When Danijela Hlis’ Slovenian-born parents went into respite care in Tasmania while she, their family carer, recovered from surgery, it wasn’t long at all before she received an alarming phone call. “They vanished,” she says.
“Police had to find them, they just couldn’t hack it.
“Nobody could talk to them, they couldn’t talk to anybody, they didn’t know the food,” Hlis recalls.
Eventually Hlis’ mother was found wandering the streets and her father was located at Hlis’ brother’s house, but with limited English and her mother living with dementia, Hlis’ parents were faced with a care system so foreign and alienating they felt escape was their only option.
This was back in the late ’90s, however Hlis, who is now a volunteer bicultural social support worker and Dementia Australia Advocate, says not nearly enough has changed since then.
“We could have many more ethnic-specific aged care facilities … around Australia,” she suggests.
“We don’t really have bicultural or bilingual staff in the respite centres.
“Staff are still not very well trained and we don’t really have a legal obligation to engage interpreters in all hospitals, surgeries and residential care facilities – it’s still all your own initiative.”
Hlis points out that migrants who are living with dementia often revert to their first language or ‘mother tongue’, which creates an extra barrier for them later in life, especially when entering an English-speaking aged care facility or respite centre.
And while many migrants struggle to feel at home in the mainstream aged care system, so do Australia’s First Peoples.
A study by Neuroscience Research Australia (NeuRA) has found that a majority of Aboriginal and Torres Strait Islanders who are 60 years or older prefer to access aged care provided by an Aboriginal community-controlled service, with a lack of cultural safety being a major concern.
Of 336 people surveyed, 59 per cent expressed a preference for care from an Aboriginal community-controlled service, just 10 per cent prefer a mainstream service and 31 per cent indicated they are comfortable receiving either.
NeuRA Aboriginal Health and Ageing Group lead Dr Kylie Radford says many participants’ fears around cultural safety stemmed from past experiences of discrimination or racism from within the mainstream healthcare system.
Others felt more comfortable with staff who were experienced in working with Indigenous people.
“Someone said, ‘they just know what you’re thinking’,” Radford recalls.
“It’s a lot easier to relate to the staff in those kinds of services, just because they have that degree of cultural competence and experience working with Aboriginal and Torres Strait Islander people.”
Radford says the proportion of Indigenous Australians seeking Indigenous-run aged care is growing, as is the ageing Indigenous population, and with anecdotal evidence suggesting some would rather avoid care altogether than enter a mainstream service, the time to act is now.
“Some people might be missing out on important aspects of healthcare … if it is seen that those services aren’t culturally appropriate for an older person,” she says.
Both Radford and Hlis would like to see an aged care system that is more accommodating to cultural diversity.
“There is still this attitude by many people, unfortunately, like ‘Well, you don’t speak English, bad luck. It’s your own fault. Why didn’t you learn?’, when older people can no longer speak up on their own,” Hlis says.
“But it shouldn’t be about ‘Why have I reverted to my mother tongue? Or ‘Why have I forgotten English?’
“It must be only about, ‘How can I best care for you? How can I enable you to live well? How can I respect your human rights, to be heard and to be understood? How can I best engage with you so that you will be respected, accepted, cared for?
“Because we are different in race, but we are equal in human rights and we keep forgetting that.”
Hlis’ took it upon herself to upskill staff when her mother eventually moved into a residential aged care facility.
“Slowly I was able to introduce them to all the bicultural tools that I was involved in producing with the local migrants association and Partners in Culturally Appropriate Care (PICAC), bilinguals posters, I purchased talking [photo] albums from an online Melbourne shop,” she says.
“And then I started running free workshops for the staff in mum’s nursing home and that is probably what changed their attitude, because the workshops for staff were to emphasise that the improved knowledge of the needs of people from diverse backgrounds always leads to better quality care on one hand, and this in turn results in higher job satisfaction for the staff and less turnover of staff, less stress-related sick leave and so on.”
Without the help of passionate and experienced bi-cultural volunteers however, Hlis sees a system ill-equipped to provide quality care for those from diverse backgrounds.
This is especially true, she says, given the fact that many migrants come to Australia having experienced trauma, often war-related, in their home country.
She recalls an incident where her mother became incredibly distraught and uncooperative when a nurse tried to take a blood sample from her without Hlis present.
‘I’m trying to take blood from her for a lab test and she’s screaming her head off,’ Hlis was told over the phone.
“And I said, ‘Oh my God, why are you doing that without me present or without an interpreter present? She probably thinks you’re trying to kill her like the Germans did during the war’,” she recalls.
While there are training programs for care staff in the area of trauma, they are not included in formal training or qualifications as Hlis believes they should be.
“Accreditation must have its purpose, certain training and qualifications must be compulsory with exams,” she says.
“And really, when you look at the workforce today, our workforce in aged care, dementia and disability, is overworked, underpaid, not respected, not admired, and there are very little career paths.
“Now we keep on adding things on top of what they already struggle to do and it can’t work.”
Hlis wants to see more ethnic-specific organisations involved in decision making and planning for the aged care sector.
“If we want to see big changes, Federation of Ethnic Communities Council of Australia (FECCA) should be involved with the government and policymakers on all matters relating to our aging, because FECCA with all its member organisations, have been working with diverse communities for decades and they know their needs,” she says.
With the $6 million in federal funding allocated to address diversity in aged care following the royal commission, Hlis believes some money should be put towards the creation of an online library where ethnic-specific tools, apps and evidence-based research can be accessed by anyone in the sector.
“And then with the rest of the money, we train the staff how to use all these, especially when it comes to pain recognition and management,” Hlis says.
“This is very dear for me, because the staff are very, very caring but if they’re not using whatever tools they have, they can make big mistakes.
“And that’s exactly what I’ve shared with the royal commission about my mum.
“My mum’s tears of distress one night, were mistaken for her sadness and loneliness.
“And unfortunately, by the time I was called and I arrived, she passed away.
“So had they used all the tools that they had, they could have probably determined that she may be having a heart attack, and they would have called the ambulance at the right time.
“That’s why I say ‘Don’t play with people’s lives, use the interpreters, use the translated materials’,” Hlis urges.
Radford would also like to see more consultation and better partnerships formed, between care facilities and their local Aboriginal or Torres Strait Islander communities.
“There’s a lot of diversity across the country, not all communities are the same, not all settings are the same,” she says.
“I think to really understand how your aged care service fits in and how it can meet the needs of the local community, you really do need to form those relationships and partnerships with local community-controlled organisations and community elders, and really learn more about what the local community needs are, so that you can be responsive to that.”
Radford hopes to see action soon which will improve the prospect of aged care for Indigenous Australians.
“This really is a growing issue, and I think that only now are we starting to think more about aged care needs for older Aboriginal and Torres Strait Islander people.
“Our research and others have shown age-related conditions like dementia are much more prevalent among older Aboriginal and Torres Strait Islander people, and with the population increasing at the rate that it is, I think this needs to be more of a priority of aged care.
“The time to start working towards that really is now, because the demand is only going to increase dramatically in the coming years.”