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TX: 28.04.08 - Dementia Drugs

PRESENTER: WINIFRED ROBINSON

Downloaded from www.bbc.co.uk/radio4
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ROBINSON
As you may have heard in the news today an all party group of MPs has called for an end to the widespread use of anti-psychotic drugs for people with dementia in care homes. These drugs were developed for conditions including schizophrenia, but they're given to tens of thousands of people with dementia as a powerful sedative, usually when these people become agitated, distressed or aggressive. The all party group on dementia says the government must curtail prescribing and include mandatory training on how best to help people with dementia for all care home staff as part of a new national dementia strategy for England which is due to be published later on this year.

Jeremy Wright, the Conservative MP for Rugby and Kenilworth, chairs that committee. How widespread then is the use of these drugs?

WRIGHT
Well we think it's extremely widespread. We can only estimate because it's extremely difficult to get an accurate figure of precisely how many people are taking these drugs but we think there are approximately 150,000 people who are taking the drugs. It's also very difficult to estimate how many of those are on those drugs appropriately but the best guess we can make, based on the evidence we've received, is that perhaps a half or two-thirds of those are on them inappropriately, so it's a very widespread problem.

ROBINSON
So you've got 150,000 people taking them, how many people are in care homes, what proportion of the population of the population is that?

WRIGHT
Well there are something like 244,000 people with dementia in care homes, that's of course the group of people we're most concerned with. So it's a substantial figure...

ROBINSON
More than half.

WRIGHT
... among those who are - who have dementia in care homes.

ROBINSON
Now you call the report - Always a Last Resort - which I suppose suggests that you think they're sometimes being viewed as a first option.

WRIGHT
Well I think that's very much the problem, that's our concern, that it's too easy for those in care homes to be prescribed these drugs when what should be happening is something more productive, something more centred on the individual and those are things, incidentally, which do happen in some care homes, we're not suggesting that there is wall to wall bad practice here. But we do think that this is an important problem because of the consequences of prescribing these drugs. If you are taking these kinds of drugs there are significant side effects and those side effects can include a doubling of the risk of mortality, in some cases with some of these drugs a trebling of the risk of having a stroke. In addition to that there is increased rigidity, tremors, frailty - physical frailty - which of course in the elderly can lead to falls, more admissions to hospital and the like. So it is not a risk free exercise, prescribing these drugs, that's why it must only be done in appropriate circumstances.

ROBINSON
You're pretty damning in this report and you talk about robbing people of quality of life - I'm quoting again - unacceptable abuse of human rights. Why, if that is so evident to you, is it not evident do you think to the care home staff?

WRIGHT
Well I think in some cases it's, as I said, very much an easy option but in others I think we have to recognise how difficult it is to manage some of this kind of behaviour and I wouldn't want - and I don't think any of us would want - in producing this report to understate how difficult it is to manage this kind of behaviour.

ROBINSON
And we're going to be hearing from the care home owners later on, but anyway.

WRIGHT
Absolutely, but I think that what good care home managers will say is that there are other ways of dealing with this kind of behaviour, ways other than resorting to these drugs in every case. But I do make it clear that we are not suggesting every time an anti-psychotic is prescribed for someone with dementia it is inappropriate, they're not, as you will appreciate, drugs which were originally intended for dementia, they are originally developed for schizophrenics but it isn't always inappropriate to use them, we're simply saying that we believe there is a huge amount of over-prescription.

ROBINSON
Well Jerry Wright, stay with us if you would.

The Alzheimer's Research Trust has drawn attention to the effects of anti-psychotic drugs on people with dementia and Rebecca Wood is their chief executive. She says these anti-psychotics were developed for people with schizophrenia, as we've just heard, and she claims that they double the risk of death, triple the risk of stroke for many people who have dementia.

WOOD
For people with mild symptoms the benefits of the drugs are actually extremely small but for everybody the real worry is that it causes people to die much earlier, on average six months earlier, and it makes them more prone to things like stroke and they hugely decrease quality of life, particularly through things like verbal fluency. The most well known is this whole thing about it being a chemical cosh, so the fact that people become dopey and unresponsive and don't move much means we're much more prone to things like pneumonia and infection. And if we do try and get up and we're dopey like this it means we're more prone to things like falls. So there are all sorts of reasons why it's a really big risk.

ATKINSON
So from a research point of view do you also agree with the parliamentary committee that these anti-psychotic drugs are being given to too many people and that the dangers are not being made apparent?

WOOD
Absolutely. I think that they're being given without enough consideration of what happens particularly to those of mild symptoms, the research shows there's no benefit actually. And to those with severe symptoms you have to weigh that against the fact that there's a huge loss of quality of life and that people will die earlier. So it's a really serious thing and I think it hasn't been treated as a serious thing, it's been given as a matter of course, we just need to look at the numbers of people - 70% plus - being given these sorts of drugs and probably more than that actually, that's probably on the conservative side. So it is a really serious problem and I'm very glad that the all party parliamentary group is looking at this.

ROBINSON
Rebecca Wood, the chief executive of the Alzheimer's Research Trust, talking to Carolyn Atkinson.

Jeremy Wright, the chair of the all parliamentary group on dementia, is with us. What then do you want to happen now?

WRIGHT
Well a number of things we think need to be done to ensure that these drugs are only prescribed in appropriate circumstances and I perhaps pick out three things that I think are most important. The first is that we really do need to have mandatory training in dementia for all those who work in care homes. At the moment you have to be trained if you're going to work in a care home in lifting and handling, in the fire regulations, you don't have to have any training on dementia. Now it's very important that people do have that training so they understand what they're dealing with. Secondly, we think it's extraordinarily important that you review these drugs. There are two routes by which people are inappropriately on these drugs we believe. The first is that they were inappropriately prescribed them in the first place, the second is that the initial prescription was appropriate but they've languished on them for far too long. That can be dealt with by better review, we think at a minimum three monthly. And the third thing I'd pick out is that we want to see friends and family, or in their absence an independent advocate, far more involved than they are now in the decision to prescribe and in the review of those drugs. Those are things which we think are extremely important.

ROBINSON
But can anything really be done in practice? Well the parliamentary group on dementia heard evidence from one care home manager who insists that yes it can. Emma Bryer, runs a home for people with dementia at Epping in Essex. Ashlar House is part of Barchester Healthcare. Through better staff training it's reduced the number of residents on anti-psychotics from 8 out of 10 to fewer than 2 out of 10. Emma Bryer told Carolyn Atkinson about one of the home's newest residents - Fred Hartgrove - who is 84 and has Alzheimer's. Until recently he'd been cared for by his wife, Mary, but his condition deteriorated rapidly when he was admitted to hospital and given anti-psychotic drugs there.

BRYER
His supposed behaviour was causing disturbance on the ward. I mean he's a dementia client and he was just wanting to walk around and fiddle about and do things. But the drug of choice was an anti-psychotic. His behaviour worsened but he medication was increased. And by the time I went to see him he couldn't walk, he couldn't talk, he couldn't feed himself, the family were very distressed and I worked with the doctors there and said look I'm quite happy to accept him but I want this medication reduced. And it was. And the gentleman is here and he wanders around and he does his thing and his wife comes in to see him and they have a lovely time and he recognises his wife and he sits and eats his dinner and we have no problems.

ACTUALITY
Do you know where Mary and Fred are? Next door, okay. Alright Josie. Hello Doris.

Come and give me a big hug. Now there you are. Are you happy here?

Yes.

Yes? Oh good. ... talk to me darling.

Eh?

Not eh, you don't say eh, you say pardon. Are you going to sit up and talk to me?

MARY
Emma came in and my god it was life saving as far as I was concerned. She felt like I did, he was drugged up to the eyeballs. A nightmare, a complete nightmare. They took away all his dignity, everything. They were increasing the drug to keep him quiet because he was - he's never ever been a violent man but I could see aggression in him. Now he'd no aggression and I think I've known him since '47, I've known him a long time, and to see him getting angry I couldn't believe it. Without a doubt it was the drugs they were giving him to keep him quiet.

ATKINSON
And when he was in hospital he'd got to the stage where he wasn't able to feed himself or talk to you or recognise you?

MARY
He was absolutely lost, complete - everything had gone from him. Now to do that in three months - I used to say to the doctors when they came in, what are you doing waiting for me to put him in a box and take him home? That was the stage I was at. I used to get angry, to see him like that and it was drugs that did it, without a doubt. It's a wonder he hasn't asked for his cup of tea.

FRED
I only have it when I'm hungry.

MARY
He's always hungry.

ACTUALITY
This lady's from BBC Radio 4. Yes.

Oh I can count up to four - one, two, three, four.

Did you hear that? And she's come to visit us. Alright? I'll see you in a minute.

All right lovey.

Can I what Doris?

Will you be here tomorrow?

Yes I'll be here tomorrow, I'll be here all day today.

ATKINSON
Jacqueline, you're a care assistant here and you've worked here for quite some time.

JACQUELINE
Six years.

ATKINSON
And you worked here before what we might call the new regime was brought in.

JACQUELINE
It was a lot easier before, it's much, much harder, it's much, much more involved but it's so much more enjoyable.

ATKINSON
How have you been trained to deal with people and carry out all the tasks and the personal care and things like that, that you need to do, but to not get into a situation where there's aggression or behavioural issues?

JACQUELINE
The way we do it is by just constantly talking and talking and talking, explaining everything you do. If you go into somebody and you rip all their clothes off, give them a wash, dress them in what they don't want to particularly wear and shove them out for breakfast they're going to get aggressive. If you talk to them, if you explain everything you're doing, slowly, calmly on the whole it works. You've got to be calm and you've got to be patient and it's a lot, lot better.

BRYER
People can do what they want, when they want. You can't look at everything as a group of people, they are individuals within a setting. We've got tables with sandpaper, you know, and sometimes the gentlemen will just go and rub a table down. Five minutes and he wanders off again. But it's given him a sense of purpose, he's been useful. Trowels, seeds, pots in the garden - accessible - not today we're going to do this.

ATKINSON
And for example you have a woman who used to be a nurse and she was really sort of almost wanting to join in with your nurses, what did you do to sort of engage her and make it safe for everybody?

BRYER
What we have decided to do is she has her own medicine trolley - it's not just empty packets we have in there, we have smarties, we have bandages, we have a first aid box - and she can sit and put everything away or somebody will sit with her and we go through the items, we talk about things and it stimulates her memories of being a nurse.

ACTUALITY
Do you want to come in to the dining room now or do you want to wait? Do you want to wait a little bit before we go in?

How long's a little bit?

Well we've got about another 5, 10 minutes before everybody will be in there, so it's up to you, would you rather ...

MARY
I know he's got Alzheimer's, he's got prostate cancer, he's registered as partially blind, so he's got quite a few problems. But here they've given him back what was taken away. I mean he's got back his dignity, he's got back - some days he knows me and some days he doesn't but however it is after 59 - we've been married 59 years in September and to me to watch what happened to him in the hospital and to watch what they did in here, within a week I could see the difference. They dropped him down off the drugs, they've done wonders with him. He's grabbing my hand. I know it's a - what do we say - we say it's a day by day death - Alzheimer's - but when he's cared for like he's cared for here I think to myself I will see my diamond wedding next year, I will do, I know I will.

ROBINSON
Mary Hartgrove ending that report by Carolyn Atkinson. So could every care home do as well as that? There are 13,000 of them in Britain. Frank Ursell, is from the Registered Nursing Home Association, he represents a thousand nursing homes. Was there anything in today's report that shocked or surprised you?

URSELL
No not really, I mean it's a known fact isn't it. I think the issue that comes out and came out at that last interview there is the value of personal centred care and that's what's not happening enough. The care homes are the place where these people live but it isn't just their responsibility for all that's going wrong or that could go right. What we ought to be part of is a team that's working together, the team including GPs and other experts within the health service. And that's the bit that's missing at the moment, we've had a number of reports of this nature and they've always pointed out what's wrong, we're still waiting for somebody to help us to make it better and make it right.

ROBINSON
Well you say to help you make it better and right, could I put to you the point that I put to Jeremy Wright a few moments ago, if a parliamentary committee can see that this is a grave abuse of human rights why don't the care staff seem to see that or do you think they do and they feel there's nothing they can do about it?

URSELL
Well they do see that and they do see that it's something that should happen but again, at the end of the day, the prescribing's done by GPs...

ROBINSON
Well it is but usually at the request of the staff, as I'm sure you know.

URSELL
Not necessarily so but what I'm really saying is that the GP is a hard pressed person, he's got a job to do, and it's all too easy at times for everybody's solution is a drug. I'm more concerned about the fact that what we're looking for, what we should be looking for is more of the person centred care that we saw in that clip and in particular what we should be looking for is a greater use of staff and a greater availability of staff. And staff which are properly trained, is what I must say, but a greater use of staff and in order that we've got more numbers to actually do all the things that we heard in that home there.

ROBINSON
Jeremy Wright, briefly if you would, what a lot of care home owners have said to me is that it's okay to keep on calling for better training but someone has to pay for it and we're in an atmosphere now where prices per patient in a care home are constantly being pushed down by local health authorities.

WRIGHT
Well two things I'd say. The first is that one of the purposes of producing our report was to inform the government's dementia strategy which we expect in the autumn and I hope very much the government will take up precisely this point. The second thing to say is that you shouldn't regard the cost of extra training as being a cost in and of itself, it has to be offset against the reduction in the cost of drugs if you can reduce the number of prescriptions, so it isn't a zero sum game in that sense.

ROBINSON
We must leave it there. Jeremy Wright, MP; Frank Ursell from the Registered Nursing Home Association, thank you both.

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