The meaning of dementia-related changes in persons with ADRD: an interpretive phenomological exploration of African American caregivers' perceptions

This interpretive phenomenological study explored the meanings African American caregivers ascribe to dementia-related changes in family members. Eleven caregivers in the Pacific Northwest participated in two interviews over six weeks, analyzed using hermeneutic methods. Two themes emerged: caregivers emphasized preserving personhood and perceived loved ones as “still here,” despite cognitive decline. These meanings were shaped by historical, religious, and social contexts. Findings have implications for culturally sensitive care, long-term care planning, and addressing grief in African American caregivers, offering insights for cross-cultural interventions to improve caregiving experiences.