Telling a Patient they have Alzheimer's
January 28, 2016 3:46 PM   Subscribe

This is not anything I have to decide as it is about a close friend, not a relative, but there are several of us who have been friends since high school and we are very concerned about the friend who has been diagnosed with Alzheimers last year, but her daughter has made the decision for now not to tell her what the diagnosis is. Friend and daughter live across the country, so anything we can do is long distance, and we do not really know how to deal with this.

My friend is 69 but looks 20 years younger, a beautiful woman who has always made bad choices in men and is now alone. Her daughter got her out of an unsuitable living situation and into an apartment, which was fine for a while, but she is less and less able to take care of herself. When she talks to us she goes on about how her daughter won't get her car fixed, and she does not know why. Nobody has told her it is not safe to drive, or why she takes the medicine she has been prescribed or goes for "vitamin shots", I think because she was malnourished. She is also becoming paranoid about a lot of things, will not looks at assisted living because it is " full of old people," seems unaware that anything is really wrong with her. Daughter and sisters had feared she would "give up" if told she had dementia. I don't know what is right; if it were me I would be suicidal given that diagnoses, but I do not know that she would be. On the other hand it must be hell to not understand why you can't get your car, or why simple things like using the microwave are now beyond your understanding. Anyone with experience or expertise with dealing with dementia in a comparatively younger person, please reply. I honestly do not know if it would help or make it worse for her to be told.
posted by mermayd to Health & Fitness (18 answers total) 3 users marked this as a favorite
 
I have, and it was to a woman who damn well there was something wrong with her and just wanted to know what it was. Then we cried for a long time, and still frequently do. I don't know what to tell you. She may know full well there is something wrong, but doesn't know what, and is trying to figure it out. Or maybe she doesn't, but soon will. Mine hates knowing, but also hates not knowing. There's no good answer. I'm so sorry.
posted by Mogur at 3:56 PM on January 28, 2016 [1 favorite]


For me, it comes down to informed consent. She is being given medication to which she has not consented. I would inform the daughter that her mother is still a human being with agency, and that I have just told her mother her diagnosis.
posted by feckless fecal fear mongering at 3:57 PM on January 28, 2016 [10 favorites]


Even if she was told, she might not understand why things are the way they are. This is a no-win situation, and her family is coping the best way they know how. They have more information about what is going on with her day to day.

We have friends who are going through this now with their father who is also relatively young. He was told, but he doesn't understand, he thinks he has parasites. It's a real drag.

Continue to call your friend and humor her.

I'm so sorry, this is just horrible.
posted by Ruthless Bunny at 4:00 PM on January 28, 2016 [1 favorite]


Is it at all possible that she was told, but now doesn't remember being told?
posted by anastasiav at 4:06 PM on January 28, 2016 [16 favorites]


Hello, I'm so sorry to hear about your friend. I have experience with this. I'm POA for a dear friend with dementia who has no family. Depending upon the stage of dementia, it can actually be more therapeutic to tell "white lies" like the car is broken or she needs vitamin shots than to tell the full truth.

It's pretty upsetting to hear bad news even if you have full cognitive capacity. But Alzheimers isn't just about being forgetful, it affects your ability to regulate emotions, think and problem solve. So, at this point, hearing that she has dementia might not be very helpful for this woman. It might just frighten her and feed the paranoia.

It's important that her daughter do what she can to keep her mother feeling calm and happy. It's also important that her mother trusts her and sees her daughter as an ally. Telling white lies helps with both these things.

We were able to keep my friend living in her home for four years and very worried about moving her to Memory Care. She had been a very independent woman, but when the time was right we were able to make the move and she adjusted beautifully. She was not involved in the choice or decision--she couldn't be. But, she's very happy where she is now. And yes, we had to tell some white lies to get her there.

The Alzheimers Association has a great helpline staffed with social workers who can help your friend figure out how to handle things. And if you are worried, you also can call.

http://www.alz.org
24/7 Helpline: 1.800.272.3900

Best of luck to your friend. I know it's really hard for everyone involved.
posted by magnislibris at 4:07 PM on January 28, 2016 [26 favorites]


Dementia, especially advanced dementia is extremely challenging and your friend may not have the capacity to understand what's happening to her. Or, she's been told in any number of ways, but can't comprehend or remember what she's been told. While it used to be common for doctors to "shield" patients from a traumatizing diagnosis, that's no longer the case. If your friend has been seeing doctors, has been prescribed meds, and has a confirmed diagnosis of dementia/Alzheimer's, you can assume she's been told directly by her physician(s). She may be in denial or may not be able to remember. As you're not geographically close and can't help with logistics of care, leave that to her daughter and sisters who clearly know her well and are looking after her. If you have an issue with not telling her, take it up with the daughter and sisters. Don't take it upon yourself to drop this on your friend and leave others to manage the aftermath.

Often times, people with dementia can still recall old memories and reminiscing can bring them quite a bit of enjoyment. As this is a friend from high school, you're in a unique position to redirect conversations toward stories from your shared past.
posted by quince at 4:08 PM on January 28, 2016 [14 favorites]


I'm so sorry this is happening to your friend. I was the primary caretaker for the last seven years of my grandmother's life as she succumbed to Alzheimer's, and it is utterly heartbreaking. Unfortunately, it's possible she has been told and has forgotten. Or you may gear yourself up to tell her, do so, and have a deeply emotional talk with her about it, only for her to forget the next day. In my grandmother's early stages, she forgot that her husband had died five years previous, and would ask where he was every evening. Each time she realized he was gone, it was like fresh grief all over again. Sometimes little lies are far more preferable than the truth.

I agree with quince--steer the conversation towards old shared memories. Memories of music often lasts the longest. My grandmother was able to respond to old favorite songs even in the last week in hospice care.
posted by lovecrafty at 4:28 PM on January 28, 2016 [4 favorites]


In response to the comment about informed consent, it's important to realize that either her doctors have informed her of the diagnosis and she has consented to any procedures (as quince pointed out - it would be wildly illegal otherwise), OR the daughter has legal guardianship of her mother and is therefore able to make medical decisions for her. Since she was just recently diagnosed, I would be surprised if legal guardianship had happened already, but I suppose it's possible. If the daughter is the legal guardian, that would be a sign that your friend is no longer able to fully understand her situation.

This is not to say whether keeping the diagnosis from her is right or wrong, just that it's unlikely that her doctors are in on keeping this secret if she still has the mental capacity to provide her own consent.
posted by scalar_implicature at 4:33 PM on January 28, 2016 [10 favorites]


Best answer: Early-onset dementia is difficult for all involved, not in the least the caregivers, whatever the relationship is. Despite your feelings – which are natural – I would ask you to consider that whilst you may feel that your friend is entitled to know, someone else (her daughter) is in the role of caring. What for you may be conveying a piece of information that you consider important, relevant, and necessary may well make both the mother's and daughter's lives more difficult.

For that reason, I would encourage that you first speak with the daughter honestly and in detail about what is going on. The above post may be right – your friend may have been told, and now forgotten. The daughter may have been advised by a doctor to minimise confusing information. There are a number of dementia-related reasons that may be involved.

I knew a man who had quite deep dementia. Deep in the sense that the dementia was very aggressive, but his social coping mechanisms were very strong. Thus, he often appeared coherent and engaged. Yet, as it worsened, it became noticeable that he navigated conversations by asking questions and telling stories, not necessarily engaging directly, but giving the appearance of engaging.

One afternoon, he complained most emphatically to his son about the shape of the swimming pool – it was square when he had specifically instructed that it be built round. Apparently that was his pool from three decades prior, in a different state. In discussing that with his nurse, the nurse encouraged the son not to argue with him. Given the state of the dementia, to attempt to correct the father on "fact" would only serve to confuse and distress him. As it happened, the father was often confused and distressed. The next time he complained about the pool, apparently the son agreed and said that he would call the contractor the next day and discuss what they could have done about it. The father smiled and patted him on the shoulder. He then never mentioned the shape of the pool again.

I share that because there are nuances to each person's movement into dementia. It's dealing with a human being on a level that can only be described as a completely subjective reality that is divorced from a common / shared reality. It takes time and close interact to understand what the person's reality is, and is becoming. Apparently, many people with dementia become socially disengaged in part because people constantly try to help them by correcting them, in honest attempts to reconnect them with reality. That can result in a deep confusion, which can then lend itself to a depression that the affected person cannot communicate.

It's a dark, fascinating illness with many facets and we know so little about how experience of people in the cycle is perceived. Again, I would hope that you can have an open, honest conversation with the daughter and take insight into what the actual mechanics involved in the situation are. From there, you will gain a better view of what is going on with your friend, and her treatment.
posted by nickrussell at 4:35 PM on January 28, 2016 [25 favorites]


The people I know who have gotten Alzheimers had it explained it to them when they were diagnosed, and their doctors discussed their options and their prognoses. The two I was closest to, however, both were in some denial about it for a while, and then eventually progressed to the point that they couldn't understand.

If she's in that sort of condition, it does seem cruel and unnecessary to continually be reminding her of her diagnosis. Sometimes, it's just kinder to go along with the narrative they've come up with, rather than delivering the horrible news over and over again. There's a point where they will forget every single day, and every single day, the people closest to them will have to decide whether to tell them about their diagnosis or inform them that their parents, their spouse, their friends, their siblings died years ago; and sometimes, the most humane thing to do is to give them a break from the constant reliving of loss and let them just experience ordinary frustrations like car troubles and bureaucracy and annoyance that their long-dead spouse is working so late tonight.

In the early stages, I think they usually do know that something is happening to them, whether they can remember specifically and articulate it or not. And I suspect that if they're not asking directly what is happening, there is probably some element of denial to it, and in a way, that's a decision they've made for themselves.
posted by ernielundquist at 4:56 PM on January 28, 2016 [4 favorites]


I've been through this with a close relative. He knew what his diagnosis was. That didn't make matters any worse, but it did not improve them in any way, either. The mental and emotional states of a person with dementia are governed by the dementia, not by reason. You are not in any way guilty or a bad person for not telling her. Please don't second-guess her primary caregiver.
posted by bricoleur at 4:56 PM on January 28, 2016 [3 favorites]


Response by poster: Just be clear, I would never tell her. That is up to her daughter and two sisters. The sisters are also across the country from her, it is only her daughter and daughter's husband who are nearby and any decisions are up to them. Her daughter has power of attorney for her financial matters, and I assume for medical as well. I will ask her. Thanks for all responses, keep them coming, they are helpful. Her daughter did tell me that the doctor said she compensates a lot so it is not always apparent how much she has lost. She is good talking about old shared memories, I try to do that when I talk to her, and with my other two friends we visited her for ten days last spring while she could still enjoy doing things, and I made a memory book for her of the visit with photos and drawings. We were both artists, she worked in commercial art for years.
posted by mermayd at 5:43 PM on January 28, 2016 [1 favorite]


Vague euphemisms can be useful. "Yeah, things are all so complicated these days..." (Which is actually true).
posted by ovvl at 6:47 PM on January 28, 2016 [1 favorite]


"In response to the comment about informed consent, it's important to realize that either her doctors have informed her of the diagnosis and she has consented to any procedures (as quince pointed out - it would be wildly illegal otherwise), OR the daughter has legal guardianship of her mother and is therefore able to make medical decisions for her. "

Wildly illegal or not, I can testify that this happens. I have witnessed several situations where a person with no legal authority has been allowed to make medical decisions for someone with mild dementia – including surgery in direct violation of the patient's will. I have had several elderly relatives with no children or spouses, and it is utterly shocking how easy it is for a random relative to be accepted by doctors as making medical decisions without going through legal channels. I have seen this occur in several different hospitals. None of these were emergency situations. So I would not assume that someone making decisions for a person with dementia has medical power of attorney.
posted by FencingGal at 7:37 PM on January 28, 2016 [4 favorites]


Oh, the compensation thing can be very deceiving. With someone who is polite and socially adept, they'll often do that thing that you do when you're talking to someone you don't recognize and you're trying to be polite and pretend you remember them. Like, you stick to general questions and hope something jogs your memory so they don't realize you don't remember their name or something? Except they'll be doing it with close friends and family who never suspect.

Some people are very very good at masking their symptoms with simple ingrained social adeptness, so it is possible that she's declined more than you realize.

And you might have to talk to her about it. Not long ago, someone with Alzheimers told me that her doctor had been removing parts of her brain and asked me to make him stop, so I had to explain to her that her doctor had just told her that her brain has a disease, that he was trying to help her, and that nobody wanted to hurt her. It was horrible, but it was better than the alternative. If she asks you directly about her condition, I think you should tell her, as gently as possible.

If you get a chance, maybe have a longer talk with her daughter about the best way to approach things, and if you can think of anything at all that you can do to make anything easier for the daughter, please do. She's probably physically and mentally overwhelmed right now, and could use any support you can provide. If you have the resources to do so, set up an account for her to have some meals delivered or anything else you can think of that might help. This may well be the hardest thing she's ever had to deal with.

(Although it is horrifyingly plausible that something like FencingGal mentions is happening here. I've seen people brazenly do wildly illegal things too many times to discount the possibility. I just don't know what you could do about that beyond just answering any direct questions as gently as possible.)
posted by ernielundquist at 8:51 PM on January 28, 2016


There was an interesting segment of This American Life about using techniques from improv comedy to interact with a person with dementia - I found it really fascinating and the people involved said it improved how everyone got along (in this case, a couple and their mother in law).
posted by sallybrown at 7:59 AM on January 29, 2016 [1 favorite]


Best answer: Agree with those who say that it's often confusing and depressing for people with Alzheimer's to be corrected on the facts in an attempt to bring them back to reality (whatever THAT is!).

My mother had Alzheimers for about 10 years in her late 60s and 70s. My dad, from whom she was divorced, died during this time, and we told her. She took it hard. The next time we saw her, she asked how Dad was. She took the news that he had died hard again, and on the third or fourth time we told her, she took it hard and also got angry at us for not telling her about it sooner, for keeping this information from her. We were slow learners but eventually realised that telling her that he had died was not the best option, so when she asked after that, we told her he was fine, which for all we knew, was also true.

One thing she often said as the disease progressed, in response to almost anything we said, was "Well, you never know." I found that to be a good response to her as well (along the lines of ovvl's "things are so complicated these days"). It seemed true to her experience of life -- she did never know -- and to ours in relationship to her.
posted by mmw at 8:03 AM on January 29, 2016 [2 favorites]


I am the caregiver for my mother who has dementia.

Is this question really about whether she should be told, or about whether she is getting the support she needs to remain at home (for the moment--hopefully everyone involved understands that things are going to get worse, often rapidly, as that is the nature of Alzheimers). The real issue I see here is that it is almost impossible to properly support someone with dementia from a distance, unless they are in care where others are attending them on a daily, often hourly basis.

I think I would also not see the point of telling her her diagnosis. It's a depressing, terminal illness in which you ultimately lose your sense of self and often your knowledge of the ones who love you the most. Knowing a diagnosis will not improve her coping.

You write, "it must be hell to not understand why you can't get your car, or why simple things like using the microwave are now beyond your understanding". It is hell. But the dementia caused that, not the family. On Alzheimer's caregiver boards, we remind each other not to explain too much, as the person's "reasoner is broken." Explaining often causes enormous upset and paranoia and depression in the person with dementia. It is hard to accept this until you have been in the caregiver's shoes, though. Which you are not.

It might be useful to know that there is a term, Anosognosia, the lack of awareness that there is cognitive decline in oneself, which may be another factor here.

http://www.alz.co.uk/icaniwill/library/family-carers-and-friends/diagnosis/anosognosia
posted by Riverine at 9:22 AM on January 29, 2016 [3 favorites]


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