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

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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.