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

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

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.

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.

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.

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.

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.

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.

Awful. I'm sorry for your experience. I feel so sorry for all the staff doing their very best too.

The hospital where my MIL was had a poster which outlined her capabilities on sight, type of food texture, mobility category, assistance required with eating etc. there were only 4/5 ish categories and the applicable category was circled and it was clear even to visitors what was required. It was like a child’s picture coded timetable.

That passport for dementia was on other patient’s walls too (MIL had cognitive issues but not dementia) but the 4-5 category visual poster with picture categories allowed literally every member of staff to know on sight what was required.

The dementia one was what allowed the HCAs to have a chat with the patients.

It was much better for what the OP was wondering about which is the day to day care level required.

@Strawberriesandpears I know and poor care not reserved for the elderly. Sadly I speak from other personal family experience I’d rather not share. Not dignified at all.
Staff are completely overwhelmed especially in A & E.

It's so incredibly unfair that those of us who will have no family (and through no fault of our own) will be treated so poorly at the end of our lives. We don't deserve this.

MIL in hospital atm. She has advanced Alzheimer’s and some serious medical conditions now. Until fairly recently she was fully mobile and enjoyed a fairly active social life. We had a party for her 90th a few months ago.

Communication and general care hasn’t been good at all. Following some serious falls and a bleed on the brain she is now bed bound and on pureed food/ yogurt etc only.

She’s been moved 9 times! As all records are electronic now usually each time she’s moved they have no awareness of her needs as they’ve not had time to read her notes. So dangerous. Comments like “she will be home in a couple of days” and “everything is normal” were frequent in the early days.

Family have to be there at meal times otherwise she’d eat nothing. We’ve been taking in fancy yogurts etc. Food is dumped on her locker and collected later on. Yesterday they brought her a sandwich ( can’t eat) and sometimes it’s nothing.
Luckily family and her partner can advocate for her.
I do worry for those who have nobody there regularly.

A&E- nothing at all. Patient might get a cup of tea but I’m not sure anyone considers food for them or assistance with going to the toilet. It’s so very poor especially given the amount of time a person can actually spend on A&E eg 30 hours.

Main ward- fed and watered and regular intervals but I doubt anyone notices if they’re not actually eating and drinking much. Not treated with much dignity or kindness. As you can tell, I thought the NHS care of my mum was awful. I was there as often as I could be but I had primary age kids and a job so couldn’t be there for as long as I wanted.

And yet if you are in hospital for more than 28 days you lose disability and carer benefits BECAUSE THE NHS IS DEEMED TO BE CARING FOR YOU!!

Terrifying. I worry about it pretty much all day every day....and I have decades to go.

It's quite frightening isn't it? I don't know what the answer is really 😕

I dread ending up in hospital as an elderly person as I will have absolutely no family at all. I have no children by circumstance and am an only child, and it feels so sad and frightening that I might end up treated so badly at the end of my life.

In my experience (on an orthopaedic ward) they get no help at all. Zero.

I filled out the This Is Me forms, they knew she had dementia. She needed help to mobilise because she had broken her hip so had a hip replacement surgery. She was not incontinent but they assumed she was and put her in inco pads, they only actually took her to the toilet on a SaraSteady if I was there and asked them to. The physios visited, she refused to cooperate because they didn't ask her in the right way.

She needed prompting to eat and drink and again, nothing. They just complained to me she wasn't eating and drinking. So I took her things she liked to eat and prompted her.

She was only in for ten days fortunately, and was very successfully rehabbed back at the care home.

People with dementia tend to do badly in hospital for all those reasons, along with the noisy and busy unfamiliar environment which they find confusing. I agreed with the care home my mother would only go to hospital for emergencies such as broken bones.

Care was variable with my DF. His mental capacity took a nose dive in hospital before he died. He was left to order his food and then eat it by himself, cups of hot tea just left on his table. When I visited one day the only thing he could recognise on the food order card was a muller yoghurt (and that was because of the picture) hadn’t got a clue what anything else was, so not sure how he was expected to work out how to order his meals. He also picked up the water jug to drink from rather than the glass. It was awful 😞
I lived miles away so couldn’t be there every day

I found staying in A&E with my dad was essential to ensure he had water, meds, and food.

We took his meds in. Otherwise he wouldn't had any.

I also found that when I left after 30hrs, they realised how essential a 1:1 was and he wasn't ward before I had arrived home (30 mins).

Communication with the ward was awful. I visited daily and badgered them for information.

He received no physio so declined physically because no staff got him out of bed. I got him into a chair on several occasions. (I'm trained in patient moving and handling so was confident).
Staff didn't tell me they were discharging him - they rang his care home who were brilliant and rearranged other residents and acquired an appropriate bed for him.
I also received a call from the Integrated Care Board who said they were going to put him onto end of life continuing care. They stopped and asked if I'd been told he was end of life. I hadn't. In fact I had tried to change his respect form to reduce the need for admission because I felt he should be allowed to die peacefully. The hospital told me it wasn't appropriate yet.

When my dsd is admitted to hospital (not dementia but similar needs re supervision) she has to have her carers with her 24/7, the acute hospitals aren’t set up for that sort of care. Dsds care is fully funded anyway so her rota’d carer simply stays with her in hospital. Some hospitals have dementia wards but they won’t have 1:1

Having had experience of an elderly care ward this year i'd agree that care can be very variable even between shifts.

Where possible try and get family to visit as much as possible, especially at mealtimes.

On a dementia unit or even an elderly unit I would expect them to be aware of such traits. However, my MiL had a stroke and so was on a stroke unit where I'm not sure all the staff were aware of her dementia. She ended up falling out of her bed and injuring herself. We didn't know about the hospital passports, so were we now in that position, I'd definitely fill one out for her.

It's very difficult isn't it? My mum was tube fed after surgery for a while, and following that she had assistance with eating soft food. Then she was moved to a different ward, and I would visit only to find that she had tubs of microwaved food with the cellophane lids still on. The housekeeping staff just handed it out. She was on a side ward which didn't help as there was nobody to notice. For three weeks my siblings and I went in at meal times to make sure she was able to eat. The staff themselves were lovely but they were so busy and seemed to be on a rotation where few of them got to know her needs. Things improved after she saw the occupational therapist and physiotherapist.
Fortunately (in this instance) she is not mobile so she couldn't wander off.

It's very horrifying that people without anyone to advocate for them are more or less abandoned in hospital. Thankfully my mother had us, but even so the communication with us was very hit and miss. We had to figure out for ourselves what extra help she needed. Mum is not diagnosed with dementia but certainly has some cognitive impairment and more so at that time after a stroke. So she was on the stroke ward until she went to a rehab unit where she got a great deal more help.