Improving hospital care for people with dementia - using visual identifiers.

[e.sutton]

Hi My name is Liz
I'm a researcher at the University of Leicester.
I’m part of a team who are trying to find out the experiences of relatives and carers of people with dementia who have been in hospital in the past. There are growing numbers of people with dementia in hospital and we want to know how their hospital experience was and whether using visual identifiers can help improve hospital care for them.

Visual identifiers can include symbols such as butterflies, flowers and/or wristbands to indicate a memory problem. However we don’t know what people with memory problems and their relatives/carers think about their use. Even if your relative hasn’t been in hospital, we would still love to hear your views.

The research involves taking part in an interview (don’t worry, think of it as a chat). This can be over the telephone or online, whichever you prefer. We keep all your information confidential and you won’t be identified anywhere by name. If you can spare an hour of your time we would be so grateful. It is such an important topic.

If you are interested please contact me at:

Es225@le.ac.uk or telephone 07747203124

The project is part of a programme funded by This Institute at the University of Cambridge:

 

[Jaded'n'faded]

My experience (when my mother was in hospital) is that the staff - unfortunately - take no notice of such things. I also visited on one occasion to see a page ripped from a notebook taped above her bed with the word 'confused' on it.

At times she was raging, hallucinating, trying to smash through the doors with a chair yet the consultant assured me there was nothing wrong with her after a 5 minute conversation (when she was calmer.) This was on a neuro ward.

I wish you luck with your study.

 

[Palerider]

I can say categorically that visual identifiers don't change a thing from first hand experience. Organisational culture is the issue.

 

[lemonbalm]

If the visual identifiers meant that you could turn left/right, into a part of the hospital where staff were well trained in how to interact with people who had dementia, and the whole environment were geared towards making the experience as dementia-friendly as possible, then that really would be useful. It is a rare and wonderful thing to come across hospital staff who know how to treat a person with dementia.

 

[jaymor]

Identifiers are just that, they show someone has dementia. It doesn’t educate the staff on understanding dementia and from that comes no knowledge of how to care for someone with dementia.

 

[Duggies-girl]

'Oh we can deal with that' when told that dad will not stay in his bed 'Oh I love a wanderer' was another comment on another ward. Could they deal with it, no. Did dad wander, yes and had 3 falls, one of which was bad.

When emphasized that dad had an oesophageal stent and should only be given soft food why let him choose meat pie and roast potatoes. He had dementia and cancer and was not capable of choosing. Lack of communication and care.

Dad fully continent was put in a nappy (and I hate that word) because it was easier than taking him to the bathroom leading to 3 falls because dad was not going to use a nappy. A little help with getting to the bathroom would have saved all that as well as the cost of 3 head scans.

No amount of butterflies or flowers would have made any difference, it's staff training, education and a change in attitudes that are needed.

 

[AwayWithTheFairies]

I have recently had my mum in hospital, and denied entry to her family due to CoVID, she ended up being given a Head CT when she seemed confused in the night which was extra hassle for everyone of no good reason, because the nurse she babbled oddly to didn’t know she has MCI. Would a recognisable label on mum have help? Yes, maybe it would have!

As someone who works in the hospital system, yes we are, on average, ****, but let’s not throw the baby out with the bath water. If the occasional staff member who has to deal with every single person in the hospital, not just the minority with dementia, but might happen to know something about dementia (like me) then happens upon a situation but doesn’t know your LO has it, how do you think they are going to get any improvement and suitable adjustment in the way they are treated? Answer is, they won’t.

Much as we would all like to wave a magic wand and make all our problems disappear at once, dealt with by someone else with no effort on our part,

In my opinion, this is a good idea to explore, not just dismiss as insufficient, and people who are doing this research deserve our help and engagement.

 

[AwayWithTheFairies]

I also think it will help raise awareness which is very much lacking with this illness. Everyone complains endlessly that no one understands it. So, start making it visible!

 

[Jessbow]

I very carefully completed a ''This is me'', detailing everything about Mum. Left it on her table ...where it promptly disapeared. Found it two weeks later , in her holdall , in an envelope with her name on and labelled ''do not lose''.

hadnt even been looked at.

Short of a sharpie tatoo across her forehead ''I have the D word'' I gave up. ( and that was in a geriatric holding ward)

Oh and she went without meals because the didnt/couldnt tick the meal sheet. The butterfly on the wall about her bedhead meant nothing to 99 % of the staff

 

[AwayWithTheFairies]

I guess the problem with all this, that maybe doesn’t apply as much to something like for example children with autism, who are given wristbands at theme parks etc. In order To go to the front of queues, is that we are trying to convey the D word without our LO realising, at least when they are at the stage to object. Probably the same when the aforementioned children with invisible issues get older and get self-conscious about being labelled, but in reverse in our case as it progresses, PWD may lose their ability/shame about having the disease.

Unless it is very explicit, end even if it is, the staff are not trained to deal with it or any other anomaly. You are lucky if they manage to do the normal job correctly for the cognitively normal, never mind anyone with an issue.

So coy subtle cryptic symbols like flowers and butterflies even if noticed, will just be regarded as an ornament, I fear. I think the sharpie on the forehead may be the only answer.

The other issue I have is that, before it happened to mum, my general assumption is once someone has the D word, there isn’t much point treating them for anything much because they are about to die anyway. They are just bed blockers who need discharging to another institution ASAP.. Not condoning this incorrect atttidue but saying it exists even in highly educated people, who haven’t lived the situation yet.

 

[Lawson58]

However, it doesn't sound like an expensive exercise and to me that means even if a small number of people get assistance, then it has been worthwhile. Sometimes it takes time to bring about change but even small things can make a difference.

Any system that Liz comes up with needs to be consistent in every medical setting and allied situations and I hope that they come up with some effective ideas.

Blind and low vision people wear badges indicating their status and my husband carries a tag that indicates he has a defibrillator in situ. Perhaps the idea has potential and it certainly sounds more practical than a lot of the technological gadgets that have popped up on TP.

 

[Lone Wolf]

My partner with advanced Alzheimer's was in hospital for 2 months in a specially purposed dementia ward, but few of the staff had any understanding of dementia, and there were no special procedures and processes in place. What annoyed me most was that the consultants and doctors would do their ward round before visiting time began, and I could never find out what their assessments were. Is this what happens in childrens' wards? If I was able to track down the duty nurse they were invariably very hazy about what the consultants had said/assessed. And no matter how agitated or distressed my partner was, she was only ever described in the notes as "pleasantly confused".

 

[JoeOk]

Just a note to say that this member has permission to post about their study.

 

[RosettaT]

The problem I found was there was no appropriate ward for my OH when he was in hospital for 12 weeks. He was shoved around from ward to ward often only spending 1 night in them. No-one got to know him or his needs and I was even told by some they had no idea he had dementia as he was admitted for an infection. When I said it's in his notes I was told they don't have time to read them. As good as an idea of some sort of visual indicator maybe, in my area, basic training needs addressing to make any sort of difference in the future.

 

[Fullticket]

On a practical note, in our local hospital the loo rolls are hidden in metal boxes and you pull sheets out of a central hole. Hospitalised for tests, Mum was able to take herself to the loo but unable to work out where the paper was - and that was on a dementia ward. During end of life care, having suffered a stroke and having, essentially, a blocked bowel that had gone septic, I arrived to find a nurse attempting to feed her. So should she have had a sign with, e.g. a butterfly for dementia, a rabbit for stroke and a bird for a physical problem?? Ot should we encourage the staff to read the notes?

 

[Shedrech]

hi @e.sutton
maybe a read round the forums here may give you an idea how it can be in hospital for some folk
eg this thread

Dad and stepdad

I would like to firstly add that I was so lucky to have had 2 wonderful dad’s. Both totally different, but lots of love, and very differing views of life. But I loved them both! My poor stepdad, who I posted about his struggle with dementia, unfortunately passed away last May 2020, after a long...

forum.alzheimers.org.uk

 

[Lawson58]

On a practical note, in our local hospital the loo rolls are hidden in metal boxes and you pull sheets out of a central hole. Hospitalised for tests, Mum was able to take herself to the loo but unable to work out where the paper was - and that was on a dementia ward. During end of life care, having suffered a stroke and having, essentially, a blocked bowel that had gone septic, I arrived to find a nurse attempting to feed her. So should she have had a sign with, e.g. a butterfly for dementia, a rabbit for stroke and a bird for a physical problem?? Ot should we encourage the staff to read the notes?

The idea of using multiple symbols is actually a very good one. Just think about all the icons we use on our electronic devices and how we use them to access specific information.

I don't think that using pretty butterflies or pink rabbits is the way to go though as there could be far more meaningful and appropriate symbols that would be better signals for all staff.

When my son in law was in hospital recovering from massive cancer surgery, I noticed that on a whiteboard in his room there were some brief notes and a couple of handwriten symbols in red. All the nurses, physio, dietician checked it out as they walked in to see him. It was like a shorthand summary of his immediate needs and if there was something more they needed to know they would check the notes in the relevant section. And most of the patient notes these days are massive and complex.

Obviously, training is overwhelmingly important to understand patient needs but until that happens, why not try some simple things that could be effective for everybody, not only PWD but other patients with special requirements?