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

Published online by Cambridge University Press:  13 October 2020

Perla Werner ,
Natalie Ulitsa ,
Daphna Shephet ,
Hanan Abojabel ,
Zümrüt Alpinar-Sencan  and
Silke Schicktanz
Perla Werner*
Affiliation:
Department of Community Mental Health, University of Haifa, Haifa, Israel
Natalie Ulitsa
Affiliation:
Department of Community Mental Health, University of Haifa, Haifa, Israel
Daphna Shephet
Affiliation:
Shalvata Mental Health Care Center, Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel
Hanan Abojabel
Affiliation:
Department of Community Mental Health, University of Haifa, Haifa, Israel
Zümrüt Alpinar-Sencan
Affiliation:
Department of Medical Ethics and History of Medicine, University Medical Center, Göttingen, Germany
Silke Schicktanz
Affiliation:
Department of Medical Ethics and History of Medicine, University Medical Center, Göttingen, Germany
*
Correspondence should be addressed to: Perla Werner, Department of Community Mental Health, University of Haifa, Mt. Carmel, Haifa, Israel. Phone: +972 54 3933066. Email: [email protected].
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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.

Keywords

dementia feardementia worryfear of Alzheimer’s diseasefearcross-cultural
Type
Original Research Article
Information
International Psychogeriatrics , Volume 33 , Special Issue 10: Issue Theme: Non-cognitive Concerns in People with Dementia , October 2021 , pp. 1019 - 1034
Copyright
© International Psychogeriatric Association 2020

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