Dementia in Australia

First Nations-specific health and aged care programs

There is uncertainty regarding how First Nations people use government-subsidised health and aged care services due to issues related to: health and aged care workers preferring not to ask about First Nation status; under-disclosure of First Nation status when asked; inadequate data collection; and small First Nations samples in surveys limiting meaningful extrapolations.

There is however robust evidence that First Nations people prefer First Nations-specific services. Studies have also shown that First Nations people prefer services that allow people with dementia to remain in their homes and communities, and which are locally designed in partnership with communities (Lindeman et al. 2017). Other factors enabling First Nations people to access dementia services and support include: availability of affordable dementia support services on Country; accessible transport options to reach service providers; and reasonable waiting times for health and aged care services (Alzheimer’s Australia 2007; Flicker and Holdsworth 2014).

Good Spirit, Good Life, a quality of life framework assessment and package of resources, has recently been developed and validated with Aboriginal elders and could be used to inform national aged care assessment tools. This validated package enables the cultural wellbeing priorities and unmet needs of older First Nations people with and without dementia to be identified, to inform culturally safe care plans, and for elder-informed strategies to be implemented and evaluated (Smith et al. 2020). It also outlines a culturally based and designed framework for supporting the healing and strengthening of the spirit of older First Nations people and thus health and wellbeing outcomes. The Good Spirit, Good Life package is available to be downloaded from Improving the Health and Wellbeing of older Aboriginal and Torres Strait Islander people.

First Nations-specific health and aged care services are essential for providing appropriate care that takes into account the challenges faced by people with dementia, as well as by their carers and communities. Aboriginal Community Controlled Health Services (ACCHS) deliver holistic and culturally appropriate health services to communities, and are often a first point of contact for First Nations people with dementia. ACCHS can also act as a referral point to other available services like specialist care, and can help First Nations people navigate the aged care system. In its final report, the Royal Commission recommended prioritising assistance to Aboriginal and Torres Strait Islander organisations to expand into aged care service delivery, including in partnerships with existing Aboriginal Community Controlled Organisations (Royal Commission 2021). First Nations people health services and other primary health-care providers are also integral for managing risk factors for developing dementia, including providing services such as subsidised First Nations-specific health checks and follow-up care, as well as pharmaceutical subsidies for First Nations people with (or at risk of developing) a chronic disease (Department of Health and Aged Care 2022).

The National Health and Medical Research Council (NHMRC) has recently developed a roadmap for driving strengths-based, high-priority research on dementia among First Nations people (NHMRC 2020). The NHMRC has also funded a number of targeted research projects that collaborate with Aboriginal Community Controlled Health Services and First Nations communities to improve the prevention, detection and management of cognitive impairment and dementia (NHMRC 2018).  

While First Nations-specific services are important providers of high-quality dementia care for First Nations people, it is important that all government-subsidised health and aged care services provide a culturally safe and accessible environment. In its final report, the Royal Commission made several recommendations to move towards an aged care system that provides culturally safe and flexible care for First Nations people, including in services that are not First Nations-specific (Royal Commission 2021).

Caring for others with dementia

Family and other community members tend to play a strong caring role in First Nations communities, and caring roles are often shared across the community. Elders play a key role in many First Nations communities and there tends to be a strong preference for people with dementia to age and die on Country.

The ABS Survey of Disability, Ageing and Carers is the only national data source providing information on unpaid carers in Australia. However, due to sampling issues, data on First Nations carers of people with dementia and/or carers of people with First Nations people with dementia are not available. While there is limited information available on First Nations people caring for someone with dementia specifically, previous work has highlighted challenges faced by First Nations carers more broadly (Hill et al. 2012). These include:

• limited options for culturally safe respite care, which places more burden on carers. In some remote areas, there may be no available respite services
• greater financial costs incurred by carers in regional and remote areas, where carer payments and allowances are insufficient to cover the higher costs of transport, medications, and special equipment required to assist with care
• difficulties with navigating government systems and processes to claim carer-related payments
• high costs of respite and community services in regional and remote areas, when these are available
• higher rates of informal caregiving among First Nations people than among non-Indigenous Australians. First Nations carers are more likely to be younger and female, and to face challenges related to their own health and financial resources.

A recent study by LoGiudice et al. (2020) showed that carers of older First Nations people living in remote Western Australia tended to be young and female (mostly children and grandchildren), and that carers who attended high school and felt empowered, had a lower sense of carer burden.