A New Approach to Dementia Care

Summary

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The New Yorker Radio Hour: "A New Approach to Dementia Care"

Date: April 30, 2019
Host: David Remnick
Reporter: Larissa MacFarquhar

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Overview

This episode explores evolving philosophies and practices in dementia care, focusing particularly on The Lantern, an innovative memory-care facility in Chagrin Falls, Ohio. Through narrative storytelling, on-the-ground reporting, and candid conversations, the episode examines the emotional, ethical, and practical challenges faced by families, caregivers, and care staff as they work to preserve quality of life and dignity for people with dementia.

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Key Discussion Points & Insights

The Lantern: A New Model for Memory Care

• Immersive Design: The Lantern is designed to emulate a 1940s American small town, with realistic touches like porch-fronted rooms, skylights, and communal spaces that resemble parks and town squares.
  • [01:12] Larissa MacFarquhar: “The illusion was surprisingly effective. It... alleviated the claustrophobia that you usually feel in a hospital corridor.”
• Personalization: Residents are encouraged to personalize their spaces, enhancing the feeling of home and personal history.
  • [03:55] Example: Molly Gebler’s father, a former dentist, is allowed to display his old office sign outside his room.

The Philosophy of Care: Going Along vs. Correcting

• Redirection: Staff and families are trained to use “redirection”—gently supporting a resident’s beliefs or concerns rather than confronting or contradicting them.
  • [06:30] “You go along with it, you say, yeah, okay, we need to get your building back. What are we gonna do? And then hope that the distraction will take over...” — Larissa MacFarquhar
• Therapeutic Lying: “Lying” is reframed as “therapeutic lying” or “going with the flow,” aiming to minimize distress.
  • [07:47] Survey data: Nearly all caregivers and 70% of doctors admit to lying to patients with dementia.

The Ethical Dilemma of Lying

• Historic Norms: Older models (e.g., “reality orientation”) prioritized continuous correction and harsh honesty, often to distressing effect.
• Caregiver Testimony:
  • [08:44] Andrea Parrado shares how telling a patient her mother had died caused unnecessary grief, after which she switched to more comforting responses:

    “From now on, your mom went shopping, your mom had to go to the store... But it's never going to be, your mom has died. Never. I can't do that.”

• Conflict Between Honesty and Comfort:
  • [09:58] Balancing dignity, truth, and kindness: “With Alzheimer's... you have to respect them for where they are in the moment.” — Andrea Parrado

Rethinking Dignity

• Redefinition: Dignity is reframed not as adherence to adult norms but as meeting people where they are, cognitively and emotionally.
  • [10:12] Andrea Parrado describes being reprimanded for giving coloring books to a resident, questioning,

    “Why would it be considered undignified to give me a coloring book that is absolutely significant within my cognitive functional age?”

• The Limits of ‘Dignity’:
  • [11:27] Larissa MacFarquhar: “I started to kind of hate that word [dignity] because it felt like it was drawing attention to what was not dignified about their situation.”

Psychological Impact—On Residents and Caregivers

• The Consequences of Lying:
  • [13:05] MacFarquhar, paraphrasing philosopher Sissela Bok, warns that habitual lying can erode the caregiver’s own sense of truthfulness and the social trust of those around them.
  • Lying also poses risks if the resident unexpectedly becomes lucid or catches caregivers in a contradiction—potentially damaging trust.
• Case Example: Residents may notice inconsistencies, as when Mary suspects people are “gaslighting” her about her late husband and her home ([16:36]), leading not to comfort but deeper confusion and alienation.

The Unresolvable Tension: What Should Be Done?

• There is No Perfect Strategy:
  • [17:16] “There isn’t one strategy that works all the time.” — Larissa MacFarquhar
• The Unknown Future:
  • [17:40] When asked how she would want to be treated if she developed dementia, MacFarquhar responds:

    “I don’t know... 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.”

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Notable Quotes & Memorable Moments

• On Creating Familiarity and Comfort:

  “They want it to be their home. That's what their philosophy is all about, is just continuing to live their true life.”
  — Molly Gebler, [04:04]

• On Redirection vs. Confrontation:

  “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...”
  — Molly Gebler, [05:55]

• On Lying in Dementia Care:

  “I stopped right then and there and said, I'm never doing that again. I cannot put somebody through that ever again.”
  — Andrea Parrado, on telling a 90-year-old her mother had died, [09:14]

• On Dignity and Cognitive Age:

  “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.”
  — Andrea Parrado, [10:12]

• On the Limitations of Truth and Comfort:

  “It went around and around and around... I'm not sure she thought, ‘people here are lying to me.’ But she knew something was wrong... she just felt like somehow people are gaslighting me. Which we were.”
  — Larissa MacFarquhar, [16:36]

• On the Uncertainty of Future Self:

  “If I had dementia, I wouldn’t be the person I am now... 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.”
  — Larissa MacFarquhar, [17:40]

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Timestamps for Important Segments

• 01:10–02:20: Introduction to the Lantern and its design
• 03:20–04:26: Personalization and the story of Dr. Joe’s dental sign
• 06:30–07:31: Explanation and practice of “redirection” and “therapeutic lying”
• 08:01–08:44: Discussion of “reality orientation” and strict honesty
• 09:41–11:11: Redefining dignity in dementia care
• 13:05–13:49: The effect of habitual lying on caregivers and societal trust
• 15:05–16:47: When lying goes awry—residents feel gaslighted
• 17:40–18:18: The unknowable wishes of one’s future, demented self

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Conclusion

This episode thoughtfully navigates the evolving landscape of dementia care, exposing tensions between honesty and comfort, dignity and adaptation, and the struggles faced by both residents and caregivers. Through stories from The Lantern and the people connected to it, the program illustrates why there are no easy answers but highlights the profound importance of empathy, flexibility, and the ongoing reevaluation of what it means to provide humane care.

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Transcript

[Narrator/Producer]

From one World Trade center in Manhattan. This is the New Yorker Radio Hour, a co production of the New Yorker and WNYC studios.

[David Remnick]

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 rise. But the thinking about how to care for such patients is also starting to evolve. Staff writer Larissa McFarker 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.

[Larissa McFarker]

Okay, let's go for a walk.

[Resident or Patient]

Sure. Let's take a little walk.

[Larissa McFarker]

Should we hold hands?

[Resident or Patient]

Yeah. Okay.

[Larissa McFarker]

Vernon 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 mottled with a darker green that made it look a little bit like grass. And there was daylight coming in from skylights. 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. In a hospital corridor. It felt like somewhere nice to walk.

[Resident or Patient]

Would you like to meet my mom? My mom is nice.

[Larissa McFarker]

I would love to.

[Resident or Patient]

Please. Very easy with everybody.

[Larissa McFarker]

There were other residents walking, too, some of them with aides 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. That 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.

[Caregiver or Aide]

What does that say, Carmen?

[Resident or Patient]

It says horses.

[Caregiver or Aide]

Now you have to look on the table and find a horse.

[Resident or Patient]

I can't bring a horse. It's in my house. I can't bring a horse in my house.

[Caregiver or Aide]

Carmen, look. What's this?

[Resident or Patient]

It looks like one.

[Caregiver or Aide]

Yep.

[Resident or Patient]

I don't to want. Couldn't have a horse in my house. Pretty big.

[David Remnick]

Larissa.

[Interviewer or Commentator]

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 patients. 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 was it conceived? What's the idea here?

[Larissa McFarker]

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 the 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.

[Molly Gebler]

It's a big sign. It was his dental sign that was on his building.

[Larissa McFarker]

Molly Gebler's dad used to be a dentist, and everyone at the Lantern still calls him Dr. Joe.

[Molly Gebler]

And I had called the Lantern and said, hey, there's this dental sign. Is 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.

[Interviewer or Commentator]

Well, it's not their true life.

[David Remnick]

And in a sense, and I hate.

[Interviewer or Commentator]

To use this word, but were fooling them.

[Larissa McFarker]

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?

[Molly Gebler]

We really get into it a lot. 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.

[Larissa McFarker]

What would you say?

[Molly Gebler]

You know what I would say at the beginning? I would say, well, you can't anymore because 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 ready and they're not shaking, or I'm fine.

[Interviewer or Commentator]

I mean, my experience with my father and other relatives and even friends who have sunk into a state of dementia and as it got worse, was that they would fixate on an idea, and they could not be swayed from it.

[Larissa McFarker]

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.

[Molly Gebler]

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 steps 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.

[Larissa McFarker]

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 gonna do? And then hope that the distraction will take over before anything really confrontational starts.

[David Remnick]

So the idea is to engage the.

[Interviewer or Commentator]

Project somehow, but not really do anything about it.

[Larissa McFarker]

Exactly. And Andrea Parrado helps train the aides here in how to do that.

[Andrea Parrado]

So with my one client that struggles with her, with her money issues, every day she worries about where her money is and has 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.

[David Remnick]

Is that the status quo now in the care of dementia?

[Larissa McFarker]

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 in dementia wards say that they lie to patients.

[Resident or Patient]

And.

[Larissa McFarker]

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.

[David Remnick]

What's the alternative, then, constantly correcting people?

[Larissa McFarker]

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 real 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 Andrea said she, she worked in a place like that when she first started in this, in dementia care. And she really tried to stick to the honesty rule.

[Andrea Parrado]

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 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. I.

[Resident or Patient]

You.

[Larissa McFarker]

Nope.

[Andrea Parrado]

I cannot put somebody through that ever again.

[Resident or Patient]

Yeah.

[Andrea Parrado]

From now on, your mom went shopping, your mom, 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, I know that some people find that it's wrong to lie to somebody there. 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.

[Interviewer or Commentator]

It seems like a horrifying way to make a living, to be a caregiver and have to cause people to grieve all over again.

[Larissa McFarker]

Oh, it's miserable. I mean, we're talking all day, every day and you know, it's even more complicated because of their memory loss. Someone can be miserable and not even know why.

[Interviewer or Commentator]

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?

[Larissa McFarker]

Yeah. So I asked Andrea about that.

[Andrea Parrado]

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 ask 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 4 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. And does that make sense?

[Larissa McFarker]

Absolutely. So it does make sense, what she's saying. She's really redefining dignity.

[David Remnick]

Right.

[Interviewer or Commentator]

She's defining it in terms of meeting people where they are in a moment in time, in their capabilities.

[Larissa McFarker]

Exactly.

[David Remnick]

Does that seem right to you?

[Larissa McFarker]

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.

[Interviewer or Commentator]

Like what?

[Larissa McFarker]

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 Gebler, for instance? She stopped fighting with her father about whether he could practice dentistry again, and things got easier. And. 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.

[Molly Gebler]

So one time he called me, he 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 or, you know, I mean, and I can't be running here every second, right? So the next day he called again and he said, you know, are you going to come over? And I said, yes, I will. He said, oh, like what you told me yesterday?

[Larissa McFarker]

Oh, God.

[David Remnick]

Well, it's one thing to learn to.

[Interviewer or Commentator]

Lie to someone you care about, but to get caught doing it.

[Larissa McFarker]

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. But I talked to this philosopher, Sisala 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.

[Interviewer or Commentator]

You think this is going to bleed into the rest of your life and your dealings with people who don't have dementia.

[Larissa McFarker]

Somehow, once you tell yourself lying is 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, and everyone in the doctor's office, including, let's say, your small child sitting next to you, sees you 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.

[Resident or Patient]

Well, my husband is in the hospital this morning, and I want to see him, and nobody should take me.

[Larissa McFarker]

Mary's husband died years ago, but she didn't remember.

[Caregiver or Aide]

What if we go pray for him? What if we go pray for him? Would that help?

[Resident or Patient]

But I gotta see him.

[Caregiver or Aide]

Well, we can do that after we say a little prayer. Okay?

[Resident or Patient]

Just take me home. Okay.

[Larissa McFarker]

And when no one would take her to see him in the hospital, she started asking to go home.

[Resident or Patient]

I only. I. I only live about 2. Two blocks from here.

[Narrator/Producer]

Tell, what's the.

[Larissa McFarker]

What is the.

[Caregiver or Aide]

The house look like?

[Larissa McFarker]

What does the house look like?

[Resident or Patient]

Well, it looks like a cute, cute house. Yeah, it's a nice house.

[Caregiver or Aide]

Do you have a garden there?

[Resident or Patient]

I have a garden, yeah.

[Caregiver or Aide]

Do you grow vegetables or flowers?

[Resident or Patient]

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, away from here.

[Larissa McFarker]

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.

[Caregiver or Aide]

We're gonna have to wait a little bit, okay, until I get my car fixed. And I'll take you.

[Resident or Patient]

You'll take me then?

[Caregiver or Aide]

Yeah. Once my car gets fixed by the fixer, we're gonna go.

[Resident or Patient]

Okay?

[Caregiver or Aide]

But you have to be calm.

[Resident or Patient]

Nobody can take me, huh? No.

[Caregiver or Aide]

Everyone's car is messed up.

[Larissa McFarker]

Mary asked me to.

[Resident or Patient]

Can you do it for me?

[Larissa McFarker]

I don't have a car here.

[Caregiver or Aide]

They got here on the bus. The bus? In a cab. They got here on the cab and a bus. So no one have a car. We all here, and we don't have a car.

[Resident or Patient]

Okay.

[Larissa McFarker]

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 wrong.

[Interviewer or Commentator]

She was disoriented by what they were telling her.

[Larissa McFarker]

She knows it can't be true that everyone's car is broken. And she just felt like somehow people are gaslighting me.

[Interviewer or Commentator]

Which you were.

[Larissa McFarker]

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?

[Interviewer or Commentator]

So what do you do? You break the rule of. Of lying to her in a useful way.

[Larissa McFarker]

You know, there isn't one strategy that works all the time.

[Interviewer or Commentator]

So 30, 40 years from now, and that's being extremely generous. Could be a lot sooner. Larissa, you could be in this situation. I could be in this 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?

[Larissa McFarker]

I don't know. I just do not know, because the whole thing is that I would. 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 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.

[David Remnick]

That's Larissa McFarker, a staff writer at the New Yorker, and you can find a terrific piece that she wrote about this [e-mail].

[Resident or Patient]

David.

[David Remnick]

I'm David Remnick, and that's the New Yorker Radio Hour for today. Thanks for listening.

[Narrator/Producer]

The New Yorker Radio Hour is a co production of WNYC Studios and the New Yorker. Our theme music was composed and performed by Meryl Garbus of Toon Yards, with additional music by Alexis Quadrado. Our team includes Alex Barron, Emily Bottin, Ave Carrillo, Rhiannon Corby, Jill Duboff, Karen Frillman, Kalalea, David Krasnow, Louis Mitchell, Sarah Nix and Steven Valentino, with help from Emily Mann and Jessica Henderson. The New Yorker Radio Hour is supported in part by the Cherina Endowment Fund.