Hospital and dementia

[SimoneChouxssoff]

Has anyone any experience of a parent with dementia who needs to go to hospital with an unrelated illness?

I’m a bit worried about my dad if he has to be admitted. He has dementia, confabulation, never says the same thing twice. People who know him can manage him but what happens to those patients who are admitted who have no family and carers available 24 hours a day in the ward to limit the damage a dementia patient can cause? I know the hospital will have notes but the constant change of shift staff might mean that something said would be taken seriously and hinder the treatment.

Has anyone else been in this situation?

Generally every adult ward now has a multitude of patients with dementia.
What do you think he would say to hinder treatment?

If you have a look online you will find a printable document called This is Me. I cannot remember which website, maybe Alzheimer's Society.
If you have one of these filled in and ready to travel to hospital with him, it will really help the staff.
Tell them any relevant info as he is admitted. The hospital will be very used to this situation. A large proportion of elderly people in hospital will be confused during their admission.

My father was in hospital for about 2 weeks with suspected pneumonia/kidney infection. Honestly, i had to be there from first thing in the morning (7ish) til about 9:30 at night. (And for the first couple of days when they kept taking him off for tests and moving him around the hospital I was there overnight too - slept on the floor next to his bed in A&E lying on my coat!) There's no way i could have left him. He needed someone to help remind him not to get up too quickly if going to the loo (he doesn't remember that he gets lightheaded and out of breath and likely to fall), where the loo was, then where his bed was again, what he was doing in hospital, that he needed to have a drink. Reassurance over food times, help ordering the next meals, help with making the bed comfortable (no way would he remember how to use the electric button things). Constant reassurance. I needed to be there to explain to the doctors and nurses - if dad felt ok in the moment, he'd tell them he was absolutely fine and didn't even know why he was in hospital, despite me knowing that merely 10minutes earlier he was in such agony he'd been telling me if life was going to be like this it wasn't worth continuing.

The trouble is that because his alzheimers purely presents as memory loss, it's not obvious at all to the nurses and doctors. The number of times I had to get quite cross/firm with the consultants (constant shift changes) to explain they needed to ask ME what was going on with him rather than taking his word for it was infuriating. We printed a big sign above his bed saying this patient has Alzheimers but it made no difference as he sounds fine to anyone who just briefly met him. Oh and they'd just tell him to press the call button if he needed to get up/was in pain/had questions etc!!! FFS - As if!! Sure he'd say oh thankyou at the time but had no idea 2 seconds later. And the tea trolley people would ask if he wanted a tea, instead of just giving it to him. (He needed to drink!) I've read that people with alzheimer's will default to saying 'no thankyou' as it is too hard for them to process questions etc and they know this shuts the conversation down as making a choice is hard. I'm seeing this more with my Dad.

Honestly you'd think being in hospital would have been easier, but it was 20 times more difficult than when he is at home (where he can manage fine merely with daily visits). I literally needed to be there all the time.

Sorry OP, it's not what you want to hear. But I sympathise, and having been through it recently, only now realise/ understand how much someone being there is essential for someone at certain stages of alzheimers. I think maybe once they're clearly doo-lally it's different as you can rely on the staff realising not to believe everything the person says. But there is a massive gap for people who appear to much more capable than they are.

I know I’m an extremist in terms of reducing treatment in older life, and I’ve no doubt that I can go too far on this; for me, I’d rather lop several years off my life than go into hospital if there is any other option at all. Bear that in mind. But do consider having a discussion with the GP about hospital avoidance. I would say that hospitals should be a last resort for everyone but tbh I’d go even further for someone with significant dementia, that hospital is actively damaging and of limited benefit. At least find out more about local options like Hospital at Home, Urgent Community Response, community matron, how to access a care package/increased carers at home etc. Perhaps there’s already a DNACPR in place, or better still a Respect form.

I would do everything you can to have them treated at home or as an outpatient.
DF had dementia and every hospital stay brought about a huge decline in him. Hospitals often lead to temporary delirium in elderly patients, but in dementia patients it isn’t always temporary, or leads to a significant downturn.

I too did the staying as much as allowed. DF wasn’t helped with choosing meals, fed foods he didn’t like or had a mild allergy to, as they chose for him. I took a white board marker in after the 3rd time and wrote what he couldn’t eat in red pen above his head, and he was still fed it the next day.

When I couldn’t go in he would call me hugely distressed and confused. It was (only just) easier to stay with him.

As his dementia progressed he would try to climb out of bed frequently, so when i wasn’t there they would gilt his head down and raise the sides to try to stop this. This led to aspiration pneumonia, and his cause of death.

Thank you for your replies and it is as much as I expected. I will fight as hard as I can for home care.

Honestly, if it was me I’d not want any extra treatment for other ailments that would prolong life. I guess if it’s an improving life quality rather than extending its worth pursuing, but don’t expect a hospital stay to be easy.
I know the trials of a relative that can sound A-ok to a stranger when the reality is that there are virtually no marbles left intact…My relative would decline significantly after each hospital stay without the treatment resulting in any significant gains. The ward was so noisy, patients screaming for their mothers, thinking they were in prison, all sorts. It was necessary for me to be there as much as possible for their physical safety from the other patients as some of them were quite aggressive and the staff pretty indifferent. I still feel a bit traumatised by it to be honest, and it was a great relief when we got the GP to agree to no more treatment.
I’m sorry you are in this position, it’s awful. Good luck.

Its not just dementia. Very sick patients may have delirium. Staff are not fazed, or should not be. Doctor DD recently had an elderly nun patient who shouted at her saying she would go to hell. A couple of days later, when she was getting better, the nun reverted to being quiet and kind.

When we were in a similar position I focused on getting my mum back to her familiar surroundings as quickly as possible. Her carer would call up her friends to ensure that there would be 24 hour cover in her sheltered housing flat and as soon the antibiotics started taking effect, I would ask the doctors if she could be discharged. We then stopped the night time cover when my mum started demanding rent from the carer, as we knew she was back to her old self.

I went in one day to visit my mother in hospital and she was unhappy about the behaviour of others who were quite lost in their dementia. Then she announced she could see a naked black man cavorting. I looked and it was a tangle of black tubes attached to the empty bed opposite.

Don't worry about the staff. Do worry that hospitals are confusing and frightening places, with pockets of chaos, and do your best to get your dad home quickly and safely.

Then she announced she could see a naked black man cavorting. I looked and it was a tangle of black tubes attached to the empty bed opposite.

😂Sorry - that made me laugh out loud.

My Mum was told that if she needed anything to press the buzzer. After explaining the futility of this instruction I taped a note on her feeding table. It was removed. As you say the changing staff make it very difficult

I am afraid I am another who would advise that your dad is treated at home, if at all possible.

My mum is now in quite advanced Alzheimer's and has been admitted into hospital twice over the last 8 months. The first was last summer after she fell and fractured her neck so we obviously had little choice but to have her admitted. She went into hospital fully continent and at the end of her 4 week stay she was left double incontinent (as they had allowed her to soil the bed every day), she had forgotten how to walk and full of bed sores. She has sadly never regained her continence and has now resulted in home carers 3 times a day costing £1000 per week.

The second time was just last month, mum had some kind of infection and was presenting with a fever, it was the weekend and we had no choice but to call 111 who called an ambulance and following a 26 hour wait in an A&E corridor she was admitted on a ward and stayed for 2 weeks. I had to fight every day to get her fully fed and watered, it did not matter how often I explained that mum could not feed herself or bring a beaker to her mouth it fell on deaf ears. My dad and sister both caught norovirus from A&E so it was down to me to be there every day and it was exhausting trying to get the staff to understand mum's needs. From what I witnessed every day, those with cognitive impairment were often left for a long time as they just could not articulate their needs to the already overstretched staff. I fought very hard to get mum discharged. We never did find out what was wrong with her as the hospital called it 'an infection of unknown origin' so it felt like a complete waste of time and again put mum back cognitively (she would often tell me she was scared in there and mum hardly says a single word these days but said that as clear as day).

I have since got mum moved to a new GP and she came to see mum last week. The GP has re-written mum's ReSPECT form (which I recommend if you don't already have one in place) to state that mum is only to go into hospital if there is a breakage of any kind and everything else is to be treated at home under the care of the GP surgery and nurses.

Sorry to be bearer of bad news but ime and most of those I have spoken to on support groups we would all say that hospital is really not the place for dementia sufferers, unless it is absolutely essential.

I hope all goes well and you can get the treatment via another route.

I think you’ll find they’re used to coping with dementia.

At over 90, with quite bad dementia, my DM was admitted with a broken hip. I knew she would probably be difficult - it doesn’t help that someone with dementia won’t understand what is going or why - but the staff seemed to cope pretty well.
At one point my sister was there when DM told the nurses that she was going to tell her father of them, and he’d have them all put in prison.

To which a completely unfazed nurse replied, ‘Well, I’ve spoken to your father, and he says you’ve got to eat your lunch.’ 😂

Once again, thank you. It’s the cognition that I’m worried about. Dad has less mobility than he thinks and certainly less than he tells everyone.