Views on hospital care for people with dementia?

[RachaelK]

Dear all,

I am a researcher from Leeds University and I am planning a research project to look at how general hospital care could be improved for people who have dementia.

I would like to make sure that the research looks at the areas of hospital care that people with dementia and their relatives think are important. I would therefore be very keen to hear from anyone who would like to share their views on hospital care via this forum. Your thoughts on any aspects of hospital care would be welcomed, but I would be particularly interested to hear your views on the involvement of relatives/carers in the hospital care of people with dementia.

e.g.
• Do you think that relatives should be more involved in hospital care?

• In what ways do you think they should be involved?

• Do you think involving relatives in care would benefit or be welcomed by people with dementia or their relatives?


Thank you taking the time to read my post. Any responses that I get will help me to make sure that the research covers the areas that you think are important.

With best wishes,
Rachael K


ps – Just so you know, TP have given me permission to post on this forum.

 

[Norrms]

Hiya

Sorry to burst your bubble a little but its the nusring staff who need re training in dealing with dementia patients and not the carers or relatives. The carers and relatives work so so hard looking after people with this horrid disease but whenever a demetia patient is taken to hospital by a carer or relative, the usual way it goes is that the majority of nusres have no idea how to deal with these patients. Dont get me wrong, this is no way the nurses fault as if they are not trained in this then how can they know??
More interaction with relatives/Carers and the hospital staff will come with more understanding. I hope this helps you, best wishes, Norrms and family.

P.S. I was diagnosed with early onset of Alzheimers at aged 50, i am now 52

 

[Tender Face]

Hello Rachel .. I am always pleased to see work in this area … and don’t take this the wrong way - but I think the answers to your first and third questions are pretty obvious!!!!! Or at least if the research is directed at an audience of carers only - or are the same questions being posed to hospital staff and you expect differing views?

Bigger concerns, for me, are around the care of patients who don’t have relatives/carers able/willing (for whatever reasons) to visit and how change might be achieved for them?

I know where Norrms is coming from - I am sure I am not the only TP member given a lot of input to Louise Lakey (AS Policy Officer) over the last 18 months or so with regard to hospital care for dementia patients .. most recently in terms of nurse training. One point I made in that was wishing to see nurses more ‘empowered’ to be able to over-ride ‘hospital rules’, be that around restricted visiting, managing meal-times to suit each individual’s needs etc … and in order to achieve that they themselves need the training and recognition of the responsibility of their role outside attending to ‘acute medical needs.’

Can I ask - yourself and AS - if AS have been pioneering so many initiatives and research in this area (Counting the Cost report/This is Me initiative etc etc) what makes this research project different? Are we not in danger of re-inventing the wheel?

I am more than happy to help - but wonder participants, like myself, are not ‘re-gurgitating’ the same old stuff over and over - or is that what needs to be done until our voices are heard?

All meant to help constructively ….and more than happy to help, but I think I would like to understand more what this project is trying to achieve that hasn’t already been done by AS?

Best wishes, Karen, x

PS: Do you have an email address for people to respond to if they wish to participate? I doubt all I have to say (once I really get going!) would fit in a PM!

 

[Norrms]

Mee Too Please !!

I would also like an e mail addy to write to if you would like me to particpate from "My side of the fence" best wishes, Norrms and family xxxxxxxxxxxxxxxxxx

 

[jenniferpa]

Hopefully Rachel will clarify but I believe that what she is doing at the moment is simply planning the research, not conducting it.

 

[RachaelK]

Hi Norrms, Karen & Jennifer,

Thanks very much for getting back to me so quickly and for being so honest, your comments are much appreciated. You posed me quite a few questions, so I’ve ended up writing a bit of a long post! I’m sorry, but I didn’t want to ignore any of the points that you made.

Jennifer – you’re right that this is a piece of research that I am still planning, so the questions I asked in my post are not my research questions. Sorry, I should have been clearer about that. What I was hoping to do by posting was to find out what people with dementia and their carers thought about my research idea, before I actually start the research. As Karen says, there is no point in my trying to re-invent the wheel so, as suggested, I'll explain a bit more about what I’m hoping to do and how it might build on the research that Karen mentioned.

From the existing work on hospital care, it sounds like many carers of people with dementia want to be more involved in care. What is not well understood (I don't think) is how carers could be involved (e.g. providing info, hands on care, helping to make decisions etc?) and, perhaps even more importantly, why this doesn’t happen at the moment. Karen, you say that it’s obvious that carers should be more involved – do you think the next useful step would then be to find out why it doesn’t happen in practice? My thinking was that it is difficult to make recommendations about how staff should work more closely with carers if we don’t properly understand why it is that they don’t work with carers now?

In terms of how to go about finding that out, my plan was to do as you suggest – to speak to hospital staff, as well as to carers. I was thinking of speaking to staff on wards that look after people with dementia and to the carers of people with dementia who are currently on those wards, to get a really up to date picture of what is happening. I would also like to spend some time on the wards to speak to some patients with dementia and to see exactly what does happen when carers try to get involved in care.

I also wanted to say that it was good to hear your views Norrms. I completely take your point that training for staff is really important, but I wondered if encouraging staff to work more closely with carers might also help to improve their understanding of dementia? I also wondered whether you thought people with dementia would welcome their carers being more involved in their care? I wouldn’t want to pursue an idea that people with dementia wouldn’t welcome...

Lastly, Karen – I think you’re absolutely right that a big question is how do we change things for people who don’t have a carer? You’re also right to point out that my project wouldn’t help with this, but there is a big project just starting in Leeds/Bradford that might. The project is looking at whether volunteers could help provide care to people who are at risk of becoming more confused whilst in hospital (which includes people with dementia). The plan is for the volunteers to help with things like ensuring patients get enough to eat, drink, are encouraged to move about, take part in activities etc.

Sorry again for such a long post, but I hope it at least answers some of the questions that you asked me and helps to explain what I was thinking of doing in my research project. If anyone does have any further comments on any aspect of what I am proposing to do, I would be very interested to hear them.

With best wishes,
Rachael


ps - you are right that it might be easier to email each other, but I was asked by TP to keep my posts to the forum because of their rules about research studies that don’t yet have ethical approval (as I’m still planning mine it doesn’t have ethical approval yet). I’ll check and see if emailing each other would be a possibility - thank you for the offer

 

[beech mount]

I aggree 100% with what Norrms has said,my wife at 60 years old has been put on a ward for old age people,non of the staff have any knowledge of AZ,they should make a point of educating themselfes nevermind retraining.
When i was working at my trade if i did not know how to do something i would find out for myself, a lot of nurses are not interested in learning and in this particular ward will only do the minimum.
Sorry for ranting,but i have reason to,
John.

 

[Norrms]

Well Said

Well said john, and you are quite right, until staff are properly trained up in all aspects of dementia things will never improve, as i have said before its not the nurses fault but the systems AGAIN!!! Hope you and your love,y wife are both doing ok my friend, best wishes, Norrms and family xxxxxxxxxxxx

 

[Norrms]

Hiya

Thank you for your quick reply Rachael and i do hope we will be able to e mail each other. I for one will be very interested in what you are doing (for as long as i am able to) and would like to follow your progress. I agree that some carers would like more of a say in things and how their loved ones/clients are cared for as we all know there is a lot lacking in that department at the moment. It can only be good for nursing staff to understand more of this devastating disease so to deal with people better but i can only imagine a small amount of carers wanting to be involved with this on a personal level as they have so much to do and worry about in their own circumstances. Those who would agree to it then we all wish them well and hope they make a difference, they are truly wonderful people. But as for helping the nurses understand the Dementia patient and all its complexities shouldnt that sort of training be given on a proffesional basis ? And not just volunteered? Or is this just another way of cutting back on spending? Why pay for it when you can get it for free? All the people on here and outside this forum i know do what they do out of sheer dedication and undying love for thier loved ones ect. They didnt sign up for this but they do it because they want to and are the most treasured people in the world. Nursing staff are also Angels in their own rights but they live in the ever changing world of Traoing courses and so should be trained in this area, hope this helps, best wishes, Norrms and family xxxxxxxx

 

[RachaelK]

Dear John - don't apologise for ranting at all, it sounds as if you have every reason to. I'm very sorry to hear that your wife is on a ward where the staff do not understand her needs. I wish it was the first time I had heard of this happening, but sadly it is not. I hope that your wife is well again very soon and doesn't need to be on the ward for long.

Your situation also makes me wonder, what is a carer supposed to do when something like this happens? As both you & Norrms say, staff training is extremely important, but John your sense seems to be that the staff aren't interested in understanding AZ and unfortunately any training is not going to come in time to help you and your wife. I've heard carers say that they've felt they’ve had no choice but to be on the ward to ensure that their relative gets looked after, but as Norrms rightly says many carers may not be able to do this and nor should they have to or it be expected of them....

Norrms I also 100% agree that it should not be the responsibility of carers to teach staff how to respond to people who have dementia – you’re right that training should be provided by hospitals for all their staff. I just worry that, whilst training would be extremely valuable, it is not going to increase the number of nurses or the time they have to care for patients... Perhaps what we need is not one solution but a combination of things? E.g. training for all staff but combined with other solutions that deal with the problems that training can’t, e.g. volunteers to help nurses to provide care and the opportunity for carers to have input into care, if that is what they and the person with dementia want? (or perhaps I’m living in a dream world!)

I also completely take on board your point Norrms that carers have more than enough on already with the difficult work they are doing. You are making me realise even more how important it is that any research I do focuses on giving carers a choice and does not make people feel like they should get involved in hospital care, unless it is something that they want to do. Thank you.

Thank you both for your responses
Rachael

 

[RachaelK]

Dear John,

I forgot to say that, as Karen mentioned in an earlier post, the Alzheimer's Society have put together a leaflet designed to help staff who are looking after a person with dementia in hospital.

It's a short series of questions that are filled in by the relative/person with dementia that are supposed to then help staff to understand that person better. It covers the person's needs, likes, dislikes, etc.

Of course, you know your situation better than me, so it may not be helpful for you, but I thought I'd mention it just in case. If you want to take a look you can find it through this link: http://alzheimers.org.uk/site/scripts/documents_info.php?categoryID=200149&documentID=1290 The leaflet is called "This is me".

All the best,
Rachael

 

[Tender Face]

Hi Rachael - no apologies needed - rather a thank you for a detailed post and more background.

I like the thinking of ‘digging deeper’ … from both sides … my personal view is a lot of thinking needs to be changed (not necessarily by nurses many of whom clearly strive against impossible bureaucracy in their roles) …. and sometimes have to recognise ‘one small step’ and all that!

I despair senior medics can imagine someone with memory loss (as a minimum) are capable of engaging in ‘ward round’ consultations let alone decision making .. And unless communication is achieved with carers (when they are ‘banned’ during ward rounds!) how on earth a dementia patient can be expected to manage these situations and understand what has been said/being proposed ….. ???? Just one small example …..

Just another thought to throw into the mix …… when you say …

I was thinking of speaking to staff on wards that look after people with dementia and to the carers of people with dementia who are currently on those wards,

....

One reason I was so thrilled to see the RCN and AS working together on training for ALL nursing staff (not just dementia nurse specialists) is the statistic that 25% of patients in hospitals have dementia … now, unless people know otherwise we have not reached the Utopian state where dementia patients, admitted for medical needs other than dementia, are allocated to ‘dementia specific’ wards and associated appropriately trained staff. As specific examples, my mother was admitted to a geriatric ward (for medical investigations) - where one might have hoped for a higher level of understanding amongst staff of dementia issues? - perhaps given the prevalence of dementia amongst patients on such wards might be far higher than the overall 25%? I confess I really expected more understanding of my mother‘s needs without me having to ‘scream up and shout‘…. I myself spent time on geriatric and orthopaedic wards in my 30s - admitted with a neurological condition - but as there was ‘no room at the inn’ on the relevant wards for me ….. How many people face the same problems because of simply ’bed-management’ in a hospital ….?

And therefore how many times might a nurse on a general surgical/medical ward be faced with addressing the needs of a dementia patient ….. ? In other words, all require at least awareness training … and hospitals - if these kinds of research projects are to achieve any change need to recognise that dementia patients may need different input from their carers … the gastroenterology wards may well need ‘protected mealtimes’ - but what happens if one or more dementia patients are amongst those on the ward (whether they have GI problems or are there just because that’s the only bed available?) and ‘rules’ for them and their carers necessarily need to be different to other patients and then how is that managed?

Sorry…. more things for you to think about.

Limiting the scope of your research might be key? But here's hoping you are another key to the 'revolution'!

Kindest regards, Karen, x

 

[Charlyparly]

Hi Rachel,

Firstly – I’m not the carer of a relative but have experienced some of the difficulties you mention.

There is a tendency for doctors and nurses etc to take the attitude “we know best” or that knowing the finer details doesn’t really matter.

For example, one gentleman was “very disruptive” at night and ward staff wrote in his notes about him wandering, disturbing other patients and requiring a sedative to help him settle. If the ward staff had just taken the time to speak with his wife in the first place, she would have told them he likes to know what time it is and without being able to see a clock, he feels unsettled and anxious. She had told staff about this when he was admitted to MAU but nobody thought it relevant enough to make a note of. Even worse, nobody thought to mention it to his wife until he had been in hospital for a number of days and she asked why he was so drowsy.

I’ve worked in a number of different care settings and one thing I end up spitting feathers over is the way some hospital staff don’t always speak with carers about the person’s general background, any behavioural difficulties and how best to deal with them.

On the whole, they fail to appreciate how each and every person has their own little traits, likes and dislikes which only a carer will know the ins and outs of like the back of their hand.

 

[beech mount]

I have just returned from seeing and helping my wife in hospital,i despair of the standard of nurseing at this place.
While i was there my wife was given a bath and had her hair washed,what happened i do not know,but she came out of the bathroom in tears it took me an hour to calm her and she is now affraid of this "nurse".In a bed near to my wifes there is a very old lady who can barely move and needs full asistance this same "nurse" brought her her meal put it on the table and said very loudly "sit up and eat your meal whats wrong with you,dont you want it?should i take it away?" On the notice board above the bed it says "Full asistance needed"
I have now put in a complaint about her and told the sister to keep her away from my wife,i only hope my wife is not made to suffer as a result of my action.
I must add my wife is the only one on this ward with AZ.
John.

 

[Charlyparly]

I have just returned from seeing and helping my wife in hospital,i despair of the standard of nurseing at this place.
While i was there my wife was given a bath and had her hair washed,what happened i do not know,but she came out of the bathroom in tears it took me an hour to calm her and she is now affraid of this "nurse".In a bed near to my wifes there is a very old lady who can barely move and needs full asistance this same "nurse" brought her her meal put it on the table and said very loudly "sit up and eat your meal whats wrong with you,dont you want it?should i take it away?" On the notice board above the bed it says "Full asistance needed"
I have now put in a complaint about her and told the sister to keep her away from my wife,i only hope my wife is not made to suffer as a result of my action.
I must add my wife is the only one on this ward with AZ.
John.

Oh John I’m so sorry. I’m glad you’ve put in a complaint but am just sorry you had it to do in the first place.

 

[maryw]

How can you be a nurse without compassion and sensitivity?

 

[beech mount]

I should add to what i have posted that my wife could have been home more than a week ago but we are waiting a report by the OT on her needs at home,but no one can tell me when this will take place meanwhile she has to suffer.
John.

 

[Winnie Kjaer]

When my husband had his major stroke and went to a local rehabilitation unit I was told by the matron before he came home that it was my right as his carer to continue doing the caring during future hospital stays and that is what I have always done. I have never had any objections and staff have always been extremely grateful for my presence and if anything possibly sometimes even taken advantage of me. I have never been told of restricted hours for anything but usually been there from 9am sometimes earlier to 11pm. They have even fed me, which I never expect nor take for granted.

 

[larivy]

when mum was in our local the other week they put her in a side ward so i could stay with her they were gratefull i could do things for Mum and give them more time to see to the other patients they always asked if i minded doing things feeding,toilet ect in all it worked well for all of us. it is the hospital where Mum goes to the memory clinic and the nurses told me they were having training in the clinic so they could understand more it seems to be working larivy

 

[Tender Face]

John, I’m so sorry to hear this, but not at all surprised. I had OTs trying to organise mum’s discharge to ‘independent living’ when it was becoming increasingly obvious there was no hope of her ever being able to live alone again (indeed needed hospice care and assessment on discharge). There are just so many anomalies - on the one hand - patients seemingly ‘rushed out’ of hospital without proper care packages (for fear they contract something worse than they went in with, I assume?) … others with discharges delayed over such practical matters ……

Conversely, however, just IMHO, I think it’s important to recognise experiences that Winnie and Laviry have just shared. Obviously, some hospitals and units and staff get things very right …. And while some of us have bad experiences we share and hope to improve on them …. it’s important to recognise that the ‘good’ (and even better) exists too. It would be nice to take the learning from the good and disperse it to the not so good ….

I don’t know - because I’ve never done professional research - but I suspect more participants get involved (like myself!) because they have particular ’issues’ they would like to see improved. It would be good to have a balance of respondents with very positive experiences and understand ’what works and why’ and share that too.

That would be a very interesting ‘fly on the wall‘ conversation between the matron who locks her ward doors until the second hand reaches the precise, prescribed visiting time and ’rules is rules’ approach … and the one who openly welcomes carers whatever tinme of day or night and includes them in caring as and when required by the very patients they are supposed to be caring for …..

Perhaps patients and carers and researchers and hospital/nursing staff are ‘talking’ to each other a lot now (which can only mean progress) when some of them simply they need to be talking amongst themselves and educating their peers from positive experience, rather than negative perception from ‘one side‘ or another? Powers of positive persuasion and all that …..

If that makes any sense ….????

Love, Karen, x