Compassionate deception | February 1, 2019 | Palo Alto Weekly | Palo Alto Online |

Palo Alto Weekly

- February 1, 2019

Compassionate deception

Caregivers grapple with whether it's OK to lie to a person with dementia

by Chris Kenrick

Should you lie to a person with dementia?

This story contains 2333 words.

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Contributing writer Chris Kenrick can be emailed at


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 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' 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.

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