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Just wondering if anyone could share their thoughts on providing medical test results to a neurologically compromised elder. This neuro decline has been progressive and runs alongside serious physical deficits. Her anxiety, delusions, and hallucinations are serious, but no one will treat this until we complete a host of tests to assess possible causes. Medication has been discussed but no one will prescribe it until we do these tests to see what might show up. This lady is in a nursing home for the duration. She will never get out. Even when "well" she lacked the understanding of her medical tests and generally did not fully understand what the doctors told her. She recently had some testing done, and the results are not good. It's nothing that's putting her at death's door, but still... not good results and further testing is ordered before her confusion/anxiety will be treated. I feel that sharing details of her test results is not fair to her. There's nothing she can do about it and it's irreversible. She does not have the capacity to understand and I fear her symptoms will only be exacerbated when she starts trying to understand what I'm telling her and assimilate it. As an example of how confused she is right now, she cannot remember what body part she had testing on and it was only a few days ago (it was her brain that was tested). She remembers having the test, but does not remember what was tested. I can't see giving her info/results that she cannot process. So far, I have told her that additional information is needed as there were some questions from the recent test and she would be having more tests. The problem will be if/when a doctor decides to blurt it out but perhaps by then we will have some answers and will have addressed the severe anxiety? Does anyone have experience on telling vs. not telling test results to someone who might understand/remember "just enough" to be further stressed by it?

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Explaining test results to someone with more advanced dementia is a total waste of time and something she'll either not process, immediately forget, or create further anxiety if she does understand to some degree! It's a lose lose imo. If further meds are going to be prescribed as a result of the tests, just tell her she's getting a new med to help her sleep or help her feel calmer or happier. Explaining complicated matters to my mother is an exercise in futility. She wants to see the doctor for a magic pill to cure her pain, that's all. She has no interest in hearing what's wrong with her and she'll accuse me of lying if I say she has dementia or memory problems even! She just wants the doctor to tell her she's fine and will live to 115 and here's a nice pill that will take away all your pain. She can't comprehend much of anything else and her ego prevents her from accepting there's anything wrong with her in the first place.

Fwiw, I think you are spot on in not telling your mom any details about her test results or what's wrong with her. Leave well enough alone and don't cause her more anxiety than she already has to deal with. Half truths, white lies and therapeutic fibs are a total necessity for dementia patients! Applying rules of normalcy to this brain disorder makes NO sense! Keeping them happy and calm is all that matters.

Good luck!
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againx100 Oct 25, 2021
100% agree with this answer!
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My Mom also cannot remember what she did yesterday. She is 91. She used to be manipulative and often mean and needy.
She is sooo much nicer now. It’s been such a nice break for me and I’m not angry with her anymore. I’m choosing not to do anything about it. No tests or meds. (Dr. agrees this is ok) She is well cared for and I visit and take her out a couple times a week. Just letting nature take its course. If she gets anxious I just change the subject and redirect. Working well. I’m thanking God she is easier to deal with!
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Reply to Crazysue
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1. Is her consent needed for the further investigations?
2. Assuming "yes," what does she need to know to give (or withhold) valid consent?
3. Leave it to the doctors to explain what they recommend. Be with her to support her, but do not interrupt, and don't paraphrase or interpret what's been said unless she asks you to. Give her time to ask her own questions. If you have questions of your own, go slowly and speak in simple terms so that she has a fair chance to keep up.

Compare and contrast:

the CT scan showed cerebral atrophy
versus
the test you had last week gave the doctors a picture of your brain, and they want to have a closer look to decide what's best to do next.

She would not be alone in not understanding - in being bamboozled and frankly bored by - a sheet of figures with unfamiliar units attached to them, and a deluge of esoteric terms. You want to work on a Need To Know basis, and that means figuring out first what she actually does need to know.

If she *asks* you right out what the test results are - is she likely to? - then you give her the headline (e.g. multiple infarcts), and then the layman's explanation (e.g. "this means that the blood supply to your brain isn't working properly.").

Be calm and give her credit for being able to understand (even if you have your doubts). Don't make your concern about increasing her anxiety a self-fulfilling prophesy.
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Reply to Countrymouse
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In her last years, my mom with MCI could apparently still understand most things IF she could remember the discussion long enough. But, she often would not remember the discussion in the next few hours and days. She knew she was having problems with her memory. When she fell and damaged her knee due to her spinal stenosis, I also wonder how much to tell Mom. I decided to tell Mom the basic facts, but not expand on them too much. If she asked a question then I answered it. Mom may not have understood all the answers, but I think she did understand I was answering her questions and that I had a good understanding and we (the doctor and I) had a plan for her care. She seemed comforted by my certainty that there was a plan. For example when Mom fell, I told her the fall had messed up the prosthetic in her knee and it could only be fixed by surgery but she was not a good candidate for the surgery so my brother and I had decided to see how she could do with some rehab first. I told her the spinal stenosis was bad enough now she would not be able to go on her long walks outside on an uneven surface again, but we hoped rehab would allow her to regain movement in the house with a walker. I didn't tell her the doctor believed she would be confined to a wheelchair and for another 2 years she wasn't. I went to all Mom's appointments and was in the room with Mom when the doctor gave his/her opinions and instructions. Mom occasionally came away from the doctor's appointment with mild anxiety, but would be comforted by my certainty things were going to be okay.

I think when we try to withhold information or lie, people with dementia can still pick up on our emotions, so if we are upset or disquieted by "lying", that upsets them more than the truth. I never used the word "dementia" with either of my parents, but I would say things like "because you are having a few memory problems", "your back has gotten worse", or "your brain isn't working as fast as it used to" to explain medications and treatments.
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Reply to TNtechie
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You don't have to feel obligated to tell everything as it would only upset and worry her.
I doubt she would understand what the Dr says any way.

I would also make sure the test are really needed and not just being done as Protocol or for money.
You might also get a 2nd opinion.

It's a fact that most Seniors are Over Medicated.
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Mysteryshopper Oct 29, 2021
Interesting that you mention the medications because I did ask for a medication review about a year ago because I feared she was taking too much. Each and every medication had a clear justification and likely consequences if she stopped taking it. In fact, part of the reason she has to live in a facility is due to damage caused when she took herself off of some of her meds.
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My husband does not know he has dementia. Our PCP thought it would not be in hubby's best interests to know that. Our PCP has been our doctor for over 40 years and he is very much aware of my hubby's personality.

My husband had surgery for a subdural hematoma, and he vaguely remembers it. When he expresses concern over not being able to do or say or remember something, we blame the surgery.

Adictionary, because of other health concerns, our PCP didn't feel it advisable to subject him to any testing or referrals to other doctors. At this point, it is academic and there is nothing that will change the outcome. He prescribed meds on a trial and error basis.

This is what works for us. Please refrain from posting your disagreements with our decisions. This is our rocky road and we are navigating it the best we can.
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Daughterof1930 Oct 26, 2021
Seems you’ve done your husband a kindness, he’s blessed to have you in his corner
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If you don't tell her how will you explain medications that will need to be given once a proper diagnoses is made? You'll have to explain them if she asks and then it will be half truths on top of half truths. I personally think it may be easier in the long run to just be up front from the get go. But you know your mom and regardless of what I or anyone else says on here you should go with your gut and do what you think is best for you and your mom. Good luck to you!
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Mysteryshopper Oct 24, 2021
And that's the other problem - you're right. One test is already leading to the next test and it's hard to know how long of a road that could be. It seems to me that, these days, there is almost always another test or medicine to try - leading to a potentially long journey of stuff that might not help. And, not always knowing what she remembers/understands, I'd hate to add to her anxiety/confusion in any way by telling her too much or too little - there have already been some times when it was more like paranoia and conspiracies. I'd hate to add to her poor mental state in my roundabout efforts to calm her. You're right - there's a lot of stuff to consider.
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Explain things very simply. Tie it back to something she may have noticed, and talk in terms of what they can do to help.
"Well, you noticed that the light hurt your eyes, so they did some tests to see what is going on. The last test came back negative - that means they didn't find anything wrong, so they are doing another test. You might need to take another pill."
Or, "You have been tired. Your kidneys aren't working as well as they should, so they are doing another test so they know the right medicine to give you."
If she is concerned that she has cancer, or something, and you know she doesn't reassure her that the test proved it isn't cancer.
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Reply to Cynthiasdaughtr
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This woman is mentally gone and it would be cruel to add to her fears by telling her. Be kind and make up some kind of a story and do what you can for her. Make sure the doctor does not tell her and upset her even more. She needs no further stress at this point.
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I'm sure if you tell the Drs that knowing the results would make her anxious and all she needs to know is that the tests are to decide which medications would be best for her, then that they will be very familiar with this situation. The results and what they show to not really matter to a patient who cannot understand nor remember them, just which pill she has to take. You are being very caring avoiding any anxiety, I am sure the Drs will support you, they are used to not blurting things out - don't let this make you anxious. xx
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