Does anyone have someone their caring for have any interest in what they have
just curious if anyone taking care of loved ones if they ever ask about this illness and what it’s all about and out come
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please rephrase the question. Are you asking if our LO asks about them having dementia? If so my husband asked me once if he had it and I said yes but we were going to be OK. That’s really all he wanted to know. After that I never mentioned it again and neither did he.
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Most of our loved ones have moved past understanding that they have Alzheimer's, dementia, or even trouble understanding the world. My dh understood that he had Alzheimer's when he was first diagnosed, but within several weeks any mention of the term would upset him. We just stopped talking about it. After he'd been living in memory care for a few months he'd ask me about what we were going to do in our old age—we'd live a long time because, in his view, we were "so healthy."
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Mom heard the word dementia at the doctor’s office multiple times but she never understood that she had it- just went in one ear and out the other. She would sometimes comment on being confused. I just always replied she had memory issues due to her age. She never questioned it.
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Mom remembers she was diagnosed with dementia. At diagnosis she figured she was in the very very early stages. So she still didn’t understand why she couldn’t mow her lawn or live alone. She would often ask for information on dementia which I would give her. But then 6 months later she would ask for information again (forgetting I gave her anything) and accuse me of trying to keep things from her. After a year an a half she told me the doctors didn’t know what they were doing, said she lied when being evaluated. Thankfully she doesn’t mention it much anymore. The other day she did say I hope I never get that bad, when referring to someone in the nursing home who was farther along than her. But then she told the hairdresser she was only there temporarily (I never told her that). In general she doesn’t see herself as confused or forgetful, she tends to blame it on someone or thing else.
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My dad asked me on Saturday if I knew what was wrong with him. I spoke slowly and in a calm voice (I have found that my tone is key). I said that when he sees his doctor, the doctor does tests and finds that he has several problems that we have known about for years. I mentioned anemia and the iron supplements he takes to help with that. And so on.
I got to a point where I said something like “I think the biggest difficulty you have right now is that it is hard for you to remember things.” He agreed that is a problem. I said he is very old, and many people of his age have this problem. I said that there is no cure but I am helping him to manage it, and he will be all right.
I am sure he had forgotten the question before we got to the end, but the information was not the real point. My main goal was to show that I am keeping on top of the facts, I talk to his doctor, and the doctor and I (and the facility staff) care about him and will help him. Mainly the point was to show that I take his concerns seriously, and I have a calm answer to give. He can trust me. He is loved. He is not alone. Those are the messages that matter.
Sometimes I have answered questions like this with more information: “You have a disease that causes your brain not to work as well as it used to.” I compared neurons in the brain to electrical circuitry (as a young man he was trained as an electrician), and said that sometimes the circuits are completed, and sometimes they aren’t. I said that his doctor knows about it, and we are all here to help him.
Other times when the question feels more offhand, I have said, “Well, you’re really old!” He laughs and says, “How old am I?” and we go from there into a different conversation.
The reasoning ability declines and fails; emotional ability lasts a whole lot longer—for many (most?) people, right to the end.
All that said, every person WD and every relationship is different. What works for me may not work for you. But the emphasis on providing comfort can transcend individual experience.
Wishing you the best!
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My DH was diagnosed a year ago in May. He is now approaching stage 4. He was initially releived by having a reason for the memory losses that had been taking place. I am not sure how much he understood about ALZ at that time but since then has no interest in finding out what he can expect down the road and lives in a bubble. He thinks he is fine except for a few memory glitches. He is always shocked when the neurologist asks me what I have been seeing.
As stated by others, what the LO knows or understands is not so important (and certainly depressing so why burden them). What is important is that they know you (or someone) will be there with them and will love them and care for them.
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Interestingly, my mom & I are both RNs. She is my pwd. Initially, she hated when I used the word, so I stopped. Some time later, I came across handwritten notes she had taken from her medical-surgical books. Bless her heart! It seems she is silently and in her own way trying to process what is going on with her.
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My wife must have known she was having problems because she tried her best to hide her symptoms.
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This is such an interesting question, and I think it touches on something caregivers don't talk about enough. Curiosity from the person being cared for can look really different depending on the stage and the person's personality. Some people ask direct questions about their diagnosis and want real answers, while others seem to sense something is different but never name it, almost like they've made peace with not knowing the specifics. Either way it says something about how they're processing what's happening, even if it's not in words you'd expect. I'm curious what prompted the question, whether you've noticed your loved one asking or avoiding the topic entirely.
I also hope these resources can help:
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The only time the word dementia has ever been used in a conversation with my dad (Vascular) was when we took his license about 9 months ago. We got him to go to the doctor who did the MOCA test and said "K, you have dementia and it is my duty to tell you you can no longer drive". After that he would say "well, the doctor says I can't drive" but we never discussed why. Then a few months after that we moved him into a AL facility. A nurse came to do an assessment which I heard from the other room- he didn't know his address and thought the year was 1956! Couldn't repeat a list of words. I wonder if he had any idea why he was being asked these things or understood how poorly he did.
At the facility he would say "Half the people here are really out of it- the other half are just like me!" So I'm pretty sure he has no idea that he has dementia. I wish I understood what goes on in his brain.1 -
I see that I answered this back in Oct '25. The question is even more interesting to me now. DH is now definitely middle stage dementia. I hear him tell people, family and otherwise, that he has something wrong with his brain, and then he turns right around and tells them that after testing the doctor told him that he is above average…whatever that mean. if we are in a conversation and he says something about his broken brain, I gently and with love, tell him that I will be with him always and he doesn't need to worry about it. That seems to satisfy him. As to what does dementia look like, he hasn't a clue and has no curiosity at all.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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