Aboriginal & Torres Strait Islander peoples & dementia

This fact sheet provides information for aged carestaff to improve services for Stolen Generations survivors.

A report for Alzheimer's Australia: Paper 41 October 2014 By Professor Leon Flicker and Kristen Holdsworth

Hosted by DSA - a discussion of the current environment of care of First Nations peoples, what quality of life and care means for First Nations peoples and how this can be different from the general Australian population.
41 minutes. Includes written transcript.

Older Aboriginal and Torres Strait Islander people are more likely to develop dementia, and experience barriers to accessing the supports and services they need, compared to other Australians.

The Cultural Assessment for Aboriginal and Torres Strait Islander people is a unique document designed to record important cultural and life information, and build rapport between health professionals and the Aboriginal and Torres Strait Islander person with dementia and their family.

High quality research involving Indigenous people with cognitive impairment and dementia is critical for informing evidence-based policy and practice. An examination of the volume, scope and ethical considerations of research related to dementia with Indigenous populations globally from January 2000–December 2021. Studies were mostly conducted in Australia with Aboriginal and Torres Strait Islander people (n = 30; 39%)
Bryant J, Freund M, Ries N, et al. Volume, scope, and consideration of ethical issues in Indigenous cognitive impairment and dementia research: A systematic scoping review of studies published between 2000-2021. Dementia. 2022;21(8):2647-2676.

This epidemiological analysis based on population level mortality data demonstrates the higher dementia-related mortality rate for Indigenous Australians especially at younger ages.
Waller, Michael, Buckley, Rachel F, Masters, Colin L, Nona, Francis R, Eades, Sandra J & Dobson, Annette J. (2021). Deaths with dementia in indigenous and non-indigenous Australians: A nationwide study. Journal of Alzheimer's Disease, 81(4), 1589-1599.

This study aims to explore, from the perspective of healthcare providers in the ACCHS sector across urban, regional and remote communities, the barriers and enablers to the provision of dementia diagnosis and care.
Bryant, J., Noble, N., Freund, M. et al. (2021) How can dementia diagnosis and care for Aboriginal and Torres Strait Islander people be improved? Perspectives of healthcare providers providing care in Aboriginal community controlled health services. BMC Health Serv Res 21, 699

These findings suggest that the majority of older Australian Aboriginal and Torres Strait Islander people prefer aged and disability care provided by Aboriginal services. Given the anticipated increase in service demand in this population, there is a growing need for culturally safe services, particularly in regional settings.
Larke BM, Broe GA, Daylight G et al (2020) Patterns and Preferences for Accessing Health and Aged Care Services in Older Aboriginal and
Torres Strait Islander Australians. Australasian Journal on Ageing. First published 6 November 2020.

In this article, the authors discuss experience and meaning in caregiving for family of older Aboriginal people with cognitive decline or dementia living in an urban Australian context. Examining the ways dementia caregiving is revealed in Aboriginal peoples’ artistic, tangible, and colloquial expressions of their experience.
Arkles, R., Jankelson, C., Radford, K., & Jackson Pulver, L. (2020). Family caregiving for older Aboriginal people in urban Australia: Disclosing worlds of meaning in the dementia experience. Dementia, 19(2), 397–415.

Dementia prevalence in Aboriginal and Torres Strait Islander Australians is three to five times higher than the general Australian population. A better understanding of the underlying biomedical and social risk factors is needed to guide dementia prevention in Aboriginal Australians. The current study is the first to examine potential risk factors for dementia in the majority urban and regional population, with a representative sample of 336 Aboriginal Australians aged 60 years and older.
Radford, K., Lavrencic, L. M., Delbaere, K., Draper, B., Cumming, R., Daylight, G., Mack, H. A., Chalkley, S., Bennett, H., Garvey, G., Hill, T. Y., Lasschuit, D., & Broe, G. A. (2019). Factors Associated with the High Prevalence of Dementia in Older Aboriginal Australians. Journal of Alzheimer's disease : JAD, 70(s1), S75–S85.

The findings contribute to public health scholarship involving Aboriginal community responses to dementia care. The study has resulted in important initiatives including a community-based dementia education program to ensure Aboriginal people impacted by dementia are provided with effective and culturally appropriate care.
Cox, T., Hoang, H., Goldberg, L. R., & Baldock, D. (2019). Aboriginal community understandings of dementia and responses to dementia care. Public health, 172, 15–21

A major public health issue in Australia is the continuing health inequality between Indigenous (Aboriginal and Torres Strait Islander peoples) and non-Indigenous Australians, and the urgent need to close this gap.1-3 A key component of this health disparity is the notably higher prevalence rates of dementia now documented for younger as well as older Indigenous Australians, and increasingly men as well as women.
Goldberg, L. R., Cox, T., Hoang, H., & Baldock, D. (2018). Addressing dementia with Indigenous peoples: a contributing initiative from the Circular Head Aboriginal community. Australian and New Zealand Journal of Public Health, 42(5), 424–426.

This paper highlights practical ways to apply best practice principles when addressing the detection of cognitive impairment and dementia in older Aboriginal and Torres Strait Islander people and its management in the context of a person’s family, carers and community.
LoGiudice, D., Hughson, J., Douglas, H., Wenitong, M., Belfrage, M. (2023). Culturally safe, trauma-informed approach to cognitive impairment and dementia in older Aboriginal and Torres Strait Islander people. Australian Journal of General Practice, 52(8), 505-511. 10.31128/ajgp-01-23-6672

Dementia in Aboriginal and Torres Strait Islander communities is 3-5 times higher than the general Australian population. Low awareness of dementia and aged care services has been identified as a key factor contributing to poorer outcomes for older Aboriginal and Torres Strait Islander people. This project aims to provide a centralised online source of appropriate resources and information for Aboriginal and Torres Strait Islander communities. Translating the results of current research into culturally relevant and accessible information, education and training for people living with dementia, their families and carers, as well as for Aboriginal and Torres Strait Islander Health Workers.

The Australian Indigenous HealthInfoNet‘s mission is to contribute to improving the health of Australia’s Aboriginal and Torres Strait Islander people and assist in ‘closing the gap’ by facilitating the sharing and exchange of relevant, high-quality knowledge. This site covers many health topics including dementia.

Improving the Health and Wellbeing of Older Aboriginal People Through Community-Based Research Projects. Access to the KICA tools are available here.

It’s important to find aged care services that respect your culture as well as meet your care needs. If you are Aboriginal or Torres Strait Islander, and 50 years or older, there are services that provide specialised care.

Find out more about dementia and how it affects Aboriginal and Torres Strait Islander people from Mark Wenitong, one of Australia's longest standing and respected indigenous doctors.
Includes video content

The Kimberley Indigenous Cognitive Assessment was developed and validated in response to the need for a validated cognitive screening tool for older Aboriginal Australians living in rural and remote areas. It has been further adapted for use with Torres Strait Islander people, and for Aboriginal people living in urban and regional areas.
Link to tools and video support.