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BRITISH BROADCASTING CORPORATION
RADIO SCIENCE UNIT
CASE NOTES
Programme no. 6 - Alzheimer's Disease
RADIO 4
TUESDAY 09/10/07 2100-2130
PRESENTER:
MARK PORTER
REPORTER: ANNA LACEY
CONTRIBUTORS:
ROY JONES
DENISE LINTERN
CLIVE BALLARD
BRUCE BOVILL
FRANCESCA CORDERO
PRODUCER:
NOT CHECKED AS BROADCASTbr />
PORTER
We all worry about the prospect of failing health as we age, but dementia or "losing your marbles" holds a particular dread. Dementia is disabling, distressing, progressive and incurable. And it's extremely common. There are currently around 700,000 people with dementia in the UK - most of whom have Alzheimer's disease, named after the German neurologist who described the characteristic brain changes a hundred years ago.
In today's programme I'll be discovering what it's like caring for a loved one with Alzheimer's.
CLIP
She can't walk, she can't talk, she can't see, she can't crawl anymore now. I know love, I know. But she's so strong, and there's no way of knowing how long it will go on for so her life is constrained and of course I'm put on a constant state of not knowing where I am.
PORTER
I'll also be talking to the doctor behind new research linking the common eye condition glaucoma to Alzheimer's. And asking what the implications are for people with either problem.
And I'll be getting an update on what's available on the NHS for treating Alzheimer's disease, and finding out about newer approaches still in the pipeline.
My guest today is Dr Roy Jones - he's from RICE - the research institute for the care of older people in Bath.
Roy, presumably it's inevitable that we lose some brain power as we get older and the longer we live the more of a problem that's likely to be.
JONES
To some degree that's true. In fact our memory actually starts changing much younger, I mean we actually can detect changes in certain tests, for example, of people in their 20s and 30s. But wisdom, for example, is one of the things that can in theory grow as we get older, so it's not necessarily all bad. And I think the other thing is it is important to make the difference that dementia and Alzheimer's disease is something that's different from normal ageing - it's a progression beyond that.
PORTER
Alzheimer's may be the most common form of dementia, but of course it's not the only form?
JONES
Absolutely, there are many other types which often tend to get overlooked because there's been so much emphasis on Alzheimer's disease and because Alzheimer's is by and far away the commonest. The next commonest is probably vascular dementia and most patients, particularly older patients, will have some degree of vascular changes in the brain as well as Alzheimer's changes.
PORTER
And that's basically the sort of furring up that happens to the brain's blood supply that you get with your heart as well?
JONES
Absolutely and also things like tiny strokes can happen, if you've had a major stroke, for example, that can affect memory areas. So there are a number of reasons why vascular problems can cause a difficulty.
PORTER
What differentiates Alzheimer's from some of the other more common forms of dementia?
JONES
If we actually look at the brain after someone's died from Alzheimer's disease what we see that are the particular characteristics that actually Alzheimer himself described a hundred years ago are two things mainly. One are called plaques, which are deposits which we now know contain a protein amyloid, which are outside the cells and then inside the nerve cells there are dying nerve cells which contain tangles which is another type of protein and they're the things that you see particularly in certain areas of the brain in someone dying from Alzheimer's disease. You wouldn't see those in the same way or the same degree in other types of dementia. But the actual way we have to do it of course is we don't see that with people, we actually have to deal with it from how we see the person presenting in front of us.
PORTER
So what would make you think Alzheimer's as opposed to vascular dementia when you're faced with a patient, what's the classic story?
JONES
The classic story of Alzheimer's is the kind of thing that you've mentioned about exaggeration of ageing if you like, in that someone will notice that there are problems with their memory, they're forgetting names, they may start ...
PORTER
And they're noticing this themselves?
JONES
Yes they will notice it themselves, very often they will notice the first problems and then later other people notice it and to some degree it is a bit more serious if other people are noticing these memory problems. If people start forgetting the names of familiar people - loved ones, grandchildren or whatever - that may be an issue. If people start to lose their way, for example it's common perhaps to get a little lost when we're outside the house but if, for example, people start to get a bit muddled in a house they've lived in for a long time. So a little bit confused. And then judgement is another element of it, what we call executive function, which is the ability to multi-task, the ability to cook complex things like a Sunday lunch, driving may be an issue because of the complex skills that that involves. And these things build up to a picture that then suggests to us that this looks like Alzheimer's disease. And the other characteristic is that this is usually a gradual progression and it starts gradually, it's not a sudden start, whereas vascular dementia, for example, might start with a small stroke or a mini stroke or something like that. So it's that pattern. And gradually as we follow it and we see the changes on testing as well - that's another side that helps us - when we test people's memory we're looking at something called episodic memory - what you do in everyday life, why you go into a room, you went in to make a cup of tea rather than a cup of coffee - and we start to test the pattern of the problems across the thinking processes - it's not just memory. And that pattern will sometimes help us decide that it's more likely to be Alzheimer's disease than one of the other hundred causes, there's probably as many as a hundred causes of dementia overall.
PORTER
Of course it's not just the person with Alzheimer's whose life is disrupted by the illness - the disease has a profound effect on those around the patient too, particularly their partner or spouse.
Most people with dementia are cared for at home. Our reporter, Anna Lacey, went to meet Denise Lintern who has been looking after he husband Stan since he was diagnosed with Alzheimer's 12 years ago.
LINTERN
He was 52 when he was first diagnosed with Alzheimer's, which is quite young, and he started losing things and that was sort of like the first indication that we had. And slowly over the years gradually things have decreased. I mean he can't speak now, he can't walk, so I do everything for him now - feed him and things - but you know he's still here.
LACEY
But what made you decide to care for Stan at home?
LINTERN
Well initially Stan asked what Alzheimer's was - whether he was going to die from it - and that's not the case and then he just looked and he said you know you'll always look after me won't you - and who can refuse really, something like that. So - and I feel fine, I've got a good set up here now, over the years as changes happen you have to get different equipment and more support but we're fine.
LACEY
You say about some of the different equipment - you have actually made some modifications to your home, do you mind actually just showing me around and let us having a look at them?
LINTERN
No that's fine absolutely.
LACEY
Okay now we're coming into the bathroom, so what have you changed in here?
LINTERN
Well it was a conventional bathroom with a bath, after that we had a shower, but even the shower step became too difficult for Stan and could be potentially dangerous. So what I have here is a flat floor shower, some people call it a wet room, and I can just sit him on to the commode and he can have a proper shower.
LACEY
We actually also have some kind of tracking on the ceiling with something hanging down that looks quite like a coat hangar actually, can you just explain what that is?
LINTERN
Yeah, it's overhead tracking which I have in the bathroom so that I can take him from the commode on to the toilet or on to the commode to have the shower. And I have one in the bedroom as well which gets him off the commode and on to the bed.
LACEY
Although you have these different modifications and they're obviously a great help what do you find are the biggest problems to try and overcome with caring for somebody at home?
LINTERN
I think incontinence is always a big problem with people and I think that can be a make or break situation and it's okay when it's a kid but when it's an adult having an accident that is the biggest thing I think that's difficult.
LACEY
And have you ever considered a care home as an option for Stan in the future or will you keep him here always?
LINTERN
As long as I'm able to he's staying at home. I'm, I suppose, I'm going to say arrogant enough to think that I'm the only one who can care for him to the best and I have plenty of time so he's staying at home with me.
PORTER
Denise Lintern talking to Anna Lacey. You are listening to Case Notes, I am Dr Mark Porter, and I am discussing Alzheimer's disease with my guest Dr Roy Jones.
Roy, Denise's husband, Stan, was only 52 when he was diagnosed - that's unusual in that Alzheimer's usually strikes later doesn't it.
JONES
Yes it does but it unfortunately does affect younger people. Something like 2% of people with dementia are under 65 and we often forget about them, we tend to think of dementia as a problem only of older people. And because of that, although the problems she described were very typical and could have been of someone older there is a bigger challenge because there are so few people spread across the country having the right resources and facilities is actually quite difficult. Alzheimer's is the commonest type of dementia whatever your age, but there are other types of dementia, one particular one which we call frontal temporal dementia, which tends to affect behaviour more or sometimes language and knowledge and there are different types of that, that's one of the commoner ones in younger people. But as I say Alzheimer's is still the commonest.
PORTER
And briefly he's had Alzheimer's for 12 years, a lot of people think it's quite a quick disease but it's often not.
JONES
No, obviously if we diagnose it earlier the extent of the disease tends to last longer, maybe the problems showing up in someone younger mean you might pick up on it and act on it sooner. But actually if you look at the books and the studies it's something like - this can be from 6 to 20 years is the duration, so it can be quite a long process.
PORTER
Thank you Roy. I want to come back to who gets Alzheimer's and why a little later. But first a look at the treatments available on the NHS. The National Institute for Health and Clinical Excellence - NICE - has approved three drugs. The anticholinesterase inhibitors - Aricept, Exelon and Reminyl. Professor Clive Ballard is Director of Research at the Alzheimer's Society.
BALLARD
When people's nerve cells start dying in the brain then there's a loss of some of the chemical messengers as well and one of the main messengers is something called acetylcholine and all these drugs basically kick start that chemical messenger.
PORTER
So they're boosting levels of that chemical?
BALLARD
Yeah they boost levels of that chemical and they help - if you like they kick the nerve cells that are still there harder to work harder.
PORTER
So they're enhancing remaining brain activity rather than actually doing anything about the underlying cause of the Alzheimer's itself?
BALLARD
Predominantly although there's a little bit of evidence that they might be stopping some of the plaques that develop in the brain in Alzheimer's disease as well.
PORTER
And what sort of clinical effect do they have, I mean what do you notice as a relative or a clinician looking after someone who's on them?
BALLARD
Well I think the evidence and what people notice might be slightly different because they've been looked at in about 30 clinical trials, mainly over six months. And in those trials what they mainly do is maintain memory, the higher brain functions, people's activities over about a six month period and then that effect starts to wear off a bit probably. So if you like the bottom line is that they're probably buying people six months of maintained function.
PORTER
So they're not actually - they're not actually reversing the process but they might help to halt the decline albeit temporarily?
BALLARD
Yeah the people have a little bit of initial improvement then decline but six months later, on average, somebody will be no worse than they were at the point where they started it.
PORTER
And that initial improvement in someone with mild to moderate Alzheimer's might practically make what sort of difference to a carer - can we quantify them?
BALLARD
Well I think often the things that carers notice aren't necessarily - as doctors we test memory but carers never come to the doctor and say the person I'm caring for's memory is really a problem, they relate it much more to function and what people are doing. And I think the things they notice is that people are doing more for themselves, they're a bit more independent, their confidence is better, they're more able to play with their grandchildren - I mean those are the kind of practical things that people tend to tell their doctor.
PORTER
This has been a controversial area because there have been some - shall we use the word rationing of who can get these drugs - NICE have made a decision to say they're not available to everyone - what is the current situation?
BALLARD
Well these drugs are licensed for people with mild to moderate Alzheimer's disease but what NICE have decided is that they're only cost effective for people with moderate Alzheimer's disease, so that those are the only individuals who have these treatments available to them on the NHS. Although there is a little bit of a proviso to that which is that somebody's doctor's clinical opinion supersedes the guidance so a doctor can make a decision to prescribe outside that guidance.
PORTER
And forgetting cost effectiveness for a moment but just looking at purely clinical effectiveness - is there evidence that these drugs can actually improve people with - at each end of the spectrum - with the milder form of the disease and the more serious form?
BALLARD
I think the clinical benefit evidence is relatively similar for people with mild and moderate Alzheimer's disease. Probably the reason they're less cost effective is that the main measure for looking at cost effectiveness is whether you delay the time when people are going to need nursing home care and obviously as that time is going to be closer in somebody with moderate Alzheimer's disease you have more chance of delaying it.
PORTER
And to put that cost into perspective, how expensive are these drugs?
BALLARD
They're not particularly expensive, they're about £2.50 a day.
PORTER
Are there anymore exciting developments in the pipeline in terms of drugs?
BALLARD
There's some evidence about drugs that are already available and prescribed for other purposes that might have additional benefits for people with Alzheimer's disease. One of the drugs that has come to prominence recently are statins - drugs that lower cholesterol. And there's been a little bit of evidence from community studies for a while that people taking statins might be at reduced risk of developing Alzheimer's disease. But there's been a recent study from people who've donated their brains to research showing that these statin treatments also reduce the plaques and tangles that develop in the brain in Alzheimer's disease...
PORTER
So it's not just the anti-cholesterol effect - preserving the circulation to the brain - it may have a specific anti-Alzheimer's effect as well?
BALLARD
I mean it might be a matter of both but we know that the way that the protein called amyloid which are in the plaques that develop in the brain is cleared from the brain involves cholesterol, so it's a rational hypothesis that these drugs might actually help clear the plaques from the brain. Another potentially interesting drug - the tetracyclines - these are antibiotics that are widely prescribed, for example, as an acne treatment - and there's not very much evidence in humans yet but there's some evidence from fruit flies and from other animal models that these drugs actually might reduce the tangles that develop in the brain that are another key part of what happens in people with Alzheimer's disease. And I think the good thing about both statins and tetracyclines is that they're safe drugs, they're quite cheap drugs, they're already available, so they're very attractive as a potential treatment.
PORTER
Professor Clive Ballard talking to me earlier. By the way the statins he mentioned there are a hot topic at the moment and I will be revisiting them next week in a special programme on cholesterol lowering drugs.
Roy, briefly, there are other drugs that are in the pipeline at the moment, there was talk about a vaccine.
JONES
Yes there certainly was. Most of the approaches that are currently in the pipeline are to try and attack this protein amyloid and the plaques that Clive talked about. It was hoped that you could immunise people with an immunisation against the plaques and in fact that is - or against the protein that's in the plaque - and that's still a possibility. It ran into some problems where a few patients got encephalitis - inflammation of the brain - and it stopped the progress of the studies but it's still an approach that's being used.
PORTER
Okay. Earlier on Anna Lacey met Denise Lintern who had decided to look after her husband Stan at home. But that's not an option for everyone.
Jan Bovill was diagnosed with dementia 15 years ago and now lives in a care home in Basingstoke. Anna Lacey joined her husband Bruce on one of his regular visits.
BRUCE
Right we're just off to Basingstoke, which is where Jan's home is located. And I make the drive every couple of days to visit her.
LACEY
And how long does that take you to travel every time?
BRUCE
Generally speaking it takes about an hour each way. I did do a calculation once which shows that I've done 70,000 miles just driving to and from Basingstoke to visit my wife, which is a bit bizarre really and not very carbon conscious but has to be done.
We have to sign in going through the door.
Are you alright lovey? Yeah? Okay sweet, okay. Do you want to say something? It's okay, it's okay.
LACEY
At what point did you decide that it was time that Jan should be in a care home?
BRUCE
Actually the decision was taken out of my hands. The condition accelerated to the extent that I had no choice in the matter really. She came in for assessments to the hospital, she had a fall when she was there, she deteriorated and there was no other option other than for her to come into a care home.
LACEY
And how did you feel about that?
BRUCE
Awful, dreadful because I'd expected to take her home with me and care for her as long as I could. I was realistic - I knew it wouldn't be forever. But I'd already had very little help in caring for her at home for several years and I couldn't think of any way possibly I could care for her in her new condition.
LACEY
Had you ever discussed the option of a care home when she was first diagnosed with Alzheimer's?
BRUCE
No because I never let them tell her that she had Alzheimer's - it was always that she had memory problems because I feared that she wouldn't be handle the knowledge of the condition. So therefore we never ever talked about care homes at all.
LACEY
Jan's been here now since 2001 and over those years have you found any benefits for her having been here rather than at home with you?
BRUCE
Oh well she gets 24 hour care here from people who are consistently with her and are consistently refreshed. When you try and care for somebody at home you are there 24 hours a day caring for them and you're absolutely exhausted a lot - well most of the time and it's not ever going to get any better. Somebody's called it a long, slow goodbye and 15 years so far and it could be another 15 on top.
PORTER
Bruce Bovill talking to Anna Lacey.
Dr Roy Jones, are some people more at risk of developing Alzheimer's than others? One of the things I often get in practice is people with a family history of the disease - maybe mum or dad developed it later in life and they're worried that they're at risk too.
JONES
There are some family risk factors and some genetic risk factors but in general the biggest risk factor is your age. So in many families it's because they've lived to a good age, which is in itself a positive thing because something like one in five people over 80 will have something like Alzheimer's disease. So that if you've got a family of several people living to that age you're going to see more Alzheimer's in the family. Very rarely people inherit a gene which inevitably means they will get Alzheimer's disease but that's only a small proportion of the younger people who develop the disease.
PORTER
So that might present as a family history of what - someone developing it earlier?
JONES
Yes and very often the family will know about it because it is so strong but they are very limited families and as I say they're still the minority of the people under 65 developing Alzheimer's. And then there are some susceptibility factors. One gene particularly that we're aware of which does link into cholesterol and heart disease interestingly called APOE. And we know that if you inherit a particular type of that you're slightly more at risk to get it but you can still get Alzheimer's disease without it, so it's just increasing your risk slightly.
PORTER
Well, Alzheimer's has been in the headlines recently following research suggesting that the underlying degenerative process in the brain may be similar to that seen in the nerves at the back of the eye in glaucoma. A common eye condition thought to affect at least a million people across the UK - most of whom are middle aged and elderly. So what are the implications for those with either disease? Dr Francesca Cordero is a consultant at the Western Eye Hospital, and one of the team from University College London who discovered the link.
CORDERO
Glaucoma has been known for a very long time to be due to the death of nerve cells in the retina and this nerve cell death that occurs is supposed to be why people with glaucoma if left untreated do eventually go blind. Now the research that we've been looking at suggests that the mechanisms by which nerve cells die actually in glaucoma is very similar to what goes on in Alzheimer's. So in the Alzheimer's brain you've probably heard in your programme so far about things such as plaques and tangles, now the protein that makes up the plaques that has been pinpointed as being characteristic of Alzheimer's disease in the brain we've actually discovered to cause the nerve cell death in the retina in glaucoma models. And what this suggests is that the same processes that lead to nerve cell death in the brain also go on in the eye and in this case actually characterise the disease glaucoma.
PORTER
So there are two implications. Let's start first with the implications for people with glaucoma, that we've been treating this historically as a problem principally caused by high pressure in the eye and we thought that was what was doing the damage to the delicate cells at the back - the retina - the nerves - now it might be a different pathway completely, does this mean we could be treating it in a different way?
CORDERO
Absolutely. You're completely right. When I was at medical school, in fact when I began training in ophthalmology, one of the things that you learnt as a cause of glaucoma was raised pressure in the eye. Now we know a lot more now than we did even 10 years ago about the glaucomatis process but now the definition's changed to a nerve disease, an optic nerve disease, where you lose vision field and the idea of pressure is that it's just a risk factor. Now the other problem is that our recent studies have suggested that even if you control the pressure in the eye in patients with glaucoma ...
PORTER
Which is what we offer - the drop therapy we do for most patients.
CORDERO
Absolutely, in fact that's the only treatment that's still available if you go to your clinic. If you just control the pressure sometimes patients carry on losing their vision. And this research actually adds to the fact that there may be other methods of stopping that vision loss occurring. And those that are directed to the mechanisms by which the nerve cells die are very, very important and the whole of our research at UCL is now pointing to new avenues and to treating the blinding disease glaucoma with treatments that used to be used in Alzheimer's.
PORTER
So these are treatments that are aimed at preventing or slowing down the plaques and tangles basically, now there's a lot of ongoing research principally for Alzheimer's but you're saying that that could be extrapolated to glaucoma. What does your discovery actually mean for people with Alzheimer's - might we be able to use the eye to screen - some sort of screening process for this disease?
CORDERO
Yes and I think that's a very - again a very important part of this whole research is because by saying that the eye is an extension of the brain and by utilising the fact that you can actually see these cellular processes going on in the eye, as opposed to the brain, what this could mean is that by identifying these nerve cell death processes going on in the eye you could pick up Alzheimer's disease. Now I say could because obviously we need a lot more research into this and certainly one of the things that we are planning in the future to do is to actually look on a clinical trial basis at Alzheimer patients just to see if this is the case.
PORTER
Because lots of people listening - I mean both are common conditions - glaucoma's particularly common the UK, affecting - well certainly probably millions of people and they're going to be listening now thinking oh I'm at an increased risk of Alzheimer's - we don't know that at the moment do we?
CORDERO
No we don't and I really want to emphasise that I don't think this research means all glaucoma patients will develop Alzheimer's and in the same way I don't think all Alzheimer patients will develop glaucoma. What I do think this does suggest is the similarities between the processes that are very important to the basic way these diseases demonstrate in the body are very similar. And the nice thing about it is that it offers hope to both patients - to patients with Alzheimer's and to patients with glaucoma - because you can actually say that you could use the eye even to look at a way of testing whether your Alzheimer treatment is working effectively, if you can use the eye as the monitoring process.
PORTER
Dr Francesca Cordero talking to me earlier.
Roy, whether or not that ever comes to anything, what's the advantage of making an early diagnosis in Alzheimer's? We've already said that NICE has not approved drug treatments for people with early Alzheimer's, we heard one of our case studies earlier on actually saying he didn't want his wife to know she had Alzheimer's because she'd worry about it.
JONES
Well I think there are two things there - the issue about giving the diagnosis is a complex one and I do understand his comments but if you go back a few years this is what we said about cancer, that the carer, the family would say don't tell the person. There's been some interesting research which carers were asked if someone - whether the person they looked after should be told they had Alzheimer's disease and about two-thirds said they shouldn't. But when asked the same question if they had the problem would they want to know two-thirds said yes. And I think that's the difficulty. The other thing is the drugs that we use say very clearly on the packet "for the treatment of Alzheimer's disease" not for the treatment of memory problems. My general experience has been that it's very rarely a problem but we do need to take into account the ideas of counselling as with other diagnoses and as with a cancer diagnosis, so it's an important issue. In terms of the early diagnosis I think that is still important, I think in many other countries in the world they would not have agreed with what NICE has decided - and I don't agree with it either - and if I had Alzheimer's disease I would certainly want to be getting the benefit when my brain function was as good as it can be.
PORTER
You'd want to be taking the drugs in other words?
JONES
Exactly. And I think the other thing is though there are other issues because as we said making the diagnosis can be quite difficult and there are other things that may cause similar problems, diseases that can be treated - vitamin deficiencies, hormone deficiencies like the thyroid hormone deficiency. So we need to be looking for the causes of this before we decide that everyone with a significant memory problem has got Alzheimer's disease. So that's one area. The other area is that we may want to make plans as a family if we know that the person we're looking after has got something like Alzheimer's, issues about where we want to live, for example, if we're thinking of moving to live nearer to another member of the family we may decide to do that earlier rather than later. There are issues about driving, about things like living will, enduring powers of attorney, lasting power of attorney. So there are a lot of issues that need to be dealt with and we can provide practical support as well.
PORTER
Is there anything we can do to protect ourselves?
JONES
In general there's increasing evidence that we can and what I usually tell my patients and their families is what's good for your heart is good for your brain. And the increasing evidence suggests that there are untreatable things, like our age, for example, which we obviously can't do anything about, but things like our blood pressure, if we're - and this is our mid-life blood pressure, our mid-life cholesterol, mid-life obesity - things like that - cerebral vascular disease, so the things that cause stroke ...
PORTER
So basically looking after the brain as much as we would our hearts?
JONES
Absolutely. And there's also evidence that both physical and mental activity - keeping the brain active, keeping physically active - can actually help. For example, putting mice on a treadmill actually there have been experiments that have shown that the memory part of the brain actually enlarges if you do that. So there's a lot of increasing evidence that if we keep ourselves fit and active, look after ourselves, moderate alcohol, no smoking, they're still the same sort of things that we're getting in general but there are many other things that are in the news all the time that the evidence is much less firm for.
PORTER
Dr Roy Jones, that's all we have time for, we must leave it there, thank you very much.
If you would like more information on the subjects we have covered today, or details on your rights as a carer or your eligibility for benefits then you'll find some useful links on our website bbc.co.uk/radio4. Or you can call our Action Line on 0800 044 044.
As I mentioned earlier, next week's programme is all about the statin family of cholesterol lowering drugs. Around three million people in the UK are already taking them, and according to the latest guidelines, millions more should be. But can a pill a day really keep the doctor away?
Ends
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