Jody Friedman was the owner of a successful IT recruitment business for almost a decade.
Now, she struggles to use a computer.
The 57-year-old was diagnosed with younger onset dementia two years ago but says her symptoms began long before that.
"I couldn't work anymore, I couldn't read, I couldn't write, there was nothing for me to be able to do, it was the most awkward time of my life," she tells SBS News.
"I didn't know what had happened, how this had happened, and I didn't know what it was?"
Jody Friedman with her partner Leigh Sackville. Source: Supplied
At first, doctors suspected Jody was experiencing mental illness and referred her to a psychiatrist for treatment.
When that didn't help, she returned to her GP for answers.
"Once I found out about the dementia, it sort of resonated in a really odd way," she says.
"But it took me a long time to come to terms with the situation and the whole disease."
Jody Friedman and her partner Leigh Sackville. Source: SBS
Jody is speaking out as part of Dementia Action Week (16-22 September) to promote its theme ‘Dementia doesn’t discriminate. Do you?’.
She says it can be hard for others in the community to understand her condition and remembers one instance when a stranger yelled at her because she forgot how to safely cross the road.
"I got completely disorientated, didn't know where I was going and I was quite frightened," she says.
"This guy was just so rude, saying there was something wrong with me."
In Australia, about 447,000 people live with a type of dementia. One in 13 of them are aged in their 30s, 40s and 50s.
Alzheimer's Australia CEO Maree McCabe says younger people with the disease often feel extra stigma and discrimination.
"Unfortunately, there's a myth that dementia only affects older people and that's not the case," she says.
"The sorts of comments that might be made are: 'you don't look like you've got dementia', 'I have memory problems all the time, you're fine' ... and it really invalidates the profound impact that dementia actually has on the lives of people with younger onset dementia."
Language barriers
Ms McCabe says migrants and older Australians of non-English speaking backgrounds with dementia can also face racial discrimination.
Sarah Shi is a full-time carer for her 84-year-old mother Lian Ying Gao, who was diagnosed with dementia in 2013.
Sara Shi with her mother Lian Ying Gao. Source: Supplied
Lian was born in China, speaking Russian as her first language before learning Chinese.
She came to Australia in 1986 and understands limited English, but has found support through So Wai Seniors Wellness Centre, a service created for ageing Australian people of Chinese, South-East Asian and other backgrounds in Burwood, Sydney.
"My mother came here and I think she really enjoyed herself, so that sort of lifted the burden off me as well, I treat it as a respite care centre," Sarah says.
Sarah Shi (r) is a carer for her mother Lian Ying Gao. Source: SBS
At the centre, visitors play multilingual card and board games, practice writing Chinese calligraphy, and cook dumplings together.
Sarah says the group activities have helped slow down the progress of her mother's condition and improved her memory.
"It gives them a sense of belonging, and in this centre, they're very well respected so I think in that sense they have the dignity as well, they feel loved and their confidence goes up."
Seniors participate in memory games at the So Wai Wellness Centre. Source: SBS
"So Wai Wellness Centre is a great example of an ethnic-specific service," she says.
"What we hope to see is more partnerships between culturally and linguistically diverse communities and mainstream services, so that they have a few people or staff who speak different languages in the facility."
