see, wait and see, you know. So I had questions like well, what happens when family visits? Ok, but what happens if somebody falls? But what happens if you know what happens at night, you know? And they were just OK, yep, we're going to answer all those questions, but wait and see.
Speaker 2:And I wasn't satisfied with that, but I was once I waited and it was very interesting because all the questions I had particularly as a lawyer, because lawyers tend to be very skeptical about things and they were all answered by observing it. So I want to start off with a story about our experience, because I think they broke us up into a couple different groups and we had, you know, a guide. One of our guide was one of the founders, and then there was another very talented and well-spoken guide, so we had the second one and she was great. So we were just going to walk around the village and they made a point of you know, this is not a tourist attraction.
Speaker 2:We're not going to be taking selfies, we're not going to go out, we're going to talk and people are going to interact with us. Tell us a little bit about our experience when we, you know, kind of started our what we would have said is a tour, but really was just walking around the village about the folks that came up and kind of joined our tour.
Speaker 1:They did tell us that some people may walk up and join our tour, but until you experience it, you just don't understand what they're experiencing. And we had a nice lady that walked up and this was our tour guide and she explained. You know, we were from America and In Dutch.
Speaker 2:Yes, because the person didn't speak English.
Speaker 1:She didn't speak English. She didn't speak English. She explained to her in Dutch and she told us after what she talked to her about and invited her along if she wanted to tour with us. And she did. She stayed with us almost the whole time. She walked around with us. She was very engaged and Iris was speaking to us in English the whole time. She would stop and have a conversation here and there, but the woman was very engaged. She walked around with us. She was just a part of her day. She was enjoying herself and they liked to have visitors. All of the residents were friendly. Everyone just enjoyed having people there.
Speaker 2:So and I know this is challenging so don't, if you're a caregiver, if you work in the long-term care industry, just stop imagining how we might do it here first and just accept how they do it there. Let's just look at it that way first, and then we can talk about how some of it might be adapted here. Because I know, as people in the caregiving industry would be like, okay, you allow them to wander aimlessly? And the answer there was yes, we do allow them to wander, and it was built like a traditional Dutch village allow them to wander. And it was built like a traditional Dutch village, meaning it was cobblestone, right, so not the safest environment to be walking on. We're going to talk a little bit about that as far as safety and all of that, in a minute here, but I want to talk a little bit about our visitor. Amy and I have both visited a lot of memory cares, a lot of great places, and they're doing a fantastic job. But the typical answer when a patient or resident you know starts, you know, being curious about what we're doing is they try to distract right. Distract is a word that we use a lot. I've used it so many times to try to help families understand how okay somebody's getting agitated, let's try to distract them. Distract is not a word they use at Hokebeck.
Speaker 2:I was amazed by this. She would stop our tour and answer her question. Now she later shared with us some of the times that she was talking in Dutch and this was a native Dutch speaker. Right, iris is a native Dutch speaker. She said she was not speaking in ways that I could understand. It was and this might be not the best way to say it, but what I would call gibberish. She was not speaking in a way that she could respond to, but she was very patient, listened carefully, spoke to her and then would stop our tour to talk to her. There was such a respect for the residents there and patients there and never dismissing them, never distracting them to the point that I had a question. So before I tell you about the question that I asked that got shot down pretty good, I want you to tell a little bit more about the village with regard to the grocery store and the bar and the pub and the music center and all the rest of the stuff.
Speaker 1:It was amazing. So research online? Right, we do research online, we check things out and I thought, okay, a grocery store. The questions were how does that work?
Speaker 2:Is it?
Speaker 1:fake. Is it fake? Do they just bring the stuff back after they take it? No, they buy their groceries for that day, the meals for that day, they plan out. They have a caregiver in the home. Talk about the different types of homes and there is a caregiver in the home that they come in and they discuss what do we want to have to eat today? And they prepare and plan their menu for the day and they go to the grocery store.
Speaker 1:So someone you know, a few of the residents, may go with them to the grocery store and they actually buy their food from that grocery store and they just keep a tally for the house to determine how much they spent there and whatnot. But if a resident goes into the grocery store and takes a box of macaroni and cheese, they can take a box of macaroni and cheese and take it back to their home and prepare it or whatever they need to do with it. But there are real. There's milk, there's bread, everything that you would think of a grocery store. Now it's very small stocks and they have fresh vegetables and fruit and all of the things that they have brought in. Even they said that other people from other communities come there to grab a gallon of milk to take home.
Speaker 2:that day you can come in from the community and get a drink at the bar. You can go to the grocery store. Yeah, go to the restaurant.
Speaker 1:Yeah, it's just amazing, and the activities that they have the music center the theater, they have movies, they have tons of open outdoor space.
Speaker 1:So when it's nice outside which it was when we were there it was beautiful weather and they just walk around outside. One gentleman watched him for the two days that we were there and he just walked around. Once in a while he would stop and speak with someone, but he just walked around and that's what he wanted to do. He just, he just walked around and that's what he wanted to do. And, um, you know, he was happy, he was very happy with that, just walking around. And honestly, I would be the same way, you know, if you just let me, don't lock me in a room, let me let me walk around and have interactions with people.
Speaker 2:It was just very nice to see that. So I had a question, cause I was still kind of stuck in the way that we do things here, and so we were standing outside the grocery store and so I talked to Iris and I said I'm not really understanding this, so what if somebody comes in? So before I go on to this story, we want to make it clear these are not light dementia, this is not early dementia, so they have in the Netherlands. They are not light dementia, this is not early dementia, so they have in the Netherlands. They have definitions of levels, and so the top two levels are five and seven. I don't know why they skip six, but they do. So there's five, and five is a really high level of dementia.
Speaker 2:Okay, you cannot be a resident of the dementia village of Hokevich until you're at level five. So all of the early stages of dementia are not you can't. So I think both of us imagined that they were going to be. Oh, these are folks that you know maybe they need a little help, but they just need a little guidance, but they really don't. You know, they're not really severe dementia. These were severe dementia and it's a requirement that you be there, and so my question was okay. So you have these folks kind of walking around.
Speaker 2:I'm still not quite getting this because, like in the United States, we're all about safety and making sure that nobody falls. You know, this is not what we do for regular folks. This is what you know. If somebody's following me around to make sure I don't fall, I fall all the time. I'm clumsy. So you know, amy currently broke her ankles.
Speaker 2:The idea is that's not what we do for regular. You know situations and yet, for some reason, when somebody has dementia, we're like oh, we can't allow them to have any risk. Okay, well, I believed that for years and this was the. This is why it was kind of transformational for us to. They're like okay, but you know, people fall sometimes. You know that's is that that's okay. You know, if it's about quality of life, you have to have a little bit of risk involved in that.
Speaker 2:But that's not what we understood. That's not what I understood. One of the things I was like okay, there's this grocery store and you've got people with really pretty severe dementia and Alzheimer's. What if somebody walks in and just takes something off of the shelf and walks out? And I said, well, I imagine you just try to distract them and then put it back, and they don't use the word distraction there. This is something I have been telling people for 20 years now, that when you have somebody that has behaviors, we try to distract them and put them onto something else and they're just like no.
Speaker 2:We deal with it on a case-by-case basis. Sometimes it's something that we'll work with their caregiver and it might be returned. Sometimes we charge the account, sometimes we just charge it to their house. They're there, you know which is part of their. You know each.
Speaker 2:We're going to talk about houses in a minute here, but each person is assigned to a specific house with six to what about six people in each house, and so that was just. You know, that was not the way I normally expect things. When we have what we would normally call bad behavior, their answer is well, that's not necessarily bad behavior, we just just deal with it. Everybody's a little bit different.
Speaker 2:Some people we might say, hey, you know, what are we doing with that? Some people, that's not the best answer because they might get upset by it and so we just let them take it and maybe assign it to their house, or maybe, if they have some money, we assign it to their account. You know, let's talk about behaviors, because that was the fascinating thing about this. I think that was the most interesting thing in our office. So we're an elder law office. We help a lot of people with a lot of different long-term care needs, but a good portion of our clients have a loved one with dementia and what's coming up more and more is what we call behaviors, and that might be wandering, that might be aggression, that might be whatever it is, and they have very little behaviors at Hogevec.
Speaker 1:We never saw it. Yeah, why is that it's?
Speaker 2:not that they don't have any behaviors in Holland. It's not that they don't have any behaviors in the Netherlands, it's they don't have it there. And there's a couple of reasons, and I want to get into one of them in a minute, but one of them was freedom, right? Yes, so I'm the type of person that needs to be alone sometimes. I don't always like to be around a lot of people, and so if you tell me I can't go and walk around, you know what does that sound like? Wandering?
Speaker 1:Right.
Speaker 2:And so if you tell me I can't, they would say, have a behavior of wandering and I can't go and just be by myself and walk around by myself for a little bit, I might have some behaviors. Exactly, exactly the idea is they don't, and then talk about sundowners and how, if you want to talk about because that's a big thing that we hear here and they said, really, sundowners is not really a big thing in Hokebeck.
Speaker 1:No, that's why they let them have their freedom. They're able to walk around all day. The gentleman in question. So one of the things Bob had brought up about the falls, he had weights on his ankle. Yeah, which is new.
Speaker 2:I asked. My wife is an occupational therapist and I asked her about it and she said no, I've never heard of that, but it makes a ton of sense so that they can feel their steps, because part of the thing about dementia is the brain's not always connecting everything. But if you, if you emphasize it by putting ankle weights on, you're more likely to feel your steps and less likely to fall.
Speaker 1:That was. That was just amazing information I'd never heard, and that was one of the first things that I brought back here to the social workers that this could actually be transformational because, first of all, it actually triggers their brain to make bigger steps, so they're not shuffling and they're not falling, but it also all of that walking all day long with ankle weights around your ankles will make you kind of tired, right, and they don't have sundowner problems because they give them that freedom, the ability to just walk around, interact with others. They're not necessarily no, in some cases maybe, but they're not laying in a bed all day.
Speaker 1:They're not cooped up in a room all day where they're not able to get around. Remember, we only said there's one caregiver for six or seven people in a home and they don't have a caregiver at night. There's no one there at night with them, but there are people workers in the village.
Speaker 2:I know a lot of you are scared by that. We're going to talk about that in a second.
Speaker 1:There are workers in the village and they can deal with things as they come about, because they don't need it. Because they don't need it. They go to sleep, so they used to they sleep.
Speaker 2:They told us about it. They used to have the caregiver stay in the house at night and then they realized it was unnecessary because of the nature of things. So the one thing I want to point out in relation to that is care is always present. So it sounds like this is all like hippie, free for all kind of stuff, right, and so the reality is care is always present. So the woman that followed us and she really did stay with us for the whole tour and it was amazing because she was interested she didn't understand, and the guy, iris, told us that she could not have understood everything that we were talking about because she doesn't speak English and we were speaking mostly in English, but she was engaged, she was leaning in, she had a good day that day because she got to spend time with the Americans and she just had a good day that day. And it didn't matter that she didn't understand, because probably somebody with dementia is not going to understand that but she had an opportunity to participate, to be respected, to be heard, to be acknowledged as a person and not as a invalid. That needs to be served, which is something you know. The service mentality is something that they really try to avoid there. But the key on this was care is always present.
Speaker 2:So, as we were concluding our walk through the village, it was fascinating to me because my question was okay, I know, you have lunch in your houses.
Speaker 2:Like, each house has their own lunch, each house has their own dinner and it might be different, and we'll talk about that in a second, about how each house might have a different dinner. It's not everybody gets the same thing. And so I was like, okay, how does this work? Because people are wandering around and we never did get the name of the woman. I'm not sure that we would be able to pronounce her name because it would have been a Dutch name and there's a lot of consonants in Dutch names. But we did not get her name. But we saw a caregiver walking her back to her house at lunchtime and it was just natural. It was very natural. So let's talk a little bit about the houses, because I think that's important for folks that are really interested in Hokovic and the Menchie Village about how the houses are all very different, and so tell us a little bit about the cultural differences between each house.
Speaker 1:So if you grew up in an urban area of the Netherlands, then you would be in an urban home, and so you have residents and people that you're staying with in your home that have grown up basically in the same type of environment. So you might if you grew up in a rich area. You influenced.
Speaker 2:Rich area.
Speaker 1:You grew up and you had the nicer things. Those homes have fine china, where the other homes may not. They don't care about that fine china, right, they have the nicer china, they have the crystal lamps, they have all of those types of things when another home isn't like that. But they didn't grow up that way.
Speaker 2:So I would bet, amy, that you and I, when we were growing up because it was, there were some set plates that everybody had. There were set couches that everybody had. I would bet that in your house you had the same couches that my parents had, the same plates that my parents had, and that's what they do. They don't do the most modern thing because those plates and couches are not that common right now, but they go back to what they would have known, you know, would have been comfortable for them. And so the people.
Speaker 2:Netherlands is very interesting because it's, you know, european and all of that, and I want to get back to that just for a second. But there is a whole lot of different people. There's people that grew up on a farm, and so those folks they typically make their meal plan more of a meat and potatoes kind of a thing, very traditional Dutch meal. And for those people that have traveled a lot internationally or, you know, to different countries, and so they have a more eclectic, you know, meal schedule, there's folks that just lived in the cities, but they try to set it up that way cities, but they try to set it up that way. One of the things and this is just down a tangent here, but the one thing I really appreciate about going to Amsterdam, which was really interesting in the United States we have sliced bread, and the thing about sliced bread is that means it gets to be kept on the. They put preservatives in it and then keep it on the shelves for many months and then or I don't know, I might be exaggerating, but they keep it on the shelves and then we keep it on the shelf and it doesn't, you know, turn green for a while. And it's traditional in Europe that you buy your bread every day. It's fresh bread every day, and so that's what they do there. You know they don't skimp on those types of things and it's very traditional. So they try to make sure that they, you know, match the people with what their comfort level is.
Speaker 2:I want to tell one more story and then we're going to wrap things up here, because this is just an introduction and we, hopefully, will dive into this a little deeper. As far as I know, we haven't really given you much information about what could you? I know this is pie in the sky for America, I know this isn't realistic, that we could do this, but Amy and I have talked a lot about what could we implement here, so we'll do another presentation on what could we take from that and implement here. But I want you to tell the story about the woman that we saw walking around and I was really nervous for her because she was carrying this actual glass cup and she was pretty stable on her feet, but she wasn't really all that stable. She's carrying this glass cup. Did you see that? Did you experience that?
Speaker 1:so tell that story in europe, apparently that is a thing like they don't use plastic silverware they don't use plastic cups. Everything is glass. Everything your uh, even your soda is in a glass uh bottle right so everything is glass, which amazed me. And it goes to even the pub. You know they go into the pub and they can walk out of the pub with a glass and it's a normal thing. If she were to drop it, they would just sweep it up and she did.
Speaker 2:Yeah, we saw somebody. They dropped a glass in the United States. We would have freaked out about that. How did you get that glass? Whatever the safety you know. Whatever, they just helped her make sure she didn't get caught and then immediately sweeped it up. It was fine.
Speaker 1:Nobody cared, nobody cared. Yeah, it wasn't a big deal.
Speaker 2:Yeah, so one of the things and we'll just kind of wrap up with this is, you know, trying to sterilize and create everything as a safety thing. It tends to be our nature here in the United States, particularly with somebody with diminished capacity. Somehow and it's our parents, I get it we're more concerned about their safety than their quality of life. I don't know about you. Actually, I do know Both of us probably make some bad. Know about you. Actually, I do know Both of us probably make some bad decisions about our health, right, and we choose to do that Like we know, it would be better if I got up at 6am and jogged every day.
Speaker 2:It would be better if I only ate, you know, nonfat, low fat, but I understand that's what we choose to, and the idea of taking those choices away from folks is the concept of Hokevich is that we really want to give people the ability to have the best quality of life. So thank you for joining us today. We will do more on this. If you enjoyed this, don't forget to subscribe to our podcast at any of the places that you listen to podcasts. Thank you so much.
