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.

Background: If an older relative with dementia with suspected COVID-19 becomes unwell quickly, family carers and the person with dementia may have to make rapid decisions. Decisions may concern hospital admission or whether to receive care at home, social distancing, and which treatments the person may or may not wish to receive. This can include very difficult decisions such as whether the person wishes to be resuscitated or have other potentially traumatic treatments. These decisions will have an impact on the emotional wellbeing of both the family and person with dementia. Aim: We will produce an evidence-based decision tool to support family carers and people with dementia to make these difficult decisions during COVID-19. Methods: This project will consist of three phases: 1) We will identify key factors influencing the choice of place of death in older people, conducting a rapid review of the evidence; 2) We will review and analyse common challenges and decisions family carers of people with dementia are making in relation to COVID-19, from the Alzheimer's Society online community forum. We will also explore concerns of people living with dementia during COVID-19 reported on the forum and; 3) Together with people living with dementia, family carers and health care professionals, we will develop a decision tool for family carers and people with dementia to use when making difficult decisions. Dissemination and Impact: The tool will provide carers with a clear framework to help them to make decisions and ease feelings of guilt, burden, stress, strain and anxiety. We will work closely with Marie Curie Charity, Alzheimer's Society and British Geriatrics Society to disseminate the tool and our findings to the people who may benefit from using them.

The proposed project will focus on the evolution of public memorialisation in response to the COVID-19 pandemic. Partnering with the Marie Curie charity and its campaign for a national Day of Reflection in 2021, it will draw academic expertise on civic memorialisation together with stakeholder organisations (charities, faith groups, and public bodies) to examine two core issues. First, how new practices may be beneficially informed by scholarship on British public memorialisation of traumas in the 20th century. Second, how varied stakeholder opinions on the format, organisation, and narratives of a national Day of Reflection on COVID-19 can be critically integrated into the development of the memorialisation activities. In this way the project will look to both past precedents and the complexities of the present, building up an analytical framework that impactfully contributes to social responses to the pandemic. In undertaking this work the project will consider how memorialisation navigates several key relationships: between 'top down' state-led memorialisation and local agency; between memorialisation as a force for unity and the need to reflect social diversity; between mourning loss and celebrating achievements during the crisis; between varied forms of memorial ritual; between national self-validation and self-critical reflection. Outputs from the project will include a series of workshops that draw together memory studies scholars and non-HEI participants, an open-access written report for Marie Curie and other stakeholders that informs preparations for the national Day of Reflection, and a major conference paper and follow-up publication.

In the UK about 820,000 people live with dementia with numbers increasing rapidly as the population ages. The Government's "Challenge on Dementia" aims to drive improvements in health and care, create dementia friendly communities and improve research. Responding to this challenge, our MARQUE programme "Managing Agitation and Raising Quality of Life", aims to increase knowledge about dementia, agitation and personhood. We will use the programme to: -develop our theoretical knowledge of dementia, agitation, how people with dementia and their carers experience these and their relationship to citizenship and personhood. -reduce agitation in people with moderate and severe dementia and thus increase quality of life, through the known link between agitation and quality of life. -mentor existing and train new researchers, to build a legacy of trained dementia researchers. Agitation is common, occurring in about 50% of people with moderate or severe dementia every month, is distressing for them and for those around them. The symptoms include restlessness, pacing, shouting or even verbal or physical aggression and signify unmet need. The person with dementia may be in pain, hungry, thirsty, needing comfort or bored but unable to know or explain this. Our group (including Shirley Nurock, an Alzheimer's Society carer) has completed a funded literature review on interventions to reduce agitation. Our vision is to build on this evidence, advancing knowledge, including how to effectively implement findings to improve quality of life for those with dementia. It is a bold and ambitious proposal by a multi-professional team, our family carer partners and participating national and international groups. The team, who have previously worked together successfully, comprise social sciences, medicine, nursing and psychology. A DeNDRoN PPI focus group advised on and approved our proposal. We are partnered by Alzheimer's Society who are leading PPI, care home groups and voluntary and parliamentary groups. The research will involve observing and interviewing a wide range of people with dementia and those who care for them at home, in care homes and in hospitals (including end of life) in order to better understand how agitation is currently managed, barriers to good practice and how care could be improved. We will use this information (with our literature review findings) to develop, test and implement a manual to train staff about how best to reduce agitation and improve quality of life in care homes. It will be tested in a randomised controlled trial in 14 care homes. Our vision is to make this as central to care as good eating and hygiene. Our programme at home will lead to a pilot home intervention, including massage, found to be effective in our review. In addition, we will further develop another manual, to improve people with dementia's end of life for, including "terminal agitation" (comprising restlessness, anxiety, sleeplessness and shortness of breath around the time of dying). This manual will be piloted in four nursing homes (and a control home) and staff, family and residents asked whether it is helpful, practical and feasible. Our programme lasts 5 years but we expect carers and people with dementia to start to benefit from 2 years as we begin testing. It will improve our understanding of current practice and the challenges for family and paid carers. We will have programmes to put into practice across the UK to help manage agitation, including at home, in care homes and at the end of life. We will know what works, is cost effective and how to implement. This will improve quality of life for people with dementia and their carers wherever they live and will help guide research and practice. Our partners will then work with us to ensure national publicity and implementation. This will include incorporation into care home and hospital inductions and feedback to Care Quality Commission as a potential new care standard.

Abstracts are not currently available in GtR for all funded research. This is normally because the abstract was not required at the time of proposal submission, but may be because it included sensitive information such as personal details.