The health and wellbeing priorities of older Aboriginal and Torres Strait Islanders are often lost in interpretation through culturally biased clinical assessment tools. A team of researchers based at James Cook University and Cairns Hospital is exploring new – and old – ways to ask the right questions.
Launched in 2015, the ever-expanding Healthy Aging Research Team (HART) includes geriatricians, a dietician, physiotherapist, clinical neuropsychologist, occupational therapist, exercise physiologist, Aboriginal and Torres Strait Islander researchers, and PhD and post-doctoral researchers. All share a commitment to improving health systems and healthcare delivery for older residents who wish to stay at home and in their communities.
HART’s first major project, in 2015, mapped the prevalence of dementia in the region. Comprehensive geriatric assessments of 324 residents aged over 40, found similar results to an earlier study in the Kimberley region in Western Australia which found the incidence of dementia was three to five times higher in Aboriginal communities than wider populations.
Community consultation is central to HART’s work. Communication and co-design are key drivers in all their projects. The dementia prevalence study results raised more questions than answers with Torres Strait communities.
“Communities wanted to switch things around and adopt a positive, strengths-based approach to ageing based on a broader holistic view, rather than just a medical model. This informed our most recent project, which aims to develop a framework for healthy aging in the region,” said physiotherapist and JCU Senior Research Fellow, Mrs Rachel Quigley, who jointly coordinates and manages the project with JCU Associate Professor Sarah Russell, a neuropsychologist.
The team is currently half-way through this five-year project, which has sparked other research initiatives to develop the necessary resources – including culturally appropriate screening and assessment tools – to ensure local health services are well-equipped to implement new guidelines on best practice care.
These include an app – available in both English and Creole – to assess the dietary behaviours of people living in Torres Strait Islander communities, with a specific focus on access to traditional foods. The research tool will later be provided to local health centres to screen the eating habits of patients. A similar app is being developed to monitor physical activity.
The framework for healthy ageing is being shaped through yarning sessions with five communities across the Torres Strait and Northern Peninsula Area. A return to sustainable, traditional ways of living, including hunting and fishing for food, is a common theme in the yarning circles held to date.
HART is collaborating with researchers at the University of Western Australia to adapt a quality-of-life tool, Good Spirit Good Life – for the Torres Strait.
“Standard quality of life tools don't really tap into what Aboriginal people see as their perceived quality of life,” said A/Professor Russell. “The idea of quality of life might be completely different for mainstream people living in Melbourne to say, an Aboriginal elder living in the Kimberley. And older people in the Torres Strait might have different views again.
“We often think that quality of life revolves around health, but some people may say that is not a priority; what is more important is their connection with their family, their community, their Country. So, these are going to be very interesting conversations with Torres Strait communities.
“It’s really important that we get it right.”
The team is also working on culturally appropriate assessment and screening tools for depression and anxiety, spurred by the knowledge that the mental health tools they used for the dementia study were not fit for purpose.
“I think the tools weren't appropriately identifying how symptoms of depression are expressed,” said A/Professor Russell. “And some of the words on the tools that we were previously using were not clear. For example, when we asked participants whether they were worriers, they thought we were asking if they were warriors. It confused them.”
The team plans to yarn with communities around how depression and anxiety are experienced, from a Torres Strait Islander perspective, and then develop or adapt existing tools based on the results of those yarning circles, in collaboration with Torres Strait communities and input from a team of experts in depression, and anxiety.
Next year, HART intends to revisit all 324 participants in the dementia prevalence study to obtain longitudinal data on dementia prevalence and associated risk factors. The team is also looking at a framework to assess and support dementia carers. A short questionnaire for carers included in the original dementia study also proved unfit for purpose.
“In the Torres Strait, caring arrangements for a person with dementia are very much family-orientated, rather than one person specifically. So again, we weren’t asking the right questions for us to understand the experience that carers had,” observed Mrs Quigley.
“There's a lot of positives that come out of caring, but it is a massive task and there is a lack of support in the Torres Strait. A framework will help social workers and other health workers have those discussions with carers about their experience of caring for a person with dementia.”
The Healthy Ageing Research Team is also going back to the start, in terms of chronic disease prevention.
“Even though we're talking about old age, a lot of these problems, including dementia, start in early life, with other factors emerging in midlife,” said A/Professor Russell. “So, we're also going to be doing some work around chronic disease prevention with people aged 18 and older, to benefit all residents across the entire Torres Strait.”