| | |
| | |
 | You and Yours - Transcript BBC Radio 4 |
| |
| Print This Page |
| |
| |
| TX: 09.11.05 - Dementia: Diagnosis Dilemma 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 yesterday on our ongoing strand of features about dementia we heard about the classic symptoms of the condition that can help a doctor to make a diagnosis for his patient. But many of you have e-mailed to say that with dementia being a progressively debilitating condition and one which has no cure of course it's extremely difficult to know whether to pass on that diagnosis, to actually tell a loved one that they have it. Many relations believe such a bleak prospect would be far too upsetting. Others, on the other hand, say that only by knowing their diagnosis can someone make plans for the future, they also think it's important to tell other members of the family and the wider community. Alice Phillips has been caring for her 62-year-old husband Arte for a number of years and she's never felt it was right to tell him he had dementia. But David Whitcombe, married to Sue, father of Jo and grandfather to Ellie, was informed straightaway, his wife Sue says, when he was diagnosed three years ago. SUE WHITCOMBE I went in and the consultant said to me that it was Alzheimer's and some damage to the right frontal lobe and he said I'll call your husband in and talk to him and he said I will give him the choice of whether he wants to be told what the illness is. And I thought well it was what we'd expected, so I went out. They then took David in, talked to him and then called me back in and said today they would talk to your wife and to yourself, do you want to know what is wrong with you. And David, as he is, just said yes. ALICE PHILLIPS He knew that he wasn't feeling the way he should. But we never discussed it, we never discussed Alzheimer's not once. SUE WHITCOMBE It didn't seem to register with him even then, I thought he would have been a lot worse than with his reaction but his typical reaction was well I'll call myself David Witless, you know made a joke of it, so obviously the actual in depth understanding had already gone. ALICE PHILLIPS I had a lot of disagreements with a lot of the doctors about whether he was told or not and they all thought I should tell him. And I didn't agree. I said I won't be able to bring him if you're going to tell him that he has it. JO CUNNINGHAM Once he was diagnosed and we'd all got used to the idea and obviously you tell close family and whatever, there was the case of well who else should be told. Mum and Dad live in a small community, so obviously neighbours needed to know if anything. Dad will admit himself he sometimes says the wrong thing at the wrong time to the wrong person. Then obviously you know he comes to our house a lot and sees the children and there's a lot of children in the street and I felt it was only right that I told the parents of the children in the street in case he did approach them and say anything wrong. ALICE PHILLIPS My two daughters, one was expecting her first baby and my other daughter had just started university. And I couldn't tell them either because I thought what's the point of them worrying and waiting for something to happen the way I am when we know we can't do anything to help him. JO CUNNINGHAM As Ellie's grown up she's realised herself that granddad's not right and we often spoke about it. We didn't want to talk about in terms of you know a disease and Alzheimer's because that suddenly makes it seem very frightening to a small child. ELLIE We know how to act towards him when he does different things and he used to. We imagined him as like a bit younger, so he could understand us, so we say things like that we say to people our age so that he understands. SUE WHITCOMBE The neighbours have been superb, they'll say we were a bit worried about David, he doesn't seem himself, he said this to me the other day, just thought I'd better let you know. And they say you're not upset and I say well no, I'd rather know and be able to sort of think well how can we get round that problem. We found it easiest to tell as many people as possible and to be honest David always says hello, I'm David Whitcombe, I've got Alzheimer's. So straightaway he pre-empts any problems. ALICE PHILLIPS If I said to him you've got Alzheimer's he would have probably said what's that and I would have told him and he would have been upset. Then 10 minutes later he would have said what's wrong with me and I would say you've got Alzheimer's, what's that, and we would repeat that every 10 minutes of every day and every 10 minutes of every day we would both have our hearts broken. So what was the point? WAITE Alice Phillips and the Whitcombe family. Well Dr Julian Hughes is a consultant in old-age psychiatry at North Tyneside General Hospital. Two very different stories there Dr Hughes, is there a general guidance within the medical profession about what doctors should do - tell or not tell their patients? HUGHES My feeling is that they are better off knowing and it usually seems to be the case that when you tell somebody that they've got dementia they're able to handle it reasonably well. WAITE But you have sympathy with relatives perhaps like Alice who just fear it'll be too upsetting for their loved one? HUGHES Yes I think we've got complete sympathy with that view because in fact it's also very difficult for doctors to tell people any bad news and particularly this sort of bad news. The figures that are usually given are sort of 70-80% of people when they're asked would you want your relative to be told the diagnosis they say no. But having said that when they're then asked a different question, which is if you have dementia would you want to know, then the same proportion 70 or 80% say yes of course we'd want to know if there was something wrong with us. WAITE And is there general guidance within the medical profession about what doctors should do? HUGHES The general guidance from the General Medical Council is that people should be given information that they require in a way that they're able to understand. The way it works best for me is if when I've gone to see them for the initial assessment I ask them what they would like to know once we've done all of our tests, if we're able to tell them more information, what exactly they would - how much they would like to know about that. And that seems to be better than trying to thrust a diagnosis upon them when you're not even sure whether they want to know that or not. WAITE And Alice was saying how almost her world shut down, she didn't tell her daughters, shied away from her friends, whereas of course the Whitcombes told the world and his wife and it seemed to work very well for them when they did, they got a lot of support. HUGHES Yes and that's certainly a story that I've heard before, I know that I've seen a patient this week who I've been seeing for about three or four years and he's always been extremely open about his diagnosis and in fact he has a little card that the Alzheimer's Society gave him which he can just show people which explains what the problem is. WAITE So it's obviously up to everyone to decide in their individual case but you would urge them to think of perhaps broadening the news and the information rather than keeping it to themselves? HUGHES I think so and this is partly because if we can't even talk about this disease, if it has so much stigma attached to it it's just going to, as it were, add to the burden of having the underlying disease, so you don't just have the underlying disease you also have all these sort of terribly negative attitudes from everybody you come across, just being humanly truthful helps. WAITE Dr Julian Hughes, thank you very much indeed. Back to the You and Yours homepage The BBC is not responsible for external websites |
| About the BBC | Help | Terms of Use | Privacy & Cookies Policy |
