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

抽象的。拟议的Roybal翻译研究中心的目标是为调查提供支持- Tors在全国范围内进行NIH I-III阶段干预研究，这将增强特定背景 阿尔茨海默病和类似疾病患者的非正式照顾者的角色掌握。我们期待着 未来：到2050年，将有多达2000万美国人患有这些疾病，而 非正式照顾者将扩大到4000万至5000万人。非正式照料是提高生活质量的关键 阿尔茨海默氏症和类似疾病患者的持续社区生活；它也是防止 不断上涨的医疗保健成本。我们中心的前提是，非正式照料不是一个同质实体 但它是特定于上下文的。随着美国继续在其社会和经济领域经历重大重组 人口构成(例如，到2043年，我们将成为一个“少数族裔占多数”的国家)，我们预计 发生在一组不断增加的异类环境中。这些背景是由各种疾病构成的 条件、家庭、文化或社会照顾情况、地理位置和受照顾者 通过护理环境过渡，特别是急性环境。本申请中提出的两个试点项目 例证由不同背景塑造的主题：一个重点是对患有初级疾病的人的护理 一个是进行性失语症，另一个是来自性倾向少数群体的照顾者的情况。我们的 Center的第二个断言是，为解决这些背景而开发的干预措施必须设计为 照顾者/消费者在这些背景下的参与。我们的中心建立在大量贡献的基础上 来自我们机构的支持，以及与阿尔茨海默氏症和阿尔茨海默病关键国家网络的一系列现有关系 从事老年学和老年学研究的护理研究人员、中心和调查人员，以及中心 以及专注于促进多样性和消费者声音的组织。我们中心将提供一套 集成流程和“设计思维”的方法(以产品为中心促进多视角 话语)嵌入到我们的Design Studio中，创建了一条通往日益复杂的 护理者干预。该中心具有外联功能，以吸引和吸引调查人员和 消费者参与了干预措施的讨论和设计。它包括一个指导感兴趣的人的功能 调查人员正在制定有效的试点建议和严格的选择方法 有价值的建议。在支持的试点的实施阶段，该中心的试点核心承担 发挥指导和监测作用，确保试点成功，行政核心提供结构，以 确保飞行员负责任的行为。Pilot Core和设计工作室与Pilot调查人员合作 制定并遵循个人计划，根据该计划为试点的下一阶段开发制定建议 寻求我们或其他来源的支持。中心的相互关联的活动将使其能够开展 第二个总体目标，继续推进干预发展科学。

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.