Living with Dementia

Symptoms: Memory issues, getting lost easily, and a noticeable decline in cognitive function.
We’ve already ruled out Alzheimer, Huntington’s, Parkinson’s, and similar conditions. Brain tumors? Out. Psychological causes? Ruled out too. Most of the doctors we've seen pretty much agree that this is an organic issue. We've been running tests for over a year now—everything comes back looking perfectly normal. But let me tell you, it's obvious that something is seriously wrong.
We're running out of options here.
What kind of chemical imbalances could be at play? It isn't B12 deficiency, and it's not hormonal...
Is there some specific specialist we might have overlooked who deals with cases exactly like this?

How many years has this been going on, and what kind of meds have they been taking? Any history of dependency issues? Also, could we be looking at vascular dementia—you know, from those tiny, silent micro-strokes that slip under the radar?

Is there a chance their mental health struggles are actually being misread as dementia? (Maybe the psychiatrist missed something😉). And did they check their thyroid levels?

Charles Edwards8 said:How old are we talking here? And what kind of meds has she been on up to this point? Any history of addiction? Or maybe it's vascular dementia—you know, those tiny, asymptomatic micro-strokes that fly under the radar?

Or maybe we're looking at a case where psychiatric issues are being mislabeled as dementia (maybe a psychiatrist missed something)😉—has she had her thyroid checked yet?

She's 55. Medically speaking, nothing major—just chronic migraines her whole life. She takes Zomig for those, but no, it's definitely not side effects from the Zomig. No substance abuse, doesn't drink, doesn't smoke.
Vascular dementia is off the table too. Most doctors have pretty much agreed that this is organic—meaning something physical is actually going wrong in the body, like a hormone imbalance where something is being overproduced or underproduced.

Psychological causes aren't it either. After dealing with psychiatrists who were basically just throwing schizophrenia meds at her because they'd say, "We don't know what's wrong, so just take this," we finally found a top-tier specialist. She isn't psychotic.

Thyroid levels, ultrasounds, scans—everything comes back normal.

So far, none of the tests are showing anything out of the ordinary.

invisible f said:What exactly makes them so sure it isn't Alzheimer's? Brain atrophy doesn't necessarily show up right at the start...

They ran the tests through alzheimer.org—it's official. Besides, her memory issues don't even fit the typical Alzheimer's profile. Plus, at her age, Alzheimer's would be moving way too fast; there's just no way she could have cleared those diagnostic tests she took.

This case definitely feels unique.
Has anyone considered "Pick's disease" (frontotemporal dementia)?
While the line between Alzheimer's and Pick's can get blurry sometimes, there's a real distinction there. (I don't want to get too technical here, but with frontotemporal dementia, you see a specific imbalance in certain proteins.) More importantly, frontotemporal dementia tends to show up in people under 65.

At some point, you've got to ask yourself how far you really want to go searching for answers.
If you're actually willing to look for options outside of the US, I can help you out—just shoot me a DM.
Grinding away at tests for over a year without finding anything is just exhausting for the patient and the whole family. (It’s pretty obvious she’s "wandering.")🙄 🙄

Yeah, they initially suspected all those degenerative diseases, but there isn't one single "textbook" symptom that points to any of them. Instead, you get this weird overlap—one symptom from one condition, one from another. It creates this total contradiction where a symptom from one disease essentially cancels out the other; for example, it’s like saying it’s impossible for someone with Alzheimer to pass certain short-term memory tests while simultaneously failing the specific ones that define Alzheimer.
It’s a massive headache for us, and honestly, just as much for the doctors.

And how far are we willing to go? Well—as far as our options allow.

How is their motor coordination holding up? Also, have you noticed that specific "vacant" or lost look in their eyes? It’s really important to get them to a neurologist for a brain CT scan. To be honest, when we were dealing with my mother, we kept brushing off the possibility of Alzheimer's because, let's face it, we just weren't ready to accept it. We ended up wasting so much precious time bouncing from one doctor to another. I’d suggest checking out alzheimer.org and making sure they see an actual Alzheimer's specialist.

urbanjackal12 said:How's their motor skills? Is there that vacant, "lost" look in their eyes? You really need to get them to a neurologist and run a brain CT. Honestly, we spent so much time chasing our tails with different doctors because we just weren't ready to face the idea of Alzheimer's with my mom—we were totally in denial. It was a huge waste of precious time. Check out alzheimer.org and make sure an actual Alzheimer's specialist looks at them.

Alzheimer's is definitely off the table here. We've already done the brain CT, seen several neurologists, and gone through multiple rounds of testing specifically for Alzheimer's. So, this isn't some case of us being in denial or trying to rationalize things.

Sarah Kelly51 said:Symptoms: Memory loss, getting lost easily, cognitive decline.
We’ve ruled out Alzheimer, Huntington’s, Parkinson’s, and all that jazz. Brain tumors? Nope. Mental health issues? Ruled those out too. Most doctors seem to agree it's something physical. We've been running tests for over a year now. Everything comes back "normal." But look, it's obvious something is seriously wrong here.
We're running out of road.
What kind of chemical imbalance could this be? It isn't B12 deficiency, and it's not hormones...
Is there some specialist we haven't thought of yet who actually handles this stuff?

Honestly, it’s pretty ridiculous to drop a highly specialized medical question like this on a bunch of random people online who don't know the first thing about dementia—most of whom probably only know the name Alzheimer. For what it's worth, there are over 100 different types of dementia out there. If you want an answer, go talk to an experienced geriatrician who lives and breathes this stuff, and make sure you give them a full, detailed history. 🙂

mistyhound2 said:It’s honestly laughable that you’re dropping such a highly specialized question on a bunch of laypeople—people who probably don't know a thing about dementia beyond hearing the name Alzheimer's once. For your information, there are over 100 different types of dementia out there. If you want an actual answer, go ask an experienced geriatrician who actually specializes in this stuff—assuming they can even get a full medical history from you. 🙂

It is genuinely ridiculous that you're looking down on the info available here, or the chance to swap experiences, recommendations, and advice. Look, I'm obviously not expecting anyone to jump in and say, "Yep, the diagnosis is 100% X." But thanks to this thread, I've picked up details that might actually be useful. And for what it's worth, I've also passed along doctor recommendations to others. You really think I haven't spent the last year seeing top-tier neurologists, psychiatrists, neuropsychiatrists, and toxicologists? 🙂 Right now, I don't need the patronizing. 😉

Honestly, whether there are 100 people involved or way more doesn't really change the core issue here.
The main thing is that this thread exists so we can swap ideas, offer support, and actually try to help one another. Just a heads-up though—I am definitely not a fan of looking for "quick fixes" on an internet forum.
I'm not sure where you're located, but trying to hunt down specialists in America when you could just find top-tier geriatricians locally feels like a total waste of time.
What’s the logic behind specifically naming three geriatricians in America?
Also, since we're clearly talking about early-onset dementia, I'd suggest hitting up some neurologists first.😉 55 years old.

1. What does dementia actually entail? Is it strictly limited to forgetfulness, or is it just the general tendency for older adults to misplace things?

2. I wanted to share a personal situation from not too long ago to see if you all think it might point toward some form of dementia. After my grandfather passed away, my late grandmother fell into a very deep depression. She stopped taking her medication, struggled significantly with weight gain, and dealt with severe edema—just massive fluid retention throughout her body. She completely withdrew from the world; she essentially just wanted to pass away. After a while, she started constantly telling my mother how terrified she was that someone would break into the house at night, and she became hyper-vigilant about any sounds coming from outside. There was also this one instance when she visited us; she just wandered out of the room for no apparent reason, then walked right back in and sat down exactly where she had been, without offering any explanation. During that same period, she suffered a mild stroke. She was hospitalized in the neuropsychiatric ward on two separate occasions, though nothing specifically indicated she was nearing the end. In her final conversation with my mother, she mentioned her legs were hurting terribly and she couldn't stand for long (likely due to the swelling). Ultimately, she passed away from a myocardial infarction less than two years later. She was only 64 at the time, passing three years after my grandfather 😢

3. Does this constellation of symptoms suggest a neurodegenerative condition like Alzheimer’s or perhaps Jakob Krojcfeld disease? The specialists in neuropsychiatry didn't diagnose anything of that nature, but I am curious. It wasn't as if she forgot our names or who we were. If it was indeed something like that, is there a risk of family members inheriting these two types of diseases? I know the latter is incredibly rare, and I don't believe anyone in our family history has had it, but I'm interested in the connection...

Thank you in advance for your insights.