Hospital Care for patients with dementia...........good or bad?

[elly]

Hi everyone, I hope you don't mind me asking you all this, but I'm a nursing assistant in a hospital, and we quite often have patients with dementia sent onto our wards. We're a stroke unit, so we are classified as emergency medicine - i do worry that our patients with dementia don't always get the attention and reassurance they need in such a hectic environment. So I was just wondering if any of you had any feelings or thoughts on this - I'm not doing a research project, but I do work with an incredibly inspiring Nurse Practitioner who is very keen that we take note of any problems and improve on them, and I am hoping that by seeing what other people have experienced that we may be able to look at what we're doing and see what needs changing. Thank you all again for your time. Please feel free to PM me if it's easier

 

[Cate]

Hi Elly

How refreshing to read your post, someone in general medicine who is actually thinking that dementia patients may have special and different needs, hats off to you.

My own experience will no doubt be echoed by lots of others here, in short............ a nightmare.

Mum had a heart attack and was not expected to live through it, but God bless her she did (she has since passed away from Alzheimers').

The staff in A & E were fantastic, the Ward staff on the other hand despite being given a full explanation of her dementia and difficulties all of which were totally ignored, and they were useless.

For example< even though it was written on the front page of mum's medical notes "this patient has Alzheimers'" I was telephoned at 4:00am and asked "was my mother normally confused" That about sums it up really. I could go on and on and on with other examples.

I firmly believe that EVERY nurse as part of their training should have more than 1 lecture on working with patients with Alzheimers' so I do thank you for taking the time to ask the question.

Cate

 

[jenniferpa]

Oo - you may wish you'd never asked this. My mother had dementia that was actually caused by a stroke and there are several areas that were problematic.

1) Food - half the time food and fluids were left in front of her when she couldn't actual see them (or manage them if she could) - she lost half her visual field to the stroke so they might as well been placed in the corridor frankly. And they wouldn't let me come in to feed her, sigh.
So I ended up bringing my own food when I visited - frankly it was like something out of a third world where family members are EXPECTED to provide nursing care, yet was far more restrictive.


2) People with dementia probably can't use buttons, no matter how obvious they are - you need to check frequently if they need anything (and by this I mean at least every 15 minutes because, tah da, they have lost short term memory in many cases and this means they get distraught if they have to wait any period of time).

3) bed rails may be a good idea to stop them rolling out but be aware that as far as a dementia patient is concerned they have been put there to restrain them and they will try to escape - my mother got trapped at the bottom of the bed by scooting down.

4) Did I mention not relying on call buttons? Essentially you have to have the same protocols in place as you would have with young children.


Lets put it this way - my experience with 2 separate hospitals and several hospital stays was that hospital is a really, really bad place for people with dementia. The best hospital stay she had was when a retired (non dementia) social worker was in the bed opposit and took it upon her to call when Mummy need anything AND gave me more of an update on what was going on in the ward.

Oh - this isn't specific to dementia but this concept of having ward meeting when it's visiting hours is bloody, bloody stupid. True there are people there (for some, not all, patients) but there were several episodes when people needed nursing or medical assistance (falls, seizures) and it wasn't possible to find ANY nursing staff.

Can you tell you've hit a nerve?

I think you need the same approach you would have with a non-verbal child, bearing in mind that when you've seen one person with dementia, that's all you've seen -some people with a dementia diagnosis are far more cognitively aware than others. However, you should always be aware that even when quite far advanced people with dementia can appear quite on the ball, because they can make an effort for a short period (nod, smile, nod) when it's not going in at all.

 

[fredsnail]

Grandad has been in hospital 3 times in the last 14 months, he has VD.

Each visit his dementia has been worse, but the care he has received has been very dependant on whether the nurse caring for him has any personal experience of dementia. Those who did knew how to treat him with care and respect.

During the last visit they put him in a room on his own at the furthest end of the corridor away from the nursing station - because he was noisy. He was trying to get attention because he was confused by banging a cup on the bed table.

They were only forced to move him when he fell out of bed over the rails (the day after he'd had his hip pinned after breaking it).

Food and drink was left on the bed table out of his reach - we had to ask most visits for a water jug, or cup.

One day they sat him in the corridor to keep him quiet and told us that everyone said hello to him as they went past, but it just confused him more.

A different nurse every day meant there was no continuity, we had to explain the same things over and over again as no notes were made.

Another patient stole his hearing aids - it took 5 days of phone calls, seeing nurses every time we visited (culminating in my Mother losing her temper on the phone) before the nurse on the receiving end of the outburst got them back.

The worst though was when we asked a nurse how he'd been that day and she didn't know who he was until the nurse sitting next to her told her he was one of her patients - she'd been on duty for over 6 hours and hadn't been in to see him once. She took us into his room and then saw he'd not eaten his dinner or drank his cup of tea and told us to get something down him while we were there before she went out of the room. The tea and food were cold - and we were unable to find a member of staff to tell them.

I understand that dementia patients can be difficult - but they still deserve respect and dignity, something that is sadly lacking in most nurses.

Sorry for the whinge - and thanks for asking.

 

[Margaret W]

Hi Elly, how nice that you are seeking our opinions. Get it logged on your developmental plan pronto or no-one will ever know that you have been proactive.

Every dementia patient is different. That is the first thing to realise. They are not just a bunch of mixed up loonies, but individuals, and I'm sure you know that. Some get confused at the slightest thing, others are more strong (and perhaps defiant). My mother was the easiest to handle of all people in the world with dementia. She did as she was told (but not all the time). So imagine her being admitted to hospital in a ambulance with suspected pneumonia. Did anyone tell her not to get off the trolley in the waiting area? No. So she tried to get off the trolley. If someone had said to her "Marian, you are going to be on this trolley for a little while, please make sure you stay on it", she would have done. Other dementia sufferers might have thought "****** that, I am getting off". After a while, of course, she would have forgotten the instruction, or being my very impatient mum, would have got off anyway to find out what was happening and why she wasn't being attended to and would probably have got lost somewhere in the building, or even outside. She she would have needed frequent reminding to stay where she was - and would have complied.

Which is why she died. The inability of the NHS to look after her properly. The Care Home staff knew that she needed to be hospitalised, but the paramedics could not guarantee that she would be properly looked after as a dementia patient. So they wouldn't take her to A&E unless she was accompanied (by us - the care home staff didn't have people on tap). We arrived to accompany her at 9 a.m. and awaited the ambulance. It didn't arrive until 1.15 by which time mum was dead, from pneumonia.

So, Elly, good luck with your research.

Best wishes

Margaret

 

[NewKid]

Just some thoghts

I agree it is GREAT you have asked, and also that your senior seems aware and keen to learn more too. It must be very difficult to deal with in a busy hospital ward, I'm sympathetic, because as others mention regular checking and much more thoughtful care than usual is required if someone has memory problems.

When my Mum went into hospital recently (unaccompanied by anyone apart from the paramedics) my biggest worry was that she might actually just wander off and try and go home and no-one would notice, especially if she wasn't dealt with quickly - she had only recently gone into care, was very confused and angry about why she had to be there so I thought 'aha' they have given her the perfect opportunity to do a runner! Luckily that did not happen.. although I was later told that she had been found on a different ward and certainly she was often unable to find her bed. I would suggest if possible the person may be better off in a fairly central position where they can be more easily monitored by passing staff and also in my Mum's case will enjoy the regular activity around them and friendly even if fleeting concern shown.

The first day I arrived to visit the first thing the ward manager said was that Mum had been very aggressive - but Mum's interpretation of this was that she had just wanted to go and sit and chat with some other women by a bed - as you can imagine in a care home they sit communally - and she was told she couldn't sit there. She didn't understand why (or of course why she was there at all...) Welcome to our world - where calm repetiton/ simple explanation is required.

A week later when I visited Mum she was in the exact same clothes she'd worn all week and all her spare clothing/ toiletries missing - not the end of the world, but a reminder that such patients won't be able to recall what stuff they have or where it is (compounded if you swap them between beds)! An understanding nurse did locate everything in one bag tucked away in a corner and mostly staff were kind and did try. However I totally agree with the above poster that the NHS shift system these days seems totally detrimental to really good consitent nursing care. (I also found this when my Dad was in hospital with a stroke.) Almost every day a new nurse, who doesn't seem to be up to speed on the patient - 'haven't had time to read the notes yet', 'only just met them this morning, but they seem fine'. It is really disconcerting - whose needs are being met with this long shift/ couple of days pw system?! It may not be a system you personally can change but maybe it's worth considering how you respond to a relative's request for info.

I hope this hasn't put you off. Honestly there are kind, practical and thoughtful ways of aleviating some of the basic problems that present when someonone has memory problems. Oh yes, and certainly in my Mum's case to talk about her having AZ / dementia in her earshot would also be a trigger - because she hasn't

Good luck, I am sure you are one of the best!

 

[Skye]

Hi Elly, thanks for your question, it's good that somebody cares.

Jennifer's post gives lots of examples of what is wrong with the system, and I have to say they're pretty general, though some hospitals, and some wards, are better than others. It all comes down to the staff and training, none of it is rocket science.

I just wanted to tell you what is happening here. There were so many complaints about the treatment of people with dementia in hospital we decided to do something about it. We started a course for Dementia Champions, for hospital nurses and assistants in general wards. It's a joint venture by Alzheimer Scotland, the university nursing school, and User and Carer Involvement.

The nurses go to the uni for one day a month for a year, some of the time in school (though sessions are informal), some in the Alzscot day centre. There's also a carers' session, when we tell of our experiences, and give some insight into the different forms of dementia.

We're about to start our third course, and we feel it is having an effect, though there's a long way to go. The champions are supposed to cascade their knowledge to the rest of the ward staff. All the champions say the course has made a huge difference to their attitude.

One charge nurse said after the first course, 'When we got a patient with dementia, we'd often say, "Oh no, not another one". Now I know they're not causing us problems, we're the ones causing the problems.' Brilliant insight!

I notice you're in Brighton, which has an excellent uni. How about seeing if you can set up something similar?

All the best,

 

[maryw]

My word, you've opened a can of worms here. Tap into my posts to see the full story.

In a nutshell:
1) Anxiety was made much worse in a strange environment; totally heartbreaking to hear my Mum shouting and sobbing. I did not see any nurse spend time reassuring her or even treating her as the person who was still in there somewhere! Her life should still have had value!

2) They made it worse by putting her in a side room and closing the door on her, and like Jennifer says she couldn't use the buttons!

3) They didn't notice she had become dehydrated (she was also severely visually impaired and couldn't find her glass of water), so she became bed-bound and developed a chest infection, which resulted in pneumonia, which resulted in death.

4) They blamed all medical symptoms on "confusion" and ignored treating pneumonia despite my concerns. By the time she received treatment, she was already dying.

5) My needs for support, reassurance and understanding for what was happening to my dear mother were toally ignored so don't forget the carer/daughter/next of kin!! In other words no palliative care or policy seemingly in place.


And thanks for raising this................

 

[living in hope]

Hi,
My husband has been in hospital twice and both times have been a nightmare, in A & E he was left with us for hours while a drunk had six assorted people trying to calm him down! My husband was not there for self inflicted reasons so should not have been at the bottom of the queue for care! On the wards the staff have left him for ages and he is incapable of asking for help or pressing buttons etc. Yesterday we waited for 4 hours to see a doctor before he could have a drink. I don't expect special treatment for my husband but would like him to be treated as a person and not someone who's aggressive. He's mainly aggressive when they hurt him or if he's frightened, but their answer is to call security. Think there should be guidelines in place for dealing with dementia patients. i.e private room, regular checks, relatives encouraged to stay as long as they want, not just visiting time, finding out if they can feed themselves, checking if they need the loo not presuming they are incontinent, regular reassurance, simple explanations of what treatment/tests are needed, none of this is rocket science to me it is just common sense and careing.
Sorry if I'm negative but that's my experience.
Lorraine

 

[j.j]

My mam has just come out of hospital after a urine infection and the care was awful, the usual leaving the food in front of her, when i turned up on the ward she was in the process of tipping her water jug over herself, when i rang later to see how she was i was told oh she,s fine just took herself off to the toilet! she hasn,t been able to do that for two years! What concerned me the most she was wandering around the ward there were medicines left by other patients beds my mam could of taken anything, i explained in effect it was like letting a two year old loose on the ward,mam was a danger to herself and other patients she could of fiddled with drips or any number of things. We demanded she be returned to care home because they could not meet her care needs.
may i add the nurses were lovely but unless like someone else already said they had experience of dementia they just didn,t understand.

 

[elly]

Thank you all so much for taking the time to reply to me, it's greatly appreciated. I'm sorry that you have all had such awful experiences, with completely unacceptable reasons why. I am completely shocked and saddened by this.I know I am only one person - but I feel very strongly about this, and desperately want to change what is happening. I have heard about a course, but I am only a healthcare assistant and might not be able to go on it.....but hey, I'll keep pushing for it - I am not going to give up on it.

Thank you all again for taking the time to reply

 

[NewKid]

Elly, I think you should run the place! Honestly, you may have found your niche. Good luck with finding out more as it's a very interesting if distressing illness and there's clearly (from the very serious outcomes and heartbreaking experiences described here) something sadly lacking on many NHS wards. Hazel's initiative in Scotland sounds like a real step foward.

 

[SusanB]

Hello, Elly

You're from Brigton. Same as me. Ah, Royal Sussex County Hospital. Mum was there about six months ago and several times before that in A and E - someone called me to tell me that he couldn't really tell that she had dementia and...believe it or not, was I sure?

"Her dementia really hasn't presented itself tonight. When was it diagnosed?

After being admitted to A and E with a suspected stroke, on Feb 14th...OK, I HAD A DATE...and said NO, I wasn't prepared to wait there for 8 hours, they called my Mum's 80 year old neighbour at 10.50pm to ask her to come and

collect her. You can imagine the response.

No link up between systems - all details had to be taken again - no logging onto Mum's surname, "B......, D....." and seeing her medical history. Oh no. That would be far too easy. Or expensive.

The hosp. wouldn't let her home without a care plan being set up. So...was there a system set up and appropriate communication set up? No. PM me for details. Nobody knew anything.

Did anyone think that as her daughter, having no experience of the protocol (oh yes, there's "protocol") nor processes that someone would sit down with me and tell me?

Mum's CPN (happy to name and shame via PM wouldn't set up a care plan because she had previously refused care.) I rang him and said, "she's got dementia, please help me". He ignored me. R. S, you know who you are...In the end the care plan was set up with a private agency and the CPN hasn't spoken to me since. USELESS GIT. I hate him).

Happy to answer any personal questions via PM.

Susan

 

[Kayla]

I would agree with the others, that the hospital treatment of elderly and confused patients is absolutely appalling.

My mother fell and broke her hip, while she was in her room, in a very good, family run care home. She was taken to hospital promptly and assessed, but then had to wait 48 hours before she was operated on. She had rheumatoid arthritis, so naturally once she was in a position to begin trying to walk again, she'd got very stiff in her joints and it was painful for her to bear weight and her arms were also very weak.

The hospital staff put her drinks out of reach, did not help her at mealtimes and visiting was very restricted, so we couldn't come in to help her eat. She lost so much weight and got so dehydrated that we thought we were going to lose her.

Everything in the hospital was painted white and the floors were grey, so Mum had no idea where she was, because her vision was very poor. The use of bright colours to mark out doors and different walls would have made a huge difference to her and helped to make her less confused.

After four weeks, the care home said they'd take her back and try and feed her properly, so she'd regain her weight. The hospital sent her back by ambulance, in November, dressed only in a dirty nightie, with a hospital blanket round her shoulders. In her bag, she had a clean nightie and warm dressing gown, as well as a clean set of clothes and a warm fleece.

The owner of the care home said that Mum had been neglected in hospital, but she did improve with the good care in the home. However, they couldn't meet her needs and she had to go into a nursing home.

Mum was able to walk with a stick, before she broke her hip and had been living independently in her own home, just three or four months before. I'm sure that if the hospital had operated within 24 hours and had given Mum better care and attention, she'd have made a reasonable recovery and perhaps have been able to walk again with a zimmer frame.

In the nursing home, she put on weight and once she'd settled down, she was able to hold a sensible conversation, play games like dominoes and feed herself. The hospital just seemed to write her off, because she was old and got confused after her operation. They have a lot to answer for, and I'm glad that at least she had good care in the homes.

If hospital patients have come from a care or nursing home, then it would be sensible to see that they have carers to attend to their needs and also allow unrestricted visiting, so that relatives and friends could help at mealtimes.

It is also really important that staff find time to talk to patients, especially when they are confused. Mum was so much more co-operative with the nurses who talked to her and were very patient. One excellent nurse was able to move Mum without a hoist, because she could get her to make an effort and move herself, with just a little support. She was a lovely lady, always ready to smile and encourage. We need more people like that in our hospitals!

My Mum died suddenly last year. She was 82 and it was so sad, that perhaps she ended up in a nursing home, because of lack of appropriate care in hospital.

Kayla

 

[elly]

Thank you again

I have just found out i am allowed to attend the course, and have managed to recruit a staff nurse and another nursing assistant who want to come next month as well....i'll be putting my plans for world domination into effect soon..... so just wanted to say thank you all again, hearing your horrible stories reinforced to me all the reasons why i want do this course and attempt to make a bit of a difference on my ward, and hopefully on other wards too

 

[fredsnail]

Thank you for your efforts - if we've helped you to help just one dementia patient then it's worthwhile.

Good luck with the course - let us know how you get on.

 

[Trying my best]

Hi Elly,

This is a really small point in comparison to some of the horrendous things other people have told you about but one of the things I found most upsetting during my mum's one and only stay in hospital was that the nurses & doctors asked her an endless series of QUESTIONS. People with moderate dementia really struggle to answer any direct questions at all, and people like my mum, who is now in the advanced stages, are completely freaked out by them. Being continually asked things that they cannot possibly answer only serves to increase anxiety, fear and feelings of isolation. It is possible to gather an enormous amount of info without ever asking questions - by making gentle suggestions about things, and then simply observing the person's responses to assess what is going on inside their minds, and/or their bodies. I so wish they had used this approach when dealing with my mum.

Another top tip, which everyone here on talking Point will know about is that there is no point in challenging the missconceptions of a person with dementia. And yet hospital staff seem to always point out every time my mum was wrong about something.