Rates of dementia in remote and rural Aboriginal and Torres Strait Islander communities are among the highest recorded globally - and by 2051, the number of First Nations peoples over 50 living with dementia is projected to be 4.5 to 5.5 times higher than today.

The trend illustrates the urgent need for change. Research shows these rates are linked to long-term social and health inequities, including displacement from Country, intergenerational trauma, and higher rates of chronic illness such as diabetes and heart disease. Access to culturally safe services also remains limited, leading to delays in diagnosis and care that often fail to reflect community values.

Awareness is vital

Dr Isabelle Meyer, Executive Director of Dementia Training Australia, told National Indigenous Times that improving knowledge and awareness of dementia is a key factor in improving diagnosis and care in Aboriginal and Torres Strait Islander communities.

"As you know, there are lots of different language groups... all around Australia. More than two thirds of them don't actually have a word or a concept of dementia," she said.

"Yet we know that the rates of dementia across Australia in Indigenous communities is about five times higher than it is in the non-Indigenous population. Just helping mobs understand what dementia is is really important, and that's probably one of the biggest gaps."

Appropriate care hard to come by in remote and regional Australia

Dr Meyer said another key gap understanding around how dementia links to other diseases such as diabetes, and there is also the significant challenge of access to care.

"Once we've got that awareness, how then do we assist people in getting a diagnosis? Because having a diagnosis is what's going to enable them to get the right care and the right help. One of the huge problems that we have in Australia is that for a lot of people in regional and remote areas, they can't access a diagnosis via their local GP or medical centre, and they get sent off Country, sometimes thousands of kilometres away, to access a diagnosis" she said.

"That's a terrifying prospect, and a lot of people actively choose not to bother because they're frightened that if they go off Country to get a diagnosis, they won't ever get back.

"So, the first problem is knowing what dementia is as a condition. The second problem is, how do we facilitate within the system for people to access the diagnosis so that they can access proper care?"

Dr Meyer said there have been improvements in the field of care on Country.

"Organisations like DTA (Dementia Training Australia) will go and do training for families, for care workers, for health workers, anywhere in Australia - literally anywhere. I've been to some very remote communities in the last year or so, as we try and spread the word and increase education about dementia," she said.

Dr Meyer said another challenge was ensuring appropriate care once people return to Country.

"That's not just about accessing existing medical services, but how we build an Indigenous health workforce that will be able to support people on Country," she said.

"For us at Dementia Training Australia there's a second part of our work, which is, how do we educate care workers, whether they're nurses or community workers, home care workers, anyone who needs to know the best way to care for someone who's living with dementia.

"We are fully funded by the Commonwealth to do the training, which is great. DTA specialises in culturally appropriate care. We have a cultural framework that we use to test ourselves and our own learning materials. Our staff are all trained. We work with local communities when we're coming into a community, to make sure that we engage appropriately with Elders in the community, family groups, so our knowledge can become the community's knowledge, and they can do their own thing."

Rules around financial support are a challenge for care at home

Dr Meyer said there needs to be a change in the rules around to accessing financial support for care at home.

"In the new legislation, for someone to access financial support for a home care package - which would be the thing that would enable them to stay at home and still access the support services they need - they've got to have a diagnosis that's made by a neurologist or a gerontologist. Now, I've done an awful lot of travel in remote Australia and I don't know that I could find a gerontologist outside of a capital city," she said.

"How do we make sure we're providing the right care on Country if people can't access care on Country? That one decision the Commonwealth has made that you can't have a diagnosis from a GP or even a nurse practitioner; that you've got to travel to get a gerontologist to tell you you've got dementia basically means that for almost any Indigenous person living outside of a big city, they're not going to be able to stay at home to access care."

She noted family members often need to travel to provide support to someone living with dementia, which can be difficult.

"It becomes a really major issue, even if you've got some parts of the system that work... You're creating circumstances in which this is going to be a traumatic and horrible experience for someone, and an expensive one," Dr Meyer said.

Trauma and isolation - two major dementia risk factors

She noted that Stolen Generations survivors are particularly vulnerable to dementia and the needs associated with it.

"We know that trauma, and particularly the kind of trauma associated with being part of the Stolen Generation, is in fact, a major risk factor for developing dementia," she said.

Dr Meyer warned that elder abuse can means isolation for people with dementia, exacerbating the risks they face.

"The other thing that's important to note... when you talk about institutionalisation is there are often circumstances around frailty and other health issues, which means somebody does have to go into residential aged care," she said.

"And at the moment, there is a really significant proportion of older Aboriginal people in residential aged care who are there under a guardianship order because there's been financial abuse at home in their community. What does it mean for these people that if they're put into residential aged care under a court order, they don't have access to their families? Their families aren't allowed to visit them. They're there, and they're even more isolated and second biggest risk factor after trauma for someone living with dementia, in terms of accelerating the progression of their symptoms, isolation. It is the worst possible scenario, and we're not managing that properly at a system level."

Language barriers highlight importance of care on Country

Dr Meyer noted that language barriers continue to be an issue, which reinforces the value of ensuring, as far as possible, that appropriate care can be delivered on Country.

"I've visited a lot of facilities where predominantly the residents are Indigenous. Almost none of the workforce is Indigenous... In one I could name in South Australia, there are people from 23 different family groups, nine language groups. How are you going to form a community in that facility when none of the people in the facility know how to have a conversation with each other?" she asked.

"That happens a lot in regional and rural Australia, unless you're lucky enough to live in a community where your land Council has established an aged care facility in your area... but we don't have enough culturally appropriate, culturally accessible residential care to support Aboriginal people when they need it.

"And outside of the Kimberley and about six locations in the Northern Territory, there simply aren't any facilities that are geared towards looking after Indigenous people."