Roybal Translational Research Center
to Promote Context-Specific Caregiving of Community-Dwelling Persons Living with Alzheimer’s Disease or Related Disorders
Nell Hodgson School of Nursing
By 2050, as many as 20 million Americans will be living with Alzheimer's disease or similar 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 Center will focus on two pilot studies: 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.