Fear about Alzheimer’s disease among Israeli and German laypersons, persons with Mild Neurocognitive Disorder and their relatives: a qualitative study

Abstract

OBJECTIVES: Alzheimer's disease (AD), the most common type of dementia, is one of the most feared diseases, obstructing help-seeking, and leading to discrimination. While research interest in fear of developing AD is increasing, little is known about its characterization, triggers, and consequences, especially among different cultures. In this study, we aimed at exploring and characterizing AD fear as experienced by laypersons (LP), persons with Mild Neurocognitive Disorder (MND), and their relatives, in Israel and Germany. DESIGN: A qualitative study using focus groups (FGs) and semi-structured interviews was used. Thematic content analysis was conducted to extract key themes. SETTING: Israeli and German not yet diagnosed people. PARTICIPANTS: The study included a total of 130 participants (63 Israeli and 67 German participants) representing 3 groups: LP (n = 82), persons with MND (n = 28), and relatives of persons with MND (n = 20). RESULTS: Two overarching themes were identified across groups and countries: fear of developing AD and fear of stigmatization. Other types of fear, such as fear of a person with AD, fear about the impact of a diagnosis of AD on family members, fear of becoming a caregiver, and fear of losing one's self-determination because of developing AD, were specific to a group type or country. Different types of fear were awakened by different triggers, and were dealt with different coping strategies.