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

阿尔茨海默病家庭和社区服务研究网络

• 批准号: 10876632
• 负责人: Regina A Shih
• 金额: $ 45.22万
• 依托单位: EMORY UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-09-01 至 2027-05-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10876632
• 关键词: Acceleration; Address; Alzheimer' s Disease; American; Bathing; Caregivers; Caring; Communication; Complex; Consumer Preferences; Cues; Data; Data Sources; Dementia; Development; Disabled Persons; Disparity; Eating; Educational workshop; Elderly; Electronic Mail; Ensure; Equity; Evaluation; Family Caregiver; Fostering; Funding; Goals; Group Meetings; Growth; Health; Health Services Research; Home; Institution; Knowledge; Measurement; Measures; Medicaid; Medical; Memory; Mentorship; Methods; Monitor; Movement; Network Infrastructure; Observational Study; Outcome; Outcome Measure; Performance; Persons; Policies; Population; Preparation; Privatization; Process; Process Measure; Productivity; Provider; Publications; Quality of life; R24; Reporting; Research; Research Activity; Research Personnel; Resources; Scientist; Selection Bias; Services; Sterile coverings; Structure; Surveys; System; Training; Translational Research; Translations; Underrepresented Populations; United States Centers for Medicare and Medicaid Services; Work; Writing; aging population; behavioral health; cognitive function; community based service; community living; data centers; data infrastructure; data tools; dementia care; disability; diversity and equity; equity, diversity, and inclusion; ethnic difference; evidence base; experience; improved; inequitable distribution; innovation; learning network; lens; marginalized population; meetings; racial difference; recruit; service uptake; social media; success; user-friendly; verbal; waiver; web site; working group

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.

项目摘要 基于家庭和社区的痴呆症服务（HCB）是必不可少的，并且尚未理解。 HCB是一种类型 长期服务和支持，可以帮助每天运作，例如饮食，洗澡和餐 准备。这些服务设施社区与机构生活相反，与大多数消费者一致 偏好。相对于迅速向更多HCB的运动，考虑可负担性，访问权限， 痴呆症HCB的分娩，质量和结果落后。甚至更一般的HCB措施（不是 与痴呆症有关）不要考虑痴呆症患者或其照顾者的独特需求，而是被分散的 设置，服务和付款人。此外，几乎不可能比较美国各州甚至HCB的措施 由于缺乏连贯，协调的措施，在给定状态内的种群。相关质量领域包括 结构性（例如提供者能力），过程（例如，接收适当服务）和结果（例如，生活质量） 措施。这些措施必须通过考虑人口的差异测量问题的考虑。 痴呆症包括生活质量和家庭护理人员指标，这些指标是痴呆症所特有的。研究领域陷入 缺乏集中式数据，这些挑战并进一步加剧了这些挑战。加快基于证据的HCB的措施 以股权为中心的痴呆症结果，我们的研究网络旨在协调活动，发展潜水员的长椅 替补席，并提高面向政策的研究的生产率，以改善融资，访问，交付和质量 监测痴呆HCBS。我们将团结在一起的研究人员 包括私人薪酬（例如，从口袋）和公共福利（医疗补助）服务。我们的网络活动是公平性 - 由于其内容的重点（确保公平的HCB访问，质量和结果）驱动以及他们的关注 建立更大的潜水员HCBS研究人员。板凳建设工作将跨越 参与代表性不足的科学家和机构，从确保覆盖和招聘，促进资金， 研究和发布成功，并支持更广泛的传播，认可和长期政策影响。 我们研究网络的最终目标是（1）促进正式的沟通和知识共享 提高创新性痴呆HCBS研究； （2）成长和多样化HCBS研究人员的痴呆症； （3） 生成数据工具以促进人口检查以及结构，过程和结果的临时变化 痴呆HCB的度量； （4）促进对痴呆症HCBS政策变化的研究更多地转化； （4） 通过多样性和股权镜头开发网络基础架构和产品。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数据研讨会；集中有关PWD HCB的数据源的信息 在新的痴呆症HCBS数据中心中；并举行翻译和传播培训半手。