The New Yorker Radio Hour - A New Approach to Dementia Care

Episode Date: April 30, 2019

In the field of memory care, there is a fierce debate around the question of honesty. Lying can, under certain circumstances, alleviate or avert distress in patients who are suffering from memory loss. But, on principle, many providers, patients, and family members don’t like the idea of deceiving patients who are in such a vulnerable position. Some care homes have strict no-lying policies. But the New Yorker staff writer Larissa McFarquhar recently spent some time at a different kind of assisted-living facility that takes the opposite approach—The facility is one of only a few of its kind in the United States." The Lantern, in Chagrin Falls, Ohio, is home to about forty patients who suffer from dementia and Alzheimer’s disease. The care staff at the Lantern are taught that, in some cases, lying to patients is kinder than telling them the truth. McFarquhar talks with Andrea Paratto, who helps train the Lantern’s staff. In a previous job, at a facility where lying to patients was against the rules, she had to remind a ninety-year-old woman that her mother was long dead. “She just started crying,” she tells McFarquhar. “I stopped right then and there and said I’m never doing that again. I cannot put somebody through that ever again.” Some people argue that lying to patients undermines their dignity. But when it comes to patients struggling with dementia, McFarquhar says, there are other factors to consider. “Maybe something else should be the goal—I don’t know. Happiness? Autonomy? Or living your life as you want to, insofar as that’s possible.” New Yorker Radio Hour listeners, we want to hear from you.  We have a few questions about the show and how you listen to it. The survey takes about twenty minutes, and your feedback will help us make our podcast better.  Take the survey here.

From One World Trade Center in Manhattan, this is the New Yorker Radio Hour, a co-production of the New Yorker and WNYC Studios. This is the New Yorker Radio Hour. I'm David Remnick. If you've had any experience caring for a family member or a loved one who's losing their memory, you don't need me to tell you just how painful it can be for everybody involved. That experience is going to become more and more familiar as the number of people living with Alzheimer's disease in this country continues to run. rise. But the thinking about how to care for such patients is also starting to evolve. Staff writer Larissa McFarcker recently spent some time at a new kind of assisted living facility for memory care patients, one of only a few like it in the United States. The place is called the Lantern, located in the Cleveland suburb of Chagrin Falls, Ohio. It houses around 40 residents who have some form of dementia or Alzheimer's.

Okay, let's go for a walk. Let's take a little walk. Should we hold hands? Yeah. Okay. Bern and I were walking down a wide hallway, and it had been designed to look like a street in a small American town of maybe 75 years ago.

The floor was covered in carpeting, kind of green modeled with a darker green that made it look a little bit like grass, and there was daylight coming in from skylight. And then between the skylights, there were light panels that were painted to look like sky. The illusion was surprisingly effective. It didn't fool you exactly. You didn't feel as though you were actually outdoors.

But it alleviated the claustrophobia that you usually feel in a hospital corridor. Or it felt like somewhere nice to walk. Would you like to meet my mom? My mom is a nice person. I would love to. Very peace, very easy with everybody. There were other residents walking to, some of them, with AIDS, and some of them just by themselves, going for a stroll. In the middle of the unit, there was an open space that was, again, designed to look like a kind of small park or a town square.

There was a fountain, a few benches, and there were a few people gathered around some tables sitting on chairs, playing a game with some AIDS. What does that say, Carmen? It says horses. Now you have to look on the table and find a horse. I can't bring a horse. It's in my house. I can't bring a horse in my house. Carmen, look.

What's this? It looks like one. Yeah. I don't want a horse. Couldn't have a horse in my house. Larissa, I used to go visit my grandmother at a, what I guess you call a unit. And there were people screaming. There were TVs blasting, which may or may not have been upsetting to the patient.

It was hard to gather people were so far gone in some ways, but it certainly was upsetting to me. How different is this, and how is it conceived? What's the idea here? The idea is that people who live there should not feel like they live in a hospital. The idea is that they live in something that feels as much as possible like an ordinary town. And, you know, people find themselves saying things like, oh, where's your house? It's at the other end of the street. So each room for their resident had a front porch and people could decorate them however they wanted to.

The staff are extremely open to accommodating personal touches on the part of the residents to make them feel at home. There's one house outside which there's a large dentist's office sign. It's a big sign. It was his dental sign that was on his building. Molly Gepler's dad used to be a dentist and everyone at the lantern still calls him Dr. Joe. And I had called the lantern and said, hey, there's this dental sign. It's there any way we can put it next to his house. And there wasn't even, they didn't look at the sign.

They didn't see the sign. It was a yes, absolutely. Because they support that. They want it to be their home. That's what their philosophy is all about, is just continuing to live their true life. Well, it's not their true life. And in a sense, and I hate to use this word, but we're fooling them. Well, yes. You know, Molly told me that he used to spend a lot of time asking her why he wasn't still practicing. Where was his office?

We really get into it a lot. You used to get into it a lot. We had sold the office and he was mad about that. And every day, that would be the conversation. He'd get angry about it. What would you say? You know what? I would, at the beginning, I would say, well, you can't anymore. You're not doing well. You're not fit to do it. Yes, I am. And I'm working. I get up every morning and I exercise and look at my hands. These hands are, you know, they're ready and they're not shaking or I'm fine. I mean, my experience with my father and other relatives and even friends who have sunk into a state of dementia as it got worse is that they would, they would fixate on an idea and they could not be swayed from it. Yeah, Molly says in the early days of her father's sickness, they fought all the time. And so she went to one of the professionals at the lantern and asked her advice.

So I went to her in tears, and I remember her saying you can't argue with them. Like you're not going to get to a resolve. You have to readjust. and find out what it is that he's trying to say, finding out what the conversation is, and then redirecting it. Or saying, okay, so if you were, what do we need to do? What are the stuff we need to do to get you back to dentistry? And then go through those steps with him.

And then he'll probably go off to something else. So this is what people call redirection. You know, you go along with it. You say, yeah, okay, we need to get your building back. what are we going to do? And then hope that the distraction will take over before anything really confrontational. So the idea is to engage the project somehow, but not really do anything about it. Exactly.

And Andrew Perado helps train the aides here and how to do that. So with my one client that struggles with her money issues every day, she worries about where her money is. and as somebody sold her house and, you know, where's all her stuff? And why can't she just go to the bank? And for her, she just needs a lot of reassurance and a lot of, you know what, let me look into that. Let me see what I can do. Let me see if I can find those resources for you. Let me see if I can get in touch with a lawyer for you.

You know, I may not do that because obviously she has a guardian and the lawyers have already deemed her unable to care for herself. Is that the status quo now in the care of dementia? Well, it's often not official, but in fact, seems to happen pretty much everywhere. There was a survey not long ago that found that almost 100% of care staff and dementia wards say that they lie to patients. And something like 70% of doctors say they do too. But it's still a very fierce debate because people don't like the idea of lying to patients. They don't call it lying. They call it therapeutic lying.

They call it going with the flow. There's lots of euphemisms. What's the alternative then, constantly correcting people? Well, you know, that did used to be the norm in dementia care. And some places took it even further. There was a protocol called reality orientation where the idea was that if you constantly drilled people with dementia in facts about everyday life, they might regain a grasp on reality. So things like, you know, the day of the week, the month of the year, who the president is, what the weather is, that kind of stuff. And that kind of drilling doesn't happen much anymore. But a lot of care homes still have. strict no lying policies. And Andrew said she worked in a place like that when she first started in dementia care. And she really tried to stick to the honesty rule. I tried it, Larissa. I can't even lie. And I felt so guilty because I told this 90-year-old woman that I'm sorry, you know, you're 90 and your mom has passed away. And she just started crying. She just started

crying. And she had a grieve all over. And from that moment, moment on after I sat there and cried and held her and comforted her, I stopped right then and there and said, I'm never doing that again. You, you, I, you, I, you, nope, I cannot put somebody through that ever again. Yeah. From now on, your mom went shopping. Your mom had to go to the store. I don't know, but it's never going to be your mom has died. Never. I can't do that. I know that some people find that it's wrong to lie to somebody. I mean, it's a 90-year-old human being and she has the right to have the truth told to her, I get that. But when you're in the moment, you'll change your mind. It seems like a horrifying way to make a living, to be a caregiver

and have to cause people to grieve all over again. Oh, it's miserable. I mean, we're talking all day, every day. And, you know, it's even more complicated because because of their memory loss, someone can be miserable and not even know why. And one of the things that we are constantly talking about on these subjects is the notion of dignity. So how do dignity and lying come into conflict or coexist? Yeah, so I asked Andrea about that. Dignity is being respectful, I guess, of people's needs, of who they are. And with Alzheimer's disease, you have to respect them for where they are in the moment. I got in trouble at a nursing home once because I had a client asked me if I could get her some Walt Disney coloring books. I got in trouble because it was undignified for me to give her little kid coloring books.

So my question then would be if I am at a stage five of the disease, okay, and my cognitive functional ability is at the age of a four to 10 to 12 year old, why would it be considered undignified to give me a coloring book that is absolutely significant within my cognitive functional age. Dignity is about respecting a person for the person that they are and who they are and what their needs are. Does that make sense? Absolutely. So it does make sense what she's saying. She's really redefining dignity. Right. She's defining it in terms of meeting people where they are in a moment in time and their capabilities. Exactly. Does that seem right to you? You know, honestly, when I, in the process of working on this story, people talked about dignity all the time. And I started to kind of hate that word because it felt like it was drawing attention to what was not dignified about their situation. You know, maybe we should just be using a different word. Like what?

Well, if you keep talking about dignity and that's preventing you from giving someone a coloring book, maybe something else should be the goal. Like, I don't know, happiness or autonomy or doing, living your life as you want to insofar as that's possible. But even leaving the word dignity aside, you know, it can sound when you talk to people who work in these units that lying is the answer, that it solves these problems. But in fact, lying itself brings problems of its own. So, okay, remember Molly Gabler, for instance, she stopped fighting with her father about whether he could practice dentistry again and things got easier. But things are unpredictable with memory and somebody may remember nothing in the morning and then in the afternoon suddenly they're sharp again. and this brings up its own problems. So one time he called me, it was upset about something, and I said, well, okay, I will come by.

And I didn't, because usually it's because he wasn't in his right seat for breakfast. And I can't be running here every second. So the next day he called again, and he said, you know, are you going to come over? And I said, yes, they will. He said, oh, like what you told me yesterday. Oh, God. Well, it's one thing to learn to lie to someone you care about, but to get caught doing it. Well, this is exactly the problem because when you're taking care of someone with dementia, it can seem like the only thing that matters is their happiness and getting through the next moment if you're right in the middle of it.

But, you know, I talked to this philosopher, Cicilla Bach, who wrote a book about lying. And she drew my attention to exactly what you pointed to, which is the person. with dementia is not the only person that matters. There's also you, the one who's doing the lying. What effect does that have on you? You get into the habit of lying every day, every day, every day, to the person with dementia. And you tell yourself, well, that's for them. That's to make them happy. But as we all know, you can make all kinds of people happy by lying. So where do you draw the line? Sooner or later, you might find yourself lying a lot. You think this is going to bleed into the rest of your life and your dealings with people who don't have dementia somehow? Once you tell yourself, lying

okay if it makes someone happy, you're opening a very wide door. And furthermore, there's the effect on other people who are around you. So suppose you're at a doctor's office with your parent with dementia. Everyone in the doctor's office, including, let's say, your small child sitting next to you, sees you're lying your head off to your parent, obviously. Well, that contributes to a general sense that lying is okay, lying is kind, and that can have the potential to do something very, very dangerous, which is undermine our general sense that people usually tell the truth, a kind of social trust that is really precious and really fragile. And, you know, another time I saw this play out in The Lantern, we were sitting around a table with a few residents,

and one woman named Mary was not paying attention because she was worrying about her husband. Well, my husband is in the hospital. since this morning. And I want to see him. And nobody's to take me. Mary's husband died years ago. But she didn't remember. What if we go pray for him?

What if we go pray for him? Would that help? But I got to see him. Well, we can do that after we say a little prayer, okay? Just take me home, okay? And when no one would take her to see him in the hospital, she started asking to go home. Your house is right here.

I only live above. Two blocks from here. Tell what does the house look like? What does the house look like? Well, it looks like a cute house. Yeah, it's a nice house. Do you have a garden there? I have a garden, yeah.

Do you grow vegetables or flowers? Both, but I have to take care of it. But now there's nobody there. So please somebody take me home. It's only two blocks. away from here. And she asked one person after another. She asked all the aides around the table. One person said she was out of gas. Somebody else said their car was in the shop. We're going to have to wait a little bit, okay, until I get my car fix, and I'll take you.

You'll take me then? Yeah. Once my car gets fixed by the fixer, we're going to go. Okay. But you have to be calm. Nobody could take me, huh? No, everyone's car is messed up. Mary asked me, too. Can you do it for me? I don't have a car here. She got here on the bus. The bus and the cab.

They got here on a cab and a bus. So no one have a car. We all here, and we don't have a car. Gee. It went around and around and around. This went on for like 15 minutes. And she, I'm not sure she thought, had the thought, people here are lying to me,

but she knew something was off. She was disoriented by what they were telling her. She knows. It can't be true that everyone's car is broken. And she just felt like somehow people are gaslighting me. Which you were. Which we were.

And did that make her feel better? No. Now she's surrounded by people who are not only strangers to her, but she doesn't think that they're telling her the truth. I mean, was it the better choice other than telling her her husband was long dead? I'm not sure. So what do you do? You break the rule of lying to her in a useful way? You know, there isn't one strategy that works all the time.

So 30, 40 years or now, and that's being extremely. generous could be a lot sooner, Larissa. You could be in this situation. I could be in the situation. Your daughters will be in middle age, my sons and my daughter. And after all, this time spent with people with dementia, how do you want to be treated? I don't know. I just do not know. Because the whole thing is that if I had dementia, I wouldn't be the person I am now. You know, if I tried to make a decision for my future self now, you know, I'd be all worried about my. my dignity and people lying to me and how humiliating that might be. But future me might just want to sit at a table and just get on with coloring something in a coloring book and be lied to.

So I don't know. That's Larissa McFarker, a staff writer at The New Yorker. And you can find a terrific piece that she wrote about this subject at new yorker.com. I'm David Remnick, and that's the New Yorker Radio Hour for today. Thanks for listening. The New Yorker Radio Hour is a co-production of WNYC. studios and The New Yorker. Our theme music was composed and performed by Merrill Garbus of Tune Yards with additional music by Alexis Quadrado.

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