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.

项目总结