Alzheimer’s disease is the fourth leading cause of death in California compared to sixth in the U.S., and the number of Americans living with Alzheimer’s Disease and Related Dementias (ADRD) is expected to increase from 5.7 to 14 million by 2050. It is important to ensure that underserved communities, such as Asian Americans and Pacific Islanders (AAPI), are engaged and educated on ADRD as disparities exist in knowledge about ADRD among AAPI and Asian American caregivers experience disparities in depression, burden, and physical health compared to non-Hispanic White caregivers even though AAPI are the most rapidly growing racial group of older Americans at risk for ADRD. Research participation from AAPI are limited and the sparse research suggests that AAPI are interested in being engaged, but that various concerns (e.g. lack of cultural/linguistic information and mistrust) need to be addressed in order to improve participation in ADRD research, including clinical trials participation. To overcome these barriers to ADRD clinical research participation, we will implement culturally appropriate and innovative recruitment strategies from a collaborative team of trusted sources of information (e.g. community partners). The ultimate goal of the proposed project, Collaborative Approach for Asian Americans and Pacific Islanders Research and Education (CARE) in Alzheimer’s Disease and Related Dementias, is to address the gap and reduce disparities in ADRD research participation among AAPI through the creation of a registry of AAPI who are interested in participating in various types of ADRD research. CARE will be conducted in five languages (English, Mandarin, Cantonese, Vietnamese, Korean) across four sites in California (San Francisco Bay Area, Sacramento County, Los Angeles County, and Orange County). CARE is critical to ensure that AAPI, an underserved population, are meaningfully included in ADRD research.CARE will accomplish the following: a) Develop a registry that will facilitate future ADRD research with AAPI; b) Serve as a recruitment model for other populations; c) Increase the capacity of AD Centers/Institutes at and develop a new collaborative team across five universities; and, d) Develop a robust approach and add to the science of recruiting and retaining minorities in research with the overall goal of reducing ADRD disparities. CARE addresses Goal F.3. of NIA's Strategic Directions for Research on Aging: "develop and implement strategies to increase inclusion of diverse populations in research."
Our study is a registry, so we will refer participants to other studies and collaborators. The number of visits for these studies may vary. To enroll in our registry, participants must complete a 15-20 minute online survey. We will ask registrants to renew their enrollment annually by updating their baseline responses.
Study activities may include:
Participants will be asked to complete a short survey consisting of questions about socio demographic measures like age and race, contact information, health questions such as general health and medical history, whether they are caring for any person(s), and their research participation preferences.