Roadmaps can help us all - learning from dementia By Dr Liz Philpots, Head of Research & Impact, AMRC Published: 22 February 2018 Alzheimer’s Society’s Roadmap for dementia prevention, diagnosis and care is a fabulous resource for the dementia community, but also holds some important insights for all research areas and shows that common problems require us to work together to develop solutions. This work is published in the International Journal of Geriatric Psychiatry and covered in the Guardian Health and Social Care Network. Dementia goals The dementia research roadmap has been developed by leading dementia clinicians and researchers, patients and other research funders with the aim of seeing research into dementia care, prevention and diagnosis on an equal footing with that focused on a cure. It offers 5 goals, with detailed recommendations, which funders are already planning how to take forward. Dr James Pickett, Head of Research at Alzheimer’s Society said: “The ambition to find a disease-modifying treatment for dementia by 2025 has had a catalytic impact on global collaboration and funding for biomedical research. We hope these additional goals will have the same impact for the other vital areas of dementia research and allow us to better align future research with national dementia strategies.” Goal 1: The prevention of future cases of dementia through increasing knowledge of risk and protective factors Goal 2: Maximising the benefits to people living with dementia and their families of seeking and receiving a diagnosis of dementia GOAL 3: The improvement in quality of life for people affected by dementia by promoting functional capabilities and independence while preventing and treating negative consequences of dementia GOAL 4: Enabling the dementia workforce to deliver improved practice by increasing knowledge and informing changes in practice and culture GOAL 5: Optimising quality and inclusivity of health and social care systems that support people affected by dementia Relevance to all But what makes this report relevant to all research funders is that it also outlines the barriers to this type of research and offers concrete actions that could help research into ALL diseases. The group of experts identified 10 areas for cross-cutting work. Some (like increasing available funding, and streamlining set-up processes) are areas where the UK has been working for some time. Others, like advancing PPI (so that involvement is easier for harder-to reach groups, like those with more advanced dementia, or from BAME communities) and stimulating the use of new research methods (like adaptive trials) have been examined by some organisations, but there has been no consistent cross-funder work. For research to truly be adopted into the health and care system, we need to increase involvement of stakeholders at all stages of research, including those providing care on the front line. We need to know about the practical insights and challenges that have to be overcome when delivering services. Our health service caters for everyone, and so must our research. We also need to make the findings of research available in a ‘digestible’ form. It should be available to all and understandable by all. And finally, we need to help researchers of all kinds to create networks and form multidisciplinary teams to tackle these challenging research areas. This report offers the olive branch to others looking to do the same. Act now The report contains a detailed set of actions that we can all take forward. There’s something for everyone. Some of my favourites are: Audit research grant holders to identify time lags in the launch of research. Work with other AMRC charities to gather the same information so we can compare across sectors to identify dementia-specific problems. Develop a framework for research in each type of setting, for example the NIHR ENRICH Network for research in care homes could be expanded to other settings and demographics. Create a platform to share case studies/examples with a spotlight on the methodology (rather than the outputs) of projects including barriers, challenges and limitations. Funders and researchers to collaborate on developing guidance to enable service providers to assess the quality of available evidence for an intervention before proceeding with implementation Foster or create research interest groups within practitioner networks to gather their ideas and needs for new research (examples include: care homes, homecare, assisted living and other housing providers, social workers). Single-disease funders to increase mechanisms for funding co- and multi-morbidity studies across funders. I hope that AMRC charities across the disease areas will agree that these are key actions that will support ALL research -but we need to work together to make it happen…… where shall we start on this road?