Who tells the patient he has dementia, and when?

Throughout the entire journey, my husband knew he had Lewy Body Dementia. It was very important to him to have an explanation for what was happening to him. (He was an engineer. Cause and effect were concepts deeply ingrained.) I am so glad we could talk about it openly. I could say, "You are right. You can certainly carry a full tray. It's ol' Lewy I'm worried about. I'll carry the tray this time, just in case Lewy tries to interfere." I could hug him and say, "I'm so sorry Lewy is being such a bother today. We'll start over tomorrow and maybe he won't be around so much."

My husband, dear Coy, donated his brain to be used in dementia research. This was extremely important to him and I think to research as well. He knew there wasn't a cure for him, but he hoped our grandchildren would have better odds.

On the other hand, my mother's main coping device all her life has been denial. No one has told her she has dementia. We don't see the point. Today when I visited her she wanted to know how she was going to get to dinner. I explained (as we do on each visit) that a helper would come and wheel her into the dining room when it was time. There are a lot of helpers here. Now that you are almost 95 there are some parts that aren't working as well as they used to. It is good you are at a place where there are so many people to help you with getting to the dining room and remembering your appointments and seeing that you have what you need." She is very proud of her age, and intends to live to 100, so for her blaming her impairments as just part of aging seems logical and acceptable. She doesn't need to know she has dementia. My husband did.

This is not a one-size-fits-all situation. It depends on age, personality, life outlook, and other intangibles.

Is your friend married? Will his wife be going with him? What kind of doctor is he seeing? For example, it is a geriatrician (specialist in elder care)?

From what I've seen, often a PCP will avoid a diagnosis of this kind but send the patient on to a specialist who will do further testing if dementia is suspected. In our case the specialist talked directly to my husband about his diagnosis. I think this varies a lot from practice to practice.

The Dr doing the testing told us, but my husband just thought she was talking about someone else, and this was early on. I tried to broach the subject, it was a no go, at that point I felt there was no need bringing it up again, that was 8 years ago, to this day none of my husbands doctors say the word Alzheimers - The good thing about having Alzheimers, is you don't know you have Alzheimers. I have read of some that are told and they actually keep logs on themselves pertaining to their changes, but that is mostly a younger onset of the disease. I would not push it, let the Specialist do it, if he accepts it and wants to talk about it, it's ok. One important thing is Power of Attorney would need to be done before he gets worse and is not mentally capable of understanding what he is signing. That's harder to tell the person then the actual diagnosis. But on here you can find the answers.

He will tell his primary he is just fine. The primary will agree he is fine. I've seem my MIL do this many times. It's called "showtiming".

The Dr sat in front of my Mom and told her what may happen but didn't mention Dementia. She was really upset one day because she thought she was going crazy. I told her then she had Dementia. A couple of days later she showed me an article in the paper on "what I told her she had". Does she understand what that means, I don't know but I won't tell her again. When she's upset, just tell her its part of her problem.

My Mom goes to a neurologist. He didn't use the word Dementia but he did sit down in front of her and tell her what may happen. I told her she had Dementia becauseshe was getting upset abouther confusion. I won't tell her again. I write her doctor a note about her changes. This way he has an idea what questions to ask.

The subject did not come up with my friend. He just accepted that he needed more help when his family moved him to Long Term Care. He is very accepting but I am very sad because we were close friends for 15 years and I miss him so much. The separation does not seem to affect him too much but he is delighted when I am able to visit. He is 95 and I am 92. Old age can be a sad time! .

I coach my mother so she doesn't get upset if she can't answer the questions. How does it serve anyone if she is told she is demented? I like to just address each "episode" and hope for the best next day. I keep the doors locked so she can't get out at night and have a full time caregiver. We coddle her in her dementia at age 104, why do I want to upset her?

Jeanne, that was well said. You handle everything with class. I don't have that ability.

It's fine to "coddle" someone and keep them safe and secure...no need to tell the elder that they are failing. I do object to keeping the physician in the dark, though. How does it serve the level of care to pretend that there's no problem? In my case, everything depends on me and my skills. I believe my MIL needs 24 hour nursing care, and I'm only capable of giving her 18 hours. A diagnosis of dementia would help my husband understand that it's not ok, it's not getting better, and that his Mom is not getting the care she needs.