Title: DETERMIND: DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their family carers
Funder: Economic and Social Research Council

Abstract: DETERMIND's overall objective is to establish a bespoke cohort of those newly diagnosed with dementia that is designed to test specific hypotheses covering five of the most important information gaps in dementia care. We will then take these data and formulate actions to overcome inequalities in care in an inclusive process using Theory of Change methodology with support from the Alzheimer's Society. It 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. Workstream 1: Recruitment and follow-up of the DETERMIND cohort Aim: to generate the infrastructure and data needed for DETERMIND by recruiting 900 people with dementia and their carers in the 3 months following diagnosis and following them up for 3 years obtaining high quality data on service use, costs and outcomes including quality of life. Workstream 2: Inequalities in use of dementia care Aim: to investigate the extent of inequalities in access to dementia care, unmet need for care, and barriers and facilitators to addressing inequalities and unmet needs. Workstream 3: Relationship between use and costs of services and outcomes Aim: to investigate relationships between use and costs of services and outcomes for people with dementia and carers. Workstream 4: Experience of self-funders of care Aim: to investigate the experience of people with dementia and their carers as self-funders of care and to compare this and their outcomes and costs with non-self-funders. Workstream 5: Understanding decision-making by people with dementia and carers Aim: to develop a deep, mechanistic understanding of the processes by which planning and decision-making occurs and the factors influencing that decision-making by people with dementia and carers Workstream 6: Effect of diagnostic stage and services on outcomes Aim: to investigate the impacts of earlier or later diagnosis and subsequent provision of post diagnostic treatment and care on quality of life and other outcomes for people with dementia and their carers. Workstream 7 - Programme management and Theory of Change guided research development, coordination and promotion of impact Aim: To develop, organise and deliver the WSs so they work together to generate data that answers critical questions and the strategy and actions needed to translate them into better systems and services for people with dementia and carers.

Lay abstract: Context of the research 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. There are emerging data that there are major inequalities in care for dementia driven by factors that include: 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 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. Aims and objectives Our 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): WS1: Recruitment and follow-up of the DETERMIND cohort - We will recruit 900 people with dementia and their carers in the 3 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. WS2: Inequalities in use of dementia care - We will investigate the extent of inequalities in access to dementia care, unmet need for care, impact of unmet need and barriers to addressing inequalities and unmet needs. WS3: Relationship between use and costs of services and outcomes - We will investigate relationships between use and costs of services and outcomes for people with dementia and carers. WS4: Experience of self-funders of care - We will investigate the experience of people with dementia and their family carers as self-funders of care and to compare this and their outcomes and costs with those the council funds. WS5: Understanding decision-making by people with dementia and carers - We will seek to understand the processes by which life-plan decision-making occurs and what influences decision-making by people with dementia and their carers. WS6: Effect of diagnostic stage and services on outcomes- We will investigate the impacts of earlier or later diagnosis and subsequent provision of post diagnostic treatment and care on quality of life and other outcomes for people with dementia and their carers. WS7 - Programme management and Theory of Change guided research development, coordination and promotion of impact - We will develop, organise and deliver the WSs so they work together to generate data that answers critical questions, and the strategy and actions needed to translate them into better systems and services for people with dementia and carers. Potential benefits During the life of the programme, first analysing baseline results, and then with the follow-up of the 900 people with dementia and their carers over 3 years, we will build an evidence base where services and practice are currently largely based on assertion or custom and practice. The 7 WSs will deliver novel, detailed data on inequalities in dementia care and what drives positive and negative outcomes and costs for people with dementia and carers, and factors that help or hinder living well with dementia.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: NEUROLOGICAL