New ways to help immigrant communities navigate dementia

More than 430,000 Australians, or about one in every 67 people, have dementia. They must cope with memory loss, confusion, behavioural and mood changes, communication problems, and other distressing symptoms.

Another 1.7 million Australians are involved in caring for someone with dementia — caused by a number of conditions, the most common of which is Alzheimer’s disease.

For Dr Diana Karamacoska, a cognitive neuroscientist at Western’s National Institute of Complementary Medicine, her first real brush with dementia came during her PhD, when two of her grandparents were diagnosed.

It was an incredibly stressful time for her family, she recalls: “We didn’t anticipate the number of hurdles we were going to encounter whilst navigating the healthcare system.”

To make the situation more difficult, Karamacoska’s grandparents were Macedonian immigrants who spoke little English.

“A lot of diagnostic tools that we use here are in English,” she says. “Also, they’re not culturally appropriate. For instance, they include questions such as ‘who is the Prime Minister of Australia?’, which don’t necessarily relate to these individuals and aren’t good indicators of their cognitive capacities.”

Initially, Karamacoska thought her family’s struggles were unique. But as she met others in a similar situation, she realised there was a larger, more systemic problem. She wanted to discover how people with dementia and carers from non-English speaking communities could be better supported on their dementia journey.

Chatting with colleagues and collaborators led to an idea — a series of education workshops, conducted in multiple languages, that were tailored to the needs of immigrant communities to help them learn more about dementia. “The aim was to raise awareness and reduce stigma through culturally relevant education, particularly in western Sydney communities that are often overlooked in mainstream programmes,” says urban planning expert Professor Nicky Morrison, co-director of Western’s Urban Transformations Research Centre and one of Karamacoska’s collaborators.

PLUGGING GAPS
The research team — which also included Professor Ann Dadich, a psychologist at the School of Business, and Associate Professor Joyce Siette, who studies brain health at the MARCS Institute for Brain, Behaviour and Development — partnered with a local dementia support group, service providers, and other experts to co-design a workshop programme called ‘Dementia Friends Unite’. Their insights were key to identifying the specific challenges that people from culturally and linguistically diverse backgrounds face, says Karamacoska, and helped shape the workshop’s content.

“We learnt, for instance, that a lot of people were struggling with understanding what dementia is, how to recognise it, and where to get help,” says Dadich.

Fellow collaborator Donna Lee, a 61-year-old person living with dementia and mother of four, explains: “When I was diagnosed more than a decade ago, no one told me where to go or what to do. I found it hard, even though I speak English. I can only imagine how much harder it would be for someone who doesn’t speak the language.”

As a result, the team made it a focus to cover a lot of foundational material in their programme, “so really explaining how the brain functions and changes with age, what the key signs and symptoms of Alzheimer’s disease and dementia are, and then unpacking the causes and risk factors,” says Karamacoska.

The programme also included tips on how to cope emotionally, how to continue living a full life, and potential ways to help slow the progress of dementia, such as eating healthily, exercising regularly and keeping socially active.

The sharing sessions revealed another major barrier faced by immigrant communities — that dementia is frequently associated with “fear, stigma, and a belief that little can be done,” says Morrison, making it harder for people to talk about it or seek support. “It’s sometimes deemed to be shameful,” adds Dadich. “In some communities, mental health and cognitive decline are not openly discussed.”

Others wrongly equate dementia with mental illness or as only starting in old age. “When I was diagnosed, everyone said I was too young and that I was lying,” recalls Lee. “My boyfriend at that time even said to me: ‘Go and get your head examined.’”

The team added segments to the workshop that were targeted at teaching carers how to engage with people with dementia and how to create a safe, easy-to-navigate living environment.

CHANGING LIVES
Dementia Friends Unite was launched in 2022 in south-western Sydney — home to a large migrant population, and where more than 12,500 people live with dementia. Each workshop was run by trained bilingual facilitators in English, Arabic, Vietnamese, Mandarin, Cantonese and Greek. More than 220 people attended the workshops, mostly older adults.

The results were really encouraging, says Karamacoska. Participants surveyed after the programme showed significant improvements in their knowledge about dementia, especially about the causes and how to manage it, as well as improvements in attitudes toward the diagnosis and comfort in accessing services.

“We also heard stories of how families were implementing some of the strategies we had shared for making small adjustments to help their loved ones,” she says, adding that a follow-up survey conducted 12 months later revealed similar findings.

Community and aged-care industry stakeholders also benefitted from the programme, “they really appreciated the whole-community approach that it takes to support someone with dementia. And they got to leverage resources amongst themselves,” Karamacoska says.

In further proof of its success, Dementia Friends Unite has since expanded beyond the Canterbury-Bankstown region into other suburbs. “Once people found out what we were doing, they all jumped on board,” she says. “Everyone wanted a piece of the action.”

Her team is now adding more languages into the mix, including Spanish, Hindi, Punjabi and — her grandparents’ native tongue — Macedonian.

If Dementia Friends Unite had existed during her PhD, Karamacoska says it would have saved her family years of figuring things out on their own. “I think we would have helped my grandma especially cope much better, and we would have more quickly tackled the stigma of having dementia.”