Should a parent know they've been diagnosed with Alzheimer's?

Restrada01

Hello,

My 84 yr old mother was diagnosed with pre-dementia in August 2023 and I'm trying to navigate how to best help her. My greatest challenge is that my 3 sisters have taken advantage of my mother's condition and changed her PoA and trust. Additionally, they have kept me away from my mother and any of her medical appointments/updates. I'm currently in court requesting guardianship. Since her diagnosis I don't know if she progressed to Alzheimer's and whether it's worsening. She was put on medication in August. My question is should my mother be told of her diagnosis? The legal issue is that my mother has memory lapses. She will forget details of a conversation 10-20 minutes after a conversation and you have to repeat things. She still has long term memory, but it's the recent events or conversations that she forgets. I'm trying to figure out whether she should be told that she has Alzheimer's. Thank you.

SusanB-dil

Hi restrada01 - welcome to 'here', but sorry for the reason. Whether to tell your LO or not depends a lot on them. Many of our LO's have anosognosia. This is not denial, but rather, the firm belief that nothing is wrong. You could start by asking her what the doctor said. See what she says about it and go from there.

Sorry your sisters are not cooperating and undermining her care. You may want to speak to a CLEC (elder care lawyer) to see if there is anything to be done about that, especially if you have all your paperwork, and even proof, in order. You are already taking the step to guardianship to watch out for her, so that should help.

M1

Welcome to the forum, and I'm very sorry that there is family conflict.

Generally, the answer to your question is no. Most on this forum do not discuss the dementia diagnosis with their loved one. Most have anosognosia, which you can read about--it's a feature of the disease that prevents them from being able to be cognizant of their deficits; they generally think they are fine (kind of like you don't know what you don't know). Most will also become defensive and upset if confronted. I made the rookie mistake of telling my partner I thought she was developing dementia and nearly had my head taken off (this was 2014). Additionally, most will not remember the conversation anyway.

I made another rookie mistake, when I asked our excellent internist to tell my partner she had dementia. I naively thought that hearing it from her doc would lead to an "aha" moment that would lead to understadning on her part, and knowledge that she needed to defer to me for decision-making. Our doctor literally laughed at me when I brought this up. And he was completely right. she is now in memory care, and still has no concept that there is anything wrong with her.

Anonymousjpl123

I would not recommend it, because there is little to be gained. I made a rookie mistake of trying to talk to my mom about her diagnosis, and while nothing terrible happened, because she didn’t agree with the diagnosis, I soon realized it would not help anything.

I do find it helpful to have honest conversations with my mom, but often the things I fear talking about most (like explaining why she can’t live by herself, or in assisted living) are impossible to have because she really can’t logic anymore.

One thing I will say: I never say dementia or Alzheimer’s. I will occasionally mention “memory issues.” Because I don’t want her to feel more afraid. But everyone is different. Your mother may be someone who needs and wants to know what’s going on, in which case you can share what is comfortable. Just realize she may forget, and also may not understand. It’s so counterintuitive.

Sorry about the family issues as well. Unfortunately these often come with the territory. I hope you can find a good counsel, and some help.

mommyandme (m&m)

My mom got herself diagnosed. As an RN she was always seeking medical answers for her ills. So, she knew the diagnosis at first yet we discussed it very little. I was out of state so I wasn’t really aware of her earliest stages. As she declined she’d ask why she had problems. Once I asked her if she knew what dementia/Alzheimer’s was and she said “no”, no more discussion on her diagnosis. We simply validated feelings and empathized with her struggles going forward.

I’m not sure there’s much of a reason to discuss it unless she literally brings up her diagnosis meaning, she’s cognizant of it.

psg712

I've never discussed it with my mom. Just talking about things like her "bills" (mail solicitations that she felt obligated to "pay") would make her really angry. And yet, when I had to locate my dad's death certificate to take care of some business at the bank, I found the certified copies in a box of old newspapers and magazines. All of these publications had articles about memory loss. Paragraphs specifically about Alzheimers were underlined. The dates went back almost 15 years. Did she know? She never talked to us about it. And she is far beyond the ability to remember or discuss it now.

H1235

You say she forgets recent events and conversations. I think this is your answer. Even if she does remember she is probably not going to be able to truly understand it. My mom knows she has dementia but believes it only affects her memory. She remembers the diagnosis from the doctor visit. She doesn’t understand why she can’t power wash the swing??, be at her house alone, or why she can’t work out in the yard by herself. I don’t think telling her would serve any purpose. For her logical thinking and reasoning has been effected more than memory.

Azinn

Hi, I'm sorry your sisters are taking advantage of your mother's condition. It's so sad to hear stories like that. Not sure telling her would change things as she will only forget. My mother has dementia, we've held off on getting her tested for Alzheimer's as getting her diagnosed won't necessarily change things and won't open her up to more affordable resources or medical care. She is aware she has "memory issues" as her mother went through a similar thing but she is not aware at how advanced it is. She denies doing anything she doesn't remember and it doesn't stop her from repetition.

Motochris

I'm kind of in the same boat. My mother knows something is "wrong with her brain", she knows her memory isn't what it used to be, she knows she has issues finding the right word(s), she knows she's unable to do things like work her computer like she used to.

She goes in for Neurophsyc testing in a couple weeks so we can get a diagnosis. We have spoken about dementia and Alzheimer's because the doctors have, but she really doesn't know what those are. Her neurologist told us that "there's no cure" for what she may have...and she remembers that mostly. She asks often "what is wrong with my brain?" "Am I going to get better?" "I sure hope they have a fix for my brain." I'm torn with what to do or say once we get an official diagnosis....

Emily 123

https://alzconnected.org/discussion/comment/202086#Comment_202086

Motochris, It's ok to leave it as an aging or memory issue with your loved one. In your mom's case, while the memory is the most visible loss, other things are affected as the disease advances through the brain, like the ability to process and understand information. She may not recall the exact information around the doctor's visit, but she is hanging on to the fear about 'no cure', which can't be good for her. We would go with 'foggy memory' and tell my mom she was 'doing ok' and reassure her that we'd take care of her. At some point it's kinder to be soothing than truthful.

rdcap98

I’m struggling with the same thing. My dad went from assisted living where he “broke out” after getting irrationally angry over a fantasy story he made up. He then spent 10 days in the hospital behavioral health clinic to make sure there wasn’t something else going on (anxiety mostly). But he couldn’t go back to his assisted living apartment and was moved to memory care. He totally doesn’t see it but he’s living in fantasy stories. The only thing I can think to tell him about why he’s in memory care is that Covid broke his brain (partially true and he says that all the time) and that he needs to be where he can receive more oversight and care. Right now he’s refusing to speak to me on the phone (I live 400 miles away) and he threw my sister out when she went to visit him today. I don’t know if right now it’s better to leave him alone and just call and check in on him with the staff or continue to press him to talk to me. I don’t know what to tell him - he’s sad, he’s mad, and he just thinks he’s fine and we’re being unreasonable. It doesn’t help that my mom passed from dementia six months ago (altho he NEVER mentions her). This is just the worst and is breaking my heart. Thanks for listening.

M1

Hi rdcap. You may do better to start a new discussion, it takes a while to get used to the forum setup.

I would probably not try to call him for a while as he adapts. My partner has been in memory care for two years, and I can tell you that phone calls are very difficult for her to process; she will forget it in a matter of minutes. I would touch base with the staff, but give it time. You might ask them if they have a way of setting up a FaceTime with you at some point--being able to see you as well as hear you might make more sense to him than just hearing your voice. But at any rate: don't try to reason with him or explain why he's there, none of it will matter and he will just argue with you. All you can do is reassure him and tell him you love him and leave it at that.