WIREDGOV

A comprehensive online database featuring the latest scientific evidence on what works in dementia care and treatment has been developed by the researchers at the Personal Social Services Research Unit, London School of Economics and Political Science (PSSRU at LSE).

Launched yesterday, Wednesday 3 August, the toolkit devised by Adelina Comas-Herrera, David McDaid, Professor Martin Knapp and colleagues, is the first of its kind globally, and is funded by the Economic and Social Research Council (ESRC). The Dementia Evidence Toolkit brings together more than 3,000 journal articles and 700 reviews of research studies in one place. 

The aim is to make all this information publicly available in a form that is clear and easy to understand for dementia patients, their families and unpaid carers as well as for staff working in health and social care. It will also benefit academics and those involved in decision-making both locally and nationally.   

Dementia is the fastest growing major cause of health-related disability across the world, and the health, social and economic impacts are increasing because of an ageing population. There are around 850,000 people in the UK with the condition, a figure expected to rise to 2 million by 2051. There are currently no cures for dementia which is associated with ongoing cognitive decline such as memory loss, problems with judgement and often some behavioural issues. Instead, the focus for healthcare services is on slowing down dementia progression using different care approaches. 

Professor Knapp, Director of the PSSRU at LSE, NIHR Senior Investigator and lead investigator for the MODEM project, says this new toolkit will help those involved in developing services and treatments for both people living with dementia and their carers. By searching the online database, they will be able to make informed decisions on which services and treatments are effective and how much they cost. It will enable them to check how strong the evidence is for a particular treatment or to identify how much more research is needed. 

He said: “As the economic impact of dementia grows, it’s especially important to give commissioners and providers the information that helps them use public funds to the best effect. In that way we can perhaps improve the lives both of people with dementia and of their carers.

“Our toolkit draws evidence together in one place, showing which interventions work well and at what cost.”

Professor Knapp and fellow researchers based the web tool on a systematic review of scientific literature on dementia care, treatment and support. This was carried out as part of the Modelling the Outcome and Cost Impacts of Interventions for Dementia (MODEM) project which began in March 2014. MODEM is funded by the ESRC and the National Institute for Health Research (NIHR) as part of an initiative to add to our understanding of dementia and improve the quality of life of those with dementia and their carers.

The articles and reviews featured on the database are all coded according to the type of dementia, the care setting, the type of outcomes measured and the authors/country of study. The researchers have also coded the type of intervention used including music therapy, acute and end-of-life care, and risk-reduction such as preventing falls among dementia patients.

The scientific evidence on the effectiveness of many of these interventions is summarised in plain English. Each summary provides a rating for the intervention on its success, its cost-effectiveness and the strength of the evidence. The research team consulted people living with dementia, carers and care professionals as well health and social commissioners to ensure the interventions chosen were those of most interest and value to this group.

The next step now is for the LSE team to continue adding to and updating the toolkit.

“There’s this perception that the cognitive decline associated with dementia is benign or even slightly humorous,” says Professor Knapp. “The reality is people will often have behavioural issues and this impacts considerably on families - people talk of their loved one’s personality changing entirely. We hope the toolkit helps improve understanding of how people can continue to live well - and as well as possible - with dementia today.”

Further information

For further information, contact:

• Professor Martin Knapp
  Email: m.knapp@lse.ac.uk
  Telephone 020 7955 6225

Notes for editors

1. This release is based on the Modelling the Outcome and Cost Impacts of Interventions for Dementia (MODEM) project, funded by the ESRC and NIHR and carried out by Professor Martin Knapp at the PSSRU at LSE.
2. Methodology: The project involved systematic analysis of scientific literature on interventions for the care, treatment and support for people with dementia and carers. The review covered the medical and social science databases Medline, Psychinfo, CINAHL, Social Care Online and the International Bibliography of the Social Sciences. The period covered was 1 January 2009 to 30 June 2015. Researchers have produced the summaries according to a protocol and standard quality assessment tools and extraction forms to ensure consistency.
3. View the Dementia Evidence Toolkit online
4. The Economic and Social Research Council (ESRC) is the UK’s largest funder of research on the social and economic questions facing us today. It supports the development and training of the UK’s future social scientists and also funds major studies that provide the infrastructure for research. ESRC-funded research informs policymakers and practitioners and helps make businesses, voluntary bodies and other organisations more effective. The ESRC also works collaboratively with six other UK research councils and Innovate UK to fund cross-disciplinary research and innovation addressing major societal challenges. The ESRC is an independent organisation, established by Royal Charter in 1965, and funded mainly by the Government.
5. The Personal Social Services Research Unit at LSE is the foremost social care and mental health economics research group in the UK and one of the leading such groups internationally. Its mission is to conduct high-quality policy analysis, evaluation and research to inform policy, practice and theory, and is regularly commended for its 'exceptional track record in adult social care research' and 'significant contribution to strengthening the evidence-base for policymaking in key areas'. Since 2004 alone, PSSRU has had number of research awards totalling over £38 million, and produced over 600 peer-review journal papers, books and reports. Research awards during the last 5 years include formal collaborations with approximately 40 other universities/institutes (UK and abroad). PSSRU has a large and growing body of relevant research which has substantial impact on UK and international policy discussion. In 2009 LSE Health and Social Care (of which PSSRU at LSE is a substantial part) was awarded a Queen's Anniversary Prize for Higher and Further Education for 'applying research to the advancement of global health and social care policy'.
6. The National Institute for Health Research (NIHR) is funded by the Department of Health to improve the health and wealth of the nation through research. The NIHR is the research arm of the NHS. Since its establishment in April 2006, the NIHR has transformed research in the NHS. It has increased the volume of applied health research for the benefit of patients and the public, driven faster translation of basic science discoveries into tangible benefits for patients and the economy, and developed and supported the people who conduct and contribute to applied health research. The NIHR plays a key role in the Government’s strategy for economic growth, attracting investment by the life-sciences industries through its world-class infrastructure for health research. Together, the NIHR people, programmes, centres of excellence and systems represent the most integrated health research system in the world.