Engaging Family and Other Unpaid Caregivers of Persons with Dementia in Health Care Delivery: A Model for Chronic and Progressive Disease

让痴呆症患者的家人和其他无偿护理人员参与医疗保健服务：慢性病和进展性疾病的模型

• 批准号: 9914392
• 负责人: Catherine Riffin
• 金额: $ 4.97万
• 依托单位: WEILL MEDICAL COLL OF CORNELL UNIV
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-09-15 至 2022-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9914392
• 关键词: Academy; Advocate; Aging; Alzheimer' s Disease; Alzheimer' s disease related dementia; American; Appointment; Area; Caregiver support; Caregivers; Caring; Chronic Disease; Collaborations; Communities; Congresses; Consensus; Consensus Workshop; Dementia; Dementia caregivers; Disease Management; Economic Burden; Elderly; Engineering; Ensure; Evaluation; Family; Family Caregiver; Feeling; Fostering; Foundations; Friends; Funding Agency; Future; Gerontology; Healthcare; Healthcare Systems; Hospitalization; Hospitals; Hour; Individual; Institutes; Institutionalization; Interest Group; Left; Medical; Medicine; Methods; Modeling; Monitor; Outcome; Patient Care; Patients; Peer Review; Persons; Play; Policies; Policy Maker; Primary Health Care; Process; Progressive Disease; Provider; Proxy; Publications; Quality of Care; Recommendation; Recording of previous events; Reporting; Research; Research Priority; Role; Safety; Scientist; Services; Shoulder; Standardization; Structure; System; Targeted Research; Time; Training Support; Translational Research; United States Centers for Medicare and Medicaid Services; United States National Academy of Sciences; United States National Institutes of Health; Visit; base; burnout; care coordination; care delivery; care recipients; clinical care; dementia caregiving; design; development policy; evidence base; experience; health care delivery; health care settings; implementation science; journal article; multidisciplinary; research to practice; retiree; skills; social; symposium; uptake

PROJECT SUMMARY This R13 aims to establish a policy- and practice-aligned research agenda for enhancing caregiver identification and engagement in health care settings, using Alzheimer's disease and related dementias (ADRD) as a model for other chronic and progressive diseases. An estimated 18 million caregivers (relatives, friends) provide 1.3 billion hours of care on a monthly basis to community-dwelling older adults (≥65 years). These caregivers perform essential functions within the health care system, from accompanying the care recipient to primary care appointments to facilitating hospital discharge processes to coordinating care across settings and providers. Caregivers of persons with ADRD play a particularly vital role. They provide more hours of care than other caregivers and shoulder additional responsibilities, such as monitoring the older adult's safety, making proxy health care decisions, and acting as an advocate on the patient's behalf. While congress has passed several bipartisan Acts to support caregivers (e.g., the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act; Caregiver Advise, Record, and Enable (CARE) Act; and National Alzheimer's Project Act (NAPA)), little research has evaluated the impact of caregiver-based policies on outcomes for individuals (caregivers, patients), practice, or health care systems, and few evidence-based strategies have been designed to optimize caregiver involvement in health care delivery processes. Needed is a targeted research agenda that is aligned with policy and practice initiatives to ensure a robust, unified approach to family caregiver identification and engagement in health care settings. To establish credible research priorities for engaging caregivers in health care delivery processes, this R13 will use an evidence- based, participatory method designed to elicit multidisciplinary input: the Cornell Institute for Translational Research on Aging (CITRA) Research-to-Practice Consensus Workshop Model. The CITRA Model harnesses practice wisdom by engaging stakeholders with diverse expertise, skills, and experience in a process of articulating and refining research priorities. Using this model as a guiding framework, we will accomplish the three aims: 1) Convene a consensus conference with key stakeholders (social scientists, practitioners, individuals in policy-related roles, and family caregivers) to review the evidence behind existing policies and practices for caregiver engagement in health care delivery, and co-develop a policy- and practice-aligned research agenda, 2) Disseminate conference findings via publication (a peer-reviewed journal article, non- technical report, and media release) and presentation (at national conferences and to the CARE Act and NAPA advisory councils), and 3) Develop and maintain working interest groups to foster continued collaboration among conference attendees who are working on projects related to ADRD caregiving and health care delivery processes.

项目摘要 该R13旨在建立一个与政策和实践一致的研究议程，以增强照顾者 使用阿尔茨海默氏病和相关痴呆症的识别和参与医疗保健环境 （ADRD）作为其他慢性和进行性疾病的模型。估计有1800万护理人员（亲戚， 朋友）每月向社区居住的老年人（≥65岁）提供13亿小时的护理。 这些护理人员在医疗保健系统中发挥重要功能，参与护理 接受初级保健的接收者，以协助医院出院过程以协调整个护理 设置和提供商。患有ADRD的人的护理人员扮演着特别重要的角色。他们提供更多的时间 与其他护理人员相比，护理人员和承担其他责任，例如监视老年人的 安全，做出代理医疗保健决策，并代表患者担任倡导者。国会 已经通过了几项双方行为来支持护理人员（例如，认识，协助，包括，支持和 参与（提高）家庭护理人员法案；护理人员建议，记录和启用（CARE）法案；和国家 阿尔茨海默氏症的项目法（NAPA），很少的研究评估了基于护理人员的政策对 个人（护理人员，患者），实践或医疗保健系统的成果，很少 策略旨在优化护理人员参与医疗保健提供过程。需要的是 有针对性的研究议程与政策和实践计划保持一致，以确保坚固，统一 家庭护理人员识别和参与医疗保健环境的方法。建立可靠的 研究重点是让护理人员参与医疗保健提供过程，该R13将使用证据 - 基于旨在引发多学科输入的参与方法：康奈尔转化研究所 老化研究（CITRA）研究与实践共识研讨会模型。 Citra模型线束 通过与利益相关者保持潜水员专业知识，技能和经验来实践智慧 表达和完善研究的重点。使用此模型作为指导框架，我们将完成 三个目的：1）与主要利益相关者（社会科学家，从业者， 与政策有关的角色和家庭照顾者的个人）审查现有政策背后的证据 护理人员参与医疗保健提供的实践，并共同制定政策和实践一致 研究议程，2）通过出版物传播会议调查结果（经过同行评审的期刊文章，非 - 技术报告和媒体发布）和演讲（在国家会议和《护理法》和纳帕 咨询委员会）和3）发展和维护工作兴趣小组以促进继续合作 在从事与ADRD护理和医疗保健有关的项目的会议参与者中 过程。