Breaking dementia stigma among Chinese Australian communities

A group of researchers is urging Chinese Australians to recognise dementia symptoms and seek early diagnosis by launching a program aimed at dismantling the social stigma, shame and misconceptions surrounding the disease.

Statistics reveal that over 400,000 Australians are living with dementia, with 12,000 residing in Western Sydney alone. Shockingly, approximately half of these individuals remain undiagnosed.

The Face Dementia campaign, conducted in both online and in-person formats in Western Sydney, offers free resources to facilitate conversations within the community about dementia-related concerns and encourages individuals to approach their GP for assessment.

Fear of stigma and common misconceptions often deter Chinese Australians living with dementia from seeking support.

“We know that people from diverse cultural backgrounds, including Chinese Australians, delay seeking help for dementia symptoms,” says Lee-Fay Low, a Professor in Ageing and Health at the University of Sydney.

“Our research with the Chinese Australian community shows there is poor understanding that dementia is a brain disease. Rather, symptoms of dementia are often incorrectly attributed to being a normal part of old age or mental illness, rather than a health problem where you can seek treatments and support.”

While there is currently no cure for dementia, diagnosis is crucial as it enables individuals to access treatments, rehabilitation and therapies.

The Face Dementia campaign seeks to promote new terminology for dementia in Chinese, moving away from outdated and stigmatising phrases.

“Traditionally, dementia has been mistakenly called ‘老年痴呆症 (Simplified Chinese) / 老人癡呆症 (Traditional Chinese), ‘lǎo nián chī dāi zhèng’ in Mandarin or ‘lou yen qi ngoi jing’ in Cantonese’, which means ‘Old People’s Delusional and Dummy Disease’,” explains Cedric Cheng, a campaign officer at the University of Sydney. “We’d like to change that because that phrase deepens the stigma.”

“The phrase implies dementia is only associated with the elderly and has negative connotations such as having decision-making and memory issues. This old terminology is not accurate and could have contributed to the unwillingness of Chinese Australians to ask for help.”

Dr. Lina Lee, a geriatrician at Blacktown Hospital, emphasises the importance of timely diagnosis, regardless of age or cultural background.

“Some people don’t think it’s important to discuss their thinking problems with their GP because they see this as normal for older people. As their symptoms worsen, they might be worried about stigma. But dementia is a health problem – it is not a normal part of aging, and a timely diagnosis can provide access to treatment to slow progression and support to continue living well.”

The research team is also implementing a program in General Practices across Western Sydney to improve dementia diagnosis rates.

Sydney resident Mary*, diagnosed with dementia at 67, stresses the importance of early diagnosis. Aunty Wong*, another resident, encourages others to be proactive in recognising dementia signs and seeking help.

Dr Lee suggests that a cognitive screen, part of a comprehensive annual assessment for seniors over 75, can help monitor changes and reduce dementia risk.

The Face Dementia campaign aims to empower Chinese Australians to confront dementia without fear, ensuring early diagnosis and improved quality of life.

Ritchelle Drilon

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Ritchelle is a Content Producer for Healthcare Channel, Australia’s premier resource of information for healthcare.

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