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| TX: 28.11.05 - Dementia: Palliative Care PRESENTER: WINIFRED ROBINSON |
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| THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT. BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE BBC CANNOT VOUCH FOR ITS COMPLETE ACCURACY. ROBINSON How best to care for someone with dementia has been the big worry for many of you who've contacted us in response to our series. READING Dementia is a terminal illness, although in most cases it is not the direct cause of death. Rather the progress of the dementia impairs the persons ability to cope with infections and other physical problems that can shorten life. In the later stages memory loss is likely to be severe. A person may cease to recognise family and friends or even their own reflection. They may gradually lose their speech and their ability to perform everyday tasks unaided. ROBINSON Many carers wrote to say how difficult it can be to make the end stage of life as good as it could be when the person with dementia seems to have lost awareness of their surroundings and asks for little or nothing. You may remember the writer John Killick in an earlier interview describing how he has found poetry in the words of people with dementia. Well he's just come back from a trip to Australia, funded by the Hammond Care Group. He went with a clinical psychologist, Kate Alan, to test a technique for communicating with people in the final stages of life. John Killick was trialling this technique on people with dementia. I asked him how these people seemed to him at first. KILLICK They seemed very, very remote, remote from me, remote from others and physically not enabled at all, they were either in bed or in a wheelchair, they were on their own, they were not interacting with anybody else. I had a technique I was going to use which I'd learnt from America called Coma Work. And of course people with dementia are not in a coma but there are certain similarities as well as differences. And the approach really involves trying to pay close attention to the person's style of breathing and attempting to match it to your own. Using touch, that's hand to hand or hand to wrist contact and pressure in time with the breathing. Close observation of the person's actions and sounds and a mirroring of them or commenting upon them to demonstrate that you're there alongside them. And I also used music. ROBINSON Why did you think it was still important to try to reach people, even at this late stage in their lives? KILLICK I think it's absolutely crucial. We cannot ignore any human beings, we cannot say - Oh well, these are old people and they have a disability we'll just put them on the scrap heap. That is inhuman. And we must dedicate some of our resources and some of our time to looking at people in the late stages and helping to make their sunset better. ROBINSON Well let's hear an extract of you communicating with someone who has advanced dementia. ACTUALITY ROBINSON Well the woman is making an attempt to talk to you there. How long did it take you to reach that level of communication with her? KILLICK On that particular occasion Winifred about 15 minutes. She was turned away from me, I was trying the Coma Work techniques and I couldn't get eye contact with this lady. And then after 15 minutes she turned towards me, her body language changed and she got eye contact, she smiled and she began to make sounds and also the pressure on my hand increased. ROBINSON Kate Alan, as I said, you are a psychologist and you were observing all this and trying to analyse how the different people responded to being communicated with in this way, what did you find? ALAN I observed that clearly communication was happening and that there was a person there who was trying to make contact in various ways, who was expressing feelings, sometimes not always positive, sometimes the message was not today, I'm not feeling like having a conversation, at other times it was more ambiguous, at other times there was a clear positive response in terms of non-verbal communication like smiling, eye contact, verbalisation, other kinds of vocalisation. ROBINSON Well they're very fine judgements aren't they to make and surely they must be really subjective judgements rather than scientific measurements. ALAN Well it's still an open question. What we did in Australia was a very small scale trialling of this approach. What we have started here is something which has convinced us that there are things here that are very important to explore. The next stage would be to set up the opportunity to measure, to record responses in a more controlled and more scientific way and more of that kind of work will give us clues as to what's going on and to what extent we can use such a method to improve people's quality of life. ROBINSON John Killick, many people who visit people in hospital or have them at home at the very end of their lives would love to be able to communicate and try to communicate but often find that they sit there saying nothing or that they leave quickly because they don't really know what to do. Do you think that you could help people to communicate at this very end stage as you say? KILLICK I do believe one can and I do believe that this method suitably developed and evaluated could be a real way forward for people who, as you say, are in the situation of sitting with their loved one and completely baffled as to how to get through to them. ROBINSON John Killick and Kate Alan. MCLENNON Judging from the letters and e-mails you've sent us that intimate level of care for people with advanced dementia is a very long way off. Many of you have told us of the struggle to get basic pain relief, hydration and physical comfort. Jo Cross questioned whether people with dementia are being actively denied good palliative care. Another listener told us about what happened to her mother. She wrote: "After she became mute and very frail and so a compliant patient we had to make a lot of fuss for her to be seen by a dentist and our pleas for pain relief for her arthritis or treatment for extreme constipation were rejected. A low dose of morphine was prescribed in case of need for her last days but nurses would not have used them at all had I not pleaded. As it was it was too late to establish decent absorption and my mother died in great distress." ROBINSON Well I'm joined now by Ilora Finlay, she's professor of palliative medicine at Cardiff University. Professor Finlay, one of the guiding principles in developing palliative care is that there can be quality of life right to the end of life, do you think there's a reluctance among some professionals to accept that if the person has dementia rather than another incurable illness? FINLAY One of the difficulties with dementia, of course, is that patients are, as we've heard, unable to communicate or so it seems. But in fact, as your previous piece showed, touch is incredibly important, very calm touch, gentle noises, gently talking to somebody, can often get through to them. One of the other things is of course people with dementia may be agitated just because they're uncomfortable and if they are more comfortable then they're more settled and also they're freed up to be able to communicate once their discomfort's dealt with. ROBINSON Do you think though that they are treated differently by professionals than perhaps people in the final stages of other illnesses? FINLAY I think it's a sad reflection on our society that somehow we view dementia as shameful, as something to be looked down on. And so sadly I think it's inevitable that there are times when these patients won't get the care that they deserve, they really deserve to be cared for properly. ROBINSON What simple things would make the end of a person's life who has dementia more comfortable? FINLAY Well I think it's worth trying to divide it into the professional bits and the bits for the family and the relatives. Professionally certainly pain relief has to be high up on the list. And actually because these patients have difficulty communicating it may sometimes be worth giving them a trial of pain relief so that you - for instance there's a patch that you can stick on the skin, low dose, they absorb ... ROBINSON Of morphine? FINLAY It's like morphine and it's called Fentanyl and they absorb it through the skin, so you're not worried about trying to get them to swallow something. And if they're more comfortable you'll see it within 24 hours and they'll be more settled. And you can almost give that a go. In terms of constipation that has to be dealt with - they need laxatives. But the other thing is constipation is often because people are a bit dry, they need more fluids and that's where staff and visitors and relatives come in because they need to be encouraged to drink, they often don't have as much of a sensation of thirst as they ought and also they have difficulty in drinking for themselves. So therefore lots and lots of small sips of fluid, encouragement to drink, and sometimes when patients are dry they warrant having some fluids run in subcutaneously under the skin. It's very, very simple - we put a small needle under the skin of the abdominal wall, you can run in a litre quite safely and they will absorb that and be rehydrated with it. And then there are things for the family to do. Mouth care is really important - just an ordinary child's toothbrush, which is a bit softer, and toothpaste, run around the teeth will get a lot of the sort of gubbins off the teeth. And if the person chews on the toothbrush well fine, so be it, they're not going to come to any harm by chewing on a toothbrush and they'll swill the toothpaste around their mouths. The other thing is keeping their mouth moist, if you take an ice cube and smash it up you'll get little splinters of ice, little pieces - thin pieces of ice and just slipping that into somebody's mouth can be very, very soothing and cooling. Obviously a whole ice cube is something that they'll kind of gag on and choke on. But these little slithers of ice just dissolve and they'll swallow the little bits of water down. And it also is important for the family because they feel that they can do something positive and at the same time sit and hold their hand, stroke their hand gently, talk to them, simply and calming explain they're going to give them a little bit of ice for their mouth or a few drops of cold water in their mouth from a dropper to swill round and keep it moist. And that will help keep somebody comfortable. And then of course there's turning as well. And turning somebody you can just roll them gently and put a pillow behind them and then roll them a little bit more, you don't have to lift them up and turn them right over to change their position a bit. And again changing position helps people be more comfortable. ROBINSON Professor Ilora Finlay thank you very much. MCLENNON Tomorrow dementia is going to be the subject of Call You and Yours. If you have anything you'd like to add on the care of people with dementia or any of the other topics we've covered during the past month on this illness, such as access to drugs, well tomorrow will be your chance to get them on air. You can call us now with your views by telephoning 0800 044 044, you can e-mail us via the website bbc.co.uk/radio4/youandyours. And in both cases please don't forget to leave a contact number so we can call you back. Back to the You and Yours homepage The BBC is not responsible for external websites |
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