Wednesday 9 January 2019

New research to drive down inequalities in dementia care

Newcastle University is part of a new £4.7m research programme which aims to find out what causes inequalities in dementia care and experiences.

Newcastle University are part of a national research network, created to address critical, fundamental, and as yet unanswered questions about inequalities, outcomes and costs following diagnosis with dementia. These answers are needed to improve the quality of care, and therefore the quality of life, of those with dementia and their carers.

Brighton and Sussex Medical School (BSMS) will lead the project; DETERMIND (DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers). This is one of four major research projects funded by the Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR), as part of a £15 million initiative on research to improve the lives of people living with dementia.

To deliver the programme Principal Investigator Professor Sube Banerjee, an old age psychiatrist and Professor of Dementia at the Centre for Dementia Studies at BSMS, has brought together a strong, experienced, multidisciplinary team. This combines clinical research in dementia and the NHS in Sussex, Newcastle, and south London, with the social and economic research expertise of the Personal Social Services Research Unit at the London School of Economics and the Social Policy Research Unit at the University of York, epidemiology and public health at the Institute of Public Health at the University of Cambridge and King’s College London, experimental and social psychology at the University of Sussex, and primary care and ageing at the Newcastle University Institute for Ageing.

Newcastle University are a vital component of the DETERMIND study, recruiting 300 of the 900 participants who have been newly diagnosed with dementia and following them up for three years. This activity will be led by Alan Thomas, Professor of Old Age Psychiatry and Director of Brains for Dementia Research – a world-class brain tissue resource hosted at Newcastle University. Professor Thomas is supported by the NIHR Newcastle Biomedical Research Centre (BRC) dementia theme for a number of projects and has supervised several BRC-funded candidates in their work. Dame Louise Robinson, Professor of Primary Care in Ageing and Director of the Newcastle University Institute for Ageing will contribute her expertise to the project too.

Professor Alan Thomas commented: “We’re delighted to be working with BSMS on this project. It is crucial we understand the current inequalities in dementia care and outcomes so we learn how to improve them”. 

The project has a unique focus on decision-making, how care is funded, people with dementia of black Caribbean and South Asian heritage, the older LGBTQ+ population, and the benefits and harms of earlier and later diagnosis of dementia.

Professor Thomas added: “We aim to find out which groups have better or worse outcomes following diagnosis of dementia and why there are inequalities in care and outcomes. What we learn from the experiences of people with dementia and their carers will be used to deliver care and support that maximises quality of life for all people with dementia.”

Understanding inequalities in dementia

Dementia is one of the most common and serious disorders we face with over 800,000 affected in the UK, costing £23 billion annually. Negative impacts on those with dementia and their families are profound, and an estimated 670,000 people in the UK are acting as primary carers for people with dementia.  There are major inequalities in care for dementia with key factors including: local service provision, ethnicity, whether your care is self-funded or paid for by local authorities, and whether you are diagnosed earlier or later in the illness.

DETERMIND will focus on identifying and understanding factors that generate unequal access and experiences, leading to inequalities in care and inequities in outcome in the three years following diagnosis. To do this they will recruit a large (n=900) cohort of people newly diagnosed with dementia and their carers and follow them closely for three years. DETERMIND will generate definitive data and use these to drive activity to address inequities in access and outcomes.