What were the first dementia signs you noticed?

Posted by bclane @bclane, Dec 22, 2024

My husband has vascular dementia as a result of at least 7 TIAs and 1 larger stroke as shown on an MRI. The only one we were aware of was a TIA in 2016. I'm guessing that some or all of the others may have happened in his sleep because there were no obvious signs like there were with the 2016 one.

Anyway, I've been thinking back to things that seemed "off" well before I started suspecting a problem. One thing was that he started mixing up pronouns. He'd refer to a female pet as "he" and vice-versa. He still does and he mostly does it with animals. He'll also tell a male pet that's he's a "good girl" and vice-versa.

When it first happened, it became a joke, but now I wonder if that was one of the first signs that something wasn't functioning the way it should. I'm curious if others can think of things that seemed "off" before the problem became obvious.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

@pamela78

This sounds so much like my situation with my husband. He's so stubborn! He has hearing aids but they're either not working or his hearing has gotten worse. He needs to get checked out and I can't get him to do it. I, too, have to shout at him, right to his face, yet he still insists he can hear me just fine. He wants the TV turned up to ear-splitting levels and I can't stand that. Maybe I'll just make an appointment for him and see if that works. That's what I had to do the last time. He may not mind not being able to hear, but I mind very much. I hate sounding angry when I say anything at all.

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I hope you can get him there. Having to shout at someone just to make them understand is both frustrating and irritating. We've got enough to deal with without having to deal with that if it can be helped.

My husband will buck up about appointments I tell him about in advance, but if I don't mention it till the day it's scheduled for or maybe the day before, it usually goes easier. He loves to go out to eat, too, so if I mention we'll stop somewhere to do that, he usually doesn't object as much. Based on what you're describing, I'd say there's a good chance your husband needs to have that appointment. Good luck!

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@bclane

I hope you can get him there. Having to shout at someone just to make them understand is both frustrating and irritating. We've got enough to deal with without having to deal with that if it can be helped.

My husband will buck up about appointments I tell him about in advance, but if I don't mention it till the day it's scheduled for or maybe the day before, it usually goes easier. He loves to go out to eat, too, so if I mention we'll stop somewhere to do that, he usually doesn't object as much. Based on what you're describing, I'd say there's a good chance your husband needs to have that appointment. Good luck!

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You just described my spouse He loves to eat out. I can get him to get cleaned up too. Hugs

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@wctdoc1943

My wife complained of memory loss for a long time (maybe a year or two) before I ever noticed anything (quite miminal). And I was paying attention. Highly educated people are often difficult to diagnose in the early stages without neuropsychological testing. My wife has a master's degree and taught school 40 years. She eventually fit the diagnosis of MCI, and 7-8 years later the short term memory loss and loss of executive function stand out, but she remains quite functional in knowing family and friends and ADLs, and even driving very short distances to familiar places. Dementia is a spectrum and the course is highly variable. You are correct (as of now) there is no cure and no treatments of consequence. I think our hope is in some medical breakthrough that might halt progression or reverse some of the brain changes. Ongoing research is crucial and I pray the current administration does not set us back too far in that regard 😢.

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@wctdoc1943 thanks for your comment. I’m in about the same place as your wife. I have MCI, my executive function is not functioning, and I have traits of Frontotemporal Dementia.

I have other neurological disorders compounding my situation. Living alone, as I do, can sometimes be disconcerting, but I am working through everything.

One suggestion, your wife might like the Dementia Action Alliance (DAA). I joined several months ago, and have been able to interact with others who have dementia via Zoom meetings. We have fun, and we encourage each other. There’s a Music Zoom that’s basically “name that tune”, an art, and poetry meeting, one titled Faith, Hope, and Love.
Every one of the participants, including the Hosts have dementia.
DAAactionnow.org
I think that is their address. I forgot…

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@SusanEllen66

@wctdoc1943 thanks for your comment. I’m in about the same place as your wife. I have MCI, my executive function is not functioning, and I have traits of Frontotemporal Dementia.

I have other neurological disorders compounding my situation. Living alone, as I do, can sometimes be disconcerting, but I am working through everything.

One suggestion, your wife might like the Dementia Action Alliance (DAA). I joined several months ago, and have been able to interact with others who have dementia via Zoom meetings. We have fun, and we encourage each other. There’s a Music Zoom that’s basically “name that tune”, an art, and poetry meeting, one titled Faith, Hope, and Love.
Every one of the participants, including the Hosts have dementia.
DAAactionnow.org
I think that is their address. I forgot…

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Thank you so much for your response. You sound wondeerful. And thank you for the info about Dementia Action Alliance. With a little searching, I found the website to be daanow.org and I see there is a wealth of information there.

I am not sure what stage of cognitive loss my wife is in right now. Her diagnosis was 7 or 8 years ago, and though I am sure her impairment has progressed, living with her every day, the changes are very gradual and subtle, but the short term memory loss is certainly worse, and she has almost total loss of ability to go beyond the most basic use of her phone and iPad, and the TV remote frustrates her to no end. But she knows family and friends and can drive a car. The only way she could use the DAA site is with my constatnt help (which I am more than happy to do). Even with written directions, she has difficulty managing the steps, and as soon as she loses her place, she cannot regain it. It is so frustrating for both of us, but I cannot imagine being her.

Again, I thank you for responding and for the helpful information. Best wishes to you and I pray there will be a breakthrough in prevention and/or treatment of this cruel disease. Hugs 🤗🤗🤗

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@wctdoc1943

Thank you so much for your response. You sound wondeerful. And thank you for the info about Dementia Action Alliance. With a little searching, I found the website to be daanow.org and I see there is a wealth of information there.

I am not sure what stage of cognitive loss my wife is in right now. Her diagnosis was 7 or 8 years ago, and though I am sure her impairment has progressed, living with her every day, the changes are very gradual and subtle, but the short term memory loss is certainly worse, and she has almost total loss of ability to go beyond the most basic use of her phone and iPad, and the TV remote frustrates her to no end. But she knows family and friends and can drive a car. The only way she could use the DAA site is with my constatnt help (which I am more than happy to do). Even with written directions, she has difficulty managing the steps, and as soon as she loses her place, she cannot regain it. It is so frustrating for both of us, but I cannot imagine being her.

Again, I thank you for responding and for the helpful information. Best wishes to you and I pray there will be a breakthrough in prevention and/or treatment of this cruel disease. Hugs 🤗🤗🤗

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@wctdoc1943 it’s my pleasure to help.
some of the DAA participants will have their care partner sitting next to them during the meetings.
I believe it is worth a try.

You are a wonderfully supportive spouse. You are both lucky to have each other.

Thanks for the 🤗 they made me smile!

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My Mom started confusing things about two years ago, as an example; 1. insisting that my son born in 2000 had met her former boyfriend back in 1969.
2. Being confused about whether she is upstairs or downstairs in our home. She lives downstairs with easy access to outdoors. 3. Forgetting that certain family members are deceased.

These were the early warning signs that things were not the same - that dementia was starting to change my Mom.

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The first thing that I noticed a couple years prior to DW's diagnosis, was her concept of time. When she would recall something, say a visit or experience or some kind, she didn't know if it happened yesterday, or a month ago. Then as time went on, her short term memory kept deteriorating, and the endless repetition began. She is now in stage 6.

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@chris20

The first thing that I noticed a couple years prior to DW's diagnosis, was her concept of time. When she would recall something, say a visit or experience or some kind, she didn't know if it happened yesterday, or a month ago. Then as time went on, her short term memory kept deteriorating, and the endless repetition began. She is now in stage 6.

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Chris20, I am curious how you determined your partner is in Stage 6. Did a neurologist say that, or were you able to determine that yourself from other sources? My husband was officially diagnosed with Alzheimer's about 2 years ago, but the signs were there several years before that. Forgetting names of people, not being able to retrieve the right word, unable to learn how to operate the remote control, DVR, induction stove, etc. The latest is that he seems directionally challenged, i.e., will go left when he should go right.

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@ret2tus

Chris20, I am curious how you determined your partner is in Stage 6. Did a neurologist say that, or were you able to determine that yourself from other sources? My husband was officially diagnosed with Alzheimer's about 2 years ago, but the signs were there several years before that. Forgetting names of people, not being able to retrieve the right word, unable to learn how to operate the remote control, DVR, induction stove, etc. The latest is that he seems directionally challenged, i.e., will go left when he should go right.

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Here is a link to the seven stages, but remember every person is different and will have exceptions to any chart or rule for determining where they are. Some, including my wife, seem to be in late stage 6, and yet most bodily functions are normal, but I have to be vigilant with things like safety, first aid, and her personal hygiene. I also have to monitor her food intake and I make smaller meals otherwise she will have second and third helpings. I suppose I could start fixing less tasty meals, lol.
https://act.alz.org/site/DocServer/sevenstages.pdf?docID=16881

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@chris20

Here is a link to the seven stages, but remember every person is different and will have exceptions to any chart or rule for determining where they are. Some, including my wife, seem to be in late stage 6, and yet most bodily functions are normal, but I have to be vigilant with things like safety, first aid, and her personal hygiene. I also have to monitor her food intake and I make smaller meals otherwise she will have second and third helpings. I suppose I could start fixing less tasty meals, lol.
https://act.alz.org/site/DocServer/sevenstages.pdf?docID=16881

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Early stage I find forgetting eating and wanting to eat again right after a meal. I like the idea of smaller meals. I am trying to keep a schedule/routine of three meals and two snacks. Started to tire easily and taking very long naps midday.

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