A culturally grounded approach to understanding and improving Alzheimer'sdisease and related dementia (ADRD) knowledge, attitudes, and behaviors forAmerican Samoan family caregivers

ABSTRACT Alzheimer’s Disease and Related Dementias (ADRD) are progressive neurodegenerative disorders that include impairments in cognitive ability and overall functioning and have devastating impacts on both individuals living with ADRD and their families. Native Hawaiian and Pacific Islanders (NHPI) are among the fastest growing racial/ethnic groups in the United States, and Samoans are the 2nd largest NHPI sub-population. In American Samoa, a U.S. territory with 90% of the population identifying as Samoan, there is pressing concern about ADRD due to a growing elder population disproportionately affected by ADRD risk factors including obesity, hypertension, and type 2 diabetes. The at-risk age group and their family caregivers (hereafter “caregivers”) face complex challenges due to low health literacy, low education, and limited access to formal support services. Evidence suggests that caregiving for someone with ADRD is more taxing than other medical conditions and often corresponds with increased anxiety, depression, and poorer quality of life for the caregiver. Despite their critical role, little is known about the experiences of Samoan caregivers creating a knowledge gap that forestalls development of culturally appropriate ADRD interventions. Our overarching OBJECTIVE is to use a culturally grounded, explanatory sequential design to assess ADRD knowledge, attitudes and behaviors (KAB) of caregivers in American Samoa as a prelude to future interventions to better meet community needs. Our SPECIFIC AIMS are: 1) Determine caregivers’ ADRD KAB using established Westernized measurement tools (n=66), 2) Develop a preliminary Samoan caregiver ADRD KAB measurement tool (Samoan Tool), by 2a: incorporating Samoan epistemologies, cultural values, contextual understandings of ADRD, and social determinants of health with existing Westernized tools and constructs (focus groups, n=36), and 2b: assessing face and context validity of the Samoan Tool with a panel of experts (n=24). Our short-term goal is to determine ADRD KAB of Samoan caregivers, illuminate strengths related to Samoan culture, and clarify factors enhancing or detracting from ADRD care coordination and family unit well-being. Our long-term goal is to use these key insights to pilot test and validate the Samoan Tool and to develop culturally appropriate interventions that leverage cultural assets and promote family caregiving in the absence of sufficient formal resources.