LINC-AD: Leveraging an Interdisciplinary Consortium to Improve Care and Outcomes for Persons Living with Alzheimer's and Dementia

2017年全国关爱、服务和支持研究峰会提出的建议中 痴呆症患者及其照顾者是以人为中心测量方法的发展 结果。这一目标与阿尔茨海默氏症协会的目标一致，该协会最近发布了2018年 痴呆症护理实践建议，围绕痴呆症护理的九个领域模型组织。而当 在制定建议时，注意到可用于以下目的的措施和护理工具存在严重限制 指导实践并评估结果。具体地说，现有措施不能充分反映 痴呆症患者及其照顾者；关注生物医学问题，而不是心理社会问题；是否存在缺陷- 而不是以实力为基础；没有充分考虑提供护理的系统；忽视了 使用它们的环境(例如，疾病阶段)的重要性。为了更好地实现这些目标 衡量构成了该领域早就应该发生的一次典范转变。即使有更好的措施，也有 也缺乏工具来帮助提供者知道他们是否完全遵循了基于证据的做法。 如果没有这样的工具，质量改进就会受到阻碍。作为回应，我们建议创建一个国际 研究网络，题为利用跨学科联盟改善对 阿尔茨海默氏症和痴呆症患者(LINC-AD)。财团的核心将是目前的 痴呆症护理实践建议工作组成员(研究顾问)，以及第二个 由痴呆症患者、照顾者和专业提供者(护理顾问)组成的小组。这个 LINC-AD财团将开展一系列高影响力的活动，旨在迎来下一阶段的 护理阿尔茨海默病及相关障碍患者的心理社会研究。用九个字 作为框架的领域模型，LINC-AD将扩大对心理学的科学兴趣和参与 痴呆症研究在完成以下目标的同时：(1)批评现有的结果衡量标准和护理工具 并找出差距；(2)在需要时促进开发新的成果措施和护理工具；以及 (3)促进现有成果和新成果的传播、采用、实施和持续使用 测量和护理工具。与阿尔茨海默氏症协会的合作带来了独特和实质性的 这项提议的资源。该协会将与我们的研究和护理顾问合作，主办网络研讨会和 会议，发出征集论文的呼吁，并为响应项目目标的至少12个种子赠款提供资金。 他们还将为LINC-AD推荐的结果托管一个永久和可持续的在线存储库 措施和工具，并在其现有的最先进的在线可共享数据库中增加一个心理社会臂 (全球阿尔茨海默病协会互动网络；GAAIN)。LINC-AD的结果将促进更大的 和更紧密联系的科学界进行新的分析并促进跨学科的努力 更好地了解和解决痴呆症患者及其护理提供者的需求。

Among the recommendations of the 2017 National Research Summit on Care, Services, and Supports for Persons with Dementia and their Caregivers is the development of methods for measuring person-centered outcomes. This goal aligns with that of the Alzheimer's Association, which recently released their 2018 Dementia Care Practice Recommendations, organized around a nine-domain model of dementia care. While developing the recommendations, critical limitations were noted in the measures and care tools available to guide practice and evaluate outcomes. Specifically, existing measures do not adequately reflect the voices of persons with dementia and their caregivers; focus on biomedical rather than psychosocial issues; are deficit- as opposed to strengths-based; insufficiently consider the system in which care is provided; and overlook the importance of the context (e.g., stage of disease) in which they are to be used. These goals for better measurement constitute a paradigmatic shift in the field that is long overdue. Even with better measures, there is also a dearth of tools to help providers know whether they are fully following evidence-based practices. Absent such tools, quality improvement is hampered. In response, we propose to create an international research network, entitled Leveraging an Interdisciplinary Consortium to Improve Care and Outcomes for Persons Living with Alzheimer's and Dementia (LINC-AD). The core of the consortium will be the current Dementia Care Practice Recommendations working group members (the Research Advisors), and a second group composed of persons with dementia, caregivers, and professional providers (the Care Advisors). The LINC-AD consortium will undertake a series of high impact activities designed to usher in the next phase of psychosocial research in care for persons with Alzheimer's disease and related disorders. Using the nine domain model as a framework, LINC-AD will broaden scientific interest and involvement in psychosocial dementia research while completing the following aims: (1) critique existing outcome measures and care tools and identify gaps; (2) promote the development of new outcome measures and care tools where needed; and (3) facilitate the dissemination, adoption, implementation, and sustained use of existing and new outcome measures and care tools. Collaboration with the Alzheimer's Association brings unique and substantial resources to this proposal. The Association will work with our Research and Care Advisors, host webinars and meetings, issue calls for papers, and fund a minimum of twelve seed grants responsive to the project aims. They will also host a permanent and sustainable online repository for the resulting LINC-AD recommended measures and tools, and add a psychosocial arm to their existing state-of-the-art online shareable database (Global Alzheimer's Association Interactive Network; GAAIN). The results of the LINC-AD will facilitate a larger and more connected scientific community to conduct novel analyses and facilitate interdisciplinary efforts to better understand and address the needs of persons living with dementia and their care providers.