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

我们将改变为痴呆症患者提供护理的方式。我们将引发公众对痴呆症死亡的讨论，通过结合艺术和科学让公众参与我们的工作，并开发一种新的工具，以最大限度地提高生活质量(QOL)，满足不同年龄或类型的痴呆症患者的个人需求。我们中三分之一的人会死于痴呆症。这是英国最常见的死因。到2040年，每年将有22万人死于痴呆症。疼痛和烦躁等令人痛苦的症状很常见。政策制定者和管理人员缺乏改善整体以人为本的护理和信息的提供以规划未来服务的解决方案。痴呆症患者在临终前获得良好护理的机会是非常不平等的。首先，我们创建了一个由合作者、临床医生、政策制定者、患者和家庭组成的网络，并与英国痴呆症研究所建立了联系。这个网络将在所有阶段帮助我们的参与和传播，并为我们的研究提供一个平台。我们的研究包括6个项目(称为工作流，WS)。我们使用这些来建立、开发和测试综合姑息治疗痴呆症护理的模型，这意味着姑息治疗是跨服务的痴呆症护理的重要组成部分。WS1-理解政策和制定方案框架。姑息治疗旨在通过仔细评估和以人为本的护理来最大限度地提高生活质量。我们将回顾文献以开发姑息性痴呆症护理的框架。这有助于我们选择研究结果和分析数据(WS2-4)，并衡量我们的干预是否产生了影响(WS5-6)。我们将审查它是否满足受痴呆症影响的人的需求，以及它对姑息性痴呆症护理、连续性护理和最大限度舒适度的支持程度。我们将建立一个案例，告诉政策制定者未来需要哪些工作人员、技能和护理类型。WS2-了解不平等、当前和未来的人口需求。我们将使用常规收集的数据作为临床护理的一部分，跨医院和家庭联系起来，以了解人们何时、为什么以及多长时间在护理环境之间移动。结果将有助于规划服务、指导政策和告知公众舆论。结合WS1的数据，我们将预测未来需要建立一个更好的护理案例。WS3-痴呆症的未得到满足的需求和接近生命末期的护理提供。我们将对可能接近生命末期的痴呆症患者和他们的照顾者进行9个月的跟踪，每3个月检查他们的痛苦症状、未得到满足的健康、心理或社会需求和使用的服务。这将使我们在WS5中的干预针对对个人和他们亲近的人来说是重要的。我们包括了年轻发病的普恩痴呆症患者和他们的照顾者，以了解这些被忽视的群体。WS4-将我们的发现结合在一起来设计干预措施。我们将审查WS1-3的研究结果，以编制一个决策矩阵，帮助患者、护理人员和卫生保健工作者将护理需求与姑息治疗相匹配。我们将把这一矩阵与痴呆症综合缓解结局(IPOS-DEM)结合起来，以支持工作人员确定健康和社会需求，并成为帮助工作人员和照顾者在正确的时间、正确的地点提供正确护理的决策工具。这将形成我们在WS5中设计的嵌入护理干预的基础。WS5-共同设计一种新的姑息性痴呆症护理模式。干预将使工作人员和照顾者能够评估和监测需求和关切，并支持决策，通过提供适当的护理来管理令人痛苦的症状。它将最大限度地提高舒适性，并在不同环境之间搭建桥梁，提供无缝护理。它是以人为中心的，并根据个人护理目标量身定做。我们将为员工开发培训包，并与一家技术公司合作实现远程监控。WS6-测试新的护理模式。我们将使用纸质和在线系统，在养老院和家中检查这项工作的效果，以确保它是实用、可行和有用的。

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.