Understanding dementia among First Nations people
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:
- Population health impacts (incidence, prevalence and deaths)
- Burden of disease
- Hospital care
- Aged care service use
- First Nations-specific health and aged care programs and caring roles.
The pages also discuss what is being done to address the impact of dementia and the availability of services to meet the needs of First Nations people.
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 in 2022, there were over 896,300 First Nations people, making up 3.5% of the total Australian population. According to the ABS (2022), among First Nations people in 2021:
- 91% identified as Aboriginal people, 4.2% as Torres Strait Islander people, and 4.4% as Aboriginal and Torres Strait Islander people.
- 5.9% were aged 65 years and over, compared with 18% of non-Indigenous Australians. However, the First Nations population has been ageing and it is expected to continue to do so in the future (Temple et al. 2020).
- 37% lived in capital city areas, compared with 35% in 2016.
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 that tend to support First Nations people with dementia, to live well. These include policies and services that: incorporate Indigenous 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).
|Caring for family and friends with dementia|
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.
Need more information?
If you require more information about dementia in First Nations people, or if you are an Aboriginal and/or Torres Strait Islander person and want to know where to seek help if dementia is suspected or want to find out about available support services refer to:
- Dementia Australia (for resources for First Nations communities)
- National Dementia Helpline: 1800 100 500 (a free and confidential service to discuss dementia and memory loss concerns for yourself or others)
- Dementia Behaviour Management Advisory Service: 1800 699 799 (if needing help to manage behaviour associated with dementia)
- My Aged Care (for information on supporting First Nations people accessing aged care).
ABS (Australian Bureau of Statistics) (2022) Aboriginal and Torres Strait Islander people: Census, 2021 , ABS, Australian Government, accessed 1 August 2022.
AIHW (2020) Dementia data gaps and opportunities, AIHW, Australian Government, accessed 17 August 2021.
Alzheimer's Australia (2006) Beginning the conversation: addressing dementia in Aboriginal and Torres Strait Islander communities, Alzheimer's Australia, accessed 14 July 2023.
Arkles R, Jackson Pulver L, Robertson H, Draper B, Chalkley S and Broe A (2010) 'Ageing, cognition and dementia in Australian Aboriginal and Torres Strait Islander peoples: a life cycle approach', University of New South Wales.
Flicker L and Holdsworth K (2014) Aboriginal and Torres Strait islander people and dementia: a review of the research, Dementia Australia website, accessed 17 August 2022.
Lindeman MA, Smith K, LoGiudice D and Elliott M (2017) 'Community care for Indigenous older people: an update', Australasian Journal on Ageing, 36(2):124–127, doi:10.1111/ajag.12316.
LoGiudice D, Josif CM, Malay R, Hyde Z, Haswell M, Lindeman MA et al. (2020) 'The well-being of carers of older Aboriginal people living in the Kimberley Region of remote Western Australia: empowerment, depression, and carer burden', Journal of Applied Gerontology, doi:10.1177/0733464819898667.
Smith K, Flicker L, Lautenschlager NT, Almeida OP, Atkinson D, Dwyer A et al. (2008) 'High prevalence of dementia and cognitive impairment in Indigenous Australians', Neurology, 71(19):1470–1473, doi:10.1212/01.wnl.0000320508.11013.4f.
Smith K, Gilchrist L, Taylor K, Clinch C, LoGiudice D, Edgill P et al. (2020) 'Good Spirit, Good Life: a quality of life tool and framework for older Aboriginal peoples', The Gerontologist, doi:10.1093/geront/gnz185.
Temple J, Wilson T, Taylor A, Kelaher M and Eades S (2020) 'Ageing of the Aboriginal and Torres Strait Islander population: numerical, structural, timing and spatial aspects', Australian and New Zealand Journal of Public Health, 44(4):271–278, doi:10.1111/1753-6405.13001.
Warburton J and Chambers B (2007) 'Older Indigenous Australians: their integral role in culture and community'. Australasian Journal on Ageing, 26(1):3–7, doi: 10.1111/j.1741-6612.2007.00213.x
Western Australian Centre for Health and Ageing (2010). Indigenous services study: Lungurra Ngoora community care final report.Western Australian Centre for Health and Ageing, accessed 6 July 2023.