Faye missed crucial dementia warning signs, here’s what not to ignore

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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.

As someone who had spent their career working in social services, Faye Spiteri thought she had a good grasp on figuring out when things weren’t quite right.

So when her Greece-born father was diagnosed with dementia at 77, Ms Spiteri said she was astounded at how she’d missed the warning signs.

“It was quite a shock to us because he had always been a very healthy man and very strong,” Ms Spiteri said.

“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 Action Week (18-24 September) is an awareness and advocacy campaign led by during September each year.

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.

Dementia Australia said there are estimated to be more than 400,000 Australians living with the condition and without a medical breakthrough, this number is expected to increase to more than 800,000 by 2058.

Australia has an ageing population and according to Australian Bureau of Statistics’ census data, in 2021 almost 30 per cent of the population was born overseas.

As a result, the demand for culturally appropriate aged care services is also rising.

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 lossDifficulty performing familiar tasks such as cooking a mealConfusion about time and placeProblems with language and abstract thinkingPoor or decreased judgementMisplacing thingsSudden changes in personality or behaviourA loss of interest in previously enjoyed activities

When Ms Spiteri’s father began showing warning signs, she said her family justified the changes as a culmination of life’s challenges.

“We thought as you age you’re entitled to be a little bit frustrated and angry,” she said.

“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

As carers become exhausted and burnt out there is a risk of reduced quality of care for those living with dementia, and in extreme cases abuse.

“What happens when people find themselves in those situations is we know from the evidence there’s a greater likelihood of people with dementia being restrained at home,” Prof Brijnath said.

“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.”

A group of older people stand around a garden

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.

Ms Spiteri said finding culturally appropriate care can help break through those barriers, recalling the difficulties she faced caring for her father.

“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

Ms Spiteri now works as the CEO of Fronditha Care, a Melbourne-based aged care provider tailored to the culturally specific needs of the city’s Greek community.

It’s demonstrated a successful model of what culturally appropriate care can look like, growing significantly since it was established in 1977.

Its unique aspects include bilingual staff, menus featuring Greek food, buildings designed to resemble Greek architecture and yearly celebrations to mark important Greek calendar events.

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

Newer communities lag behind

Prof Brijnath said while progress has been made in providing culturally appropriate aged care in Australia, it’s mainly geared towards well-established migrant communities, particularly Greek, Italian and Chinese.

“The availability of culturally specific care for different communities is very limited.

“When you think about other more recent arrivals, like South Asian communities, for example, there is almost nothing available for them in terms of culturally specific aged care. So it’s quite disparate, and it’s not uniform at all.”

Innovation and technology will be crucial in expanding access to culturally competent and culturally safe care to a broad range of communities, according to Prof Brijnath, particularly for those desiring to keep loved ones at home.

“We need to work with communities around how you keep people at home, look after them at home, so they can live and die at home, which is ultimately, at the end of the day, a preference that everybody wants.”

If you or someone you know is impacted by family and domestic violence, call 1800RESPECT on 1800 737 732 or visit . In an emergency, call 000.

Readers seeking support with mental health can contact Beyond Blue on 1300 22 4636. More information is available at .

supports people from culturally and linguistically diverse backgrounds.

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