Empowering Better End of life Dementia Care (EMBED-Care Programme)

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.

Our Network for Excellence in Palliative Dementia Care links all beneficiaries though our website, knowledge exchange events and public lectures now and in the future, and enables our leverage of a step-change in care and societal attitudes on dying with dementia.

People with dementia: Our programme on understanding and improving care to maximise comfort and quality of life, to the end of life, has potential impact now, and for the 220,000 people predicted to die with dementia and palliative care needs each year by 2040. People with dementia will be actively involved in the design of our new intervention, shaping the care they receive, which will prioritise comfort and individual goals of care to ensure the right services in the right place at the right time. People with young onset and rapidly progressive prion dementia will benefit from better understanding of their needs. We will work with Dementia Engagement and Empowerment Groups outside London, spread through urban and rural locations throughout the UK, and National CJD and young onset dementia support groups.

Families, friends and carers of people with dementia often experience significant distress and grief, before and after the person with dementia dies. Improving comfort and QoL for the person with dementia will help carers with these challenges. Our co-designed intervention involves carers, empowering them to report symptoms and unmet needs, providing a greater sense of control.

Young people (15-25): population projections show young people will be increasingly affected by dementia, as relatives or carers, or eventually patients themselves, but their attitudes are often overlooked. We will engage them as co-creators of the research engagement strategy, giving them a rewarding opportunity to work at the interface of science and art.

Policy influencers: we drive evidence-based policymaking with regular policy labs and knowledge exchange, informed though our academic work and YouGov poll. We will review health and social care policy levers, guidelines and workforce capability, and how these should be realigned to optimise dementia palliative care. We will generate projections of future need for policymakers and provide 3rd sector organisations with evidence to lobby for better care.

Health and social care staff: there is limited skilled workforce capacity in dementia care, and a need for more integrated working, bringing together social, primary, palliative care and old age psychiatry. Staff will be actively involved in intervention co-design, ensuring optimal feasibility and acceptability for implementation in their setting. We include a match funded PhD studentship targeted at practitioners e.g. social worker. We will address workforce and training implications, ensuring staff are supported. They will benefit from a new intervention to improve care, and learning and development opportunities through innovative teaching, i.e. Project-ECHO tele-mentoring, to reach a large audience.

Academics: we expand social science research by improving theoretical understanding of palliative dementia care. Our cohort study on unmet needs and service use, is original, building knowledge and producing one of the largest datasets available for sharing. Our work on young onset and prion dementias is the first of its kind. Our data linkage increases capacity and innovates methods in big data research. We add knowledge on implementation and engagement from the outset. Findings will be shared with academics through seminars, conferences, academic papers, blogs and social media.

Early and mid-career researchers will gain skills to drive impact now and in the future. They are co-applicants, who will lead workstreams and participate in a programme of skills development in public engagement, policy and the 3rd sector. They will be mentored by senior researchers and develop national and international links through the NEPDC. PhD studentships build academic capacity.