DETERMIND
Research type
Research Study
Full title
Determinants of quality of life, care and costs, and consequences of inequalities in people with dementia and their carers
IRAS ID
261263
Contact name
Sube Banerjee
Contact email
Sponsor organisation
University of Sussex
Duration of Study in the UK
4 years, 2 months, 30 days
Research summary
Dementia is one of the most common and serious disorders we face with over 800,000 affected in the UK, costing £23billion annually. Negative impacts on those with dementia and their families are profound. Evidence has emerged of major inequalities in care for dementia driven by factors including: ethnicity, whether your care is self-funded or paid for by local authorities, and whether you are diagnosed earlier or later. DETERMIND is designed 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.\n\nOur overall aim is to explore and understand inequalities in dementia care and what drives good and bad quality of life, outcomes and costs for people with dementia and their carers following diagnosis. We do this to identify things that we can change to improve outcomes for them. We will investigate how outcomes and costs vary by content and time of diagnosis, individual circumstances, and with varying health and social care. To do this we have designed a programme of research with 7 complementary workstreams (WS):\nWS1: Recruitment and follow-up of the DETERMIND cohort - We will recruit 900 people with dementia and their carers in the 6 months following diagnosis and follow them up closely for 3 years obtaining high quality data on service use, costs and outcomes including quality of life.\nWS2: Inequalities in use of dementia care \nWS3: Relationship between use and costs of services and outcomes\nWS4: Experience of self-funders of care\nWS5: Understanding decision-making by people with dementia and carers\nWS6: Effect of diagnostic stage and services on outcomes\nWS7: Programme management and guided research development, coordination and promotion of impact. [COVID-19 amendment 11/06/2020; People with dementia are at high risk of adverse outcomes from COVID-19 and may also be adversely affected by the steps taken by society to control the spread of the infection. They have difficulty remembering and understanding restrictions and precautions put in place to protect them and others, and may be distressed that non-resident family and social networks are compromised. In addition, there is currently reduced access to many formal care services. This may cause strain for people with dementia and co resident and non-co-resident family carers, particularly those with a recent diagnosis who are attempting to come to terms with living with dementia and navigating the complex support landscape. We currently have few empirical data with which to help us to formulate how best to support them. We will address this gap by including a nested sub-study (DETERMIND C-19) within our existing DETERMIND programme of research in order to understand the impact of the pandemic on people with dementia and their carers and how these experiences may differ for different populations.\n\n
REC name
London - Brighton & Sussex Research Ethics Committee
REC reference
19/LO/0528
Date of REC Opinion
1 Jul 2019
REC opinion
Further Information Favourable Opinion