Dementia in Australia

Dementia has a deep impact on Aboriginal and Torres Strait Islander people (respectfully referred to as First Nations people) and communities. The following pages present the impact of dementia among First Nations people in relation to:

It is essential to understand how dementia is understood and managed among First Nations people in order to devise culturally appropriate and effective policies and services. However, there are important data gaps in relation to dementia in First Nations people, which limit the robustness of analyses and the generalisability of findings for First Nations people. These gaps include the lack of First Nations representation in key survey data, and that data on available services and uptake are not necessarily available outside the organisation providing them (AIHW 2020). As such, results presented here should be interpreted carefully.

First Nations people: key demographics

The term ‘First Nations people’ refers to hundreds of different groups of people with distinct cultures, traditions and languages.

The Australian Bureau of Statistics (ABS) estimates that at 30 June 2021, there were 983,700 First Nations people, making up 3.8% of the total Australian population. People aged 65 years and over comprised 5.4% of the First Nations population, compared with 17.2% of the non-Indigenous population. However, the First Nations population has been ageing and it is expected to continue to do so in the future (Temple et al. 2020).

Perceptions of dementia and enablers for living well with dementia

Experiences of dementia and awareness of risk factors for developing dementia vary greatly among First Nations people, as with non-Indigenous Australians (Flicker and Holdsworth 2014). However, as long as dementia doesn’t affect connection to family, community, and culture, many First Nations people perceive the condition as a natural part of life and not necessarily a medical problem that needs to be fixed (Alzheimer's Australia 2006).

The causes of Aboriginal dementia in Gugu Yimithurr culture is part of a natural process. The body, mind and spirit naturally get older including the brain... It may not need to get fixed as long as the individual is safe and the family and the community is safe there may not be any need to do anything at all.

Mr. Eric Deeral

Chairperson, Elders Justice Group, Hopevale Community, Queensland

There are also known enablers which help support First Nations people with dementia to live well. These include policies and services that: incorporate First Nations cultural perspectives of dementia; support family and communities to care for loved ones with dementia on Country; and are controlled by the community and delivered in a culturally safe manner (see Table 12.1 for more details).

Source: Information is summarised from: Alzheimer's Australia 2006; Arkles et al. 2010; Lindeman et al. 2017; LoGiudice et al. 2020; Smith et al. 2007; Smith 2008; Smith et al. 2020; Warburton and Chambers 2007; Western Australian Centre for Health and Ageing 2010.

Barriers to access of health care for First Nations people living with dementia

First Nations people frequently experience significantly poorer health outcomes than non-Indigenous Australians. Inequalities in health care access and use are considered important drivers of this difference (Looper and Gaétan 2009). Barriers to accessing health services for First Nations people, generally, include services not being available in their area (especially for those living in remote areas), services being too far away, lack of transport, cost, waiting times, and the availability of culturally safe and responsive health services (AIHW 2024).

Stolen Generations survivors are more likely to develop dementia because of the trauma they experienced (Radford et.al. 2017). First Nations people living with dementia may experience higher barriers to access, especially when it comes to receiving timely dementia diagnosis. Contributing factors include:

• Denial and stigma associated with dementia
• Limited community awareness and understanding of dementia
• Perception of dementia as a low priority health condition
• Fear of having to leave Country (for example, relocation to a metropolitan or regional centre to receive treatment or residential care)
• Lack of culturally appropriate services
• Complex and competing issues facing individuals and communities (Bryant, 2021).

See First Nations People and the Health System for more information.