Defeating dementia through research

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1 Defeating dementia through research Foreword 700,000 people in the UK have dementia and one million people will develop the condition in the next 10 years. 1 Dementia is caused by diseases of the brain that gradually rob people of their lives. There are no treatments to slow its progression, there is no cure and quality of dementia care in Britain remains in the bottom third of Europe. By 2018 dementia will cost the UK 27bn a year. 2 Without research to provide better prevention, diagnosis and treatment, the emotional and financial burden of dementia will be unaffordable, even within the next decade. The UK is playing a crucial role in the race for a cure, leading the world in basic and clinical research, yet dementia research is drastically underfunded. The government only invests 2% of its medical research budget on dementia, compared to a third on cancer. 3 The Medical Research Council (MRC) and Department of Health (DH) are convening a Dementia Research Summit, due to take place in Summer Alzheimer s Society and the Alzheimer s Research Trust are calling on the government to utilise this opportunity and work towards a dementia research plan. Greater investment in dementia research is also essential. The government needs to triple its annual investment in dementia research to 96 million over the next five years to provide better care today, better treatment tomorrow and to avert financial crisis. Rebecca Wood Chief Executive Alzheimer s Research Trust Neil Hunt Chief Executive Alzheimer s Society

2 UK dementia research: the need for more support and a coherent Dementia Research Plan The UK s leading dementia charities have come together to outline what steps the government must take to fight the condition. This report reveals the current state of dementia research funding and highlights opportunities for the future. Research Funding 1. UK dementia research is massively underfunded in comparison with other major diseases, like cancer. The government only invests 2.5% of its medical research budget on dementia, compared to a third on cancer: Department of Health Medical Research Total government Council spend Cancer research 161m 159m 85.6m 89.5m 246.6m 248.5m Dementia research 22.8m 22.2m 6.4m 10.2m 29.2m 32.4m Figure 1: Funding for cancer research and dementia research by the Department of Health, Medical Research Council and government UK dementia research is underfunded in comparison with other leading research countries, even when accounting for population size: Government annual dementia research spend per head of population (2008 figures) Amount spent in s USA (2008) Germany (2009) France (2009) UK (2008) Figure 2: Comparison of government annual dementia research spend per head of population for US, Germany, France and UK. 5

3 Research Output In relation to research, the UK does more with less. We are the leading European country for research impact, as this analysis of the top 100 cited original research publications from reveals: Figure 3: Top 100 cited Alzheimer s Disease/dementia research papers, The change we need The Dementia Research Summit must lead to appropriate co-ordination, prioritisation and investment to drive forward the dementia research that will improve prevention, diagnosis, care and treatment. Specifically, we want to see: development of a vision of how dementia research might deliver improved treatment and care for people with dementia over the next five years and beyond an increase in research expenditure to ensure dementia research receives the same investment as other major diseases such as cancer and heart disease. Over five years, the government, through the MRC and Department of Health, should triple its annual funding for dementia research to 96 million. Proportionately this would put the UK on a par with other world leaders like the United States, and start to bridge the gap between government funding for dementia research and cancer research creation of a dementia research environment to attract, develop and retain the very best scientists.

4 To do this we need: a comprehensive implementation plan that addresses cause, cure, care and public health research joint engagement by government, the research community, charities, people with dementia and those who care for them and pharmaceutical companies to make this happen action to make NHS patients aware as a matter of routine that they may participate in research studies, as well as considering research opportunities as new memory clinics are set up. to further support and increase the number of dementia researchers to meet the growing research demands over the next five years. Opportunities in UK dementia research We have the most productive group of dementia researchers worldwide. With investment, the UK is in an excellent position to make a major contribution to the international fight against dementia. The most significant opportunities are outlined below: Investing in clinical research is vital if we are to translate our evolving fundamental knowledge of dementia into available treatments. We must invest in clinical trials and use the unique value of the NHS to improve patient access to clinical trials. This will allow new treatments to reach people with dementia as soon as possible. Our lack of understanding of the mechanisms of the disease may mean we are treating secondary symptoms, rather than primary causes, therefore utilising the enormous existing potential in basic research is essential. Analysis of post-mortem tissue underpins much of the research into dementia, but there is a great need to recruit and train neuropathology experts. UK brain banks are valuable resources that must be maintained to effectively support dementia researchers. The UK has major strengths in molecular genetics, which will be one of the main drivers for dementia research over the next five years. We must sustain and expand this resource. Improving our understanding of the role of genetics in dementia could form the basis of diagnostic tools or treatments to prevent dementia in people who are known to be at risk. Without investment, the UK s capacity for research into molecular biology will not meet future demands. This field of research is vital for scientists to explore the complex biological mechanisms of dementia and find potential targets for treatments in the future. Disease modelling in animals is an important and unavoidable aspect of dementia research. Better, more accurate animal models of dementia would greatly improve our understanding of the disease and our ability to test new treatments. The fact that biomedical research in the UK, including dementia, is hindered by regulatory procedures must be addressed. Earlier and more accurate diagnosis is a priority for improving quality of life for people with dementia. The UK should build on its strengths in this field to develop diagnostic tools based on brain imaging such as MRI scanning, or development of a simple blood or CSF test for dementia.

5 PET scanning allows researchers to trace events and molecules in the brains of people with dementia. This technology has great potential for improving our knowledge of dementia, but is currently under-resourced in the UK. Stem cell research has enormous potential to provide the basis of a treatment that could cure or prevent dementia. Bioinformatics is the use of computer-based modelling and analysis to investigate biological processes such as those that occur in dementia. Despite the availability of quality experts in the UK, bioinformatics is not currently applied to dementia research. Better use of bioinformatics would enable modelling of the dementia process and predictions for drug development. The UK has not fully exploited its capacity in epidemiology. By including more groups of people with dementia in epidemiological research, our understanding of the condition will be improved. This will provide a crucial evidence base to underpin public health initiatives and to help prevent dementia. Research is essential to improve the quality of life of people with dementia. UK clinicians and scientists have been international leaders in this field, and need to play a key role in developing better non drug treatments, training and care. This document was compiled by Professor Clive Ballard, Director of Research, Alzheimer s Society, and Professor Julie Williams Chief Scientific Adviser, Alzheimer s Research Trust. References 1 Alzheimer s Society 2007, Dementia UK, A report by the Alzheimer s Society on the prevalence and economic cost of dementia in the UK by Kings College London and London School of Economics, Alzheimer s Society, London. 2 The King s Fund 2008, Paying the Price: the cost of mental health care in England. King s Fund, London; Alzheimer s Society 2007, Dementia UK, A report by the Alzheimer s Society on the prevalence and economic cost of dementia in the UK by Kings College London and London School of Economics, Alzheimer s Society, London. 3 Parliamentary question [241057], 16 December 2008, House of Commons. 4 Ibid. 5 Based on: Parliamentary question [241057], 16 December 2008, House of Commons; US Department of Health and Human Resources National Institutes of Health, January 2009, Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC) (accessed June 09); Winblad, B., Frisoni, G. B., Frolich, L. et al European Alzheimer Disease Consortium Recommendations for future Alzheimer s disease research in Europe. Journal of Nutrition, Health and Ageing, 12, 683-4; Gouvernement of France, Le plan Alzheimer , Portail du Gouvernement, (accessed June 2009) 6 ISI Web of Knowledge topic search: AD or dementia articles (22,643 in total)

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