What does dementia mean to you? Perceptions of dementia and aging among Indigenous older adults living in a Pueblo community

Background Alzheimer's disease (AD) and related dementias (ADRD) are a rapidly growing cause of morbidity and mortality in the United States, yet little is known about how these conditions are understood within American Indian (AI) communities. Limited alignment between biomedical models and community conceptualizations may hinder culturally appropriate care and research engagement. Objective This study aimed to explore how aging and dementia are conceptualized among older adults in a Pueblo community, with the goal of informing culturally congruent dementia care, education, and research practices. Methods In partnership with a local health and wellness center and tribal government, semi-structured interviews and questionnaires were administered to 32 older AI adults in a Pueblo community in New Mexico. Data were analyzed using thematic qualitative methods to identify perspectives on aging and dementia. Results Dementia was described as memory loss, diminished independence, or altered sense of self. Explanations of causation extended beyond biomedical models to encompass lifestyle, psychological, historical, and environmental factors. Conclusions Findings underscore the importance of understanding community-specific distinctions between “normal” and “abnormal” aging. Culturally grounded approaches that build trust, reduce uncertainty, and support open dialogue are essential for developing meaningful dementia education, assessment, and care that are community-driven and culturally responsive.