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Review

Towards Culturally Responsive Dementia Management for First Nations Australians: A Scoping Review Identifying Gaps and Opportunities

1
CDU Menzies School of Medicine, Charles Darwin University, Ellengowan Drive, Darwin, NT 0909, Australia
2
Medical School, Faculty of Medicine, University of Queensland, Brisbane, QLD 4072, Australia
3
Queensland Brain Institute, The University of Queensland, St. Lucia, Brisbane, QLD 4072, Australia
4
Gallipoli Medical Research, Faculty of Medicine, The University of Queensland, Greenslopes, Brisbane, QLD 4072, Australia
5
Discipline of Psychology, Faculty of Health, Charles Darwin University, Darwin, NT 0909, Australia
6
Centre for Neurosciences, Mater Hospital, Brisbane, QLD 4101, Australia
*
Authors to whom correspondence should be addressed.
J. Dement. Alzheimer's Dis. 2026, 3(1), 3; https://doi.org/10.3390/jdad3010003
Submission received: 29 September 2025 / Revised: 29 October 2025 / Accepted: 17 December 2025 / Published: 8 January 2026

Abstract

Background: Dementia poses a significant health concern among Australia’s First Nations peoples, who experience higher prevalence and earlier onset compared to non-First Nations populations. Despite growing research attention, the overall scope and characteristics of existing literature on dementia in these communities remain unclear. Objective: This scoping review aimed to map and synthesise existing evidence on the burden of dementia among First Nations peoples, focusing on associated risk factors and culturally responsive approaches to prevention, intervention, and care. Methods: Following the PRISMA Extension for Scoping Reviews guidelines, a comprehensive search was conducted across Scopus, EMBASE, PubMed, PsycINFO, CINAHL, the Indigenous Studies Portal, and Google Scholar for English-language studies published between 2004 and 2025. Search terms combined dementia and cognitive impairment with First Nations, Indigenous peoples, and related concepts, alongside terms for risk factors, intervention, prevention, care strategies, and health disparities. Two reviewers independently screened studies and extracted data using a standardised template. Of the 620 records identified, 324 were screened, 130 were assessed in full, and 75 met the inclusion criteria. Data were narratively synthesised to identify key themes and evidence gaps. Results: The review revealed a disproportionate burden of dementia among First Nations peoples, characterised by earlier onset and higher prevalence than in non-First Nations populations. Major modifiable risk factors included social determinants of health, lifestyle behaviours, and inequitable access to healthcare. Studies emphasised the importance of culturally safe, community-led, and multidisciplinary approaches; however, many interventions remain poorly adapted to the diverse cultural contexts of First Nations communities. The review also identified gaps in diagnostic tools, culturally appropriate care pathways, and the integration of traditional knowledge and digital innovations in dementia management. Conclusions: Addressing dementia inequities among First Nations Australians demands transformative, community-driven action that extends beyond descriptive research. Future work should prioritise co-designed, culturally grounded interventions that embed First Nations knowledge systems, strengthen healthcare capacity, and foster long-term community empowerment. Embedding cultural safety within policy and clinical frameworks, and shifting toward preventive, strengths-based approaches, will advance equity in dementia care and provide valuable insights for First Nations health systems globally.

Graphical Abstract

1. Introduction

Dementia represents a significant public health challenge among First Nations peoples, who experience disproportionately higher prevalence and earlier onset compared to non-First Nations populations [1,2]. In Australia, First Nations adults aged 45 years and older are reported to have dementia rates up to five times higher than national averages [3,4]. Similar patterns have been observed among First Nations populations in Canada and other regions, where younger onset and faster progression have been noted [5,6].
This disparity arises from a complex interplay of biological, social, cultural, and environmental determinants. Chronic diseases such as diabetes, cardiovascular conditions, and hypertension, alongside social inequities, limited healthcare access, and lower educational attainment, significantly contribute to this elevated risk [1,7]. Moreover, cultural understandings of dementia may differ markedly from Western biomedical perspectives. In some First Nations communities, dementia may be viewed as a natural part of ageing or associated with stigma [8], potentially affecting health-seeking behaviours [9,10]. Historical factors such as colonisation, loss of traditional practices, and intergenerational trauma have further compounded these challenges [7].
Underdiagnosis remains a significant issue. Standard cognitive assessment tools often fail to capture culturally specific knowledge and communication styles, leading to diagnostic inaccuracies and delayed treatment. The development of culturally sensitive instruments, such as the Canadian Indigenous Cognitive Assessment, marks progress, but further validation in Australian First Nations contexts is needed [6,11]. Enhancing dementia literacy among healthcare providers and communities has been identified as a key step toward improving early detection and culturally safe care [12,13].
Community-led and culturally tailored programmes are increasingly recognised as essential for improving dementia outcomes [8,14]. Initiatives that combine traditional healing with Western medicine, deliver dementia education in local languages, and engage Elders and families in care planning have demonstrated promise [15,16,17]. However, the existing literature on dementia in First Nations populations remains fragmented, with unclear scope and limited synthesis of evidence across settings.
Given the high burden of dementia and the growing but dispersed body of research, this scoping review seeks to systematically map the current evidence on dementia management among First Nations peoples. Specifically, it examines the prevalence, risk factors, and determinants of dementia in First Nations communities. In addition, it identifies existing models of diagnosis, management, and culturally responsive care and highlights gaps in current knowledge to inform future research and policy development.
This review is informed by the Social Determinants of Health (SDH) framework, complemented by Indigenous health equity and postcolonial theoretical perspectives. Together, these frameworks acknowledge that dementia risk, onset, and care outcomes among First Nations peoples are shaped by the complex interplay of cultural, historical, and structural determinants rather than biomedical factors alone [18]. Colonisation, intergenerational trauma, and systemic inequities continue to influence health behaviours, access to care, and community capacity for dementia prevention and management. Applying this integrated framework provides a critical lens to interpret existing evidence, highlighting how social and structural contexts shape health disparities. It also aligns with the review’s objective to identify culturally grounded, community-led, and equity-oriented approaches to dementia prevention and care among First Nations Australians.

2. Materials and Methods

2.1. Search Strategy

Following the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) guidelines, a comprehensive search across multiple databases, including Scopus, EMBASE, PubMed, and Google Scholar, was undertaken to identify primary research investigating dementia and cognitive impairment among First Nations people, with a focus on risk factors, prevention, intervention, care strategies, and healthcare services. Articles were identified using a series of MeSH and non-MeSH terms related to dementia, cognitive impairment, and First Nations populations. The specific terms used to search these databases included (“dementia” OR “cognitive impairment”) AND (“First Nations” OR “Indigenous peoples” OR “Aboriginal peoples” OR “Native peoples”) AND (“risk factors” OR “prevention” OR “intervention” OR “care strategies” OR “healthcare services” OR “health disparities” OR “cultural competency” OR “traditional healing”) (Figure 1). All references from the included papers were manually reviewed. Additional relevant documents were sourced from grey literature.

2.2. Information Sources

For this review, an extensive literature search was undertaken using multiple databases, including PubMed, Scopus, PsycINFO, CINAHL, and the Indigenous Studies Portal, to identify relevant peer-reviewed articles published in English. Google Scholar was also searched. The search was conducted in March 2025 to capture the most recent studies. Additionally, experts and authors were contacted to identify further evidence, including grey literature and unpublished studies, thereby supplementing the database search.

2.3. Study Inclusion and Exclusion Criteria

2.3.1. Inclusion Criteria

Studies were included in this review if they met specific eligibility criteria. Firstly, the studies had to focus specifically on First Nations people in Australia. Additionally, the studies were required to examine the burden of dementia, risk factors, interventions, prevention strategies, care approaches, or healthcare services. The studies also had to be published in English and fall within the publication date range of 2004 to 2025. Both quantitative and qualitative studies were included in the review to capture a comprehensive understanding of the topic. By including a range of study designs, the review aimed to synthesise a broad range of evidence related to dementia in First Nations people. The rationale for restricting the search to English-language articles was due to the limited resources for translation. The focus on recent publications (2004–2025) ensured that the findings were relevant and reflective of current issues and practices.

2.3.2. Exclusion Criteria

Studies were excluded if they did not specifically focus on First Nations people or were not original research or systematic reviews. Editorials and commentaries were also excluded. These criteria ensured the review synthesised relevant, high-quality evidence on dementia among First Nations populations.

2.4. Data Screening

Following the database search, two reviewers independently screened 620 titles and abstracts against predefined inclusion and exclusion criteria. Full texts of potentially eligible studies were assessed, and data extraction was cross-checked for consistency. Discrepancies were resolved through discussion, with a third reviewer consulted when disagreements persisted. Ultimately, 75 studies met the eligibility criteria (Figure 2).

2.5. Data Extraction

The eligible papers were divided among the reviewers for data extraction using a standardised table in Microsoft Excel. The data extraction form captured information on study characteristics, methods, and findings, including study population demographics, cultural considerations, intervention strategies, and outcomes related to dementia prevention, intervention, and care for First Nations Australians.

2.6. Study Quality Assessment

During the screening process, each study’s methodological quality and relevance were carefully considered. While a formal appraisal tool was not employed, reviewers evaluated the methodological rigour of the research and its contribution to understanding dementia care for First Nations Australians. Studies were not excluded based on sample size or design, allowing the review to encompass a wide range of perspectives and experiences. This inclusive approach facilitated the identification of patterns and emerging themes that might have been overlooked with more restrictive criteria. The reviewers noted that some studies had small sample sizes, reflecting common recruitment and retention challenges in First Nations research. Despite these limitations, the review sought to synthesise available evidence and provide insights into culturally responsive approaches to dementia care.

2.7. Data Analysis and Synthesis

The extracted data were charted and synthesised using a narrative approach, focusing on identifying common themes and patterns across the studies. This analysis aimed to provide a comprehensive understanding of the burden of dementia among First Nations people, including underlying risk factors, effective interventions, and care strategies. The synthesis of results identified practical approaches, gaps in research, and areas for future investigation, ultimately contributing to a deeper understanding of culturally responsive dementia care for First Nations Australians (Figure 2).

2.8. Limitations of the Study

The study’s findings should be interpreted in consideration of their potential limitations. Firstly, the restriction to English-language articles may have excluded relevant studies published in other languages, potentially limiting the comprehensiveness of the review. Although the search strategy was comprehensive, some relevant studies may have been missed due to limitations in database coverage or the use of specific search terms. Additionally, the reliance on published literature may have excluded relevant reports or documents, particularly in the grey literature.
The quality of the included studies varied, and the findings depend on the methodological rigour, sample size, and study design of these studies. Furthermore, the heterogeneity of First Nations populations means that the study’s findings may not be generalizable to all First Nations communities, highlighting the need for caution when applying the results to specific contexts.
The focus on dementia and cognitive impairment might have limited the exploration of other relevant topics, such as prevention or care strategies. It is also plausible that some relevant studies might not have been accessible due to publication restrictions or a lack of online availability. Despite efforts to conduct a comprehensive search, some studies might have been missed or excluded due to biases in study selection. These limitations underscore the importance of interpreting the study’s findings with caution and considering these limitations when applying the results to policy or practice.

3. Results

A total of 620 records were initially identified through database searches. Prior to screening, 296 records were removed, including 81 duplicates, 103 records deemed ineligible by automation tools, and 112 records removed for other reasons. This left 324 records for screening based on titles and abstracts. Of these, 186 records were excluded, resulting in 138 reports sought for retrieval. Eight reports could not be retrieved, leaving 130 reports for full-text assessment. Following this stage, 55 reports were excluded, including 43 irrelevant to First Nations people and 12 for which the full text was unavailable. Ultimately, 75 studies were included in the review (Figure 2).

3.1. Prevalence and Incidence of Dementia Among First Nations People

Estimating the prevalence of dementia is challenging due to several significant barriers, including socio-demographic bias, recruitment difficulties, remoteness, and language differences. These factors can impact the response rates, retention, and data quality of national and regional surveys, potentially resulting in an underestimation of dementia prevalence and incidence [19,20]. From a global perspective, dementia currently affects 57 million people and is projected to affect up to 153 million people by 2050 [21]. In 2019, there were 1.62 million deaths attributed to dementia, which means that it is the 7th highest cause of death and the 4th highest cause of death among individuals 70 years and older, in comparison to the number of deaths resulting from other common diseases affecting people across these age groups [22]. In Australia, dementia is known to be among the leading health challenges, with an estimated prevalence of 6.5% for individuals aged 65 years and over in 2007 [3]. More recent estimates of age- and sex-standardised prevalence of dementia in Australia have estimated its prevalence at 21.4 per 1000 people according to the NPS MedicineWise survey between 2018 and 2019, 31.4 per 1000 people based on the 2021 census and 65.9 per 1000 people according to the Australian Institute of Health and Welfare (AIHW) 2021 report [23]. Extrapolating these demographic findings for individuals aged 60 and over, the population estimated to have dementia in Australia ranged from 123,811 to 380,768 individuals in 2023 [23]. Notably, Welberry et al. [24] used linked administrative data to show that the age-standardised dementia incidence rate was 16.8 cases per 1000 person-years for people aged 65 years and over in Australia.
There are significant disparities in the prevalence of dementia between First Nations and non-First Nations populations. For instance, a community survey conducted in a Western Australian community found a 5.2 times greater prevalence of dementia in a First Nations community compared to the broader Australian population [25]. Similarly, Li et al. found that First Nations people aged over 45 years in the Northern Territory had a 2.6 times higher prevalence of dementia compared to their non-First Nations counterparts (3.7 vs. 1.1 cases per 100) in 2011 [3]. Overall, the age-adjusted prevalence of dementia was 3.9 times higher in the First Nations population compared to the non-First Nations population, whose age-adjusted prevalence of 2.6 per 100 was comparable to the national rate. Furthermore, the prevalence of dementia in a population from the Torres Strait and Northern Peninsula of Far North Queensland was found to be 14.2%, which was 2.87 times higher than that of the overall Australian population [4]. Additionally, the age-adjusted incidence was also higher among the First Nations population at 27.3 per 1000 person-years compared to 10.7 per 1000 person-years that was seen among the non-First Nations population of the Northern Territory [3]. The steadily increasing population of First Nations people aged 75 years and older may indeed pose an increased risk of dementia cases in these communities. As people live longer, the likelihood of age-related health issues, including dementia, also rises. Indeed, these findings highlight that not only is there a higher burden of dementia among the First Nations population, but also that there are higher rates of young-onset dementia. This demographic shift underscores the necessity for culturally sensitive healthcare services, support systems, and dementia care initiatives that cater to the distinct needs of First Nations communities. Proactive planning and investment in dementia prevention, diagnosis, and care can help mitigate the impact of this growing challenge [26].

3.2. Burden of Dementia Among First Nations People

3.2.1. Impact on Individuals, Families and Communities

For First Nations people, a dementia diagnosis can be a complex and distressing experience, often compounded by stigma, shame, fear, and denial [27,28]. Historical trauma and ongoing systemic racism can exacerbate these emotions, particularly for those who have experienced past traumas such as forced removals and institutionalisation. Notably, the diagnosis can lead to various consequences, including worsening cognitive function, memory impairments, confusion, difficulty with reasoning and problem-solving, and communication challenges. These changes can significantly impact an individual’s daily functioning and independence, affecting not only the person with dementia but also their families and broader communities [29,30]. In addition to its impact on cognitive functions, individuals with dementia may experience emotional and psychological effects such as anxiety, depression, fear and frustration, ultimately leading to feelings of disconnection and isolation as they adapt to the impairments in the setting of ongoing changes in cognitive function [31]. Furthermore, behavioural and psychiatric symptoms, including delusions and hallucinations, are significantly prevalent among individuals with dementia, which can exacerbate the impact of the disease on the mental health of individuals [32,33]. These symptoms can lead to changes in the types of connections with language and other cultural practices that are vital for identity and community belonging among First Nations people [34]
Individuals with dementia are also at risk of a decline across multiple physical, cognitive and emotional domains. This can take many forms, including changes in mobility, coordination, and physical functioning, as well as a range of other impairments in terms of the ability to engage and undertake a range of activities of daily living [35,36,37]. These cognitive and physical changes associated with dementia can significantly impact an individual’s quality of life, leading to increased reliance on caregivers. Families and caregivers often take on substantial emotional, physical, and financial responsibilities in First Nations communities, frequently without sufficient support. Caregiving in these communities involves unique cultural considerations and obligations, including individualised care that respects the person’s cultural identity, language, and connection to Country. Caregivers may also have significant cultural responsibilities, such as maintaining community connections and preserving cultural knowledge. This was examined in a study set in a First Nations community in Australia, in which it was found that dementia care was reported as being an obligation of family members to maintain their connection to home and community [27]. This type of unpaid caregiving provided by close family and friends across the First Nations community is called informal caregiving. It is usually offered in the absence of any specific expertise or skills in the intricacies of dementia care [27].
Providing culturally appropriate dementia care as well as supporting caregivers of individuals with dementia is complex and associated with several physical, social, interpersonal and financial burdens [38,39]. The challenges related to providing dementia care may lead to interpersonal difficulties and strain among families, particularly in situations where younger generations have some competing responsibilities, which include maintaining meaningful employment, caring for family members and the demands of caring for parents suffering from dementia [40,41].

3.2.2. Economic Cost of Dementia

The disparities in dementia prevalence between First Nations and non-First Nations communities underscore the need for culturally appropriate care. This challenge is compounded by significant financial and economic pressures on individuals, families, and the broader community. The monetary cost associated with dementia is particularly related to the severity of the disease, which may result in impairments in mobility, reduced or loss of independence across different activities of daily living, as well as declining health state. This may, in turn, lead to significantly higher healthcare utilisation, increased out-of-pocket costs, as well as informal care costs, which occur in the setting of reduced levels of productivity across situations in which informal caregivers have to take a prolonged time off work and, in some cases, may have to leave the paid work sector [42].
The health costs associated with dementia vary across different countries and are crucially dependent on the type of health system. This, in turn, depends partly on each country’s availability and access to healthcare, welfare and social insurance. These estimates also depend on the approach used in the evaluation and how the costs associated with this condition are categorised. The costs of illness (COI) are typically categorised into direct and indirect costs. Direct costs include medical and non-medical expenses that can be directly attributed to the impact of dementia. Direct medical costs encompass healthcare services and resource utilisation, including expenses associated with medical appointments, medications, hospital stays, diagnostic procedures, allied health services, and community services. Direct non-medical costs include those incurred by the individual or their caregivers and refer to expenses related to modifying their environment due to the disease, as well as dietary considerations attributable to dementia. This also includes the money and time spent commuting to medical appointments linked to the disease (Figure 3).
There is currently a lack of empirical costs of illness data due to dementia for First Nations people, and further health economics-based studies are needed to evaluate the direct and indirect costs associated with dementia among First Nations people. However, since this population faces higher rates of the condition with barriers such as remoteness from specialist clinics, individuals with dementia from First Nations backgrounds are more likely to encounter increased out-of-pocket healthcare costs in terms of expenses associated with transportation and accommodation. Further costs accrued through home modifications to ensure safety and accessibility for individuals with dementia can be substantial, particularly across remote communities with limited health-related resources [43].
Indirect costs, on the other hand, will typically include productivity losses to the individual or their caregiver due to morbidity, absenteeism, early retirement, and mortality attributable to the disease. Indirect costs are the major drivers of the cost of illness in dementia, which in part is due to the loss of independence and concomitant reliance on informal care as the disease progresses. Estimates of the share of the cost arising from informal dementia care range from about 40% [42] to more than half [44] of the total cost of illness. Given the unique cultural expectations of caregiving within families, which place a significant economic burden on caregivers, there is an increased likelihood of reduced income, working hours or complete job cessation.
There is the added challenge of quantifying some health-associated costs linked to pain, social exclusion, restriction, or, in some cases, loss of community participation and leadership [45,46]. These hidden costs, often referred to as intangible costs, are difficult to quantify despite having significant economic implications for individuals with dementia and society at large [45,46]. Developing novel strategies to evaluate these indirect costs is essential. The finding that empirical data on the costs of dementia among First Nations people are currently limited underscores the need for studies specifically evaluating both the direct and indirect costs associated with dementia in this population.

3.3. Associated Risk Factors of Dementia Among First Nation Australians

Understanding risk factors for dementia among First Nations Australians is essential for developing culturally responsive prevention and management strategies [47]. First Nations peoples experience higher dementia prevalence than non-Indigenous Australians, largely driven by modifiable risk factors alongside non-modifiable factors such as age, genetics, and gender [25,48,49,50,51]. Identifying modifiable factors, those that can be addressed through interventions, provides critical opportunities to reduce dementia burden and inform culturally tailored programmes [52,53]. Key modifiable risk factors identified in this review include education, physical inactivity, alcohol consumption, smoking, social isolation, depression, obesity, diabetes, hypertension, stroke, hearing loss, and environmental exposures [54,55].
Notably, higher educational attainment and sustained cognitive engagement across the lifespan are associated with reduced dementia risk [54,56]. Among First Nations Australians aged 65 and older, lower education levels, particularly in regional and remote communities, likely contribute to increased dementia prevalence [57,58]. Addressing educational disparities through culturally safe learning and cognitive stimulation programmes may support long-term cognitive resilience, highlighting the importance of embedding education-focused initiatives within broader dementia management strategies (Figure 4).
Physical inactivity is also a well-established risk factor for dementia, with 2.5–7.9% of the dementia burden among First Nations Australians attributable to low activity levels [48,59]. Globally, even modest increases in physical activity can prevent substantial numbers of dementia cases [54,55]. Developing culturally tailored exercise programmes, including telehealth-based options for remote communities, may provide a feasible and effective approach to reduce dementia risk while fostering engagement and community participation.
Lifestyle factors such as smoking, alcohol use, and seclusion also influence dementia risk. Particularly, chronic alcohol misuse increases dementia risk, though moderate consumption may have a protective effect in later life [60,61,62]. Excessive alcohol contributes minimally (0.7%) to dementia cases among First Nations adults, suggesting other factors are more critical [48]. Smoking, by contrast, is a significant contributor, linked to nearly 50% of adult deaths and elevated dementia risk [59,63,64]. Smoking cessation interventions, particularly those tailored to the cultural context, may yield substantial benefits for cognitive health and overall well-being.
While exposure to pollutants such as NO2, particulate matter, and CO is associated with dementia risk [65]. First Nations Australians often reside in regional or remote areas with lower exposure, making air pollution a relatively minor contributor. Other socioeconomic and lifestyle factors have a greater impact [48,57]. In addition, social isolation and depression strongly influence dementia risk [59]. Programmes that foster social engagement, community connectivity, and culturally appropriate mental health support will likely reduce dementia incidence and enhance quality of life, underscoring the importance of holistic, strengths-based interventions.
Furthermore, metabolic and vascular factors, including obesity, diabetes, hypertension, and stroke, represent critical modifiable contributors to dementia [66,67,68,69]. Particularly, the prevalence of overweight and obesity among First Nations adults is higher than in non-Indigenous populations [26,48,59]. Hypertension and stroke are also major modifiable contributors, accounting for 6.3% and 6% of dementia risk, respectively [59,70,71,72], Wang, Knight [73]. Targeted management of vascular and metabolic risk factors is essential for prevention (Figure 4).
Additionally, hearing impairment, which accounts for 2.9% of dementia cases among First Nations Australians [59,74,75], reduces neural stimulation and accelerates cognitive decline. Early identification and culturally responsive hearing interventions may improve cognitive outcomes and enhance engagement in community life.
While most existing research on dementia among First Nations peoples has focused on sociocultural and environmental determinants, the potential contribution of genetic factors remains underexplored. It is plausible that population-specific genetic patterns, such as endogamy, founder effects, or unique allele frequencies, may influence susceptibility to dementia or interact with environmental and lifestyle factors to modify disease risk. However, data in this area are scarce, largely due to the ethical, cultural, and logistical challenges of conducting genetic studies in First Nations populations. Future research conducted in genuine partnership with communities could provide valuable insight into the genetic underpinnings of dementia, while respecting cultural protocols and ensuring data sovereignty. Integrating genetic and anthropological perspectives may ultimately help clarify the multifactorial nature of dementia risk in First Nations peoples.
Together, these findings highlight the multidimensional nature of dementia risk among First Nations Australians and the need for culturally responsive, community-led strategies that address modifiable lifestyle, social, metabolic, and environmental factors. Integrating these insights into prevention and management initiatives can guide tailored interventions, support early detection, and inform policies that strengthen equity in dementia care. Addressing these risk factors in culturally safe ways provides a pathway to reducing dementia prevalence, improving quality of life, and fostering community resilience among First Nations Australians.

3.4. Culturally Responsive Approaches to Dementia Prevention, Intervention, and Care

Dementia prevention and interventions designed for the general population often overlook the cultural, social, and historical contexts that shape the experiences of First Nations Australians [76]. Standard biomedical approaches may not align with First Nations perspectives, which emphasise the interconnectedness of physical, emotional, spiritual, and social well-being [27,77]. Culturally adapting existing interventions is essential to enhance their relevance, accessibility, and effectiveness. This process involves integrating Indigenous worldviews, traditional healing practices, language, and community-based approaches into dementia care models, ensuring they reflect First Nations values and address systemic barriers to care. One of the most essential elements of cultural adaptation is integrating First Nations knowledge and perspectives with mainstream Western intervention and prevention models. Specific dementia care interventions are more successful when they are co-designed with First Nations Elders, community leaders, and health workers [78]. In line with this, the “Good Spirit, Good Life” programme was developed for Aboriginal and Torres Strait Islander communities through extensive community consultation to ensure cultural relevance [79]. These community-led adaptations may help contribute to the formation of trust between clinicians and individuals with dementia and help ensure that these interventions align with First Nations cultural values.
In addition, language and communication play a crucial role in the effectiveness of dementia interventions. Many First Nations Australians speak English as a second language or have varying literacy levels, which can make standard dementia resources ineffective [80]. Successful adaptations involve using plain language and visual aids instead of complex medical terminology, translating materials into First Nations languages, and employing storytelling and yarning circles to communicate information in a culturally appropriate way [81,82]. These approaches may help ensure that dementia-related knowledge is accessible and meaningful to First Nations communities. A successful culturally adapted intervention is the Kimberley First Nations Cognitive Assessment (KICA), which is a dementia screening tool developed explicitly for First Nations Australians, incorporating culturally relevant questions and assessment methods [83].
Traditional healing practices and land-based activities are also integral to helping ensure dementia prevention and intervention are informed by cultural practices [16,84]. First Nations healing methods, including bush medicine, connection to Country, and spiritual ceremonies, are integral to the health and well-being of First Nations peoples. Dementia prevention programmes that incorporate culturally relevant elements have shown greater success in engaging First Nations Australians compared to those that do not [85]. Moreover, programmes that include time spent on Country have been shown to enhance the emotional and mental well-being of First Nations Elders with dementia. Despite recent progress in developing culturally adapted dementia interventions, several challenges remain. Limited funding and resources for First Nations-led programmes hinder the expansion of culturally tailored dementia care. There is also a shortage of trained First Nations dementia care workers who can deliver these programmes effectively. Specific efforts focusing on expanding First Nations-led dementia care initiatives, increasing cultural competency training for healthcare providers, and ensuring long-term funding for successful programmes are highlighted below (Table 1).

3.4.1. Promoting Community-Based Initiatives

Community-based initiatives have a central role in helping to address the burden of dementia among First Nations Australians. Given the strong emphasis on kinship, collective well-being, and connection to Country in First Nations communities, dementia prevention strategies must be deeply embedded within local communities [77,82]. These initiatives tend to focus on the development and promotion of culturally safe interventions, including promoting awareness around the importance of early diagnosis of dementia, providing caregiver training, and fostering a greater level of intergenerational engagement [77,82]. A community-led approach has the potential to help ensure that dementia care is developed by and for First Nations Australians rather than imposing Western models that may not align with Indigenous worldviews. Increasing dementia awareness through culturally appropriate education programmes also helps dispel misconceptions and encourages early detection [106]. By involving local Elders and First Nations health workers, trust in healthcare services may be strengthened, thereby helping to reduce key barriers to dementia care across rural and remote communities [106,107]. In addition, empowering communities to participate actively in dementia prevention and management fosters ownership and long-term commitment. Recent event suggests that community-led dementia care programmes result in higher engagement, better health outcomes, and stronger caregiver support [27] (Table 1).
First Nations-led dementia support networks are another essential aspect of community-based care. Support networks provide crucial assistance to caregivers, families, and individuals living with dementia services [80,83]. Programmes that engage older First Nations Australians with early-stage dementia as mentors may help reinforce cultural knowledge, maintain and strengthen social connections, and help to foster peer support. Moreover, gender-specific support groups, including the Men’s and Women’s Groups for Dementia prevention, are beneficial in developing culturally appropriate spaces for discussions on various aspects of dementia prevention, as well as providing emotional support for individuals with dementia and their caregivers. These programmes also have the potential to help reduce levels of social isolation associated with a diagnosis of dementia, as well as help to strengthen informal dementia care networks [9,108].
Furthermore, developing dementia-friendly communities may be helpful in terms of helping reduce stigma, which in turn may be beneficial in terms of ensuring that First Nations people with dementia can continue to participate across a range of activities of daily living [109]. Cultural healing and connection to Country programmes, which incorporate storytelling, art, and time on Country, have been shown to have a positive impact on emotional well-being [81]. Intergenerational knowledge-sharing programmes engage young people in caring for elders with dementia, and they may help them be role models in the community by helping to foster respect and strengthen cultural identity across First Nations communities [82]. Elders and First Nations health workers may help to drive community awareness and may also have a crucial role in normalising conversations about dementia and promoting early diagnosis [82]. These initiatives may therefore be significant in terms of helping to reduce both stigma and shame around the diagnosis of dementia, thereby leading to measures aimed at promoting inclusive, community-driven care.
Despite the success of some community-based dementia intervention and prevention initiatives, several challenges, including limited funding, workforce shortages, and geographic barriers, hinder the sustainability and accessibility of these community-based programmes. Many programmes rely on short-term grants, while the lack of trained First Nations dementia enlightenment workers underscores the need for expanded training and employment opportunities. Remote communities also face difficulties in accessing dementia-specific healthcare and information services [110]. There may be difficulties in finding staff to support these community-based programmes. Recognising and addressing these issues is challenging and complex and will undoubtedly require a long-term investment, culturally safe training for healthcare workers, and stronger collaboration between healthcare settings, First Nations communities, and policymakers. Community-based initiatives can provide culturally relevant, effective intervention and prevention for First Nations Australians by prioritising First Nations knowledge, strengthening local support networks, and fostering dementia-friendly communities.

3.4.2. Designing Culturally Responsive Dementia Care Models

Dementia care for First Nations people must be culturally responsive. Still, it is essential that there is a broader acknowledgement of kinship structures, historical experiences, and systemic healthcare disparities. Models of care underpinned by culturally appropriate values and care are crucial to aid the diagnosis, management, and thereby improve the quality of life for First Nations Australians living with dementia [27,111]. First Nations health is traditionally understood as a holistic concept that integrates physical, emotional, spiritual, and social aspects of well-being [112]. Therefore, effective and individualised dementia care must align with this worldview, which considers that dementia is not merely a medical condition but a cultural and social experience. As part of this framework, the broader social and cultural aspects of dementia need to be acknowledged (Table 1).
A key aspect in providing and delivering culturally appropriate dementia care is the need to develop a renewed focus on traditional healing, as well as further integrating traditional healing modes with a Western-based medical framework. Many First Nations Australians value bush medicine, spiritual healing, and connection to Country, which support memory, reduce anxiety, and maintain cultural identity [85]. A previous study found that 18.7% of First Nations people with dementia used traditional medicine in their care, highlighting the value and importance that First Nations people place on conventional modes of healing [113]. However, several essential challenges have made it complex to integrate traditional and Western-based approaches. This includes limited formal recognition, scarce scientific validation, and a shortage of culturally trained professionals [109,110]. Studies show that First Nations patients are more likely to engage with health services when First Nations health workers and culturally safe spaces are available [109]. Incorporating First Nations liaison officers, cultural training for healthcare providers, and a broader recognition of traditional healing may help enhance trust between First Nations people and the wider community and improve levels of engagement across different aspects of dementia-related healthcare [106]. Further collaboration involving First Nations communities, researchers, and healthcare providers is essential for the meaningful and sustainable integration of traditional healing into dementia care.
Current dementia assessment tools used in clinical practice have several limitations, which affect their effectiveness in both primary and hospital-based settings. Standard Western diagnostic tools, including the Mini-Mental State Examination (MMSE), often fail to accommodate cultural and linguistic diversity [114]. First Nations Australians may score differently on these tests due to variations in education, language, and cultural perceptions of memory and ageing. To address this gap in the assessment tools, researchers have recently developed culturally adapted screening tools, such as the Kimberley Indigenous Cognitive Assessment (KICA), which incorporates culturally relevant questions and familiar imagery [83]. The KICA has a broad range of clinical applications and may help enhance the early detection and diagnosis of dementia, enabling timely intervention. Additionally, raising awareness through culturally adapted resources, such as storytelling and visual communication, can help First Nations elders and families gain a deeper understanding of the various aspects of dementia, including its diagnosis, management, and long-term trajectory.
Effective dementia care for First Nations Australians will be holistic and community-driven, integrating aspects of the Western model with community-based knowledge. At the same time, there needs to be a broader recognition of the role of First Nations knowledge and healing practices. Programmes that integrate culturally adapted diagnostic tools, First Nations healthcare workers, and culturally safe aged care facilities have the potential to significantly improve dementia care outcomes in First Nations communities.

3.4.3. Strengthening Support for Caregivers and Families

Caregivers have a crucial role in helping support individuals with dementia, particularly in First Nations Australian communities, where family and kinship networks are central to health and well-being. Among First Nations communities, caregiving is often a shared responsibility among First Nations people, with multiple family members contributing rather than relying on a single primary caregiver [77,80]. This kinship approach provides emotional and spiritual support, but can also lead to caregiving stress when resources and support services are inadequate.
Previous studies have found that First Nations families may avoid mainstream dementia services due to cultural and historical mistrust of the healthcare system [115]. As a result, many families provide care at home for as long as possible, often without access to formal support. Addressing these barriers requires targeted interventions, such as increasing the availability of First Nations-specific dementia services and ensuring healthcare professionals are trained in cultural safety.
Providing culturally appropriate dementia education for caregivers is essential to help improve the quality of care for individuals with dementia, as well as help reduce levels of stress. Aboriginal health services can enhance care by employing storytelling, yarning circles, and visual aids to improve understanding around different aspects related to dementia care [81]. Collaborating with First Nations communities to develop training materials ensures cultural relevance and accessibility. Programmes aimed at enhancing caregiver education help families recognise dementia symptoms and navigate available support services [80,83]. Practical caregiver training, including strategies for managing behavioural symptoms and ensuring adequate nutrition, can significantly improve caregiver confidence and the well-being of individuals with dementia.
Beyond education programmes for individuals with dementia as well as their caregivers, caregiving responsibilities often lead to economic hardship, as many caregivers reduce work hours or leave employment altogether to provide full-time care [82]. The financial strain, combined with limited mental health support, increases the risk of caregiver burnout. Interventions aimed at strengthening social support networks are critical in helping mitigate the burden of dementia. Culturally tailored, in-person and online support groups offer caregivers emotional support, shared experiences, and practical caregiving strategies. In terms of other social-based interventions, financial assistance programmes and workplace policies, such as paid leave for caregivers, could help alleviate economic strain and enable caregivers to balance work and caregiving responsibilities [116].
Utilising respite for caregivers of individuals is another underutilised resource. Many caregivers hesitate to use respite services due to concerns about culturally unsafe environments. Expanding access to culturally appropriate respite care, where elders are supported in familiar settings by First Nations staff, can reduce caregiver stress and sustain long-term caregiving capacity [117]. Programmes such as on-country respite services, which integrate traditional cultural practices, have shown promise in enhancing levels of caregiver well-being while ensuring elders receive high-quality care in a familiar and comforting environment.
Holistic and culturally responsive caregiver support programmes incorporating education, financial assistance, peer support, and culturally appropriate respite will be essential to help maintain sustainable and culturally sensitive dementia care across First Nations communities. Strengthening these interventions will be crucial in future efforts to enhance caregiver resilience and improve outcomes for both caregivers and individuals living with dementia.

3.5. Integrating Culturally Responsive End-of-Life Care

End-of-life care for First Nations Australians with dementia requires a culturally sensitive approach that respects First Nations perspectives on death, dying, and the continuation of life. In many First Nations communities, death is viewed as a transition rather than an endpoint, deeply connected to cultural beliefs, ancestral spirits, and Country. Practices such as being surrounded by family and community, engaging in traditional rituals, and returning to Country before passing are significant for many First Nations peoples [82,118]. However, mainstream palliative care services often fail to acknowledge or incorporate these essential cultural elements [110]. Therefore, cultural practices should be integrated into mainstream palliative care.
In spite of the importance of culturally appropriate end-of-life care, several barriers limit First Nations people’s access to palliative services. Many remote communities lack specialised palliative care that understands First Nations cultural needs [119]. Additionally, language barriers, medical jargon, and the absence of interpreters in some healthcare settings make it difficult for families to engage in discussions about end-of-life care [120]. Historical experiences of racism and discrimination have also contributed to distrust in mainstream healthcare systems, further discouraging First Nations peoples from seeking formal palliative care services [107].
To help address these critical clinical challenges, several initiatives have been developed to improve the accessibility and cultural relevance of end-of-life care for First Nations Australians. Return to Country programmes assist individuals in travelling back to their ancestral land before passing, ensuring they remain connected to Country [82]. Additionally, shifting the model of care to empower families where healthcare professionals act as supporters rather than primary decision-makers aligns with First Nations values and may further help strengthen trust in the healthcare system [121].
Families have a central role in supporting First Nations’ end-of-life care, and their needs must be addressed alongside those of the person with dementia. Providing caregivers with culturally appropriate resources on symptom management, pain relief, and traditional healing practices can improve care quality and reduce stress [82]. Flexible care models, such as home-based palliative care and mobile outreach services, can help ensure that end-of-life care aligns with cultural preferences while remaining accessible to those in remote areas. Ensuring culturally appropriate end-of-life care for First Nations Australians with dementia requires a shift toward holistic, community-led, and culturally informed palliative care services. Addressing barriers related to access, mistrust, and communication is crucial for enabling individuals to experience a peaceful and culturally respectful end-of-life process. Expanding First Nations-led initiatives and increasing awareness of First Nations’ perspectives on death and dying among healthcare providers will also be instrumental in helping enhance end-of-life care outcomes.

3.6. Promoting Culturally Responsive Policy and Programme Frameworks

Developing effective, equitable and culturally appropriate policies and programmes is essential to addressing the disproportionate burden of dementia among First Nations Australians. In view of the complex interplay of social determinants of health, cultural perspectives on ageing, and healthcare access disparities, policies must be culturally responsive, community-driven, and supported by long-term government commitment.
We therefore suggest that programmes aimed at facilitating culturally safe care policies for individuals with dementia are fundamental to help ensure that First Nations people receive respectful, holistic, and community-centred support. Further studies aimed at embedding cultural safety as part of healthcare standards, with mandatory cultural competence training for all healthcare workers involved in dementia care, may have several positive long-term outcomes [27]. Establishing First Nations-led accreditation processes for aged care and dementia services will help to ensure these services meet cultural safety benchmarks and align with First Nations’ perspectives on health, kinship, and connection to Country [85,122]. Additionally, improving access to dementia diagnosis and care is critical, particularly across regional and remote areas. Expanding mobile dementia clinics and telehealth services across a range of remote First Nations communities may be helpful in terms of helping to bridge these geographical barriers [82,97].
A well-trained healthcare workforce is essential for delivering culturally appropriate dementia care and for increasing First Nations representation in the healthcare sector. Expanding First Nations health worker roles in dementia care through targeted training programmes will build local expertise, which will be important as part of future work [108,123] and future work aimed at developing pathways for First Nations students to study and embark on training programmes across medicine, nursing, and allied health, with a clinical focus on dementia care, has the potential to help enhance long-term workforce sustainability [9]. Scholarships and financial incentives for First Nations healthcare professionals to work in dementia care settings can potentially encourage participation further. Establishing dementia support worker programmes can also enhance care delivery by training community-based dementia support workers who assist families with home-based care, respite, and navigating services [8,123]. Involving Elders as cultural mentors in dementia care programmes will ensure that First Nations knowledge and traditions remain central to care practices [78,79].
Community-led dementia programmes are essential to help ensure culturally appropriate care. National Aboriginal Community Controlled Health Organisations (NACCHOS) is the national authority on Aboriginal and Torres Strait Islander primary health care (NACCHOs). Expanding funding for NACCHO will further facilitate the development of First Nations-led dementia services, specifically tailored to the needs of First Nations communities. Initiatives, including the Dementia Yarning Circles and Elders’ programmes, provide valuable peer support and cultural continuity [103]. Intergenerational programmes that connect young people with Elders can help reduce stigma and strengthen cultural identity [124]. Developing dementia-friendly communities through awareness campaigns, respite care homes, and cultural healing centres will help ensure clinical care for individuals with dementia aligns with First Nations values [123].
There is currently a need for long-term sustainable funding and government commitment to help ensure the long-term success of dementia policies and programmes across Australia’s metropolitan, regional and remote regions. As such, allocating long-term funding for First Nations dementia care, rather than relying on short-term grants, will provide stability and allow for meaningful programme development [125]. Establishing a dedicated First Nations Dementia Fund, managed by First Nations communities, can support culturally tailored research and services, ensuring that policies and programmes remain relevant to the evolving needs of First Nations Australians [82].
Based on recent work around funding for dementia care for First Nations people, we also suggest that a comprehensive policy and programme approach is essential to help reduce the burden of dementia in First Nations Australians. By fostering and promoting a healthcare system that encourages mutual respect and integrates the perspectives of First Nations peoples, policymakers may be in a position to develop a more inclusive and effective dementia care framework that upholds the dignity, autonomy, and cultural identity of First Nations Australians.

3.7. Barriers to Dementia Care Among First Nations People

3.7.1. Cultural and Conceptual Barriers

One of the significant challenges in terms of providing dementia-specific care for Aboriginal and Torres Strait Islander peoples is the need to strengthen community awareness of the different symptoms associated with dementia, as well as develop new and targeted preventative-based interventions. First Nations people have strong ties to the physical and social environment and tend to emphasise the connectedness to other community members. This, in turn, informs concepts around the diagnosis of dementia, which may differ from Western models of a disease.
Previous studies have highlighted gaps in understanding, particularly in relation to the causes of dementia [8,126] and the role of addressing and targeting modifiable risk factors associated with the development of neurocognitive disorders [92,93]. However, it is essential to exercise caution when interpreting the significance of the findings and applying them to First Nations communities, as opposed to non-First Nations communities. Moreover, there is an essential cultural disparity between the Western and First Nations viewpoints in terms of how dementia should be conceptualised and treated among First Nations communities.
Among First Nations communities, dementia is often seen as a natural progression of life that should be supported and cared for in a supportive way, rather than a type of pathology that needs to be addressed through medical-based interventions [34]. However, there are also differences in terms of how non-First Nations persons view dementia [8,92]. Nevertheless, a key focus to enhance the detection, prevention and care of patients with dementia is the development of flexible and culturally appropriate interventions. Additionally, providing psychoeducation-based interventions that utilise easily accessible resources to adequately inform patients and their families may also be beneficial.

3.7.2. Limited Access to Resources and Support

One of the recurrent themes identified in the literature review was the lack of readily available resources regarding how and where help and care for dementia patients can be provided [27,80]. Furthermore, in Bryant et al.’s study (2021), one of the key issues that was identified was the lack of resources that accommodated varying educational levels within the community and the need for visual materials in place of the current text-based resources [80]. In terms of currently existing visual educational materials, there is a video and flip-chart resource titled “Looking Out for Dementia” [127], which is written in English alongside three First Nations languages; however, its accessibility is limited due to its being unavailable online. Recently, another project themed “Caring for Spirit” was established to create an online multimedia resource aimed at informing families and caregivers of First Nations patients about the types of clinical presentations associated with dementia, as well as its management [94].
The “Caring for Spirit” project was a collaborative effort, working closely with respected Aboriginal Elders, colleagues, and community members. The completed resource is now readily available online, ensuring its widespread accessibility and potential to positively impact a broad range of healthcare settings (https://caringforspirit.neura.edu.au/). Sustaining this initiative to ensure the continued development of culturally appropriate and accessible resources for people of all educational attainment levels is crucial in enhancing the care and well-being of individuals with dementia and their families.
One of the critical barriers that was highlighted in the literature review included limited educational resources and training opportunities available for community healthcare staff, including those located in remote locations [76,80]. A lack of training and educational resources can negatively impact the quality of care among First Nations people, including a delayed diagnosis of dementia, as well as the spread of outdated or inaccurate information, leading to a restricted scope of care. To address this issue, a tele-mentoring and educational programme known as Dementia ECHO was introduced in Queensland, Australia [12]. To facilitate knowledge sharing and collaboration, the project hosted monthly teleconferencing sessions. These sessions brought together professionals from diverse backgrounds and locations, allowing them to exchange insights, expertise, and best practices in dementia care. The project received positive feedback, with attendees reporting significant improvements in their knowledge of dementia and dementia care, as well as reduced feelings of professional isolation [12].

3.7.3. Logistical Challenges

Providing and delivering individualised dementia care to First Nations patients poses significant logistical challenges, particularly for those residing in remote areas, where physical distance to healthcare services is a substantial obstacle in terms of delivering appropriate dementia-based care. To address this disparity, the DREAMT Trial was initiated, aiming to bridge the gap in service delivery affecting rural and remote communities [98]. Through a partnership with Aboriginal and Islander Community-Controlled Health Services (AICCHS), this project aimed to increase dementia awareness and promote the adoption of Telehealth for remote Geriatrician consultations. The community responded favourably to Telehealth consultations and was seen as being a more convenient, inclusive, and patient-centred alternative to traditional models of care [76].

3.7.4. Stigma and Denial

There is a range of cultural and intersocial hurdles that occur across First Nations communities, which may at times delay and prevent the early detection and diagnosis of dementia. This includes denial in relation to the diagnosis of dementia, as well as stigma associated with a diagnosis of dementia, which may at times be an essential barrier against the label of dementia, as well as a barrier for First Nations people identifying appropriate services and healthcare interventions [27,80]. In an Aboriginal community-based interview conducted by Cox et al. (2019), it was found that many family members would be in denial or hide their family member’s cognitive decline until it was no longer feasible to look after their family member, which means that appropriate dementia-based care was delayed [27]. These social barriers may be further compounded by the systematised prejudice and racism that First Nations people encountered because of previous interactions with the healthcare system and the broader community in the past [76].

3.7.5. Systemic Healthcare Barriers

In terms of previous studies examining interactions with the healthcare system, Haydon et al. (2023) found that First Nations women were wrongly assumed to have been under the influence of substances when, in fact, they were suffering from the effects of hyperglycaemia [76]. Individuals with dementia who present with behavioural changes may have their symptoms overlooked due to social stigmatisation, lack of understanding about the different symptoms associated with dementia, as well as prejudice around the diagnosis of dementia.
Finally, prioritising dementia care is complex when competing healthcare and social needs are present across different community settings. Hence, it is essential for further work aimed at developing a more nuanced understanding of the other healthcare and social needs of Aboriginal and Torres Strait Islanders across a range of metropolitan and regional-based settings [76]. Some of the previously identified social issues include overcrowding, high living costs in remote areas, and limited transportation options [82]. Furthermore, diagnoses of dementia may be delayed or missed until a family member raises concern or has reached a point of crisis, which may in part be due to other, more urgent medical issues [80]. Previous studies have recommended employing a dementia coordinator who can oversee dementia care and management in a manner similar to how coordinators have been utilised for other chronic diseases, such as diabetes mellitus [80].

3.8. Enablers in Enhancing Dementia Care Among First Nations People

3.8.1. Culturally Appropriate Care

Primary healthcare providers have a central and critical role in helping to enhance the clinical care of First Nations people with dementia and other cognitive symptoms. Primary healthcare providers’ key roles include caring for individuals with dementia, organising referrals to speciality dementia services, and supporting patients and their families on their journey with dementia. Recently established services, including the Aboriginal and Torres Strait Islander Community-Controlled Health Services (ATSICCHSs), are critical in providing and delivering culturally appropriate and accessible care for persons of Aboriginal and Torres Strait Islander background [80]. These services act as the primary point of contact for medical concerns and serve an essential role in the early detection and management of dementia symptoms.

3.8.2. Early Detection and Diagnosis

One central initiative has been the development of the Aboriginal and Torres Strait Islander Health Check, which is a government-driven programme aimed at promoting the health of First Nations people through the development and implementation of prevention-based interventions [80]. As part of this initiative, individuals over 50 years old are encouraged to undergo cognitive assessment, which may assist in the early detection and diagnosis of cognitive impairment.
The Let’s CHAT Dementia programme was established to examine how implementing a structured model of care could enhance dementia diagnosis among Aboriginal and Torres Strait Islander people across a range of primary care settings [88]. The Let’s CHAT Dementia programme is a culturally responsive approach that involves integrating clinician education, establishing decision-support tools and implementing cognitive screening processes. It was introduced to the Aboriginal Community-Controlled Health Services setting [88]. Following the implementation of this program, documented diagnoses of cognitive impairment and dementia among Aboriginal patients doubled, highlighting the effectiveness of tailored strategies in the primary healthcare context for improving the early detection and management of dementia [89]. Based on findings from this program, a set of guidelines was developed for General Practitioners, prioritising inclusivity, consensus-building, and cultural values, to improve dementia diagnosis and management for Aboriginal and Torres Strait Islander patients [128]. These guidelines emphasise the need for culturally safe practices, including using culturally appropriate assessment tools, the involvement of family and community in care planning, and providing holistic support that addresses the patient’s social and emotional needs [129]. In addition to providing a timely diagnosis of dementia, there has been renewed interest in the area of brain health and preventative neurology, as well as interventions aimed at enhancing brain health, which may have the potential to help delay the onset and progression of symptoms associated with dementia.
A new study has been proposed to further enhance the effectiveness of ATSICCHS’s role in dementia care, which builds on further work as part of the Let’s CHAT study [103]. This study aimed to identify weaknesses and gaps in current practices through various approaches, including interviews with local stakeholders, auditing clinical records, and implementing action plans to address these issues, which may also be effective in terms of helping safeguard their patients against dementia [103]. Such initiatives hold promise in helping strengthen dementia care within ATSICCHSs, although further research in this field is needed.

3.8.3. Holistic and Life-Centred Approach

Future work should focus on providing holistic dementia care for Aboriginal and Torres Strait Islander patients, complementing existing efforts to improve clinical assessments. This approach would help prioritise the values of First Nations people, including social support and quality of life, which may take precedence over Western medical interventions [76,80]. For instance, in a qualitative study undertaken by Haydon et al. (2023) in which staff from three Aboriginal Community Health Services and their community members were interviewed, participants reported the importance of social support, which is in keeping with the way that dementia is seen as being more of a social issue rather than an individualised medical condition among First Nations communities [76]. A key finding of this study was that maintaining and ensuring a high quality of life was crucial, and one of the central findings of this study is a life-centred approach based on familiarity and safety [76]. The strong bond further reinforces the value of familiarity, social connection, and community that First Nations people have to their traditional lands [82]. Therefore, it is crucial to develop care systems that support individuals with dementia and help First Nations people maintain strong social connections, community relationships, and a connection to their country.
In recent efforts to help bridge the cultural divide in dementia care among First Nations people, the Kuranya project was proposed to balance culturally appropriate care and connection to the community with dementia-specific care [101]. The project was developed as a way of getting family members to be employed as formal caregivers of First Nations people, but given logistical difficulties, it was challenging to get this project completed [101].

3.8.4. Workforce Development and Cultural Safety

From the perspective of providing practical care for Aboriginal and Torres Strait Islander patients with dementia, it is vital to increase the First Nations health and aged care workforce, which will be helpful in terms of enhancing cultural safety training among a range of health and aged care workers. Indeed, one of the most significant challenges encountered by First Nations carers was the lack of culturally safe respite options, or in some cases, limited respite options across some of the remote locations [34]. In a qualitative interview-based study conducted by Smith et al. (2011), Aboriginal carers voiced the importance of cultural training and cultural awareness by staff and how they need time to establish confidence and trust in an external caregiving agency to look after their relatives [82].
To help bridge this cultural gap, a project was initiated to develop and deliver a culturally sensitive educational programme for non-First Nations healthcare workers [96]. Aboriginal Elders co-designed and co-facilitated this programme, ensuring its cultural relevance and authenticity. The programme received positive feedback from participating students. Building on this success, further initiatives are recommended to provide ongoing training and education for healthcare staff, ultimately enhancing the quality of care provided to First Nations people with dementia [96].

3.8.5. Government Initiatives and Programmes

From a governmental perspective, the National Aboriginal and Torres Strait Islander Flexible Aged Care (NATSIFAC) programme has been established to support and promote holistic aged care for elderly Aboriginal and Torres Strait Islander people. This programme is delivered through ATSICCHSs and Aboriginal Community-Controlled Organisations (ACCHOs), ensuring cultural safety and a strong connection to the community and Country [130]. However, one of the significant limitations of this programme is that it is only for First Nations people living in rural and remote areas. Hence, expanding initiatives, including NATSIFAC, across a range of other First Nations communities will be a crucial step in ensuring equitable access to aged care services that respect the cultural identity of First Nations people, as well as promoting and safeguarding their well-being.

3.9. Recommended Strategies for Culturally Responsive Dementia Care

There is currently a clinical need to further define and address the central health-related priorities among First Nations people who are at risk or who are living with dementia. These key areas have been outlined in the National Health and Medical Research Council’s (NHMRC) Roadmap for Dementia Research and Translation [95]. Overall, these recommendations, as outlined in the Roadmap for Dementia Research and Translation, align with the current challenges and areas for improvement as identified in this literature review (Table 2).
At a national health research funding level, the NHMRC has identified the need to enhance health literacy to help improve dementia awareness and understanding across First Nations communities. Firstly, this includes developing educational resources to help support health and aged care professionals in the delivery of culturally appropriate dementia care [95]. Secondly, the NHMRC has also recommended greater research efforts aimed at improving diagnosis, risk mitigation, and dementia prevention [95]. With regard to prevention strategies, one ongoing study is specifically investigating the impact of a year-long physical exercise and education programme on preventing neurocognitive decline in Aboriginal patients aged 45–90 [100]. Thirdly, the NHMRC has called for the development of programmes that improve access to care, including establishing protocols and guidelines to streamline the care process [95]. Furthermore, they emphasise the importance of a culturally informed workforce, as well as advocating for increased recruitment and training of Aboriginal and Torres Strait Islander staff across all aspects of the aged care sector [95]. Finally, the roadmap underscores the significance of end-of-life care, calling for evidence-based approaches to support patients with dementia in their final stages of life and conducting health economics studies to assess the costs and benefits of providing end-of-life care on Country [95]. By addressing these key research areas, future initiatives may, in turn, help foster more equitable, effective, and culturally responsive dementia care for Aboriginal and Torres Strait Islander people (Table 2).

4. Discussion

This review highlights the disproportionate burden of dementia among First Nations Australians and underscores the complex interplay of modifiable risk factors, social determinants, and systemic inequities that shape dementia outcomes. Consistent with previous literature, factors such as hypertension, physical inactivity, smoking, hearing and vision loss, and suboptimal chronic disease management contribute to elevated dementia risk in Indigenous populations. However, existing research often overlooks the importance of embedding interventions within frameworks of cultural safety, Indigenous health governance, and health equity, limiting the translation of evidence into practice.
Addressing dementia in First Nations communities requires culturally responsive, community-driven approaches that prioritise self-determination and local leadership. Co-designed interventions that integrate Indigenous knowledge systems can enhance acceptability, engagement, and effectiveness, reflecting principles articulated in national Indigenous health policy frameworks. Strengths-based approaches that recognise community resilience and individual capabilities shift the focus from deficits to assets, supporting holistic well-being across physical, cognitive, and emotional domains. For example, culturally validated cognitive assessment tools, such as the Canadian First Nations Cognitive Assessment, demonstrate the potential for contextually relevant diagnostics; however, further validation across diverse communities is necessary.
Policy and practice must also address broader social determinants of health. Limited access to healthcare, educational disparities, and historical and ongoing impacts of colonisation exacerbate dementia risk and restrict opportunities for early intervention. Integrating education and awareness programmes across schools, community centres, and healthcare services can improve health literacy, reduce stigma, and promote lifestyle-based risk reduction. Embedding these initiatives within existing policy frameworks enhances sustainability and aligns with preventive health strategies that prioritise equity.
Multidisciplinary and multimodal approaches are critical. Interventions that combine clinical management, lifestyle modification, and community engagement are likely to produce more meaningful outcomes than single-domain programmes. Addressing vascular risk factors, hearing and vision impairments, nutrition, and psychosocial well-being within culturally tailored, community-led programmes supports early intervention and has the potential to delay dementia onset. Moreover, longitudinal and implementation research is required to evaluate the effectiveness of these interventions, ensuring they are scalable, culturally appropriate, and socially just.
Incorporating theoretical perspectives on cultural safety and health equity provides a framework for understanding how systemic inequities and historical factors influence the risk of dementia and the care experiences of individuals. Indigenous governance principles guide the design and delivery of interventions, ensuring community agency and leadership in health decision-making. Together, these frameworks can inform policy, clinical practice, and research, promoting transformative, sustainable approaches to dementia care that extend beyond descriptive studies to actionable, culturally grounded solutions.

5. Conclusions and Future Direction

As Australia’s population ages, dementia prevalence is expected to rise, with First Nations communities facing unique challenges and disparities in care. This review highlights the urgent need for culturally sensitive, community-driven approaches that enhance clinical assessments, improve diagnostic pathways, and leverage digital health solutions to provide individualised care across diverse settings. Interventions should be co-designed with communities, embedding First Nations knowledge systems and prioritising cultural relevance while addressing the variability across First Nations populations. Multidisciplinary care that integrates management of coexisting chronic conditions, alongside programmes that focus on modifiable risk factors, is essential to promote effective and sustainable dementia care (Figure 5).
Future efforts must strengthen healthcare capacity through culturally safe frameworks, workforce training, and collaborative care models while emphasising preventive, strengths-based strategies that build resilience at individual and community levels. Embedding longitudinal and implementation research into these interventions will ensure they are effective, scalable, and responsive to community needs, ultimately guiding policy development and advancing equity in dementia care. By prioritising these strategies, it is possible to reduce health disparities, improve outcomes, and generate valuable insights for First Nations health systems globally.

Author Contributions

I.O.A. and D.S. conceptualised this study. I.O.A., S.M., M.A. (Matthew Ameh), M.A. (Matthew Abunyewah), C.C., A.A. and D.S. wrote the first draft. All authors (I.O.A., S.M., M.A. (Matthew Ameh), C.C., A.A., M.A. (Matthew Abunyewah) and D.S.) were involved in draft revisions and approved the final draft for submission. All authors have read and agreed to the published version of the manuscript.

Funding

This research received no external funding.

Data Availability Statement

No new data were created or analysed in this study.

Conflicts of Interest

The authors declare no conflicts of interest.

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Figure 1. Map visualisation of the association between the keyword combinations utilised in the search. Coloured lines indicate co-occurrence relationships between keyword pairs, with the thickness reflecting the strength of association; thicker lines indicate more frequent co-occurrence across the literature.
Figure 1. Map visualisation of the association between the keyword combinations utilised in the search. Coloured lines indicate co-occurrence relationships between keyword pairs, with the thickness reflecting the strength of association; thicker lines indicate more frequent co-occurrence across the literature.
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Figure 2. Illustration of search methodology and literature screening for the included articles. Arrows indicate the sequential progression of study selection.
Figure 2. Illustration of search methodology and literature screening for the included articles. Arrows indicate the sequential progression of study selection.
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Figure 3. Network Map visualisation of the potential socio-economic implications of dementia burden among First Nations peoples. Coloured lines represent co-occurrence relationships between socio-economic impacts and effects on individuals and families, with line thickness indicating the strength of association; thicker lines denote more frequent co-occurrence across the literature.
Figure 3. Network Map visualisation of the potential socio-economic implications of dementia burden among First Nations peoples. Coloured lines represent co-occurrence relationships between socio-economic impacts and effects on individuals and families, with line thickness indicating the strength of association; thicker lines denote more frequent co-occurrence across the literature.
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Figure 4. Illustration of the associated risk factors of dementia among First Nation Australians.
Figure 4. Illustration of the associated risk factors of dementia among First Nation Australians.
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Figure 5. Summary of the determinants and strategies for culturally responsive dementia management.
Figure 5. Summary of the determinants and strategies for culturally responsive dementia management.
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Table 1. Summary of the intervention studies aimed at improving dementia detection and management among First Nations People. ACCHO(s) refers to Aboriginal Community Controlled Health Organisation(s); AICCHOS to Aboriginal and Islander Community Controlled Health Organisation(s); APAR to Aboriginal Participatory Action Research; ATSI to Aboriginal and Torres Strait Islander; CIND to Cognitive Impairment, No Dementia; CNS to Central Nervous System; ECHO to Extension for Community Healthcare Outcomes; IHW(s) to Indigenous Health Worker(s); iPARIHS to the Integrated Promoting Action on Research Implementation in Health Services framework; KICA to the Kimberley Indigenous Cognitive Assessment; LPS to lipopolysaccharide.
Table 1. Summary of the intervention studies aimed at improving dementia detection and management among First Nations People. ACCHO(s) refers to Aboriginal Community Controlled Health Organisation(s); AICCHOS to Aboriginal and Islander Community Controlled Health Organisation(s); APAR to Aboriginal Participatory Action Research; ATSI to Aboriginal and Torres Strait Islander; CIND to Cognitive Impairment, No Dementia; CNS to Central Nervous System; ECHO to Extension for Community Healthcare Outcomes; IHW(s) to Indigenous Health Worker(s); iPARIHS to the Integrated Promoting Action on Research Implementation in Health Services framework; KICA to the Kimberley Indigenous Cognitive Assessment; LPS to lipopolysaccharide.
ApproachAim(s)TargetImplementation MethodEvidence
Based
Cultural ConsiderationsOutcome(s)Reference(s)
EducationTo improve workforce capacity and access to specialist care in rural and remote settingsPrimary health professionals in First Nations community settings, within QLDMonthly videoconferencing sessions (ECHO), involving lectures and case discussionsECHO 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
-
Improve detection and management of dementia and cognitive impairment in ATSI communities
-
Develop a culturally responsive model of care, focusing on early detection and ongoing management of dementia
-
Train healthcare workers to support better dementia care.
-
12 ACCHS across WA, QLD, Vic and NSW.
-
An audit of the health records will be conducted before the implementation of the project to establish pre-trial rates of diagnoses of cognitive impairment.
-
Development of best-practice guidelines that streamline the process of diagnosis to care for dementia patients
-
Education provided to primary health practitioners for detecting dementia
-
Involvement of local community members in improving care delivery
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]
DiagnosisImproved dementia detectionOlder 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 Translation2019 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 AustraliaThe 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]
EducationTo establish a set of dementia education resources to enhance rates of early diagnosis, improve overall care and wellbeing of Indigenous persons with dementiaAboriginal healthcare and aged care workforce, as well as for the patients and their caregiversCurrent 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 projectThe resources that were established from this project can be accessed here:
https://caringforspirit.neura.edu.au/ accessed on 1 March 2025
[94]
EducationTo design and implement an online educational resource for culturally respectful care for Aboriginal and Torres Strait Islander persons with dementiaNon-Indigenous healthcare providersA 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 StraitIHWs (Indigenous Health Workers) were employed to raise dementia awareness, promote routine cognitive assessments, and promote telehealth useUse 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
-
Difficulty noted by IHWs in focusing on dementia care due to competing urgent health priorities
-
Maintained ongoing access to the Geriatrician telehealth service post-completion of the project
[98]
Ongoing Studies/Trials with Unknown Outcomes Related to Dementia in Distinct First Nations Communities
PreventionTo prevent cognitive function decline in Aboriginal personsAboriginal persons (aged 45–90) with normal cognition, across three programme sites in WATwelve months of physical activity sessions and educational yarning sessions regarding dementia and its risk factorsPhysical 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]
CareTo improve the care provided for Aboriginal persons with dementiaAboriginal Australians with dementia and their families in NSWTo 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]
CareTo identify and develop deliverable strategies, programmes and resources for safeguarding against dementia in a Primary Healthcare (PHC) context8 PHCs within QLD, NT, WA and NSW; in urban and regional contexts.This project will be carried out in multiple phases, including:
(1)
Yarning with the community to establish rapport
(2)
Clinical records audit to establish the weaknesses in each PHC site
(3)
Discuss with each PHC stakeholder to establish priorities and tangible action plans to address these issues
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 communityN/A—study protocol only.[103]
EducationTo 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 personsAboriginal community members within Northern Tasmania
-
Caring for Spirit (online dementia training resource) to be completed as a group
-
Post-training yarning session
-
Dementia questionnaire to be completed to establish the level of dementia awareness
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]
PreventionTo 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 AustraliansPrimary health centres to address modifiable dementia risk profiles and develop appropriate interventionsNot specific due to the scope of the studyNot specifiedN/A[105]
Table 2. Recommended strategies for diagnosis and management of dementia among First Nations people.
Table 2. Recommended strategies for diagnosis and management of dementia among First Nations people.
StrategyRecommendationBasis of RecommendationReference
Care, InterventionHealthcare 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 engagementGuideline 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 managementOptimise 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]
CareEnablers 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
-
Encourage the use of routine health assessments (Item 715)
-
Strengthen relationships between the community and family
-
Utilise multidisciplinary and holistic care models
-
Create visual resources to assist and improve dementia awareness within the community
-
Improve access to specialist care (e.g., geriatricians)
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
-
Encourage community-driven and culturally appropriate models of care
-
Address socioeconomic issues that pervade remote communities
-
Address service and accessibility issues in specialist care and aged care
-
Train, develop and maintain a local Indigenous workforce
Interviews were conducted with Aboriginal informal caregivers of dementia patients, community care workers and service providers in Kimberley, WA.[82]
Care
-
To enhance and promote the use of Telehealth services
-
To encourage the utilisation of Social Emotional Wellbeing Programmes to improve community cohesion and reduce social isolation for patients with dementia and their families
-
Recognise that Aboriginal patients prefer holistic, conservative care and management of their condition rather than pure medical intervention
-
Enhance training and learning opportunities for staff and primary healthcare providers
-
Address competing pressing social and health issues within the community
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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MDPI and ACS Style

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

AMA Style

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 Style

Akefe, 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 Style

Akefe, 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

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