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Rapid onset dementia? Sudden changes in personality and behaviour

Eaexh01

New member
Jul 6, 2020
9
My mum has been physically ill for most of lockdown with various conditions, causing several hospital admissions.
She was admitted last time as she was slurring and felt shaky but this was attributed to diabetes and low blood pressure. Whilst she was in the hospital she had what the considered to be some 'mild seizures' but a brain scan showed nothing abnormal.

However, from that point all I can say is that my mum was 'changed'. she was discharged home under with a care package but she just didn't seem the same. She would not comply with what she needed to do, would aimlessly wander fiddling with things and making a mess, but more seriously had some falls when trying to mobilise by herself.

She was sent to a nursing home last week for respite where her behaviour severely deteriorated. She had managed to smuggle scissors in with her and slashed her arms, then she wrapped a bandage around her neck. She became increasingly confused and paranoid about the staff and just kept saying she wished was dead. Would switch between being pleasant then hugely aggressive. I had daily calls from the home telling me how concerned they were and they finally called an ambulance when she had thrown herself out of bed three times.
The GP suspected a UTI and constipation.

So she has been in hospital since Thursday and gets worse by the day. I have visited daily and cannot recognise the woman who is laying in bed. She barely recognises me, is utterly confused, paranoid and scared. She is aggressive to everyone and accusing the poor male nurse of the most dreadful things. She shouted at me today that she hates me and just wants to die. I just don't know what to do or think; it's heartbreaking
The tests have shown no UTI and she is no longer constipated. Her liver function bloods were slightly elevated so she is due a liver scan and a referral has been made to the psych team.

Dementia is being mentioned but how on earth can it be this extreme and this rapid with no previous symptoms? I can't help but think that this confusion and psychosis must have a physical cause from when she was last unwell but the hospital don't seem to be taking it that seriously. Mum has been prone to low moods in the past but absolutely nothing on this scale and I feel like I'm losing her. Can dementia hit this quickly and this hard?
 

Louise7

Registered User
Mar 25, 2016
2,258
Welcome to the forum @Eaexh01 The situation must be really worrying for you. There are a number of things that can cause a sudden change in behaviour so these will need to be ruled out to get to the cause of your mum's sudden change. Has pain been considered? My mum had a sudden change in behaviour and it took 8 months to discover that it was caused by pain. The hospital put the change down to delirium, the GP tried an anti-psychotic and the mental health team tried various different medication, none of which had much effect, but providing effective pain relief finally resolved the problem. If your mum isn't on any pain relief at the moment then it's worth considering. You may find this fact sheet about changes in behaviour helpful, and keep posting as there is a lot of advice and support here.

https://www.alzheimers.org.uk/about...gnosis/symptoms/what-causes-behaviour-changes
 

Eaexh01

New member
Jul 6, 2020
9
Thank you for your replies and the link. Mum has always had quite a high threshold for pain and apart from a current flare up of RA in one arm (which is being treated with steroids and pain relief) doesn’t seem to be in any other pain.

I find myself half hoping the scan does show a problem with her liver because at least that would give something to account for the deletion. That or something obvious from a brain scan.
 

lemonbalm

Registered User
May 21, 2018
406
This is very distressing for you @Eaexh01 . My mother often gets into this state but her vascular dementia is pretty advanced and she is quite aggressive and volatile by nature.

When mum was in hospital years ago, when her dementia was early stage and not even diagnosed (firstly for a hip replacement and then following a stroke), she was suddenly like a wild animal. Perhaps your mum's sudden change in personality could be a result of delirium from the hospital treatment she has had over the past few months. This can last for varying lengths of time.

I also wonder if the steroids may be to blame if they are recent medication. I have read that some steroids can induce psychosis.

Mum's existing dementia became much worse after a stroke. I suppose it is possible that your mum has had some TIAs which probably wouldn't show up on a brain scan.

I hope you find out a physical cause which can be easily treated.
 

Eaexh01

New member
Jul 6, 2020
9
Thank you, I am visiting Mum this afternoon so will see how she has been in the 2 days since I’ve seen her.
No update from doctor or psych team but I’ve been told she’s been refusing her medication. Still no liver scan.
Wish the psych team would get more on with it, am wondering if she now needs to be sectioned and put in a more appropriate ward.
This has been going on since at least last Wednesday and it seems nothing is being done to help or settle her. It’s exasperating
 

lemonbalm

Registered User
May 21, 2018
406
It makes me angry how poor hospitals in general seem to be at coping with distressed patients. Will be thinking of you this afternoon and hope that progress is made very soon.
 

Eaexh01

New member
Jul 6, 2020
9
So I saw her this afternoon, still no psych assessment.
In the meantime she is refusing meds, not eating or drinking and totally confused. I have requested updates several times today but nothing.
I just don’t know what to do - it’s like no one cares how bad she gets
 

Hazara8

Registered User
Apr 6, 2015
486
So I saw her this afternoon, still no psych assessment.
In the meantime she is refusing meds, not eating or drinking and totally confused. I have requested updates several times today but nothing.
I just don’t know what to do - it’s like no one cares how bad she gets
This can be extremely distressing and frustrating. It is clear that underlying problems or causes exist. Whether delirium , diabetes or pain generally or UTI's, infections, pneumonia , thyroid problems - the list goes on - if dementia is present then any of these can exacerbate behaviour which seems wholly uncharacteristic in the one you know intimately. So assessment is paramount. But what is not so evident it seems, is the fact that the hospital environment can very often prove detrimental to the one living with dementia, because procedures and the environment as a whole can be confusing if not threatening. This is when such initiatives as say the "butterfly scheme" if operating on the ward can be very helpful.
My late mother went through the whole spectrum of neurological behaviours as her dementia (mixed) progressed. It is the CARE in these situations which must always be seen as fundamentally in place. Even the most highly qualified in neurological research or indeed in the clinical applications available, must bow to the salient truth that the brain remains extraordinarily complex and challenged with dementia, a mystery as yet unresolved. Therefore CARE /COMFORT are absolutely essential whilst the course of assessment takes place. One often feels that the expression of dementia or psychological disturbance is accepted as just that and appropriate medications will, for now, alleviate the problem.

Having cared for my late mother even prior to her diagnosis of Alzheimer's and vascular dementia , l knew that when she was admitted into hospital at end of life, l would need to remain with her. This l did for the month which followed. Whether bed turning, washing, taking blood etc., l would be at her side in order to administer " comfort " day or night. It had a marked effect, despite the dementia, in as much as the nursing staff found they could carry out their procedures without arousing anxiety nor upset on my mother and on the occasions when l simply had to return home, left my " voice" on a mobile device for her to hear as if l was actually present. The nurses were astonished.

I am saying all of this because l understand from the heart how it feels to witness a parent - a mother - subject to a disease which has no quarter, no heart, not a care for its victim and which reaps havoc in a mind which once flourished so sweetly and was loving and active and full of fun. There is no magic wand, but we CAN be aware and we CAN apply COMFORT if we understand the nature of this disease. That goes a very long way in diluting anxiety and distress in ourselves let alone our loved ones.

There are, thankfully, many voices on here who will testify to the " reality" of dementia without sentiment nor self pity, but a spirit of goodwill even when confronted by overwhelming heartbreak. That alone must be a source of " comfort" when all seems so helplessly lost amidst a quagmire of despair.

With warmest wishes.
 

lemonbalm

Registered User
May 21, 2018
406
I'm sorry to hear that. I know it's unfashionable to criticize the NHS but I this is not acceptable and I think you need to give them a kick. Can you call the ward tomorrow and speak to ward sister, make a real fuss? I'm not sure we have matrons these days but I wish we did. We need to be more demanding on behalf of our loved ones who are not able to be. I am by nature a peace maker but I have bared my teeth several times in the hospital over the past few years on behalf of my mum and it does get results. You could also call the nursing home and ask for their advice. They may have some clout.
 

Eaexh01

New member
Jul 6, 2020
9
Hazah8 you are absolutely right about care and comfort, which sadly seems absolutely lacking in terms of my Mum. Every time I visit the Nursing Assistants seem to get great joy out of telling me how rude or obstructive she has been. I nearly lost it with one yesterday, snapping that Mum is clearly unwell and if someone would bother to properly investigate we might be able to help her.

I am going to let rip today, this is beyond a joke.
 

Eaexh01

New member
Jul 6, 2020
9
The psych team have finally requested a CT scan as say Mum’s behaviour is high unusual - I have been telling them that since admission 🤬
No time scales for the scan though
 

lemonbalm

Registered User
May 21, 2018
406
Well, I suppose that's progress of a sort. So frustratingly slow though! We should really have a fast track hospital system for patients with dementia or distressed behaviour. I can feel a campaign coming on.

Keeping my fingers crossed for you and your mum.

By the way, I notice that PALS is mentioned in some posts where there are concerns about hospital treatment. The PALS team at the hospital your mum is in may be of some help.
 
Last edited:

Mydarlingdaughter

Registered User
Oct 25, 2019
125
North East England UK
PALS is there to support people who are unhappy with the care and resolve matters. So yes definitely contact them. if need be.

What you need to do is identify the person on the ward who is designated as coordinating your Mums care, you also need to be clear that you are the next of kin... sometimes staff will be cagey about giving out confidential information over the phone. There may also be some help from the psychiatric liason nurse.
My Mum refused to co operate with the psych asessment, it is possible your Mum refused? Fortunately a good psychiatrist was able to get a diagnosis for her based on the brain scan and a basic assessment. So really thats what your Mum needs, a proper assessment as you say.

Yes, dementia onset can be very rapid. Vascular dementia particularly so. A change in routine or pre existing illness can speed things up very fast. Sometimes the person copes by relying on a routine or familiarity, then when that routine changes they appear to get worse quickly, but its because of the routine change basically allowing the reality to be seen.
So, I suggest a plan might be:
Identify yourself as next of kin and make sure it hets put in her notes. If you aren't in the notes, they won't necessarily tell you much.
Identify the nurse with overall responsibility for her nursing care.
Identify the doctor and psychiatrist.
Keep asking them for updates.

If still no joy, contact the PALS team.
 

Eaexh01

New member
Jul 6, 2020
9
I put a complaint into PALS and funnily enough a CT scan was arranged immediately. The results came back clear so now the psych team have finally agreed to see her.
I want them to move her to a mental health ward where she can be properly assessed and diagnosed. The treatment she has received thus far has been appalling.
 

Hazara8

Registered User
Apr 6, 2015
486
Can dementia be present/diagnosed without any visible damage/changes to the brain?
A great deal of emphasis is placed on symptoms and a history of behaviour. My late mother proved to be ' clear 'after an apparent TIA, no scarring etc. Yet shortly afterwards Alzheimer's and vascular dementia were officially designated. My own personal observations prior to the eventual diagnosis suggested a deterioration in memory and a marked change in behaviour, albeit mild then. Often the true answer is revealed post mortem when direct examination of a brain can take place. Focus on behaviour/ symptoms and your own close relationship in respect of " changes" - all of which can only assist the professional assessment.
 

canary

Registered User
Feb 25, 2014
12,871
South coast
A CT scan is not always detailed enough to show up the damage, particularly in the early stage. When mum has a scan at the memory clinic she had an MRI scan.
 

lemonbalm

Registered User
May 21, 2018
406
I'm glad you are making some progress and hope it continues. Annoying that you have to complain to get anywhere.

My mum has a "probably diagnosis" of vascular dementia based on a CT scan after a stroke/bleed and based on her behaviour. She has always got too agitated for anyone to do any tests.
 

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