Title: Empowering Better End of life Dementia Care (EMBED-Care Programme)
Funder: Economic and Social Research Council

Abstract: This project will deliver a step-change in the way we care for people with dementia, through timely person-centred care and improved outcomes, towards end of life. We will develop new knowledge and pilot an innovative intervention of palliative dementia care to empower people with dementia of all ages, carers and staff, to identify and act upon changing physical, psychosocial and spiritual needs, addressing these across care settings and transitions. We will leverage sustained improvement in care and societal attitudes on dying with dementia by creating a Network for Excellence in Palliative Dementia Care (NEPDC) with UK and international partners and engage the public and policy by combining art and science and stimulating public debate. We will involve people affected by dementia, carers, staff, researchers, third sector and policy makers to stimulate a public discourse on dying with dementia, and provide a platform for workforce development, research, education, implementation, policy and public engagement. The NEPDC will facilitate input from wide audiences into design and delivery of this and future research, and supports dissemination and implementation of research outputs to delivery our six interlinked workstreams (WS). We will: 1. Synthesise health and social care policy and guidance to understand context, inequalities, workforce and levers for change. We will review intervention studies in dementia and palliative care to understand components, mechanisms of action, outcomes and use of technology in care delivery. This will form a conceptual framework of integrated palliative dementia care to underpin the EMBED-care intervention design. This will inform our research methods to generate knowledge to refine the EMBED-care intervention, and understand how the intervention will alter social systems, to deliver and sustain changes in service and improve outcomes (WS1). 2. Develop new knowledge on current service use, care transitions and inequalities in care using linked datasets. To put our intervention into context, we will project future population need, and the workforce required to deliver good care, using data from electronic patient records and large statistical datasets. This will provide the evidence and context for our intervention to improve palliative dementia care (WS2). 3. Describe comfort, care transitions, QoL, formal and informal care and societal costs in longitudinal mixed method cohort study. To inform complex intervention design and implementation, we require in-depth understanding of palliative care need in people with dementia (including young onset and prion dementias) over the last 1-2 years of life, how carers meet these needs, and the impact caring has on them. This data is new and not available elsewhere (WS3). 4. Synthesise evidence and knowledge generated from WS1-3, to provide a foundation and inform recommendations and components for our new intervention. A knowledge to action framework (KTA) will enable us to convert our understanding of palliative needs and possible responses into a matrix design that is relatively straightforward for carers, staff, and people with dementia to assess needs and identify possible interventions (WS4). 5. Design the novel EMBED-Care intervention package. This will build on our IPOS-Dem tool and the KTA in WS4 to aid comprehensive assessment and improve communication within and across settings, and a heuristic-based decision aid with training/support packages to facilitate use in practice (WS5). 6. Test the EMBED-Care intervention in community settings, and pilot methods for a full cluster randomised controlled trial (cRCT). We will refine implementation, staff training, and workforce support, and undertake a pilot trial. This will test trial methods (recruitment, randomisation, potential outcomes for effectiveness, economic evaluation, implementation requirements) and indicate whether a full cRCT is warranted (WS6).

Lay abstract: We will generate a step-change in how care is provided for people with dementia. We will spark public conversation on dying with dementia, engage the public in our work by combining art and science and develop a new tool to maximise quality of life (QoL) and meet individual needs, regardless of age or type of dementia. One in three of us will die with dementia. It is the commonest cause of death in the UK. By 2040, 220,000 people will die with dementia each year. Distressing symptoms like pain and agitation are common. Policymakers and managers lack solutions to improve delivery of holistic person-centred care and information to plan future services. Access to good care for people with dementia towards end of life is highly unequal. First, we create a network of collaborators, clinicians, policy makers, patients and families, linking to the UK Dementia Research Institute. This network will aid our engagement and dissemination at all stages and provide a platform for our research. Our research comprises 6 projects (called workstreams, WS). We use these to build, develop and test a model of integrated palliative dementia care, meaning palliative care is a vital part of dementia care across services. WS1-understanding policy and developing a programme framework. Palliative care aims to maximise QoL through careful assessment and person-centred care. We will review the literature to develop a framework of palliative dementia care. This helps us choose study outcomes and analyse data (WS2-4), and measure if our intervention makes a difference (WS5-6). We will review if it meets the needs of people affected by dementia, and how well it supports palliative dementia care, continuity of care and maximised comfort. We will build a case to inform policymakers what staff, skills and types of care are needed in the future. WS2-understanding inequality, current and future population need. We will use data collected routinely as part of clinical care, linked across hospital and home to understand when, why and how often people move between care settings. Results will help plan services, direct policy and inform public opinion. Combined with WS1 data, we will project future need to build a case for better care. WS3-unmet needs and care provision in dementia towards the end of life. We will follow people with dementia who may be nearing end of life and their carers for 9 months, checking them every 3 months for distressing symptoms, unmet health, psychological or social needs and services used. This will tailor our intervention in WS5 to what is important to the person and those close to them. We include people with young onset and prion dementias and their carers to understand these neglected groups. WS4-bringing our findings together to design the intervention. We will review findings from WS1-3 to compile a decision-making matrix that helps patients, carers and health care workers match care needs to palliative treatments. We will combine this matrix with the Integrated Palliative Outcome for Dementia (IPOS-Dem) to support staff to identify health and social needs, and a tool to aid decision-making for staff and carers to provide the right care, at the right time in the right place. This will form the basis for our EMBED-Care intervention designed in WS5. WS5-co-design of a new model of palliative dementia care. The intervention will empower staff and carers to assess and monitor needs and concerns, and support decision making to manage distressing symptoms by providing the right care. It will maximise comfort and bridge moves between settings, providing seamless care. It is person-centered and tailored to individual goals of care. We will develop training packages for staff, and work with a technology company to enable remote monitoring. WS6-testing the new model of care. We will check how well this works, using paper and online system, across care homes and at home to ensure it is practical, feasible and useful.

Research activity codes: 7.2 END OF LIFE CARE
Health categories: NEUROLOGICAL