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	TX: 07.11.05 - Dementia Series: Introduction PRESENTERS: JOHN WAITE AND WINIFRED ROBINSON
	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 Hello and welcome. Today we're talking about dementia. The term is used to describe the symptoms that occur when the brain is damaged by diseases and conditions, including Alzheimer's and stroke. Its true impact is often hidden within families, yet it's something that nearly all of us are likely to be affected by in some way at some stage in our lives. WAITE Throughout this month we'll be looking in depth at dementia, we'll be examining the behaviour that often accompanies it, we'll be talking about the drugs and the care that are needed to combat it. But it isn't all doom and gloom. We'll be hearing too some of the stories of hope and even humour from people with the condition and the families who are helping them to cope. ROBINSON But today we start with a programme devoted to looking at what we know about dementia - its history and the impact it has on people's lives. We'll meet a family where the father has been recently diagnosed with the condition. And with us throughout the programme is a panel of experts who'll be sharing their views of living and working with dementia. Among them Barbara Pointon, who's been caring for her husband Malcolm for 14 years. The couple were the subject of a famous and award-winning ITV documentary - Malcolm and Barbara, A Love Story. WAITE So let's start with the voices of some of those we're going to hear from over the month and who have direct experience of condition. MONTAGE What I'm going to do now, I'm going to ask you to remember three objects for me, okay, ready? Apple, table and penny. Table and penny. It's only these last two years that Dorothy can't remember where things are. I think now I've got to be very careful because she puts the cat to bed and me outside. So I get hold of him and I give him a hug and I give him a kiss and I say - it isn't you that's being stupid, it's this Dr Alzheimer - it's his fault. Don't I? And then I say I feel worse than ever now and she hugs me and kisses me. Okay, I'll tell you what my love can you tell me what month it is at the moment? What month is it? January. January, okay. I don't suppose you know what season we're in do you? What season is it? Summer. Okay. She took all the stuff off the bed, she got the bed torn down, the pillow fluffed up, I said - Now what you doing love? She said - I'm getting the bed ready for dad when he comes in. Her father was dead before we got married and we've been married over 54 years. If there was any violence on the television he used to try to hide me. It sounds really so strange but we used to spend a lot of time behind the sofa, quite a few times he locked me in the cupboard under the stairs. He was so desperate to keep me safe. I mean you can laugh about it now but at the time believe me it's heartbreaking. Now I asked you to remember three objects - do you remember? Can you remember what they were? Apple was one. Oh yeah. Can you remember the other two? Was it pear? No. Peach? No. Apple, table. And chair. WAITE Just some of the people we'll be hearing from during the course of this month and of course we want to hear your views and experiences, whether you've just been diagnosed yourself perhaps, are caring for someone with dementia or want us to cover a particular area of this vast subject. Do please drop us an e-mail via the special page on the You and Yours website, call us on 0800 044 044 or write to us at BBC Broadcast House, London W1A 1AA. But first what exactly do we mean by dementia? Here are some of the key facts: READERS Dementia is a term used to describe the symptoms that occur when the brain is affected by 1 of 200 specific diseases, the most common being Alzheimer's. Dementia is not a disease in itself. Most people experience loss of memory, confusion and problems with speech and understanding. But symptoms vary, depending on the type of dementia. Three quarters of a million people have dementia in the UK and the numbers are steadily rising. It mainly affects older people and chances of developing it increase significantly with age. It affects 1 in 5 people over the age of 80; 1 in 20 people over the age of 65 and 1 in a 1,000 between the age of 40 and 65. 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. ROBINSON Some facts about dementia. Well with us throughout today's programme are Dr David Wilkinson, he's a consultant in old age psychiatry at Moorgreen Hospital in Southampton - he joins us from there; Barbara Pointon whose husband Malcolm is in the advanced stages of Alzheimer's - as we said at the start of the programme they featured in a groundbreaking programme by the documentary maker Paul Watson, it was broadcast in 1999 and James McKillop, who has a form of vascular dementia. Dr Wilkinson, what causes dementia? WILKINSON Well Winifred, as you said in your introduction, dementia is just the name we give to the clinical picture we see when the brain is failing and a bit like breathlessness as a symptom of lung failure can be caused by many things, this brain failure can be caused by a number of different conditions and insults to the brain. So the symptoms tend to vary a bit. But the main symptom we associate with dementia, of course, is memory loss. And that characteristically starts with more recent memories, which can mean the person with dementia may think they've got a good memory, because they can clearly remember the first day at school, but of course what happened five minutes ago is a complete mystery. So that is more important to us and that's a real problem. And dementia - sorry. ROBINSON Sorry, carry on. WILKINSON As I say this disturbance of recent memory, I think, is something we need just sort of mention for a minute because it's very different from the forgetfulness that I'm suffering from and maybe you are as we get older, it's more and more difficult to remember someone's name or the name of the film or something you've seen last week. But we know what we've forgotten, we know what we're trying to recall and with a bit of luck and a following wind we will remember it. But someone with dementia may not even have any recollection of going to the cinema, may not even recognise the person in front of them whose name they're trying to remember. So it's very different from the forgetfulness that we often suffer. ROBINSON Well I'm glad you raised that because that's something that our listeners asked us to ask you - the difference between memory loss and forgetfulness, which you've just explained. Most people, Dr Wilkinson, when they think about dementia will think of Alzheimer's Disease, but there are many different conditions that cause dementia. Tell us about the most common ones. WILKINSON Well the most common certainly is Alzheimer's Disease, probably about 60% of patients will have Alzheimer's Disease. Some people will develop a dementia as a result of circulation changes in the brain, possibly after a stroke or as a result of severe hypertension and that's sometimes called vascular dementia. Some people will have a condition that's a little like Parkinson's Disease, which is called Lewy Body dementia. And this presents in a slightly different way with some physical symptoms and often hallucinations. And some people will have a variant of Alzheimer's Disease or a separate disease which affects a different part of the brain called frontal dementia or frontal temporal dementia and this tends to disturb what we call executive dysfunction and so people have a slightly different presentation, often their memory isn't quite as bad as someone with Alzheimer's Disease but the behaviours will change. And of course there are conditions, much rarer, which may cause extra fluid pressure in the brain or infections in the brain or head injuries indeed can sometimes cause some form of dementia. ROBINSON Why do you think that dementia is still something kept so much within the family and really so little discussed still? WILKINSON Well I think some of it is actually simply because of this idea that many people have had that it's what happens when you get old and so the initial forgetfulness which turns into the more significant memory loss and this inability to take in new information and this inability to learn from experience, is confused just with normal old age. And of course there's always been a relative ageism in our society, I think, that regards older people as perhaps not as - as worthy of intervention as younger people. ROBINSON Do you think that it's partly fear, because one's reminded, I suppose, when thinking about Alzheimer's or dementia of perhaps where cancer was 50 years ago? WILKINSON I think it's very similar and I think that about five or six years ago when there weren't really any treatments available I think there was - there was a tendency for people to not want to transmit bad news, there was a sense of why would I bother making a diagnosis of dementia if there's nothing I can do about it, it's only going to upset people. But of course I mean there are two things wrong with that, one is there is something we can do about it and it doesn't have to just be drug treatments but also it's important that people understand what's happening so they can make plans. ROBINSON Well Dr David Wilkinson we'll be coming on to some of that later on in the programme. Thank you for the minute. WAITE Well James McKillop is on the line from our Glasgow studio and James has a form of vascular dementia, that Dr Wilkinson mentioned there, caused by a series of mini strokes that affected the supply of blood to his brain. He was diagnosed in 1999. James, how did you first realise that something was wrong? MCKILLOP Well I think it mainly started at work. I was forgetting how to do routine procedures, things that I did day-in, day-out, week-in, week-out, year after year. And what I had to do was consult my works' manual. It was puzzling at first why I couldn't remember how to do it. And what it meant was working longer unpaid hours to try and keep up. So on the surface I was still managing but was paddling underneath to keep afloat. WAITE And how did things - I mean how did your behaviour affect your family? MCKILLOP It affected it quite badly. As things were going wrong in my working, social and family life I became increasingly frustrated not knowing what was happening and unable to make head or tail of it. Dementia was the last thing on my mind. Behavioural problems ensued and I gave my wife and family a really miserable time. I accused them of all sorts of things, as in my mind at the time they were in the wrong. With hindsight it was the illness working on me. A diagnosis changed everything as they realised I was ill. With medication and a realisation that I was at fault things have greatly improved. They know now to take account of my poor memory. WAITE And what do you say to people James who are finding themselves with this condition, in the position you were a few years ago? MCKILLOP Well I try and give them encouragement that for some people they can turn their life around, it really depends on what stage you're at and the effort you put into making it. I've met quite a number of other people and we were all sat at home doing nothing for months until we were dragged back into the community by dedicated people. So I believe that you should join a self-support group, to meet others with the same illness as yourself. WAITE So you were a bit fearful were you to begin with and isolated yourself? MCKILLOP Yes, I was very frightened when I was told the diagnosis because of what I'd - I used to work in hospitals, mainly mental hospitals, and I saw a lot of people of dementia, I saw how they walked, looked and acted and I thought oh my god, this has happened to me, any day now, it was really very frightening. WAITE Well you got involved in setting up, I know, the Scottish Dementia Working Group, which is run by people like yourself with dementia and funded by Comic Relief, amongst others, what does that involve, what does the group try to do? MCKILLOP Well the Scottish Dementia Working Group is almost unique in the world. It's a group of people with a diagnosis of dementia or a related condition who meet to campaign for issues which affect them. We run the group and it is our group, for example, where we accept contributions from supporters only people with dementia are allowed to vote on any matter, it is not a support group, although people do get a lot of support from coming in and being able to express themselves freely among their peers. There is great camaraderie in the group. We hope to see local groups set up all around Scotland and to campaign for issues that are dear to us. WAITE And I know you object, don't you, to any idea of pity, you're living with - not suffering - living with dementia and if people would make a few allowances you could live with it reasonably? MCKILLOP That's right. I'm actually quite happy with the quality of life now compared to what it was like before diagnosis. Basically it's because I've received a great deal of support from very dedicated people and they have helped me turn my life round and become what I am today. WAITE Well James, thank you and please stay with us. ROBINSON Well let's hear now from Barbara Pointon, who'll be known to everyone who saw the documentary Malcolm and Barbara - A Love Story. It was broadcast six years ago but it remains really a definition of the disease for many of the people who saw it. Barbara, for those who didn't see the programme tell us a little bit about what happened to Malcolm and as a result what happened to you. POINTON Malcolm was diagnosed in 1991, there were two years of problems before that and getting an early diagnosis is a real issue in dementia. And very gradually Malcolm lost his ability to deal with everyday things, it is learning unravelled in the order in which it was - in reverse order in which it was learned, it was fascinating to watch. And then when the documentary was made that was the point when Malcolm had gone into a very frustrated, aggressive phase and that's one of the hardest phases of the illness. And it followed him through to when he went into a nursing home. ROBINSON Because both you and your husband are talented musicians and had been Cambridge dons. POINTON That's right. And interestingly the one thing that persisted with Malcolm was his piano playing, even when by the tests he was said to be severely demented he could still play the piano. And I remember once a nurse asked him to count back from a hundred in tens, who in their right mind wants to do that anyway, and he of course stumbled, couldn't do it and he smiled sweetly at the nurse and said - And can you play the piano? In other words we must celebrate what people can still do, not emphasise what they're losing and what they can't do. That's how I have tried to look at things along the line. ROBINSON What was wonderful about that programme was that although it showed Malcolm hitting out at you and striking out at you and how much you suffered as a result, still you understood that some kernel of his personality remained. POINTON Yes Malcolm the person is still there and he's still there now, even in the palliative care stage. I can see it in his eyes. The person doesn't die but you're kind of stripped away of all the things that we take for granted - our health, our wealth, our social life - all the other things and we're reduced to who we are and that's a tremendously humbling experience. ROBINSON Why did you agree to make the film? POINTON Well to me this illness, well it was such a shock, I had no idea that people as young as 50 could have dementia because it was referred to as senile dementia at the time. And I did it because I wanted something good to come out of this news, that Malcolm had got a degenerative disease, and I hoped by telling it as it is that people would understand a little bit more about what dementia is, what living with dementia is, I hoped that as a result there'd be some improvement in services for people with dementia and I also wanted there to be more money to be put into research for dementia. In other words, putting dementia research and care on a par with that for cancer - that's what I hoped would eventually come out of it. ROBINSON Barbara Pointon, stay with us if you will, and we'll be hearing more from you later on in the programme, but thank you for now. READER Dementia cannot be cured. Drugs are currently available to treat Alzheimer's Disease which can slow down its progress or reduce some of the symptoms for a time. They may also be helpful for people with other types of dementia, such as vascular dementia. WAITE Well as we've been hearing dementia is an umbrella term which covers a number of symptoms that include loss of memory, judgement and reasoning, as well as changes in mood and behaviour. The most common disease in which dementia is present is Alzheimer's of course, a condition first discovered almost exactly a hundred years ago. In that early part of the 20th Century many other diseases featuring dementia were also identified - like Pick's Disease and vascular dementia. But experts on the subject, like Professor Simon Lovestone, of the Institute of Psychiatry at King's College, London and Rebecca Wood, chief executive of the Alzheimer's Research Trust, they agree, it was the discovery of Alzheimer's Disease which was the most significant milestone in our growing understanding of dementia. WOOD The name Alzheimer's became known because of the work of Dr Alois Alzheimer, who was a German physician. And he gave a famous lecture in 1906 on the work with the patient called Auguste D and Auguste D had been admitted to a lunatic asylum because of her insane jealousy of her husband but she had all sorts of other strange symptoms. And one of these things was memory loss and hallucinations. Alois Alzheimer was very interested in her and he wanted to follow her progress. He asked that when she died her brain was actually sent to him. LOVESTONE He did a post-mortem and he saw in the brain of this lady two striking abnormalities - one of them is called a plaque and the other is called a tangle. And the plaque is outside of neurones and it's an accumulation of a substance that we now call amyloid and the tangle is a sign that the neurone or the brain cell is actually dying. But despite this fantastic excitement at the time nothing then really happened until the 1960s. It's not easy to know for sure but I think - and I think lots of people think - one of the reasons is because Alzheimer and his colleagues described this disorder in a young person, in this lady in her 50s, and it was thought for the remaining 50 years that this was a disorder of young and middle aged people. And when elderly people lost their memory or had problems with cognition it was thought to be just age. ARCHIVE ROTH How old are you now? PATIENT I'm 80. ROTH Are you. One way of studying memory in humans is to examine defective memories. WOOD In the 1960s there was a famous paper by Professor Sir Martin Roth at Newcastle and this sort of resurrected the disease. And people began to take notice of it. ROTH This old lady has a condition, loosely called senile dementia, and extensive memory loss. This patient has been in hospital for five years. WOOD That group was looking at the clinical symptoms of patients, they were following patients through life, through late life in dementia and then looking at them after death and that sort of brought it all to light again. ARCHIVE ROTH Do you know where you are dear? PATIENT How do you mean? ROTH What sort of place is this? PATIENT I don't know. WOOD Probably the most important breakthrough in research, starting off Alzheimer's research proper, was in the 1980s when Professor John Hardy, a UK scientist, discovered that one of the two types of protein that were found in the brains of Alzheimer's patients was something called amyloid. LOVESTONE And then John Hardy and his colleagues discovered changes in the gene that make the protein that makes amyloid. ARCHIVE HARDY Now we've found that in families with a change in the structure of the amyloid they get the disease and we can be sure that that amyloid protein is what's at the centre of the cause of the disease. For the foreseeable future it's going to be impossible to reverse the disease, what you want to do is to stop it progressing realistically. So you want to design a drug to stop that protein building up. LOVESTONE And so the whole thing started to fall together in this really wonderfully explanatory hypothesis that we call the amyloid cascade hypothesis. And this hypothesis, which I think John Hardy was the first to articulate, really explains in skeletal terms everything about Alzheimer's Disease. So it tells us how plaques form, how plaques give rise to tangles and how tangles give rise to dementia. ARCHIVE REAGAN I, Ronald Reagan, do solemnly swear [that I will faithfully execute] that I will faithfully execute... WOOD One of the things that was also very significant in the whole history of Alzheimer's I think and shouldn't be underestimated is the revelation by Ronald Reagan that he had Alzheimer's Disease. ARCHIVE REAGAN ... preserve, protect and defend [the Constitution of the United States] the Constitution of the United States, so help me God. WOOD Psychologically this was a huge admission because in the past people had hidden it, if you think of people like Harold Wilson and other famous people who had just very carefully faded from view, rather than actually making any announcement. Ronald Reagan, I think, was incredibly brave and so was his family to make the decision to reveal the fact that he had Alzheimer's Disease. NEWS CLIP President Reagan's wife, Nancy, left many in the audience in tears. NANCY REAGAN We learned as too many other families have learned of the terrible pain and loneliness that must be endured as each day brings another reminder of this very long goodbye. WOOD There's a huge amount of research going on at the moment in lots of very promising areas and it's quite difficult, I think, to decide exactly which route to take because it is such a big area and so little, relatively, is known about the disease. But there are some really interesting tacks. For instance, the Alzheimer's Research Trust is funding some work into diet for the first time this year. But also things like the link with diabetes - there does seem to be a very strong risk if you have diabetes of increasing your risk also of Alzheimer's. So there are certain links that it's worth us looking into further. But there is a huge range of stuff that could affect Alzheimer's and we just don't know enough about it yet. LOVESTONE In studies in the laboratory, in cells and in animals, these drugs have already been shown to reduce the fundamental sort of processes of Alzheimer's Disease - the plaque and tangle formation. And so it's very likely that they will do so in people. Now the reason why drugs fail is because they turn out that people can't tolerate them, or there's side effects, or they just don't do what they're meant to do well enough. But the fact is, is that they have already been shown to affect the basic biochemistry and the fact that there's so many of these drugs and that there are already in quite advanced clinical trials in some instances is terribly exciting. WAITE Professor Simon Lovestone and Rebecca Wood, chief executive of the Alzheimer's Research Trust. Now Dr David Wilkinson, an upbeat message there from Professor Lovestone, hope for the future, would you agree, vaccine, stem cells, new drugs? WILKINSON Yeah I would, I mean I think the - I mean the problem is that amyloid is being produced by us in all our lives, it's just that the production line goes wrong occasionally and you tend to get the wrong form of amyloid which then builds up and this is - our normal brain mechanisms for getting rid of it are put under stress as we get older, we're just essentially living past our sell by dates as Homo sapiens. And I think that what we need to therefore do is to try and be healthier younger and I'm sure that if we can improve a lot of the things like our cardiovascular health, our exercise, our diet, reducing diabetes and hypertension - these sorts of things - I think it'll have a big effect on the number of people who are going to get amyloid, get Alzheimer's Disease, and I think we have got some really - as Simon says - some very exciting projects. We were involved in a vaccination project which is still going - still ongoing - which seemed to get rid of the amyloid from the brains of patients who had it, there are a number of drugs as well that are looking at that. WAITE Talking of drugs and that's in the future of course, at present the big concern, one of the biggest concerns at the moment, is the government's possible withdrawal of the only drug that is said to help alleviate the symptoms of Alzheimer's. WILKINSON Well I mean this is an absolute tragedy and it's completely scandalous and one can't understand how NICE has come to this decision when there are at least 30 studies demonstrating clearly the benefits and thousands and thousands of people up and down the country - patients and their carers - who are living proof that these drugs make a difference. One cannot really conceptualise how a society like ours can withdraw the only available treatment for such a fundamental illness, which is really a major healthcare priority for this country in the next 20 or 30 years. WAITE Well let me bring in James McKillop again in Glasgow. James, this is something you're very concerned about, what are you doing about it at the Scottish Dementia Working Group? MCKILLOP We have fought a long campaign to try and ensure that drugs for people with Alzheimer's are not withdrawn in Scotland. Admittedly they do not help everyone, in that case they should not continue to be prescribed. But they do help so many people it would be criminal to withdraw them. I know of many people whose lives has been transformed by the drugs. The group has met the NHS Quality Improvement Scotland I think they've convinced them it would be madness to withdraws the drugs. We've met members of the Scottish Executive and we've presented a petition to the Scottish Parliament. The Glasgow group also looked at all the Glasgow MSPs and they believe that one of the groups in the Scottish Parliament are writing to the NICE committee. So we have been fighting it tooth and nail and we hope it is not withdrawn in England, we really feel for them. WAITE NICE of course being the National Institute for Clinical Excellence. Dr Wilkinson, Barbara was just touching on the point that how comparatively little research money is spent though investigating dementia compared to other high profile conditions like cancer. WILKINSON Absolutely, when you think about the cost of Alzheimer's Disease, which is more - the direct costs of Alzheimer's Disease in this country is more than the cost of stroke, heart disease and cancer in the elderly and yet what we spend on research on Alzheimer's Disease is 10% of what we spend on heart disease and only 3% of what we spend on cancer research in the elderly and it just doesn't make sense. WAITE So it's sort of £11 compared to £300 - is that the sort of ratio of difference of spending? WILKINSON That's the sort of thing. WAITE ... in fact it affects more people than cancer, the numbers are rising daily, the cost of care is very large so if there were proper research and drugs or whatever came up then all this could be reduced. WILKINSON And I think it will do, I think that the drugs we've got at the moment, I mean although NICE seem to be unable to comprehend this, do actually alter the course of the disease. And if you could prevent the condition becoming manifest for five years you would halve the prevalence - the number of people in the country with the disease and all the sort of ongoing costs that that would provide. So I think it's very important to have treatments, both lifestyle treatments but also the drug treatments which will actually minimise the impact of the disease and therefore reduce these enormous burdens, both to families and to the state of course. WAITE Well Dr Wilkinson and James McKillop again thanks for the moment. ROBINSON You're listening to You and Yours on Radio 4 with John Waite and Winifred Robinson, the time now is 26 minutes to 12 and this is an edition of You and Yours devoted to the subject of dementia. In a moment we'll be hearing from a family where the father, who's 61, is in the early stages of the condition and we'll be discussing the difficulties that many people experience in getting help. And then at 1 o'clock it'll be the World at One with Nick Clarke. READER As dementia progresses the person starts to lose the ability to perform everyday tasks, such as eating, washing and using the toilet by themselves. Family carers will often help people with these tasks but many will have to get support from care assistants employed by social services. Because this care is means tested many people end up having to pay towards their care. ROBINSON Throughout our series this month we'll be following the lives of a family who've agreed to share their experiences of living with dementia. Carolyn Atkinson met the Whitcombes, from Shropshire, who found that life altered dramatically three years ago when David was diagnosed with dementia - he was 58 and he'd had symptoms for almost a decade. WHITCOMBE I'm David Whitcombe and I've got Alzheimer's. I'm a father and a grandfather, of course. MRS WHITCOMBE And a husband, I hope I fit in somewhere dear. WHITCOMBE Sorry. MRS WHITCOMBE You're a husband too. WHITCOMBE I'm a husband of 38 years almost. MRS WHITCOMBE And I'm Sue Whitcombe, David's carer and his wife. WHITCOMBE We are very close and yes nice friendly family. CUNNINGHAM Hi I'm Jo Cunningham, I'm David's daughter. I'm 33, married with two kids, we live down the road, fairly close to mum and dad, so we see them on a fairly regular basis. He has a great relationship with the children and yeah it's really good to live so close by, knowing that we're there to give the support that we need to. MRS WHITCOMBE We met at teacher training college well over 40 years ago and as there were three women to every man I think I did quite well to get my man. WHITCOMBE She did marry the best man - me. But now I'm the worst man she could have married. MRS WHITCOMBE But you can't help it David, you know, it's just how the illness is. ATKINSON So what do you feel the Alzheimer's is doing to you? WHITCOMBE Well it's making me almost nothing like I was. That's the problem. I have changed as a person dramatically. CUNNINGHAM You just do really strange things and really extremes of personality I think, for instance if he saw somebody drop litter in the street he'd pick it up and go running after them and be really irate and really angry about it. I remember once very near the start of the illness and he'd seen somebody driving through the village here very fast, so he followed the car and went and hammered on their front door. MRS WHITCOMBE We'd suspected something had been wrong for quite a while didn't we love? WHITCOMBE Knowing about Alzheimer's it was almost a relief to hear that because for many, many years before that I thought I can't do this, I can't understand that, obviously not interested in life because I don't want to remember and understand these things which I always did so much and I was so bright, brilliant at crosswords and this is why you can get so depressed with this sort of illness when your life's changed dramatically, when you've had a good and great and successful life and suddenly it can almost go away. MRS WHITCOMBE Coming up to retirement I did feel bitter, my retirement wasn't going to be what we thought we'd be doing together - travelling here, there and going for walks. It was going to be dramatically different. ATKINSON And what was life like - I mean what were you doing, what jobs did you do and your interests? WHITCOMBE Well dare I say it - I was a successful rep for Equitable Life. ATKINSON You were a real high flier there weren't you. WHITCOMBE Yes and I moved to Shropshire and I had to take over a thousand clients. ATKINSON Apart from work what was your other big passion? WHITCOMBE Running I think because I loved running. So yes I did triathlons, I loved the swimming and the cycling and the running and yes. ATKINSON And Sue did you do this? MRS WHITCOMBE No, I watched David, I trailed behind watching. WHITCOMBE Can we have the meal please? MRS WHITCOMBE Which is a hint from an Alzheimer's person that his routine is being disrupted. ATKINSON It's lunchtime now, that's the top hint. WHITCOMBE Yes please, I'm starving hungry. ATKINSON What are you having there? WHITCOMBE This is bread, which I bought this morning but what's it called Sue, how you made it? MRS WHITCOMBE Sandwiches. WHITCOMBE Sandwiches! I was thinking toast. No, sandwiches. I am David witless and I've accepted that. MRS WHITCOMBE With David's Alzheimer's his understanding has gone very early on, quite early on in the illness, it's different with every person. So I have to be quite specific and I noticed you'd be putting things - you'd be asking me doing the crossword - what's a two humped animal - and I'm thinking well he should know it's a camel. WHITCOMBE I can't forget similar words. Your name is Carolyn but I would think of you as Marilyn. MRS WHITCOMBE It's the rhyming you like isn't it, you like to rhyme words don't you because that helps you to remember. As he's lost the pictures in his mind, he doesn't know what a jumper is, a polo shirt or a T-shirt. So what I've had to do is actually label the drawers, supporting the memory that he's losing all the time. ATKINSON By having the items labelled do you feel that does help you? WHITCOMBE Yes, when I've been told to wear a T-shirt or a jumper or something like that, I don't really know what is a T-shirt, what's a jumper, what's that because is the sort of thing I've forgotten completely which is a sign of how many brain cells have gone. I've actually found an answer to keep going through a bit later night - word searches, this is the latest one I've got to do. Handle with care. MRS WHITCOMBE It's Handel - H a n d e l, HHH so you're looking for musical terms like andante. WHITCOMBE But you know I'm not interested in those, I just want to find the words. Water music, I've just got to look for w a t e r - it's a bit hidden, here it is w a t e r m u s i c - cross it off, that's it. MRS WHITCOMBE Because we can't talk so much together and discuss things it changes the whole relationship. We used to banter a lot, didn't we, and joke with one another a lot, it's all gone, the relationship is very much a carer and a patient rather than a husband and wife, which is very sad but at the same time you make the best of what you've got left, you have to. Some evenings we try and have a chat but I get frustrated because you don't understand. WHITCOMBE This is all I can say for her - I love you, it's mostly love and then... MRS WHITCOMBE Yeah, the emotions come up. WHITCOMBE ... dislike for what she's saying and telling me to do. And here bang on time is my butty Gavin. Hello butty Gavin. GAVIN Oh how are you doing, how are you today? WHITCOMBE Alright, yes I think I'm doing alright. We'll go for a local walk. Alright? GAVIN Yeah lovely, yeah. WHITCOMBE Good. MRS WHITCOMBE Do you want to go and get your stuff ready then, you might want your waterproof. Right. ATKINSON Everyone glosses over and you're putting on a brave face, I mean everyone does it. How is it really, what's the actual truth? MRS WHITCOMBE It's devastating. It's not going to improve, you have to make the most of what you've got. CUNNINGHAM An illness like dementia really does just dominate everything. Everybody who has a loved one with dementia will tell you that sometimes it can be really hard to see any positives at all. You know it is quite sad that he did say to me a little while ago that he can't really remember me and my brother growing up, it's really tough. MRS WHITCOMBE One or two nights I've sat there feeling very self-pitying and I've had my drink of chocolate and had a little weep to myself but if you take that route it's hopeless, you just spiral down. And in fact I think one of the nurses at the local hospital actually said try not to think of what things used to be like before, nobody can say it's easy dealing with the illness but you do have to actually find a middle way. It's a case really isn't it love, we go from day to day, otherwise all sorts of scenarios come into your mind that you don't want to think about. WHITCOMBE All my life I used to think about the future too much. Now I just want to think about today. ROBINSON David Whitcombe and his family talking to Carolyn Atkinson about their life with dementia. James McKillop, still with us in our Glasgow studio, he has a form of vascular dementia, diagnosed when he was 59. As we've heard every case is different, how do you cope with the uncertainty though of not knowing what is going to happen to you in the future? Hello James McKillop? MCKILLOP I didn't realise you were speaking to me. ROBINSON I'm sorry. MCKILLOP Can you repeat the question please? ROBINSON How do you cope with the uncertainty of not knowing what's going to happen to you in the future? MCKILLOP I don't worry about it too much because there's so many other illnesses apart from dementia in the world and so while I hope that the latter stages are short and sweet for the sake of my family, I mean I've had some of my healthy friends commiserate with me when I was diagnosed and I've been to their funerals. So you don't know how much time you have left. So I just take each day as it comes and hope for the best. ROBINSON James, we heard there what David Whitcombe does practically to try to help him cope with his wife labelling some of his clothes because he can still read, even though he can't remember the difference perhaps between the different garments. Do you have coping strategies like that? MCKILLOP Yes, well what I do is my wife writes up on a white board what I have to do every morning. She lays out fresh clothes for me everyday, taking account of the weather. And she writes up things like wash and shave because shaving's no longer automatic, take my medicine and any other things I need to be doing that day. I have a calendar and she transcribes them on to bigger writing, so it's on the board for me to come down and look at each morning. ROBINSON Barbara Pointon, when the documentary about you and your husband Malcolm was broadcast in 1999 he was then expected to die within six months and yet he's still alive today. You have to plan, of course you do, but it must be very hard when you don't know at all what is going to happen. POINTON That's right. He was given about six months to live when I brought him back from the nursing home to look after him back at home and here we are sort of five and a half years down the line. And it's very interesting that the - I asked the consultant why is Mark living so long and he said, it's continuity of personnel is very important for people with dementia - the same people doing the care everyday. Tranquillity of environment and also he can - he can put all his energies then into just living. And I think that's why care at home possibly has made him live very much longer than he was expected to. ROBINSON Well you recently featured in a Panorama documentary on BBC 1 about your battle for help caring with Malcolm and he now has something that is called NHS continuing care at home. What does that mean? POINTON Continuing care is free care, it's not means tested. And the whole area of paying for care is very complex and very fraught and the only free care is continuing care. And this - it's always puzzled me, always through this illness, because social services care is means tested and healthcare is NHS care and it's not, it's free. Now this is a question I would like people to address: where does social care end and healthcare begin? ROBINSON Because if you simply said you couldn't look after Malcolm anymore he would go into hospital. POINTON Yes, that's right. Or wherever. Because this demarcation point is bogus. And so what they do is they define care by who gives it and they say it couldn't possibly be healthcare because I'm not a nurse. So I kind of went one battle after another to try and get free care for Malcolm and the continuing care is free care and it does meet most of his needs. But I think that we've got to actually tackle this whole thing about care is care is care. And dementia care is very special sort of care, it's quite different from giving care to the frail and elderly because of the overlay of dementia which makes even the simplest tasks like washing, shaving and dressing quite fraught and difficult. ROBINSON I must say looking at that programme I couldn't believe that I could find within myself the sort of love that you obviously found within yourself for him. POINTON I think it requires a lot of patience on the part of the carer and I do think it's almost impossible to do this job as a family carer unless there's real love to start with and a good relationship. ROBINSON Dr David Wilkinson, you're a psychiatrist specialising in old age, how much help is available? WILKINSON Well apart from the immediate access to services, so that a diagnosis can be made, and I think that's very, very important because clearly there are some conditions that can be treated which may be causing the dementia. But you need to have access to some sort of service or memory clinic to get a diagnosis and after that then there are treatments available in the early stages. And then it's a very - depends very much on the family setting, I mean how - if the patient's living alone for example they will need a lot more domiciliary care early on in the disease. ROBINSON Why though do people always seem to have to fight for it? WILKINSON Well that's something that I have to say everyday - it's just the - the NHS today is just so strapped for cash that everybody has to fight for everything. And unfortunately, I mean it has to be said, that I think older people are just not valued in the way that others are, so that services - for example, I mean the National Service Framework for Mental Illness provided a lot of community based services for younger people with mental illness and completely ignored the elderly. We're trying to redress that with some new guidance but each time something happens like that of course it takes money away from the possibility of providing services. And we need social services, we need voluntary services, we need health services to combine to provide some sort of seamless care, so that people don't just end up in hospital or in a home but that the services are provided which are appropriate for them and their families at home and like Barbara suggested. ROBINSON Whenever you talk to people who have experience of dementia a recurring theme seems to be that when people are sent to the psychiatric unit it is a disaster, in the case of Malcolm you see in the documentary Barbara picking up - his trousers are wet, he's got two pairs of wet trousers in his bag, his slippers are sodden with urine. Has anything improved in that area of care since 1999? WILKINSON Oh I think - I think so yes, I think quite dramatically. I mean certainly older people's mental health wards I think are a lot, lot better than that. ROBINSON Can I just briefly bring Barbara in before we leave it? POINTON I think there's still a very long way to go, very long way to go. And a lot of money is actually being wasted on assessing dementia patients, as to whether they - as to who should pay for their care, a lot of that money could be saved if all care was free and you didn't waste it all on deciding whether it was NHS or social services care and then that money could be put into improving services. ROBINSON Well we'll leave the discussion there for the moment but we are going to come back to it throughout the month. Barbara Pointon, Dr David Wilkinson, James McKillop - thank you all very much. WAITE That's all for today as Winifred said but tomorrow continues are month long strand on dementia - a visit to a memory clinic, generally the first port of call when your GP suspects you might have dementia. But as we said at the beginning of the programme, in coming weeks our series won't be all doom and gloom as we hear about the hope and at times even humour amongst those living with dementia. CLIPS It was lovely being able to dance with him. Although he had dementia he could dance when he was young and it seemed as though the movements come automatically, that time meant everything. It was good for me because it took me out, gave you a social life. One of my paintings of our lovely fat ginger cat Harry, his in the dementia calendar for this year - November. David had never been at all artistic, always very good at words and poems, but he discovered through going to these painting classes, funded by the Alzheimer's, that he's just produced a talent he didn't know he had, as the brain's emptied of memories it's given him something else to concentrate and he's surprised all of us. Can you see that sentence there, could you do what it says? Yeah close your eyes. But can you do it for me? That's it well done, okay. Is it bed time? WAITE Taste of things to come and it isn't all doom and gloom Barbara? POINTON No, not a bit of it because I remember Malcolm hated dancing, it was as much as I could do to drag him on to the dance floor for the last waltz. But when the Alzheimer's took a hole the inhibitions fell away and I found I could get him on the dance floor and he could wiggle his bottom with the best of them. WAITE And I know we were talking before and I've seen your documentaries, you know, it's all in the eyes isn't it, and you can see sometimes in Malcolm's eyes the liveliness there, the person there, the humour there, the love. POINTON A wicked sense of humour and sometimes when he's feeling quite cross he'll put a foot out and trip us up, just to get his own back on the fact that we've just been giving him a big wash. WAITE Well we'll be hearing, as I say, some of the more - if you can use the word - positive things about dementia over this next month. We'll be hearing, for example, from a writer who was so inspired by the raw emotions and the unique expressions of people with dementia he spent the last 10 years in conversation with them, creating stunning poetry from what they had to say and collecting some of their very humorous insights. I've interviewed this gentleman, he's very inspiring and they're very, very funny, their very humorous insights into living with the condition. Back to the Transcripts homepage Back to the You and Yours homepage The BBC is not responsible for external websites

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