When Sanna Sartawy’s mother was diagnosed with dementia, the shock rippled through her large Lebanese Australian family. Despite having five sisters and two brothers, the family found themselves completely unprepared. “We didn’t know what to do with it,” Sanna recalled. “We had no knowledge of dementia or what is dementia.” Initially, Mrs Sartawy and her siblings misinterpreted Samiha Elmerhebe’s behaviours as simply the natural progression of aging. “She kept on repeating herself and forgetting things,” the 57-year-old from Sydney explained.
This lack of understanding was amplified by a prevailing stigma surrounding dementia within their community. Sanna remembers a particularly difficult experience at a large community festival. Her mother, Mrs Elmerhebe, failed to recognise family and friends who approached her, reacting with distress and agitation. “She reacted violently,” Sanna recounted. The fear of public judgment and hurtful comments, such as “Samiha has gone crazy now” or “she’s got that crazy disease,” led Sanna to feel she had to shield her mother from public view. Mrs Elmerhebe passed away in 2024, at the age of 83, twelve years after her dementia diagnosis.
The Growing Burden of Dementia in Australia
Dementia is now the leading cause of death in Australia, having surpassed heart disease in 2024, according to the Australian Bureau of Statistics. The scale of the issue is significant, with an estimated 446,500 Australians living with dementia in 2026. Alarmingly, around 28 per cent of these individuals were born in non-English speaking countries, as reported by Dementia Australia. Projections paint a stark future, with the Australian Institute of Health and Welfare warning that nearly 1.1 million people could be living with dementia by 2065 if substantial public health interventions are not implemented.
Experts highlight that a combination of factors, including a failure to recognise the early signs of dementia and the deep-seated stigma in some communities, often contribute to delayed diagnoses. This delay can have profound consequences for individuals and their families.
Challenging Stigma: A New Term for Dementia in Chinese Communities
In the Chinese language, the traditional term for dementia literally translates to “old-age idiocy and dullness disease.” This etymology alone carries a significant negative connotation, contributing to the fear and reluctance surrounding the condition. He Zihan, a 28-year-old PhD candidate specialising in Translation Studies and Multicultural Health Communication at the University of Sydney, has been a vocal advocate for changing this terminology. His personal experiences have fuelled his passion for this cause.
When He Zihan was just 12 years old, his grandmother suffered a severe cognitive decline following a car accident. Her family wished to have her tested for dementia, but she vehemently resisted. “But she was very resistant, because she didn’t think she was ‘idiotic’ or ‘dull’ at all,” he explained. “She just felt she was a bit forgetful.” This resistance ultimately led to a delay in treatment, and her condition worsened, culminating in her passing away two years after the accident.
“That’s when it really hit me — my grandma wasn’t ‘idiotic’ or ‘dull’. So why are we using such a strange term to describe this disease?” Mr He questioned. He observed a stark contrast in attitudes: “Many elderly people will check their heart, blood pressure and blood sugar without hesitation, but if you say you want to check for dementia, they resist. This long-standing stigma in the Chinese context causes delays in care.”
A More Respectful and Accurate Approach
Following extensive consultations with dozens of Chinese-speaking dementia experts across the Asia-Pacific region, Mr He and his colleagues successfully lobbied Dementia Australia to adopt a more appropriate term. In August, Dementia Australia officially embraced a new Chinese term for dementia: “cognitive impairment syndrome.” This phrase is more neutral and accurately reflects the nature of the condition.
Kaele Stokes from Dementia Australia acknowledged the pervasive and powerful nature of stigma and misinformation surrounding dementia. She noted that these issues can be even more pronounced within multicultural communities. “It [dementia] is actually a series of diseases of the brain that affect someone’s ability to function,” she clarified. “But lots of people don’t understand that it is a disease process, not a natural part of aging.”
Dr Stokes explained that the fear associated with dementia often leads people to avoid discussing it until it becomes unavoidable. “That all feeds into this idea that, dementia is a taboo subject and that we can’t talk about it and that it’s shameful in some way.” The adoption of the new Chinese term signifies Dementia Australia’s dedication to providing culturally sensitive, respectful, and responsive services. The organisation aspires for this new term to gain widespread recognition among Chinese speakers globally.
“It’s not just a change of name from A to B,” Mr He emphasised. “It helps reduce or even eliminate stigma and forms a new understanding of the disease. It’s not a normal part of aging, nor is it shameful, or a mental illness. It’s a brain condition that needs to be addressed.”
Planning for the Future: The Importance of Early Intervention
Lin Meifang and her husband, Zhao Chongguang, both in their 80s, relocated from mainland China to Sydney two decades ago. After experiencing a gradual decline in his cognitive abilities, Mr Zhao was diagnosed with dementia in early 2025. “At first, I noticed his severe memory decline,” Mrs Lin recounted. “What day is it today? What day of the week? He would ask, and then forget again, over and over.” Mrs Lin admitted to feeling frightened, and she believes the “old-age idiocy and dullness” stigma within the Chinese community contributed to the delay in her husband’s diagnosis.
Mrs Lin is her husband’s primary caregiver and receives some in-home support through a government-subsidised program. Dr Serge Geara, a neurologist of Lebanese heritage, echoed the sentiment that cultural stigma and shame frequently lead to delayed care and diagnosis for individuals with dementia.
“We are now in a time where there is going to be an explosion of increased treatments,” Dr Geara stated. “So picking up patients early with dementia and treating them can potentially decrease their deterioration at present and potentially improve them in the future when medications become better.”
Dr Stokes reinforced the critical importance of early detection and diagnosis, not just for individuals living with dementia but also for their families. “It means that there are conversations that can occur around how to plan for the future, where the person living with dementia can make decisions about what’s important to them, and what they want as their condition progresses.”
This advice resonated deeply with Sanna Sartawy. “They can have the choice of who they want to care for them, and where they want to live,” she said. Her mother, whose condition was initially dismissed as mere aging, lost the opportunity to make her own decisions. No one had informed her that a time would come when she would no longer be capable of doing so.
“Now I’ve got a dementia plan in for my kids. Make sure you take me to the beach. Make sure you take me and give me a massage every week,” Sanna shared, illustrating a proactive approach. “So now I know if I do get dementia, my kids know what to do.” This personal testament underscores the value of planning and open communication in navigating the challenges of dementia.
