When to tell the truth and how much of the truth to tell?

I believe in both honesty & kindness.

Honesty is not the full disclosure of a medical report only. It has shades. As others have said, a headline or simple summary is often enough.

It shouldn't include false hope, but can still be focussed on living well & managing symptoms.

Manner of delivery is key: kindly spoken rathan than anxious.

Put yourself in her shoes. Would you want someone hiding it from you? Would she want the truth before, even if she didn’t understand it completely? My mother had vascular dementia . Her doctors ALWAYS discussed her results with her in the room. She basically forgot 99% by the next day but I certainly would never have hid it from her. If she has delusions it doesn’t really matter what reality is, she’ll believe and remember what’s real to her. So she can easily make up and honestly believe something entirely different than reality. But I always made decisions on what my mother would have wanted when she was lucid and she would have been irate if we had kept that from her. With delusions, their anxiety isn’t based in reality. My mother’s concern was how the cat’s litter box grew birds that attacked the cat. Obviously never happened but you could not convince her otherwise ( we had a pet caretaker in the care for her cat since she couldn’t) . I’m just saying, anxiety doesn’t necessarily stem from reality

I disagree with not telling her, if that is the only way to get what she needs. It sounds like if she is distracted after the revelation, she might just forget anyway, my mom does. My sister and I took her to an appointment last Monday. We talked openly in front of her with the doctors. When the doctor left the room, all we had to do was say, "He's such a great doctor, we really like him." She just focused on that, and getting off the table, and all was well.

Palliative (spell) Care.

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.

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

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.

In my opinion, the less said the better. People with Dementia are so unpredictable.

In my case, the more I say (still working on stopping this), the more questions are asked and the more frustration and arguments are caused.

Let sleeping dogs lie.

Only thing I can really say is tell her you're taking her for her annual checkup. Make a joke of it. (Refrain from any mental references though).

I've made a conscious decision not to persue the issue from a medical perspective though as there is no cure and it just causes more confusion and anger which in turn makes her more anxious and quite frankly neither of us needs that.

Sometimes we need to get it off our chest (tell someone else) because we need to realize it's not about us. It's about protecting the sufferer. Almost like taking care of a baby. You don't tell a baby everything (they wouldn't understand). Well the same goes for someone with dementia.

Good luck. It's not easy I know but hang in there.

Mysteryshopper: Imho, a qualified physician uses tact. Therefore, he or she should know not to "blurt out" sensitive medical information to the patient.

You have told her enough: she needs additional testing. Leave it at that. You know her better than all the rest of us. You are dealing with her and don't want to create more stress. Leave it. More than likely, even if the doctor blurts something out, her history of listening to drs shows she doesn't really understand or doesn't listen. You be the ears to figure out what happens next for her.

As a side note, I saw a little cartoon thing once along with an article about when the exam gown goes on, hearing becomes faulty for some folks. My siblings are very intelligent, but ask them what a doctor said -- very apparent they got the white gown deafness syndrome!!

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.

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.

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.

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!

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.

She does not need to know a level of detail she cannot understand. It's great that she cooperates with being tested. It's enough for her to know that the tests are to help the doctor choose the right medicine.

The person who holds her power of attorney for medical decisions needs to know the results of her tests. This person has the ability discern whether more testing is needed or not. This person should also be the one who decides on what she is told, when she is told, and by whom she is told.

Are you POA for this person. If so request that no one talk to her about her care, not even the doctor. Your concerns are valid, she will not be able to comprehend or process what is being said to her so why upset her.

I told staff not to talk to my Mom about her care. As her Medical POA, I was the only one they talked to. I went into her hospital room one time to find two student nurses explaining Moms care to her. There was Mom sitting in up in bed looking at them with that blank stare and smiling. I knew they had lost her after the first word that she was still probably trying to process and told them that.

Keep doing what you are doing.

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!

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!

Well you are right about an elder with dementia being able to remember shocking details. Going through that right now with a 95 yr old.
Your concern about a doctor mentioning is valid. However, would it be any worse where the first mention comes from? Perhaps but maybe still better for the doctor to be the one who brings it up as they can also be the one to explain. I personally would not mention as there is enough that is beyond your control to protect her from or comfort her through that may occur. Besides If you try to explain, your emotions would be easy for her to read as she is familiar with when you are upset, if only subliminally and may be what she responds to more so than the diagnosis.
Perhaps it’s one of those things that it’s better to wait for her to ask and then only answer the specific question she asks. Perhaps that is enough for her to deal with.