Delirium or dementia?

CarlW

Registered User
Apr 10, 2019
11
0
Has anyone had experience of this? My aunt has had delirium for the last 10 weeks after being admitted to hospital with a UTI. She is 75. Before the delirium she was having tests for dementia, but was never formally diagnosed as the brain scans were inconclusive.
She has been discharged from hospital and is now in a care home in a section for dementia patients. The delirium hasn't improved - she recognises visitors, but has visual and aural hallucinations, paranoia and is usually incoherent. She has no idea that she is in a care home. She also had a fall in hospital and is now unable to walk. Basically she needs 24 hour care. It's as though she went from having mild to advanced dementia overnight.
Has anyone else seen anything like this? Is it delirium or dementia or a combination of the two? Nobody seems to have an answer, just that she 'might' recover.
Thanks for reading if you got this far!
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Hello @CarlW and welcome to Talking Point

Infections frequently cause delirium in elderly people, particularly when they have dementia - even if it is very early stages.
Delirium can take up to 6 months to resolve, but often it progresses the dementia, so they dont get back up to the level they were at before and sometimes it hardly improves at all - the dementia is then significantly progressed.

I know it doesnt seem like it, but your mum is still in quite early days in the delirium and there is, unfortunately,no knowing what will happen. It is a waiting game, Im afraid, with the possibility that she might get back, mostly, to where she was before.
 

CarlW

Registered User
Apr 10, 2019
11
0
Thanks canary, that's what I thought. 10 weeks feels like a long time though!
 

LynneMcV

Volunteer Moderator
May 9, 2012
6,110
0
south-east London
Hi @CarlW, I am sorry to hear that your aunt is going through this and the worry it is causing you. Delirium is a distressing thing to both go through or witness.

In my late husband's case, his dementia was already greatly progressed before he was admitted to hospital with delirium. It developed within a matter of hours, so we knew it was separate from the dementia itself.

I had just about been managing to care for my husband at home prior to this sudden onset of delirium - but after it took hold his needs became too complex and he never improved. We had to start making preparations for a nursing home.

I was told that people often do not return to their pre-delirium abilities - but that is not to say that nobody does. It is good that your aunt is in a care facility already as, if it is anything like my husband's case, round the clock care was essential.

I also know that in some cases a person will not have a diagnosis of dementia when they go into hospital, but that having delirium can unmask the dementia.

You will find some information about dementia and delirium on the following link, which might help -

https://www.alzheimers.org.uk/get-support/daily-living/delirium

I wish you well and hope that you see some improvement in your aunt before much longer.
 

Redjen

New member
Mar 22, 2018
5
0
I experienced similar, my mum had what we assumed was lingering mild delirium after a heart attack, but no previous suggestion of anything dementia-like. A second hospital admission for a relatively minor fall immediately set off what was essentially the full progression of dementia, over about 16 weeks.

Like LynneMcV said, I think there must've been some previously unnoticed dementia of some sort that the delirium unmasked.

They do say delirium can persist for up to 6 months though so there's still time for your Aunt to possibly make improvements. I think the hardest part is not knowing the cause and what to expect, as I know docs are very reluctant to make any sort of prognosis about potential dementia while they are actively delirious. We found the 'not having an answer' very frustrating.
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,258
0
High Peak
The drastic change you experienced was similar with my mum. I'd suspected/known she had dementia as things had been getting worse for at least 5 years. (Probably nearer 10 years looking back to the first 'symptoms'.) But mum was managing and was living independently, albeit a pretty simple and routine life. She was otherwise healthy so no diagnosis. Then she fell and hit her head getting off a bus and was hospitalised. There was no acute bleed though her (small) head wound got infected and she subsequently developed a chronic sub-dural haematoma.

But from the first moment I saw her in hospital I knew she was drastically changed - talking about her parents, had forgotten my children, etc. It could have been delirium. Or maybe she had a TIA that caused the fall and the drastic downturn - I don't know and never will.

Unfortunately she did not improve, not even slightly. I moved her from hospital to a CH as it was clear (to me, if not everyone else involved!) that she needed 24 hour care. Two and a half years on, she's worse of course - I'd say she's late stage 6 now.

So, yes, drastic change can happen though in mum's case the exact cause remains uncertain.
 

CarlW

Registered User
Apr 10, 2019
11
0
Thanks for your replies, they have been very helpful. It helps to know that others have had a similar experience even though the outcomes were not good. I think that she did have mild dementia before going into hospital, so unfortunately it probably has been accelerated by the delirium. We will just have to see what happens - it certainly is very frustrating though! Thanks again.
 

Moose1966

Registered User
Feb 10, 2017
147
0
Staffordshire
The drastic change you experienced was similar with my mum. I'd suspected/known she had dementia as things had been getting worse for at least 5 years. (Probably nearer 10 years looking back to the first 'symptoms'.) But mum was managing and was living independently, albeit a pretty simple and routine life. She was otherwise healthy so no diagnosis. Then she fell and hit her head getting off a bus and was hospitalised. There was no acute bleed though her (small) head wound got infected and she subsequently developed a chronic sub-dural haematoma.

But from the first moment I saw her in hospital I knew she was drastically changed - talking about her parents, had forgotten my children, etc. It could have been delirium. Or maybe she had a TIA that caused the fall and the drastic downturn - I don't know and never will.

Unfortunately she did not improve, not even slightly. I moved her from hospital to a CH as it was clear (to me, if not everyone else involved!) that she needed 24 hour care. Two and a half years on, she's worse of course - I'd say she's late stage 6 now.

So, yes, drastic change can happen though in mum's case the exact cause remains uncertain.
Absolutely agree with my mum 84 active , driving , living alone and healthy! Generally we’d noticed a slight change but put it down to old age then she fell down full flight of stairs nothing broken but from then on .......hospital , rehabilitation for 6 weeks as her mobility was bad , back into hospital with UTI’s , discharged to a psychiatric unit for assessment then received diagnosis of Alzheimer’s . She came home for 6 weeks with caters but didn’t improve at all , advised to admit to CH for safety as 24 hour care needed due to paranoia. Two years on she’s frail , bedridden, legs contracted so unable to sit , not able to feed , end of life pack in place and to finish had to move her on Monday into a Nursing home as palliative care team felt care home were unable to meet her needs ☹️. What a rollercoaster and we just never saw it coming , still can’t believe how awful it’s been . It’s early days in NH but she coped with the move and it’s a beautiful home. I’m happy that we did it and hopefully she is comfortable. I hope that you are coping it is so sad to see them change quickly without warning . Any questions please ask away I think I’m a stage ahead of you ❤️
 

CarlW

Registered User
Apr 10, 2019
11
0
Thanks @Moose1996. I'm very sorry to hear about your mum, I hope she is comfortable and well looked after.
 

Moose1966

Registered User
Feb 10, 2017
147
0
Staffordshire
Thanks @Moose1996. I'm very sorry to hear about your mum, I hope she is comfortable and well looked after.
Thank you , please use this site it is very useful if only to help you know that you are not alone . It’s hard seeing a loved one suffer but on here we all have our own story to tell , sometimes when your troubled with negative thoughts and feeling very lost wise words can be found here . Fingers crossed for your aunt that you find answers that will help you to make choices for her best care .
 

CarlW

Registered User
Apr 10, 2019
11
0
I thought I would update this thread, although nothing has changed for the better. My aunt still has the delirium, although some days have been a bit better. She has had repeated UTIs which have set her back each time, but she was regaining mobility which was good, despite being diagnosed with a dropped foot. Unfortunately she then fell over and broke her hip. She is now back in hospital, and we are back to square one.
I'm so disappointed with the care home. I know that accidents happen but it's infuriating, especially as she was just learning to walk again.
 

Alibunchy

Registered User
Jun 3, 2019
12
0
I thought I would update this thread, although nothing has changed for the better. My aunt still has the delirium, although some days have been a bit better. She has had repeated UTIs which have set her back each time, but she was regaining mobility which was good, despite being diagnosed with a dropped foot. Unfortunately she then fell over and broke her hip. She is now back in hospital, and we are back to square one.
I'm so disappointed with the care home. I know that accidents happen but it's infuriating, especially as she was just learning to walk again.
Unfortunately hospital just makes the delirium worse. My Dad came home 4 days ago after 9 weeks in hospital . He was admitted with acute delirium after he called me late one night distressed at the things he was seeing. He was hallucinating all night and scared my sister and I half to death. My Mum had passed away about 6 weeks before and like you we has suspected he was showing signs of dementia but with my Mum being ill we had let it ride as he seemed to be managing ok. Turns out he was forgetting to eat and even go to bed. The whole time he was in hospital he thought he was at work. He even thought the beds were vehicles and swore he had driven them all night. He is now at home on a trial run with Carers 3 times a day. This unfortunately means there is no one with him from 12pm until 9 pm with no supervision at night. He likes to wander around and my sister and I are worried sick he will be awake all night again, end up with the delirium back (not sure it’s even gone) and he’ll be in hospital again. We both feel he will never be back to the level he was before he went in. He has now been diagnosed with Alzheimer’s. We feel that his decline has progressed so fast, it’s hard to deal with at times.
 

Max68

Registered User
Aug 21, 2018
178
0
Sussex
Going through this with my mum (hence my long thread in this category!) Mum was at home no more than 8 weeks ago and had been diagnosed with Mild Cognitive Impairment back in February after tests in October. She was however declining but no one wanted to see her again until October! It was ridiculous. Then a gastro problem put her in hospital where she picked up delirium and her mental abilities have fallen off a cliff. She was moved to a Dementia Ward closer to home and this was after the original hospital said they wouldn't move her because it would be too confusing!! At the moment she is living in a different decade every day and is convinced some sort of espionage is taking place in the ward. The problem we have is that despite having now a Mental Capacity Statement and use of LPA's a lot of utilities are refusing to co-operate because she only has a diagnosis of MCI whereas it doesn't take a rocket scientist to see she has dementia. Spoke to yet another Doctor today and asked as to why everyone says that she needs specialist dementia care in a nursing home but no one (hospital of GP) will take responsibility to give a confirmed diagnosis. It's as if everyone just washes their hands of the responsibility. And there is the crux of the problem is it mild dementia "with" delirium or is it severe dementia due to the delirium progressing it. So they are waiting for the delirium to subside but no-one knows if it will so when do they accept that the delirium has passed and it is just dementia because there is no specific test for delirium?! It's a nightmare you have all my sympathies.
 

CarlW

Registered User
Apr 10, 2019
11
0
Thanks for your reply, Max68. I have just read through your thread - I'm sorry that you're going through this too. We are in the same situation as you re the diagnosis. You hit the nail on the head with this:

And there is the crux of the problem is it mild dementia "with" delirium or is it severe dementia due to the delirium progressing it?

I suppose we will have to wait and see, but it is indeed a nightmare :(
 

CarlW

Registered User
Apr 10, 2019
11
0
Unfortunately hospital just makes the delirium worse. My Dad came home 4 days ago after 9 weeks in hospital . He was admitted with acute delirium after he called me late one night distressed at the things he was seeing. He was hallucinating all night and scared my sister and I half to death. My Mum had passed away about 6 weeks before and like you we has suspected he was showing signs of dementia but with my Mum being ill we had let it ride as he seemed to be managing ok. Turns out he was forgetting to eat and even go to bed. The whole time he was in hospital he thought he was at work. He even thought the beds were vehicles and swore he had driven them all night. He is now at home on a trial run with Carers 3 times a day. This unfortunately means there is no one with him from 12pm until 9 pm with no supervision at night. He likes to wander around and my sister and I are worried sick he will be awake all night again, end up with the delirium back (not sure it’s even gone) and he’ll be in hospital again. We both feel he will never be back to the level he was before he went in. He has now been diagnosed with Alzheimer’s. We feel that his decline has progressed so fast, it’s hard to deal with at times.

I don't know if the delirium is worse in the hospital or the care home to be honest. It seems to be a continuous thing that isn't getting any better. My aunt often talks about vehicles, too, generally trains and cars. I've no idea why. She hates trains in particular!
I'm sorry to hear about your dad, that sounds very stressful. It's very hard to cope with such a sudden decline
 

Max68

Registered User
Aug 21, 2018
178
0
Sussex
I don't know if the delirium is worse in the hospital or the care home to be honest. It seems to be a continuous thing that isn't getting any better. My aunt often talks about vehicles, too, generally trains and cars. I've no idea why. She hates trains in particular!
I'm sorry to hear about your dad, that sounds very stressful. It's very hard to cope with such a sudden decline

It's interesting you say that actually because whilst in hospital mum has been talking about making sure we don't forget the train tickets. Think the last time she went on a train was 30 years ago! Maybe it's all about travel to get away from wherever they are, how to get home so to speak. She also says various families we have known over the years, although not particularly well, are taking over the hospital, all very espionage ish.
 

CarlW

Registered User
Apr 10, 2019
11
0
Just to update this thread... my aunt has been diagnosed with dementia. She is now out of hospital and in a new care home, which is better than the old one. Unfortunately she has not recovered well from the broken hip and isn't as mobile as before. She has also had several aggressive episodes and is generally awake most of the night. So, unfortuanately it looks like the delirium accelerated the dementia. Looking online, I'd say she is already stage 6 now, so I will be moving over to the other forum. Many thanks to everyone who replied to this thread, your advice and experiences were more useful than anything else out there.
 

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