Research Network for Alzheimer's Disease Home and Community Based Services

项目摘要 以家庭和社区为基础的痴呆症服务（HCBS）是必不可少的，而且还在不断增长。HCBS是一种 长期服务和支持，帮助日常功能，如吃饭，穿衣，洗澡和用餐 准备.这些服务促进社区生活，而不是机构生活，符合大多数消费者的需求。 喜好相对于迅速建立更多的HCBS，考虑到负担能力、获取机会、 痴呆症HCBS的交付、质量和结果都严重落后。甚至更一般的HCBS措施（不 与痴呆症有关的）不考虑痴呆症患者或其照顾者的独特需求， 设置、服务和付款人。此外，几乎不可能在美国各州甚至HCBS之间进行比较 由于缺乏连贯、统一的措施，特定国家内的人口受到严重影响。相关的质量领域包括 结构（例如，提供商能力），过程（例如，获得适当的服务），以及结果（例如，生活质量） 措施在制定这些衡量标准时，必须考虑到有下列情况的人群的差别衡量问题： 包括生活质量和痴呆症特有的家庭照顾者指标。该研究领域陷入困境， 这些挑战，并进一步加剧了缺乏集中的数据。加快实施基于证据的住房和住房补贴制度措施 痴呆症的结果是公平为重点，我们的研究网络寻求协调活动，发展多样化的板凳 提高政策导向研究的生产力，以改善融资，获取，交付和质量 监测痴呆症HCBS。我们将汇集研究各种形式和设置的HCBS的研究人员， 包括私人支付（例如，自掏腰包）和公共福利（医疗补助）服务。我们的网络活动是公平的- 驱动，因为他们的内容重点（确保公平的HCBS访问，质量和成果）和他们的重点是 建立一个更大，更多样化的痴呆症HCBS研究人员的工作台。基准建立工作将跨越以下连续体： 参与代表性不足的科学家和机构，从确保覆盖面和招聘，促进资金， 研究和出版的成功，并促进更广泛的传播，承认和长期的政策影响。 我们的研究网络的最终目标是（1）促进正式的沟通和知识共享， 推进创新的痴呆症HCBS研究;（2）增长和多样化的痴呆症HCBS研究人员的板凳;（3） 生成数据工具，以便于检查人口和结构、过程和结果的时间变化 痴呆症HCBS的措施;（4）促进更多的研究转化为痴呆症HCBS政策变化;和（4） 通过多元化和公平透镜开发网络基础设施和产品。为了实现这些目标，我们将 开发和维护网站和分销渠道;举行季度网络会议，每月工作组， 年度写作营和年度密集的数据研讨会;将有关数据源的信息集中在HCBS上，供PwD使用 在一个新的痴呆症HCBS数据中心;并举行翻译和传播培训研讨会。

PROJECT SUMMARY Home- and community-based services (HCBS) for dementia are essential and growing yet understudied. HCBS are a type of long-term services and supports that assist with everyday functioning such as eating, dressing, bathing, and meal preparation. These services facilitate community living, as opposed to institutional living, in line with most consumers’ preferences. Relative to the expeditious movement towards more HCBS, the consideration of affordability, access, delivery, quality, and outcomes of dementia HCBS are woefully behind. Even more general measures of HCBS (not relating to dementia) do not consider the unique needs of persons with dementia or their caregivers, and are fragmented by setting, service, and payer. Additionally, it is nearly impossible to compare measures across U.S. states or even HCBS populations within a given state due to a lack of coherent, harmonized measures. Relevant quality domains include structural (e.g., provider capacity), process (e.g., receipt of adequate services), and outcome (e.g., quality of life) measures. These measures must be developed with considerations for differential measurement issues for populations with dementia including quality of life and family caregiver metrics that are unique to dementia. The research field is mired by these challenges and is further exacerbated by the lack of centralized data. To expedite evidence-based measures of HCBS dementia outcomes that are equity-focused, our Research Network seeks to coordinate activities, grow a diverse bench bench, and increase the productivity of policy-oriented research to improve the financing, access, delivery, and quality monitoring of dementia HCBS. We will bring together researchers who work on all forms and settings of HCBS and include both private pay (e.g., out of pocket) and public benefit (Medicaid) services. Our Network activities are equity- driven, because of their content focus (ensuring equitable HCBS access, quality, and outcomes) and their focus on building a larger, more diverse bench of dementia HCBS researchers. Bench-building efforts will span the continuum of engagement of underrepresented scientists and institutions, from ensuring reach and recruitment, promoting the funding, research, and publication success, and facilitating the broader dissemination, recognition, and long-term policy impacts. The ultimate goals of our research network are to (1) foster formal communications and knowledge sharing to quickly advance innovative dementia HCBS research; (2) grow and diversify the bench of dementia HCBS researchers; (3) generate data tools to facilitate examination of population and temporal changes in structure, process, and outcome measures of dementia HCBS; (4) facilitate greater translation of research into dementia HCBS policy changes; and (4) develop a Network infrastructure and products through a diversity and equity lens. To achieve these goals, we will develop and maintain a website and distribution channels; hold quarterly Network meetings, monthly Working Groups, annual writing camps, and annual intensive Data Workshops; centralize information about data sources on HCBS for PwD within a new Dementia HCBS Data Center; and hold translation and dissemination training seminars.