What Latino Puerto Ricans and non-Latinos say when they talk about Alzheimer's disease.

BACKGROUND To discover whether Latino Puerto Rican and non-Latino communities differ in the words they use to talk about Alzheimer's disease (AD). METHODS Four groups of 30 persons per group defined by self-identified ethnicity and caregiver status: Latino Puerto Ricans and non-Latino Whites, who were either caregivers or non-caregivers completed free-listing exercises to identify the words they use when they describe AD causes, symptoms, caregiving, and research risks and benefits. RESULTS Both Latino Puerto Ricans and non-Latino Whites recognize AD as a disease of memory loss and other cognitive problems. Although both groups used the term "sadness" to describe AD, non-Latino Whites did not feature emotional, behavioral, or psychological problems as among the causes of AD. Although all the groups' descriptions of a person who lives with and cares for a person with AD shared the word "loving," Latino Puerto Ricans focused on a good spouse who exercises intelligence, patience, and attention on behalf of the person with AD and did not use the term "caregiver." In contrast, non-Latino Whites typically used the term "caregiver." Both groups' lists shared words that describe research as presenting harms to an AD patient and requiring a commitment of time. Latino Puerto Ricans' lists suggested an understanding of research benefits akin to clinical care. CONCLUSIONS Notable differences exist in how Latino Puerto Ricans and non-Latino Whites talk about AD and AD research. Clinicians, clinical investigators, and patient educators need to consider these differences when they conduct clinical care and research and design outreach and educational materials.