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New research to drive down inequalities in dementia care

BSMS > About BSMS > News > New research to drive down inequalities in dementia care

New research to drive down inequalities in dementia care

A new £4.7m research programme aims to find out what is it that enables one family to live well with dementia and another with ostensibly the same illness and challenges to have very poor experiences. 

Brighton and Sussex Medical School (BSMS) will lead a national research network 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.

DETERMIND (DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers) 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 Newcastle University’s Institute of Ageing. 

Prof Banerjee said: “Our study will look at inequalities in dementia care and outcomes and what we can do to improve them.  We will have 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. 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.” 

Sussex patients invited to take part

Sussex patients receiving care for dementia, as well as their carers and families, are being invited to join the study, which opens in July 2019. 

Tanya Telling, Joint Director at the Centre for Dementia Studies and Deputy Director of Research and Development at Sussex Partnership NHS Foundation Trust, which will support the study, said: “Sussex Partnership is delighted to be involved in DETERMIND and to give our patients and their carers the chance to contribute towards these important research questions. 

“The Trust has a large portfolio of dementia research and most importantly a growing number of studies that are led by our own researchers, such as Professor Sube Banerjee, which ensures that research is focussed, relevant and most likely to impact on patient care and outcomes in our region. We very much look forward to seeing DETERMIND progress and its outcomes make a difference to patients and their families.”

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.