Delivering for people with dementia

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alzheimers.org.uk Delivering for people with dementia Quality research in dementia impact report 2007 08 September 2008

Publications 2007 2008 Scientists disseminate their research results by publishing articles in high-quality, peer-reviewed journals. Each journal has an impact factor which reflects its importance and is a measure of how much the content is cited by other researchers. Alzheimer s Society funded research has resulted in nearly 200 articles in peer reviewed journals and the numbers are rising with each completed project. In 2007 08 research funded by Alzheimer s Society led to 18 articles published in highly-respected and well-known journals. A full list of publications can be found on the Alzheimer s Society website alzheimers.org.uk Publishing negative results It is usually positive and exciting research results that are published in journals, allowing knowledge to be shared and leading to further research. Sometimes results from a piece of research may be negative, making it difficult to get manuscripts accepted by publishers. However it is also important to publish negative findings so that they can be discussed, confirmed or refuted by others. A clinical trial funded by Alzheimer s Society found no improvement in memory with use of Gingko Biloba, a supplement said to preserve memory. We are pleased that the results were finally published this year, allowing people to decide whether to use Gingko Biloba based on scientific evidence (McCarney et al International Journal of Geriatric Psychiatry, June 2008). 1

Supporting excellence in dementia research Alzheimer s Society is keen to support ambitious young scientists and clinicians to succeed in becoming leaders in the field of dementia research. Professor Nick Fox Alzheimer s Society Fellow 1993 1996 Developed magnetic resonance imaging (MRI) for use in dementia MRI: can detect changes in the brain that occur before symptoms of dementia are evident is used in dementia diagnosis to help eliminate other conditions such as brain tumours or strokes is used as an imaging tool to identify effectiveness of potential drugs in clinical trials. Dr Jonathan Schott Alzheimer s Society Fellow 2003 2005 Supervised by Prof Nick Fox Continuing on from Prof Fox s work, Dr Schott applied the MRI scanning technique as a biomarker in parallel with other brain imaging techniques and observations of brain chemistry to help earlier diagnosis and prognosis for dementia. Impact of Alzheimer s Society support Prof Fox and Dr Jonathan Schott have identified a technique for early diagnosis of dementia and are continuing to improve the technique. As a result of Alzheimer s Society funded research, Prof Fox and Dr Schott have published 26 articles in high-quality, peerreviewed journals. Dr Schott is an academic clinician in the Institute of Neurology, London. They continue influencing research into brain imaging internationally. Nick Fox is Professor of Neurology and MRC Clinician Scientist Fellow at the Institute of Neurology, London. 2

Three generations of excellence in dementia research Dr Diane Hanger, AS Research Fellow 1994 1999 undertook a fellowship investigating the expression and metabolism of neurofilaments relevant to senile dementia of the lewy body type. Dr Wendy Noble, AS Research Fellow 2004 2007 benefited from Dr Hanger s supervision during her project: The role of tau phosphorylation and the impact of protein kinase inhibitors during neurofibrillary tangle formation. Miss Clare Garwood, PhD student Clare is working with Dr Hanger and Dr Noble in the Institute of Psychiatry, London on the development of a potential drug that may reduce the toxicity of tangles. Funding fellowships Alzheimer s Society has funded 37 fellowship grants since 1991 to young scientists in dementia research. The impact of Alzheimer s Society funding of fellows has been far reaching, with over 100 publications in peer reviewed journals and over 80% of past fellows continuing in the field of dementia. Of the 28 completed fellowships 8 went on to receive a further award from Alzheimer s Society and 17 received funding from other larger funding organisations, illustrating their success. Alzheimer s Society will continue to fund talented and ambitious young scientists to become leaders in all fields of dementia research. Total fellowships funded Fellowships completed Past fellows continuing dementia research Past fellows having got permanent academic positions Past fellows still working in dementia research in other types of positions Past fellows getting further funding from Alzheimer s Society Past fellows getting further funding from MRC, EPSRC, NHS, Wellcome Trust etc 37 28 23 16 7 8 17 3

Involving carers and people with dementia QRD funding programme The Alzheimer s Society funding programme is led by the QRD consumer network who sets the priorities and take part in all stages of the selection process and management of the grants. Members of the network also take part in groups and events that are not organised by Alzheimer s Society, where they have the opportunity to influence the larger dementia research agenda. Examples DeNDRoN QRD consumer network has members on every DeNDRoN area board, using their knowledge and skills gained through being part of the QRD programme to ensure the voices of those affected by dementia are represented in the work of the DeNDRoN network. UK Dementia Congress Two members of the QRD Consumer Network presented at the UK Dementia Congress one outlining their involvement in a successful AS funded research project and another detailing their experience of providing advice and guidance on the construction of clinical trials databases and information websites. Evidence-based approaches for improving dementia care in care homes Professor Rob Howard developed and led a clinical trial of a training intervention, the Focused intervention in training and support (FITS), which showed that specific training of care home staff leads to reduced prescription of antipsychotic drugs to treat agitation in care home residents. The outcome was a published training manual, Evidence-based approaches for improving dementia care in care homes which has sold 130 copies throughout the UK, to care homes and other training professionals. 4

Impact of funding Alzheimer s Society has funded almost 100 research grants, including 42 project grants and 37 fellowship grants. Alongside these eight innovation grants, three Cochrane Reviews, two dissemination grants and more recently five PhD studentships have also been funded. Using the UK Clinical Research Collaborations Coding System, opposite is an analysis of how Alzheimer s Society s research funding has been spent comparing before and after the creation of the QRD consumer network. Each research activity is presented as a proportion of the total spend. Analysis of the funding portfolio identified that with the influence of the QRD consumer network since 2001, Alzheimer s Society funds more clinical research than before the QRD consumer network was introduced. The research priorities were reviewed during this year and the QRDcn members will continue to support prevention, cause, cure and care with particular focus on understanding how to prevent or delay the onset of dementia, hospitalisation of people with dementia, palliative care, translation of basic science into treatments, testing of existing off-patent drugs and stem cell research. Research activity Proportion of total spend Proportion of total spend 30% 20% 10% 0% 10% 20% 30% 30% 20% 10% 0% 10% 20% 30% Underpinning Aetiology Prevention Detection & Diagnosis Treatment Development Treatment Evaluation Distribution of funding before QRD introduction of consumer network Distribution of funding after QRD introduction of consumer network Disease Management Health Service Over 80% of all completed grants to date have published results in peer reviewed journals, resulting in over 200 articles in scientific, clinical and dementia-related journals. Funding fellowships has a greater impact in terms of resulting publications, with over 60% of the total articles published from Alzheimer s Society funding resulting from fellowships. In terms of future career, 95% of Alzheimer s Society fellows go on to full time research positions as research group leaders and lecturers. This ensures that we are supporting continuation in dementia research in the UK. Alzheimer s Society funding has resulted in production and dissemination of five training manuals for dementia professionals, general practitioners and care home staff.

alzheimers.org.uk Collaborations Alzheimer s Society works with other organisations to get projects off the ground that we cannot fund by ourselves. This year saw the report of the first independently run trial on Donepizil as a treatment in later stages of dementia which was funded by the Medical Research Council in collaboration with the Society (Howard et al, New England Journal of Medicine (2007) 357; 14:1382-1392). For further information about the Alzheimer s Society s research programme visit alzheimers.org.uk E research@alzheimers.org.uk Fundraising enquiries Supporter Care T 0845 306 0898 E supportercare@alzheimers.org.uk Photographs Front cover: Clare Garwood, PhD student Inside front cover: Gillian Andrew, QRDcn member Alzheimer s Society Devon House 58 St Katherine s Way London E1W 1JX T 020 7423 3500 E info@alzheimers.org.uk Registered charity no. 296645 Company limited by gurantee and registered in England no. 2115499