How can we reimagine elder care around human connection? : NPR



MANOUSH ZOMORODI, HOST:

It’s the TED Radio Hour from NPR. I’m Manoush Zomorodi.

(SOUNDBITE OF MUSIC)

ZOMORODI: And I want to give you a little tour through a very special village in the Netherlands.

YVONNE VAN AMERONGEN: You enter and you come in and you’re on the center square. To your right is a theater with red curtains and music and a place to have coffee or a glass of wine.

ZOMORODI: This is Yvonne van Amerongen.

VAN AMERONGEN: When you go to the left, you enter the shopping mall. The shopping mall has a pub with Dutch music and beer and wine and fun. And that’s every evening. And we come into a small neighborhood where several houses are for people. There are gardens. You can walk around in the plants. And every place has its own feel. Everywhere you can meet people, the – meet people that work there, the people that live there, the people that visit. It’s a wonderful place to live.

ZOMORODI: And if you’re thinking this village sounds pretty normal, well, that’s exactly what makes it special. It’s actually a place for people with dementia to live regular lives. It’s called The Hogeweyk.

VAN AMERONGEN: And The Hogeweyk is actually a nursing home, but it feels and looks like a nice place to live.

ZOMORODI: The Hogeweyk started out as a typical hospital-like nursing home back in 1993.

VAN AMERONGEN: Yes. Well, the Netherlands was actually one of the first countries that had nursing homes.

ZOMORODI: I didn’t know that.

VAN AMERONGEN: Yeah. And we were one of the first nursing homes in the country. And so we had a very old building. And it was built as a hospital and not as a home where you live. And at some point, we said, well, we have to do something about this because we don’t want our own parents to live here should they have dementia. We don’t want to live here ourselves.

(SOUNDBITE OF MUSIC)

ZOMORODI: What was wrong with it, though? I mean, you seem to like lovely people. And you know, I’m sure the level of care you were providing was very good.

VAN AMERONGEN: Yes. But what we were offering was a hospital-like environment. And nobody wants to live in the hospital. It was a ward. All they had a bed and a night table, and that was it. And these people were always looking for how do I get home? This is not my home. And we said for these people, it’s not possible anymore to go home. So we should offer them a place where they feel at home, a place where they can have their own life.

ZOMORODI: Feeling at home, feeling safe, comfortable, cozy – that’s what we all hope for in our later years. And for many of us, there comes a time when we need to be looked after and a time when our loved ones need us to look after them. But how do we know if we’re truly offering what’s best? Is there a right and wrong way to be a caretaker?

Today on the show, we’ll explore the ways that we tend to our parents, our children and ourselves, and how we can do a better job asking for support from others when we truly need it. So back to Yvonne van Amerongen and dementia care. Over the course of her career, she’s seen why dementia is a particularly difficult condition, both for the people experiencing it and the people providing their care.

VAN AMERONGEN: Dementia hits the brain. What we see with people that have to live with dementia is that parts of their memories disappear. They forget how to do things. They forget parts of their life. Actually, I remember my grandmother, who also had dementia and she lived 40 years in that house – was a big house. But then the phone rang – and at that time, we had phones on the wall – and she couldn’t find the phone. She knew that there was a phone ringing, but she couldn’t find the phone. And that’s what’s happening with people with dementia. We see that people mostly know what was happening in the past. They go back in time. They understand the past, and they don’t understand the future and the day of today.

ZOMORODI: Here’s Yvonne van Amerongen on the TED stage.

(SOUNDBITE OF TED TALK)

VAN AMERONGEN: These people wanted to have a life and the help – our help – to deal with that dementia. These people wanted to live in a normal house, not in a ward. They wanted to have a normal household where they would smell their dinner on the stove in the kitchen or be free to go to the kitchen and grab something to eat or drink. That’s what these people needed. And that’s what we should organize for them. And we said we should organize this like at home so they wouldn’t live with a group of 15 or 20 or 30, like, in a ward. No, a small group of people – six or seven – family like, like living with friends.

(SOUNDBITE OF MUSIC)

VAN AMERONGEN: What we saw later when we started with those small groups of people living a normal life, we saw that people at 5 o’clock would gather around the table while the professional was peeling the potatoes and cleaning the vegetables and asking people how should I cook this or what did you do with tomato soup, things like that. And then they would all have a drink. And it was completely relaxed. We often had people from all over the world that worked in nursing homes come and visit us. And we would come in and say hello and leave again. And they would say, what’s happening here? – because in our nursing home, at 5 o’clock, it’s a disaster. Everybody is confused. And here, we see people sitting around the table, having a relaxed talk with others and watching what’s happening and waiting for dinner to come.

ZOMORODI: There’s a peacefulness.

VAN AMERONGEN: Peacefulness, yes.

ZOMORODI: And you talk about their living setup. You develop something that you call lifestyle groups. These are households where people who share similar interests live together. Why is that so important?

VAN AMERONGEN: (Laughter) Well, like my mother – cultural lifestyle – she used to travel a lot with my father. They were interested in art, in music. Household was not important. You don’t need to vacuum every day and things like that. They like to not eat very traditional Dutch food but try Chinese and Thai and French and things like that. So that was my mother. Other group is, for instance, the homemakers group. This is people that were – the household is very important. You cannot have your first cup of coffee in the morning if you didn’t do the dishes. The house isn’t clean. You should vacuum every day. And when it’s in order, when you have done your housekeeping and your food is on the stove, you can have coffee with the neighbors.

ZOMORODI: This just – it’s interesting. The more you talk about this, the more it makes me think that taking care of someone isn’t just making them feel, as we describe, peaceful, calm, understanding where you are, having your daily habits. But it’s about holding on to your identity. It’s about not feeling lost in yourself.

VAN AMERONGEN: Yeah. It’s respecting the person. It’s total respect for the person you are. And that you have dementia is something that needs care but not important for your life. It shouldn’t be important for your life. Your life is something else. Your life is belonging to a group. Having friends, going to the pub or a theater is living, living the life you want. That’s what people want.

ZOMORODI: Recognizing yourself as well.

VAN AMERONGEN: Yes, yes.

ZOMORODI: You’ve had people from all over the world come to see what you’re trying to do at The Hogeweyk. Has your model spread in some way?

VAN AMERONGEN: Well, the first one that started – and it’s wonderful – is in New Zealand. And it’s in Whare Aroha. I cannot pronounce it, like you can’t pronounce Hogeweyk. Whare Aroha – it’s a very touristical (ph) place. It’s known for the wonderful lake. And on the lake, on the shores of the lake, they have built this small dementia village. It’s wonderful. They’re working on it in Australia, in Canada. In France, theirs is based – already worked on it and have it – Italy, all kinds of places. It’s mainly Europe, Asia, Canada, United States.

ZOMORODI: I mean, you’re mentioning countries that have very strong social services.

VAN AMERONGEN: Yeah.

ZOMORODI: Health care is provided for all.

VAN AMERONGEN: Yeah.

ZOMORODI: The United States – I mean, I hear of helped living places, but those are some of the most expensive…

VAN AMERONGEN: Yeah.

ZOMORODI: …Places to stay. And my mother went to look at them, and she said, the wait list is five years long.

VAN AMERONGEN: Yeah, yeah. Well, that’s because the United States has a very different way of financing care. Old Dutch people that have an advanced dementia have the right to go into a nursing home, and it’s paid for. And you pay back to the state an amount according to your income. But it’s affordable for everybody in the whole Dutch nursing home system. But that’s politics. If it’s possible to have nursing home care in your country, you can work with it because most of what we’re doing is not spending more money. It’s about thinking differently.

(SOUNDBITE OF TED TALK)

VAN AMERONGEN: The Hogeweyk has become a place where people with very advanced dementia can live, have freedom and safety because the professionals working there and the volunteers working there know how to deal with dementia. And that means that the management has to provide everything those people need to do their work. It needs a management that dares to do this, to do things differently than what we always have done in the traditional nursing home. We see that it works.

We think this can be done everywhere because it has to do with thinking different and looking at that person in front of you and looking at what does this person need now. And it’s about a smile. It’s about how you act. And that costs nothing. And there’s something else. It’s about making choices. It’s about making choices what you spend your money on. I always say red curtains are as expensive as gray ones. It’s possible everywhere. Thank you.

(APPLAUSE)

ZOMORODI: That’s Yvonne van Amerongen. She’s a founder of The Hogeweyk and worked in dementia care for almost 40 years. She’s now retired herself. You can see her full talk at ted.com. On the show today, Take Care. I’m Manoush Zomorodi, and you’re listening to the TED Radio Hour from NPR. Stay with us.

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