The New Yorker Radio Hour: "A New Approach to Dementia Care"
Date: April 30, 2019
Host: David Remnick
Reporter: Larissa MacFarquhar
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.
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.”
- [08:44] Andrea Parrado shares how telling a patient her mother had died caused unnecessary grief, after which she switched to more comforting responses:
- 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?”
- [10:12] Andrea Parrado describes being reprimanded for giving coloring books to a resident, questioning,
- 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.”
- [17:40] When asked how she would want to be treated if she developed dementia, MacFarquhar responds:
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]
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
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.