
Photo: Alex Halada/AFP via Getty Images.
Elderly spectators arrive to attend a concert specifically tailored to people living with dementia at the Wiener Musikverein in Vienna on December 5, 2022.
Meghna Chakrabarti of WBUR’s On Point had a great show recently about enlightened dementia communities in the Netherlands and other parts of Europe.
I came away feeling that the reason we have little like this in the US is because of insurance. We are such a crazily litigious society, we can’t afford to take the slightest risk, even if it means an older person will have a happier aging experience.
Producer Paige Sutherland and host Meghna Chakrabarti shared highlights from the show at the WBUR website.
“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 [professor of psychiatry and bioethics at Albert Einstein College of Medicine] 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,’ [advisor at Be Advice] Iris Van Slooten says. …
“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? … 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 a 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 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. …
“Every resident that lives there has severe dementia. So, you need to have an indication from the Dutch government saying you have severe dementia. … 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. …
“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. … 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. …
“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. …
“On helping people maintain their independence and humanity in the ‘dementia village’
“Dr. Tia Powell: [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.”
A bit from the transcript on the sad US situation.
“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 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. … 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. …
“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? …
“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 aides that they want. … 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.”
If you click on the arrow at WBUR, here, you can listen to the whole show. PS. I blogged about the Dutch dementia village in 2016, here!