Examination of Witnesses (Questions 303
- 319)
TUESDAY 25 JANUARY 2005
PROFESSOR CAROL
BRAYNE, PROFESSOR
CLIVE BALLARD
AND MRS
LINDA KELLY
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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