We conducted a qualitative study to explore the lived experiences of dementia in Sabah and Klang Valley. Analysis of the interviews revealed the two major themes that shape how dementia is recognised and managed: misconceptions and stigma, and the journey families navigate when seeking diagnosis and care.
MISCONCEPTIONS AND STIGMA
Our interviews in Sabah and the Klang Valley highlight how dementia is often misunderstood as a normal part of ageing. Many participants described memory loss, confusion, and forgetfulness as typical signs of growing older rather than symptoms of a medical condition. At the same time, dementia remains a sensitive and stigmatized topic. Concerns about shame, social judgement, and family reputation can lead some families to hide symptoms, making it difficult to talk openly about dementia or seek support.
Despite differences in geography and community context, similar patterns emerged across both Sabah and the Klang Valley. Participants described widespread misconceptions about dementia and a reluctance to discuss symptoms outside the family. To better understand these dynamics, we developed the Integrated Dementia Stigma Framework to analyse stigma across individual, family, community, and health system levels. Using this framework, our findings highlight a “vicious cycle of stigma,” where misunderstanding, silence, and delayed help-seeking reinforce one another and limit access to timely diagnosis and care. The analysis also identified two pathways through which families navigate dementia: one where stigma and misconceptions delay recognition and care, and another where awareness and support enable earlier help-seeking.
These insights are discussed in more detail in our published study:
Lim JNW, Goh NSMR, Tan CZ, Murugayah T, Subramaniam P.
The vicious cycle of stigma: A multi-level analysis of dementia help seeking and care in Malaysia. Alzheimer’s Dement.
2026;18:e70290. https://doi.org/10.1002/dad2.70290
Misunderstandings and stigma often shape the first steps families take when dementia symptoms appear. To understand what happens next, we explored the dementia journey on how families recognise changes, seek help, and navigate care.
THE DEMENTIA JOURNEY: RECOGNISING SYMPTOMS AND SEEKING CARE
To understand how families recognise dementia and seek support, we explored the dementia journey using the Candidacy Model alongside a needs-based approach. This framework helps explain how people identify health needs, navigate services, and access care. Interviews in the Klang Valley and Sabah revealed several stages that shape families lived experiences of symptoms recognition, seeking diagnosis and managing care.
Stage 1: Identifying and Interpreting Symptoms
The journey often began with subtle changes in memory or behaviour. Many families initially interpreted memory loss, confusion, or personality changes as part of normal ageing. In some cases, dementia was recognised only after a crisis or sudden behavioural change, while others attributed symptoms to stress, laziness, or even supernatural causes. Prior medical knowledge sometimes helped families recognise dementia earlier.
Stage 2: Navigating Healthcare Services
Once families recognised that help might be needed, navigating the healthcare system could be challenging. Some participants accessed diagnosis through personal networks or supportive clinicians, while others faced long waiting times, fragmented services, or misdiagnosis. In some cases, families were discouraged from pursuing further tests because the person was considered “too old.”
Stage 3: Accessing Support and Care
Families often had to navigate complex systems to obtain appropriate support. Barriers such as language differences, financial pressures, and limited specialist services influenced access to care, particularly outside major urban centres. Participants described uncertainty about where to seek help and difficulty identifying available services.
Stage 4: Care Decisions and Ongoing Support
Across both Sabah and the Klang Valley, most families preferred to care for relatives at home, often viewing institutional care as a last resort. Care responsibilities were frequently shared among family members. Some families used day care or residential services where available, although participants also described difficulties finding suitable support services.
Key Insights from the Dementia Journey
- Recognition of dementia often occurred late, frequently after a crisis or major behavioural change.
- Misconceptions about ageing and dementia delayed help-seeking, particularly where awareness of dementia was limited.
- Families faced challenges navigating healthcare systems, including long waiting times, fragmented care, and misdiagnosis.
- Cultural beliefs, stigma, language barriers, and financial pressures influenced access to care.
- Most families preferred home-based care, but support services were often difficult to identify or access.
ACTIVITIES IN SABAH
Several activities were delivered in Sabah to raise awareness about dementia and brain health, and to share research insights with local Alzheimer’s Association and communities..
- Public talk on Dementia and Brain Health
A talk was delivered at the Institute for Development Studies (Sabah) in Kota Kinabalu on 31st October 2023, focusing on raising awareness about demnetia and promoting understanding of brain health. - Keynote presentation at a dementia awareness event
Delivered a keynote talk at the Sabah Alzheimer’s Association awareness event on 23 November 2024. The presentation highlighted the importance of dementia awareness and support for families. - Research findings sharing session
Presented findings from the Sabah interviews to the committee and members of at the Sabah Alzheimer’s Association and local communities on 23rd November 2024. This event provided a platform to discuss local experiences and support needs.