Initiative Aims to Destigmatize Dementia in Chinese Australian Communities

A team of researchers is encouraging Chinese Australians to recognise dementia symptoms and reach out to get an early diagnosis, by launching a program to break down the social stigma, shame and misconceptions about the disease.

Statistics show more than 400,000 Australians are living with dementia, with 12,000 people living with dementia in Western Sydney. Around half of the people living with dementia remain undiagnosed.

The Face Dementia Chinese language campaign is launching in Western Sydney to provide free online and in person resources to help the community start conversations with family about dementia-related concerns and ask their GP for an assessment.

Chinese Australians living with dementia are often reluctant to seek support because fear of stigma and common misconceptions.

“We know that people from diverse cultural backgrounds, including Chinese Australians, delay seeking help for dementia symptoms,” says Lee-Fay Low, 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 we don’t yet have a cure for dementia, diagnosis is essential for all people with dementia as it helps them to access treatments, rehabilitation and therapies,” says Dr Low.

The Chinese-language campaign in Western Sydney aims to promote new terms for the word dementia in Chinese, by updating previously common terms for dementia.

“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’. We’d like to change that because that phrase deepens the stigma,” said University of Sydney Chinese campaign officer, Cedric Cheng.

“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.”

Mr Cheng says the Face Dementia campaign uses new terms including ‘brain degeneration’ and ‘cognitive impairment’ to encourage the Chinese community to view dementia as a health concern they should not be ashamed of.

“We want to raise awareness and encourage Chinese Australians in Western Sydney to ‘Face Dementia’ rather than ignore the signs. Our expert team has developed resources including a website in Simplified Chinese and a checklist to help people with concerns identify changes and talk about this with their doctors,” says Mr Cheng, who also works with clinicians to bring free educational presentations in Chinese language to the Western Sydney area.

Dr Lina Lee, a geriatrician based in Blacktown Hospital, Western Sydney says a timely diagnosis, regardless of age, cultural background or disease progression, allows patients and their families adjust, plan ahead, and make lifestyle changes. This may slow the progression of dementia and significantly improve their quality of life.

“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.”

Dr Lee and the research team are also running a simultaneous practice improvement program in General Practices in Western Sydney to improve timely diagnosis of dementia.

Sydney resident, Mary*, moved from Shanghai, China to Sydney 10 years ago with her husband to join her children. Before retiring, Mary was a university lecturer. She was diagnosed with dementia aged 67. She was a support person for her husband who was living with dementia. However as her symptoms worsened she realised it was important to talk to a doctor and seek extra help. She said she was lucky that she already had some knowledge and awareness on dementia and it helped her initiate a conversation with her doctor.

Aunty Wong*, was born and raised in Guangzhou, China and she spent much of her adult life in Macau and Hong Kong. She moved to Sydney 15 years ago to look after her grandchildren. Aunty Wong always took pride in her cookery skills and role as a homemaker. 5 years ago, she started to notice that she had become more forgetful and careless to an extent she started a fire in her kitchen almost injuring herself and her granddaughter. Aunty Wong then started to blame herself. Aunty Wong and her family then decided immediately that they should speak to their doctor. A diagnosis helped her understand her symptoms were caused by disease. The family wished they had talked to their GP earlier as the diagnosis led to them receiving education about how to change her environment and support her to function better. She also found connecting with other people living with dementia helped her to adjust and better understand her diagnosis.

“I want to encourage others to be aware of the signs of dementia. Be firm in advocating for yourself, and to get an early diagnosis,” said Aunty Wong.

Dr Lee said:

“A cognitive screen can be done as part of a comprehensive annual assessment for senior Australians over 75 years. It is a good way to get a baseline, so your GP or practice nurse can monitor changes. They can also help you to improve your brain health and reduce your risk of dementia,” she said.