JMIR Publications

ABSTRACT

Background:

Fear of dementia (FoD) can affect psychological well-being and how people respond to perceived cognitive changes. Although interventions addressing FoD have begun to emerge, evidence remains limited on how best to support people experiencing these concerns. A better understanding is needed of how people experience FoD, how they respond to these concerns in everyday life, and what forms of support they consider meaningful and acceptable.

Objective:

This study aimed to explore how middle-aged and older adults in China experience FoD, how they cope with these fears, and what forms of support they consider meaningful and acceptable. The study was situated within a broader CeHRes Roadmap–guided programme for developing support for FoD.

Methods:

We conducted in-depth semi-structured interviews with adults aged 45 years and older who reported some concern about developing dementia. A fictional third-person vignette was used to facilitate discussion of this potentially sensitive topic. Data were analyzed using Framework Analysis, with the Theoretical Domains Framework providing a higher-level deductive structure and more specific subthemes developed through iterative, data-driven comparison within and across cases.

Results:

Twenty participants described FoD as a future-oriented experience shaped by dementia-related knowledge and exposure, family relationships, and concerns about autonomy, dignity, and burdening others. Coping ranged from proactive self-management to avoidance and distraction, with family members and peers often providing reassurance and support. Participants wanted clear and practical information, reassurance, and actionable strategies for maintaining cognitive health. They preferred support that was accessible, low-burden, and professionally guided. Digital delivery was acceptable to many participants, but its usefulness depended on usability, trust, and digital confidence.

Conclusions:

FoD was experienced not only in relation to possible cognitive decline but also through anticipated changes in autonomy, identity, dignity, and family relationships. Participants responded to these concerns in different ways, ranging from efforts to maintain control to avoidance and distraction. Their accounts also showed that meaningful support needs to address uncertainty and emotional concerns alongside practical needs for information and strategies. These findings deepen understanding of how FoD is experienced and managed and provide evidence to inform the development of support that is responsive to people's needs and everyday circumstances.