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25 Mar

Dementia Resources are available online to help patients, carers and healthcare workers

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).

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 http://toolkit.modem-dementia.org.uk/ 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 Resources for patients and carers

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.

Dementia Resources for patients and 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.

Dementia Resources for patients and carers

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 LSE team will 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 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.”

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