Dementia Signs we Missed

[Anonymous]

Anonymous wrote:We saw all the signs, my mother refused all testing.

Been there. Sadly one actual symptom can be total lack of self-awareness regarding the decline. Also, sometimes they notice, but go into denial and become hostile when you want to get an evaluation. Fun times.

[Anonymous]

Anonymous wrote:For my dad it was number 2. Called me out of the blue and said a lot of mean things. Only in retrospect did the behavior make any sense.

Did your dad have any of these tendencies before, but just much better self-control? My mom would get really nasty on the phone and in person, but it was a worsening of behavior that already existed. She just had better controls and more people shutting it down when she was younger. She passed the screener (which I think is useless), but they did push her to get onto meds for mental health since she would not get therapy. It wasn't until I set firm boundaries, got her outside help and pulled away that she started lashing out at others and anyone cared. Until then, she could turn it on for others and seem a bit out there, but normal enough.

[Anonymous]

Anonymous wrote:Started forgetting how to use technology or, really early on, became unable to understand basic technology concepts like texting. With my mom the computer got confusing first, then the television then finally the cell phone. It’s truly is like watching them age in reverse.

That's the same with my dad. I bought him a new phone but he couldn't set it up and said it was complicated. I thought he just hadn't read the instructions...a year later phone was still in the box. It struck me as odd but looking back that was first sign he needed help.

[Anonymous]

Even if you had interpreted the signs correctly, it wouldn’t have changed much. I saw the signs very early on, no one else noticed. My mom refused to get tested for almost 2 years. Then she was tested, they saw some decline but only after an MRI and a stroke were they able to see the extent of the damage. Anyway, she is taking her meds now, but once the decline has started, like in all the examples above, you can’t stop it. The medicines barely help.

[Anonymous]

Anonymous wrote:Even if you had interpreted the signs correctly, it wouldn’t have changed much. I saw the signs very early on, no one else noticed. My mom refused to get tested for almost 2 years. Then she was tested, they saw some decline but only after an MRI and a stroke were they able to see the extent of the damage. Anyway, she is taking her meds now, but once the decline has started, like in all the examples above, you can’t stop it. The medicines barely help.

There was a thread on Bluesky recently about how the meds for Alzheimer's are based on a a bad theory and got FDA approval despite results that didn't meet the usual guidelines.

https://www.science.org/content/article/potential-fabrication-research-images-threatens-key-theory-alzheimers-disease

That's not to say no one should take meds for any form of dementia (although my dad had Parkinson's and the meds made things worse), but if someone you love is having bad side effects, don't feel like you should push them to stay on because the benefits outweigh the costs. There probably aren't any benefits.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Even if you had interpreted the signs correctly, it wouldn’t have changed much. I saw the signs very early on, no one else noticed. My mom refused to get tested for almost 2 years. Then she was tested, they saw some decline but only after an MRI and a stroke were they able to see the extent of the damage. Anyway, she is taking her meds now, but once the decline has started, like in all the examples above, you can’t stop it. The medicines barely help.

There was a thread on Bluesky recently about how the meds for Alzheimer's are based on a a bad theory and got FDA approval despite results that didn't meet the usual guidelines.

https://www.science.org/content/article/potential-fabrication-research-images-threatens-key-theory-alzheimers-disease

That's not to say no one should take meds for any form of dementia (although my dad had Parkinson's and the meds made things worse), but if someone you love is having bad side effects, don't feel like you should push them to stay on because the benefits outweigh the costs. There probably aren't any benefits.

These drugs don’t really help at all and can have serious side effects, if you’re talking about the two new ones. The older ones barely help either.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Even if you had interpreted the signs correctly, it wouldn’t have changed much. I saw the signs very early on, no one else noticed. My mom refused to get tested for almost 2 years. Then she was tested, they saw some decline but only after an MRI and a stroke were they able to see the extent of the damage. Anyway, she is taking her meds now, but once the decline has started, like in all the examples above, you can’t stop it. The medicines barely help.

There was a thread on Bluesky recently about how the meds for Alzheimer's are based on a a bad theory and got FDA approval despite results that didn't meet the usual guidelines.

https://www.science.org/content/article/potential-fabrication-research-images-threatens-key-theory-alzheimers-disease

That's not to say no one should take meds for any form of dementia (although my dad had Parkinson's and the meds made things worse), but if someone you love is having bad side effects, don't feel like you should push them to stay on because the benefits outweigh the costs. There probably aren't any benefits.

https://bsky.app/profile/rahaeli.bsky.social/post/3l37amageem2y

[Anonymous]

Anonymous wrote:Even if you had interpreted the signs correctly, it wouldn’t have changed much. I saw the signs very early on, no one else noticed. My mom refused to get tested for almost 2 years. Then she was tested, they saw some decline but only after an MRI and a stroke were they able to see the extent of the damage. Anyway, she is taking her meds now, but once the decline has started, like in all the examples above, you can’t stop it. The medicines barely help.

I certainly think the meds were useless. What a diagnosis does do is help people prepare and understand what is ahead. I recall trying to get my mother to make her own medical appointments. It was so pointless in retrospect. You can also try to move them into a facility that offers memory care for when they need it or at least start thinking about. It is hard to plan ahead for every contingency, though.

[Anonymous]

With my mom, it was the passwords! She kept needing help with passwords. Maybe I have it now too! I keep forgetting my passwords because we have to keep updating them!

[Anonymous]

My mother always put a lot of effort into her makeup and fixing her hair. I noticed her slacking in those aspects. That was like two years before she was diagnosed.

[Anonymous]

OP back. Also, my MIL’s eyes. It’s sad, but even in photos there’s just no glimmer or liveliness - more of a vacant look in her eyes. She looks very tired (and I’m certain she’s not sleeping well).

My FIL is hung up on next steps and apparently wracked with indecision. He was told that further testing is needed (a spinal tap!) to make a more complete diagnosis and to get into studies (!) and possibly get the right meds prescribed. So, his new excuse is he doesn’t want MIL to be subjected to such procedures and is unsure if a specific diagnosis is going to help. It’s been almost a year since MIL was diagnosed with significant cognitive decline. Seems like it’s a wait and see/ignore/pretend everything’s fine.

I’m worried about my FIL and what the caretaking will do to his health.

I’m aware of the flawed study about amyloid plaques. So we’re all going in circles and that part is frustrating.

[Anonymous]

Anonymous wrote:OP back. Also, my MIL’s eyes. It’s sad, but even in photos there’s just no glimmer or liveliness - more of a vacant look in her eyes. She looks very tired (and I’m certain she’s not sleeping well).

My FIL is hung up on next steps and apparently wracked with indecision. He was told that further testing is needed (a spinal tap!) to make a more complete diagnosis and to get into studies (!) and possibly get the right meds prescribed. So, his new excuse is he doesn’t want MIL to be subjected to such procedures and is unsure if a specific diagnosis is going to help. It’s been almost a year since MIL was diagnosed with significant cognitive decline. Seems like it’s a wait and see/ignore/pretend everything’s fine.

I’m worried about my FIL and what the caretaking will do to his health.

I’m aware of the flawed study about amyloid plaques. So we’re all going in circles and that part is frustrating.

FWIW the spinal tap is not what we envision from the 70s. It's minimally invasive these days. My dad had one recently.

Also FWIW further testing doesn't change anything regarding treatment, but it can change others' perceptions and expectations. After my dad was diagnosed with FTD, it put a lot of his behaviors into context. It also set our expectations for what he could and couldn't do, and it justified some things like taking away the car keys, which we had been debating for some time. It may also help you qualify for various forms of support and aid from the state or federal level.

Also, he was enrolled in a study at a nearby university, so I like to think that even in his decline is is contributing to the health and treatment of future patients. This would not have been possible without the more detailed diagnosis of FTD and not just "dementia."

[Anonymous]

Anonymous wrote:I think my parent is heading in that direction:

Rarely showers

Often sleeps in day clothes

Circular conversations

Could also be depressed or not sleeping well

[Anonymous]

Anonymous wrote:My MIL also has dementia and it’s so hard.

Sending you a hug.

Another sign we missed was that my MIL would use an incorrect word. Like instead of saying “this might be of interest” she said “this might be an inference”…initially we laughed about it bc we thought it was just a random every once in awhile thing. But it became more and more common until it was apparent something was quite off.

I’m in my 50/ and doing this word switching — I’ve been told it’s common to have that kind of aphasia with menopause and post menopause. I wouldn’t make too much of the word switching itself unless the higher level thinking/reasoning is also falling apart.

[Anonymous]

My grandmother ran into my sister in a grocery store sort of unexpectedly and didn’t recognize her -/ because she wasn’t expecting her there.

But I want to caution that a lot of these things can be caused by other things as well, including underlying conditions that were never diagnosed because they just didn’t do that years ago. For instance, my father failed the in office screening test for Alzheimer’s because he has raging undiagnosed ADHD and those tests are heavy on working memory. They had no baseline for working memory for him but I knew it was terrible — his whole life he wrote down notes or relied on my mom. It’s 15 years later and he still is fine with no Alzheimer’s. My mom, for her part, has some of the behavioral changes. But she has undiagnosed anxiety disorder — as she ages and her old routines become impossible, she gets really upset (the same way a kid with anxiety gets so upset when forced to do things outside their comfort level). She just has troubling adapting to new realities.

I’d also really really encourage folks to find out more about how they are sleeping. The one time I was really worried about my dad’s cognition was years ago, when he just stopped people able to think through even simple things. It turns out that a new medication was causing awful insomnia which he finally admitted when I was like “what the heck is wrong with you? You’re not making any sense??” A lot of older people have trouble sleeping and your brain and especially memory will not work without sleep.

Cardiac output problems (clogged arteries leading to the brain) can also cause cognitive impairment and is really easily fixed by cleaning out and stentjng those arteries.