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The vicious cycle of stigma: A multi-level analysis of dementia help seeking and care in Malaysia
Goh, Nurul Syasya Mohd Ridzwan Tan, Chia Zhen Murugayah, Thurgambikai Subramaniam, Ponnusamy
Goh, Nurul Syasya Mohd Ridzwan
Tan, Chia Zhen
Murugayah, Thurgambikai
Subramaniam, Ponnusamy
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Other contributors
Epub Date
Issue Date
2026-03-02
Submitted date
Alternative
Abstract
BACKGROUND
Dementia stigma impedes timely diagnosis in low- and middle-income countries. This study examines how cultural, social, and structural factors influence stigma in Malaysia's multiethnic context.
METHODS
In-depth interviews with 18 caregivers in urban and rural Malaysia were analyzed thematically using the Integrated Dementia Stigma Framework.
RESULTS
Stigma forms a self-reinforcing cycle. Families attribute symptoms to “madness” or normal aging, prompting concealment (micro). Cultural norms like filial piety prescribe family caregiving as a moral duty, reinforcing isolation (meso). Structural stigma, including clinical dismissal and service scarcity, validates family inaction and worsens urban–rural inequities (macro). Two interlocking pathways emerge: a legitimation pathway where medical dismissal confirms family hesitation and an entrapment pathway where cultural obligation and poor infrastructure trap caregivers.
DISCUSSION
Dementia stigma in Malaysia drives low diagnosis rates. Multilevel interventions integrating public education, culturally appropriate community support, and healthcare reform are essential to break the cycle.
Citation
Lim JNW, Goh NSMR, Tan CZ, Murugayah T, Subramaniam P. (2026) The vicious cycle of stigma: A multi-level analysis of dementia help seeking and care in Malaysia. Alzheimer's and Dementia: Diagnosis, Assessment and Disease Monitoring, 18 (1), article e70290. https://doi.org/10.1002/dad2.70290
Publisher
Research Unit
PubMed ID
41783039 (pubmed)
PubMed Central ID
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Type
Journal article
Language
en
Description
© 2026 The Authors. Published by Wiley. This is an open access article available under a Creative Commons licence.
The published version can be accessed at the following link on the publisher’s website: https://doi.org/10.1002/dad2.70290
Series/Report no.
ISSN
2352-8729
EISSN
2352-8729
ISBN
ISMN
Gov't Doc #
Sponsors
This article was developed as part of the project “An interdisciplinary research network for dementia: Paving the way to transform prevention and timely diagnosis for dementia in Malaysia” and funded by the Academy of Medical Sciences UK Global Research Fund Networking Grant (Reference No.: NGRI -1092).
Rights
Licence for published version: Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International