Towards Culturally Responsive Dementia Management for First Nations Australians: A Scoping Review Identifying Gaps and Opportunities
Abstract
1. Introduction
2. Materials and Methods
2.1. Search Strategy
2.2. Information Sources
2.3. Study Inclusion and Exclusion Criteria
2.3.1. Inclusion Criteria
2.3.2. Exclusion Criteria
2.4. Data Screening
2.5. Data Extraction
2.6. Study Quality Assessment
2.7. Data Analysis and Synthesis
2.8. Limitations of the Study
3. Results
3.1. Prevalence and Incidence of Dementia Among First Nations People
3.2. Burden of Dementia Among First Nations People
3.2.1. Impact on Individuals, Families and Communities
3.2.2. Economic Cost of Dementia
3.3. Associated Risk Factors of Dementia Among First Nation Australians
3.4. Culturally Responsive Approaches to Dementia Prevention, Intervention, and Care
3.4.1. Promoting Community-Based Initiatives
3.4.2. Designing Culturally Responsive Dementia Care Models
3.4.3. Strengthening Support for Caregivers and Families
3.5. Integrating Culturally Responsive End-of-Life Care
3.6. Promoting Culturally Responsive Policy and Programme Frameworks
3.7. Barriers to Dementia Care Among First Nations People
3.7.1. Cultural and Conceptual Barriers
3.7.2. Limited Access to Resources and Support
3.7.3. Logistical Challenges
3.7.4. Stigma and Denial
3.7.5. Systemic Healthcare Barriers
3.8. Enablers in Enhancing Dementia Care Among First Nations People
3.8.1. Culturally Appropriate Care
3.8.2. Early Detection and Diagnosis
3.8.3. Holistic and Life-Centred Approach
3.8.4. Workforce Development and Cultural Safety
3.8.5. Government Initiatives and Programmes
3.9. Recommended Strategies for Culturally Responsive Dementia Care
4. Discussion
5. Conclusions and Future Direction
Author Contributions
Funding
Data Availability Statement
Conflicts of Interest
References
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| Approach | Aim(s) | Target | Implementation Method | Evidence Based | Cultural Considerations | Outcome(s) | Reference(s) |
|---|---|---|---|---|---|---|---|
| Education | To improve workforce capacity and access to specialist care in rural and remote settings | Primary health professionals in First Nations community settings, within QLD | Monthly videoconferencing sessions (ECHO), involving lectures and case discussions | ECHO is an effective telementoring tool in various health contexts [86] | 23 IHWs were involved in this programme. | Participants reported improved knowledge of dementia and dementia care, and less professional isolation | [12] |
| Diagnosis, Education |
|
|
| The iPARIHS framework (as used in this study) is widely supported in the literature as an effective method for implementing evidence-based practices. [87] | The programme was developed in collaboration with Indigenous communities. | Rates of concerns raised and diagnoses for cognitive impairment/dementia had doubled; rate of use of cognitive assessment tools had doubled; use of laboratory/imaging investigations doubled and tripled, respectively. | [88,89,90] |
| Diagnosis | Improved dementia detection | Older Aboriginal and Torres Strait Islander people are attending primary health care across varied geographical settings. | Implementing responsive models of cognitive care that are culturally appropriate, co-designed with Aboriginal Community Controlled Health Organisations (ACCHOs), and aligned with the Aboriginal and Torres Strait Islander Roadmap for Dementia Research and Translation | 2019 Australian Government Aboriginal and Torres Strait Islander Roadmap for Dementia Research and Translation. | The programme was developed in collaboration with twelve ACCHOs in urban, regional and remote locations across Queensland, New South Wales, Victoria and Western Australia | The findings highlight the need for improved dementia and CIND detection in Aboriginal and Torres Strait Islander patients. Culturally appropriate models of care, co-designed with ACCHOs, are required to address this need. | [91] |
| Education | To establish a set of dementia education resources to enhance rates of early diagnosis, improve overall care and wellbeing of Indigenous persons with dementia | Aboriginal healthcare and aged care workforce, as well as for the patients and their caregivers | Current gaps and educational needs were identified through interviews with community-based researchers and service providers. Infographics and other interactive multimedia resources were created to cover these educational needs | Numerous studies have indicated the need for culturally appropriate resources that can support service access, enhance care, and work towards dementia prevention [92,93] | An Aboriginal project manager led the project; Aboriginal Elders oversaw the overall project | The resources that were established from this project can be accessed here: https://caringforspirit.neura.edu.au/ accessed on 1 March 2025 | [94] |
| Education | To design and implement an online educational resource for culturally respectful care for Aboriginal and Torres Strait Islander persons with dementia | Non-Indigenous healthcare providers | A 13-week online educational unit (delivered through the University of Tasmania), including interactive yarning sessions with the Elders. | The importance of developing resources to better culturally inform and educate non-Indigenous healthcare providers has been emphasised as a key driver in delivering culturally safe care. [95] | This programme was created under the guidance of 12 Aboriginal Elders (across four states), along with the state-based Aboriginal project unit. | Both the Elders and student participants reported overall positive feedback and review of the course; notably, the presence of and discussions with the Elders throughout the course had a positive impact on the students. | [96] |
| Care, Education | To provide dementia education and training for IHWs, promote the use of KICA, and develop referral processes for telehealth for geriatrician referrals. | ATSI patients across South-West QLD and the Badu and Mabuiag islands of the Torres Strait | IHWs (Indigenous Health Workers) were employed to raise dementia awareness, promote routine cognitive assessments, and promote telehealth use | Use of telehealth has been shown to improve social and emotional well-being, clinical outcomes and overall access to healthcare by Aboriginal and Torres Strait Islander patients [97] | Project worked collaboratively with AICCHOS |
| [98] |
| Ongoing Studies/Trials with Unknown Outcomes Related to Dementia in Distinct First Nations Communities | |||||||
| Prevention | To prevent cognitive function decline in Aboriginal persons | Aboriginal persons (aged 45–90) with normal cognition, across three programme sites in WA | Twelve months of physical activity sessions and educational yarning sessions regarding dementia and its risk factors | Physical activity has been demonstrated to be a protective factor in cognitive and overall health and well-being [99] | The programme was co-designed with ACCHOs and Elders through yarning sessions. | The ongoing study protocol was published in 2024. | [100] |
| Care | To improve the care provided for Aboriginal persons with dementia | Aboriginal Australians with dementia and their families in NSW | To make payments towards the families of the patients as their “paid carers”. This programme would be delivered under the oversight of UnitingCare. | Limited evidence on whether it is pragmatic or realistic to employ family members as paid carers. | This method allows patients to stay connected to the community and the Country. | N/A—published in 2012, no follow-up report of outcomes was published | [101] |
| Care | To identify and develop deliverable strategies, programmes and resources for safeguarding against dementia in a Primary Healthcare (PHC) context | 8 PHCs within QLD, NT, WA and NSW; in urban and regional contexts. | This project will be carried out in multiple phases, including:
| The structure of this project follows the Aboriginal Participatory Action Research (APAR), a research methodology tailored for cultural sensitivity and fostering robust partnerships [102] | The project is a collaborative effort with 8 Aboriginal and Torres Strait Islander Primary Health Centres; intervention programmes will be co-developed with the community | N/A—study protocol only. | [103] |
| Education | To evaluate the effectiveness and transferability of online dementia resources, and to identify the key elements that underpin a successful resource for Aboriginal and Torres Strait Islander persons | Aboriginal community members within Northern Tasmania |
| Numerous studies have indicated the need for culturally appropriate resources that can support service access, enhance care, and work towards dementia prevention [92,93] | This project will run collaboratively with Aboriginal and Torres Strait Islander people, guided by the CREATE framework. [104] | N/A—project protocol only | [104] |
| Prevention | To investigate whether protective factors that help maintain cognitive function in older adults in the general population also benefit Indigenous populations in Australia. | Not specified- does not specify which population it wishes to target within the context of Indigenous Australians | Primary health centres to address modifiable dementia risk profiles and develop appropriate interventions | Not specific due to the scope of the study | Not specified | N/A | [105] |
| Strategy | Recommendation | Basis of Recommendation | Reference |
|---|---|---|---|
| Care, Intervention | Healthcare providers must recognise that the notion of personhood and health in Indigenous cultures differs from the Western perspective. In dementia care, an increased focus on maintaining a strong and healthy connection to their Country and community is imperative. Healthcare providers must also acknowledge that Indigenous persons’ agency lies within their community, and this must be reflected in the patient’s decision-making process. | Expert suggestion. | [131] |
| Early diagnosis, Support for Carers, Community engagement | Guideline for primary healthcare settings for early diagnosis and management of Aboriginal and Torres Strait Islander patients with dementia. Case-finding approach: Screening begins at age 50 due to higher prevalence of dementia. Culturally safe assessments: Using tools like the Kimberley Indigenous Cognitive Assessment (KICA). Holistic care: Addressing social, emotional, and physical health factors. Community and family involvement: Engaging trusted carers and cultural supports. Support for carers: Providing education, respite, and financial support. | Based on the Best Practice Guidelines established in the Let’s CHAT Project [88,89]. This guide has been endorsed by the National Aboriginal Community Controlled Health Organisation (NACCHO) and accepted as a clinical resource by the Royal Australian College of General Practitioners. | [129] |
| Improved dementia detection and management | Optimise the detection and management of dementia and cognitive impairment not dementia (CIND) in older Aboriginal and Torres Strait Islander people attending primary health care across varied geographical settings. This can be achieved by implementing responsive models of cognitive care that are culturally appropriate, co-designed with Aboriginal Community Controlled Health Organisations (ACCHOs), and aligned with the Aboriginal and Torres Strait Islander Roadmap for Dementia Research and Translation, ultimately improving patient care through timely identification of dementia, CIND, and associated risk factors. | This recommendation aligns with the Aboriginal and Torres Strait Islander Roadmap for Dementia Research and Translation, emphasising the importance of culturally appropriate and community-driven approaches to improve dementia detection and care. | [91] |
| Care | Enablers for First Nations people living well with dementia centres on cultural sensitivity in the care that is provided. This includes growing the Indigenous Health workforce, increasing the availability of culturally safe, community-controlled health and aged care services, and maintaining patients’ connections to their community and Country. | These recommendations are from the Australian Institute of Health and Welfare. | [34] |
| Care |
| These recommendations were developed through interviews with Aboriginal Community-Controlled Health Service staff members, including Indigenous Health Workers, General Practitioners, nurses, and practice managers. | [80] |
| Prevention, Care |
| Interviews were conducted with Aboriginal informal caregivers of dementia patients, community care workers and service providers in Kimberley, WA. | [82] |
| Care |
| Interviews were conducted with Aboriginal Medical Services staff, community leaders, and community members across three locations in rural and remote Queensland. | [76] |
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Akefe, I.O.; Maehashi, S.; Ameh, M.; Chinaka, C.; Akanbi, A.; Abunyewah, M.; Schweitzer, D. Towards Culturally Responsive Dementia Management for First Nations Australians: A Scoping Review Identifying Gaps and Opportunities. J. Dement. Alzheimer's Dis. 2026, 3, 3. https://doi.org/10.3390/jdad3010003
Akefe IO, Maehashi S, Ameh M, Chinaka C, Akanbi A, Abunyewah M, Schweitzer D. Towards Culturally Responsive Dementia Management for First Nations Australians: A Scoping Review Identifying Gaps and Opportunities. Journal of Dementia and Alzheimer's Disease. 2026; 3(1):3. https://doi.org/10.3390/jdad3010003
Chicago/Turabian StyleAkefe, Isaac Oluwatobi, Saki Maehashi, Matthew Ameh, Chiemeka Chinaka, Afolabi Akanbi, Matthew Abunyewah, and Daniel Schweitzer. 2026. "Towards Culturally Responsive Dementia Management for First Nations Australians: A Scoping Review Identifying Gaps and Opportunities" Journal of Dementia and Alzheimer's Disease 3, no. 1: 3. https://doi.org/10.3390/jdad3010003
APA StyleAkefe, I. O., Maehashi, S., Ameh, M., Chinaka, C., Akanbi, A., Abunyewah, M., & Schweitzer, D. (2026). Towards Culturally Responsive Dementia Management for First Nations Australians: A Scoping Review Identifying Gaps and Opportunities. Journal of Dementia and Alzheimer's Disease, 3(1), 3. https://doi.org/10.3390/jdad3010003

