Maria Stefanou describes her mother as a kind, traditional Greek woman who was known for her cooking, her kindness, and her love for her family.
The family migrated to Melbourne from central Greece in 1968 and spent their lives in the inner suburb of Richmond.
When Maria’s mother Fotini was diagnosed with dementia at age 71, her father cared for her in their home for five years, until the family had to make the difficult decision of placing her into full-time care.
“My father got so depressed after he relinquished care of mum, the guilt that he felt was just awful,” said Maria.
“I rang our local priest and I said to him, 'Look, my father's really not coping. We've just put mum into a nursing home. Can you please give him some support?'
“He rings my dad and he says: 'Oh, what you need is just to put the music on and dance. What are you upset about? Just put the music on.' I was furious.”
Maria, who works in aged mental health in a large metropolitan health service, has worked with thousands of people with dementia. Due to her years of experience, she was the first to spot the early changes in her mother's behaviour.
Like in many cultures across the world, she said dementia is stigmatised in the Greek Orthodox community.
“There's a sense of embarrassment or shame. You don't tell people,” she said.
“Even when you do tell people, there's often a lack of support.
“People just don't know what to do.”
To raise awareness, Maria agreed to participate in short web films sharing information to Greek communities about the support and resources available.
"Sometimes you can tell the families what services are available, but they don't want to use them," she said.
"But at least if they know they're available further down the track, they may come back and say, 'Well, now I need assistance.'"
The project, Moving Pictures, was established in 2019 and recently launched a new suite of videos in Italian, Greek, Vietnamese and Spanish.
Maria said that she hopes the films will help normalise the experience of dementia and "demystify" the condition.
“Most of the Greeks that came out here in the 50s and 60s are now old, and there's so many of them that are suffering from dementia,” she said.
“But dementia is no respecter of ethnicity, race or education.
“These films are great not only for the clients and the carers, but the general community to also educate them about what dementia is and how they can support those that are affected by it.”
Around one-third of Australia’s population is made up of people who belong to culturally and linguistically diverse (CALD) communities, according to the ABS.
Professor Bianca Brijnath, who has led the project for four years, said that utilising the lived experiences of carers was a powerful tool to draw attention to the issue.
“It's been really overwhelmingly positive,” she told Aged Care Insite.
“I think because these resources are co-produced, they tend to have a greater currency with their communities. And I think that's the critical difference.
“There's nothing quite like people telling their own stories to have that transformative effect.”
According to Brijnath, the latest set of films have now reached 1,500 people belonging to CALD communities.
Themes in each story explore the significant role of family, direct communication, feelings of guilt and shame, and the importance of self-care.
Brijnath hopes the films will encourage providers who do not deliver ethnic-specific services to consider the challenges diverse communities face when accessing care.
“When you've got emerging older multi-lingual communities such as south Asian Indian, Hindi and Tamil communities, the ethnic-specific resources are very few and far between,” she said.
“For more established communities, such as Italian, Greek or the Chinese communities, they've got more ethnic-specific organisations around the country, so they tend to be able to get better services and better access to My Aged Care.”
The short, three-to-five-minute films are designed for those who may not have a lot of time on their hands, or who cannot read or write.
The project is also mobile optimised so that people who don’t own a computer can access it.
“It also bypasses barriers of geography, so if you're staying in regional or rural Australia and you don't speak a language or you don't speak English very well, and you're kind of struggling, then this is a starting point.”
Brijnath said that in the future the project will expand overseas to Moving Pictures India.
So far, the response from families and carers in diverse communities has been extremely positive, according to a recent survey carried out by Moving Pictures.
“We certainly found in the survey responses that the community said that they had a better understanding of where to call for help or where to direct people for help,” said Brijnath.
“They felt that their films would help people in their communities have a greater understanding of dementia.”Do you have an idea for a story?
Email [email protected]