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SANJAY GUPTA MD
Dementia Village - A New Experiment Out Of The Netherlands
Aired December 28, 2013 - 16:30 ET
THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT BE IN ITS FINAL FORM AND MAY BE UPDATED.
DR. SANJAY GUPTA, CNN HOST: I'm here in the Netherlands, specifically in a little village called Hogewey.
For the last four years, there's been this grand experiment happening here. You see, in this village, all of the residents have severe dementia.
You know, we don't talk about dementia very much, but if you consider the world, the developed world, 65 million people are expected to have dementia by the year 2030, close to a hundred million just 20 years after that, and what to do with all these people with dementia?
In many parts of the world, they are ignored. They live in these nondescript buildings, on anonymous wards, lots of white coats, nonstop television and hardly anything but sedation. But what if those wards could look something like this? Entire villages, dedicated to people with dementia.
GUPTA (voice-over): Welcome to Hogewey. It's a little village just minutes from downtown Amsterdam.
At first glance, it looks like any other small Dutch town. But look closer. It's not. Outsiders aren't allowed here. And everyone who lives within these walls has something in common. It's the last place any of them will ever call home.
(on camera): So, this is a neighborhood.
YVONNE VAN AMERONGEN, CO-FOUNDER, HOWEGEY: Yes, it's a neighborhood.
GUPTA: A neighborhood for people with dementia.
UNIDENTIFIED FEMALE: Yes, yes.
GUPTA: Yvonne Van Amerongen is one of the founders of this new age elder care facility. It was built in 2009 but only one of its kind anywhere in the world.
VAN AMERONGEN: I think one of the things that are very important to people with dementia is that this they don't understand what's happening around them. They don't understand the world any more.
We tried to help people understand what's happening and let them feel that it's OK.
GUPTA: For Cory Visser, everything is OK. She seems happy here, even more so when Theo, her husband of nearly 60 years, comes to visit.
(on camera): You come to visit here everyday?
(SPEAKING FOREIGN LANGUAGE)
GUPTA: How do you describe this place to your friends?
THEO VISSER, WIFE CORRIE IS A RESIDENT AT HOGEWEY (through translator): It's perfect. I wouldn't know a better place for her. It's a hundred percent good.
Before she came here, I visited five other places, and I definitely saw that this was the best place for her.
GUPTA: What makes this place better?
VISSER: This place is open. People can enjoy the seasons. They can really feel if it's cold or warm. They can visit a restaurant. They can drink a cup of tea and they are free to go wherever they want it go.
GUPTA (voice-over): Wherever they want to go, except in the real world. These sliding glass doors are the only doors that lock here at Hogewey. This is the only way in and only way out.
(on camera): This is the site where used to be a previous nursing home, right?
VAN AMERONGEN: Yes.
GUPTA: You worked that nursing home.
VAN AMERONGEN: Yes.
GUPTA: You had a transformation, if you will, yourself, where you basically decided that wasn't good enough. Was there a moment or was there some particular event that really sparked that for you?
VAN AMERONGEN: For me, personally, that was the moment that my mother called me and told me that my father had passed away suddenly. Nothing was wrong with him. He just had heart attack and died.
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 management of a nursing home. And I don't want my father to come there.
VAN AMERONGEN: That's crazy. My colleagues in the management team had similar thoughts and had one day we said, well, let's talk about these. Because this is very important and we set down and one day in November, and in 1992, let's take one day and decide on what to do to make nursing homes worthwhile living. And we did.
GUPTA (voice-over): A four-acre complex, home to 23 housing units and seven different lifestyle things, such as craft, culture, religious and urban living. Take a look over here -- the colors, the artwork, even the choice of dishware, specific to this particular lifestyle.
VAN AMERONGEN: And those people, you live with, should be people that could be your friends. People you would pick to live with, and not just the first coming around. Those people probably have the same ideas on life. The same values, and we call that lifestyles.
GUPTA (on camera): Sounds like a pretty good life.
VAN AMERONGEN: It's actually quite normal.
GUPTA: And a normal life. That's the key.
VAN AMERONGEN: It's normal. But it is very hard to be normal.
GUPTA (voice-over): Creating a sense of normalcy is the number one goal here at Hogewey. Often times, that means creating a routine and sticking to it.
(on camera): Well, if you walk in here, this will look like just about any other grocery store to you. But I want to point out things that are different. You see the same products -- juices, you can buy just about anything you want, cleaning products.
But you'll notice pretty quickly, there's no prices on anything. As you're about to see, there's no money exchanged hands either. The customers, as you might guess, are very different type of clientele here. They are residents of this village. They all have severe dementia. Often times they come here with their care-givers.
Ultimately, when they come up to the front desk after buying all of their products, they don't exchange any money. And Trudy, who is a staff member, is trained specifically to handle people with dementia.
JIM CARREY, ACTOR: Oh, in case, I don't see you, good afternoon, good evening, and good night.
GUPTA (voice-over): Some compared this manufactured reality to the movie "The Truman Show."
CARREY: That's the whole kit and caboodle.
UNIDENTIFIED MALE: Catch you later.
CARREY: All right.
GUPTA: A man played by Jim Carrey discovers his entire life is actually a TV program. Everything he thinks is real is a mirage, created by television producers.
(on camera): Do the people here ever feel -- I mean, did you ever -- did you ever get the impression that they feel like they're being fooled or duped in any way?
VAN AMERONGEN: Why should they feel they are fooled? We have a society here. A supermarket is not a show. It's a real supermarket.
VAN AMERONGEN: Maybe we're fooling them and we say it's OK what you're doing. But that's because we want to help people enjoy life and feel that they are welcome here on this earth.
GUPTA: For the rest of their lives, because here at Hogewey, a vacancy only becomes available when a current resident passes away.
GUPTA (voice-over): Ada Picavet has been making music with her husband, Ben, for as long as they've been together.
(on camera): How did you meet?
ADA PICAVET: In a pub.
GUPTA: In a pub?
ADA PICAVET: Yes.
GUPTA: Did you -- did someone introduce you or you just saw each other in a pub?
ADA PICAVET: (INAUDIBLE) and I went with a friend of me in there, and they were playing cards. But then, after, he offered me a drink. And bit by bit we fall in love until this moment.
GUPTA: Do you remember that, Ben? Do you remember the playing of the cards and buying of the drink?
(SPEAKING FOREIGN LANGUAGE)
BEN PICAVET: Oh, yes. Yes, yes.
GUPTA (voice-over): In comparison with Hogewey's other residents, Ben is a lucky man. These days, he can still manage to get a few words out here and there. But doctors warn his Alzheimer's disease is rapidly progressing.
(on camera): I hear a lot of music here. People singing, piano playing. How important is music? VAN AMERONGEN: Music is very important. Because people with dementia, we see the people with dementia and scientifically shown also that music is part that in the brain that functions the longest. We have even seen people that can't talk any more, they don't have the words to talk, but they can sing songs.
I've seen people playing instruments, music is one of them.
GUPTA: You come visit everyday?
ADA PICAVET: Yes. Sometimes I try one day a week. Not to come. So I do other things. But yes, normally six days a week and sometimes seven.
GUPTA: I think that's wonderful, but is it hard for to you do?
ADA PICAVET: And I don't think that it's hard or not hard. I don't feel fine when I didn't visit him, because he's still waiting for me everyday.
(SPEAKING FOREIGN LANGUAGE)
BEN PICAVET: Yes, yes. He likes that I'm coming.
GUPTA: What's the hardest part about all of this for you?
ADA PICAVET: Oh, now, communication. And I think you can see that she is losing so many things. But he's still a kind man. He's not aggressive. And that's wonderful.
GUPTA (voice-over): Unfortunately, aggressive behavior is not uncommon in late-stage Alzheimer's. Often times triggered by confusion or frustration. It can occur suddenly.
That's where resident social worker Marjolein de Visser comes in.
(on camera): You never leave your phone, do you?
MARJOLEIN DE VISSER, SOCIAL WORKER, HOGEWEY: No, I don't.
GUPTA: What happens? How many calls a day are you getting?
DE VISSER: Well, it depends. For now, we've got a -- (INAUDIBLE) here and he gets very nervous and agitated, and aggressive sometimes. So, I have to pick up and go in there and try to calm him down.
GUPTA: Is that the most common -- sort of -- what's the most common sort of call that you get?
DE VISSER: People are nervous and restless. Every person, we have sort of a trick book.
GUPTA: You have a trick book?
DE VISSER: Yes.
GUPTA: So, for this person who is aggressive, what are your tricks?
DE VISSER: Well, sometimes I go there and I say, I was looking for you. And be really enthusiastic. So he thinks she knows me.
GUPTA: So you have to sort of be creative.
DE VISSER: Yes, really creative. Yes.
GUPTA (voice-over): Creativity usually comes at a higher cost. But here, that's not the case. In the Netherlands, it's a state run system.
(on camera): What about the cost? How is it paid for?
VAN AMERONGEN: It's a Dutch system and we have the same budget as any other nursing home in the Netherlands. We have no more. No less.
GUPTA: We'll take anybody. What about mild? Too mild a dementia? I mean, what's the criteria?
VAN AMERONGEN: Yes, here in the Netherlands, we have different indications and you need the indication for severe dementia to come here. If you have mild dementia, then you don't have indication to come here.
GUPTA: And I'm sure there's specific clinical criteria. But can you describe generally what that means?
VAN AMERONGEN: Generally, it's that somebody needs attention, support for 24 hours a day.
GUPTA: You have 152 people living here?
VAN AMERONGEN: Yes.
GUPTA: As you say, people come here but then they also die here. You just saw it today.
VAN AMERONGEN: Yes.
GUPTA: How is that for you?
VAN AMERONGEN: Well, you know, for a lot of people you think, well, they've had their life and they are ready to die. You see that some people are relieved that they can die.
GUPTA (voice-over): Up until that moment, they are watched over and comforted by full and part-time caregivers who outnumber the residents 2-1.
You see, every single worker, and volunteer working in the supermarket, restaurant -- even the hair salon, has been especially trained to take care of people with severe dementia.
(on camera): So part of having a normal society is being able to get your hair done as well. UNIDENTIFIED FEMALE: Yes.
GUPTA: How busy are you?
UNIDENTIFIED FEMALE: I think it's also a very special work.
GUPTA: She's trying to hurry up? Is that what this is?
UNIDENTIFIED FEMALE: No, it's not hurry up. You do it.
GUPTA (voice-over): The simple act of brushing Ina's hair seems to have a calming affect.
Ina looks like Ina. And hopefully she still recognizes herself in the mirror.
The same, sadly, cannot be said for everyone I met.
GUPTA (voice-over): Spending a few days here in Hogewey opened my eyes to a world of possibilities of what growing old could look like. But all of the comforting stories couldn't soften the blow they came with meeting the toughest cases.
(on camera): How old are you?
UNIDENTIFIED FEMALE: I've been born in --
GUPTA: Hard to remember.
UNIDENTIFIED FEMALE: 1926, I mean.
UNIDENTIFIED FEMALE: Yes, I mean, I don't know exactly.
GUPTA (voice-over): I don't know exactly. You hear that a lot around here, as time goes by, the grasp on reality fades.
For residents like Yole Ferhof (ph).
GUPTA (on camera): So, you say you have a job?
UNIDENTIFIED FEMALE: Yes.
GUPTA: What do you do?
UNIDENTIFIED FEMALE: I guess a -- I don't know. Tomorrow I know it. Then I have to go to it.
GUPTA: Are there absolutely no-nos? I mean, things that you should never do when you're dealing with someone with dementia?
DE VISSER: Yes, correct them. Say, no, don't do this, don't do that. They won't remember, so why would you? They're not a child or something.
GUPTA: Are you happy here?
UNIDENTIFIED FAMALE: Oh, yes. Yes, yes. I am a happy people. I like, I have children, I have a father and a mother.
GUPTA: When is the last time you saw your parents?
UNIDENTIFIED FEMALE: My parents?
UNIDENTIFIED FEMALE: Oh, yesterday.
GUPTA: You saw them yesterday?
UNIDENTIFIED FEMALE: Yes.
GUPTA: Do you try and jog people's memory, refresh their memory? Or do you just let them -- do you redirect them? What is your strategy?
DE VISSER: It depends on the face of dementia. For example, very often, people ask me, where are my parents? That's a daily question. And in the beginning you can ask if a person is not so far in their dementia, you can ask, how old are you? And someone says, well, I'm 84.
You say, well, how old would your parents be? Then they can think and well, oh, that doesn't make sense.
GUPTA (voice-over): Yole's (ph) dementia has progressed too far to process that kind of logic.
But if it bothers her at all, you can't tell.
And with so many other residents just like her, there are special modifications here to keep everyone safe.
(on camera): While sometimes the small things make a difference in a village like this. Take an elevator for example. Maybe you don't know what this does, exactly, but there is a censor over there. It turns on that button there. That calls the elevator.
I didn't have to touch anything, because perhaps I wouldn't know what this door was going to do. But now when I walk into the elevator, again without touching anything, from my weight alone, it senses that someone is here, and it's not going to take me up to the next floor.
(voice-over): Study and study shows that stimulating the mind is the best way to slow the brain's decline. At Hogewey, there are 25 clubs, including this one, for example, baking. Just to help keep residents active. DE VISSER: When I ask someone to finish the table, I won't ask them to do the table because that is like asking you, make me a puzzle, a thousands pieces. I give them the last plate and say, can you do this for me. You do it and I say, thank you. Because of you, we can eat.
GUPTA (on camera): You say that there are results.
VAN AMORENGEN: Yes.
GUPTA: Do you think people are physically healthier living in this environment?
VAN AMORENGEN: Yes. We see that people are invited to exercise more, because everybody can go outside, walk in the sun. Social contacts are very important for people with dementia. It helps different parts of the brains to connect and we see that people meet others here. This life helps people live a healthy life. That helps people to get strong.
GUPTA: And that's been shown now. And in terms of eating, they eat better. In terms of getting off of medications and living longer. Do you actually see that?
VAN AMORENGEN: Well, we haven't had scientific research on living longer. We haven't done that yet. In 1992 we started this. And people came in with the same indication and they would stay an average of two, 2 1/2 years. Now, it's 3, 3 1/2 years. It's not scientific, but I can count.
And here, people can still be their self, they can be human. They're not just a person with dementia or they are still a person and they can do whatever they like.
DE VISSER: Hi.
(SPEAKING FOREIGN LANGUAGE)
DE VISSER: I have to go.
GUPTA: Duty calls?
DE VISSER: Yes. Bye.
GUPTA (voice-over): One of the most difficult residents has barricaded himself inside his home. It's happened before. And just like that, Marjolein is on her way.
(on camera): You talked about the fact that the place that you used to work, you couldn't imagine your own parents being there. It's always difficult to think about our parents in these types of situations. But how about now, for your mom?
VAN AMERONGEN: My mother has a dementia, mild dementia. She lives in a home for the elderly. And I see that she is very happy there.
GUPTA: Where does this go from here for you? Right now, have you this neighborhood again. A normal neighborhood as you put it, 152 residents. What would -- what would you want it to be in five or 10 years?
VAN AMERONGEN: What we are looking at is we want it to be possible for our residents to live here too. But that's in the system we have here in the Netherlands at the moment, that's not possible. Not with the budget we have.
GUPTA: Could this work in other country? You've traveled around the world. Could this work in other cultures, other countries?
VAN AMERONGEN: The concept could work. This is Dutch. We have Dutch designs. We have Dutch cultures, Dutch groups, lifestyles.
Actually, what it means, this concept, is that you value the person, the individual and they just support them to life their life as usual, and you can do that everywhere.
GUPTA: On a physical level, people here require fewer medications. They eat better and yes, live longer. But on a mental level, they also seem to have more joy. It's the difficult thing to measure, but it's the most important thing according to the leadership here in Hogewey.
Now, could this work in other parts of the world? That's the next question.