Any experience of rapidly progressive dementia?

[Nel1234]

Hi all, I've posted a couple of times in recent months about an almost overnight change in my 78 year old mum.

She came out of hospital last Thurs after being in for 3 weeks following a fall at home. I had real concerns about her coming home (with a care package but knowing a lot of responsibility would be with my 82 year old dad). However my brother & dad were persuaded by consultant who said she'd do better at home!

She's now back in hospital (readmitted on Tues) after calling emergency services 3 times & saying she was afraid of dad.....police had concerns about her state of mind....ambulance called.

A whole series of tests is being completed again & a psychiatric assessment. All tests completed during her last hospital stay were clear.....they are still waiting on results for 2 autoimmune tests.

As she had a seizure in hospital mri & ct scans have been done, nothing acute.

I've done a lot of googling & now wondering as nothing acute has been found so far & the almost overnight change could this be RPD?

Does anyone have any experience of this could you describe the first changes you noticed in your loved ones?

Thank you

This may seem unusual but my first thought is check for UTI or similar as that can have a a profound effect.

Blood flow keeps the brain working so it could be linked to physical drop reduction without damage plus panic?
Are geriatric specialist teams involved as they look at the whole of her health?
What type of person was she before.
Having strangers in her house and reorganising to make care easier is very very stressful.

And facing death becomes very real when she is under hospital care. For her generation the idea that s/he died because of the admission (cause) not the sickness (undiscovered cancer etc) is a thing.

Have not read the other thread but did DF and B see changes which would indicate a loss of rational thought as opposed to fighting for her independance?

Hi, been checked already & is fine x

Hi thanks for your reply. She was very rationale before & I wouldn't say she's anxious or worried about losing independence etc she is accepting being in hospital & hopes she'll get better. However she is also convinced dad is unwell...for an 82 year old he is doing OK we don't have any concerns. She's also been convinced I'm unwell I'm 100% fine.

Her changes were not sleeping, talking very quickly, changing from subject to subject, difficulty completing simple tasks, lack of concentration, erratic behaviour eg a sudden love for shopping....never been a spender before.

She is now extremely agitated & suddenly my dad, brother & I can't do anything right but she's more tolerant with others.

She's told dad (married 57 years) she's not coming home until he agrees to go for couples counselling!

Older people, especially those with dementia, get delirium during a hospital stay. It can take up to 6 months to resolve, but often doesn't.

Hi that's certainly been mentioned a couple of times & I brought it up with mums new consultant. She said it's a possibility, but there has to have been something else ie an infection beforehand?

I can only speak from experience with MIL, but any change in routine really sent her into a tailspin. She just couldn't cope with anything being different. As long as each day was the same routine, you'd hardly know she had dementia as it was just general forgetfulness and gradual inability to do things she used to be able to do. Go back a few years and she'd come on holiday with us, and generally "adapt" to the different accommodation, different car, and she'd just follow us around the airports, attractions, etc.

We first noticed a massive deterioration around five years ago when we took her on a short UK break. She was, as usual, fine on the journey and driving around the locality, amenities, shops, attractions, etc., but when we got back to the holiday cottage every day, she was an absolute nightmare. Asking us if it was our "new" home, where she'd be sleeping, how she'd be getting back up - she kept phoning her son to ask him to come and "rescue" her as she didn't know where she was or why she was there - this was when she was in the house where we and her grandchildren were. She kept padding around the house all night, waking everyone up, asking where she was, etc.

We didn't take her away again, even day trips started to stress her out. So we eventually just got to the stage of only taking her out locally to shops she knew and to our own homes for the odd afternoon/meal, etc., which was fine due to the familiarity.

She went into hospital for a couple of days for a simple procedure, and apparently was a nightmare for the staff as she was getting violent, aggressive, argumentative etc during the night. We spent as much time as possible sitting with her during the day, but it was constant "why am I here", "where am I", etc. When she got back home, she was completely lost - couldn't turn the heating on, couldn't turn the TV on, couldn't change TV channel, didn't know how to boil a kettle, didn't know how to cook a meal or even make a sandwich. Started phoning us in the night asking where we were as she was on her own (after she'd been on her own in that house for 20 years since her husband died). However much we all sat with her, reminded her how to do things she'd been doing for years, she never got back to where she'd been after those two days in hospital.

It was really scary to see the sheer speed and scale of deterioration due to being out of her own familiar environment and it shows just how much day to day routine is more "muscle memory" rather than actual thinking/ability to do even basic mundane things. The lack of movement, i.e. being stuck in a bed for two days also clearly caused loss of oxygen to the brain which also made a massive difference. We'd always said she was better when she was active and worse when she'd had a "lazy" day.

She even came out thinking that her daughter was actually her mother! It's frightening how much alike the three generations were and yes, looking at photos, her daughter today does look similar to her mother looked 50 years ago in old pictures etc, so it looks like MIL's mind went right back to her younger years which partially explained why she couldn't do "modern" things, didn't know where she lived, even had no memory at all of her husband of nearly 40 years!

The whole thing is absolutely awful for the person themselves and those around them. The quicker we get some kind of treatment the better.

My friends mum went to bed one night woke up the next day totally crackers, seeing aliens and all sorts.
Was eventually diagnosed as Lewy Bodies Dementia. She was only late 60’s and lived till 80 something. I suspect there may have been subtle signs before but its easy to spot with hindsight, she had been living alone up to this point.
sorry your going through this OP, hope you get some answers it’s a cruel disease.

Depression would tick a lot of what you listed spree shopping would be a classic as gives a high uplifting her spirits.
Worry and stress and lack of sleep could result in her being awake in the early hours which in of its sell is bad as we need the sleep period to recharge our brain.
agitation from night fears because our brains can be lonely places at 3am.

Loss of recent memories and remembering old problems could be why your mum wants couples councelling. But (sorry to say) dont discount that your DF may not be able to manage but is afraid to say as he is unwilling to allow her be placed in a home.

Thanks to everyone for your comments & for sharing your experiences.

At visiting tonight mum was quite happy but very very chatty - hard to get a word in - I don't know how she keeps it up & doesn't lose her voice. My dad is naturally very quiet so this change is so overwhelming for him.

Tonight mum was paranoid that the walls have ears, big brother is watching & suggested we go into toilet to talk as it isn't bugged! She also gave me an empty lemonade bottle & bottle of tomato sauce as 'evidence' - of what I have no idea!!!

I told a nurse to make them aware....as mum seems to be quite good at being on her best behaviour for the docs & nurses!

Such a worry seeing her like this.

Do they have all the legal stuff in place for if she has lack of capacity?
And how open is your dad to her being in a home?
Plus could you get her to wear a tracker watch?

This sounds more like a mental illness than dementia to me. Her age does not preclude her from one - any trauma can trigger a mental illness.

My brother & I have financial & welfare POA - is that what you mean by legal stuff? At present she's been admitted as a patient without capacity & it would not be safe for her to be discharged.

Dad cannot look after her like this & he knows it. Should the hosp suggest discharging her soon we will need to refuse to take her home has anyone else done this before - how did it go?

M & D stay quite rurally she's already wandered outside once on her own & fallen all doors now kept locked & dad keeps the keys (that sounds so bad when I see it written down).

Both my grandma and mum had/have dementia which suddenly worsened after an accident. My mum was knocked over just before COVID and the long recovery plus isolation of lockdown seemed to accelerate her decline. Also hospital stays are notoriously disabling for elderly people, especially if extended. Apparently just a few weeks is enough to lose mobility, continence and ability to cope with life or live independently.

I've thought so too.....since this started I've said to as many medical professionals as I can that other possibilities have to be considered.....being 78 doesn't mean it's a given its dementia.

The last time she was admitted it was after a fall so they just seemed to focus on the fall & getting her back on her feel mobile enough to go home. This time she was admitted because of her state of mind - so that needs to be their focus.

Have you told the hospital that she wandered?
Because that is different from going out with an aim and falling.

She is not safe in a place which has no alarms on the doors so i can understand why your df is locking the doors. That is restraint which will lead to conflict which leads to her calling the police. legally it falls within false imprisonment

So its now a safety issue. She is mobile with a risk of harm by exposure (if she decided to go out a window or catches an open door) and a low chance of being found in time by NDN
You/Df/Db need to arrange a meeting with the hospital social worker and have a stepdown plan of her being released to a carehome rather than going home. If she gets better in the carehome she can then go home.

Dementia is so personal.

If that was my Dad I'd be thinking - was the seizure a vascular incident causing his vascular dementia to have a typical step like deterioration? Has the hospital stay caused a temporary/or permanent change in his dementia? Does he have a UTI? Has the recent routine changes affected him? Is he just having a bad day?

The complications of dementia mean I rarely analyse what the reason is because it changes so fast it's a waste of energy. What I concentrate on is the moment snd getting through that day.

I sometimes look back at the past year and then I can understand changes better. I think Dad's progressive alzheimers is happening actually more than the step like vascular. Not that it changes anything - I just have to deal with how he is presenting at this moment.

If as others say she moves into temporary care you will learn more from their assessments and observations.

If she doesnt I would still recommend choosing a care home and adding her to the waiting list for respite care. I'd done this when Dad joined us a year ago, and he came to the top of the list for a respite stay a few weeks ago. It's been amazing having that break to recharge. I was exhausted. We are looking forward to him coming home next week.

Thank you that is great advice. This is so new to all of us, until 3 months ago we have been so lucky with 2 very healthy, fit parents. Last time occupational therapists & physios worked with mum & a care package was put in place for 2 visits a day, to get her home. I wasn't aware we could engage with a hospital social worker. I'll get onto that!

The hospital social worker works with bed management to put the supports in place to clear the bed. So dont agree to any plans which are not funded and so actionable. If you agree to let your mum home there is no (financial) pressure on the system act quickly. So the care home needs to be a final option not a short stepdown before going home.

And be careful that you are not taking on personal financial obligations when you sign on behalf of your mum so read and cross out sections that do that.

Was your mum asked about going home the first time? Presumably she will be less keen now what with the stuff about couples counselling? That might help you refuse it but you can refuse anyway - be ready to be firm in the face of pressure.

There should still be available something like 'reablement care' but it has different names in different areas. This is for 6 weeks of after care following a hospital admission to help the person get back to the point of living independently again. It's not charged for or means tested. My mum got this and was transferred to a convalescent home while she recovered. Ask about this as a first step.

I’m a MH nurse. Can I ask, what kind of ward is she on at the moment? Has anyone mentioned her being admitted to an Older Adults Psychiatric Ward? You say that she lacks capacity so has she been admitted under DOLS? Mental health wards are locked spaces so she’d be safe. It does sound like it could be dementia or mental health related which the staff on MH wards are experts in, including sorting out any medication and thinking about next steps. This is providing they’ve ruled out any physical causes, of course.

look at symptoms of Lewy body dementia.

Hi I'm not aware of DOLS, just looked it up there - sorry I sound incredibly naive but as I say this is all so new to us. I'm also the younger sibling but seem to have become the family spokesperson but I'll do whatever it takes to keep both my parents safe.

She's in an elderly care ward....I am aware that the unit does have a secure ward.

Consultant due to see mum again tomorrow I'm going to ask for a meeting on Tuesday.

@Nel1234did you get any answers about your mum’s condition? My 82year old Uncle is currently still in hospital without any answers to his sudden decline into delirium.

Hi its been a crazy couple of months. Mum was in hospital for 3 weeks & consultant was very thorough. Between this stay & the previous 3 week stay she had 2 mris 2 ct scans, a lumbar puncture & tested for numerous infections etc all clear. While she was in she was also assessed by a psychiatrist & who diagnosed mania. She was put onto lorazepam (which she had been on previously but hospital stopped it during previous stay) & olanzapine. She's been home now for about a month & doing well - having trouble sleeping which could be side effect of the medication. She's under care of older persons psychiatric team & so far we're all happy with the support & care she's getting from them. Follow up with hospital consultant in a couple of weeks. She has very little recollection of what happened during her stay in hospital & just how bad things were for us seeing her that way. It was a worrying time. I'm not taking anything for granted in the future, we may have more worries to come just glad to have her home & doing well x