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	TX: 18.11.05 - Dementia: John Killick PRESENTER: JOHN WAITE
	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. WAITE Now this month, as you know, we've been running a series of features looking at well pretty well all aspects of dementia. READING Dementia is degenerative, although the speed of decline varies. 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. They may also exhibit challenging or unusual behaviour such as verbal or physical aggression, agitation, making repetitive movements and hallucinations. WAITE Well that loss of language can of course lead to huge frustration when patients fail to recall names, mix up their words or muddle their facts. But John Killick, a writer and researcher in the field of dementia, has spent the last 10 years talking and more importantly listening to people with the condition and writing poetry and prose based on those conversations. It all started after John retired as a teacher and took up a writer's residency with a healthcare company working in nursing homes. KILLICK First of all I was writing the life histories of older people who didn't have dementia. Then one day somebody said to me: "I wonder if you can do that with people who have dementia." Now I was almost entirely ignorant of the subject and like a fool I said: "Yes of course I can, I'll have a go." So they sent me to this nursing home with 70 people with dementia and the manager said: "It's a great mistake sending you here." And he opened a door and he said: "There's 30 people with dementia in that room..." and he said: "... you'll get nothing out of any of them." And he pushed me in and locked the door behind me. WAITE And what was it like - those first few days - did it seem as if he was right? KILLICK It seemed as if he was right, it was terrifying. I thought I can't understand what these people are doing, I can't understand what they're saying, how can I write any of this down, I'm a writer how can I function? And I was scared too. I mean I'd never met dementia before in any form and suddenly here were all these people with different symptoms, going in different ways, saying different things, I was totally confused myself. And I'd been there a few days when suddenly something clicked and that was that instead of all these symptoms that were parading in front of me these were all people and they were all individuals, still individuals and the word dementia disappeared for me - it was Frank, it was Betty. And I was being confided in, I was being taken down the corridor and showed things. I was in relationship with virtually everybody in the unit. And later on I came to read the writings of Tom Kitwood, a psychologist from Bradford, who said that the very important thing about dementia was that it wasn't all medical, a lot of it was psychosocial. That is the way we treat people with dementia, the way we look at them is part of the condition and if we treat them badly, in the sense of ignoring them or putting them down, then the symptoms will grow worse. And I realised that I had a lot to communicate here through my experience as a writer, I could write down what they said and what they were saying was extraordinarily interesting. And some of it was highly poetic. And I suddenly realised I was on to something rather special. WAITE But you see when we think of poetry, the art form of poetry, most people imagine it requires a strong grasp of language, a wide vocabulary, the ability to be very precise about the images you use. How do you go about making poems with people with dementia who perhaps won't have that ability? KILLICK Well some still do have quite a strong language ability. What I think happens in dementia is that the way people use language changes. Now in our society we value the intellectual above all things and we use language a great deal for thoughts and arguments and rational things. Now people with dementia have difficulty with that and they also have difficulty with memory. So what seems to happen to language, and it seems to be an unconscious process, they don't do it - they don't learn it, it just happens, is that they gravitate towards the more emotional kind of language, the more sensual kind of language, which probably was there in their childhood but our educational system you know knocks it out of them to some extent. WAITE So what sort of things do they say John? KILLICK They say the most amazing things. For example, there was a lady talking about dementia and she made a gesture with her thumb and forefinger to demonstrate a circle shape and she said: "This is your forehead ..." indicating the top part, "... and it's like something hits it, smashes into it really hard, like a collision of planets and the hole goes into pieces, you lose a piece of the hole or you become many separate parts of the hole but not one planet, not one hole anymore." WAITE Well there's poetic metaphor if I've ever heard it. KILLICK Absolutely. So there's an example. Now people were saying things like that to me and I was either writing them down or taping them, bringing them back to them, showing them the poem I'd made or if it wasn't a poem it was a piece of prose, getting their agreement that they'd said it - that wasn't always easy because people couldn't remember. But many people thought what I'd brought back to them was wonderful. And to have their name attached to it was amazing. And I would show it to relatives and I would show it to staff and in most cases where it was something really special I would get permission to publish it. And it's always been the words of the person with dementia, it's never been my words. One lady with dementia, I'd said to her one day and we'd made a poem together, and I said: "Do you know I'm a poet too." And she said: "No you're not, you're my editor." And I'm the editor of this material. It's a very great responsibility. WAITE How able are the people you've met to give you insight into what they themselves are experiencing, I mean what sort of themes emerge? KILLICK All sorts of themes, themes of unhappiness, themes of discomfort, themes of creativity and pleasure - the whole gamut of emotions really. WAITE And have you got an example there? KILLICK Well I could give an example of a poem where a man expresses I think his appreciation of the past and also what he has to cope with in the present. "Sometimes you can see where the smoke blows right across from the factories. Beautiful trees, apple blossom. It's a favourite place of mine, wouldn't it be of yours? Well I'll have to be off now, temporary circumstances. When it's stormy there we used to nip over, all the apples got blown off, that's where most of them lie - over the terrace and over the garden. Well I'll be on my road, or they'll be getting the guns out. Sometimes I think about running away, right up through the meadow to the cliff, it's reasonably steep, always keep myself trim. There's no change in this place. Well I'm still on a tether so I'll have to be getting back." And there you've got a perfectly constructed poem in the way he spoke to me. WAITE And how much editing did you do on that, I'm intrigued to know, I mean I could almost hear him saying that as you read it, did you trim it out, make it make the beat, make the stanza? KILLICK In that particular case it was just a matter of arranging the lines on the page. There was nothing else that he said in between those things, they came out just like that. And he was standing in a room with me and we were alone and he was looking out the window, he wasn't describing what he saw out of the window, he was describing what was in his imagination ... WAITE A window long ago. KILLICK That's right. And then the little bits in the middle - well I'll have to be off now - were him reminding himself that alas he wasn't in that past, he was in the present where there were demands being made upon him. WAITE Now you also say John that people with dementia seem to enjoy particularly verbal humour, I mean in what way, how does this come out in their work, it doesn't sound as though there's much to laugh about in their position? KILLICK There's an extraordinary amount. One man said to me: "We're still looking for the wonderful piece of medication that will do the job. But in the meantime we need to learn some new songs and some new jokes." And here are some of the things people sort of said to me. I've got a real anthology of little snippets. This is a lady talking about the care staff. "What good pastures there must be here, we are full of fat nurses." "Spending my time - I never earn any." "Is it one o'clock yet. That's shock horror and murder time, I mean the news." And here's a man who was a lorry driver: "Up to three tons my licence. And now I can't even ride a bicycle." WAITE It's marvellous isn't it. KILLICK It's marvellous stuff. WAITE And you've written too, haven't you, on their behalf whole poems of this sort of verbal humour, give us an example. KILLICK Absolutely. Right well this is some of the snippets from a lady called Maisy. I called the poem 13 Snapshots, so you're just going to get a sample. "Hello, you're more welcome than the Duke of Edinburgh. My mother likes you, she says you're alright, so that's something. Have you a cigarette to dry up this hay fever? Ten or five will do. Am I married? No, I was waiting for you. I'd love to do the tango but you might break in two. Oh this damned hay fever, if you haven't a cigarette to dry it up it don't 'arf give you some stick. Any time you want to ride on a horse my son's got two. And if you ever want some clean notes in your hand he works in a bank. Have you got a car here? Then you can take me home with you. What will your wife say? Oh she'll say oh I see you're a bigamist. WAITE And what effect does this have on the people with whom you've worked? KILLICK Ah, sometimes it is tremendously confirming of their sense of identity because often people get neglected, people don't talk to them because they find what they say strange and what they do strange. I'm not put off by this at all, I'm so used to it now and I'll accept anything really. So I don't go there with any idea of what should come out from people, I just wait for something to happen. And people say all sorts of things to me about it. One lady said: "Anything you can tell people about how things are for me is important." She wanted these poems to be shared with other people. So I think that people with dementia can often find a real solace and satisfaction and a creativity in speaking in this way and having it recognised as being of value because they're so used to being put down. WAITE Now many people may be listening to this John thinking well this all sounds very well but I'd like to see John getting any poetry or any inspiration out of the person I'm looking after 24 hours a day, I'm caring for. Is there any advice you could offer them? KILLICK Yes because actually I've had a number of carers whom I've given talks and they've come up to me and said oh I wished I'd listened to my mother or father or husband or wife more carefully because they were saying interesting things too. And it's this - you see the medical view of dementia is that it's all downhill and very negative but I'm one of the psychosocial brigade who feel that there's more to it than that and that in fact all is by no means lost and there are many positive things - there's a creativity there in language and in other ways which maybe wasn't there before. There's a disinhibition, so that people often are prepared to try things in the moment that they wouldn't have tried if they'd been given time to think about it beforehand, they're prepared to give it a go. And so as far as language goes I would say to people value what the person you love is saying, write it down, tape record it, affirm them when they say interesting or beautiful things because that's still their personality showing through in a new way. WAITE And finally, I mean you have spent more hours in social conversation with people with dementia than probably anyone else in the country, what - finally John - what have you learnt from them? KILLICK I've learnt a tremendous amount. I've learnt actually that we value intellectual capacity too much in this country and in this culture. And I think that underneath that there is an essential humanity which we need to value more and I have learnt to value it and I believe that in a curious way - I'm not saying everybody should get dementia, good god no, I'm saying dementia is here, we cannot at the moment cure it, we have to live with it, it actually can teach us things, the person with dementia can teach you a very basic humanity and a very basic warmth, humour, that maybe we don't value enough. One lady with dementia came up to me one day and she said: "I bet you've never been so near nature before." And I thought yes that sums it up - I'm nearer the natural person than one normally gets. WAITE John Killick, a remarkable man. And details of John Killick's writings are on our website or you can find out about them by ringing 0800 044 044. Back to the Transcripts homepage Back to the You and Yours homepage The BBC is not responsible for external websites

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