Living with Dementia May 2008

Dementia research has long been the Cinderella of medical research, losing out to cancer and heart disease in the competition for attention and resources. Whilst everyone wants to find a cure, this is a very long-term objective. Important questions about how best to help people with dementia and carers here and now have been neglected for too long. But this situation is changing.

Dementia is moving up the research agenda and funds are appearing not only for basic sciences research but also for social and organisational studies. In England there is an increasingly integrated research and development process.

The National Institute of Health and Clinical Excellence (NICE) has made a strong case for more research in dementia care, although this has been overshadowed by the controversy of the cholinesterase inhibitor medicines.

The government has funded a research network for dementias and neurodegenerative diseases (DeNDRoN), and this now covers half the country, with a similar network being formed in Wales. There is, at last, substantial funding for programmes of dementia research coming from the National Institute of Health Research (NIHR). Several programmes of dementia research, each worth £2 million and lasting five years, have already started.

One of these programmes is EVIDEM - Evidence based Interventions for Dementia. The programme is aimed at developing and testing interventions which improve patient, carer and service outcomes throughout the dementia journey, from early signs of dementia to end-of-life care. EVIDEM is run from Central and North West London Mental Health Trust (CNWL), and the work will be carried out by a multi-disciplinary research team based across five universities.

Five separate projects are being run within the programme (see below). EVIDEM will bring together the expertise of GPs, nurses, social workers, old age psychiatrists, economists, research scientists and people with dementia and carers to provide an important mix of skills.

EVIDEM is currently recruiting people who wish to contribute to this dementia research to change the way in which services work. It is an ambitious programme, as we hope to recruit 2,000 people over the five year period. People with dementia and their families who join EVIDEM will be offered the opportunity to take part in one or more of five projects.

These are:

• Improving the ability of GPs and practice nurses to recognize the early signs of dementia and offer help.
• Testing the effect of exercise as a treatment for anxiety, agitation, depression and other psychological symptoms and behaviour changes in dementia.
• Working out ways to reduce the impact of incontinence on quality of life.
• Ensuring that people with dementia get the best possible care at the end of their lives.
• Studying exactly how the Mental Capacity Act 2005 is being applied, and how this helps people with dementia and their families and supporters.

The fruit of all this effort will not just be learned articles in scientific journals. We are running annual summer schools for NHS and social care staff, and will produce toolkits for practitioners to apply in their everyday work, as well as computer systems to help with diagnosis and systematic, continuing care.

These projects focus on complex and often sensitive topics, but we believe they are important and need attention now. The government agreed with us. If you live in the North Thames area and feel that this research is practical and important, we would welcome your help.

To join the research programme, you can either write to me, Steve Iliffe, at Department of Primary Care, UCL, Royal Free Campus, Rowland Hill St., London NW3 2PF, send me an email at s.iliffe@pcps.ucl.ac.uk or call Trish on 020 7830 2338 or Kalpa 0207 830 2392.

The Researchers and their Universities
Professor Steve Iliffe (University College London) is responsible for the overall management of the EVIDEM programme and the project on GP education.
Dr James Warner (CNWL NHS Foundation Trust) will test exercise as a therapy for psychological symptoms.
Professor Vari Drennan (St. George's & Kingston University) is running the project on incontinence.
Professor Claire Goodman (University of Hertfordshire) is responsible for improving the quality of care at the end of life.
Professor Jill Manthorpe (Kings College London) will be measuring the impact of the Mental Capacity Act 2005.
Professor Martin Knapp (London School of Economics) is responsible for economic evaluation.
Mark Griffin (University College London) is responsible for research design and statistical analyses.
Dr. Greta Rait (University College London) is responsible for assembling the research cohort of 2,000 people.