DETERMIND: Determinants of quality of life, care and costs, and consequences of inequalities in people with dementia and their family carers
DETERMIND is designed to address critical, fundamental, and as yet unanswered questions about inequalities, outcomes and costs following diagnosis with dementia.
This programme of work is led by Professor Sube Banerjee at Brighton and Sussex Medical School (BSMS) in collaboration with the London School of Economics and Political Science (LSE), King's College London (KCL), Newcastle University, University of York and University of Cambridge.
Dementia is one of the most common and serious disorders we face with over 800,000 people affected in the UK, costing £23 billion annually. Negative impacts on people living with dementia and their families are profound. There are emerging data suggesting major inequalities in care for people living with dementia, driven by factors that include: ethnicity, whether your care is self-funded or paid for by local councils, and whether you are diagnosed earlier or later in the illness.
The overall aim of DETERMIND is to explore and understand inequalities in dementia care and what drives good and bad quality of life, outcomes and costs for people living with dementia and their carers following diagnosis. We will investigate how outcomes and costs vary by content and time of diagnosis, individual circumstances, and with varying health and social care.
We will recruit 900 people with dementia and their carers in the three months following diagnosis and follow them up closely for three years. DETERMIND comprises seven complementary work streams which will deliver novel, detailed data on inequalities in dementia care and what drives positive and negative outcomes and costs for people living with dementia and their carers, and factors that help or hinder living well with dementia.
SPRU is leading the work stream (WS4) which focuses on self-funders. We will investigate the experience of people with dementia and their family carers as self-funders of care and compare these experiences, outcomes and costs with those of people who the council funds.