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Key Points:
- There are estimated to be more than 400,000 Australians living with dementia.
- Culturally appropriate aged care will be essential to meet the needs of a multicultural population.
- Some families are hesitant to get help due to stigmas and cultural values around ageing.
“He endured a lot as a migrant, [and] it’s a very common migrant story; war, poverty, migration, rebuilding a home and community … he really loved his life.”
Faye Spiteri with her father on her wedding day. Source: Supplied / Faye Spiteri
Ms Spiteri’s experience reflects that of other families in Australia where experts warn stigmas around dementia are resulting in late diagnosis and a lack of appropriate care.
Rates of dementia rise
Dementia describes a collection of symptoms caused by disorders that affect thinking, memory and behaviour. No two people will experience dementia in the same way.
But Professor Bianca Brijnath, who specialises in cultural diversity, dementia, and mental health at the National Ageing Research Institute, said stigmas and a lack of understanding about dementia are causing significant stress for families.
Because there’s such a limited understanding of dementia, people will often dismiss symptoms as a normal part of ageing.
Professor Bianca Brijnath
According to Dementia Australia, warning signs to look out for include:
- Memory loss
- Difficulty performing familiar tasks such as cooking a meal
- Confusion about time and place
- Problems with language and abstract thinking
- Poor or decreased judgement
- Misplacing things
- Sudden changes in personality or behaviour
- A loss of interest in previously enjoyed activities
“But the memory loss and confusion became more obvious and his personality changed … If I reflect on that now, all those things indicated that he had this condition, so had we known at the time I would have gotten him assessed earlier by a geriatrician.”
Women carry the burden
It is estimated more than 1.5 million people in Australia are involved in the care of someone living with dementia, and Prof Brijnath says the job still falls mostly on women.
It takes a toll on their physical and mental health… this woman is just working and working nonstop.
Prof Bianca Brijnath
“That restraint might be physical, they might be locked in a room, they might be only allowed to go around in certain places of the property. Or they are chemically restrained, they get over-medicated a lot.”
Elderly members of the Greek community gather at a garden run by Fronditha Care, an aged care provider tailored to culturally specific needs. Source: Supplied / Fronditha Care
For culturally and linguistically diverse families, where values around elders can be nuanced and complex, accepting outside help or even considering residential care can be viewed as a failure to fulfil one’s obligations, according to Prof Brijnath.
“I think you run the gamut from feeling that empathy and sympathy for your loved one to complete frustration because you just don’t know what to do,” she said.
You come to appreciate your loved one in a completely different way.
Faye Spiteri
Culturally appropriate care
The aged care provider also organises group outings and recently launched a community garden project to encourage people living with dementia to socialise outside of their homes.
Gardening can bring a range of benefits for people living with dementia. Source: Supplied / Fronditha Care
Ms Spiteri and Prof Brijnath agree that having resources available in language for culturally and linguistically diverse communities is a start, but culturally appropriate care needs to encompass all aspects of life including food, socialising and the rest of the family.
“There are so many things that intersect to ensure that someone feels culturally safe and that the service is fit for purpose in that context,” Ms Spiteri said.
You need to care for the carers too because that diagnosis means you lose them twice, once you get the diagnosis and when they pass, it can be really overwhelming.
Faye Spiteri
