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Programme 1. - Alzheimer's Disease
RADIO 4
THURSDAY 02/08/07 1500-1530
PRESENTER:
BARBARA MYERS
CONTRIBUTORS:
CLIVE BALLARD
PRODUCER:
SARAH ROOME
NOT CHECKED AS BROADCAST
MYERS
Hello.Ìý Exactly one hundred yearsÌýago a German pathologist examined the brain of a woman who had died with dementia, what he described was a disease subsequently named after him. Alzheimer's Disease causes changes in the structure and the chemistry of the brain, it affects at least 350,000 people in this country and their families; all of whom live with uncertainty and loss. And though there are drugs which can moderate the symptoms there's a big debate going on right now about the best time to start them and to stop them.
If you want to know about drug treatments or about prevention or perhaps about research leading to a cure you can put your questions directly to our medical expert today, he's Clive Ballard, he's professor of age related disorders at the Institute of Psychiatry, he's also director of research at the Alzheimer's Society and very welcome.
Our first caller is on the line, she's Anna, she's calling from near Dartford. Anna, your question please for our expert on Alzheimer's Disease.
ANNA
Yes, good afternoon. My question really is about this issue of early diagnosis. We hear that if caught early enough there are certain drugs that can give significant advantages to the slowing down of the process of the disease but the question is how do you actually determine what is the first stages of Alzheimer's itself and what might just be general memory lapses due to normal ageing processes?
MYERS
Am I right that you're asking this question in relation to your mum?
ANNA
Yes it is, that's right. She's 83 and we have noticed and she has noticed, and it causes her some distress, that her short-term memory is significantly impaired now and it is causing her, as I say, distress and confusion. And I don't know whether there are certain things - DIY diagnosis sounds a bit dramatic - but that we can do ourselves without giving her the stress or anxiety of taking her to the doctor which would alert her to our concerns and potentially waste a doctor's time if there's something we can perhaps check up ourselves, I don't know.
MYERS
Anna, that's quite a dilemma. Is this a dilemma you come across Clive Ballard?
BALLARD
Good afternoon Anna. Yes I think it's a very important dilemma and I think it's actually important to get this tested out properly and I don't think any doctor would see that as a waste of their time at all. You raised the important question of early treatment and with any effective treatment I think the earlier you give it the more likely it is to benefit somebody over the course of a problem. But I think also it's important that there are a lot of other things that can be sorted out, that often people will have anxiety or depression as part of Alzheimer's Disease which can be treated and there are also very many issues related to planning of things in the future that people can take a more active role in if they have a diagnosis at an early stage. But I would also emphasise there are many, many things that can cause some problems with memory without it being Alzheimer's Disease, again depression or stress can do that, a lot of older people have some relatively focus problem with memory but it doesn't affect other aspects of thinking or their brain function. So it's important to diagnose it properly.
MYERS
Is there any question of doing tests online, you occasionally see websites offering to test your memory for you, would that be relevant in any way?
BALLARD
There are tests that people can do online but I think a far better way of doing it is to actually go and see your doctor. I mean usually what would happen at those type of appointments would be a mixture of taking a little bit of a history of exactly how bad the problems are, getting a full account of that, that's probably the most useful thing in making a diagnosis along with looking at other factors that might be contributing or causing. But also there are very simple paper and pencil tests of memory and related functions which probably are as good as an initial screen as anything on line.
ANNA
My concern is that I think Alzheimer's is almost like the big A that the big C has been and you wave that in front of somebody who's already a bit concerned and say come along mum let's toddle down to the doctor and see what he says and I wouldn't know how to do that.
MYERS
It's about facing up to things or the possibility that there's something wrong and I can certainly imagine that that's something you wouldn't want to put your mother through.
ANNA
Unnecessarily, no.
BALLARD
I think it's a - I think that's a very important issue and I think you raise a very, very good parallel. And in a way I think we're in the position now with Alzheimer's disease that perhaps we were in the '50s with cancer and the same sort of fears exist. And I think what's been established in cancer is that it is better - although it's difficult and anxiety provoking and stressful - it is actually better to confront them and then openly deal with any issues that might arise. And I think there are considerable potential benefits from doing that. I think the other thing that I would say is again probably similar to cancer that often people are aware of these things themselves to a degree and you can sometimes get into a situation where the person with the problem is trying not to upset anyone else ...
ANNA
And might be relieved to be more open about it perhaps.
BALLARD
Yes, yes.
MYERS
Would it start with the discussion as to whether your mother would be prepared to have her memory checked out?
ANNA
I think I would have to start that way, my difficulty also of course is I live quite a long way from her, so it isn't something I can readily do, it's something I've got to strategically think to as to how best to handle it.
MYERS
Well thanks for raising the question, I think it will have helped other people start to think about, it will be relevant, I imagine, to a lot of people, maybe someone's got an answer that worked well for them and would like to tell us about it. But we will go to another caller now who's in London, Alan Jones, who's concerned about the family link or possible link with Alzheimer's, what's your actual concern Alan?
JONES
Hello, good afternoon. Well basically my father is 78 and I would say he was in his - the early to middle stages, I suspect it may be the middle stages of the illness. And I was wondering if there's any hereditary factors connected with Alzheimer's?
MYERS
Has he been diagnosed by the way or is this an assumption you're making?
JONES
No, he's under the memory clinic and he's being treated with medication.
MYERS
And so you're wondering whether this is something that puts you and your family at higher risk?
JONES
Of course and also the sort of addendum to that is, is there any anticipation, especially with stem cell research that's going on, that by the time I reach his age - I'm 51 now - that there may be some form of cure?
MYERS
Well fingers crossed.
JONES
Absolutely but I was just wondering what the state of play was with the stem cell research.
MYERS
Well you're asking exactly the right man - Professor Ballard has a sort of handle on research for the Alzheimer's Society as well as working with Alzheimer's patients. So answers to that question: Is it hereditary?
BALLARD
There are a number of genes which can cause Alzheimer's Disease, these are very rare genes, so of the people that have Alzheimer's Disease in the UK there'd only be a very, very small number of families that had these inherited genes and in those families there'd be multiple people affected in multiple generations of the family and usually the Alzheimer's Disease would have a very early onset. So those families have taught us an awful lot about the way the disease develops and some of the factors that are important but it's actually a very, very small number of people. There are other things, other genes and other environmental factors, that kind of add to the risk and there is a very small excess risk if somebody has a close family member affected but that risk is only about 1.2, 1.3 times the usual risk. So if you kind of think about it the risks for all of us are very high if we live to - past 80 one in five of us will develop Alzheimer's Disease. So in that kind of context a 1.2 times increased risk is actually a very small increase, so I wouldn't particularly worry about it from the point of view of it being inherited in that situation. But I think it's an important issue for all of us to think about because we're all at fairly high risk.
MYERS
Before we go on to tackle the research issues I just wanted to read an e-mail for Tom - from Tom, who's asking: Is there an upper age limit for the onset of dementia? He's reached 76 without any symptoms - am I safe - he says. From what you've said not necessarily.
BALLARD
No the number of people increase substantially with increasing age, so it's one in five people over the age of 80, one in three people over the age of 90. There's a lot of debate about whether the risk does tail off a little bit in extreme old age, for example there are one or two people who've been carefully tested who have lived past 110 and don't have Alzheimer's Disease. But certainly until that sort of stage of life the risk does seem to increase progressively.
MYERS
And can research tell us anything about why it is so strongly age related, while it's obviously less strongly inherited, clearly you've talked about the increasing incidence with age?
BALLARD
I think a lot of it isn't age itself, it's the processes that change with age. For example, the blood supply to the brain and the way the brain repairs itself over time, the accumulative damages that occur to the brain which then affect some of the proteins and things that get deposited in the brain when people develop Alzheimer's Disease and lead to the plaques and tangles that Alzheimer - the pathologist you mentioned - described.
MYERS
And taking Alan's question a bit further than about research, is there any research that's going to lead to a cure before Alan reaches the age of his dad?
BALLARD
I mean I would certainly hope so, I think in the last 20 years there have been absolutely enormous advantages in our understanding of the biology of Alzheimer's Disease and that's allowed us to create some very good targets to try and develop treatments to look at, now whether that's drug treatments or things like stem cell treatments. And there are in fact some promising drug treatments and a vaccine in clinical trials at the moment, which might prove to be more effective treatments than those currently available. I do think though that again if we go back to the parallel between Alzheimer's Disease and cancer the reason that there have been so many new treatments in cancer is partly understanding the biology but partly the investment in taking that biology through to clinical treatments. And at the moment in the UK we only actually spend 15 pence per person in the population on Alzheimer research in the UK, it's a tiny, tiny amount. And I think if we actually want these treatments to come through a bit quicker then there needs to be more public investment in that type of work.
MYERS
Let me move you on to an e-mail from John and he's I think, rather like Alan, who's just been on the phone, is concerned because there's a history of Alzheimer's in the family. He's 53 and he says that he's having problems remembering the names of his grandchildren and I think particularly concerning that occasionally he meets people and he seems to sort of disappear. He says: When I came back the person I was talking to said that the personality had completely disappeared from my face as if someone had emptied me. So it's memory and somehow an absence, a personality problem. Is this something he should be worried about or would there be other reasons why he could be experiencing these rather strange feelings?
BALLARD
Well I think that's a very important question and it's very important that people don't assume if they do apparently have some memory difficulties or some other things that it's automatically related to Alzheimer's Disease. Certainly depression or stress can cause very, very similar problems with memory and concentration but also can affect temporarily people's personality and the way they think about things. So I think it's always important to have it assessed properly and to get a proper full diagnosis.
MYERS
And that's the answer then to his further point: Is there any value in going to the doctor as the inevitable will surely take its course? Which does seem quite defeatist really.
BALLARD
Well I think - I can understand the concerns in the context of having a very strong family history although - of Alzheimer's Disease - but as I said unless it's actually been established that it's one of these rare genes there's a strong likelihood that it isn't and it certainly - even if that was the case - it's certainly not inevitable that at this particular point in life that's the cause of the current difficulty. So it's certainly very important to get it checked out.
MYERS
John, if you're listening I hope you find that a helpful answer. We'll go to the lines again and to Ray who's phoning from Merseyside in connection with his wife who has Alzheimer's and has mood swings - I think that's one way of putting it - tell us a bit more Ray.
RAY
Yes good afternoon. My wife is about three years into Alzheimer's, two since she had a firm diagnosis and the early year when I think her memory problem was increasing but sadly we were in denial about it. We've lived here in our home for 46 years but now my wife believes suddenly that she has a separate home somewhere else and is simply here on brief visits. Every day we reach a point where she insists on going to her 'real home' in brackets. She puts a small overnight bag with an assortment of clothing beside the front door and in the past I've driven her around the district and eventually returned to this house and she's been quite happy to come in and the episode was over. But lately this strategy has stopped working, each day at varying times she wants to go back home, as it were, alone and on foot. Each of these episodes invariably leads to heightened aggravation and a lot of stress for both of us but I think I ought to know better but don't and her state is such that I couldn't possibly let her leave the house in safety. I've had wonderful help from the local healthcare service and from the Alzheimer's Society but this one seems insurmountable. So given that this has gone on for so long I'm anxious to know if it's a phase that might pass.
MYERS
Distressing for everyone concerned, Clive what would you advise?
BALLARD
Well I think these kind of symptoms are very distressing for everybody and I think one of the important things that you highlight is that although when people think about Alzheimer's Disease they think about memory but actually a lot of things that cause practical difficulties and distress are these other types of symptoms that aren't directly related to memory but cause a lot of difficulty. It sounds, in the first instance, as if the strategy you were using was a very sensible strategy, that often if you take people out of the house for a walk or a drive in the car people will return happily in those sort of circumstances. I think if that has now stopped working it might require a slightly more careful assessment from a psychologist or a community nurse with some experience in these type of issues to perhaps help try and refine the plan a little bit and develop the strategy further and that often will help. Every individual is different but for most individuals these symptoms don't persist throughout the course of an illness and certainly in about half of people they resolve in a period of less than a year. For some people they can last longer. So it's certainly not inevitable that it'll persist.
MYERS
So this agitation and confusion is well known and understood as part of the development of the disease and a phase within it is it?
BALLARD
I think it's certainly - it more commonly occurs in the moderate stages of Alzheimer's Disease, although it can occur at other periods as well. But it often does change over time, either with other changes in people's thinking functioning or the progress of the disease.
MYERS
Ray, thank you very much for raising that question and eliciting that answer and I hope that's helpful to other people. It's not - it isn't really a matter then of humouring the person, it's a way of coping isn't it and not resisting and being aggressive, it must be quite difficult, it tries everyone's patience of course when people want to do something that it's risky for them to do - go out and about.
BALLARD
I think it's extremely challenging and I think the skill which is a very difficult skill is to avoid being too confrontational with somebody which obviously upsets the person but is also upsetting for everybody involved in the situation but also not to reinforce a false idea, so to kind of distract or find another solution, find another activity or go for a walk or do something else which takes the person's mind off their dilemma. And I think as - Ray also made a very, very good point that everyone is only human and occasionally these situations are very, very stressful for the person who's caring for someone with Alzheimer's Disease as well and however caring somebody is occasionally it's normal to become frustrated in those situations.
MYERS
Let's go to Marilyn, she's waiting to speak to us, she's in Oxford and wants to talk about medication. What's your question Marilyn?
MARILYN
Oh hello. I have a friend who's some way down the Alzheimer's trail, who's been prescribed a drug which - I think it's called Aricept, but I'm not quite sure. She's not very good at remembering to take it, she lives on her own and to our astonishment the blister pack in which it's prescribed has the day of the week written either in Italian or French.
MYERS
In Italian or French - not very helpful.
MARILYN
Which is a very good way of confusing an already confused person.
MYERS
Well there must be a reason for that, it does suggest that the drugs are coming from another country, why would that be the case?
BALLARD
Yes I think there's a simple explanation although it's not always helpful but these class of drugs are often a little cheaper to buy from other European countries so pharmacies often purchase them from abroad.
MYERS
It's just as simple as that. Can I tie that in - and stay on the line if you will Marilyn - but we've had a question from Ruth who wants to know why the NHS won't give out Aricept, she mentions that particular drug, and she says it's outrageous that they won't actually hand them out to people who might benefit from them. Now we know there is quite a debate going on - perhaps you can just give us the outline of that and what's the story here.
BALLARD
Well they're part of - Aricept's one drug of a class of drugs called cholinesterase inhibitors, there's two other drugs, one called Reminyl and one called Exelon that are also part of that class. And these are licensed for the treatment of people with mild to moderate Alzheimer's Disease and everyone agrees that they're clinically effective for people in those stages of Alzheimer's Disease. They're not a cure, they're not a miracle but they do give modest benefits and the type of improvements people get are equivalent to what would normally be expected to decline over about six months, if you like the bottom line is they're buying people six months of improved function, improved memory. Now whilst that's not a miracle if I had early Alzheimer's Disease I think that would be very worth achieving. So that everyone I think agrees that they're clinically effective treatments, the debate is whether they're cost effective - so do they give cost effectiveness in the modern NHS and that's what the NICE - the National Institute of Clinical Excellence - have been considering. And they've decided so far that they're only cost effective in people with moderate Alzheimer's Disease and therefore shouldn't be available to people with mild Alzheimer's Disease.
MYERS
And that's the decision that might be overturned by the high court?
BALLARD
Indeed the Alzheimer's Society and some of the pharmaceutical companies did take forward a court action for a judicial review and the decision is expected next week.
MYERS
We're not talking about a great deal of money but I suppose we are when you consider the number of people who might be given these drugs over a length of time.
BALLARD
Well I think one of the really baffling things about it is that - the way the cost effectiveness was calculated, it failed to account for an awful lot of the real costs that are experienced, including the costs of the carer time that are actually essential in supporting people with Alzheimer's Disease. So I think if it was evaluated properly these treatments are very, very cost effective. But also it concerns me considerably that we're coming to a point when we're dealing with the most vulnerable members of society and we're refusing them, what everyone agrees is a clinically effective treatment at a cost of £2.50 a day.
MYERS
Point well made. Let's go to Joanna, she's in London, and I believe the mother-in-law's recently been diagnosed with Alzheimer's - Joanna?
JOANNA
Yes, yes hello.
MYERS
Bit of a shock?
JOANNA
Yes, well it wasn't a shock at all, no, we were actually expecting it. She's only 67 and for a good few years she's been showing symptoms of it, so it wasn't unexpected. Now she's only 67, I remember several years ago her saying I'm quite worried I'm going the same way as my mother and I've got a feeling she also mentioned other relatives that she was concerned - she kept saying I'm worried my mind's going, I'm going the same way as my mother. So - and being so young I'm also quite concerned if it genetic, even though I know that's rare from my reading up, I am concerned of the genetic link. So is there anything that my husband or his sisters could be doing to help prevent, anything in their lifestyle that they could be changing or any foods they could be eating, anything that could actually sort of help prevent it in the future?
BALLARD
I think that generally everyone in the population can do something to reduce their risk and a healthy lifestyle does reduce the risk of Alzheimer's Disease - a healthy diet, lots of antioxidants, that would be things like vitamin C that are in orange juice or fruits or vegetables, regular exercise, being of normal weight or certainly not being overweight, a lifestyle which kind of incorporates those things. I mean it's not - it doesn't guarantee people won't develop Alzheimer's Disease but it does reduce their chances probably by as much as 20 or 25%. So you can - I mean somebody could be unlucky and be very, very healthy and develop Alzheimer's Disease but I think with these things it's always good to play the odds and you can sort of weigh the odds in your favour.
JOANNA
So it is generally just a matter of a healthy lifestyle but also in particular vitamin C?
MYERS
Which should ward off all sorts of other complaints. Can I raise a question that has come to us on e-mail? And it's about simple exercises, do they help perhaps to prevent Alzheimer's or if you've got Alzheimer's will they help retain what memory you've got?
BALLARD
Well I think this is a very topical issue where the types of brain training can actually help people either, as you said, prevent Alzheimer's Disease, delay it or improve it. I think whilst it's a very exciting idea there's actually very, very little evidence at the moment. Certainly we wouldn't discourage people from doing it if they find it enjoyable, although they shouldn't carry on doing it if it's a real chore. But I think it's a very important question for further research to see whether this really does help.
MYERS
Thank you very much. And I'd like to finish with a tip from Jill who says: Take advantage of all quality offers of help and support. Not just for the person with Alzheimer but for yourself too. Very well made point. That's all we have time for I'm afraid today. Thanks to Professor Clive Ballard. Thanks for your calls and your e-mails. I do hope we have been able to give you some of the information you need. You can listen to the programme again on our website, you can follow the trail there to Check Up and there are links there to other resources. Or you can phone our free helpline, 0800 044 044.
And join me next week when we have advice about foot problems.
ENDS
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