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You and Yours - Transcript Βι¶ΉΤΌΕΔ Radio 4 |
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TX: 07.08.08 - Dementia PRESENTER: CAROLYN ATKINSON |
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Downloaded from www.bbc.co.uk/radio4 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 Βι¶ΉΤΌΕΔ CANNOT VOUCH FOR ITS COMPLETE ACCURACY. ATKINSON Now they call it the long goodbye, dementia is routinely called hellish and horrendous as people experience a slow demise and their carers stand by and watch. But can dementia be any different? The clinical child psychologist Oliver James, perhaps best known for his critique of modern society in the book Afluenza, has written a new book called Contented Dementia in which he outlines what he calls a groundbreaking new method of caring for people with dementia. He claims it gives them a long term sense of well being. The method is called SPECAL, which stands for specialised early care for Alzheimer's and it was devised by his mother-in-law Penny Garner. Well Oliver James and Penny Garner are both with me now. Oliver, first of all, what do you mean by what sounds like a contradiction in terms "contented dementia"? JAMES It sounds extremely implausible I know but Penny's great discovery really is - and it has been - is that long term memory is still there in people with dementia. She says that the main disability that somebody with dementia has is that they're not storing new information and the extraordinary thing that happens, if you follow her method, is that you begin to see that if you plug into the long term memory they are constantly - people with dementia - constantly trying to make sense of the present situation which if I was in this situation - I had dementia - I wouldn't know who you were, I wouldn't know who the people around me were, I wouldn't know where I was quite probably and I would therefore go back to the old memories and try and make sense of that situation out of the old memories. And this is why, so often, people with dementia are thought to have delusions - they're given anti-psychotic medication, half the people in care homes with Alzheimer's are given anti-psychotic medication which is an absolutely outrage and which the Department of Health and the Alzheimer's Society agrees is an outrage. In fact they should be using Penny's method which makes complete sense of this situation. If you just go along with what the person - the sense they're making of it and take the lead from them. ATKINSON Penny, this all came about because you cared for your mother who had dementia and you use the analogy of a photo album, can you explain in simple terms how you think the brain is like a photo album? GARNER I think the memory is like a photo album and I think we lay down our recollection of everything that's happened automatically. Each event goes into the photograph album, if you like, as a photograph and in the centre of it there are facts and around each photograph are the feelings associated with the facts of what has just happened. And that record builds up over our life and we carry it around - that album - wherever we are and we use it all the time but we're constantly consulting today's page - what has just happened in order to understand what is happening now. What happens, as I understand it, in dementia is that randomly and intermittently and increasingly frequently new photographs entering that album are devoid of facts but have the associated feelings, so feelings continue to store but they have not got the facts related to them. ATKINSON And from your observations with your mother and the way your father dealt with your mother what did that lead you to believe that in fact what he was doing was sort of wrong and it wasn't working? GARNER Well I think it wasn't so much wrong, it was commonsense ... ATKINSON Well it wasn't working. GARNER It certainly wasn't working, no, she was like two different people. If commonsense - what I've come to call now - commonsense was applied, which is assuming that she'd got a full deck of cards or a full set of photographs and so he was drawing on what had just happened to explain what was happening now she was utterly, utterly lost. On the other hand if we drew on events from long ago that made the best match possible those were the photographs she was seeking out anyway. And so we merely didn't interrupt the sense she was making of her own surroundings. ATKINSON So Oliver there seem to be three parts to this whole idea - three commandments as you call them - what are they? JAMES Well these are very practical things. The three commandments are: Don't ask questions; Never contradict the person with dementia and Learn from the expert - learn to love repetition. And, for example, listeners now can test this out for themselves if they're a carer to someone with dementia. Just try for 10 minutes not asking any questions at all and instead try playing verbal ping pong with them, that is try and work out some topics that you think are favourite topics - often from very far ago in their long term memory - and just try batting back and forth topics that they're going to be familiar with, which they're very happy being in that narrative. That's the point that's Penny's making in the end, is that so long as they're in a narrative that makes sense of their immediate surroundings in the absence of new information they will have well being. And of course it's enormously practical, you can then convert that into helping them to eat, to sleep, to do all the practical things that have to happen in the present today which many carers are obviously enormously exercised about, amazingly this technique enables you to do that, enables - it's not just about getting them to live in la la land in the past, it's about using their past memories to help them to live in the present. ATKINSON In the book one of the examples you give is somebody who's in a care situation, a care home I think, and they go to the kitchen, they get the knife out and everybody thinks oh my god I'm going to be stabbed. Actually he used to work in a kitchen, he was a cook, a baker... GARNER He was a master baker. ATKINSON Exactly, so getting a knife out in a kitchen was routinely normal. And if anyone had understood and taken the time to realise that that was his previous life then it would have all been very explained. GARNER Absolutely and as long as it was there wasn't a problem but when he moved into another environment where that understanding wasn't there then very understandably the whole thing went absolutely wrong. ATKINSON But this thing about not asking questions, I mean the whole concept people believe in person centred care is to give people the choice and control over their lives as much as possible, if you start taking out the right to ask a question, if you like, then surely you're taking away control, you're taking away choice - you're deciding what they're going to do. GARNER I think that's the commonsense view, which is absolutely fine if you apply it to any condition other than dementia, but it - commonsense is completely useless when it comes to dementia because they haven't actually got the information you're expecting them to have. They haven't lost the ability to reason, I was very, very clear about that way at the beginning with my mother, in conversations with her when I was trying to - as I often did - ask for her advice over something which I was teasing out to myself. I began to see that she could only actually offer me advice based on what I had immediately said the few seconds before but couldn't carry over because that wasn't entering storage. ATKINSON I mean you give the example of the airport lounge. She used to do a lot of travelling and she liked travelling, so every time she was in a scenario that she didn't understand, perhaps a doctor's surgery, you would say you're in an airport lounge, the flight's a bit delayed ... JAMES But Penny didn't impose that on her of course. GARNER It wasn't at all like that actually. What happened was if she was happy sitting where she was I was quite happy to go along without discussing where we were but if she needed information at any time or if she suddenly - I mean the dramatic bit that Oliver has written in the book, because it was an epiphany moment for me sitting in a waiting room, it was in a doctor's surgery, and we were chatting away quite normally and she suddenly just looked up and said: Has our flight been called yet? And suddenly I had a new pair of glasses on my nose, I was looking at that room through her eyes. She had no recollection, if you like, she had no photograph in her album of what had happened immediately before - of the conversations on the way there and so on and therefore she was doing her best match and it was a highly intelligent, sensible, reasoned idea that she was somewhere familiar waiting for something to happen with other people. ATKINSON But when you take that further, that argument, you do get into the uncomfortable area of ethics about this - you are lying, you're deceiving people, you're going along with an untruth. JAMES Well what you're doing is actually supporting the reality of the person with dementia and there is nothing unethical about that. I can't think of anything more unethical actually than saying to someone things that will deeply, deeply distress them. If you support their reality, all the problems for people with dementia are created totally by the people around them, they will have no problem at all if you allow them to occupy the existential space in which they're living. ATKINSON We're going to come back to you later in the programme but just give us a sense that in your view this method can make dementia much more bearable than people think. JAMES I knew nothing about dementia, I'm just - as you said - a child clinical psychologist, until I started going to my mother-in-law's day unit in Burford Hospital in Oxfordshire. If you go there you will see people who've got dementia and had it for years who are absolutely happy as Larry and that's why the book is called Contented Dementia and the sub-title is 24-hour Wraparound Care for Lifelong Well being and it really does supply that. ATKINSON Okay, Oliver James and Penny Garner staying with us and they'll respond to some of your e-mails and your questions and your comments later in the programme. Earlier in the programme we heard from the clinical child psychologist Oliver James and his mother-in-law Penny Garner about a method they're advocating for caring for people with dementia. Now they're still with us and they're going to respond to some of the e-mails that you've been sending in in your droves, I have to say. Many are very supportive of what has been said. Some people are saying they're doing it already, they just don't have a title for it, other people are saying they're doing similar things but they're not getting the recognition. And many are asking practical questions. So Susan Pageum has e-mailed, she's saying: How do you deal with a person with dementia living in a nursing home who constantly asks to go home and becomes very distressed when you say they can't? Penny what would you do in that situation? GARNER I think first of all I would realise that if you take the photograph album idea of dementia on board you can see that you only need to negotiate on a 24 hour basis. You only need to say to somebody something that is acceptable to them to stay overnight and you could negotiate again the next morning. We had fascinating experiences at Burford over the 10 years that we worked with the hospital and we discovered that if somebody was in for a fortnight on respite the very best evening they ever had was when the answer to the question - When am I going home? - was tomorrow. And it took a long time before we got through the ethical hoops of being allowed to always use can we discuss - is it alright overnight and can we go home tomorrow type of thing, can we discuss it in the morning. And that way dementia actually works for you because there's lack of storage of facts but the feeling store - so the feeling is I'm fine, the following morning that person doesn't ask again until they feel anxious which probably will be the following evening. ATKINSON Rachel Barnes has e-mailed: My mother - she says - has a form of dementia which prevents her from talking much at all, she's forgotten words, it makes it extremely difficult for her to communicate. I mean a lot of what you're saying assumes that people are still very articulate, what if things have moved on? GARNER Well some of the greatest bits of learning work that I did was with the Oxfordshire Learning Disabilities Trust, as it was then called, where you'd got a client group who were - had not communicated in that way for a very long time, in the way that we would expect people to be communicating. And although everyone was very sceptical to start with we had the most resounding results. And one of the reasons is that we aim, in SPECAL, which is a comprehensive programme that once it's set up you can simplify it over time to keep up with the pace of the disease, and one of the elements that we build in is gesture, so accompanying words from a very early stage are gestures and those gestures come to speak absolutely masses of information to somebody in a very, very economic way. ATKINSON How long would it take someone to engage and use these methods because from a carer's point of view they're run of their feet, they're probably extremely stressed with the day-to-day, the practicalities of actually caring and to sit down and think right I've got to do this and it's rather like an exam and I don't know any of the answers and I've got to work it all out, it's something that they're going to fall at the first hurdle with isn't it? GARNER I entirely agree that a main carer has got their work absolutely cut out just with getting through the day and attending to everything that needs to be done anyway. Until the book came out it was very, very long for somebody to have to get their head round in conjunction with us and we could only work with people who could get into us and so on. Now with the book out it's absolutely a marvellous prospect that somebody can have the book, you'll see that there's a chapter in the book which talks about your team - no one person can do this on their own. But the important thing to say to main carers is you are gathering up an absolute goldmine of information every day if you observe and record a little bit about what you see happening and the behaviour and the responses. ATKINSON Oliver, if this method is as effective as you are claiming and Penny is claiming why is it not being done across the whole of the country, I mean there must be something either - it's incredibly obvious and everyone's doing it anyway and you've just written a book about it or it doesn't work? JAMES Well I think it's staggering that Penny's managed to achieve it because she's been at it for 18 years, she didn't go to university, she has no medical training whatever and she managed to develop this method on her own and that's what she's been doing for the last 18 years and making it work and it's only now that I'm actually - I've got involved and I'm trying to give it wider publicity. ATKINSON I mean Rosie Radcliffe has e-mailed to say: Your programme describes a method - she says she's doing it instinctively when she cared for her grandmother, when she asked when is Hughie coming home - that was the husband who had died - she says oh he'll be home for his dinner shortly - problem solved. I mean people are doing this without the sort of academia around it, if you like. GARNER I couldn't agree more and it's a wonderful climate now because there's a huge amount of tremendous work going on. And I suppose the unique part about the SPECAL is it has taken all these approaches and things that work, if you like, and we've come up with an entire comprehensive system. And the outcome of doing the work to develop a SPECAL profile is you end up with something called a SPECAL passport which ensures that that person will be safe, whoever they're with, whatever they're doing, for the rest of time. ATKINSON Okay. JAMES And in fact there is a website SPECAL - S P E C A L dot co dot uk. ATKINSON Okay we can put that on our website. Okay Oliver James and Penny Garner thank you both very much indeed. Back to the You and Yours homepage The Βι¶ΉΤΌΕΔ is not responsible for external websites |
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