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	TX: 30.11.05 - Dementia: ROUND UP  PRESENTERS: WINIFRED ROBINSON AND CAROLYN ATKINSON
	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. ATKINSON Hello and welcome. Today we're devoting our entire programme to the subject of dementia, it draws to a close our month of reporting on and discussing the condition. 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. ROBINSON Three quarters of a million people in the UK have dementia and it affects those in all walks of life. We've heard Alan Bennett recalling his mother's mental and physical decline; David Whitcombe from Shropshire explained how dementia has transformed him and there's the collective fear of dementia, something the writer and broadcaster Joan Bakewell explored. BAKEWELL When memories falter our very identity is threatened. Even what we good-humouredly call "senior movements" can cast a shadow. Something as trivial as - Where did I put my keys? I know the face but what's her name? Is that how it begins we wonder. WHITCOMBE I am David witless and I've accepted that. I have changed as a person. I was so bright, brilliant at crosswords and you know great and successful life and suddenly it can almost go away. BENNETT "Do you remember dad?" I ask her. "Oh yes I remember your dad." "What was he like?" "Your dad? Oh well ..." and she studies a bit, "well, he was a love." "And do you know who I am?" "You're a love too." "And what's my name?" "Oh I don't know that." And she laughs again, as if this isn't a piece of information she could be reasonably expected to have. ATKINSON Alan Bennett. The writer and poet John Killick offered an insight into the way people communicate as the condition progresses. He's worked closely with people with dementia for 10 years, analysing their words and recording them as a kind of poetry. KILLICK "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." And there you've got a perfectly constructed poem describing what was in his imagination. 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 a present where there were demands being made upon him. ROBINSON One in three people with dementia live with their families and it takes its toll on everyone. The writer Margaret Forster described the slow decline and death of her mother-in-law. Jim Radburn revealed how his wife became violent and even smashed up their home. Alice Phillips described how she coped by keeping the truth of the diagnosis from her husband. PHILLIPS If I'd 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. RADBURN Sit down sweetheart, sit down. The idea that you have of little old ladies sitting in the chair being looked after is nothing, it is nothing compared with what reality is. I've got this photo album here which shows, as I'm looking through now, large dining room chairs turned upset down and that is a one inch thick ashtray which was just shattered by Tina slamming it down. FORSTER Her face was like a skeleton's face and she was struggling to breathe and there's this huge intake of breath and then silence and you think thank god it's over and then it starts again - the wheeze. And I did actually try to close her mouth and put my hand over her face. And what was extraordinary was the incredible strength with which she opened her mouth and of course I immediately took my hand away. ATKINSON Margaret Forster. Some of the people who've shared their experiences with us this month. ROBINSON We've had hundreds of calls and e-mails from you and we'll be putting some of your points to the care services minister, Liam Byrne a little later on. With us is Dr David Wilkinson, a consultant in old age psychiatry at Moorgreen Hospital in Southampton and Barbara Pointon who's been looking after her husband Malcolm for the past 14 years since he was diagnosed with Alzheimer's Disease, you may have heard them both in our opening programme about dementia a month ago. Dr Wilkinson, first of all, we've looked at a lot of problems and worries over the course of this month can you tell us what is your main concern. WILKINSON Good morning. Well clearly for many of us working in the field of dementia care having drugs available for the last eight years or so for the treatment of Alzheimer's Disease has been a real watershed in care and the potential reversal of the government's, through the NICE committee, decision to support the use of anti-dementia drugs could be a real setback for a couple of reasons really. I mean one is that it's a complete denial of the patient and carer's experience of these drugs and secondly, because of the effect it would have on services generally. I mean most PCTs are really strapped for cash and I know that they - if they have any reason to disinvest from a clinical service then the non-support of these drugs by NICE is a major one they'll feel they'll have to and that will mean the whole memory clinic infrastructure could be threatened which has had a huge impact on helping reduce stigma and improve diagnosis and get treatments to people for this terrible devastating condition. So I think that would be a real setback and I think lead us only of course to have to argue again for resources in a few years time when the next treatments come. ROBINSON What are you suggesting - that if the drugs go other services will go too? I mean surely there's no suggestion of that, there's no evidence for that? WILKINSON I think there is because of the pressures that PCTs are under they will need to withdraw the money they've put aside for the funding of these drugs if these drugs are not supported by NICE. And much of the funding that goes for these drugs has been to support the infrastructure as well. So I think there is no doubt that if these drugs are not supported, no matter what weasel words the government may use, services will be reduced to patients with dementia. ROBINSON Barbara Pointon, what is the priority for carers like yourself? POINTON Well for people like myself dementia is a serious terminal illness and it goes on for one heck of a long time. And the one thing it would help so many people would be an end to charging for essential care. In my view, because of loss of cognition, giving care to someone with dementia is highly complex, very skilled, it requires training and in my view it is not your normal social care. ROBINSON We'll be returning to both of those points a little later on in the programme. For the moment Barbara Pointon and Dr David Wilkinson, thank you. ATKINSON Well we put this question of care - who should pay for it and who should provide it - to the care services minister Liam Byrne. Campaigners believe the current system of assessments is totally unjust and discriminates against people with dementia by wrongly classifying it as a mental illness, when in fact it is a physical disease of the brain, accompanied by a physical decline. The old rules, often referred to as initial guidance, are about to be replaced with new national guidelines on who should qualify for free continuing NHS care. The minister Liam Byrne, who helped care for his mother when she had cancer, says the government is taking steps to improve things for people with dementia and their carers. BYRNE I understand exactly how people feel. I mean when you're in this situation you often I think experience a mixture of extreme stress and heartbreak and you really, I think, feel at your wit's end. And very often what you need to know is that someone is on your side. Now what the government has done is taken some quite big steps to make it possible to care for people outside long stay hospitals, we didn't think that that was the right way for loved ones with things like dementia to be cared for and that's exactly why we introduced things like NHS continuing care, registered nurse care contributions. I think we recognise that the initial guidance that was produced was not perfect and that's why we've had to take some important steps to make it much better. In particular, I wanted to make sure that it took account of the progression of illnesses like dementia and we needed to make sure that people weren't being discriminated against on the basis of the condition that they got. And we needed to make sure that there wasn't a postcode lottery in the kind of care that people got. So the new guidance that is being produced early in the new year is specifically designed to take account of many of those things. ATKINSON And you're talking about the new national service framework for continuing NHS care. People will welcome that but they'll also ask the question - how are you going to make it work, how are you going to make sure that people with dementia are not going to be discriminated against in the way that they feel they are at the moment because it's not seen as a physical illness, it's seen as a mental illness? BYRNE Well I mean we'll obviously invest in making sure that local commissioners understand the guidance and then we need to monitor the way that it's implemented. ATKINSON But a lot of our listeners are concerned that they are going to have to continue fighting in the way they've been fighting at the moment, where you have this artificial divide between social care and healthcare. We had an e-mail from Margaret O'Brien, she says: My father who is my mother's carer is struggling on with only one hour means tested support per day. My mother is in her 10th year of illness, she doesn't communicate, is almost completely immobile, suffers regular strokes, takes hours being fed each meal. We're three months into our personal fight with their health authority to gain NHS support for the father, we don't have the luxury of time. If this doesn't work first time round it's too late for many people. BYRNE Absolutely and I think that the initial guidance was produced absolutely with the best of intentions, it was produced with the intention of making sure that people had the opportunity to care for loved ones at home, outside a long stay hospital. But as we found with the guidance it wasn't perfect when it was introduced, there are changes that are really important that we have to make and in particular we have to make sure that people are not discriminated against on the basis of the condition that they have, we have to make sure that there is really one ultimate test for whether people get care or not and that is their need. ATKINSON When do you expect this new framework to be published? BYRNE Early in the new year. ATKINSON And when will the local authorities and the PCTs have to actually act on it? BYRNE That will be a decision that's finalised when the guidance is published. ATKINSON But for people listening whose family or friends have dementia at the moment is the old system going to continue for quite some time or will the new system kick in? BYRNE Having invested over a year now in getting the guidance right what I really don't want to do is rush it at the last minute. ATKINSON What you're saying is one thing, how it's actually interpreted on the ground is entirely another because we had an e-mail from somebody called Margaret Buntrock, she says her mother suffers from dementia, suffered for over eight years, received hardly any professional help, advice or support. In the latter stages she was diagnosed with ovarian cancer and immediately the situation changed - we came under palliative care at the local hospice, visited at home by doctors and nurses, access to all kinds of medical and practical aids. But, she says, the key thing - the symptoms of her cancer were exactly the same as the latter stages of her dementia - not eating, immobility, incontinence etc. etc. The awful thing, she says, is that the cancer was a good thing, it allowed her to die with some care and attention. So many people would say at the moment it's a blessing to get a disease that actually would bring in some care. BYRNE I think what it's important to say is that very often services for people with dementia I don't think were developed in quite the right way and we were not happy enough that everywhere in the country was delivering care to the best that was available and we've had to take steps to correct that - we published a service development guide in November and that is absolutely key in helping the local health service and local authorities understand just exactly what good mental health and care services for older people look like. ATKINSON When this new framework does come in obviously you hope some things will change but some people will still be assessed as not getting continuing NHS care and a lot of money is going to be spent on assessing people with dementia as to whether they should or shouldn't get that care - you're wasting a lot of money doing those assessments, aren't you, wouldn't it be just easier to give personal care to everybody for free? BYRNE No it wouldn't. We've always had a difference between the National Health Service and the social care system. Of course in an ideal world we would make social care free but the cost to the country would be multi billions of pounds. ATKINSON The Commons health select committee though would disagree with you there - they argued earlier this year that free care is possible and is affordable. Scotland 's done it, why can't England , Wales and Northern Ireland ? BYRNE Well I think there is going to be some interesting evidence emerging from Scotland over the next few months and I think the evidence that does emerge will cause people to look at that again. Let's not delude ourselves that it would not cost several billion pounds. ATKINSON You say don't delude ourselves, we're actually talking about charging someone to be helped to go to the toilet or to be helped to dress or to help to feed - these are basic things. BYRNE People are judged on the basis of how well off they are, what sort of resources they have access to, then they're judged on the basis of what their needs are. I think that framework which we introduced a few years ago has done a great deal actually to help social care professionals focus their resources and their work on the people who need it most. ATKINSON But we've been hearing throughout our series that carers are saying because they have to pay for this personal care they can't afford to do that and so they are sort of going beyond the call and doing a lot, lot more care than they actually can cope with and making themselves ill in the process because they can't afford it, that surely can't be a situation you're happy to see. BYRNE No, and I completely understand the contribution that carers make and that is actually why we've had to increase quite substantially the amount of money that is available for carers and actually make sure that carers have access to rights too. So over the last few years we've actually spent getting on for half a billion pounds in improving things like respite care for carers - 185 million is available this year and we've made a commitment to extend that to about 2007. ATKINSON Well minister another area that people have been e-mailing us about is about the services available for younger people with dementia, that's people of working age. There are currently over 18,000 people living with dementia. Dawn Edmonds e-mailed us to say: My husband Dave was diagnosed with Alzheimer's Disease four years ago, aged 54. She was 45 at the time, she says: We live in Worcestershire where things are pretty grim for everyone with dementia but especially so for younger people who are not recognised or catered for at all, there are no appropriate respite services and it's impossible for me to put Dave into a day centre to play bingo, she says, with a lot of elderly people. I have been fighting for three years. Now in our series we heard from the Loveday family from Northampton . Chris was diagnosed with Alzheimer's Disease a couple of years ago aged 51, he has two children - Daniel aged 21 and Holly who is 16 - and his wife Marilyn is the sole earner. MARILYN LOVEDAY I just react badly at times. I work a 52 hour week. I work at a school as a learning support assistant, I also work for a travel agents in the evening and Saturday I work from 10.00 till 4.30, on Sunday I work from 10.00 till 4.00. I work seven days a week. HOLLY LOVEDAY Before my dad was diagnosed I used to bring friends home and go to my friends all the time. But now it's just basically come home, do my work looking after my dad and basically going off to college and work. MARILYN LOVEDAY At the moment I don't get any help for Chris. He could go wandering off, which I have known him go wandering off and fortunately somebody's pointed him in the right direction to come home. And as yet I've not seen a social worker. And I just don't know where all these people are. I mean I was asked all different questions - how are we coping and one thing and another - and unfortunately at the moment I suppose because we are coping that they've just left us alone. We can't claim incapacity benefit because Chris hasn't worked for the last two years, never mind that he's worked for the last 30 years and always paid national insurance stamps. Two hundred pounds a month that's all we get at the moment from disability living. ATKINSON That's Marilyn Loveday. Now lots of issues that she's brought up - the age of diagnosis, the apparent lack of care, the access to suitable services and financial problems as well because of the age at which she's been diagnosed. What are you doing to aid people who are diagnosed in their 40s, and 50s and 60s? BYRNE There are two sets of actions that we've had to take here. The first, as Ms Loveday mentioned, it's important to make sure that carers do have the right to an assessment of their own needs and that really is why the Carers Equal Opportunity Act, which was introduced earlier this year, is so important. Dementia services have been designed around the needs of older people and not for them and that's exactly why we've had to take steps by publishing a new service development guide for the NHS and for local authorities, which is just actually the first step in a much broader programme designed to improve services and to drive investment. ATKINSON But at the moment I think the latest figures show only 15% of all NHS trusts actually have any kind of specialist service for you if you have been diagnosed young. BYRNE Absolutely, there are too few dedicated services across the country today that are specifically aimed at meeting the needs of younger people with dementia and that's why we have taken this step of publishing this new service development guide and we'll have further things to say after the older people's tsar Ian Philp publishes his next steps document in the new year. I think it's also worth saying that both the Healthcare Commission and CSCI - the Commission for Social Care Inspection - conducting their own review of services and we'll be using their work to provide us with information about where there are gaps so that we can drive service improvement from the top. ATKINSON And this does all come down to money doesn't it, because another key area is respite and the lack of respite care. I mean, for example, Marilyn could well benefit, you could argue, from some respite care and that is not being provided. BYRNE Well I think it is being provided. I mean I think we will never have the ability to provide as much respite care as people who are caring want but that is exactly why the Carers Equal Opportunities Act is so important, so that carers have the right now to their own assessment of their needs. ATKINSON But the key problem with people with dementia is the quality of that care, the people who perhaps are going to take over or look after the person need to know exactly what they're doing. BYRNE Well that's absolutely right but that's exactly why we've got to take these steps to improve dementia services for those people who have early onset dementia. ROBINSON The care services minister Liam Byrne. Well Barbara Pointon who's a carer and Dr David Wilkinson who's a specialist in dementia are both with us. I just want to come to you briefly both for your response. If I could start with Barbara, you looked as if you were about to burst with indignation during some of that interview. What do you have to say to what the minister had to say? POINTON Well if I could just first of all say something that might help carers is that their loved one should be assessed for continuing care first and only when they fail that test should they be assessed for the nursing care contribution. And what is happening is that people are being fobbed off with the cheaper option of the nursing contribution. And for many people who are caring at home they are not qualifying because the care is not being delivered by a qualified nurse, it's being delivered by a family carer and so forth. So that is a real message to carers - argue for continuing care first, it is the law and it should be followed. If the minister is not going to back down on free care for all then I think we do need a different tack and to say that dementia care is not normal social care, it is specialised skilled care, it is healthcare and however much or however little you need of that care it should be free because it is a direct result of an organic disease of the brain and it is a complex form of care. As far as respite's concerned, yes there is this money but I haven't seen it and quite honestly the carers' assessment is a very complex form and all the rest of it but it is an entitlement to nothing because if the money isn't there then you can't be given respite. And respite should be an integral part of everybody's package. ROBINSON Let's bring Dr David Wilkinson in. What did you think when you heard what the minister had to say? WILKINSON Well I thought he was fairly evasive actually. I think the - what one would expect from a politician but I think he's arguing, as Barbara says, that there is money for respite but none of us seen it, none of us who are looking after people. I mean we are being constantly asked not to provide respite in hospital services. ROBINSON But there is more money in the NHS, the evidence for that is overwhelming, surveys suggest that most people believe that the NHS has improved and yet doctors like yourself keep on telling us well there might be more money but there's no evidence. I mean who's telling the truth here? WILKINSON There's no doubt there's more money in the NHS but I think the government's real insistence really on its view of waiting lists and surgery is being it's main priority is what's gone wrong. I think PCTs are extremely pressured, hospital trusts are extremely pressured to meet various guidelines and checklists that the government have issued but the services - the Cinderella services - like older people's mental health are just often neglected because there are no must dos in any of the government edicts, the government is just obsessed with guidance and checklists and pieces of information which really abnegate their responsibility to actually do something, there is no implementation of these guidances because there's no funding behind it and nobody down at the shop floor sees much change. ROBINSON Well we'll have to leave the discussion here, just for the moment, we'll be coming back to you later on in the programme. We know from our listeners letters and e-mails that a huge source of stress and worry is the lack of decent respite care. When it works well respite care offers people with dementia and those who look after them a much needed break. Often though good respite care is hard to find and it's hard to afford. ATKINSON Well one of our reporters Catherine Carr has had first hand experience of the respite care shortage. Her grandmother Doris Carr has had Alzheimer's Disease for the past 10 years and has been looked after by her husband Bill at their home near Evesham in Worcestershire, he is 85. Now Mrs Carr is due to go into hospital to be assessed for a place in a nursing home. Their daughter, Christine, who lives nearby, feels that they could have cared for her longer if they had had the right kind of respite care. ACTUALITY TELEPHONE RINGING Hello? Oh hi Steve, thanks for phoning back. It was really just to find out what the procedure is when we bring mum in. CHRISTINE CARR I'm really, really dreading it, I still don't want her to go into hospital but we just don't know what else to do. ACTUALITY And what should we bring with her - just nightie? Right. CHRISTINE CARR She is going to be so upset. ACTUALITY We can visit can we? That's right, well I think that the thing with my mum is she is probably going to be very difficult about staying there because she is so adamant that she - well she's just so scared of going away anywhere. ACTUALITY - VISITING CHRISTINE CARR How are you? BILL CARR Oh I'm fine. CHRISTINE CARR Catherine, do you remember Catherine? BILL CARR She can't be left, you've got to lock the doors in case she goes out. So you feel that you're in a prison with her. And it's not a big place, it's not. She can understand, if they go out we'll know where they are, so all you can do is keep them with the person who's supposed to be caring for them. You've got to keep - get them to drink and it's our job to do that because they don't want to drink. I'm giving her Complan now to replace the food because she's not eating at all. Now that you've got to tell them how to dress, what to put on. You take it off of a night and you get the nurse thing in the morning. She don't know, she don't know nothing. Conversation's a big thing I think, no one to talk to you, a surprise, when you meet anybody you're talking all the time. ACTUALITY - GENERAL CHAT I used to be the one that was the quiet one. CATHERINE CARR I remember, she used to put in your place. BILL CARR That's right yeah because if we went out to her brother's and played cards and that it was Doris that was always talking, not me. But now it's the other side of the scissor now. CATHERINE CARR And how does that make you feel when ... BILL CARR Ah it's terrible, that's terrible. CHRISTINE CARR If I can just say here various people over the years who we've been in touch with, the Alzheimer's Society in Cheltenham were very, very helpful and started me off on the internet and so on. We got information from the doctor about Admiral Nurses who came to see us and again very caring but for us in particular it was more somebody at the end of the telephone, rather than somebody who would come into the house to help dad with my mum. ACTUALITY - GENERAL CHAT BILL CARR I've not had no breaks. I've not been anywhere. I've had operations while this is all going on and so every time you've got to go hospital she's either got to come with us, she can't be left, or we'll have to arrange for somebody to be with us while we're away. CHRISTINE CARR The Age Concern representative from Worcestershire came to see mum and dad and she gave us the brochures from Age Concern, said she'd try and find us somebody to come and sit with dad, to give him a break, but their helpers are all volunteers, so what happened was, in the event, she phoned up to say that they just didn't have anybody suitable. So again that's somebody you go to for help but try as they might they can't give you any help. And it has seemed a little bit like that, you know. ACTUALITY PHONE RINGING Alzheimer's help line. EVERS My name is Clive Evers, I'm the director of information and education at the Alzheimer's Society. ACTUALITY - ALZHEIMER'S SOCIETY So your mother's - your mother's - you want some respite care for your mother? We get frequent calls to our helpline, people seeking appropriate respite care for those in the middle or indeed the later stages of Alzheimer's Disease and other dementia and there is a real shortage of this important service for people with what is a terminal condition. ACTUALITY - ALZHEIMER'S SOCIETY Has she been into respite before? In the 1980s the NHS would provide a service whereby a person with a dementia would go into the hospital for two weeks, giving the carer a break and then they would return home. Now there are issues about what level of quality care that was but at least it was a system that people knew and understood and was broadly available. That has changed, the NHS has withdrawn from that provision in the main and now it has become the province of social services to assess people as to whether or not they will qualify for respite care and somehow to make that available in different ways. ACTUALITY - ALZHEIMER'S SOCIETY Do you actually - does your mother have a social worker who's helping coordinate the care? CATHERINE CARR Do social services do a good enough job of picking up all of the care places that were available in the '80s in those geriatric hospitals? EVERS I don't think we could say that social services do an adequate job in providing quality respite care for people with dementia because our callers are still expressing an anxiety about the level and the quality of the care provided and indeed its availability and the charges that are made for it as well. WILLIAMS My name is Viv Williams and I work in Worcestershire in Bromsgrove as team leader of community mental health for older people. Any respite, whether at home or outside of the home, works better if it's tailored and person centred, in other words tailored to the needs of a particular individual, their own life history, their own interests and knowledge of that person. CATHERINE CARR How realistic is it to offer something like that because each person with dementia is so different and the needs of my grandma are so particular that it didn't seem that my family managed to find what she needed? WILLIAMS Often where people have particular individual needs it comes down to trying to match perhaps one or two carers with that individual. The carers unit now offer support to carers through grants of £300, which can be used to pay either agencies or family members or well known neighbours and friends who the individual knows quite well or using things like a day support activity or a one-to-one support worker which can be provided either by social services or by health. And more of those are becoming available through the community mental health teams, which came together in Worcestershire earlier this year. CHRISTINE CARR One of these things here is a list of agencies that we had. We had this woman go in from TLC, it's called, it's just wasn't suitable for my mum really because the woman turned up and she just sat at the table with mum, we suggested she had a play of scrabble with her, for instance, just to try and amuse her, she didn't know how to play scrabble. And you know she was - I imagine she usually went to see people who were gentle and old and frail and needed support and help, which is not what my mum was at all - she was difficult and very mentally impaired. ACTUALITY - GENERAL CHAT BILL CARR You can arrange to have sitters in but I feel that's alright but it's got to be arranged, well you're so used to just putting your coat on and going doing what you want to and back but you can't do that - you can't all of a sudden pick up the phone and get a sitter in. It doesn't work, I don't think. ACTUALITY - GENERAL CHAT EVERS Essentially carers need support to continue to care at home and that's what many people want to do. The respite care that they need is required to be of a quality that they can accept, with a flexibility as to when it's made available in a reasonably accessible place, not too far away. It needs to be affordable and the staff that are providing that respite care need to have dementia training. So all these factors add up to what we would regard as quality respite care. Sadly many of these factors do not all come together. CHRISTINE CARR The best help we've had is in the last few months from the community mental nurse and his assistant, Shirley. The Alzheimer's nurse built up a relationship with my mum and took her along to the day centre and initially stayed with her until she became accustomed to it. So that has given dad a break of four hours once a week, which has been wonderful. ACTUALITY - GENERAL CHAT It just would have been nice to have more people like Shirley earlier on who could have helped to take mum off and cope with her for a little while, that would have been helpful but I think people like Shirley probably are few and far between. BILL CARR You think when she's here oh I'll be glad when she can have a day in a day nursing, but soon as she's gone to the day nursing it's not the same, I'm a one person then. CATHERINE CARR Do you feel like you've done a good job? BILL CARR I mean what can you do, I mean we've been married over 60 years. I mean to be quite honest when Doris goes I shall miss her greatly because we've always been together. ACTUALITY - GENERAL CHAT ROBINSON Doris ending that report by Catherine Carr. Well listening to that still are Dr David Wilkinson, a consultant in old age psychiatry at Moorgreen Hospital in Southampton and Barbara Pointon, whose husband Malcolm has had Alzheimer's Disease for the past 14 years. Dr Wilkinson, the picture emerging for Catherine Carr's family there was of a pretty desperate state of affairs which might have improved slightly just recently, though we heard there of a community mental health team offering some limited support, but not enough for Doris to remain at home. What is the situation for respite care like overall? WILKINSON Well it is diminishing I think. I mean I'm just thinking of a patient I had some years ago who was looking after her husband who was clearly extremely disabled and we - all of us - felt that she was going beyond what was expected, continuing to look after him, and said that really he ought to be in long term care and she just said - well now I'll just have him home one more time, I'll have one more respite, and that went on for two years. So those sorts of respites can make a huge difference to the ability for someone to carry on caring for someone in the home, where they want to look after them and where the patient wants to be, and also the requirement for long term beds. And we have in the NHS services been asked to reduce beds and reduce beds over a number of years so that we just don't have that flexibility to offer respite anymore in hospital. We therefore can't do it but social services haven't been able to provide it because they haven't got the resources to do it. And I think it's the one thing that carers persistently ask for is respite and it's the one thing we're signally failing to provide. ROBINSON Barbara Pointon, this business of the quality of the care that is on offer - we've had e-mails from people and interviews with people who've said even if you can afford it there seems to be a real shortage of people who want to do this job well? POINTON Yes because I think caring for someone with dementia requires education and training, both for professional carers and for family carers like myself. And it also actually requires the right attitude towards the person. The one thing that really upsets someone with dementia is being bossy and telling them what to do - they're grown up, they don't want to be told this, that and the other. And we've had some horrendous experiences with respite care, both in care homes and in going to an NHS unit, with Malcolm coming back in a worse state physically and mentally than when he went in and you think why do I bother because it takes me the next four or five weeks to get him up to scratch again. And then I realised that what was happening is that when people with dementia reach a certain stage they hate leaving the security of their own homes. Now it is government policy for people to be cared for at home for as long as possible and why then can it not be more possible to have respite at home? ROBINSON I suppose Barbara it's an obvious - cost - because I presume because of the cost. POINTON No it is cheaper to buy a carer in, live-in carer, for a week who will take over from the family carer or for how many days or whatever than it is to fund a place in a nursing home. ROBINSON How do you know that though? POINTON Because I've paid it. A week in a nursing home for Malcolm would have cost about £750. A week of a live-in carer £450. ROBINSON Dr Wilkinson, we heard the minister Liam Byrne in his interview talking about the right to carers assessments and we heard Barbara say that the problem with them is that when you have filled in the forms they don't actually legally entitle you to anything at all, you are entitled to the assessment but nothing beyond that. In your experience are they making very much difference? WILKINSON A little. I mean to be fair I think there are - there are more patients than the carers getting approval for NHS continuing care, which does actually make a difference if they get it. But as Barbara says I mean it's a big hurdle and of course there's an ingrained reluctance for the primary care trusts to approve continuing care because of the enormous cost it is to them when they are so strapped for cash in other ways. ROBINSON For those who don't know that is care which continues free on the basis that if you wanted to be you could be in hospital, your care needs are so grave that you are entitled to NHS care and so that comes free. WILKINSON Yeah and I think Barbara made a very persuasive argument earlier in this programme for that to be the case, I think for this particular disease. And as someone else said earlier as well if it were cancer there'd be no quibble. ROBINSON Barbara Pointon, I know now that you sometimes lecture people - attend lectures, I mean, and give advice to people who are caring, what is the message that you would like to impart for someone who's struggling to get any help? POINTON I think it is - go to the Alzheimer's Society, they are wonderful in terms of support and will help you. And my other bit of advice is don't take no for an answer, it's very exhausting but in the end - I mean I've lost count of the number of battles I've had with officialdom but in the end we've got quality care for Malcolm that's right. It's tailored me for him, person centred care, has got continuity of personnel and that's the important thing too because people with dementia are very, very frightened inside and they need to feel secure. So any care that we organise for them must be on the grounds that it makes them feel as secure as they can be. ROBINSON Dr Wilkinson, what is happening to those people whose families are not articulate and confident and persistent? WILKINSON Well they go to the end of the queue I'm afraid don't they, this is the nature of the services at the moment, that because we are so pressured that it's only those who have the immense strength of someone like Barbara to actually make a continued and persistent fuss who really get the services they require. And I think it's a real shame that we're not being able to routinely offer - the same with the drug treatments, I think the reason we're not offering them is because there are so many people who would be eligible and it's an irony really that because there are so many people we're actually offering less good care. ROBINSON Well thanks both for the moment. We're coming on now to this whole business of drugs for people with dementia and the fear the prescription will no longer continue. There are four types of drugs and they cost about £2.50 a day, they don't work for everyone but for some people they can delay and even reverse the symptoms of dementia for maybe up to three years. NICE - the National Institute for Health and Clinical Excellence - is currently reviewing these drugs. It gave an interim ruling that the drugs should be withdrawn for new patients on the grounds that they're not cost effective. NICE will be meeting again next month. ATKINSON Well during out series we heard from Professor Clive Holmes, an old age psychiatrist, who gave evidence to NICE and from Lillian and Keith Turner - Keith is taking the dementia drug Aricept for his Alzheimer's Disease. KEITH TURNER I used to say to Lillian - I'm just going to nip up to the loo - and I'd come back down again and she'd say to me - Have you been? And I'd say - Been where? LILLIAN TURNER It was like having a baby again and a toddler. But with a child their memory improves, with him it was going backwards. KEITH TURNER Aricept gave me back my memory. Now I can go out by myself, I don't wander, I can read a book and I can remember most of what I've read. It's been a whole change of world, my life has been given back to me. HOLMES As a body the Royal College of Psychiatrists is quite clear in their own minds that these drugs have a benefit clinically and we all say that with a single voice. It will be absolutely devastating for us, both as a clinical service and for research in this country, it's the only treatment we have for these patients, you have to remember that. The treatments are modest but it is something. I think for some reason beyond the age of 65 our value in society is less. I can only say that I think if this was a disease which affected younger people this decision wouldn't have happened, I can't see how logically people would say no you can't have these drugs. ATKINSON Psychiatrist Clive Holmes and before that Keith and Lillian Turner. Well the previous Health Secretary John Reid wrote to NICE earlier in the year and raised a number of questions about their interim report. So does the care services minister Liam Byrne agree that NICE needs to think again? BYRNE Well the instructions that we've given NICE in order for them to take this review have been very clear and like many people in this country I await their recommendations with enormous interest. ATKINSON What do you say to people who say this comes done to ageism? BYRNE What I'd say is that we've taken enormous steps to tackle ageism in the National Health Service and when you look at the treatment that older people now have access to we have made tremendous progress in routing ageism out of the health service. We've asked NICE to do a job and like everybody else I really look forward to hearing what their recommendations are. ATKINSON When would you though start treating dementia as a healthcare priority because the cost of Alzheimer's Disease in this country is more than stroke, heart disease and cancer put together and yet the amount of research, for example, is only 10% of what we spend on heart disease? BYRNE Our first priority when we came into office in 1997 was to tackle the big killer diseases of heart disease and cancer and we've made tremendous progress, the death rate for coronary heart disease is now down nearly a third, the death rate from cancer is now down 12%. And now we have an NHS that is much stronger we're able to spend money on a much wider range of things and that includes Alzheimer's. You're absolutely right to talk about the cost of Alzheimer's to the country and you're absolutely right to talk about historic levels of investment in research and development but that's precisely why we're directing around about another £20 million into research into dementia and neuro-degenerative diseases so that we've got the science base in order to deliver better care and treatment in the future. ATKINSON The biggest risk factor for dementia is age and with the population ageing this is going to get worse not better. People need to be convinced that you're actually realistically on the ground going to do something that is going to help their mother or father with dementia. BYRNE Well I mean what is important is that as we increase life expectancy we ensure that disability free life expectancy increases at the same pace and that is exactly why the well funded National Health Service is so important to the country. Now over the next couple of years we're increasing investment in the National Health Service up to about £90 billion, that is the most money that we've ever invested in our National Health Service. And I would say this it's essential that we have a well funded health service because we are an ageing country and if we are to age actively and positively then we've got to make sure that health services are good and that we're putting money into prevention and public health and that's exactly what we plan to do over the next two years. We are producing in the new year a white paper on social care and primary care, care that is not just round the corner but round the clock, and that is extremely important because it's about how we provide much stronger healthcare and social care closer to home, easy for people to access when they need it. ATKINSON And you have this service development guide for older people's mental health, Everybody's Business, it's called, it came out a couple of weeks ago. Can you reassure people that money is going to be put alongside that so that you can actually implement the recommendations, rather than just sort of publishing it and letting it go? BYRNE What we're doing is making sure that the local NHS is very clear about what we expect of them, we're not making empty promises but we're backing those promises with absolutely record investment. It's not for me to sit here in Whitehall and write a blueprint for the way health services are delivered in different parts of the country, the needs of Cumbria are very different to the needs of Kensington and Chelsea. So it must be for local communities to decide how they prioritise health service spending in their local areas. But what we're doing is making sure that people are very clear about what good practice needs to look like but we're also making sure that people have got the resources to invest in making those new services a reality. ROBINSON The care services minister Liam Byrne. And Dr David Wilkinson and Barbara Pointon, just time to get your response to what he had to say. His overall message, very strongly, is that things will improve for people with dementia and their families, even if it improves slowly, are you convinced Barbara Pointon? POINTON No I'm not. I would have liked something along the lines of that as now dementia is the second killer behind coronary disease and ahead of now cancer would it be reasonable to expect an investment in dementia education and services across the whole range from diagnosis to death and palliative care in dementia is a blank canvas, so that those services become on a par with services now that we can see for coronary disease and cancer within say a timeframe of five years, I would have loved to see that sort of promise. At the moment I think it's all words, words, words. ROBINSON Dr Wilkinson? WILKINSON I echo what Barbara said really. I think that it's encouraging to hear him say that things will improve but of course he's talking about the NHS generally and healthcare generally rather than dementia care. And I think there is still a very all pervasive assumption that treating older adults with mental illness is ineffective and a waste of healthcare resources in this country. And for all he says about rooting out age discrimination if you were to - the patient's experience is very different and the experience of elderly mentally ill patients who are admitted to general hospitals, for example, is one of neglect, not one of care. And I think that we need to address that very carefully. And the other thing is, as Barbara says, it needs to be a healthcare priority because it's such a common condition and it's going to be such a big issue in the next 20 to 50 years and delaying the onset of symptoms of dementia by five years would cut the number of people with dementia in this country by half. And that's a very powerful argument for early treatment and early identification and a real incentive for the government to be funding research into the effects of early identification and treating risk factors. And it really goes against the NICE view which is that we should only treat those patients with more severe problems because you get the most benefits there. ROBINSON Dr David Wilkinson and Barbara Pointon, thank you both very much for taking part in this programme, which as I said at the start is the final programme in what has been a month long series on dementia. ATKINSON And if indeed you missed anything in our dementia series or you want to know more please go to our website where you can listen to any item again. Back to the Transcripts homepage Back to the You and Yours homepage The BBC is not responsible for external websites

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