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?

I work on a specialist dementia unit and my patients often don’t have family to advocate for them. Mealtime is supervised and snacks and drinks are offered regularly. Toileting is prompted every 2 to 3 hours and showers or baths offered daily. I am a registered nurse and there are dementia support staff as well as healthcare assistants.

That might be how it works on a specialist dementia unit but my experience is of nurses on an elderly care ward who couldn't comprehend that someone with Alzheimer's might not remember or get confused by information.

In theory, help with eating, washing, reorientation, distraction. In practice, it is really variable and depends on luck with experienced staff, not too many of whom are off sick, and a good Sister.

Do complete a hospital passport for your relative. There are some online, I will find a link. They do make a difference.

Link to ‘This is Me’, hospital passport from Alzheimer’s UK.

It would be a great idea to print and complete the This is me booklet shared previously and be clear what the needs are. The best thing about a this is me is that it tells the ward important info about what matters to a person. Family names/ important pets/ what they love doing/ significant life history.
If they become more disorientated as a result of being unwell and in a strange noisy environment, this info will help the staff to reorientate them.

For staff to acknowledge that what the person says may well be unreliable. Eg “I’ve had a wash”….actually no she didn’t,”I’ve changed my pad”, no she didn’t she through knickers in the bin. This type of thing caused huge problems for my mum.
the ward reported she was able to manage all ADLs independently and her previous morning visits were cancelled when she went home!
All because my poor confused mum was believed and no one double checked at all.
I stayed with her at the hospital a couple of days each week but when I wasn’t there gently guiding her, the staff simply believed everything she said.

This is such an important tool to you use. I completed one for my mum but they didn’t take account of it.
They asked me to fill a simple form in the go above her bed (quick reference for the staff), but they didn’t seem to look at it.
when used properly it’s SO useful.

A&E and a hospital ward are two different places.

Someone would need to stay with them in A&E if they weren't safe to be left. Whilst in A&E they haven't yet been admitted and are still the responsibility of family/adult social care or whoever usually cares for them.

Once admitted to a ward then most hospitals try to keep people with high needs relating to their memory on a dementia ward (although this isn't always possible) where there is in theory additional staffing to account for the patients having additional needs above what they have been admitted for. Even in this scenario families often have to advocate/assist where possible, and definitely if admitted to a general ward. That doesn't need to be 24 hours a day though (and most wards wouldn't have visiting hours that would support this either).

Most people with that level of need in hospital though would usually require assistance outside of hospital- either in a care home or from carers in their own home. On admission the ward should take details about what 'POC' they have at home and what support they need whilst on the ward.

Anyone in a care home will have a hospital passport sent with the explaining their needs in detail and it's a good idea to complete this for someone at home as well.

If she pays privately for care at home there is nothing to stop you paying for carers to continue to go in to see her in hospital to support with meals, company and advocacy if family cant be available to do this- it shouldn't be necessary but sadly as you have found acute hospitals are terrible places for elderly people with dementia to be .

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.

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.

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.

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

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.

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

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.

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.

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

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

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!!

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.

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.

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.

@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.

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.

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