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<\/p>\nWhen Sanna Sartawy’s mother was diagnosed with dementia, she and her siblings were shocked.<\/p>\n
Even though Mrs Sartawy came from a large Lebanese Australian family with five sisters and two brothers, they still struggled.<\/p>\n
“We didn’t know what to do with it,” she said.<\/p>\n
“We had no knowledge of dementia or what is dementia.”<\/p>\n
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Sanna Sartawy, right, thought her mother’s forgetfulness was part of normal aging.\u00a0<\/p>\n
\u00a0 (Supplied: Sanna Sartawy)<\/p>\n
Mrs Sartawy said the family initially misinterpreted Samiha Elmerhebe’s behaviours as ordinary signs of aging.<\/p>\n
“She kept on repeating herself and forgetting things,” the 57-year-old from Sydney said.<\/p>\n
Their lack of understanding of dementia was compounded by stigma around the disease within the community.<\/p>\n
Mrs Sartawy recalled the time she took her mother to a large community festival and Mrs Elmerhebe did not recognise family and friends who came to greet them.<\/p>\n
“She reacted violently,” Mrs Sartawy said.<\/p>\n
Mrs Sartawy felt she had to hide her mother from the public to avoid comments like “Samiha has gone crazy now” or “she’s got that crazy disease”.<\/p>\n
Her mother passed away at the age of 83 in 2024 \u2014 12 years after she was diagnosed with dementia.<\/p>\n
‘Why are we using such a strange term?’![\"A](\"https:\/\/www.newsbeep.com\/au\/wp-content\/uploads\/2026\/03\/916e12212185f2bcf8f14e3f40160063.jpeg\")
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Mr He grew up with his grandma and shared a very close bond with her. (Supplied: He Zihan)<\/p>\n
Dementia is the leading cause of death in Australia, overtaking heart disease in 2024, according to the Australian Bureau of Statistics.<\/p>\n
An estimated 446,500 Australians are living with dementia in 2026 and around 28 per cent were born in non-English speaking countries, Dementia Australia said.<\/p>\n
Nearly 1.1 million people could have dementia by 2065 without significant public health interventions, according to the Australian Institute of Health and Welfare.<\/p>\n
Experts say missing the signs of dementia and the stigma around the disease in some communities can lead to a delayed diagnosis.<\/p>\n
In Chinese, the term for dementia literally means “old-age idiocy and dullness disease”.<\/p>\n
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A more neutral Chinese term for dementia was adopted by Dementia Australia. (Supplied: He Zihan)<\/p>\n
He Zihan, a 28-year-old PhD candidate in Translation Studies, and Multicultural Health Communication at the University of Sydney, has been pushing for a change to the term after being inspired by his personal experience.<\/p>\n
When he was 12, Mr He’s grandma was involved in a car accident that led to severe cognitive decline.<\/p>\n
He said her family wanted to take her to the hospital to get tested for dementia.<\/p>\n
“But she was very resistant, because she didn’t think she was ‘idiotic’ or ‘dull’ at all,” he said.<\/p>\n
“She just felt she was a bit forgetful.”<\/p>\n
‘I watched my husband change’: Dementia diagnoses being missed, study finds<\/a><\/p>\n Dementia researchers are calling for changes to the way one of the most common forms of younger-onset dementia is diagnosed.<\/p>\n In the end, treatment was delayed, and her condition deteriorated. She passed away two years after that car accident.<\/p>\n “That’s when it really hit me \u2014 my grandma wasn’t ‘idiotic’ or ‘dull’. So why are we using such a strange term to describe this disease?” Mr He said.<\/p>\n “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.<\/p>\n “This long-standing stigma in the Chinese context causes delays in care.”<\/p>\n After consulting dozens of Chinese-speaking dementia experts in the Asia-Pacific region, Mr He and his colleagues encouraged Dementia Australia to adopt a term already used in Hong Kong.<\/p>\n In August, Dementia Australia took up a more neutral and accurate Chinese term for dementia \u2014 “cognitive impairment syndrome”.<\/p>\n ‘Not a natural part of aging’<\/p>\n Kaele Stokes, from Dementia Australia, said stigma and misinformation around dementia were “incredibly strong”.<\/p>\n And the topic can be even more taboo in multicultural communities, she said.<\/p>\n “It [dementia] is actually a series of diseases of the brain that affect someone’s ability to function,” she said.<\/p>\n “But lots of people don’t understand that it is a disease process, not a natural part of aging.”<\/p>\n Kaele Stokes says it is important to break down taboos when talking about dementia. (ABC News: Scott Jewell)<\/p>\n Dr Stokes said there was a lot of fear around dementia so people did not want to talk about it until “they absolutely have to”.<\/p>\n “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.”<\/p>\n![\"A](\"https:\/\/www.newsbeep.com\/au\/wp-content\/uploads\/2026\/03\/60155dc236cd912ae84b2eee95b29631.jpeg\")
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