Alzheimer's disease (AD) is the only disease among the ten leading causes of death in the U.S. with no known prevention or cure. The number of individuals affected by AD is expected to continue grow from the current 5 million to 7.1 million by 2025 and to 13.8 million by 2050. Public health is significantly impacted by AD because of the rapidly growing number of those affected and because of the heavy emotional, physical, and financial burdens on affected individuals and caregivers. As care needs increase substantially with the progress of disease, it is critical that appropriate care is provided in a timely manner;yet evidence consistently indicates that people, ethnic minorities in particular, delay in seeking help until a late stage of AD. Research is needed to investigate ways to address this growing and urgent public health concern regarding delayed or forgone arrangements for AD care. Using a community-based participatory research approach, this study examines potential barriers and facilitators to help-seeking for AD in Korean Americans (KA), the 4th largest and fastest- growing Asian American sub-population. KAs are primarily foreign-born and non-English speaking and have higher rates of AD risk factors (e.g., stroke, hypertension, and diabetes) than their non-Hispanic white counterparts, making them a vulnerable group. Using a sequential mixed-method approach, we will conduct a cross-sectional survey of 220 middle-aged and older KA adults (Phase 1), followed by deliberative focus groups (DFG) with 30 stakeholders in the KA community (Phase 2). We will examine behavioral intentions for help-seeking from each of the following areas: primary care physicians, AD specialists, care options, and advance health care planning.
The specific aims of this study are to: [1] Assess knowledge about AD, beliefs (stigma, attitudes, subjective norm, and perceived behavioral control) regarding help-seeking, and intention to seek help, for AD;[2] Examine how knowledge about AD and cultural/societal beliefs affect help-seeking intentions among KAs;and [3] Identify what cultural/societal- (cultural orientation, household characteristics, social engagement), educational- (educational attainment and English proficiency), and health care system- (health care and information sources and exposure to AD) related factors affect KAs'knowledge about AD. The primary DFG aims are to: [4a] Explain the results of the community survey within the cultural and community context;[4b] Examine stakeholder'perspectives and identify community-informed strategies to promote a better understanding about AD and timely help-seeking in the KA community. The secondary DFG aim is to: [5] Test the feasibility and impact of DFG in raising participants'awareness about AD and identify ways to address issues that affect AD care in the community. Findings of this proposed study will inform policy makers and program developers to identifying barriers, facilitators, and potential strategies to promote a better understanding about AD and positive perspectives about help-seeking in minority communities, which are critical in designing culturally responsive programs for this traditionally underserved population.

Public Health Relevance

Alzheimer's disease, the 6th leading cause of death in the United States, affects older individuals regardless of race and ethnicity. This community-based participatory research addresses the growing and urgent public health concern for delayed or forgone arrangements for Alzheimer's care in Korean Americans, one of the fastest growing ethnic minority groups, by examining potential barriers, facilitators, and mediators of people's intention to seek help for Alzheimer's. The findings of this proposed study will inform policy makers and program developers in identifying potential strategies to promote better understanding about Alzheimer's disease and positive perspectives about seeking help for Alzheimer's in minority communities.

National Institute of Health (NIH)
Agency for Healthcare Research and Quality (AHRQ)
Small Research Grants (R03)
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Health Systems Research (HSR)
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Sandmeyer, Brent
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University of Maryland Baltimore
Schools of Social Work
United States
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