Indigenous-specific health and aged care programs
There is uncertainty regarding how Indigenous Australians use government-subsidised health and aged care services due to issues related to: health and aged care workers preferring not to ask about Indigenous status; under-disclosure of Indigenous status when asked; inadequate data collection; and small Indigenous samples in surveys limiting meaningful extrapolations.
There is however robust evidence that Indigenous Australians prefer Indigenous-specific services. Studies have also shown that Indigenous Australians 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 Indigenous Australians 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 Indigenous Australians 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 Aboriginal 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.
Indigenous-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 Indigenous Australians with dementia. ACCHS can also act as a referral point to other available services like specialist care, and can help Indigenous Australians 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). Aboriginal health services and other primary health-care providers are also integral for managing risk factors for developing dementia, including providing services such as subsidised Indigenous-specific health checks and follow-up care, as well as pharmaceutical subsidies for Indigenous Australians with (or at risk of developing) a chronic disease (Department of Health 2020).
The National Health and Medical Research Council (NHMRC) has recently developed a roadmap for driving strengths-based, high-priority research on dementia among Indigenous Australians (NHMRC 2020). The NHMRC has also funded a number of targeted research projects that collaborate with Aboriginal Community Controlled Health Services and Indigenous communities to improve the prevention, detection and management of cognitive impairment and dementia (NHMRC 2018).
While Indigenous-specific services are important providers of high-quality dementia care for Indigenous Australians, 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 Indigenous Australians, including in services that are not Indigenous-specific (Royal Commission, 2021).
Caring for others with dementia
Family and other community members tend to play a strong caring role in Indigenous communities, and caring roles are often shared across the community. Elders play a key role in many Indigenous 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 Indigenous carers of people with dementia and/or carers of people with Indigenous Australians with dementia are not available. While there is limited information available on Indigenous Australians caring for someone with dementia specifically, previous work has highlighted challenges faced by Indigenous 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 Indigenous Australians than among non-Indigenous Australians. Indigenous 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 Aboriginal 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.