What support should hospitals provide for patients with dementia without family present?

[Chops3454]

My mum has dementia. She doesn’t have physical disabilities and can walk about independently, but she gets very confused in unfamiliar places and would not reliably ask for food, drinks, help with toileting etc. She will often say she’s “fine” even when she clearly isn’t.

If she ever ended up in A&E or admitted to hospital, what actually happens if family members cannot sit with her 24 hours a day?

I’m asking because we previously had another family member in hospital who needed prompting and help with eating, and they were apparently not even fed properly because nobody realised they needed assistance. It’s made us very anxious about future admissions.

We would obviously visit and help as much as possible, but realistically we could not provide round-the-clock supervision due to work, children and other responsibilities.

Do hospitals provide extra supervision or dementia support in situations like this? How do they make sure vulnerable patients who are confused but physically mobile are eating, drinking and safe if relatives are not there constantly?

Just trying to understand what support should normally be in place and what families can reasonably expect for a person with Dementia who "hides" it well and could also wander?

My MIL is in hospital just now. She hasn’t been diagnosed with dementia but there is definite cognitive decline. She’s in because she doesn’t eat or drink enough or forgets to eat and drink. She has carers at home but they don’t encourage her to eat they just give her food and leave.

The nurses say that she eats in the hospital, I don’t know how encouraging they are but they do say she’s been eating. Visitors are not allowed to go in during mealtimes so we have to hope that she is eating. When we go to visit we take little mousse/yogurts and encourage her to eat them. Then ask the nurses to put the rest in the fridge, the nurses said we could do this. MIL assured us that she was eating them but then the nurses asked us not to bring anymore as they were building up in the fridge. So she wasn’t asking for them as she doesn’t remember they are there and the nurses are too busy and it’s not their job to give them to her.

We’re now in the process of getting her moved to a care home as she isn’t going to manage at home. But I feel that she’s declining in hospital as she now thinks she’s in her old house and visiting my dh at the place he worked at 20 years ago. It’s all very sad and worrying. And I do often wonder what would happen if she didn’t have us going in to see her.

My Mum who had dementia had a number of stays at hospital when she was delirious as well as demented due to imbalances in various things. The reality was often dementia wards just were under lock and key and patients wondered around inside until they annoyed staff who then took them to the loo, put them i front of a TV or back to bed. We ended up doing 24/7 in the hospital with her to make sure we knew what was happening medically, that she was being properly fed and medicated, washed and toileted etc. We were lucky there were so many of us to do the rota. We would book a local hotel room and 3 of us would rota in and out including overnight and rarely left her side because when we would come back she would be in some sort of state.

Just what the hell are those of us who have no family supposed to do? And how are only children supposed to provide this level of support to our parents? There's nobody for me to share any of this with.

I'm worried about my dad. I don't think anyone can enforce the carer staying until the person is admitted. There is a lot of sitting in uncomfortable chairs which they wouldn't be doing at home.

I have to say our local hospital was v good with DM when she broke a hip at 90 or 91. Her dementia was quite advanced and she could be decidedly stroppy!

My sister was there when she was telling the nurses - apparently for the nth time - that she was going to tell her father of them, and he’d have them all put in prison.

One of the nurses came straight back with ‘Well, I’ve spoken to your father, and he says you’ve got to eat your lunch.’

DM made an excellent recovery and went on to 97.

My experience is that the care varied between wards in the same hospital. In A&E my Dad was kept near the nurses station so someone was near him the whole time and they didn’t expect me to stay. The stay in the second ward was much better, he doesn’t have a diagnosis but it’s very clear he has severe mental decline. The nurses made sure he was able to order food, actually asking him what he would like to eat and making sure he ate something. The first ward was more hit and miss and the care less good and less understanding. He was on an elderly ward each time and they had a nurse in each bay watching the patients. He wasn’t encouraged to move about much and his mobility has declined significantly.

Yes, I agree. We had issues with understaffing meaning mostly health care assistants. When we did get a nurse they changed do often none od them read the notes or knew my relatives needs or baseline. I rang up to check on relative and was told improvement, sitting up eating and was "fine." I was stocked and dubious, went down there to find relative couldnt swallow or sit up, and was being tube fed. I have no faith whatsoever ever, relatives where possible needs to regularly check in. I could never get any updates from front desk and had to fight to meet with a doctor or lead nurse who knew what was actually going on. Also multiple belongings stolen by other wandering patients, and when relative was able to move around, kept having falls, wandering the hospital, and had received a good telling off, dementia patients cannot help it! The whole situation was devastating.

TW: deliberately ending one’s life.

Same experience here and I also had young children and a job so could only visit 3-5 times each week.
My mum (aged 66) was on the geriatric ward (she had cancer and spent months in hospital). I had to get one of the doctors TO PRESCRIBE 3 JUGS OF WATER PER DAY to keep her hydrated. Once she’d lost 2 stone in weight I was called in and told that staff had noticed that she was “being really sneaky and not eating her meals.” Actually she wanted to end her life.
She deliberately starved herself to death over a period of 6 weeks on an NHS ward and none of the staff noticed what she was doing until it was too late. Caring profession my arse