OBJECTIVES: To understand how people differentiate normal memory loss from Alzheimer's disease (AD) by investigating cultural models of these conditions.
DESIGN: Ethnographic interviews followed by a survey. Cultural consensus analysis was used to test for the presence of group models, derive the “culturally correct” set of beliefs, and compare models of normal memory loss and AD.
SETTING: Chicago, Illinois.
PARTICIPANTS: One hundred eight individuals from local neighborhoods: African Americans, Mexican Americans, and refugees and immigrants from the former Soviet Union.
MEASUREMENTS: Participants responded to yes-or-no questions about the nature and causes of normal memory loss and AD and provided information on ethnicity, age, sex, acculturation, and experience with AD.
RESULTS: Groups held a common model of AD as a brain-based disease reflecting irreversible cognitive decline. Higher levels of acculturation predicted greater knowledge of AD. Russian speakers favored biological over psychological models of the disease. Groups also held a common model of normal memory loss, including the important belief that “normal” forgetting involves eventual recall of the forgotten material.
CONCLUSION: Popular models of memory loss and AD confirm that patients and clinicians are speaking the same “language” in their discussions of memory loss and AD. Nevertheless, the presence of coherent models of memory loss and AD, and the unequal distribution of that knowledge across groups, suggests that clinicians should include wider circles of patients' families and friends in their consultations. These results frame knowledge as distributed across social groups rather than simply the possession of individual minds.