Select Committee on Science and Technology Minutes of Evidence

Examination of Witnesses (Questions 303 - 319)



  Q303  Chairman: Many thanks to you for coming and perhaps especially to Mrs Kelly because you are stepping in in the absence of Robert Meadowcroft and we appreciate that very much. May I also thank you and those whom you represent for the written evidence that has been submitted. That has also been very much appreciated and it is part of the record that we have. Perhaps I can say very briefly what this Committee is trying to do. We are about half-way through our deliberations. We are a Sub-Committee of the Science and Technology Select Committee and our intention is to produce a report probably before the summer recess. There are two main areas that we are focusing on. One is the medical/biological science of ageing and the issues that come up in that area, and the other is on assisted technology and again what can be done to improve the quality of life for those who are subject to the various vagaries of growing old. We do not have powers in the sense that we cannot tell the Government what to do, but we hope we can influence what they do. One of the issues we are looking at and we may well ask you about is whether or not the research strategy in UK plc is well balanced and covers the ground and whether there is enough collaboration and all that sort of thing. My colleagues all have names before them so I shall not go round the table, but we will all come in and ask questions of various kinds. It would be very useful when you start giving your first piece of evidence if you could just say for the record who you are and what your own organisation specifically does in this area. I will start with a very general question. I think it would be good to have your views on this for the record and also because there is not a complete understanding in the community at large. What are the differences and what are the similarities between Alzheimer's and other forms of dementia? Is it something that would be noticeable to the layperson? Is it something that you would regard as having a scientific basis for making that distinction? There is a whole series of implications. I wondered if I could ask each of you to say a little bit about that as we start and then we will follow through with the questions that we have in our minds. Professor Brayne?

  Professor Brayne: I am Carol Brayne. I am Professor of Public Health Medicine at Cambridge University in the Department of Public Health and Primary Care and I have been working in ageing studies for the last 20 years, following up individuals largely aged 75 and over, seeing them at regular intervals and trying to get at the biology underpinning the changes that we see with age, most particularly brain ageing. I come at that question from a population perspective and not from a clinical perspective. What I can tell you is what we have seen over time, which is a decline in the general population aged 65 and over, accelerating after the age of 75 and over in fairly crude measures of cognition, but it is a distributional change, and within that clearly the bottom distribution are those that would be labelled as demented within the care service because one needs to have a cut-off point in order to be able to provide care and appropriate support to individuals. When one looks at the brains of these individuals across the whole spectrum one sees a mixture of pathology. There is vascular Alzheimer's and I am talking about really the very old population, so the 80-year olds and above who are most of the people to whom this kind of research applies. In our kind of population-based studies it would be difficult to differentiate between predominantly vascular and predominantly Alzheimer's, other than clearly if individuals have a stroke they are at much greater risk of having dementia and if they have Parkinson's disease also within the population they are also at greater risk of developing dementia.

  Q304  Chairman: That is very helpful.

  Professor Ballard: My name is Clive Ballard. I am Director of Research for the Alzheimer's Society and a Professor of Age Related Disorders at King's College London, although I am here predominantly representing the Alzheimer's Society who are the major charity representing people with dementia and their carers in the UK and who fund a research programme in that area. There are a lot of similarities but there are some important differences. I think the similarities are that all the late onset dementias lead to progressive and functional disability, all of which leads to much the same requirement in terms of support, care and treatment. I think there are important differences. The three most common conditions Carol has already mentioned, Alzheimer's disease, vascular dementia and dementia related to Parkinson's disease, and there are important symptom differences. For example, a lot of people with vascular dementia will have strokes and related disabilities. People with Parkinson's disease obviously have the motor symptoms of Parkinson's disease as well as the cognitive and functional problems. There are some very important differences. I think the most important difference of all comes when you consider treatment effects. For example, if somebody has a disability because of a large stroke, that is likely to be very different from somebody who has a general atrophy and shrinkage of the brain related to Alzheimer's disease. If you looked at somebody from the end of the room their disabilities might appear harmless, but what underlies them is very different and therefore the treatment need might be very different. The reason I think that is particularly important is that especially some of the non-Alzheimer's dementia, such as vascular dementia, have been particularly neglected and there are very, very few treatment studies in those areas.

  Mrs Kelly: I am Linda Kelly, Chief Executive of the Parkinson's Society. We have two main charitable aims. The relevant one to you is that we promote research into cause, prevention and cure of Parkinson's. I represent people with Parkinson's and their families, and I think it is that wider remit that is quite important. Contrary to quite common general public opinion, Parkinson's does affect mental capacity. Most people think it is about movement and tremor, but in the population about 20 or 30 per cent of people with Parkinson's will get dementia. There have been some studies in the north of England and in the south where they have shown that if you live with Parkinson's for 20 or 25 years the likelihood that you will get some sort of cognitive impairment is up to 80 per cent, so it is actually real and important. I think there are differences between the dementias. I take Professor Ballard's point, but I think the work on dementia and Alzheimer's has been where money has been put in. What we have found over the last two or three years is that agents who are not licensed for Parkinson's disease give clinical benefit and therapeutic gain and I think that is quite important. There are agents out there that could help many people but who are not licensed to do that. Dementia is actually an indicator of whether people go into care homes or not. I think it costs about £4,000 a year to treat someone with Parkinson's, and in a care home it is £20,000 plus. It is the rest of it that is important because if you can get people at home, they can be with their families, they tend to do much better and they actually tend to have better control of their symptoms. As soon as you put people in care homes they tend to deteriorate and you are lucky to see a GP or a registered nurse. I think dementia is not that well treated, it could be better treated and I think when you do treat it you can actually help people stay by and large in their home environment, if they are still able to do so.

  Chairman: That is very helpful.

  Q305  Baroness Hilton of Eggardon: I would like to pursue the generality of dementia and specific diseases. Do you think that all dementias will turn out to be specific diseases like Alzheimer's or do you think there is a decline with age which is a more generalised thing, or is it all in the end going to have specific labels?

  Professor Ballard: I think that ageing in itself does not cause dementia, there have to be specific disease processes. I think in a large number of people, particularly in the older age groups, there is an overlap of these processes, so it might not be purely Alzheimer's disease or purely vascular dementia or purely Parkinson's disease, it might be a combination. For example, about 40 or 50 per cent of people who have Alzheimer's also have significant vascular disease in the brain, especially in the over-80s group. I think Carol mentioned that in population studies of that group when they overlap the pathology is very common and that is certainly the result of our own research findings on Alzheimer's as well.

  Mrs Kelly: I think what is interesting is that there is what is called Lewy body Disease with dementia and there is Parkinson's Disease where they got dementia and currently the discussion is that these two conditions are a continuum. So I would support Clive's view on that.

  Professor Brayne: What happens is that people come to see their clinicians and they become known for a particular area of interest. Secondary and tertiary referral centres is where progress comes from in a way because they gather together cases which have similar characteristics, for example early onset dementia and that then becomes defined. Then you have some criteria that you can apply to the more general population and then you find this issue of it blurring out, that it is not as specific as it seemed from the clinical perspective or the very highly researched perspective. I would like to expand on what Clive said about dementia or cognitive decline not being part of ageing. The population data that we have shows that—obviously there are people who do extremely well for very prolonged periods and we all know people like that—there is this tremendous spread into the oldest age groups and none of the people in our own populations escape without some pathology in their brain by the time they die. This information has not been published yet, but our own data suggests that by the time people die the prevalence of severe cognitive impairment or dementia at the time or in the year before death is very high and the prevalence of dementia by the age of 85 plus is at least 25 per cent. So we are talking about, if it does not occur with age, a process which is extremely common with ageing.

  Q306  Baroness Hilton of Eggardon: Of that 25 per cent, how many will be sufferers from Alzheimer's and how many will be suffering from vascular degeneration or Parkinson's?

  Professor Brayne: They will have a mixture.

  Q307  Baroness Hilton of Eggardon: So you cannot divide it up?

  Professor Ballard: I think if you looked at what was believed clinically to be the predominant condition you would find probably about 50 to 60 per cent of the people would have Alzheimer's disease, 15 to 20 per cent would have vascular dementia, 15 to 20 per cent would have either dementia with Lewy bodies or Parkinson's dementia, and then there would be something like five per cent of people with rarer conditions. I would agree with Carol that although you can decide which are the predominant conditions, a lot of those individuals would have an overlap of the different pathologies.

  Q308  Lord Soulsby of Swaffham Prior: From the population point of view is it possible to identify certain genetic groups, Alzheimer's in Iceland for example, that are more liable to develop these dementias than others?

  Professor Brayne: In our population studies we attempt to replicate the genetics findings that come from the more specialised settings. The only gene that has come up as being a likely one at the population level rather than in very high risk families is really the Apolipoprotein E, it is of that particular type and in many studies E4 has been shown to be associated with increased risk. In the bigger study which I have been associated with we have found that the risk is not as great as it appears from the other population studies, and this may be because we are looking at the older people with dementia and by that time the background risk of dementia has risen, so the genetic risk actually becomes less important.

  Professor Ballard: I would agree with that. In terms of Alzheimer's disease and probably in terms of vascular dementia the Apolipoprotein E gene seems to be the most important. I think one reading of the literature which would support Carol's view is that that gene might be responsible for bringing forward the age of development of dementia rather than causing it per se.

  Mrs Kelly: Some publications that have come out this month looking at genetic risks found a gene mutation that is actually in sporadic Parkinson's, and so at the minute they have seen it but do not know whether it leads to neurodegeneration, and that is the important question. There will be more work done in that field. The work was done in England, Italy or Spain and the US and the commonality of results was interesting.

  Q309  Chairman: May I just follow up with a slightly more general question but building on what you have said, and it is something we run into all the time and we keep asking it ourselves. Is there a helpful difference to be drawn between what you might call the natural process of ageing and the diseases that cluster around the ageing process? We heard differing views on this when we were in Washington last week from the NIH people. It would be interesting to hear your own thoughts.

  Professor Ballard: I think clearly there is a relationship, but the way that I would view it is that as people age, certain diseases become more frequent and they accumulate over time and therefore have a bigger influence on things. It is not ageing itself that causes the problems but the diseases that become more common with ageing. If you look at the age of a particular population then the risk of particular conditions will be higher, but that is because the risk of the underlying factors that contribute to those conditions become higher rather than that age itself causes the problems per se. I think there clearly is a close relationship, but it is really about understanding how these disease processes develop over time and with age, I think that is important rather than the age itself.

  Professor Brayne: I think there is a huge blur between the normal ageing process with some decline and the very frail ageing, and that has been outlined from our own work as well as many other pieces of work. I am a lumper because I approach the problem form a population perspective. Splitting has allowed scientists to work on very specific areas which are parts of the pathological process and identify different pathologies which contribute. If that had not happened, if people had just continued to say that this is all a mixture of things and it is all very highly age related even if not completely ageing itself, that would not have happened, that same focus and ability to make it an interesting scientific question and attract scientists and so on to do it.

  Q310  Baroness Walmsley: Which is the more important factor, the genetic predisposition or age? Can you put proportions to it?

  Professor Brayne: If you were in a family with one of the serious genetic mutations it would be the genes, but if it is in the general population I would say age is by far the strongest factor.

  Professor Ballard: Age is clearly very strongly related, but I think it is about understanding why age is strongly related. If you look at risk factors for Alzheimer's disease other than genetic factors, for example high blood pressure in mid-life is a substantial risk factor for developing Alzheimer's disease in later life. There are also some environmental factors like dietary factors and things that have been suggested to be important. People who have had major head injuries in mid life or early life are at a three-fold risk. There are a lot of environmental factors that happen to people in early or mid life that greatly affect their risk of developing Alzheimer's disease in later life as well as the genetic factors.

  Mrs Kelly: With Parkinson's disease you get people with young Parkinson's. I think it is useful to look at natural ageing and split it off from the condition because you can get clues then on how you might help people. We have just done some work on splitting age match controls in people with Parkinson's, and you can help people understand what is natural ageing and what is due to Parkinson's and perhaps focus treatments on that. With regard to percentages, genetics in Parkinson's is less than one per cent, it is tiny. On average it is when you are over 65 that you get Parkinson's, but one in 20 are under 40. It is a combination of genetic susceptibility but then you have to consider environmental factors and it might be things like Clive says, but it could be things like pesticides and living in rural areas. If you can understand what accelerates the ageing process in younger people that might help not only younger people but older people as well. So it is a slightly arbitrary split but I think it is quite a useful one from a Parkinson's perspective.

  Q311  Baroness Emerton: Taking what has just been discussed and understanding that neurodegenerative diseases are clearly a very important part of the ageing process, how great do you think the overall impact is in terms of health, quality of life, social and economic participation? How is this impact changing as life-span continues to increase, and what are the main issues for scientific research? In what ways is your organisation (or your research community) addressing these issues? What are the highest priorities? What are the greatest scientific challenges?

  Professor Brayne: The economic cost depends on which group of diseases you are looking at, but there is no doubt that the rarer disorders that occur, like Parkinson's disease, in economically active age groups. Early onset dementias and other major neurodegenerative diseases may not be overall costly in terms of the country, but are massively costly in terms of the individual and the community around them. The vast majority of the neurodegenerative disorders are happening in the older age groups where the economic impact of the individual is less because they are not in paid employment (although that may change if the pension age is abolished), and clearly they have a very major impact in terms of formal and informal caring to the societies around those individuals, and in terms of what needs to be set up in society to support those individuals. The CFAS study which I have been involved in along with Professor Bond from Newcastle, has an associated study—the resource implication study—in which he looked at formal and informal caring and he has produced a report, and there are some costings within that which estimate it in the millions. It depends on how you cost it, but there are figures out there. If it is helpful to the Committee I could provide that paper.

  Q312  Chairman: That would be helpful.

  Professor Brayne: The research community is addressing questions in terms of the biology of ageing and the biology of specific neurodegenerative diseases. Clive will comment on the Alzheimer's Society's very good attempt to generate biological and wider research, but I think there is a difficulty with the wider types of research. Most of the biological lab-based stuff is aimed at providing the bullet cure, and given the mixture of pathologies that we see in the older age groups I think it is very unlikely that that is going to make an impact on old age dementia, certainly in the near future and maybe in the longer-term. There is an importance in terms of trying to work across from the lab through to the population, and from my perspective it would be very good to see some sort of strategy, whether it be an NIA-type strategy or something else, to link these things up. It is not that people have not recognised it, the ESRC have, the BBSRC have and so have SPARK. There is a lot of interest and awareness but it is not quite all working together yet, and it is very difficult to get people working together on it. It is difficult to generate very good proposals which are clearly fundable. It is moving in the right direction.

  Baroness Emerton: In time for the increasing age range that we are facing in life, says one who is particularly interested!

  Q313  Chairman: We feel it quite consciously in this House! You can see the demography is advancing quite quickly.

  Mrs Kelly: There are findings that Clive alluded to that should be underpinned by very robust research, and that research is very difficult to do. We would clearly like the research community to be doing it and that ought to be done within five or 10 years. The longer shot stuff, middle aged interventions, is going to be a much longer shot. We need a very robust research infrastructure to support that kind of long-term work.

  Professor Ballard: I think that if we are not careful it could turn into a major crisis. There are about 700,000 people with dementia in the UK now, and looking at the projected population changes, that will be over a million before very long, and it will probably double by the middle of the next century, so that is an awful lot of people with dementia. Currently services and research addressing the issues are already very stretched, and if those numbers carry on increasing in that kind of way the condition will not be managed with current levels of resource or planning. Unless there is good strategic planning now it will become a crisis in 15 or 20 years' time. I think there are major issues to address. Going back to the cost, I think the CFAS study might well provide better costs, but in 1997 the Alzheimer's Society commissioned a report as part of their submission to NICE and that estimated a cost in the UK per annum of about £6 billion and that was probably an under-estimate because it was largely based on direct care costs and did not look at indirect costs such as the type of the carers involved in providing that care. It is a very, very substantial cost. It is also very high in terms of human cost. Obviously for somebody who has a dementia illness it impacts considerably on their functional capabilities, their independence, their autonomy and their quality of life. It is not impossible to provide somebody with severe dementia with a good quality of life, but sadly with the facilities that are available that is rarely the case. It is not impossible but generally it has a very major impact. If you look at carers, it also has a very major impact there. In a cross-section at any one time, as well as the subjective burden that carers might feel, about 50 per cent of carers would meet clinical criteria for depression and over a year of follow up about 80 per cent of carers would meet those kinds of criteria. So it is obviously having a very big impact on those individuals and it affects their physical health as well. People make more trips to their GP and are prescribed more medication and spend more time in hospital. There is a very big human cost to people with dementia and their carers.

  Mrs Kelly: I would be slightly pushier than Clive about it. I think that the care structure in the UK has changed significantly. I think carers now, people with dementia, particularly the elderly, are very often elderly themselves, and I think being able to rely on a daughter and son or even grandchildren is not something you can do because most people have to work now, it is an economic need. As the incidence increases and more people live longer there is a great burden which a lot of people cannot cope with. Dementia often means that you will go into a care home and that is difficult. Care is very stretched in the UK and it is not going to be less stretched as we go forward. I do think there is an issue between balance of biological and cell science and translating it into clinical practice, I really do. I think it is true today and I do not think it may happen, I think it is happening now. That does not mean to say you want to get rid of the very good and high quality science we do, but it does need to translate into something and we would like to see a much more assertive stand on that. What are we doing? We did the analysis ourselves as we felt you have to do it yourself, you cannot complain if you are not doing it, and so we have asked our members what outputs they would want in research terms over five and 10 years to try and get some practical things we would like to see happening. We are just in the middle of that exercise and what is very interesting is that a lot of common things come up, so people are actually quite a lot in agreement.

  Q314  Baroness Emerton: I think I am right in saying that there are in excess of six million informal carers caring for the elderly with dementia. I think you quoted, Professor Ballard, that 50 per cent are showing signs, so we are talking about three million people who might be showing signs of degeneration themselves.

  Professor Ballard: I said certainly have depression.

  Q315  Baroness Emerton: That is quite an important factor when we are considering the care pattern and the care provision.

  Professor Ballard: Yes.

  Q316  Chairman: Care in relation to the illnesses that you talk of is more intensive than in many other aspects of care.

  Professor Ballard: One of the best books was actually called The 36-Hour Day and it was describing the care experience, and I think that is a very, very good description of it.

  Q317  Baroness Walmsley: To what extent are your priorities recognised by Government departments? Do you feel there is a good link between science and policy in the field of neurodegenerative disease research? Could you say in what ways you think the situation could be improved and more could be done to develop links?

  Professor Ballard: At the moment my personal opinion and the experience of the Alzheimer's Society as well is that I am not sure that policy and research do very well together at all. There has been a lot of rhetoric about so-called translational research in the last five years. I personally do not see very much evidence of a commitment to increasing funding or strategic planning to improve that. One of the things that has been mooted and is happening at the moment is the development of clinical research networks, one of which is being focused on Alzheimer's disease and will be developed, and that is very much an infrastructure predominantly for clinical trials which is very helpful, but that does not actually provide the support or funding for the actual trials that are happening, it is just an infrastructure for them. In addition, clinical trials, although extremely important, are only a modest proportion of the scientific work, both basic lab science and social science, that is needed in order to develop better care, better treatments and prevention. It worries me greatly that there is a lot of rhetoric without very much support to underpin them and that what support is available is focused on very narrow areas and does not recognise the breadth of work that is necessary in order to take the agenda forward. I think it particularly concerns me, if you look at what is happening to young scientists in the UK at the moment, that most promising PhD students are either moving to take up posts in industry or they are moving to the United States or other European countries because there are more secure patterns of funding and there are better ways of helping people to develop their careers. So in addition to funding specific projects and specific infrastructure it worries me greatly that if there is not the investment in research capacity to develop the world-class scientists of the future we will be left in a very sad situation.

  Q318  Chairman: Is there evidence or is that an impressionistic picture of the movement of people? Have surveys been done recently?

  Professor Ballard: There are surveys. I do not have those figures at my fingertips but I can get hold of some of that information. I think there is certainly a lot of evidence of reductions in more junior levels of scientists, more people going abroad and less available resources for those individuals who are in the developmental stages.

  Q319  Baroness Walmsley: Can I ask the other two if they agree with that point of view and ask you all where you think the lead should be coming from to improve the situation?

  Professor Brayne: When you say do we agree, do you mean specifically about the drain, the loss?

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