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Should the patient be told of the diagnosis?
Ed1937
Posted: Monday, February 25, 2019 10:31 AM
Joined: 4/2/2018
Posts: 2454


In my opinion the answer is "No". Yes, in some ways it makes it harder for the caregiver. But I'll take the "hard part" so my wife doesn't have to worry about it. If she knew, things would not change for her except that she would know her brain is dying. She would be terrified and depressed. I don't see much of an upside for her knowing. I guess you could say that in some ways it is much like anosognosia when they don't know. I also don't think the doctor should tell the patient. In my opinion that is cruel, but that's the way doctors work most of the time. It is time for them to rethink how they handle cases when there is absolutely no hope. How do you feel about it?
Rescue mom
Posted: Monday, February 25, 2019 11:09 AM
Joined: 10/12/2018
Posts: 1406


I know some here have strong opinions about this, so I’ll say real quick I’m talking about me and my DH. What others do is up to them—I don’t understand not telling someone, but I don’t have a say in it. I have enough on my plate without getting into others, so to speak.

But my DH was upset and depressed BEFORE diagnosis with AD. He knew something was wrong, but not what. When the docs told us—both of us, together—he said “least now I know there’s a reason.”

We have not discussed it much since, but we have not avoided it either. (I’m unsure how much he even remembers of that convo where they told him-he had it. There’s not a lot to talk about with him, so much of his cognitive and conversation ability lost)

I don’t see how it can be totally hidden, especially when dealing with health care matters, both related or unrelated to the AD. People will take more time and be more careful in how they handle him, take more time explaining things, knowing he has AD. If they expected him to act or react or follow med. advice as a normal person, that could lead to a world of problems.

And I absolutely tell others; his behavior makes it obvious somethings not right, and it actually has been helpful for others to know there is a reason—he’s not just being a jerk, or deliberately oblivious/obtuse, there’s a medical reason for his off behavior/appearances/actions etc. IME others are more helpful when they know why it’s  needed.

The neighbors can help keep an eye out if he were to get away or there was any problems outside. For example: He’s not outside walking for exercise. If he’s outside alone, they know he should not be there and needs help getting home. Or when the garage caught fire, they knew he needed special help.

And there’s always the chance that I could be suddenly incapacitated, and he would not know what to say or do, and unable to explain anything.

At any rate, you asked, and that’s the way I look at it. (I can debate almost anything, that doesn’t mean I’m telling you to do whatever, if that makes sense.)


Rick4407
Posted: Monday, February 25, 2019 11:13 AM
Joined: 4/4/2018
Posts: 161


My wife & I were told 3 years ago when she was first diagnosed.  Before that she knew there were "issues" which is why she went to the neurologist and did a battery of diagnostic tests.  We both read everything we can about the various dementia's. We discuss it, and how she/we are doing at least weekly. 

Our thinking and philosophy is & has been that at 74 we are both looking at early to mid 80's as our "sell by" date.  So its just a race between dementia, or one of the big 3 (cancer, stroke, heart attack) which one will get us first.  Until then we are pursuing our best life possible and using the most effective method yet determined for combating the onslaught dementia.  That being life style choices: exercise every day, eat healthy, no stress, get plenty of sleep, and then go exercise again.  We know it will get worse, but for this time she is happy and that makes me happy!   


elainechem
Posted: Monday, February 25, 2019 11:25 AM
Joined: 7/30/2013
Posts: 5984


I think that it depends a lot on the person . Sometimes, a person will hear the word "Alzheimer's" and they have a major meltdown. In these cases, it's best to leave it alone and never mention it again. If you use the word "dementia", they may take it better because most people don't understand what that word means. In my hubby's case, he angrily denied having any major problems, so I stopped talking about it in his presence. If it were me, I would want to know every gory detail. That's just me. I need to know. 

Some people are able to understand the truth and appreciate knowing so that they can make future plans. It's all very individual. 


Lorita
Posted: Monday, February 25, 2019 11:32 AM
Joined: 12/18/2011
Posts: 11413


No - what is accomplished by telling them?  Not one thing except to distress them. 
Ed1937
Posted: Monday, February 25, 2019 1:26 PM
Joined: 4/2/2018
Posts: 2454


I knew there would be opinions that vary, and that's perfectly OK. I don't hide that fact from others, but I do let them know I would not appreciate it if they let the cat out of the bag. We don't walk into a store, and then I announce it to everybody, but if I think there is a reason someone should know, especially those in the medical field, they are told about it.
McCott
Posted: Monday, February 25, 2019 2:39 PM
Joined: 8/22/2017
Posts: 391


My husband was told five years ago by the neurologist we saw only one time that he had Alzheimer's.  Just to drive the point home, the MD used the word Alzheimer's at least seven or eight times in the short visit following the tests.  I was there for the tests, and it was indeed pathetic -- the clock, the cube, some simple arithmetic (he had not been able to compute a tip in a while), so I got the idea.  My husband sat there and smiled in his  even-handed, "we're out in public" manner.  After about the fifth or sixth AZLHEIMER'S (heavily stressed), I broke down crying.  The MD turned to me and said "What's the matter?"  I could have strangled him then and there.  Instead I said, lamely, "I'm having a knee replacement in two weeks."  Barely a pause, then "Have someone come in."  He turned back to my husband and continued saying ALZHEIMER'S several more times.  What a guy!  (The next morning he phoned at 7am on a Saturday to ask if I had any follow up questions.  I felt like telling him 1) I didn't remember ever meeting him and 2) why was he waking me up on Sat am, but I just said no; he said OK and that was that.  I guess he had to check that call off a check list.)

On the way home from the neurologist, my husband asked how the visit had gone, and I told him he had ALZ -- he didn't believe it at first, then at home he got very upset and started talking about my driving him into the mountains near us and leaving him there.  I told him I couldn't do that as I would be arrested, so then he started in on "driving the car off a cliff" which went on for a few months.

Then -- guess what -- he forgot about it !  What a surprise!   A year or so ago something came up and he was asking "why" that was the case many times, so I finally said, "because you have ALZ."  He got very silent, tense and said "I need to kill myself."  He was definitely beyond planning this on his own, so I told him I would take care of him and he shouldn't worry.  Within 20-30 minutes, he had totally forgotten about it.

My point:  I definitely think they should be told when they are diagnosed, but there seems to be no point in reminding them of it (or reminding them of anything, for that matter : )


Mainer1
Posted: Monday, February 25, 2019 3:39 PM
Joined: 11/18/2018
Posts: 170


There is clearly no one answer for this question as there are many variables to consider.  In our case, my DW wants to know enough to confront the issue, but not all of the details.  She wants to help with planning for the future as much as she can (she is in stage 5), but overall hates medical issues, medicines and medical language.  We talk about dementia (not ALZ), she is aware of potential timelines, she knows that I have found a memory care facility for when (and if) it becomes necessary, and she trusts me to do the right thing.  She will not, however, visit the facility and does not want to "see herself" there.  So I guess we are somewhere in the middle -- we talk about it, but not in painful detail.
Crushed
Posted: Monday, February 25, 2019 4:51 PM
Joined: 2/2/2014
Posts: 5198


1) Personal experience.  New Neurologist wrote "Alzheimer's Dementia" on the discharge summary.  (replacing mild cognitive impairment)  DW saw it right away. She was a trained pathologist and immediately said to me that Alzheimer's is a pathological diagnosis on autopsy and she wasn't dead yet.  I had been reasonably confident of an Alzheimer's diagnosis 18 months so I was saddened but not surprised.

2) General legal medical/ethical.  Every adult human being has the right to control their health care.  No one else has the right to take that away from them.  So it's not your call. 

In the United States, patient autonomy is a strongly held ethical principle. Although this right to self-determination has not always been the norm in health care, it has become the foundation for all our patient interactions, such as the standard practice of providing sufficient, understandable information to a patient before obtaining consent for treatment. Most recently, this concept of autonomy has extended to the practice of telling patients the truth about their diagnoses and prognoses.

 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2835490/

 

Keith Fargo, director of scientific programs and outreach for the Alzheimer’s Association, believes that people living with Alzheimer’s who are not told they have the disease are robbed of the chance to plan for their future before faculties become too impaired to do so. Fargo stated:

“We believe patients have a right to know that they have this progressive and fatal brain disease. Telling the person with Alzheimer’s the truth about their diagnosis and prognosis should be standard practice.”

 https://www.alzheimers.net/4-13-15-alzheimers-diagnosis-rarely-disclosed/


nonipoppy
Posted: Monday, February 25, 2019 5:46 PM
Joined: 6/12/2018
Posts: 98


I read all the answers here & in our case, he was told by the hospital neurologist that he had CAA when he had the ICH/stroke 01/18, then by his attending neurologist that he had CAA & ALZ when we saw him in May & got the MRI results & he gave him an abbreviated MMSE.  We discussed it several times at home in the early days & he was accepting of it. Now, he doesn't want to hear it, talk about it or admit that there is anything wrong with him except he has "slight" memory & vision problems, but other than that, he's "fine"...back to normal.    Nothing could be farther from the truth.  I have a question about anosognosia:  does that ever go away or is that there for the duration?  And how can you tell the difference between anosognosia & just plain emotional denial or the psychological inability to admit to having a fatal condtion?  Accepting the diagnosis makes him feel totally defeated, what's the point in living & makes him worry about what a burden he will become.  I have quit talking about it or mentioning it unless he asks & when he does ask, I just look at him & if he presses I tell him I don't want to discuss it because he just gets upset, so don't ask.  Sometimes he'll drop it, but other times he really pushes, says he wants to know & then if I answer him honestly, it leads to him either getting upset, angry or depressed. Can't win no matter what I do. 
jfkoc
Posted: Monday, February 25, 2019 5:49 PM
Joined: 12/4/2011
Posts: 18028


What is Fargo's relationship to AD other than he works for them?
w/e
Posted: Monday, February 25, 2019 5:55 PM
Joined: 3/7/2012
Posts: 1738


Should the patient be told of the dx?

Yes. By his doctor. In our case.

My husband was a professor of philosophy. He knew something was going on inside his skull. Something not kosher. He made the appointment(s). He trekked through the mountains of tests. Finally, he asked his neuro, "What's up?"  He was told that it seemed to be dementia of the Alzheimer's type. He simply said, "Okay. The fates have decided to cut the cord early. No more tests for me from now on. See you, doc, in your next life."

He went on to live with the symptoms of dementia/AD for 10 years. 

One fateful morning, he had a sudden heart attack at home while I was preparing his breakfast. I kissed him. He died in my arms loving me, loving him. I whispered to him, "Nice way to die, old man. The gods were good to you." He was 68 y/o.

I miss him beyond measure.


Ed1937
Posted: Monday, February 25, 2019 6:31 PM
Joined: 4/2/2018
Posts: 2454


Crushed wrote:

 So it's not your call. 

I say BS. It's not your call or anyone else's to tell her she has to suffer from major depression because she has been told. We've been married for 61 years, and I know exactly what she wants. And I know she does not want dementia. I also know she does not want to have to deal with knowing the inevitable consequences of her dementia. She does not want to hear that her brain is dying, and there's no hope. Each of us will steer the ship in whatever direction we think is the best for our LO. There is no right or wrong, regardless of how many links you give us.


Ed1937
Posted: Monday, February 25, 2019 8:20 PM
Joined: 4/2/2018
Posts: 2454


My wife was an RN, and many years ago she told me she thought ALS was the worst disease you could have. She worked with some ALS patients. Tonight I asked her how she would handle it if she were diagnosed with ALS. She said "I'd kill myself". Hopefully she will never know she has dementia.
HusbandandCaregiver
Posted: Tuesday, February 26, 2019 5:37 AM
Joined: 8/10/2018
Posts: 117


Yes, definitely my call since I will be my DW's caretaker until the day she dies. I can imagine being told all hope is gone. No need to eat healthy, no need to exercise, no hope for a wonderful retirement, in addition to everything that is happening around me, I have a dreaded disease that took her mother last year. A director of science is not living with the disease every day.
John1965
Posted: Tuesday, February 26, 2019 6:27 AM
Joined: 8/19/2016
Posts: 387


Ed,

I'm pasting the link to the "Interesting Short Read" you highlighted in a different post. It addresses this issue. Thanks for bringing it to our attention.

https://www.newyorker.com/magazine/2019/03/04/how-much-a-dementia-patient-needs-to-know

 


Crushed
Posted: Tuesday, February 26, 2019 6:56 AM
Joined: 2/2/2014
Posts: 5198


Folks, just remember your spouse does not have to give you any personal medical information at all.  Your spouse decides what role you have in their health care.  My spouse gave me a role in writing. At the ER they wanted to see it. 

Until your spouse makes that call, or is incapable of making a call and the state law takes over, no it's not your call. Feel free to check with your lawyer.

 


Ed1937
Posted: Tuesday, February 26, 2019 7:17 AM
Joined: 4/2/2018
Posts: 2454


Crushed wrote:

Your spouse decides what role you have in their health care.  My spouse gave me a role in writing. 

I have the same papers. Even if I didn't, I'd make the same call when it comes to telling her or not. It's in her best interest.

 



Lorita
Posted: Tuesday, February 26, 2019 7:29 AM
Joined: 12/18/2011
Posts: 11413


Hi,

 My husband and I were together when the doctor said he was pretty sure Charles had alzheimers.  We never discussed it and I'm not sure Charles knew what alz. was although my mother had it and he knew about it.  Later, his diagnosis was changed to Vascular Dementia.  Again, we were together when the neurologist gave that diagnosis.  After that we never discussed it.  We'd go to doctor's appointments together and there may have been brief mentions of it during those appointments.  He never really asked questions about his condition.  We just accepted it.  
 

 People don't have to be told that your husband or wife has alz or any kind of dementia.  After a few words they know something is wrong.  I never told anyone about it.  It's not something you can hide.  Don't you know when you talk to someone for a brief time whether or not something is not quite as it should be? 

 Of course it's up to the husband or wife as to whether or not their mate should be told.  Not trying to tell anyone what to do.  It's up to you.  You know your mate better than anyone.


Ed1937
Posted: Tuesday, February 26, 2019 7:45 AM
Joined: 4/2/2018
Posts: 2454


John1965 wrote

I'm pasting the link to the "Interesting Short Read" you highlighted in a different post. It addresses this issue. Thanks for bringing it to our attention.

https://www.newyorker.com/magazine/2019/03/04/how-much-a-dementia-patient-needs-to-know 

Thanks John. I know there will still be different views on this subject, and I would never tell someone their view was wrong because it was different from mine. A differing view is just as "right" as mine.

 



Conundrum
Posted: Thursday, February 28, 2019 2:34 AM
Joined: 6/29/2012
Posts: 292


My late wife (Dawn) saw the word "dementia" on a printout of her health conditions after a doctor's visit. She broke down crying, asking, "Is it TRUE?!?" I hugged her and reassured her, and after a while she recovered and forgot all about it. I mentioned the episode to the doctor at my next appointment (we shared the same primary care physician).We decided it was better not to remind her of it, and she said she'd remove it before printing it out next time, and then put it back in afterward. I think it's best if the patient knows, but if there's an intense emotional reaction to it, maybe you don't need to make a point of repeating it later.
Crushed
Posted: Thursday, February 28, 2019 3:50 AM
Joined: 2/2/2014
Posts: 5198


Ed1937 wrote:
John1965 wrote

I'm pasting the link to the "Interesting Short Read" you highlighted in a different post. It addresses this issue. Thanks for bringing it to our attention.

https://www.newyorker.com/magazine/2019/03/04/how-much-a-dementia-patient-needs-to-know 

Thanks John. I know there will still be different views on this subject, and I would never tell someone their view was wrong because it was different from mine. A differing view is just as "right" as mine.

 


 I simply pointed out the law.   You called it BS.  Then you said you have the paper in writing.   It's the paper that gives you the right to decide what is in her best interest.

"I have the same papers. Even if I didn't, I'd make the same call when it comes to telling her or not. It's in her best interest." 


Ed1937
Posted: Thursday, February 28, 2019 5:21 AM
Joined: 4/2/2018
Posts: 2454


Crushed wrote:

 


 I simply pointed out the law.   You called it BS.  Then you said you have the paper in writing.   It's the paper that gives you the right to decide what is in her best interest.

 


Let me make it clear what happened. We were together in the neurologist's office when the diagnosis was given. She has other health problems, and was not feeling well when we went for the appointment. The diagnosis was given to both of us, but not feeling well, her mind was not on this visit. She did not hear the diagnosis. When it was given, there was absolutely no reaction from her. I was not completely blindsided because I expected a diagnosis of MCI at best, so I was able to hold my feelings back. Even though I did not have the papers at that time, I asked everyone who needed to know of her condition, that they not mention it. Did I break the law by holding that information from her before I got the POA? If so, I'd break the law again if the same circumstances presented itself.


Crushed
Posted: Thursday, February 28, 2019 8:08 AM
Joined: 2/2/2014
Posts: 5198


Ed1937 wrote:
Crushed wrote:

 


 I simply pointed out the law.   You called it BS.  Then you said you have the paper in writing.   It's the paper that gives you the right to decide what is in her best interest.

 


Let me make it clear what happened. We were together in the neurologist's office when the diagnosis was given. She has other health problems, and was not feeling well when we went for the appointment. The diagnosis was given to both of us, but not feeling well, her mind was not on this visit. She did not hear the diagnosis. When it was given, there was absolutely no reaction from her. I was not completely blindsided because I expected a diagnosis of MCI at best, so I was able to hold my feelings back. Even though I did not have the papers at that time, I asked everyone who needed to know of her condition, that they not mention it. Did I break the law by holding that information from her before I got the POA? If so, I'd break the law again if the same circumstances presented itself.

 


She was in the office, so no.  It's when you tell other practitioners not to talk to her that the issue arises. Unless you have the authority they not only do not have any obligation to follow your instruction, it can be  a violation of law if they do.   If she is truly incompetent, state law takes over and determines who can give consent, but that puts any signed papers in doubt.  

We had a case where a woman was injured and unconscious.  Her mother was making all the decisions. Then the husband arrived and "threw the mother out". That was state law.

We had another case where the wife claimed state law authority but daughter had the written authorzation.   Wife was out of the picture.

etc

 


 
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