The aims of the Toolkit are to provide easy access to scientific evidence on dementia care and treatment, and to provide clear and rigorous information to people living with dementia, family and other unpaid carers, staff working in the health and social care sectors, local and strategic decision-makers and researchers.
The Dementia Evidence Toolkit contains:
- A searchable bibliographic database of empirical papers and systematic reviews on interventions for the treatment, care and support of people with dementia and carers.
- Plain-language summaries of the evidence on the effectiveness (and cost-effectiveness) of key care and treatment interventions.
The bibliographic database
The searchable database of scientific evidence was produced while carrying out a systematic mapping of the evidence on dementia interventions for the MODEM project. To date this has involved examining more than 3,000 empirical journal articles and over 700 systematic reviews, obtained by searching key bibliographic databases (Medline, Psychinfo, CINAHL, Social Care Online and IBSS) for articles published between January 2009 and June 2015. The abstract of each article has been screened to ensure that only those that are relevant are included. (The main criteria for inclusion are a paper or review concerns dementia and is about one or more evaluations of interventions.)
The articles have been coded according to type of dementia (including mild cognitive impairment), care setting, type of outcomes measured, type of intervention and country of study and authors.
Evidence summaries
We have produced plain-language summaries of the research evidence on the effectiveness and cost-effectiveness of key dementia care and treatment interventions. The summaries have been produced according to a protocol, using standard quality assessment tools and extraction forms (available on request), to ensure consistency. Where available, the summaries also include the views of people who have experienced some of the interventions, in some cases using audio or video.
The summaries include a table that draws out the key findings from each of the articles reviewed, giving details on effectiveness and cost-effectiveness, the strength of the evidence, and whether the intervention has already been implemented in the UK. The table also includes an overall evidence assessment for the intervention, based on all the studies included in the summary. The tables use symbols to illustrate the findings, a key to the symbols can be found here:
Consultations with commissioners, people with dementia, unpaid carers and care professionals have shaped the contents, style and language used in the summaries. We also sought their views about the key interventions that we should prioritise.
Our aim has been to use language in accordance with the Dementia Engagement and Empowerment Project (DEEP) guidelines on language about dementia.
The summaries can be read directly from the website or downloaded as pdfs. All summaries have the following sections:
- Short introduction and key points
- What is [intervention name] – the treatment, therapy, type of care, etc?
- Why is it important?
- Is it effective?
- Is it cost-effective?
- What do people say?
- Find out more
- Evidence table
The Team:
Research staff at the Personal Social Services Research Unit, London School of Economics and Political Science: Adelina Comas-Herrera, David McDaid, A-La Park, Bayo Adelaja, Daniel Lombard, Klara Lorenz, Josie Dixon, Martin Knapp
Research involvement management, communications and much more: Margaret Dangoor, Anji Mehta
Website and database design: Fergus Bisset
Editor: Helen Hayes
Next steps:
The Toolkit was originally developed in order to make publicly available a systematic mapping of the literature on what works in dementia care and treatment carried out as part of the MODEM project. The team are currently looking for funding to keep the bibliographic database updated and to continue producing evidence summaries.
We would like to thank:
This Toolkit has been developed with additional funding from the Economic and Social Research Council (ESRC) building on a systematic literature review carried out as part of the MODEM (Modelling the Outcome and Cost Impacts of Interventions for Dementia) project. The MODEM project is funded by the ESRC and the National Institute for Health Research.
The team would like to thank the following people and institutions for their invaluable help and advice:
Reinhart Guss
Professor Kathryn Hyer
Professor Gill Livingston
The MODEM project reference group of users and carers
The MODEM project advisory group
Strategic Clinical Network – Dementia and End of Life