Is it time to rethink how we care for dementia patients?
Is there a better way to care for dementia patients? And what might that look like?
“I think it really focuses on what’s the day-to-day life and looking at this balance between safety and freedom,” Dr. Tia Powell says.
And that’s exactly what the Netherlands did when they opened up the first-ever “dementia village” where residents can live freely despite their memory loss.
“Officially, it’s a nursing home, so we offer highly complex care, skilled nursing. But it does not look anything like a nursing home,” Iris Van Slooten says.
The village has its own restaurant, pub, theater, and even a supermarket.
Today, On Point: Dementia. Shifting the focus from cure to care.
Iris Van Slooten, advisor at Be Advice, an advisory board of the Vivium Care Group – a care provider in the Netherlands with multiple locations for people living with severe dementia.
Dr. Tia Powell, author of Dementia Reimagined: Building a Life of Joy and Dignity from Beginning to End. Professor of psychiatry and bioethics at Albert Einstein College of Medicine. (@tiapowell)
Meg Ounsworth Steere, whose mother was diagnosed with Alzheimer’s Disease in 2013.
Emily Roberts, associate professor of interior design at Oklahoma State University, who is working on a project to repurpose closed malls in the U.S. for dementia villages.
Interview highlights: Inside a ‘dementia village’ in Europe
On the idea behind a ‘dementia village’
Iris Van Slooten: “It should be about the individual; it should be about the person living in that place and need to deal with dementia. And you want to continue your life even though you are dealing with dementia. And so you want to continue life like you did before and not be hospitalized. I always ask our visitors and the people we work with, would you want to live in a hospital for the rest of your life? And then always the answer, of course, is no.
“So then why did we do that to the people that were living with us? And why are we doing this still today? So it’s about … you can continue with your life, you can stay a human being. And what makes you a human being, for instance, is that you can make your own choices every day. Like … what do I have on my sandwich? Or in what place do I want to be right now? Very, very simple choices we make every day but are taken away from people that live in a nursing home.”
On what the village looks like
Iris Van Slooten: “You will enter through a door and then you will enter the hallway. And that is a safe neighborhood where the outside of the homes are the barrier to the … broader surroundings. And we had a door because there were laws in place back when we designed … we had to keep people inside. But you will find 27 homes in a normal looking community. In normal neighborhood. The homes look like normal Dutch homes with a normal living room, a kitchen, private bedrooms. And when residents also step out of the front door, they are not on a walkway.
“They are really outside. And there are many streets and many gardens they can explore. We have a restaurant, a pub, a theater, many club rooms, a supermarket. So, everything you will find in any neighborhood, in any community. So yeah, very normal, and especially on a sunny day and in spring and summer, of course, then you see a lot of people walking around, having conversations, meeting each other, grabbing a chair, enjoying a drink in a restaurant. It’s just life.”
Who is working there? And do they have a special kind of training?
Iris Van Slooten: “Every resident that lives there has severe dementia. So, you need to have an indication from the Dutch government saying you have severe dementia, otherwise you cannot live in Hogeweyk or any other nursing home in the Netherlands. So, we offer highly complex care, skilled nursing.
“So, we have a staff, of course we have teams in the houses that support the household and really run the household. But we also have a quite extensive medical support team, including a specialist, elderly care, doctor, but also a psychiatrist, an official therapist, a social coach … nurses and they all support the teams in the houses. So we have most care on site.”
Say someone left their home, and they wanted to go to the village supermarket, but got lost or forgot the way. How do you help that person get to where they wanted to go?
Iris Van Slooten: “One thing we highly value in the Hogeweyk is having freedom and giving the freedom to these people and not restraining them. So autonomy … we do not work hand in hand with the residents 24/7. No, they are free to walk around on their own. A lot of people can find their way because also people with severe dementia, they still have learning abilities, and the place is designed [so that it is] recognizable for them. And everybody that’s working there is in a need to support residents.
“So also the staff in the restaurant, also the reception, also the technicians, also me when I’m there. … When I look out my office and I see somebody in the rain without a coat on, it might slip to the attention of a staff member in house. But then it’s also my job to go over there and find a jacket for that person. And well, in general, people will go to the supermarket together with staff.”
On helping people maintain their independence and humanity in the ‘dementia village’
Dr. Tia Powell: “It’s such a beautiful question. I think, you know, as a bioethicist, really all of our challenges can be summed up by the tension between maintaining freedom, which is part of what all human beings strive for and safety. And this argument’s been going on forever for hundreds of years. So I do think that many of the ways in which we provide care today in the U.S. for people with dementia do not focus on care, but they focus on other issues. You know, maintaining regulations, all kinds of other things. And we have forgotten about freedom and joy, which doesn’t have to be that way.”
Transcript: The reality of having dementia in America
MEGHNA CHAKRABARTI: Beth Ounsworth … was living a very rich life full of friends and music. As a member of her choir, she was independent in her own apartment in Philadelphia. And that started changing when Beth was about 69 years old. She began forgetting simple things like what day and time she had scheduled meetings, directions to common places. And she also began repeating the same thing over and over again.
And so her children finally took her to see a neurologist. And Beth was diagnosed with Alzheimer’s disease. Now, we spoke with her daughter, Meg Ounsworth Steere. Because Meg wanted to care for her mother, but with two young children at home, it just wasn’t possible. So they looked at assisted living centers near where Meg lived in Boston.
MEG OUNSWORTH STEERE: So she did go and visit a few assisted living centers with me. I thought I had her. And … we went to lunch and she just looked around and she was like, Not me, not now. And I was like, okay, you know? And that’s when we had this conversation about she was like, I don’t want to be in a place where I’m just surrounded by old people. I want to be in a place where there are, you know, babies, too, and young families, and I can feel a part of a community.
And I was like, Well, I can’t begrudge you that. That actually makes a lot of sense to me, too.
CHAKRABARTI: So Beth stayed in Philadelphia, but it wasn’t easy. Daughter Meg had to find full time aides to take Beth to all of her appointments and to help with all of her daily activities. Meanwhile, the disease progressed.
OUNSWORTH STEERE: It got to a point when I took her to the neurologist. He would give her a mini mental state exam and 30 is normal. My mom was testing at a four at that point.
Partially because she has aphasia and so she doesn’t really understand words. And so he was like, you know, she’s not going to answer the questions that were like, do you know who the president is? Do you know where we are right now? Do you know what time it is? Can you read the clock?
CHAKRABARTI: So the family decided it would be better for Beth to live in a memory care facility. And they found a good one near Boston. Beth moved in in 2018, and ever since then, Meg and the family have been paying about $100,000 out of pocket for the facility every year.
OUNSWORTH STEERE: What worries me is that I know I’m on the luckier side and it’s still not perfect. So I can’t quite fathom what it’s like when you have to go to a facility that can’t possibly retain the aid that they want. And so their numbers, their ratios must be off. They have to be. Or where aides are just less engaged and involved, they’re just kind of physically there.
Kind of like the first aides that I had, but not really assisting, you know, and engaging with and kind of trying to love the resident and then the people who can’t afford care at all. I just, I don’t know how that’s possible.
CHAKRABARTI: Meg visits her mother often. Beth is nonverbal now, However, Meg gets to communicate with her in a different way: by singing.
This article was originally published on WBUR.org.
Copyright 2023 NPR. To see more, visit https://www.npr.org.