| | |
| | |
 | You and Yours - Transcript BBC Radio 4 |
| |
| Print This Page |
| |
| |
| TX: 10.11.05 - Dementia: Young People with Dementia PRESENTER: 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 Three quarters of a million people have dementia in the UK and it mostly affects older people. The chances of having it increase significantly with old age. But for those who develop it young, and there are over 18,000 of them, it can present problems, particularly with diagnosis. Dr Karim Saad is a consultant old age psychiatrist at the Young Onset Dementia Service, which is part of Coventry Teaching Primary Care Trust. Dr Saad, when we talk about early onset dementia, what age group do we mean? SAAD We mean age groups of younger than the age of 65. We must remember that the original description of Alzheimer's was relating to a lady who was 51 years old. So by today's standards that was a description of someone with young onset dementia. And in fact I see patients who are in their 30s with children under the age of 10. ROBINSON And why do those young people get dementia? SAAD Well the causes of dementia in younger people appear to be the same causes affecting older people. However, there are more genetic influences on their illness and also the burden of illness is obviously very different in younger ages. About 30% of people suffer with dementia at young ages because of Alzheimer's Disease, vascular dementia and fronto-temporal dementia are also amongst probably the top three. ROBINSON So that's where there are small - is that small bleeds into the brain, vascular dementia? SAAD Yes, circulation related problems in general. Fronto- temporal dementia tends to favour the front of the brain, the front half of the brain, again due to a variety of causes and presents in a particular way where there's predominantly a personality change without necessarily being memory problems. Alcohol related dementias can form up to 10% of causes and in a way that's a preventable dementia. There are other causes: some related to Parkinson's Disease, Lewey Body dementia is one variant of that, progressive supranuclear palsy, multiple sclerosis can cause dementia, prion diseases like CJD can cause dementia and HIV has also been associated in the later stages. ROBINSON Well Chris Loveday from Northampton was diagnosed with Alzheimer's Disease a couple of years ago when he was only 51. He has two children: Daniel who's 20 and Holly who's 16. Chris goes to a day centre one day a week, it's run by his local Alzheimer's Society and he enjoys that but he spends the other days of the week at another day centre where he packs boxes and does some gardening. His wife, Marilyn, is now the sole wage earner. ACTUALITY MARILYN LOVEDAY Chris! CHRIS LOVEDAY Yes. MARILYN LOVEDAY Where are you? CHRIS LOVEDAY Here. MARILYN LOVEDAY Four years ago he worked for IBM and he was a computer engineer. For maths and remembering things he was always very good at, so it came to quite a shock when you just ask him to go down the road for a loaf of bread and come back with nothing because he'd forget what he'd gone for. CHRIS LOVEDAY I'm quite forgetful. I'd like to be able to drive again. I like using the computer. MARILYN LOVEDAY Basically if anything went wrong in the house he would always be able to repair it. He just forgot simple things like that, you know even how to put light bulb in at times. HOLLY LOVEDAY This my computer and my mum's [indistinct word]. We don't let our dad go on this because he's got his own computer downstairs which he can play around on. I am actually quite worried that he'll mess our computer up, so this is why we have separate computer, so all our important work and course work is all on here. MARILYN LOVEDAY We got to the state where he was getting very frustrated with himself and two years ago I managed to get him to the doctor and the doctor thought it was depression. Because he was made redundant his first instinct was oh he's depressed, you know he needs to get out and work and he will get over it. And we never really got an answer until we had a visit one day from a specialist who actually did a few more tests and confirmed that Chris had early onset of Alzheimer's. I was shocked, very angry, had to downsize quite dramatically to be able to cope with all the bills that come in. 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 coming home, doing my work, looking after my dad and basically going off to college and work. Not many of my friends know about my dad and I like to keep my personal life my personal life. And I just - I don't know really I just don't think they'd understand. I am upset that I can't do what all my other friends are doing and dad he forgets quite a lot of things and he gets my mum stressed, which gets me stressed and we all just get stressed and start arguing. 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 until 4.30, on Sunday I work from 10.00 till 4.00 - I work seven days a week. CHRIS LOVEDAY I'm now going to - there's a group of us, oh well I do gardening, yes. That's one of the things I do. I do a little bit of woodwork. MARILYN LOVEDAY The only thing that's going for us at the moment is that Chris is actually on Aricept, it's supposed to help with the Alzheimer's, to slow it down a bit and I have to say that it has helped him enormously because without the Aricept I don't think he'd be able to go to the day centre and pack boxes and do the gardening because he would never have remembered that he had to go every morning, although I have to remind him. CHRIS LOVEDAY You get very tired about it because you're putting thousands of things into bags and you do it for a long time. MARILYN LOVEDAY He tells me how boring his packing of his boxes are. [Laughing] CHRIS LOVEDAY It does get very boring and you get a bit fed up with it. 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. So that's a worry when I'm working in the evening because the nights are getting darker now. 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 were we coping and one thing and another - and unfortunately at the moment I suppose because we are coping as a family that they've just left us alone. We can't claim incapacity benefits 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 stamp. Two hundred pounds a month, that's all we get at the moment from Disability Living. HOLLY LOVEDAY I think there should be more help. I think there should be more money so my mum can actually stay at home and help the rest of us look after my dad and we can all have a break once in a while. Just basically we hardly ever see her apart from when she comes home late at night. ACTUALITY MARILYN LOVEDAY Holly, can you get the knives and forks and everything out? Chris, do you want to come and get your drink? HOLLY LOVEDAY One day he probably won't remember who I am. ACTUALITY MARILY LOVEDAY Chris? CHRIS LOVEDAY Yeah alright. HOLLY LOVEDAY And that does actually scare me. MARILYN LOVEDAY And I do think how I'm going to cope, at the moment I suppose I'll just have to take each day as it comes. ROBINSON The Loveday family from Northampton. They live within the area run by the Northampton Primary Care Trust and the trust have told us that their case illustrates a gap in their services which they are planning to fill. Dr Karim Saad, who's a consultant psychiatrist specialising on early onset dementia, is still with us. The experience of the Lovedays, who've been left without really any support, we've had a number of e-mails from listeners with very similar problems, how common an experience is that? SAAD Unfortunately that experience is extremely common, all around the country where there are no specialist services for young onset dementia. And in fact this isn't a new problem, throughout the '90s there have been surveys after surveys coming in describing a particular pattern of very similar experiences. If I just give you a flavour of these. The commonest tends to be delays in diagnosis both in primary care and in secondary care or even the diagnosis is not very accurate. People have been passed from pillar to post, between Health and Social Services. There needs to be access to services like genetic counselling and that can be quite difficult. People can receive poor financial advice or advice about employment, getting the right benefits, getting the right retirement packages. Very little or poor community support from services. And then difficulties with accessing appropriate services like day care, residential care and inpatient care. ROBINSON Dr Saad, there's slight interference on the line but we're trying to do what we can about it. Could you tell me, briefly, if you would - what services do younger people with dementia need that are different to what is on offer to older people? SAAD Because the diagnosis can be very difficult people need access to very quick and very accurate diagnosis from the start. People need very clear care pathways with one point of entry where people would know this is a telephone number or a contact that we can access straightaway and it would get us through to the specialist services. Once a diagnosis is made people need to be aware of a plan from the point of inception into the service till the stages of continuing care later on. ROBINSON Dr Karim Saad, we'll have to leave it there, thank you very much. And tomorrow we're going to be hearing from the writer and broadcaster Joan Bakewell on how dementia has been portrayed in books, on television and in films. Back to the You and Yours homepage The BBC is not responsible for external websites |
| About the BBC | Help | Terms of Use | Privacy & Cookies Policy |
