To reduce the burden of caregiving on health outcomes of midlife women: Asian American family caregivers of persons living with Alzheimer'sdisease

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Currently, in the U.S., 5.8 million persons are living with Alzheimer’s Disease, subsequently involving about 15 million family caregivers. The wide negative influences of caregiving on health outcomes of family caregivers of persons living with Alzheimer’s Disease (PLAD) have been reported. Furthermore, racial/ethnic minority women including Asian American midlife women are more likely to suffer from caregiving burden compared with their counterparts, mainly due to their cultural attitudes related to Alzheimer’s Disease and caregiving (e.g., stigma, family obligations, women as caregivers). To reduce the burden of caregiving on the health outcomes of midlife women who are family caregivers of PLAD (MWPLAD), an increasing number of interventions to provide information and support/coaching have been developed and used. However, most of the interventions have rarely succeeded in achieving their goals, and dropout rates have been high. One major reason may be that the interventions have rarely been designed while considering caregivers’ cultural attitudes related to Alzheimer’s Disease and caregiving. For instance, due to cultural hesitance to discuss dementia, Asian Americans tend not to share their caregiving experience, including their heavy burden of caregiving and subsequent psychological and physical symptoms, until they get severe/serious problems/issues that cannot be tolerated anymore. Also, most interventions require MWPLAD to arrange care for the care recipient while the caregivers travel to and attend the interventions. With advances in computer and mobile technologies, a technology-based program can provide a highly innovative and effective way (without physical attendance) to provide information and coaching/support for MWPLAD while considering their cultural attitudes. Thus, based on the Bandura’s Theory, the research team developed the first technology-based information and coaching/support program that is tailored for Asian American midlife women who are family caregivers of PLAD (TACAD) while considering their cultural attitudes. TACAD uses a web app with Virtual Reality technology and has several innovative features in its design and delivery methods that overcome shortcomings in existing programs (including cultural tailoring and self-adaptation functionality using a machine learning method). The purpose of this 2-phase, mixed- methods, exploratory study is to preliminarily evaluate TACAD in improving health outcomes of Asian American midlife women who are family caregivers of persons living with Alzheimer’s disease (AACA) and their care recipients. Specific aims are to: (a) qualitatively evaluate TACAD through an expert review and a usability test; and (b) quantitatively evaluate the preliminary efficacy of TACAD in improving health outcomes of AACA and their care recipients. Phase 1 includes an expert review among 5 experts in in family caregivers of PLAD and a usability test among 10 AACA. Phase 2 adopts a randomized repeated measures pretest/posttest control group design among 60 AACA. Long-term goals are to implement the program in various settings and populations and enhance the methodology of culturally tailored technology-based interventions for minority caregivers.