The Journal of Quality Research in Dementia, Issue 1 (lay summary)
Supporting research into dementia
Professor Jim Edwardson
Vice President, Alzheimer's Society
Professor Jim Edwardson is founding director of the Institute for Ageing and Health at Newcastle University.
One thing is certain: there will never be effective therapies for the treatment or prevention of Alzheimer's disease and other types of dementia without massive and sustained investment in research. Across the world, numerous pharmaceutical and biotechnology companies, government and privately funded research agencies, universities, hospitals and medical charities are attempting to understand the causes of Alzheimer's disease and develop a drug that will delay or prevent its onset. The combined costs of this global research effort run into hundreds of millions of pounds each year.
The Alzheimer's Society was established to support people with dementia and their carers, to improve public understanding of dementia, and to campaign for greater investment in dementia services and research. It was appropriate, therefore, to ask whether the Society should be spending its own limited resources on research, and whether its contribution, which is so small set against the worldwide effort, really would make any difference? These were questions that some of us struggled with at our annual general meeting in Nottingham in 1992. There was overwhelming support from the membership, and the Society agreed to provide funds for research into 'the cause, cure and care of dementia', initially in the form of a handful of research fellowships to be awarded each year.
Time has amply confirmed that this was the right decision. So, what has the Society achieved through its research programme and why should we now consider increasing the funds available for research? First, academic groups have made most of the major advances in understanding dementia - many of them in the UK. By providing 'seed corn' funding for the best university teams, the Alzheimer's Society has helped pioneer some of the important areas of work described in this first issue of our online journal.
Involvement in research has had a second major benefit: it gives the Society 'a seat at the table' with much larger partners as far as strategic decisions about dementia research are concerned. The Medical Research Council, the Department of Health and other major funders of research all hear the voice of the Alzheimer's Society. Increasingly, the Society is involved in joint initiatives with these partners, such as the current drive to increase work on stem cells.
Through sustained investment in the best young UK researchers and the leading teams, the Society has acquired a following of clinical, basic and social scientists, intensely loyal to the Society, who help with specialist advice and by speaking publicly about the Society's wider work as well as its support for research. I have no doubt that the Society's research programme has done much to bring groups together and help forge the relationships that have underpinned important initiatives such as the 'UK Dementias and Neurodegenerative Diseases (including Alzheimer's disease) Research Network', which the Department of Health has recently established.
Above all, the Society has led the way in developing the involvement of its members in setting the research agenda, awarding grants, evaluating outcomes and disseminating the results of research. The Quality Research in Dementia programme has been a gold standard for other organisations seeking to involve their members in research. For those of us who are researchers, the participation of people with dementia and carers in the governance of research has had a powerful influence at many different levels.
Alzheimer's disease is proving a more formidable enemy than perhaps many researchers first imagined a decade or more ago, when early understanding of the involvement of molecules such as beta-amyloid and tau in the pathology of the disorder offered new hope for therapeutic intervention. Nevertheless, there has never been a more exciting time for research into dementia than at present: a whole spectrum of new drugs is at last emerging and these will require clinical trials. New and more sensitive methods are becoming available to identify people at risk, to provide early and more effective intervention, and to monitor the efficacy of disease-slowing therapies. Entirely new strategies, such as stem cell activation and even the possibility of a vaccine-based approach to prevention, have appeared in recent years.
The Society has punched far above its weight in supporting such crucial areas of research: this is very clear from the articles in this first issue of the Alzheimer's Society's online journal. It is essential that we continue to increase our support and exploit fully these new and promising avenues for investigation. Only by doing so can we ensure tangible improvements in treatment and care, and ensure that the voice and views of those most affected continue to be heard in the global research effort to defeat dementia.
The Alzheimer's Society's contribution to research
Professor Gordon Wilcock
Vice President, Alzheimer's Society
Welcome to the first edition of the Alzheimer's Society's online research journal.
One of the major aims and objectives of the Alzheimer's Disease Society, as it was called when it was established in 1979, was to encourage and support research. In the early years, we concentrated on developing the Society and its contribution to caring, but we soon began to support research. We tried extremely hard to make sure that we funded a spectrum of research, and we supported and encouraged research centres in different parts of the UK.
The first president of the Society (1980-1982) was Professor Alan Davison. He was professor of neurochemistry at the Institute of Neurology in London, and he and his colleagues were studying the biochemical changes in the brain in people who developed Alzheimer's disease. The choice of an eminent scientist as our first president was a reflection of the early Society's commitment to supporting research. This was based upon a realisation that research would be part of the foundation for improving the quality of care available to people with dementia in the future.
One of the Society's earliest contributions to research, as described in the Newsletter of January 1981, was a request for brain tissue donations to help support research studies. We also asked people who might be interested in taking part in a study of a potential treatment for Alzheimer's disease to contact the researchers involved. Unfortunately, this treatment did not prove to be successful.
One of the main difficulties of developing treatments for people with Alzheimer's disease lies in the evaluation of the benefits of new medicines. In an ideal world there would be a simple test that showed response to treatment - but this is not the case. The Society has played a significant role in helping to develop and evaluate the use of brain scans to test treatments. Nick Fox, who many members of the Society will have heard speak at meetings, has been one of the pioneers in this field, and has been much supported by the Society. His work is particularly important now that we are moving into an era of evaluating medicines that might slow down the rate at which brain cells die.
The Society can be proud of its contribution to research, and can congratulate itself on providing a balance between research intended to help people with dementia and their carers now, and research that has more far reaching consequences for the future - for example, the development of new treatments.