Views on hospital care for people with dementia?

[Skye]

Hi Rachael, I'm determined to get this post done, I hope it will make sense.

Like most places we had reports of terrible hospital experiences for people with dementia in the infirmary, and decided to do something about it. The scheme was a combined operation beween local branches of Alzheimer Scotland, User and Carer Involvement, and the nursing department of the University of the West of Scotland.

As well as increasing the proportion of dementia care in the training of student nurses, we recognised that senior staff on the wards could also benefit from some training. We set up a course, and invited ward staff to enrol. This would be on day release, and would be regarded as work time, and paid as normal.

It involves one day a month for a year, with projects to be done in between. The teaching is informal, with group activity, role play, amd visits to day centres and nursing homes. Carers also come in to tell their stories.

We're now in the third year, and the impact on the wards has been tremendous. Once training is complete, the champions are expected to cascade what they have learned to others on their ward, and encourage them to take part. In fact, the graduates of the first course set up their own follow-up group to encourage each other, and members of the second cohort have now joined them.

It's hugely successful, and other areas in Scotland are watching with interest.

On your latest question, we've also devised a hospital satisfaction questionnaire -- well two actually, one for the person with dementia if capable of filling it in, and a second version for carers. This hasn't been properly evealuated yet, but it should be helpful in finding which areas still need to be addressed.

We're not perfect, but we are trying!

PS We're still trying to get hospital doctors to come on the course, but sadly with no success so far. But then, they already know it all, don't they?

[Tender Face]

Actually, on a slightly different vein, could I ask your views on a question to do with involving people with dementia in my research please?

I can only, of course, offer my own opinion and an example from my own experience. Sorry, this could be a long one!

Firstly, I think it’s imperative that the dementia patients themselves are included as far as possible in all these research projects………….. That in itself can be a Catch 22 - that the very people whose voices need to be heard may be unable to voice their opinions and experiences for various reasons - not least their stage of dementia/ability to communicate etc. In which case, I feel it is their right to have a carer/relative/NOK/advocate - anyone who might be able to represent their views - act on their behalf to avoid such exclusion.

That in itself presents a difficulty …. Would the views expressed on someone’s behalf be from the perspective of the person giving such view? Is there someone available who can objectively put forward the views of the patient (not tinged by their own thoughts) … and - if they have been victim of mine and others’ experiences of being generally ‘banned’ from hospital wards except at specific times - would that person be able to answer questions posed about care given when they have not been (allowed to be) present during the majority of time ‘care’ is delivered?

Then there are people like my mother - who even in early stages of her dementia would appear quite eloquent and lucid and times - and sorry to say it - talked absolute gobbledy-gook - even though it came out as quite articulate at times. (How often has it been mentioned on TP how someone can ‘raise their game’ for professionals etc?) … and my mother admitted to me half the time she didn’t understand what people were asking her so she just smiled and said ‘yes’ or ‘no’ randomly and hoped she got it right …. Quite charming in some respects - but another reason I was furious I was not allowed generally to be present during ward rounds and consultations once she was admitted as an in-patient! In essence, for my mother (and any dementia sufferer like her) to have been included in research (alone!) would have needed someone known to her to validate her responses where she was able to give them.

I wonder, too, the validity of trying to pose standardised questions to people at various stages of their dementia, and that research interviewing needs to be very fluid to suit individual needs and capabilities. (Just as in the person-centred care many of us scream for!) What validity ‘anecdotal evidence’ has in academic research I don’t know but somehow feel it‘s an essential part of gathering and presenting information.

Mum was ‘selected’ to take part in a research project (Manchester Uni) during her brief time in hospice care. By this time it had been recognised without me having to point it out (hoorah!) that she lacked capacity to give consent and I was approached for consent as NOK. As you say, the context and scope of the research was fully explained to me. As best it could be, it was explained to mum - she may or may not have briefly understood but offered no objection and I was asked to sign the consent forms. In this case, the research did involve accessing mum’s medical records and ongoing consent to do so to end of life, however far off that might have been.

I do wonder there is a not-so-subtle difference in research and ethics around consent which requires access to very personal and usually highly confidential information or that which is ‘canvassing opinion and experience’?

Rachael, once again - I applaud you for asking the questions …… if only we can get hospital staff to do the same!

Regards, Karen, x

[Tender Face]

We're not perfect, but we are trying!

What else can we do Hazel? ... Rome wasn't built ... and all that ... but if enough people are prepared to keep digging out for the foundations .... who knows?

Mary...

How on earth do you ever get it out of your mind?

I don't know you ever can, Mary. (I can't) But somehow trying to make a different path for others salves something for me ... it will never compensate for what our mums went through - but perhaps some scrap of good will come out of it? And that might make it less painful and more meaningful ... not to mention - I know this is what mum would want me to be doing!

Love, Karen, x

[maryw]

Karen, as ever you sum it up so well.

Skye, amazing work - so glad you posted about it

[danny]

Hazel,what you are doing in Scotland is amazing.

Karen,do you want a job!


With regards to dementia training in the hospitals,don`t forget the cleaners and the CEO.

[RachaelK]

Hi again,

Hazel, what an interesting and incredibly valuable project - thank you so much for sharing it. It's very encouraging to hear how successful it has been, and to hear nurses wanting to take it further. You must have had a lot of support from those in charge in order to influence student nurses training and to negotiate a day a month for nurses to be trained - no mean feat when they are so busy I would imagine! Sounds like there are lots of interesting things happening in this area in Scotland - I hadn't heard of your project before but know that the Dementia Services Development Centre in Stirling have also done some work and training with hospital staff: www.dementia.stir.ac.uk

Thank you again Karen for some incredibly helpful and insightful responses. I didn't want to influence anyone by giving my views on involving people with dementia in research, but I think you make some really important points. I'm hoping that by spending a lot of the time on the wards and by watching what happens I can get a good sense of what hospital is like for people with dementia, even if some of those people may struggle to put it into words themselves. I'm also hoping that, by being around so much, I can try and ask people questions about their experiences when they are feeling at their best (hopefully helping a bit with what you say about people's abilities fluctuating).

You make a really interesting point when you say that relatives will find it hard to comment on care they haven't seen - I hadn't thought about that & need to give it some more thought. I also agree that anecdotal evidence is really important - I'm hoping to enourage people to tell me their own stories from their own perspectives so very 'anecdotal' in a way , but hopefully also very powerful and, as you point out, hopefully a better way of helping people with dementia to tell their stories....

So I guess you can tell from the above that I feel that people with dementia should be offered the opportunity to be involved in research, even if making the decision to be involved may be difficult for them. But I was keen to know what others thought - I guess we might not all agree on this and it's always interesting to hear different view points.

Danny - very helpful to have mentioned involving cleaners & domestic staff. I will make sure I include some of these staff, I guess they are often very involved in important events like meal times and spend a lot of time with or near to patients. Thank you :-)

Lastly, Karen you ask a really interesting question about what is the difference between research and canvassing opinion.... I'm not sure there is an easy answer to that? For example, I've been trying to canvas opinion but have asked questions that could easily be asked in a research project. Perhaps it depends partly on who is asking the questions and what they are going to do with the answers they get? e.g. I'm not going to quote any of your comments or write them up in a research report, instead I am going to use your collective opinions to help me plan and design my research project. And I guess a hospital ward could also ask similar questions to mine but they might use the answers to make their care better, so that could be called service evaluation not research? Not at all clear though really, so a really interesting question to ask, and expecially important when, as you say, we are talking about highly personal, potentially upsetting, and confidential information.

One thing I'd say to anyone is to always ask if you are not sure. Anyone who is asking for personal information should be able to explain to you exactly why they are asking, who has given them permission, what they are going to do with your information, and how they are going to protect it. And they shouldn't mind you asking.

Thank you all again for your help,
Rachael

[Skye]

Hazel, what an interesting and incredibly valuable project - thank you so much for sharing it. It's very encouraging to hear how successful it has been, and to hear nurses wanting to take it further. You must have had a lot of support from those in charge in order to influence student nurses training and to negotiate a day a month for nurses to be trained - no mean feat when they are so busy I would imagine! Sounds like there are lots of interesting things happening in this area in Scotland - I hadn't heard of your project before but know that the Dementia Services Development Centre in Stirling have also done some work and training with hospital staff: www.dementia.stir.ac.uk

Hi Rachael

Yes, you're right, the Director of Nursing is fully behind our scheme, and takes a personal interest in it. She's also committed to the Scottish Government Patient Focus, Public Involvement (PFPI) scheme. I see her often at meetings, and have to ask which particular hat she's wearing that day. She's very dynamic, and very supportive of her nurses.

The Stirling centre has also been involved, we went up to Stirling and had a workshop with Prof. June Andrews amd toured the Iris Murdoch Centre, and she has been down to talk to us. In fact my tag line is a quote from her.

[Tender Face]

Not specifically dementia related but proves some concerns expressed on this thread about bureaucracy in the NHS – Equality and Diversity Action plans?– humph – how about they try devising them and implementing them for patients first?????

And if people generally are going to be confused - what hope for our dementia Loved Ones?

http://www.dailymail.co.uk/news/arti...-specific.html

Karen, x

[danny]

No suprises our trust is involved Karen.

Now what about that job

[Tender Face]

Haha Danny – a few hundred miles nearer I’d be banging on your door for a job!!!!

While I’m at it (humph – soapbox etc ) http://news.bbc.co.uk/1/hi/health/8654929.stm

Now, Hester flippin’ Blumenthal, huh? How much has someone been paid to dream this one up as a solution?

And isn’t it frightening the Patients Association is gunning for protected mealtimes when others are screaming for the reverse????

Sorry, no time for a job, Danny – got more rattling cages to be done .....

Rachael – hope you don’t mind if you are bobbing back this seems the best thread at the mo to ‘park’ any relevant links for yourself or anyone else looking at hospital care issues for dementia patients ... .. hope it’s going well.

Kaz, x

[danny]

Go for it Karen,I love this thread

You are putting into words everything that we all think but can`t say.
Go for a job as an inspector with the CQC.

[Tender Face]

Sorry, but I am blazing here – been scribbling away on a particular project of my own but this ‘Blumenthal’ project has really got me going .... How on earth can we be investing money in this kind of project (coz someone is paying for it from somewhere?) when we haven’t even sorted out the basics of how a dementia patient actually gets food from plate to mouth during hospital mealtimes? (Don't start me off on standard mealtimes!!!)

OK I know it’s aimed at ‘elderly’ (older persons actually, Mr Blumenthal et al, to be politically correct) ..... not all of whom will have dementia ... but we do know at least 25% of hospital patients do have some degree of dementia ....... and some might be quite capable with utensils ... whilst others can’t even recognise they have food in front of them .....

How rich is that one? Ooops – sorry not eaten their dinner again? – but at least we can scientifically prove it was tastier than the last one they left!

AAAaaaaaaaaaaaagggggggggggggggghhhhhhhhhhhhh

Sorry, just having a ‘moment’...... Kaz,

[Padraig]

Karen,
I well understand the term 'the elderly' and it bothers me as I fall into that category. It's as though we are a separate class of people. Does it never occur to those 'in charge' that they will some day become 'elderly'? When they do, and have gained life experiences, they'll find no one wants to listen. We are all in this together and 'our' old ones are parents and grandparents; part of one society.

[Tender Face]

Hi there Padraig - have you seen jenniferpa’s signature? (Should have complimented her before on it - it is an outstanding quote!)

Hmmm, yes, I confess I struggle with whatever happened to ‘Senior Citizen’ - I liked that - aspired to it as something to look forward to as I got older - if I had to be ‘categorised’ later in life at least my ‘status’ or ’title’ would have some element of respect about it ……

Which is why I am so uppity about this nonsense with what to call hospital staff (link above) and being all PC/gender correct … when they haven’t embraced the new thinking behind what to call their ‘elderly’ patients …(and I personally like ’elder’ - rather than simply ’older’ - think that carries some respect?) another example of staff or other priorities apparently coming first in the NHS … patients somewhere down the line as ‘also-rans’ …..

Sorry, I am in complete ‘humph’ mode still on these issues ….

Karen, x

[LEEANN4832]

I think that all hospital should have training for all there nurses on hoow to cope with dementia ....nurses ont understand the illness and just see the illness and hav no patients to deal with it and thn become frustrated so they leave them aside and this is a form of neglet because if they had the trainig and the knowledge so they could understand each individual and there needs and wants ..they would see a person and understand they have a choice they need to b listened to and they need to remain a human being and have a sence of wellbeing.