Is this usual?

sulliesgirl

Is it usual for a doctor not to tell the patient that they have Alzheimer’s? My mom has not been told her diagnosis. I understand that it may cause depression or a feeling of hopelessness, but I truly think my mom needs to know why she is forgetting things and losing the ability to care for herself. Thoughts?

M1

welcome to the forum. It won't register even if you tell her, that's part of the problem. Most here don't discuss the diagnosis with their loved one; many (>50%) have anosognosia, which is a feature of the disease that prevents them from perceiving their deficits. Here's a story I have told here often: when I first realized my partner was in the early stages, I told her my concerns and she about took my head off. I then went to our excellent primary care doc, thinking that if she heard it from him, she would have this "aha" moment, would realize what developing dementia meant, and would then know that she needed to defer to me to make certain decisions and to help her. Our doc literally laughed at me. Unfortunately that's just not how it works. You have to learn workarounds to take care of her without expecting her to understand the reasons why.

Quilting brings calm

My mom has heard the word dementia multiple times from various doctors. It’s never once registered with her. We just leave it as memory issues…and tell her that a lot of people her age have them.

terei

’Memory issues’ is all that is necessary IMO. There is no reason to give the PWD an explanation of their illness. It is doubtful they will remember it + even if they do, what will it accomplish? They cannot change the trajectory of the illness whether they have the information or not. ‘Alzheimer’s’ can strike terror to the heart. The word alone can be traumatic for some people.

H1235

When my mom was diagnosed the doctor did tell her. She even now knows she has dementia, but she believes it’s only memory. In her mind she just has a little trouble remembering doctors appointments that’s all. In reality it is so much more. Her biggest problem is rational thinking and anosognosia. She does see her thinking as mixed and not possible, and explaining it to her it will just make her mad. So we are the bad guys for not letting her mow the lawn. Good luck, this is a wild ride we are on with our lo.

Smilescountry

My dad doesn't really understand that he has Alzheimer's. The neurosurgeon who prescribed him medicine for his memory and depression is just a nice doctor who is going to make Dad better (Dad's words). Then Dad will tell everyone that he has every intention of living to more than 104 (age his mom died). Therefore, we don't mention it because Dad tries to fix everything, and if he were told about this illness he would try to do something to remedy the illness--and then get very upset were he not to succeed. Mom, on the other hand, knows that she is having cognitive problems, but they aren't diagnosed yet and might never be. She talks about it often but follows up with the fact that she is doing pretty well for 88 years of age. Not sure that I want a diagnosis for her, although I will mention it at her next regular appointment. She would just worry, and I am not sure that much could be done considering the rest of her medical history.

mabelgirl

Curious discussion. My moms doctor did try to make her understand her condition but quickly witnessed my moms volatile reaction and accusations that I put her up to saying that. Although my mom has anosognosia, I do believe there is some recognition happening as she will occasionally ask if I gave her her pills to help her brain. We go over her meds quite frequently and that she takes pills to help her memory. Other than that I don’t mention it because she turns nasty quickly if I do.

Emily 123

My mom had completely forgotten her 3 hour assesment and diagnosis by the neuropsychologist by the time we got out of the elevator in the lobby. We just go with ‘foggy memory’ because she’s older and she’s okay with it.

Much of fairly early stage caregiving is adjusting to the fact that your person can no longer process, retain, or react to information like they used to, and learning what works best for them. It’s hard to take away autonomy, even harder to try to do it discreetly.

Wanting your loved one to understand their diagnosis is natural, but generally by the time you get to the point where there’s testing involved they’re going to struggle with understanding/believing/recalling a diagnosis. For one thing, their memory is such that the recent past is not held in their memory, so they have no reference points about their behaviors. They think things are fine because they can’t recall ANY instances where things weren’t fine.

Trying to get them to see that there are issues when they can’t recognize what’s happening helps no-one. If enough attempts are made to talk to them about how they’re struggling, it can cause them to assosciate the negative feelings around that with the person who’s trying to tell them. If that’s you, then it sets you up for a rough ride as you caregive in terms of priming them to resist you.