One in three people in the UK will die with dementia, yet the care they receive at the end of life is often fragmented, unequal, and poorly managed. This matters because dementia is now the most common cause of death in the UK, and by 2040, 220,000 people will die with it each year. Distressing symptoms like pain and agitation are widespread, but policymakers lack the data and tools to improve care. Access to good palliative care for people with dementia is highly unequal, and neglected groups—such as those with young-onset or prion dementias—are often overlooked. The EMBED-Care programme will build a new model of integrated palliative dementia care. Researchers will analyse routine clinical data to map how people move between care settings, follow patients and carers over nine months to identify unmet needs, and co-design a decision-making tool that matches care to individual goals. The intervention will be tested in care homes and at home. If successful, it will give staff and families a practical system to assess symptoms, monitor needs remotely, and provide seamless, person-centred care—reducing suffering and helping planners allocate resources more equitably.
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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.
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