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WOMAN'S HOUR
TX: 14.01.08
DEMENTIA: IS  IT GETTING THE PRIORITY IT DESERVES?

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TX: 14.01.08 - Dementia Strategy

PRESENTER: JANE GARVEY


GARVEY
Now as part of Radio 4's Care in the UK month we return now to the subject of dementia. The plain facts are well known to many of you of course - 700,000 people in the UK have been diagnosed with the condition, two thirds of whom live at home. Campaigners have long argued that the condition simply doesn't get the attention or the money it deserves. Surely that will change now, we know the government is working on its first ever national dementia strategy. The man in charge of that is here, he's Professor Sube Banerjee, also here with me in the studio Barbara Pointon, whose husband Malcolm died after 16 years with Alzheimer's and Dawn Warwick from the Association of Adult Social Services. Good morning to you all, thank you all for coming in.

Barbara, we want to hear, first of all, about your own personal experience. You and Malcolm lived for a very long time with Alzheimer's what if anything would have made that period of time easier?

POINTON
I think about five things spring to mind, very general, the first would have been an earlier diagnosis, he was treated for depression for two years before he got the right diagnosis. And that says something about the fact that GPs do not have dementia as a core component of their undergraduate course, nor do general nurses and that's something that ought to be put right straightaway.

GARVEY
How old was Malcolm when he was eventually diagnosed?

POINTON
He was 51 when he was diagnosed.

GARVEY
So young, which might be why the doctor didn't ...

POINTON
Yes I think he was very surprised that it was Alzheimer's but there were parts of his behaviour that actually were very telltale Alzheimer's that weren't picked up.

GARVEY
Now your other four things.

POINTON
My other four things is first of all - four things are - a better understanding and training for everybody who comes into contact with the elderly, right from care workers, the staff in nursing homes, accident and emergency, general wards and even down to people like librarians or whatever who deal with people on a day-to-day basis. And I think the underlying thing that I feel is needed is more education training and especially understanding of the illness, particularly by the people who are doing the hands on care. And in that I think it's expressly to deal with perplexing behaviours which is the one thing that I think that gets - certainly I found most difficult.

GARVEY
And also I think you found difficult the fact that you had to keep on telling your story to how many different individuals?

POINTON
We had 26 different professionals in both health and social services involved in Malcolm's care over 16 years and I'm talking not about different people who are doing the same jobs, I'm talking about 26 different jobs were involved. And the one thing that would have helped me more than anything would have been for - to have a dementia care advisor - is the only person - only description I can think of. - allocated to us at the very beginning, at the point of diagnosis, and be by our side, they'd be our first stop for any problems and could maybe solve a lot of problems if they had this base of knowledge about dementia care. And then call in the experts as and when are needed but only when it's gone beyond the reach of the dementia care advisor, that would have helped enormously. And palliative care - there was no palliative care available for people dying of conditions other than cancer, in my area ...

GARVEY
Which was your area?


POINTON
South Cambridgeshire. And the other thing was just simply the complexity of the system and I spent more hours and tears battling with the system than I did actually having anguish over caring.

GARVEY
Yeah, it sounds a pretty desperate series of circumstances. Dawn, how much of what Barbara says do you recognise and do you acknowledge?

WARWICK
I think we have recognised this over the years and so the things that we're putting in place are specifically to respond to experiences such as Barbara's are that we have joint teams, so we have the range of healthcare professionals and social care professionals in a - what we call - an integrated team, so there's a lead professional who will work with people with dementia. I think the experience as well about the early diagnosis we also recognise as well and it's absolutely vital that we work together to support people when the - when dementia is first diagnosed and to advise people on what's available for them, so that they don't have to go through the anguish and distress of working their way around the system.

GARVEY
Professor Banerjee why is it that we still have general nurses and psychiatric nurses, why don't people know enough about both sides of the spectrum?

BANERJEE
We have general and psychiatric nurses separated because there is a different skill set that's needed to work with people with mental disorder and people with physical illness. Now where you're working with older people there's often the possibility of both things happening at once, especially with dementia. So I think what Barbara says about there needing to be a core set of skills for all those professionals who work with older people that specifically includes an ability to understand the impact of dementia on whatever it is you're trying to do. So if you're an orthopaedic nurse then dementia will affect the way that an individual recovers from having their hip repaired, for example. If you're a general geriatric nurse in an acute hospital then whether an individual has dementia will depend - will influence how they move on from the hospital. And if you're a nurse working within a community mental health team for older people then you need to have an even higher level of skills, you probably understand the dementia there but you still need to have an understanding perhaps more of the physical health side of things. So I think it's about making sure that everybody who has access to older people - who works with older people because dementia is predominantly a disorder of later life actually has an understanding that enables them to identify possibilities for improving the quality of care for people with dementia.

GARVEY
But at the moment you accept that the situation is far from perfect and that too many people are going through experiences like Barbara's?

BANDERJEE
Barbara's experiences are not at all uncommon and one of the reasons why the national dementia strategy has been set up and why we're working on it at the moment is to try and transform a system whereby the provision of care across England at the moment is patchy to one whereby there is a dependable good quality response, no matter where you live. There are excellent - there are some really good examples of excellent quality care all over the place, you just can't predict whether you live in the area where you're going to get those or not.

GARVEY
Government strategies are quite many and varied, what is going to change on the ground and when will the changes be made?

BANDERJEE
These are vital questions. I suppose the first point that I'd make is that it is vitally important for dementia that there is - that has been acknowledged as a national health priority.

GARVEY
Well that's something but when is it going to change?

BANDERJEE
It's not just something, it's something terribly important because it's the first step to change and I agree that if it were not for the fact that this was not only developing a national dementia strategy but also an implementation plan for that dementia strategy then I would be concerned. The dementia strategy is underway, we're at the moment working with a wide group of people to be able to generate the exact content of that and I can tell you what the broad areas that we've already identified as needing help, because they do correspond well with what Barbara has said. I can say this to you if that would be helpful. But the time we will be delivering the strategy for consultation, so for public consultation, before the summer, so that's in sort of May, June, July it will go out for public consultation. There will be a three month public consultation, it will then come back to the group that's been working on it, we'll take account of all of the comments ...

GARVEY
Where are we now is this 2010 or ...?

BANDERJEE
It brings us through to 2008, it brings us through to September, October of this year. Now actually that's quite a short period of time and the reason why we've been able to do this work in such a short period of time is because there is tremendous consensus in what people with dementia need and what changes we need to make.

GARVEY
Okay Professor, thank you very much, I don't want to put you on the spot too much but people are concerned and Barbara, they'll be people listening who are going through now what you have been through. If you had just a couple of bits of advice to pass on to people who are caring for Alzheimer's or dementia sufferers.

POINTON
A couple of practical things: One is go with the flow, however bizarre it seems. Secondly, people with dementia in particularly the middle phase of the illness time travel backwards and if they can't enter our world we have to go and have some wonderful adventures in theirs and it is one of the things, of course, which is often very distressing that elderly people do not recognise this old bat who's come to visit them because in their head they're 25 and they're looking for a beautiful lady who is their wife and of course this is why they must take children and even grandchildren. And I just think that some of the most bizarre behaviours, like there was a guy who stripped off naked every afternoon in the care home where Malcolm was and it was thought to be inappropriate sexual social behaviour but in fact he was 21 in his head and when he was 21 he used to row for his college boat and so every afternoon he'd be taking his clothes off to put his rowing strip on. So the answer is there, don't run for the medicine bottle to try and calm down this man with extraordinary behaviour, just find out the reasons behind the behaviour and then provide the activity that satisfies. And he would have played for hours rowing if only the right equipment had been there.

GARVEY
Fascinating, Barbara Pointon thank you very much indeed for coming in, also to Dawn Warwick thank you and to Professor Banerjee, the best of luck with your strategy but no doubt it is a subject we'll return to here on the programme.




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