Memorandum by the Alzheimer's Society
INTRODUCTION
1. The Alzheimer's Society is the UK's leading
care and research charity for people with dementia, their families
and carers.
2. The Alzheimer's Society has over 25,000
members and works through a network of over 250 branches and support
groups. It provides information and support for people with any
form of dementia and their carers through its publications, helplines,
website and local network. It advises professionals, runs quality
care services and campaigns for improved health and social care
and greater public understanding of dementia. The Society funds
an innovative programme of biomedical and social research in the
areas of cause, cure and care.
3. For more information about the Society's
research programme please go to www.qrd.alzheimers.org.uk
4. Dementia affects over 750,000 people
in the UK alone. Dementia is not a natural part of ageing but
age is the most significant known risk factor. Over the age of
65, the risk of developing dementia doubles approximately every
five years.
5. The Alzheimer's Society feels strongly
that there is a funding crisis in research relating to key health
issues for older people. This has led to a lack of stability in
major research programmes and a "brain drain" of researchers
to countries where funding and conditions of employment are more
stable and rewarding. We see it as a priority to build capacity
and increase funding and stability for promising new researchers.
We view the best use of money to be direct support to research
and the people doing it, rather than infrastructure and additional
layers of management.
6. The number of people with dementia will
increase as the population ages. It is estimated that by 2010
there will be about 870,000 people with dementia in the UK. The
burden of illness created by dementia is huge compared to the
amount of money that goes into researching the condition. The
most common cause of dementia is Alzheimer's disease, which accounts
for approximately half of the people with dementia followed by
vascular disease, Lewy body dementia and a number of other diseases
causing dementia.
7. It is essential that funding is directed
into dementia research to step up the search for causes, a cure
and the best way to care for people with Alzheimer's disease and
other forms of dementia. Only with a better understanding of the
causes of dementia will it be possible to identify appropriate
preventative measures. Only with a clearer picture of how the
diseases causing dementia progress and overlap will it be possible
to develop effective interventions and only with an understanding
of the complex pathology in later stages of dementia and the needs
of people with dementia and their carers will it be possible to
develop the best care.
PROMISING AVENUES
FOR RESEARCH
8. There is increasing evidence that what
is good for the heart is good for the brain. Epidemiological evidence
suggests that as well as helping to keep the heart healthy, good
diet and exercise can help to keep the brain healthy. It is especially
interesting that two major heart disease risk factorshigh
blood pressure and high cholesterolseem to be influential
in dementia. Heart disease risk factors are highly modifiable
either by lifestyle measures like diet and exercise, or by medication,
or both. If these factors are important in dementia too, it may
be that the same measures can be used to reduce the risk of dementia.
It is therefore of particular note that a number of studies have
now shown that people with high blood pressure in middle age run
an increased risk of dementia in later life, and preliminary evidence
indicates that treatments to lower high blood pressure may reduce
the risk of dementia. Studies are also underway to determine the
potential value of statins in reducing the risk of Alzheimer's
disease.
9. There are numerous exciting developments
utilising techniques for the early diagnosis of dementia in people
"at risk". The availability of cholinesterase inhibitors
as licensed treatments for Alzheimer's disease already emphasises
the importance of early diagnosis to enable the best treatment
to be provided for people with dementia. Early diagnosis will
however become increasingly essential to optimal management as
new and more effective treatments continue to emerge.
10. A number of exciting new research avenues
for novel treatments have emerged from a better understanding
of the molecular biology of Alzheimer's disease and an improving
understanding of stem cell biology. The Alzheimer's Society is
particularly excited by some of the stem cell developments and
by research into a vaccine for Alzheimer's. A very limited trial
of a vaccine in humans was stopped in 2002 due to adverse events
in six per cent of the individuals. However the trial seemed to
indicate that the build up of amyloid plaques was reversed in
the brains of people with Alzheimer's disease who received the
vaccination, and preliminary studies in animals and humans have
begun to indicate that safer vaccination strategies are possible.
The Alzheimer's Society strongly supports further research into
the development of a vaccine for Alzheimer's disease.
11. The Alzheimer's Society feels however
that it is important to recognise the broad range of biological
and social research issues that are key to improving the quality
of treatment, care and quality of life for people with Alzheimer's
disease and other dementias. Reflecting this, we fund a portfolio
of research that is both broad and exciting, ranging from studies
determining whether neural stem cells can be redirected to parts
of the brain that are affected by Alzheimer's disease to non-pharmacological
interventions for behavioural symptoms. Substantial increases
of funding are however essential if we are to really tackle these
vital issues.
APPLICATION OF
RESEARCH IN
TECHNOLOGY AND
DESIGN TO
IMPROVE THE
QUALITY OF
LIFE OF
OLDER PEOPLE
12. There have been interesting developments
in assistive technology which can allow people with dementia to
live more independently and remain in their own homes for longer
than would otherwise be possible. An example of the technology
is the "smart home", a home in which many of the appliances
are linked electronically so that they can be customised in a
way that will make daily life easier for the person with dementia.
13. Although we do therefore acknowledge
that "smart technology" will have an increasing role
to play in the care of people with Alzheimer's disease and other
dementias, there are currently many more fundamental issues relating
to quality of life, care and treatment that require research and
towards which funding should be prioritised.
HOW EFFECTIVELY
IS RESEARCH
CO-ORDINATED
IN THE
PUBLIC, PRIVATE
AND CHARITABLE
SECTORS?
14. Whilst research councils and charities
collaborate on specific studies a better mechanism to integrate
more closely would be strongly welcomed. The Society is currently
working with both the MRC and the Alzheimer's Research Trust (ART)
on jointly funded projects.
15. An effective mechanism which led to
a more integrated and co-ordinated structure would be extremely
helpful and enable a more strategic development of research into
ageing. However, it is important that the development of such
a mechanism should not substantially increase "infrastructure"
costs or redirect money from directly supporting researchers and
research projects.
HAVE THE
CORRECT PRIORITIES
BEEN IDENTIFIED?
ARE THERE
ANY GAPS
IN RESEARCH?
16. Currently, within the dementia field,
research has concentrated mainly on Alzheimer's disease. This
is heavily influenced by the pharmaceutical industry, which has
less or no incentive to fund research into treatments for non-Alzheimer's
dementia or interventions that are "non-pharmacological"
or utilise "off-patent" agents. Treatment trials that
are not funded by the pharmaceutical company are hence a major
gap in dementia research. For example, the MRC is currently only
funding one clinical trial in the area of dementia, and no trials
investigating the treatment of non-Alzheimer dementias. This is
extremely important, for example even very basic treatment questions
regarding the use of aspirin or anti-hypertensive treatments in
people with vascular dementia remain completely unanswered.
17. There should be input from consumers,
who must be truly representative, in the setting of research priorities.
We believe that the involvement of people with dementia and their
carers will lead to better quality research and the priorities
of the Society's research programme are set by our consumer panel.
The Society's award winning Quality Research in Dementia (QRD)
programme is an active partnership between carers, people with
dementia and the research community. The heart of the QRD is the
QRD Advisory network: a network of 150 carers, former carers and
people with dementia who play a full role in the research programme
and help set priorities for our research programme.
IS THERE
SUFFICIENT RESEARCH
CAPABILITY IN
THE UK?
18. Large intervention and prevention trials
and developing new treatments are extremely expensive and the
resources to fund such work is painfully inadequate in the UKsubstantially
less funds have been available for specific trials and programmes
of work in the last two to three years.
19. Proposed guidelines to develop research
networks for Alzheimer's disease, stroke and diabetes, and established
networks for cancer and mental health, will provide a slightly
better infrastructure. However, in the absence of major funding
for specific high priority research these networks are unlikely
to address key issues or make a substantial difference. Again,
it is vital that increases in funding go directly to research,
rather than to layers of management or administration related
to research, as this is what will have the real impact on reducing
the burden of illness created by dementia and other conditions
related to old age.
20. A concerted effort is required to increase
capacity in research into ageing and age related diseases in the
UK. The current situation requires there to be specific measures
to encourage this type of research, such as capacity building
grants from the MRC. The development of a lively and active research
community, with an increased number of researchers, good support
and networks, and stable, long term funding would attract new
researchers into the field and encourage existing researchers
to stay in the field and in the UK. This would have the result
of progressing knowledge about the health related aspects of ageing
much more than we can with the current situation.
21. The BBSRC "ERA" and "SAGE"
funding schemes were good examples of productive initiatives on
research into ageing, but we really need a more sustained and
long term strategic approach that looks at specific illnesses
related to age, like the diseases that cause dementia.
IS THE
RESEARCH BEING
USED TO
INFORM POLICY?
22. Currently there is a major problem translating
research evidence into improved care and treatment. Perhaps the
best examples of this problem include the difficulties of translating
models of improved care into routine practice in nursing homes
and changing the health of the nation based upon emerging understanding
of disease risk factors. Setting standards and issuing guidance
is an insufficient catalyst for change. Plans should also include
action specific to older people, utilising the range of local
resources, including those within regeneration programmes, and
reflecting wider partnership working.
23. Substantially more effort and resource
needs to be invested in implementing new evidence to promote health,
care and treatment; and researching effective ways of enabling
this implementation. Currently policy identifies some key areas,
but does not go far enough to enable these issues to be tackled.
To really make steps forward policy needs to move from tokenism
to a strategically planned and adequately resourced commitment
to implement change.
October 2004
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