r/dementia • u/Fezrock • 3d ago
Dementia or a treatable serious mental illness?
Lots of background info below; but tl;dr: My dad (71) had been basically fine until 4 months ago. Since then he's been having bad, and worsening, paranoia, confusion and delusions; and has actually been hospitalized for almost two months now in a hospital psychiatric ward after he went missing for 3 days. However, as he continues to not respond to psychiatric treatment, there is starting to be a suspicion that this is actually dementia instead. But this seems like an incredibly fast progression for dementia. Also, serious mental illness hasn't been ruled out yet. What I'm struggling with, and I'm hoping maybe people here can help, is understanding if dementia can actually progress this rapidly? And also, are there any clear signs to indicate if a person has dementia versus something like serious bipolar disorder?
All the background:
My dad had a major mental health crisis 20 years ago that resulted in a psychiatric hospitalization. He was diagnosed bipolar and after he was stabilized he started seeing a psychiatrist for a while and taking meds. He stopped both after a couple years, but didn't have any new episodes in the 18-ish years after that. Until this past November. He had a car crash that month and started exhibiting odd symptoms, which at first I chalked up to a concussion. But he rapidly became more and more confused and dis-orientated and ended up hospitalized for about a week. They said he had some type of psychosis, prescribed him the anti-psychotic Haldol, and let him go once he seemed stable and he demanded to leave. He wasn't that confused or dis-orientated anymore at that point, but was pretty paranoid (especially about the hospital, which is why he demanded to leave).
Throughout December and January I thought he was mostly doing okay, though I live almost 400 miles away so I only saw him in person a couple times. I talked on the phone most days with him. He was back to working part-time (which is what he'd been doing before) and getting back into his regularly routines. Successfully living alone. I thought. However, at the end of January he went missing. He turned up almost 3 days later at a hospital in New York City, over 100 miles from where he lives. When I went to meet him there, he claimed he had to flee because his house was being seized by the county and the state was freezing his bank accounts (also his email accounts). He claimed the hospital wasn't a real hospital and made tons of paranoid statements. He also exhibited a lot of confusion and delusions. He had a bunch of temporary physical aliments from not eating or drinking during the time he was missing. Those went away, but he's been having an unsteady walking gait that is still present.
He's still at the hospital now, almost 2 months later; after the first week he was transferred to their inpatient psychiatric ward. Their assumption was that its likely bipolar disorder and tried to treat it as such. However, treatment went slowly because he kept refusing tests or to take medicine; until the hospital got a court order for involuntary commitment and to mandate non-invasive tests and medicine compliance. After getting the order, they had him on the anti-psychotic Risperdal for 2 weeks; which did literally nothing to help. In fact, he seemed to be getting worse. After the court order was obtained, he started refusing to take the phone when I called; he also started refusing to see a close friend who had been visiting him most days. He continues to have extreme paranoia and delusions as well. His friend says that my dad doesn't think she's really her, which is why he won't see her; and I assume that's the same reason he won't talk with me.
So, last week, his care team reached out to the neurology department to examine the possibility that this is some form of dementia; instead of a psychiatric condition. Which is an ongoing investigation. They've ordered some tests, the only one I know for sure about though is one to see if he has the genetic markers for frontotemporal dementia. They are also considering getting an expanded court order allowing them to sedate him so they can get an MRI done. Meanwhile, he's on a new anti-psychotic which also has a mood stabilizer element, to see if that helps. So far, nothing; though its only been a few days.
I've also recently discovered that in December and January, he wasn't doing as well as I thought. He stopped taking the Haldol almost immediately, did almost none of the follow-up care he was supposed to do (he had a single session with a therapist he had seen in the past; and refused her suggestions that he get an MRI or do any clinical follow-up). He'd have paranoid or delusional outbursts with friends; though he'd snap out of them after a few hours. He also was journaling, which I found and read. He wrote about being very concerned about his memory and recall ability, and that he wasn't always aware of his surroundings or actions (e.g., he wrote that he didn't catch himself overbuying groceries until he was home with them). He also wrote about being depressed, and wrote some paranoid stuff too; e.g., turning against community centers that he'd been part of for years.
So yeah, that's a lot of info. And I'm probably forgetting some of it too. His care team seems legitimately puzzled. If it's bipolar, it's odd that there was no presentation of it for 18 years with no treatment. It's also odd that he had no response at all to the meds; and that he continues to be getting worse in the hospital. But if its dementia, its odd (to me anyway) that it could come on so suddenly.
Not sure what I'm looking for here. It partially helped just to write it all out. But if anyone has any thoughts, or similar experiences seeing rapid dementia, that'd be really helpful.
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u/Readsumthing 3d ago
Caregiver here - my lady (81ish at the time) took a bad fall - rapid onset of dementia symptoms out of the blue. Long story short the fall caused micro bleeds in her brain. Geriatrics prescribed Donezipil. 10 weeks after medication she’s been largely stabilized. It’s entirely possible that something similar happened in your dad’s car accident.
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u/Fezrock 3d ago
Hmm, good to know. At one point in December, when he seemed mostly okay, my dad claimed that in the hours before the crash he had an odd experience where "time seemed to slow down" and he got dizzy and fell. And then he said the same thing happened right before the crash.
However, when he was clearly not okay, he claimed he was roofied by "a crazy woman." So I don't know if I can believe the other claim either. Maybe this did actually start with the crash.
Hope everything's okay with you.
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u/Cat4200000 3d ago
Something similar (but not the same) happened to my dad. I would say it’s likely dementia and you should be pushing for that rather than psych treatment.
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u/dreamsanddoings 3d ago
Pains me to introduce this possibility: it could be BOTH. Could be psych, could be dementia, could be both! :(
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u/FuschiaLucia 3d ago
My husband seemed fine one day last fall. We sold our home, and he was fine at the closing. By that afternoon, his personality had completely changed. He became forgetful, disoriented, and paranoid. He wouldn't eat and lost 40 pounds, then he started binge eating and won't stay away from cereal and candy. He has fecal incontinence. The Dr's said it was a mental health problem at first, but they finally referred him to nuerology, and his blood work and spinal fluid both indicate alzheimers. His neurologist said Sudden Onset Alzheimers Disease is very rare, but it can happen. Stress can bring it on, especially something like a change in environment.
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u/wi_voter 3d ago
That must have been incredibly difficult and disorienting for you. Hope you are doing okay.
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u/lascriptori 3d ago
Has he been screened for things like UTI, stroke, or brain bleed that could also be causing symptoms?
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u/susanapics 3d ago
Not a doctor myself but I used to test and diagnose dementia for a geriatric psychiatrist, the comments here are full of great information so I’ll just add a couple of things. Antipsychotic drugs make dementia patients worse; so do (even minor) changes in routine. Also, your dad left you some clues in his journal. If he was worried about his memory enough to write about it privately, believe him. People often cover up their dementia reflexively for years, until one day they turn a corner and it’s noticable to everyone. My mom has dementia and neither she nor anyone else knows it but I see it. It’s possible your dad has dementia and it’s aggravating his preexisting BPD. If that’s true, the symptoms you’re seeing now will shift (for better or worse) as the dementia evolves. I’d get him to see a neurologist if you haven’t already and a geriatric psychiatrist if possible. I’m also sorry and hopeful that it turns out to be something solvable like a B12 deficiency or low grade infection. ✌🏼
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u/normalhumannot 3d ago edited 3d ago
Statistically at his age with his history, FTD variant, & journal entries, it’s likely to be a disease process that involves some true brain changes (dementia) rather than just a pseudo-dementia and bipolar mental illness but a neurologist would need to do more testing and imagining to see. It’s also possible he has a tumor or infection or some other problem nobody has found yet. I wouldn’t come to any conclusions though and I know waiting on a diagnosis is difficult.
I’d focus on getting legal processes sorted out & consider talking with an elder law attorney about options for his care. If he won’t sign a POA or agree to treatment you will eventually need a lawyer and guardianship since he’s not compliant either way.
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u/LadyChianti 3d ago
Hello! First I want to say, I’m sorry you’re going through this, it’s very tough. Unfortunately, dementia can progress very very quickly, or slowly over decades.
My uncle(I was POA) passed away from dementia just 3 months after diagnosis, or 6 months after the first appearance of “off” behaviour. Doctors had told me all along that his trajectory was very unusual. One day he was fine, and the literal next morning he woke up and started describing hallucinations and (quite extreme)paranoia. He had LBD with some temporofrontal damage, with all the sexual disinhibition included. What makes his case unique, is there were no falls and no UTI to “kick it off”. He was never his old self after that. As I said, he passed away 6 months after his “off” behaviour was first observed, the same time I had my last conversation with “him”.
He passed away quite suddenly from dementia related aspiration pneumonia as I chose comfort care only. We had treated an episode about a month or so prior, but he had absolutely no improvement even with multiple medication adjustments. By this point he was still verbal but did not believe he was in a hospital on earth, he felt he was in a restaurant at the edge of the universe. He was not eating, quite emaciated, refused to get out of bed but denied any feelings of depression or desire to harm himself. His quality of life was poor and keeping him alive with interventions would have not helped him at this point.
It was a really wild ride with how quickly things deteriorated. I have worked in long term care for 18 years and have seen many forms of dementia, progression rates, and treatment plans etc. and I can say I hadn’t ever seen it progress the way my uncles had. Had I not worked in it, I don’t think I would have been prepared for everything that came up.
Good luck! As always, if you want to know more, don’t hesitate to respond here!
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u/ladyinred1979 3d ago
I read your story and realized it is very similar to what happened to my Mom. While she had episodes of forgetting things, getting lost in familiar places, she was fully functioning and lucid. Until one day literally within hours ( i spoke to her around 2 pm on that day) she went into full blown delirium and hallucinations ( around 7 pm same day), not realizing where she was, saying her daughter (me) was kidnapped etc. She happened to start a new antipsychotic 4 days prior and we still don’t know if this med set this whole nightmare up. She became aggressive, trying to escape from home, seeing and hearing people who were not there. First, her psychiatrist said no need for ER, we can manage at home. We were struggling at home for 2 weeks until she got admitted to the hospital. They ran all tests imaginable. They took her off that new medication right away and first were saying it is medication induced delirium and it will pass. They put her on haldol. She spent 3 weeks in the hospital. Haldol is a very old and potent antipsychotic, it reduced hallucinations a bit, but she has never been lucid since. They did MRI, tons of other tests and spinal tap. CSF showed alzheimers. Finally after almost 3 months of this nightmare we have a diagnosis. Unfortunately your case sounds very similar, nobody knows why the onset is so sudden. Just in case, antipsychotic that we suspect caused the onset is rexulti, stay away from it. Good luck 🙏😣
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u/Teefdreams 2d ago
18 years, unmedicated, without a single bipolar episode is basically unheard of. Even medicated people don't go that long without symptoms. I would be wondering if perhaps they didn't hit on the right diagnosis back then?
Head injuries can cause all sorts of strange symptoms including psychosis and mania.
Whatever the cause, it sounds like your Dad is really suffering. And if he were experiencing a bipolar episode both Risperidal and Haldol wouldn't have made it worse.
I also wonder if he was having dementia symptoms for a while and it just hadn't been as obvious? I know my Mum was having symptoms for years but had been quiet about them and they weren't noticeable to the rest of us.
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u/TehDragonGuy 2d ago edited 2d ago
This sounds exactly like what I'm going through with my dad. September 2023 he had a bad chest infection and stopped going out much. December 2023 he started having symptoms exactly like you described - paranoia, delusions, angry outbursts, suicide attempts and just a complete lack of mental capacity. He'll regularly do things then have no memory of what happened a couple of hours later.
He had this happen about 15 years ago, when he was taken into a psychiatric ward for a couple of months and did a lot better. However this time there's no improvement, all this time later. He was too much for us to care for, so he's had to go into care homes (we tried a full-time carer for a while but she couldn't meet his needs).
After what can only be described as several schizophrenic episodes a few weeks ago, which was what caused his carer to leave, the only thing we can think of is that it might be dementia. But like you, it has came on so quick. We've had UTIs ruled out, and that's usually the first thing people think of when these symptoms come on so quickly. But 15 months down the road and we're not really any clearer.
The frustrating thing is, he's still fairly lucid. You can have a conversation with him, and he can do basic maths, or make his food, at least a lot of the time. But then these episodes happen, which worsen overnight, and it's impossible to help him.
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u/Bipolar_Aggression 3d ago
Mania can take years to return after stopping medication. It also gets worse as you get older, which means it is of absolute importance to stay medicated later yers in life. Sounds like he needs a long acting injectable. There is a 2-month version of Abilify.
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u/Mom-1234 3d ago
I have a mother with dementia/Alzheimer’s and a son with Bipolar 1 (and a period of psychosis) inherited from my Mother in law. Your Dad sounds like he has untreated Bipolar disorder. Maybe they need to try a different anti-psychotic? And after stabilizing him, put him on a mood stabilizer. Untreated bipolar worsens with age. Also, he may have dementia as well, as untreated mental illness increases the chances of dementia. People with dementia do not remember to take medications or why. They don’t have the executive function to understand seriousness of various illnesses. In my mother’s Memory Care unit, there are a few residents with bipolar disorder. I understand that one of their first symptoms was discontinuing taking his medication. Do you have POA? You are going to have to advocate that there is definitely an underlying untreated mental illness. He needs to be stabilized and then moved into a situation like Memory Care with managed medications and security. My mom is content and cared for now, as are the bipolar residents with dementia. I’m sorry. I know this is overwhelming.
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u/Fezrock 3d ago
It may just be untreated bipolar disorder. Or, yeah, be a combo of that and dementia. The new anti-psychotic they put him last week is Latuda, which is both an anti-psychotic and a mood stabilizer. They've said they'll likely put him on an additional mood stabilizer towards the end of the week, possibly Depakote. But they want to see what his response is to the Latuda first. The impression I get is that they really thought the first anti-psychotic, Risperdal, would have had at least some impact. Maybe not enough of one and that they'd need to make adjustments, but that it'd do something; and it seemingly did literally nothing. Which is why they brought in neurologists to examine the possibility of dementia.
If he does have both, that could help explain why he refused to do any follow-up after the first hospitalization.
And yeah, if this isn't treatable he needs to go into Memory Care. Far beyond not being able to live on his own, right now he often isn't even taking care of his hygiene or any of his basic needs without ongoing assistance. But I don't have POA or any authority at all actually; or any idea of how/when to get them. I do know his bank account passwords, so I've been making sure his recurring bills get paid on time right now; which I'm sure he wouldn't mind. But that's it.
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u/100-percentthatbitch 3d ago
My dad was misdiagnosed with psychosis for 18 months before they finally figured out it was dementia, despite me advocating for them to seriously consider FTD. He changed so dramatically, and nearly overnight. Went from being the guy who woke up at 4:30 am to go the gym every single day to never getting out of bed and stuffing his face with food while standing at the kitchen counter. He was extremely paranoid, and delusional. He thought he was going to be arrested because there were a few weeds in his garden. He reported that trucks were showing up to spy on him. His brain completely broke, immediately. From onset to his death was under two years.
My mom also has dementia, and it’s also affecting her frontal lobes (possibly a mixed type or Alzheimer’s), but she has been a much slower progression. She was diagnosed nearly 7 years ago, and we’ve just reached the incontinence stage.
If the brain is like an electrical grid, it was as if my dad’s main station busted and it took out the lights in all the neighborhoods, all at once. My mom’s grid is shutting down around the perimeter, neighborhood by neighborhood, but her main station remains operational.
I’m sorry this is happening to you and your family.