Fear of Dementia among Middle-Aged and Older Adults in China: Lived Experiences, Coping, and Support Needs
- 1Leiden University Medical Center
Abstract
BackgroundFear of dementia (FoD) can shape psychological well-being and responses to perceived cognitive change. Qualitative research has begun to show that dementia-related fear extends beyond memory loss to anticipated threats to independence, identity, and control. Less is known about how people manage these concerns in everyday life, what support they consider meaningful, and how these experiences unfold across sociocultural contexts. This study explored lived experiences of FoD, coping responses, and support needs among middle-aged and older adults in China.
MethodsIn-depth semi-structured interviews were conducted on adults aged 45 years and older with some concern about developing dementia. A fictional third-person vignette facilitated discussion of this potentially sensitive topic. Data were analyzed using Framework Analysis, with Theoretical Domains Framework domains providing a deductive higher-level structure and more specific subthemes developed through iterative, data-driven comparison within and across cases.
ResultsTwenty participants described fear of dementia as a socially embedded and future-oriented experience shaped by dementia-related knowledge, exposure, family roles, and concerns about autonomy, dignity, and burdening others. Coping strategies ranged from proactive self-management to avoidance and distraction, often supported by family members or peers. Participants consistently expressed a need for practical information, reassurance, and actionable strategies to maintain cognitive health. Preferred interventions were accessible, low-burden, and professionally guided. Although digital delivery was generally viewed as acceptable, engagement was perceived to depend on usability, trust, and digital literacy.
Discussion and ImplicationsFindings extend prior qualitative work on dementia-related anxiety by showing how fear is managed through both agency and avoidance and how support needs are embedded in relational and sociocultural contexts. Interventions addressing fear of dementia may benefit from being culturally sensitive, accessible, and responsive to users lived experiences. Attention to co-creation, participatory approaches, and equity may help support engagement and promote psychological well-being in ageing societies.
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BibTeX
@misc{dai2026fear,
title = {{Fear of Dementia among Middle-Aged and Older Adults in China: Lived Experiences, Coping, and Support Needs}},
author = {H. Dai and A. Versluis and R. Xu and W. Achterberg and H. Shen and N. Chavannes and J. Aardoom},
howpublished = {medRxiv},
year = {2026},
month = sep,
doi = {10.64898/2026.09.02.26361635},
url = {https://www.medrxiv.org/content/10.64898/2026.09.02.26361635v1},
note = {CC BY-NC-ND},
}
RIS
TY - UNPB
TI - Fear of Dementia among Middle-Aged and Older Adults in China: Lived Experiences, Coping, and Support Needs
AU - H. Dai
AU - A. Versluis
AU - R. Xu
AU - W. Achterberg
AU - H. Shen
AU - N. Chavannes
AU - J. Aardoom
PY - 2026
DA - 2026/09/02
PB - medRxiv
DO - 10.64898/2026.09.02.26361635
UR - https://www.medrxiv.org/content/10.64898/2026.09.02.26361635v1
AB - BackgroundFear of dementia (FoD) can shape psychological well-being and responses to perceived cognitive change. Qualitative research has begun to show that dementia-related fear extends beyond memory loss to anticipated threats to independence, identity, and control. Less is known about how people manage these concerns in everyday life, what support they consider meaningful, and how these experiences unfold across sociocultural contexts. This study explored lived experiences of FoD, coping responses, and support needs among middle-aged and older adults in China. MethodsIn-depth semi-structured interviews were conducted on adults aged 45 years and older with some concern about developing dementia. A fictional third-person vignette facilitated discussion of this potentially sensitive topic. Data were analyzed using Framework Analysis, with Theoretical Domains Framework domains providing a deductive higher-level structure and more specific subthemes developed through iterative, data-driven comparison within and across cases. ResultsTwenty participants described fear of dementia as a socially embedded and future-oriented experience shaped by dementia-related knowledge, exposure, family roles, and concerns about autonomy, dignity, and burdening others. Coping strategies ranged from proactive self-management to avoidance and distraction, often supported by family members or peers. Participants consistently expressed a need for practical information, reassurance, and actionable strategies to maintain cognitive health. Preferred interventions were accessible, low-burden, and professionally guided. Although digital delivery was generally viewed as acceptable, engagement was perceived to depend on usability, trust, and digital literacy. Discussion and ImplicationsFindings extend prior qualitative work on dementia-related anxiety by showing how fear is managed through both agency and avoidance and how support needs are embedded in relational and sociocultural contexts. Interventions addressing fear of dementia may benefit from being culturally sensitive, accessible, and responsive to users lived experiences. Attention to co-creation, participatory approaches, and equity may help support engagement and promote psychological well-being in ageing societies.
ER -