Accommodating the needs of culturally and linguistic diverse (CALD) elders must become a standard feature of dementia care services, according to leading aged care researchers.
Professor Bianca Brijnath, divisional director of social gerontology at the National Ageing Research Institute (NARI), says that aged care services have not been adapting properly to the changing needs of older Australians — 37 per cent of whom were born overseas.
“The Government keeps putting this as a niche or a side issue, but it’s really not,” Brijnath says.
Recent data from the Australian Institute of Health and Welfare (AIHW) shows that while Australians from English-speaking backgrounds have, on average, a higher prevalence of chronic illness, there are certain conditions which are disproportionately affecting CALD elders.
Dementia is one of these conditions, which currently affects a higher proportion of CALD elders — particularly those born in Italy, Vietnam, Greece and Iraq — than the Australian-born population.
And Brijnath notes that these disparities are set to widen further in the decades to come.
“If you look at the modelling of who is going to get dementia into the future, we see a 144 per cent rise in the Australian-born population, but we’re seeing over 600 per cent increases in several CALD populations,” she says.
So what can aged care providers and workers do to properly accommodate CALD elders living with dementia?
Brijnath offers a number of practical strategies, all underpinned by developing relationships with CALD elders and their families that feature clear lines of communication, and a willingness to listen and learn from diverse communities.
“No provider will ever get it right straight away or 100 per cent of the time, so the issue is: how do you create respectful and clear dialogue between the provider and the family, and the individual worker and the families, such that you can eventually deliver good quality care,” Brijnath says.
Breaking down cultural stigmas attached to dementia
A diagnosis of dementia can be devastating for any family, but Brijnath says that medical professionals and aged care providers must take extra steps to clarify the significance of such a condition with CALD families.
“The first barrier is actually raising awareness in CALD communities and educate communities about what dementia really is: a disease and degenerative condition, not a part of normal ageing, nor a sign of madness or anything like that.
“Dementia itself is quite an interesting condition because in some languages, there is no word for it.
“In some cultures, their description of dementia is very much conflating it with madness… and very, very pejorative language is used around it — ‘a curse’, ‘witchcraft’ and all those sorts of descriptions are applied.
“So, you can see that it becomes an area that gets really fraught with stigma, and that can make it very difficult for families to meaningfully engage with providers and for providers to engage with families.”
Widespread, timely access to interpreters needed
Access to interpreters that can support CALD elders throughout all interactions with the health and aged care systems has long been advocated for by leading CALD-community advocates, including Council of Elders member, Danijela Hlis.
As Brijnath explains, such services are vital due to the common course of the neurodegenerative process.
“One of the symptoms of dementia is aphasia, or a loss of language, and when we talk about loss of language, often it is: last in, first out.
“So if English is your second, third, fourth language, you will lose that first before you will forget your mother tongue.
“Ultimately, you might have to end up communicating with the person in the language that they were sort of born into and grew up with, or even a specific dialect.”
Lack of interpreter access is currently resulting in CALD elders receiving their dementia diagnosis, and associated care, much later than the average Australian.
“Typically, there’s delayed diagnosis in CALD communities … people struggle to find a way to get the clinician and an interpreter together to facilitate that diagnosis,” Brijnath says.
“Because the older person is losing their language skills in English, a test has to be administered in a language that they can actually reply in and be assessed under — and so you need an interpreter to do that.”
Not only is greater presence of interpreters needed in aged care settings, but training of such staff in dementia-care principles is also in desperate demand.
This is the current focus of an ongoing NARI research project called the MINDSET Study, which aims, not only to assess the value of translations services in isolation, but also to ensure the aged care interpreters receive targeted, dementia-care training.
“Basically what we’ve done is create training for interpreters, on how to administer a culturally fair dementia assessment, which is what’s used in the diagnostic process,” Brijnath says.
“We upskilled and trained them in that, and now we’re testing them to see if it’s made a difference.”
Official findings are not expected until late 2023, but so far feedback has been positive.
“We certainly hope it will [have made a difference], and what the preliminary feedback suggests is that it’s extremely beneficial for interpreters.”
Understanding CALD communities’ familial structures and values
Another key element of culturally safe care is recognising CALD families’ desire to be equal partners in their older parent or relative’s care.
“There’s a lot of resistance in some communities about outsiders coming in and doing care work that traditionally has been done by family members.
“[Aged care workers must] convince the family that they’re there just to care and support them, as well as the person living with dementia; they’re not there to take over the family’s job or replace the family.
“Sometimes you might have to start small, with a few minor tasks, and then you can escalate gradually, but always playing that support role for family members to help them — that goes a very long way to enhancing quality of life.”
Providing this reassurance also goes a long way in creating a fairer work-life balance for women from CALD backgrounds.
“Most of the [caring] work is undertaken by women, sometimes by spouses, but usually by daughters and daughter-in-laws,” Brijnath says.
“There’s a huge amount of pressure put on these women to do this work, which is physically demanding, financially draining and emotionally exhausting.
“And sometimes other family members don’t necessarily fully understand and appreciate how much of a toll it’s taking on this on this person.
“So the role of the aged care provider is really to come in there and support the family, but particularly to support women in doing the this kind of work and to give them that respite, that bit of a break.”
Workers must also be wary that CALD elders may have non-negotiable care requirements associated with cultural etiquette.
“It’s important to be respectful around what’s appropriate and inappropriate to the family,” Brijnath says.
“In some families, you might have gender issues around who can, for example, deliver intimate care, so it may be a man has to shower man or in a lady showers a lady.”
Harnessing CALD workers’ expertise
Making CALD-friendly dementia care a standard feature of care across the country can start, Brijnath notes, by allowing aged care workers to lead the way.
“I think what providers need to be supported to do better is actually recognise the strength in their own workforce, because we don’t harness that strength enough, especially when it comes to cultural safety.
“While we are servicing an increasingly culturally diverse clientele, the aged care workforce is also becoming more culturally diverse, with 40 per cent of the aged care workforce comprising migrant workers or CALD workers, and that’s growing.
“It seems to me that we’ve got this diverse workforce that has got a lot of strength in it in terms of delivering culturally safe care.”
Prevention also a priority
While the rate of dementia will inevitably grow in the decades to come, Brijnath emphasises that Government must invest more in preventative research, with careful attention paid to the risk factors affecting CALD communities.
“I think the Government needs to take dementia risk reduction much more seriously in CALD communities,” Brijnath says.
“They’re currently doing nothing in that space, and they’ve really got to step up and do a lot more, because, ultimately, that will bear a financial benefit down the track.
“That’s going to keep older people more engaged, more productive, and at home for longer, which is what everybody wants.”