Sussex Partnership NHS Foundation Trust is appealing for newly diagnosed dementia patients to volunteer to take part in a new national study. The DETERMIND study, led by Brighton and Sussex Medical School (BSMS), will follow 900 people over three years to look at existing inequalities in dementia care and outcomes and what we can do to improve them.
Participants will have received a dementia diagnosis within the last six months. As part of the study, they will be interviewed by a research worker for two hours after 12, 24 and 36 months. If they have a carer, the research worker will also interview the carer. Researchers will be looking for information on service use, costs and outcomes, including quality of life. In addition to the Sussex interviews, researchers will also follow patients in south east London and Newcastle/ north east England.
The study will deliberately oversample black African Caribbean and South Asian populations in Sussex and south London as well as lesbian, gay, bisexual, transgender and queer (LGBTQ+) groups in Brighton.
Dr Ben Hicks, Research Fellow at the Centre for Dementia Studies said: “It’s a great privilege to be coordinating such a large and novel project, funded by two prestigious research bodies and supported by top academic institutes. I know it will have a great impact on UK dementia care policy and enhance the lives of people currently living with dementia and their carers, as well as those hundreds of thousands who will be affected in the future.”
There are around 800,000 people living with dementia in the UK and another 670,000 acting as primary carers for people with dementia. Dementia costs the UK economy £23 billion. The DETERMIND study will combine clinical research in dementia with the social and economic research expertise of the Personal Social Services Research Unit at the London School of Economics.
Funded by the Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR), the £4.7 million research programme is part of a broader £15 million initiative on research to improve the lives of people living with dementia.
Over the three years, the study will aim to establish which groups have better or worse outcomes following diagnosis of dementia and why there are inequalities in care and outcomes. It will focus on identifying and understanding factors that generate unequal access and experiences that lead to inequalities in care and associated inequalities in outcomes. The results will be used to deliver care and support that maximises quality of life for all.
Tanya Telling, Joint Director at the Centre for Dementia Studies and Deputy Director of Research and development at Sussex Partnership said: “This study gives our patients and their carers the chance to contribute towards these important research questions. The Trust has a large portfolio of dementia research. A growing number of studies are led by our own researchers, 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 our patients and their families.”