Genes or stress? Ethnic perceptions about the causes of Alzheimers Disease

Abstract

Background: Understanding how different cultures perceive Alzheimers Disease assures that AD prevention research design, recruitment, and public education effectively reach the U.S. population. One element of successful prevention strategies is targeting the causes of AD. Unfortunately, we know little about how different cultures perceive these causes. Objective: To compare concepts about the causes of AD among Latino and white caregivers. Methods: Thirty white caregivers and 30 Latino caregivers from the Puerto Rican community who were enrolled in an NIA AD Center participated in a freelisting interview. Freelisting is an anthropological research method that identifies the terms that define a given domain and determines the degree to which there is a shared level of knowledge among members of a cultural group about that domain. Freelists are analyzed to calculate word saliency and group knowledge about the domain. Saliency is a function of word frequency and the position of the word on each person’s list. Results: “Genes” was the most salient and frequent cause of AD for both groups. However, white caregivers (19/30) were more likely than Latinos (9/30) to mention “genes” first and frequently (exact p 0.02 for comparison of frequency, saliency score for non-Latinos 0.547 versus 0.197 for Latinos). Comparison of the words mentioned by at least 10% of each ethnic group showed that both groups listed biological, behavioral, and environmental causes. Latinos also listed mental illnesses or negative emotions: “loneliness,” “stress,” “worrying,” “problems in life,” “emotional problems,” “depression,” and “suffering.” We combined the two ethnic groups together to examine associations among ethnicity and the words mentioned by at least 10% of both groups. Latinos are more likely to mention “stress” and whites are more likely to mention “genes,” “plaques,” “lack of brain activity,” and “environment.” No ethnic differences were found with “trauma,” “nutrition,” “aging,” or “brain deterioration.” Conclusions: Latinos and Whites have mutual understandings of AD’s potential causes: genes, trauma, nutrition, aging and brain deterioration. However, Latinos have an entirely unique category of cause mental illnesses or negative emotions that features “stress.” Prevention studies and public awareness need to incorporate this category into communication to Latinos about AD.