Calls for better care for First Nations people with dementia
Dementia rates are five times higher for First Nations people, yet one family's struggle reveals how the healthcare system continues to fail Indigenous elders.
First Nations content warning: this story contains names and images of people who have now passed.
When May Armstrong was a little girl, growing up on an Aboriginal mission and running from place to place with her family to avoid being institutionalised as part of the Stolen Generation, her father wouldn’t let her eat or drink before he tasted it first, in case the food was poisoned.
“I didn’t know any of this until the last years of her life,” May’s granddaughter Mel Armstrong told news.com.au.
It made her transition into an aged care facility, after advanced dementia meant Ms Armstrong could no longer care for her grandmother at home, all the more traumatic.
“In her mind Nan was seven, and she was looking for her dad, and she was afraid to eat or drink because they were poisoning the water,” Ms Armstrong said.
“She’d be sobbing and crying and shaking because she thought they were trying to poison her.”
It’s one of the reasons Ms Armstrong, who is throwing her support behind news.com.au and The Australian's Think Again campaign, is calling for more culturally appropriate care for First Nations people living with dementia, after seeing her grandmother’s treatment in the final stage of her life.
“The decline in her as soon as she went into care was shocking,” she said.
In the years prior, Ms Armstrong had been juggling care for her grandmother with her own family and work commitments. It wasn’t until a carer support service suggested she might be suffering from “carer burnout” that she realised something needed to change.
Defined as a state of physical, emotional and mental exhaustion, carer burnout is common among people caring for a loved one with dementia without support. For Ms Armstrong, it manifested in what she calls “almost complete nervous system collapse.”
“You know, when you’re really tired, and if someone were to drop a coaster on a table it kind of shudders through the table, and you feel the sound?”
“I was literally feeling sounds all of the time. If the phone rang, it was 10 times louder. Or if the door shut, it was almost like my nerves were sitting on the outside of my body, and I could feel everything,” she said.
Australia’s Interim First Nations Aged Care Commissioner Andrea Kelly said studies have consistently found that dementia is three to five times more prevalent with Aboriginal and Torres Strait Islander people than the non-Indigenous population, with a 57 per cent higher rate of mortality.
“Aboriginal and Torres Strait Islander people are also more likely to present with dementia symptoms at a younger age, compared to the non-Indigenous population,” Ms Kelly said.
Despite this discrepancy, Ms Kelly said institutional racism and lack of understanding often prevented First Nations people from accessing appropriate care.
“Thin markets are more likely to occur in remote and very remote locations, which has a greater impact on Aboriginal and Torres Strait Islander people, who make up 18.2 per cent of people in remote areas and 47.2 per cent of people in very remote areas,” she said.
“However, it is important to remember that thin markets are not unique to rural and remote locations, and exist in urban and regional centres, where there is a shortage or lack of choice for older Aboriginal and Torres Strait Islander people to find a provider who can offer culturally safe aged care that meets their needs.”
Ms Kelly said another issue she sees often with First Nations people with dementia is a fear of dying away from Country.
“There is a deeply held fear of dying away from community and Country,” she said.
“When older Aboriginal and Torres Strait Islander people are forced to receive care away from Country, it can have a profound impact on a person’s spiritual, physical and mental wellbeing.
“Many older Aboriginal and Torres Strait Islander people will choose to forgo receiving care at all, rather than receive it away from their Country,” Ms Kelly said.
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After hearing she was fielding up to 27 phone calls per day from her grandmother, the carer support service advised Ms Armstrong to have her assessed in hospital.
And while the hospital admitted her grandmother, they refused to assess her cognitive ability. The reason? She was Aboriginal.
“They said ‘we’re not prepared to take away her freedom because she’s Aboriginal’,” Ms Armstrong said.
“I said, ‘I didn’t ask you to take away her freedom. I asked you to deliver health care’.”
“It took me seven weeks of fighting to get Nan a proper assessment. When they finally did, it came back that she had zero capacity to live independently.”
Indeed, for Ms Armstrong, making sure her grandmother got an opportunity to revisit the place she was born before going into care was something she describes as “incredibly healing.”
“I was able to take her back to Country before she went into care, which made the transition a lot easier,” she said.
Continuing that connection with her grandmother’s culture once she was in care was “a lifeline” as well.
“I’d take her outside and sit down by the water, give her the clap sticks,” Ms Armstrong said.
“It helped her. She’d be hitting the clap sticks, talking about different things from way back, her old people, things like that. It was healing for Nan.”
“I was blessed really, to get to understand her at the end of her life.
“In a lot of ways she transitioned going backwards, so I got to see the veils sort of drop away in front of me, and I could understand who she was before, and how she’d become who she was when I knew her. It humbles you, and if you can be open to that, your compassion can become something really vast.”
Ms Kelly, who in February this year published a report to Government entitled Transforming Aged Care for Aboriginal and Torres Strait Islander People, said evidence from the aged and dementia care sectors demonstrated that local, community-led approaches result in the best outcomes.
“Building the Aboriginal Community-Controlled Organisation (ACCO) sector is a Priority Reform under the National Agreement on Closing The Gap for a reason: it’s currently the best way we know we can deliver strong health and wellbeing outcomes for Aboriginal and Torres Strait Islander people,” she said.
“In my report, I highlighted the National Aboriginal and Torres Strait Islander Flexible Aged Care Program (NATSIFAC) as a strong model for the delivery of care. NATSIFAC, while not perfect, is a flexible funding model that supports community-led, culturally safe care.”
“But the NATSIFAC Program is in dire need of reform, as it is currently highly restrictive and almost impossible for new providers to enter.
“The Royal Commission into Aged Care Quality and Safety also proposed building upon the NATSIFAC model and scaling it up as an incorporated part of the broader aged care system.”
Ms Armstrong, whose grandmother May sadly died at 92 earlier this year, has published a book in her honour in the hopes of educating people about First Nations’ experiences of dementia.
Her advice to other caregivers trying to navigate the system for a loved one with dementia, particularly one with specific cultural needs, is to steal yourself for advocacy without letting it overwhelm you.
“You need to learn to rest, not to quit because it’s a long slog that breaks your heart, but it is worth standing up for our people,” she said.
Originally published as Calls for better care for First Nations people with dementia
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