Illness representations among first-degree relatives of people with Alzheimer disease

The purpose of this study was to examine attitudes, beliefs, and experiences regarding Alzheimer disease (AD) among patients' first-degree relatives, a group that is at increased AD risk and often involved in health care decision-making for affected family members. Children and siblings (N = 203; age range, 30-92 years; 75% female) of people with AD completed a questionnaire (response rate, 90%) that assessed mental representations of AD, including knowledge, cause and treatment beliefs, distress, and perceived threat. In general, relatives were knowledgeable about AD, had an accurate sense of their disease risk, and endorsed etiologically significant factors as causes. Nonetheless, many participants held misconceptions about AD (e.g., most cases are hereditary) and what may be unrealistic expectations for future treatment developments. Levels of perceived distress and threat were generally high and associated with female gender and younger age. AD represented the foremost health concern of approximately one third of first-degree relatives. Health education efforts are needed to address misconceptions about AD genetics and to disseminate information about the availability of effective treatments. Further research on illness representations is needed to better understand coping and decision-making among those at risk for AD.