For Dementia Action Week, WIPH is showcasing the work being undertaken by our new NIHR Dementia and Neurodegeneration Policy Research Unit (DeNPRU-QM) to improve understanding of how we diagnose and provide care and treatment to people living with dementia.
The Unit is co-directed by Claudia Cooper (Professor of Psychological Medicine) and Sube Banerjee (Pro-Vice Chancellor and Professor of Dementia at the University of Nottingham). DeNPRU-QM’s first programme of work will look at how services and the workforce can prepare for major anticipated advancements in the treatment and care of dementia and neurodegenerative diseases. The programme was developed in consultation with the Department of Health and Social Care, and focuses on the priorities of care integration, prevention, workforce, inequalities and social care.
Work will be undertaken across a range of different projects:
The unit also learns about dementia care through considering how other neurodegenerative diseases are treated. QMUL Professor of Neurology Ruth Dobson said: ‘The development of disease modifying therapies for dementia has the potential to drive significant service changes. We have seen the impact of this in MS and stroke, with substantial service reconfigurations. It is crucial to understand and plan such changes proactively in order to ensure best care for all people living with dementia, regardless of initial treatment availability and eligibility.’
Professor Claudia Cooper said: ‘The goal of DeNPRU-QM is to develop and deliver effective, equitable health and social care that will make England the best place in the world for people with dementia or a neurodegenerative disease to receive care and support, wherever they live and whatever their background. We want to use these surveys to identify where there is variation in how services are delivered. We plan to learn from best practice and also identify if there is unacceptable variation in the quality of care, between geographical areas or in the services delivered to minoritised groups, to work with stakeholders to understand why that might be.’
Sube Banerjee, co-director of DeNPRU-QM and Pro-Vice Chancellor and Professor of Dementia, at the University of Nottingham, said: ‘We are committed to generating answers to questions that really matter for people with dementia and neurodegenerative disorders and their families - answers that give policy-makers and health systems the information they need to improve services and care. There is so much more that needs to be done to support those affected by neurodegeneration and to improve brain health. The information generated from these surveys is just the start. With this and the wider programme of work by DENPRU-QM, we aim to improve the quality of care provided and the quality of life of those affected.’
Fiona Carragher, Director of Research and Influencing at Alzheimer’s Society said: ‘Dementia is the UK’s biggest killer, yet a third of people living with dementia don’t have a diagnosis, which means they’re not able to access care and support, or plan for the future. It’s an exciting time in dementia research, and the evidence gathering to be undertaken by the new DeNPRU research unit will be vital to build better, more inclusive services that meet the needs of people living with dementia and improve ongoing care.’
The DeNPRU-QM team includes collaborating researchers from Queen Mary University of London, University College London, University of Exeter, University of Nottingham, University of Liverpool, and University of York, as well as the Meri Yaadain CiC, Dementia UK, and the Neurological Alliance. The team also draws on the insights of an active and engaged lived experience group.