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: 10437117
• 负责人: Regina A Shih
• 金额: $ 47.27万
• 依托单位: RAND CORPORATION
• 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 2023-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10437117
• 关键词: Address; Alzheimer' s Disease; American; Bathing; Caregivers; Caring; Communication; Complex; Consumer Preferences; Cues; Data; Data Sources; Dementia; Development; Disabled Persons; Eating; Educational workshop; Elderly; Electronic Mail; Ensure; Evaluation; Family Caregiver; Fostering; Funding; Goals; Group Meetings; Growth; Health; Health Services Research; Home; Institution; Knowledge; Measurement; Measures; Medicaid; Medicaid services; Medical; Memory; Mentorship; Methods; Monitor; Monoclonal Antibody R24; Movement; Network Infrastructure; Observational Study; Outcome; Outcome Measure; Performance; Persons; Policies; Population; Preparation; Privatization; Process; Process Measure; Productivity; Provider; Publications; Quality of life; 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; ethnic difference; evidence base; experience; improved; inequitable distribution; innovation; learning network; lens; marginalized population; meetings; racial and ethnic; recruit; service uptake; social media; success; user-friendly; 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.

项目总结 以家庭和社区为基础的痴呆症服务(HCBS)是必要的，而且还在不断增长，但研究不足。六氯联苯是一种 长期服务和支持，帮助日常工作，如吃饭、穿衣、洗澡和用餐 准备工作。这些服务促进了社区生活，而不是机构生活，符合大多数消费者的 偏好。相对于迅速转向更多的氯氟化碳，考虑到可负担性、可及性、 痴呆症HCBS的交付、质量和结果都严重落后。更一般的六氯联苯衡量标准(不是 与痴呆症有关)没有考虑痴呆症患者或他们的照顾者的独特需求，并被 设置、服务和付款人。此外，几乎不可能比较美国各州的措施，甚至是HCBS 由于缺乏连贯、协调的措施，某一州内的人口数量减少。相关的质量领域包括 结构(如提供者能力)、过程(如接受适当服务)和结果(如生活质量) 措施。在制定这些措施时，必须考虑到对具有以下特征的人群的差异测量问题 痴呆症包括痴呆症独有的生活质量和家庭照顾者指标。这个研究领域陷入了困境 这些挑战并因缺乏集中数据而进一步加剧。加快以证据为基础的六氯联苯措施 关注公平的痴呆症结果，我们的研究网络寻求协调活动，培养多样化的法官队伍 提高政策性研究的生产力，改善融资、准入、交付和质量 监测痴呆症患者的健康状况。我们将汇聚研究各种形式和环境的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- 受驱动，因为他们注重内容(确保公平的HCBS访问、质量和结果)，并专注于 建立一个更大、更多样化的痴呆症HCBS研究人员队伍。板凳建设的努力将跨越 代表不足的科学家和机构的参与，从确保影响和招聘，促进资金， 研究和出版的成功，并促进更广泛的传播、认可和长期政策影响。 我们研究网络的最终目标是：(1)促进正式沟通和知识共享，以迅速 推进创新的痴呆症HCBS研究；(2)扩大和多样化痴呆症HCBS研究人员；(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 (4)促进更多地将研究转化为痴呆症的政策变化；和(4) 通过多元化和公平的视角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；召开季度网络会议，每月工作组， 年度写作训练营和年度密集数据研讨会；集中关于用于PWD的HCBS数据源的信息 在一个新的痴呆症数据中心内；并举办翻译和传播培训研讨会。