Very rapid onset of Dementia

[Carolyn B]

Hello, I am new to this forum so bear with me. I am posting as I just can' find any posts that describe what has happened to my mother. She has gone from no apparent Dementia to stage 4-5 and in a care home in two months

I will try and condense what has happened. In January 2018 she got run down. She is 81 and has mobility issues after both hips replaced. She lived with my husband and I. I helped her with shopping, cleaning, appointments. But otherwise she was independent had her own living room read watched TV. She did her own finances knew her PIN numbers, paid bills on time no issues.

On 30th January I noticed some odd behaviour. She left me a note, not unusual but it made no sense. I asked her about it she said she didn' remember why she left it, just ignore it she was tired. To cut a long story short. She got very confused. She ended up in hospital a few days later. Her sodium had dropped to 20% which sends anyone potty. This was due to her meds not being reviwed. She was admitted to hospital, after a few days she actually seemed back to normal personality wise.

The next day I went to see her she was really confused. No idea what day it was. Saying things that couldn't possibly be true. Fast forward a few days and she also has a urinary tract infection. They told me she had delerium and it takes time to clear. She came home with carers in place.

She didn' know what day it was. No concept of time. Couldn't recall numbers dates of birth of close family members. Unable to make a cup of tea, use the microwave. Couldn't get dressed because she couldn't remember the order clothes went on. She seemed to improve slightly. We ended up back in A&E after one episode the GP thought her sodium had dropped. It hadn' brain scans were mentioned but no referral.

Four weeks later an Occupational therapist did a memory test. He said it was pretty certain to be dementia.

She declined a bit. Wasn't sleeping up in the middle of the night emptying drawers. Switched the oven on. The last two weeks we tool it in turns to stay with her. It just wasn't safe to leave her.

We are self funding so I set about finding a care home. She agreed as in her lucid moments she saw we just couldn't keep her safe. We found a nice small care home near where she grew up.

So that' it so far. Still awaiting brain scans, memory clinic. No health care professionals so far have disagreed it' anything else. They said her behaviour is typical.

So my theory reading as much as I can, is Vascular dementia brought on by a double whammy of low sodium and UTI.

Any thoughts or similar experiences.

 

[Mudgee Joy]

Dear CarolynB
My H went from zero to level 4or 5 in a few weeks after getting a UTI, then flue , then heart attack.
A great shock -he couldn’t dress , he was confused, incontinent etc
But thinking it over I realise he prob had D for a few years at a very low level - the thing is - the worst effects were caused by delirium!!
The person who is susceptible to this dementia effect will improve a lot if you can get them germ free - 9 months later my H still certainly has D - but at a more manageable level - maybe 2 or 3- But of course I am better at it too !! Managing that is .
So you need to get her well ASAP and keep her that way - away from UTI and flue etc
Keep hopeful and all the very best !

 

[canary]

Im guessing that she probably had just the beginnings of dementia, but it was so early that it wasnt noticeable, before all the problems started.
Unfortunately it is very common for things like pain, shock, infection (of any sort), anaesthesia, hospitalisation and delirium can all advance dementia - sometimes very quickly. Delirium in particular causes havoc. Quite often they can improve from delirium, but they very, very seldom get back to their original level and sometimes there is very little improvement at all.

My MIL didnt seem to be showing signs of dementia, but then she had a fall and fractured her spine, got a UTI and delirium and went into a care home - all within 6 months. It was a shock.

 

[karaokePete]

Hello @Carolyn B, although it is a traumatic set of events that has brought you here you are welcome and will find understanding and support.
I can't add much to the good advice that has been given already. All that I can add is that a search for 'rapid onset' will throw up a lot of previous posts about this subject and you may find useful information or some solace in those. An example can be seen by clicking this link https://forum.alzheimers.org.uk/posts/1509169/

 

[Jessbow]

Have the GP check her urine again.

 

[Carolyn B]

Hi, thanks all so much for your replies. I did search rapid onset in various ways but nothing came up. But I only registered today to post this thread so not sure if that's why it didn't come up. I will have a read thanks.

She has had four UTI tests since leaving hospital oriinally. I am certain it has gone. She's had both blood & urine tested. So I think everyone is satisfied she's clear of a UTI. I believe the care home do the test themselves as well if they suspect it. I was told by the GP about the risk of infection in dementia patients as I hadn't been aware.

I now feel that the hospital treated the physical issues and didn't want to say to me "actually it could be dementia". That's why we haven't yet got a diagnosis as I was waiting and waiting for her to recover. Apparently in hospital she scored well in the Memory test. That makes me think it was the UTI that sealed her fate. I noticed a massive decline in hospital after her initially seeming to recover well.

She seemed to pick up a bit after leaving hospital. I went off work sick with stress. After a few weeks my husband said I couldn't see it but she was getting worse. Because I was with her all the time. I was desperately trying to see an improvement and hoping with carers I could go back to work.

Some of you sound like you have had it worse than us. I know it is an unpredictable illness. Because she is in a care home in a different NHS area I am having to go through the whole process again to get a diagnosis. She's not far away but unfortunately it comes under a different area

 

[lemonjuice]

As has already been said, infections & hospital stays can all 'fast forward' any symptoms and although she may have been functioning' well beforehand that doesn't mean to say that the dementia wasn't there.

My mother about stage 4 went into hospital and rapidly deteriorated to stage 7. It took a good 4 - 6 months in a Care Home for her to 'regain' her capacity to pre-hospital stay levels.

 

[Carolyn B]

Yes she had a double dose. Low sodium can cause death and affects the brain. They said had it gone much lower she could have gone into a coma. Then the UTI on top of that.

My father also died of cancer 18 months before she became ill. He was six weeks from diagnosis to death. So that was a massive shock to us all. Most dates she's forgotten but she hasn' forgot the date he got his terminal diagnosis. He was very fit and healthy and no one expected him to die first.

 

[Mudgee Joy]

How does the “low sodium” come about ??

 

[lemonjuice]

How does the “low sodium” come about ??

Usually causes include diuretic use for heart failure, liver or renal disease but can be something as simple as diarrhoea.

 

[Carolyn B]

How does the “low sodium” come about ??

She was on Ramoprill (?) which I think is for high blood pressure. She lost weight after my father' death. She was slightly overweight so she dropped into a healthy weight range. But she was on double the statin dose for someone her weight. But the Ramoprill caused the low sodium. Looking at her blood test from 12 months previously the sodium had dropped gradually. That sent her really potty. She was hallcinating, didn' know she was at home, didn't know where the bathroom was. It's dangerous to just stop taking the Ramoprill.

I honestly think whilst they were trying to sort the meds in hospital she's had a TIA. Her blood pressure was up and down they did ECG's every day. She seemed to go ok then they found she had a UTI as well. That' coming up for ten weeks ago now. I think she's at a plateau now. No matter what anyone is saying I don' think she will get much better. Her short term memory is pretty much none existant.

 

[Mudgee Joy]

My husband is on Ramopril !! Should I ask the doctor for an alternative!? MJ

 

[Carolyn B]

It's just a side effect. But regular blood tests would show up sodium deficincy. I think it's quite rare. We were just unlucky

 

[Mudgee Joy]

Another drug my H is on is a beta blocker called metoprolol- a side effect is vivid dreams or nighmares - I guess the sundowning isn’t caused by it - but I’m suspicious it might make things worse. Ah - so much to worry about !!

 

[Carolyn B]

You can't win either way. I feel like my mum may have died of natural causes before dementia took hold if her meds had been revised. But I will never know. She's on far less meds now than she was. But that may change when we get a diagnosis.