Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK.
Barnet Enfield and Haringey Mental Health Trust Liaison Psychiatry Team, North Middlesex University Hospital, London, UK.
Int J Geriatr Psychiatry. 2020 Aug;35(8):820-832. doi: 10.1002/gps.5251. Epub 2020 Jan 15.
Globally, the number of people with dementia who have palliative care needs will increase fourfold over the next 40 years. The Empowering Better End-of-Life Dementia Care (EMBED-Care) Programme aims to deliver a step change in care through a large sequential study, spanning multiple work streams.
We will use mixed methods across settings where people with dementia live and die: their own homes, care homes, and hospitals. Beginning with policy syntheses and reviews of interventions, we will develop a conceptual framework and underpinning theory of change. We will use linked data sets to explore current service use, care transitions, and inequalities and predict future need for end-of-life dementia care. Longitudinal cohort studies of people with dementia (including young onset and prion dementias) and their carers will describe care transitions, quality of life, symptoms, formal and informal care provision, and costs. Data will be synthesised, underpinned by the Knowledge-to-Action Implementation Framework, to design a novel complex intervention to support assessment, decision making, and communication between patients, carers, and inter-professional teams. This will be feasibility and pilot tested in UK settings. Patient and public involvement and engagement, innovative work with artists, policymakers, and third sector organisations are embedded to drive impact. We will build research capacity and develop an international network for excellence in dementia palliative care.
EMBED-Care will help us understand current and future need, develop novel cost-effective care innovations, build research capacity, and promote international collaborations in research and practice to ensure people live and die well with dementia.
在未来 40 年内，全球需要姑息治疗的痴呆症患者人数将增加四倍。“赋能改善终末期痴呆症关怀（EMBED-Care）”计划旨在通过一项大型连续研究，跨越多个工作领域，实现护理的重大变革。
我们将在痴呆症患者生活和死亡的环境中（包括他们自己的家、护理院和医院）使用混合方法：从政策综合和干预措施综述开始，我们将制定一个概念框架和潜在的变革理论。我们将使用链接数据集来探索当前的服务利用情况、护理过渡以及不平等现象，并预测终末期痴呆症护理的未来需求。对痴呆症患者（包括早发性和朊病毒痴呆症）及其照顾者进行纵向队列研究，描述护理过渡、生活质量、症状、正规和非正规护理提供情况以及成本。数据将通过知识转化实施框架进行综合分析，为支持患者、照顾者和跨专业团队之间的评估、决策制定和沟通设计一种新颖的复杂干预措施。该干预措施将在英国进行可行性和试点测试。患者和公众的参与和投入，以及与艺术家、政策制定者和第三部门组织的创新性合作，都将嵌入其中，以推动产生影响。我们将建立研究能力，并为卓越的痴呆症姑息治疗建立国际网络。
EMBED-Care 将帮助我们了解当前和未来的需求，开发新颖的具有成本效益的护理创新，建立研究能力，并促进研究和实践中的国际合作，以确保痴呆症患者能够有尊严地生活和死亡。
