Dementia patients in hospital

Discussion in 'ARCHIVE FORUM: Support discussions' started by Skye, Nov 14, 2006.

  1. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi everyone

    I've been asked to talk to a nursing seminar next week about the needs of dementia patients in general wards. I've no experience of this, John has not been hospitalised since he was diagnosed, but the opportunity is too good to refuse.

    I've picked up from previous posts about difficulties with feeding, toileting etc., but I'd be grateful for any points anyone with experience could make.

    Sorry, moderators, I know this should probably have been on the Raising Awareness forum, but I know I don't always have time to read through all the forums, and I really would like to get as many points across as possible.
  2. Lila13

    Lila13 Registered User

    Feb 24, 2006
    Not sure whether to repeat all the stuff about my mother's episodes in hospital in her last 8 months, but of course it is all individual.

  3. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    #3 jenniferpa, Nov 14, 2006
    Last edited: Nov 14, 2006
    Point out that a dementia patient has NO IDEA what a call bell is! Also, putting up the side rails on a bed will not stop a determined dementia patient (or anyone else for that matter) from wandering - it will just cause them to climb over them and probably fall. Technology is no substitute for actually checking the patient. You might also point out that simply telling a dementia patient something once (or a hundred times) is fruitless - they might as well talk to the bedside cabinet. Yes, they may seem to understand, and yes they may understand at that moment, but that moment is gone in a flash. Conversely, a patronising tone will often get "through" with unfortunate consequences. These people may have dementia now, but many of them spent their lives in positions of authority - they don't necessarily take kindly to being treated as idiots.

    Good luck

  4. Dave W

    Dave W Registered User

    Jul 3, 2005
    Good luck

    Keep us posted on what they say at the seminar, but I suspect you could teach them more than they'll teach you - just by reading and posting on TP. My Mum fainted in very hot weather shortly before she was admitted to hospital for psychiatric assessment, and an ambulance was called. Thankfully I was on hand, but the experience would have been very unhelpful and mutually bewildering otherwise. If those running the ward don't know how to cope with/handle someone with dementia, the patient - unlike someone with say a broken leg or cancer - isn't going to be a reliable source of information or guidance. That's even if they accept they have a 'condition'. So the ward staff do need to know.

    (Maybe it's one of those byproducts of the taboo around dementia in everyday conversation that people aren't generally aware how to respond or manage situations - if the general public were familiar with a few basic tenets (disagreeing if often fruitless/if they think it's happening, then it's real to them/don't bank on them remembering anything (accurately), perhaps the lives of those in the early stages would be improved as those around them could be more helpful? Just one way in which awareness can be positive thing.)
  5. Lucille

    Lucille Registered User

    Sep 10, 2005
    Hello Skye

    I second what Jenniferpa says. It's no use staff relying on the patient for a full and frank exchange of information! When my mum was admitted, they asked her what tablets she was on. Her reply: "None." I did intervene, but I wonder how many other times when I wasn't there she was asked questions which were later relied upon ... I did see once that her tablets were left next to her bed in the little cup and she hadn't taken them. Again, this was despite me saying she needed to be supervised to take them, otherwise she wouldn't bother.

    I appreciate it's difficult as general nursing staff can't be expected to know everything about dementia patients. I think we've discussed this here on TP before. At that time I mentioned that there should be some kind of 'flag' on their file to highlight the nature of their illness.

    Good luck with it, Skye. I'm sure you'll do John proud! Let us know the outcome, won't you.;)
  6. MJK

    MJK Registered User

    Oct 22, 2004
    I'd completely agree with this bit. My Mum has AD and was recently in hospital for a minor procedure, and the difficulties of just getting a date scheduled were enormous! Despite repeated calls to the hospital, giving my name as first contact they kept sending appointments to my Mum, who promptly lost them/changed them etc. Such a little thing was made far more stressful than it needed to be. It seemed like each individual I spoke to was helpful/sympathetic but the next time I called I would speak to someone else and have to go through the whole scenario again. There didn't seem to be a foolproof was of flagging up the problem on her records.

    I took Mum in and helped answer questions about her medical history, otherwise she would have given some wrong information.

    Whilst in hospital there weren't any particular problems as far as I know. My Mum was in a bed (deliberately I suspect) right next to the nurses' station.

    I collected her and stayed with her for a few days afterwards and applied the medication she needed. Following that District Nurses were supposed to come in to continue this. Unfortunately Mum kept telling them she could do it herself - and they kept accepting this and stopping their visits. I couldn't seem to convince them that it wasn't her physical ability to do it that was the problem, but the fact that (whatever she said) she just wouldn't remember.

    My Dad also had dementia, and was in a hospital and then a Hospice. He was mentally much worse than my Mum and didn't know why he was there/where he was etc. I felt that he was really seen as a problem in both places, that the nurses whilst capable of looking after his physical needs didn't have the time/experience to deal with his dementia. He was wandering off, and wanting to go "home" and the answer seemed to be to drug him if he was becoming difficult.

    I've admittedly had limited experience of hospitals but have found that the whole thing fraught with problems whanever someone with dementia is needing to be hospitalised.


    P.S. Sorry, probably not very constructive!
  7. Nell

    Nell Registered User

    Aug 9, 2005
    Very similar experiences to others but . . . one happy story to share. Just one of Mum's nurses (she was in hospital with a broken hip) was fantastic! Mum thought she was French (she wasn't!) and kept asking her about France. She patiently went along with this and in every way was a model to others for nursing AZ patients. She supervised everything Mum needed done (nothing left to chance!) and was the soul of tact. If Mum said she could do something herself, this nurse would say "of course, but this is your chance to be waited on! Take advantage while you can!" (or similar) and my Mum would let her do all sorts of things. She would do little extras - one very hot day she came inand "sritzed" Mum with rose water to cool her down; another time she added ice to the drinking water to keep it cool. I never did get t ask her if she had personal experience of AZ. She was an angel sent from heaven!
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    My mother was admitted to hospital with shingles. The hospital asked her if she was in pain and she said `No`, when she really was. Why she replied in the negative, I`ve no idea, perhaps she didn`t understand the question, perhaps she didn`t want to be a niusance, but everyone knows and understands the pain of shingles, so why did they ask my mother.

    When we went to visit, she looked as if she was in a state of shock. She was, in fact, in pain but unable to communicate this.

    The day she was discharged, I went to see her in the NH. Her face was so relaxed and peaceful, I had to comment. Her Key Worker said she`d been given some paracetamol. No-one asked her, it was just prescribed, because the home knew she would be in pain.

    I did make an official complaint to the Hospital and an investigation was held. I received an apology.
  9. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Thanks everyone. I knew I could rely on TP. You've all come up with suggestions I wouldn't have thought of.

    I've decided I'm going to prepare a handout for them. Even if most of them end up inthe bin, at least some of them will read it first. (sorry, lousy grammar. I'm not putting the nurses in the bin!)

    I'm making a note of everything you've suggested, so keep them coming!
  10. Cate

    Cate Registered User

    Jul 2, 2006
    Newport, Gwent

    Mum's not been in hospital for a stay thank goodness. All the points raised I think are great. The only suggestion I can add is that a 'list of possible difficulties for AD patients' with tick boxes for simplicity, completed during admission, is stapled to the inside cover of the notes, with room for relatives 'recommendations during care period'. That way all staff (including Agency, who maybe only doing one shift) have easy access, and a quick reference to specific needs and difficulties.

    Maybe though this should be a request to each Local Health Board to be introduced as a 'policy'. Could maybe AD Society take this one on. Not sure of resources needed of such a mamouth task though. Just a suggestion.
  11. Lila13

    Lila13 Registered User

    Feb 24, 2006
    I don't know if anyone in the last hospital my mother was in could have done anything to lengthen her life, but they could have made her last few days pleasanter.

    In the hospital where she was last Oct-Nov she wasn't diagnosed with dementia, in the first ward she was feverish and her strange behaviour could easily have been due to delirium and dehydration. In the other wards she put on a very good performance, (and delighted in performing), so you had to know her well to see how much she'd changed.

    I pointed out to a nurse when she had wrapped her pills up in tissue and put them in the rubbish bag, after that they put the pills in her mouth instead of just leaving them with her, I don't know if she held them in her mouth and then spat them out later as so many do. I wasn't so concerned with making her take them (she had a right to refuse), but with making sure that they knew what she was taking, and that any refusal should be a clear informed choice.

    Some nurses (and some other staff too) were very good with her and I did wonder if they'd had relations with dementia. However there was no continuity of care as she was moved around 4 different wards.

    Hospital staff should realise that next-of-kin don't necessarily live just round the corner, and that not living near doesn't mean not caring. It is just lucky if a relative is able and willing to go and stay with the patient, short- or long-term, not something that can be taken for granted. Very few of us have the sort of relatives who can be treated as unpaid servants.

    If two or more relatives are visiting the patient, and representing different versions, doctors and nurses etc. shouldn't assume that they can judge the situation after only a few minutes' conversation.

    One of the other patients had a care review in the ward before being discharged, and that should be offered generally.

    It was obviously no use asking my mother if she'd seen a Social Worker, or what did the OT say etc. When you're in hospital lots of professionals come along and say "I'm ... and I'm a ..." afterwards it is very difficult for anyone, even without dementia, to remember who they all were.

    The doctors' mental tests aren't much use. The fact that someone knows the name of the prime minister, can spell some words backwards, count backwards from 100 etc. doesn't necessarily mean that that person is able to look after herself alone in her own home.

    The OT told me they only needed some measurements (bed, toilet etc.) and then she'd be sent home with an "Intermediate Care Team" for the first 6 weeks. I did the measurements, took digital photos, then found she'd been sent to a different ward with a different OT, no explanation.

    It wasn't much use the nutritionist lecturing me, as I pointed out whatever I bought and prepared for my mother, she was the one who had to eat it, I couldn't force-feed her. Her malnutrition wasn't due to a shortage of food in the house.

    One person said one thing and another another, no consistency, that is where a care review would have been useful, if there are differences of opinion about care, (and there probably always are), it'd be more useful to have them out in the open, otherwise you just don't know whom to trust.

    The OT in the third ward seemed to think that my mother's discharge depended mainly on us obtaining a "dossett" box, not realising at that stage that my mother wasn't going to be able to use one.

    After many phone calls the Intermediate Care Team never appeared, in fact most of the people I spoke to had never heard of such a thing, and no-one seemed to be able to contact the OT who'd originally suggested it. At that stage, just after discharge, people at the hospital said it was up to her GP and social services, whereas the people at the surgery said it was up to the hospital, etc.
  12. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    I have to say that Lila's experience, although far worse in its outcome, is almost identical to what I experienced when my mother was in hospital - she wasn't in so many wards, but he general tenor was the same. Really appalling.

    I've thought of something else - open visiting hours. This seems to be very variable depending on the hospital, but in my limited experience, the desire of the hospital to keep to its procedures works against family members spending as much time with the patient in order to provide them with the reassurance they need.

  13. Lila13

    Lila13 Registered User

    Feb 24, 2006
    It's difficult to translate all these experiences into handy hints for new nurses, isn't it?

    With the two falls involving hospital, it was just unlucky that the local hospital which we'd all known for so long had suddenly ceased to accept over-70's. Even the ambulance driver didn't know, so took her to the old hospital first.

    She seemed to have been OK on those occasions, (she had a talent for falling without serious damage), wasn't in for long enough for visitors, she was very pleased with herself for remembering all our names, addresses and phone numbers, reported that she was "bad" the first time because she woke everyone in the ward by screaming for my brother.

    I can't remember who the people were who phoned me from the hospital, expecting me to rush round and fetch her, again the just-round-the-corner assumption, they couldn't take in the fact that if there are several trains and buses involved you just don't know how long a journey will take, perhaps these people have never been anywhere by public transport? Now looking back it was such a short time, I could have got cabs, but I thought we were in for the long haul, and would soon have run out of cab money. And they were definitely blaming me as if I should have been staying with her full-time. Even when I was with her full-time I couldn't stop her going out and falling because when I locked her in she got violent.

    But when she got home from those episodes, having a jolly flirt with the ambulance men, she did say "I'm so glad you're here" and "Now I remember I am only happy in my own home". Those little things that made it worth while.
  14. sunny

    sunny Registered User

    Sep 1, 2006
    talk to the relatives

    When a patient has dementia I think one of the points to raise would be for the medical and nursing to identify the chief carer or carers in the patient's life and communicate with them specifically either by phone or on patient visits and then communicate with each other when they hand over to other staff on the next shift.
    When mum has been in hospital in the past, I have found it enormously difficult to get any info on what treatment she is having and why etc, or even as basic as to whether she was taking her medication or eating properly as I cannot ask mum herself I found this very frustrating and in fact I felt I was being a blooming nuisance just asking questions, but if I didn't who was going to- Mum? I can see why it is happening, the staff are awfully busy and I know and appreciate that entirely. (Actually, I am smiling at the memory of when Mum was in casualty and the doctors were earnestly asking her some detailed questions and some of the answers she came up with!)
  15. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Thank you all once again. You've been absolutely great.

    I've identified 17 separate points in your posts! I've spent this afternoon writing my hand-out, (I've included all your points), and that will be the basis for my talk. I don't know how long they'll let me talk, it's apparently the first time they've included dementia care in their conference, but if I don't get it all in at least they'll have the hand-out.

    I'll let you know how it goes.
  16. Lila13

    Lila13 Registered User

    Feb 24, 2006
    For me the worst thing about the last hospital was the way they forced us all to sit in a semi-circle round a noisy radio that no-one wanted to listen to, and wouldn't let me put a chair close to and facing my mother so we could hardly see each other, and I was too scared to kick up a fuss about it.

    Why do they treat people like that?

    In the old hospital, if people wanted to listen to the radio, they had headphones.
  17. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Utter fiasco!

    I promised I'd let you know how the nursing seminar went...... well it was awful!

    To start with, I'd been told it was for general hospital nurses....well it wasn't! They were all NHS practice nurses, it was an in-service training day. So my handout was useless, not relevant to them at all. I'd spent hours working on it.

    I spent the introductory session revising what I was going to say in the workshop session......and then was told they'd rearranged that at the last minute. Instead of 45 minutes, we had 10. Each group had move round when the bell went, to get round as many workshops as possible. Speed dating had nothing on us.

    It was a complete waste of time, and I came home thoroughly depressed. To make matters worse, John had come with me, and he was getting more and more irritated, thinking we could go home each time a group session finished.

    If that's how the NHS is organised, it's no wonder we've so many complaints.

    Thanks for your help, everyone. Anyone need a good handout?
  18. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Oh Hazel, how depressing for you (and how depressing for us all!).

    Keep hold of those handouts - maybe we can find a resource that might be able to use them

  19. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    .. if the people organising the training are incompetent, how can anyone expect the people being trained to be any different.

    what on earth good can 10 minutes of a workshop session be?

    so sorry your time, work, nervous energy were wasted.

    Is your handout something you produced on your PC? is it something that can be e-mailed? I'd be interested to see it and if you wished, could convert it to a PDF file that we could put up on the Resources section......
  20. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Brucie, yes, it's on my PC. I wrote it in Publisher, but can copy to Word. I spent a lot of time condensing it to two A4 pages, and I find this easier in Publisher. I can email if you PM me an address.

    Glad someone's interested!!!

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