Select Committee on Science and Technology Minutes of Evidence

Memorandum by the Alzheimer's Society


  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

  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.


  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 factors—high blood pressure and high cholesterol—seem 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.


  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.


  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.


  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.


  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 UK—substantially 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.


  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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