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Caregivers grapple with idea of lying to dementia patients

Locals with first-hand experience offer insight into weighty issue

Barton Bernstein spends time with his wife in her room at the memory care unit at Sunrise Senior Living on Jan. 24, 2019. Photo by Veronica Weber.

Should you lie to a person with dementia?

It's become a common question in the world of caregiving, where lies might be less upsetting than the truth for those with dementia — despite longheld concerns about the ethics of encouraging delusions.

"Therapeutic fibbing," "brief reassurances" or telling "white lies" has gained noticeable attention in recent months ever since journalist Larissa MacFarquhar's article in the October issue of the New Yorker magazine revealed how a growing number of nursing homes are creating nostalgic, small-town environments — lobbies designed to look like a town square, halls with lampposts and street signs, rooms decked out with front-porch facades and rocking chairs — as a means of soothing the panic and rage residents with dementia often experience. These illusions, she reported, have proved successful in many situations, challenging decades-old policies and practices aimed at truth-telling at all costs.

For Winston Chiong, a behavioral neurologist specializing in dementia care and research at the University of California, San Francisco, with a particular interest and focus on ethics, there isn't a one-size-fits-all answer.

"In my clinical experience, I've found that the right approach really depends a lot on the particular family. I have some who tell me that they cannot bring themselves to lie because the truth, even if about something painful, is too important to them. ... I do think there are some cases in which the impulse to tell the truth needs to be scrutinized," said Chiong, who will debate this topic with two other experts on Thursday, Feb. 7, during a public panel discussion moderated by MacFarquhar and sponsored by Stanford Center for Biomedical Ethics and Stanford's McCoy Family Center for Ethics in Society.

"I don't think it's possible to be honest 100 percent of the time. Sometimes telling a lie is the only practical option," said Marina Martin, who also will be a panelist at the event. Martin operates a clinical practice focused on post-acute rehabilitation and long-term care at the Palo Alto nursing home Webster House Health Center.

"I have a pretty pragmatic view of how to communicate with people with dementia — in general, I prioritize comforting the person, addressing their underlying emotion rather than the accuracy of the content," Martin said.

She tells her patients' caregivers that it's okay to use "fiblets" when absolutely needed to avoid danger or significant distress.

"If the person insists on driving, and it isn't safe to do so, I might recommend hiding the keys or disabling the car in some way," she explained. "I've even recommended having cars removed and saying the car is out being repaired."

While the idea of being deceptive is gut-wrenching for some, over time, these views can change.

The Palo Alto Weekly interviewed five local residents caring for loved ones with dementia. They spoke about their struggles and experiences with lying, shedding light on the topic. Here are some of their stories:

Barton Bernstein

"At every stage, the aim is comfort, not candor," said Barton Bernstein of Palo Alto, who for the past two-and-a-half years has been caring for his wife, who now has advanced dementia. "Candor is self-indulgent and is a false standard because it is disruptive and hurtful."

Bernstein, an emeritus professor of history at Stanford University, cared for his 79-year-old wife at home until recently, when a fall required her to be moved to the Palo Alto care facility Sunrise. Bernstein, 82, bicycles there twice daily to accompany her through lunch, dinner and bedtime.

"Occasionally she'll say, 'I want to go home.' And I'll say, as I wheel her into the room, 'Oh, now we're home.' She'll look at me and smile, I'll kiss her and she'll go to sleep," Bernstein said.

"If I were to say, 'No, home is on Seale; you're in an assisted living place for memory,' what the hell would I be accomplishing?"

Before she became ill, Bernstein and his wife had many occasions to discuss the problem of lying to people with dementia because they had seen her mother through years of Alzheimer's disease before she died in the early 1990s.

"She found it very difficult over time to lie to her mother because her father had never lied, and it was a unique value in their home," Bernstein recalled. "We talked about it at least 100 times." Given the family history, the two also discussed the possibility that she could get Alzheimer's and what her preferences would be. "What we hit upon, roughly, was that in the early stages, when there's still a lot of understanding, you try to be reasonably truthful but, as understanding lapses, moving to comfort, and she reluctantly agreed," Bernstein said.

"After the early stages, people (with dementia) are deeply confused, deeply anxious, and candor is destructive," he said. "The thing you have to do as a loving caregiver is be attentive to the emotions of the other person, and maximize their emotional welfare."

• Hear more of Bernstein's story and his thoughts on "compassionate deception" in this webcast video

Margaret Deanesly

Some years into her husband's decline with dementia, Margaret Deanesly awoke in the middle of the night to find him standing by the bed — fully dressed with coat and tie — explaining that he was waiting for the police to come take him for a driving test.

"I had to coax him back to bed fully dressed by telling him it was cold outside and cold in the bedroom and that he might as well stay warm until the police came," said Deanesly, whose husband of 54 years died in November 2017 after a decade of decline.

"That was a fib, but it got him back under the covers. Everybody has versions of this."

Deanesly, a retired physician, said she was in denial over the early signs of her husband's impairment. "I wanted him to be as I'd previously known him, and the denial hangs on because you want it to be different. You want the person you've always had.

"But managing these people is like managing a fully functional adult who's now becoming 5 years old, 4, 3, 2, 1 and a diapered newborn. They're backing down through the stages.

"You've got someone who gets up and gets dressed. You can still embrace them, buy them a lovely sweater. They're still your intimate partner, but slowly you get to a point where their functioning is inappropriate."

On many occasions, her husband didn't recognize her, Deanesly said. "The worst thing I could do was to tell him I was Margaret because he would say, 'No, you're not; you're telling me a lie.'"

One time he pointed to his wedding ring and insisted he had to go to Boston to find Margaret because she was his wife and he had to take care of her. Deanesly played along, settling him into the car and letting him direct her to the airport. "It may have been 30 minutes or an hour that we drove around, up and down the freeway," she said. "Eventually we'd be driving down the street we lived on and he'd say, 'This is it,' and would point to our driveway. We'd go into the house, I'd give him an oatmeal cookie and we'd start the bedtime routine, which is like putting a baby to bed, but he weighed 189 pounds."

Managing an adult who's become like a young child requires "kindness lying," Deanesly said. "It isn't lying, it's fibbing — you're dealing with a 2-year-old or a 3-year-old."

Jean

A person cannot have rigid rules to follow about lying to a person with dementia, said Jean, who asked that her full name not be used to protect the image of her husband, a longtime Stanford professor who died in 2017 after some years with Alzheimer's.

Jean said the deceptions she had to practice during her husband's illness "bothered me the whole way through." But she learned that persisting in telling him the truth could increase his agitation.

One night around 3 a.m., her husband gathered some random objects into the living room and announced, "I will not spend another night in this house — we're going to the other house." (There was no other house.) Jean suggested they wait until daylight, and he responded that if she wouldn't drive him there right then, he would walk.

"I said, 'You don't know where it is — it only exists in your mind.' Of course that was the truth, but it didn't help." Eventually, they both were exhausted and went to bed.

Over time, Jean learned to adapt her language to "respond to the moment." For example, her husband would say he didn't want to go to his day program. She'd agree that he didn't have to go, but would make sure to have him dressed, ready and seated in the living room. Then when the transport driver came to pick him up she would say, "'Oh, there's Joe.' And he'd get right up, put his coat on and go. This happened over and over."

It is "selfish" for a caregiver to adhere to "some rigid, ethical principle" of not lying, Jean said. As a caregiver, she felt a greater obligation to create a world that was "comprehensible and adequate" for her husband.

Martha Chan

After being diagnosed with early Alzheimer's at age 58, Martha Chan's husband, Wah Ho, gradually had to give up working, then driving. He reluctantly agreed to attend a day program in Mountain View, which enabled Martha, for a time, to continue her work as a marriage and family therapist.

The only lie she recalls ever telling her husband, Chan said, was when it became necessary to move him from home to a residential care facility. "I was pretty sure he would not be willing to go there," she said.

Ahead of time, Chan moved her husband's favorite chair, some clothing and a painting by a friend to the new place. When it was time for him to go, she loaded him into the car as if they were going to his regular day program. He failed to notice she was driving in the wrong direction, but did notice when they arrived at a different place.

"I said, 'You haven't been happy going to (the Mountain View day program) lately, so this is a different place for you to try out,'" Chan said.

In hindsight, Chan regrets that she followed the care home's advice not to visit during the initial week because her husband had difficulty adjusting, refusing to eat and sleep. But after the initial period, she visited regularly and he came to accept the new situation. Wah Ho Chan died this past October at age 68."

"I don't recall lying directly to Wah Ho, except in (that one instance)," Chan said. "My untruths to him were in the category that my religious tradition calls 'sins of omission.'

"About five or six years ago, I told Wah Ho that one of his aunts had died. He somehow thought it was his mother who had died, was devastated and wept. I explained the confusion and comforted him as well as I could, but after that I was careful what information I shared with him.

"He was happy to hear that a cousin had a new baby; he didn't need to know about illness or death in the family. That was a decision that I made as his spouse and caregiver, with agreement and support from our daughters," Chan said.

David Van Horn

David Van Horn believes he's promoting the independence of his father — whom he visits daily in the Sunrise assisted living facility — by avoiding uncomfortable truths.

"I'm enriching his life by not burdening him with things that would weigh him down," Van Horn said. "He's a worrywart, and I don't want him worrying about (an out-of-town grandson having difficulties) when he could be looking for the next great book he wants to read."

In addition to avoiding talk of any family troubles, Van Horn recently hired a 24-hour, one-to-one caregiver for his father, who has lived at Sunrise since 2015. "A lot of people would say, 'Why are you taking your father's independence from him and making him dependent on a caregiver?' But my dad just needs that assistance, and that's actually promoting his independence," Van Horn said.

If his father asks for a Coke, Van Horn will tell him the dining room is out of Coke. "I'll grab a bottle of off-brand Ensure and he'll say, 'OK, I'll just take a sip or two' and he'll keep drinking it," Van Horn said. "I have no problem telling him there's no Coke — none at all — because I've been watching his calories and he needs the protein, calorie intake and carbohydrates."

Minimizing any kind of worry for his father, Van Horn believes, is a kindness because it improves his quality of life.

Dementia care: Experts debate the ethics of truth-telling vs deception

Should you be honest to a person with dementia about painful truths — their parents are dead, they will never leave this nursing home — or should you lie to keep them happy? Is there anything wrong with "benevolent" lies? If you had dementia, how would you want to be treated?

Two physicians and a philosopher will debate "Should You Lie to a Person With Dementia?" during a free public panel discussion, sponsored by Stanford Center for Biomedical Ethics and Stanford's McCoy Family Center for Ethics in Society, from 7 to 8:30 p.m., Thursday, Feb. 7, at Cubberley Auditorium, 485 Lasuen Mall, Stanford.

Journalist Larissa MacFarquhar — author of The New Yorker article "The Comforting Fictions of Dementia Care," which examines diverse opinions about when lying is the right thing to do and when is it wrong — will moderate the event.

Guest panelists include San Francisco neurologist Winston Chiong, who treats people with Alzheimer's, frontotemporal dementia and other cognitive disorders of aging; University of California, Riverside, philosophy professor Agnieszka Jaworska, who previously taught courses on ethical theory, moral psychology and medical ethics at Stanford University; and physician Marina Martin, a clinical assistant professor at Stanford, who works with post-acute rehabilitation and long-term care patients at Webster House Health Center.

More information is posted at ethicsinsociety.stanford.edu/events.

Weekly journalists discuss this issue with caregiver Bart Bernstein on an episode of "Behind the Headlines."

• Watch the webcast video

• Listen to or download the podcast.

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Comments

26 people like this
Posted by steven
a resident of another community
on Feb 1, 2019 at 8:41 am

One thing to keep in mind...dementia is a 'symptom' while Alzheimer's is a 'disease'. In other words, it is like a fever in comparison to a specific infection, cold or virus etc.

Dementia also has 'gray zones'...from mild cognitive impairment to the extreme changes we often associate with advanced cases of Alzheimer's Disease.

People with milder cases of dementia can lead ordinary lives with some occasional reminding as their short-term memory/recall tends to fade from time to time. One the other hand, those totally disoriented with their surroundings should probably be in an assisted-care facility for their safety.

Those who recall the old 'Bewitched' TV show will remember 'Aunt Clarisa'. Though a comedic character, she had mild dementia & was able to carry on with her everyday life despite being a bit forgetful at times.

Having visited an elder relative at a memory-care/assisted living facility, I have noticed that the attendants often treat the residents like 4 year-olds to reassure them during times of anxiety & it is a bit demeaning. Of course this approach should depend on the level of dementia.

A problem that frequently occurs & I am experiencing this in my family...is when greedy siblings armed with a mild dementia diagnosis, confine an elderly parent to one of these memory care facilities in order to seize control of the family trust assets. It is easily accomplished with a shifty probate attorney who petitions for a conservatorship of person and estate.

As a result, an elder can easily lose all of their civil rights and is now confined to a 'perimeter secured' facility where they are forced to spend their remaining years. It is a form of legalized elder abuse which allows a Conservator/Trustee/Beneficiary (usually an avaricious offspring) to steal their inheritance prior to a parent's passing by controlling the trust assets.

This legal proceeding once accomplished is very difficult to undo and very expensive as it involves additional attorney/court time and those lawyer 'billable hours' can easily rack up.

So in getting back to 'lies'...it really depends on the level of impairment. If one is totally disoriented, perhaps there's some value in it. On the other hand, if the impairment is mild, then lying is outright immoral, unethical and oftentimes illegal...especially if it involves fiduciary matters.






1 person likes this
Posted by timetrip
a resident of another community
on Feb 1, 2019 at 11:51 am

a fascinating topic; the event should provide an abundance of interesting information.


6 people like this
Posted by Thoughts
a resident of Another Palo Alto neighborhood
on Feb 1, 2019 at 5:32 pm

I experienced months of dementia because of an infection, just in my thirties. It wasn't as bad as these patients, but it was bad enough that I almost went into nursing care. When I woke up in the morning, I really had no sense of who I was, where I was, how old I was, who I was related to. I would sit up in bed and spend my first moments of the day trying to place myself in time and the world. Apparently I repeated myself frequently; one of the times I would get most upset was when I was chastised for repeating myself.

Because of my age, I needed to know what was going on. In the above case, it would have been okay to tell me, kindly, that I was repeating myself so I understood what was happening, but it was so hard constantly feeling like people were yelling at or angry at me. I guess that was also because of my age, people thought I was doing it on purpose?

I do remember what it was like to experience not having any sense of familiarity with a spouse or friends of many years. I think that was one of the worst things. I used to look for identifying features on my spouse at night to be sure I knew who it was, and then there were many times I woke up with a start wondering who it was next to me. I was terrified, in a way, that my spouse would find out that I was experiencing this and it would irreparably hurt our relationship. (Not that it was possible to hide the dementia symptoms, but that aspect of it was deeply frightening.) Then when my spouse went on travel, I woke up wondering if I was alone in the world.

My spouse had to arrange our home so I could function, but still, I would forget to eat unless I was really hungry and wandered by the refrigerator -- I just forgot that there was such a thing as eating, I was completely in the moment. I discovered my plants every day - pleasant surprise, but then I would worry about who was watering them.

I think in that situation, it would have been a bad idea to lie to me, because I needed to know the truth so that in my more lucid moments, I was able to understand that something was really wrong. When people yell at you for repeating yourself a lot, you can't avoid understanding that something is not normal. Again, it probably would have been just as helpful if people had told me, in a concerned way instead. But if people had simply humored and lied to me, I might not have gotten the help I needed in time to treat what was wrong.

My spouse's uncle died of a brain tumor far too young, and when those symptoms began, everyone chalked it up to early Alzheimer's because of the family history, delaying the real diagnosis way too long. Long before the diagnosis, I was very upset hearing that no one was considering anything else, but there was nothing I could do. Because of his age -- and he wasn't THAT old -- everyone just assumed there was nothing to be done, and that robbed his children and grandchildren of years and even decades with him.

My point is that I don't even think lying should depend on the stage of dementia, but rather, on the context, the outcome or consequence of the lie.

I think what is described above is perfectly appropriate and kind. Families who are up to it might consider jotting down notes as things happen and when they are able, putting together a guide book for others with how they handled such situations, because despite my personal experience, I found it extremely difficult to interact with a dear friend who died of Alzheimers at a stage when she was very confused. Part of my problem was that in my own situation, I needed people to be honest with me -- even when hearing the truth was really upsetting because it made clear just how wrong things were going -- it would have furthered my distress to think I was being humored, it wouldn't have done me any favors. So I didn't know how to judge when/how to use a compassionate lie for her when that was appropriate.

My heart goes out to everyone featured in this story. Thank you for sharing these painful memories to help others in the same situation. Knowing about how to respond to someone asking to go home would have spared another dear friend a lot of grief (as a surviving spouse).


1 person likes this
Posted by Not new
a resident of Palo Alto High School
on Feb 1, 2019 at 9:07 pm

This is not new. It has been used elsewhere. It was written up in The New Yorker magazine, focusing on a nice retirement community in Ohio.


3 people like this
Posted by Paula Wolfson
a resident of Midtown
on Feb 1, 2019 at 11:52 pm

I thank the PA Weekly for this article as it provides the opportunity for our local community to engage in critical thinking about how we will cope with longevity and caregiving challenges.

I think the most important L word in this discussion is love. Not lying.
Caregiving is love in action.

For those of you new to caregiving, learn about validation therapy and techniques.

This is technique requires careful cultivation.

Validation technique helps caregivers focus on the emotional components of a conversations as the key pathways for helping our care recipient feel valued, respected, appreciated, affirmed and loved.

Tone of voice is soft, words slow, not rushed, speak clearly, gently, keep it simple.

Share positive feelings, sweet stories, redirect, give helpful, useful information and roll with their moment to moment focus. There is somewhat of an improvisational technique at play here because you are adding a "yes..and " response to whatever they bring up. This takes practice.

Take an improv class and perhaps practice with your family and peers.

Referrals and Resources. We have in our local community a highly sophisticated network of elder care medical and community providers.

For those of you who are newly diagnosed with cognitive changes and for those of you new to caregiving, please feel free to call my office.

I will help you assess your unique situation, be pro-active, create teams of support and link you to area resources.


Pro-active planning is best to avoid decision making during a crisis.

Kind Regards,

Paula Wolfson, LCSW
Manager,Avenidas Care Partners
650 289 5438


5 people like this
Posted by Eileen Smith, RN
a resident of another community
on Feb 4, 2019 at 8:47 am

We were taught in Nursing school to never argue with a dementia patient. If this meant harmless deception, it was employed. One retired shoemaker from Bolivia always wanted his “pesos, sepattas and his casa.” We would walk with him during the night shift and eventually he lost focus. Who knows what home he wanted—maybe someplace in Bolivia 1957. This man was with us 6 months. Another skinny octogenarian was an Italian WWII survivor, who frequently would “hide from the Germans.” She gathered shoes from the other patients to “ give to the shoeless.” How do you orient people who are living somewhere else in their minds? You comfort them as best you can and agree with absurd thoughts. Lying? Maybe. But safety first. Why orient to the point of rage? My patients were in stages where they attacked. Could be a son they no longer recognized like a 58 year old former banker. I remember them all. Heartbreaking. I was dealing frequently with rage. You bet I lied. The banker’s son cried as his father introduced himself to his own son daily. As far as the banker was concerned, a stranger was trying to bathe him. Attack. So the son became a hired aide who desisted in trying to orient his father.


3 people like this
Posted by Bunyip
a resident of Adobe-Meadow
on Feb 5, 2019 at 10:55 pm

Is it lying or just participating in their world?
If they want to be called by a certain pronoun, why not?


6 people like this
Posted by Law & Order
a resident of Barron Park
on Feb 6, 2019 at 1:17 pm

I have been lied to on countless occasions (as have others) & outside of a few 'senior moments', I do not have a dementia diagnosis.

It is unfortunate the assisted-care facilities have to use fibs and/or psychotropic drugs to reassure their residents that everything is OK. Most do it because it frees their attendants from having to respond during late-evening/early-morning graveyard shifts.

Assisted-care facilities are a growth industry as many Baby Boomers are now approaching or at that age where confinement may become necessary to accommodate those with dementia/Alzheimer's.

Conservatorship attorneys will be another lucrative field as 96% of all conservatorship petitions are granted by the probate courts allowing the offspring early retirement options via immediate access to family trust assets as they no longer have to wait for their parents to die.

All it takes if for an MD to verify that the elder is no longer capable of managing their finances or self-administering their meds.

Then it's EZ Street for those who filed for the petition...happens more often than one thinks.

Greedy children and crooked lawyers get the ball rolling & lax probate courts enable this form of legalized embezzlement.

Old people beware...especially if you have children as some value money over you.


Sorry, but further commenting on this topic has been closed.

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