Abstract

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. DETERMIND is designed to generate findings that will lead to substantial improvement in quality of life for its primary beneficiaries, people with dementia and their carers. It will do this by generating unique new information on inequalities in dementia care, the outcomes and effects of diagnostic and post-diagnostic care, and on how that care is accessed, so that better services can be developed and delivered nationwide. Our meaningful involvement of people with dementia and their carers at all stages in the research will mean the programme and its impact will be co-produced with its primary beneficiaries. This will maximise the magnitude, speed and wide-ranging relevance of impact.

Further beneficiaries are those that provide, plan and purchase services for people with dementia. There is a real hunger for good quality information on how best to provide services, and on what people with dementia and their carers can do to live well with dementia. We will therefore work continuously throughout the programme to interpret and communicate emerging findings and to discuss implications with all potential beneficiaries Our communication will be framed and organised by our workstream structure: inequalities; outcomes and costs; effect of funder-type; decision-making; and stage at diagnosis and differing post-diagnostic care. During the life of the programme, first analysing baseline data, and then with the sequential delivery of follow-up quantitative data and the results of the embedded workstreams analyses and qualitative studies, we will build an evidence base where services and practice are currently largely based on assertion or custom and practice.

Professional staff will be key beneficiaries of our study. We will convey our findings to the wide range of staff who work with those with dementia. These will include: GPs and practice staff, nurses and therapy staff in community health services, social care staff including those working in care homes and home-based care, staff who support family carers, hospital medical, nursing and other staff, and staff and volunteers working in other relevant services such as housing and community organisations. Findings on how people with dementia and their carers experience diagnosis and post-diagnostic support, their views on the quality of care they receive compared to needs, and their comments on gaps in information, care and support service will be very valuable for professionals. Such increased understanding of the lived experiences of people with dementia will allow them to improve the quality and equity of the care they provide.

We will also promote our findings to health and social care commissioners and service providers including: CCGs, local authorities, NHS Trusts, social care providers and providers of supported housing, e.g. to feed into STPs. We will produce outcomes-based evidence on inequalities in service access and funding arrangements, and how support can be improved through different post-diagnostic care pathways, and the challenges of doing so. Our findings will highlight what is working well in terms of positive outcomes for people with dementia and carers, what works less well, what needs to be improved and, by highlighting successful diagnostic and post-diagnostic care pathways, how improvements could be made and with what resource consequences.

Finally, our study is designed to produce evidence to inform national and local policy discussion. Our findings on how care pathways could be improved will be valuable evidence for future national and international dementia strategy and carer strategy updates, and for local implementation. We will ensure this evidence reaches DHSC, NHS England and other ALBs, the LGA, ADASS, and other national stakeholder agencies through our existing close links with them. The Alzheimer’s Society is a key partner on this application and we will work with them to enable maximum impact and benefit from this programme.

Aims

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.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.