Roybal Translational Research Center to Promote Context-Specific Caregiving of Community-Dwelling Persons Living with Alzheimer's Disease or Related Disorders

皇家转化研究中心将促进对患有阿尔茨海默病或相关疾病的社区居民进行具体护理

• 批准号: 10017833
• 负责人: Ken W Hepburn
• 金额: $ 75.65万
• 依托单位: EMORY UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-09-15 至 2024-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10017833
• 关键词: Acute; Address; Aging; Alzheimer' s Disease; Alzheimer' s disease caregiver; American; Capsicum; Caregivers; Caring; Center for Translational Science Activities; Chronic; Communication; Communities; Country; Deep South; Dementia caregivers; Development; Diagnosis; Disease; Education; Elderly; Elements; Ensure; Evidence based intervention; Family; Fostering; Future; Geographic Locations; Geriatric Nursing; Geriatrics; Gerontology; Goals; Grant; Growth; Health Care Costs; Health Expenditures; Health system; Heterogeneity; Human Resources; Individual; Infrastructure; Institution; Intervention; Intervention Studies; Letters; Living Wills; Location; Medical; Mentors; Methods; Minority; Minority Groups; Monitor; Neurocognitive; Outcome; Persons; Phase; Pilot Projects; Politics; Population Group; Primary Progressive Aphasia; Process; Quality of life; Recommendation; Reporting; Research; Research Personnel; Resources; Rest; Role; Rural; School Nursing; Science; Science Enrichment; Sex Orientation; Source; Statutes and Laws; Structure; Testing; Thinking; Time; United States National Institutes of Health; Voice; Work; base; care recipients; caregiver interventions; caregiving; clinical center; community living; comorbidity; design; ethnic diversity; evidence base; experience; healthy aging; improved; informal caregiver; informal caregiving; interest; intervention program; outreach; programs; public health relevance; racial and ethnic; racial diversity; social; social cognitive theory; success; therapy design; therapy development; uptake

Abstract. The goal of the proposed Roybal Translational Research Center is to provide support to investiga- tors across the nation to conduct NIH Stage I-III intervention research that will enhance the context-specific role-mastery of informal caregivers of persons living with Alzheimer’s disease and similar illnesses. We look to the future: by 2050, as many as 20 million Americans will be living with these illnesses, and the number of informal caregivers will expand to 40-50 million. Informal caregiving is the key to the quality of life and continued community living of persons living with Alzheimer’s and similar illnesses; it is also a bulwark against rising health care costs. Our Center rests on the premise that informal caregiving is not one homogenous entity but is context-specific. As the U.S. continues to experience major reconfigurations in its social and demographic composition (we will, for instance, be a “minority majority” country by 2043), we expect caregiving to occur in an ever-increasing set of heterogeneous contexts. These contexts are framed by various illness conditions, family, cultural, or social caregiving situations, geographical location, and care recipients’ transitions through care settings, especially the acute setting. The two pilots proposed in this application exemplify topics shaped by heterogeneous contexts: one focuses on caregiving for persons with Primary Progressive Aphasia, the other on the situation of caregivers from a sexual-orientation minority group. Our Center’s second assertion is that interventions developed to address these contexts must be designed with the involvement of caregivers/consumers from within these contexts. Our Center builds on substantial contributed support from our institution and a set of existing relationships with key national networks of Alzheimer’s and caregiver researchers, centers and investigators engaged in geriatrics and gerontology research, and centers and organizations focused on promoting diversity and the voice of the consumer. Our Center will provide a set of integrated processes and a method of “design thinking” (product-focused facilitated multi-perspective discourse) embedded in our Design Studio that creates a pipeline leading to increasingly sophisticated caregiver interventions. The Center incorporates an outreach function to attract and engage investigators and consumers in discussions about and design of interventions. It includes a function for mentoring interested investigators in the development of effective pilot proposals and a rigorous method for selecting especially meritorious proposals. In the implementation phase of supported pilots, the Center’s Pilot Core assumes a mentoring and monitoring role to ensure pilot success, and the Administrative Core provides structure to ensure the responsible conduct of the pilots. The Pilot Core and Design Studio work with pilot investigators to craft and follow an individual plan by which a proposal for the next stage of development for the pilot is created to seek support from us or other sources. The inter-related activities of the Center will enable it to pursue a second overall aim, the continued advancement of the science of intervention development.

摘要：拟议的皇家转化研究中心的目标是为研究提供支持。 全国各地的人员进行 NIH I-III 阶段干预研究，这将增强针对具体情况的干预研究 我们希望对阿尔茨海默病和类似疾病患者的非正式护理人员进行角色掌握。 未来：到 2050 年，多达 2000 万美国人将患有这些疾病，并且 非正式护理人员将扩大到 40-5000 万人，非正式护理是生活质量和生活质量的关键。 阿尔茨海默病和类似疾病患者的持续社区生活也是预防的一个堡垒； 我们中心的前提是，非正式护理不是一个同质的实体。 但随着美国继续经历社会和经济领域的重大重组。 人口构成（例如，到 2043 年我们将成为“少数族裔多数”国家），我们期望提供护理服务 发生在越来越多的异质环境中，这些环境是由各种疾病构成的。 条件、家庭、文化或社会护理情况、地理位置以及护理接受者的 通过护理环境，特别是急性环境的过渡 本申请中提出了两个试点。 举例说明由异质背景形成的主题：其中一个重点是对患有初级疾病的人的护理 进行性失语症，另一个关于来自性取向少数群体的护理人员的情况。 该中心的第二个主张是，为解决这些情况而制定的干预措施必须考虑到 我们的中心以大量贡献为基础，吸引了护理人员/消费者的参与。 我们机构的支持以及与阿尔茨海默病和阿尔茨海默病的主要国家网络的一系列现有关系 研究人员 从事老年医学和老年学研究的护理人员、中心和研究人员以及中心 致力于促进多样性和消费者声音的组织将提供一套。 集成流程和“设计思维”方法（以产品为中心，促进多视角 话语）嵌入到我们的设计工作室中，创建了一条通往日益复杂的管道 该中心具有吸引和参与调查人员的外展功能。 它包括指导感兴趣的功能。 研究人员制定有效的试点提案和严格的方法来选择特别 在支持试点的实施阶段，中心的试点核心假设 指导和监督作用，以确保试点成功，行政核心提供结构 确保试点的负责任的行为 试点核心和设计工作室与试点调查员合作 制定并遵循个人计划，为试点的下一阶段的开发提出建议 寻求我们或其他来源的支持，该中心的相互关联的活动将使其能够追求 第二个总体目标是持续推进干预发展科学。