The Relationship Between Culture and the Modifiable Risk Factors of Dementia Among Indigenous Peoples in Canada,the USA,Australia,and New Zealand: A Scoping Review Protocol

Abstract

Background: Compared to non-Indigenous peoples, the prevalence of dementia is higher among Indigenous Peoples in Canada, the United States, New Zealand, and Australia, and poses significant challenges to individual, family, and community health and well-being. Connection to culture, a social determinant of health for Indigenous Peoples, may influence the prevalence and incidence of modifiable risk factors for dementia (e.g., excessive alcohol use and diabetes). However, no existing scoping reviews have summarized the available literature regarding connection to culture and modifiable risk factors for dementia among Indigenous Peoples in Canada, the United States, New Zealand, and Australia. We will conduct a scoping review to identify, summarize, and evaluate the literature in this area, while also highlighting gender-based differences. Methods: We will use the 2020 Joanna Briggs Institute methodology for scoping reviews. We will systematically search PsychInfo, Web of Science, PubMed, ERIC, CINAHL, and gray literature databases to identify relevant qualitative and quantitative studies. Four reviewers will assess titles, abstracts, and full-text articles for inclusion. We will chart and synthesize extracted data to summarize the influence of connection to culture on modifiable risk factors of dementia and assess whether gender impacts this relationship. We will also evaluate the methodological quality of published literature using the Consolidated Criteria for Strengthening Reporting of Health Research involving Indigenous peoples. Reporting will follow the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews guidelines. Discussion: This review will synthesize and provide important insight into the relationship between connection to Indigenous culture and modifiable risk factors for dementia. Findings may help to inform Indigenous health promotion initiatives, policy, future research, and clinical practice. Scoping Review Registration: Open Science Framework (https://osf.io/3ykdr).

Keywords

scoping review Indigenous culture dementia modifiable risk factors

Background

Dementia is a clinical syndrome characterized by a progressive decline in cognitive abilities (e.g., memory loss) and abilities to engage in activities of daily life, and the presence of neuropsychiatric symptoms (e.g., depression) (e.g., (Grand et al., 2011)). Dementia may be caused by several types of neuropathology, however, it is most commonly associated with Alzheimer’s Disease and vascular disease (e.g., stroke) (Grand et al., 2011). Globally, dementia is the seventh leading cause of death and a major cause of disability and dependency among older adults (e.g., (World Health Organization, 2023)). The number of people living with dementia worldwide is estimated to triple from 50 million in 2020 to 152 million in 2050, driven primarily by population growth and aging (e.g., (Livingston et al., 2020)). The incidence of dementia is increasing more steadily among some Indigenous populations globally when compared to non-Indigenous peoples (Warren et al., 2015). For instance, research suggests that the prevalence of dementia will increase by 273% for Indigenous Peoples in Canada in 2050, compared to a 187% increase among non-Indigenous peoples (Alzheimer’s Society of Canada, 2024). This disproportionate increase has been theorized to be related to a growing number of older Indigenous Peoples (e.g., longer life expectancy), and broader social factors, such as colonization (Alzheimer’s Society of Canada, 2024). The current and projected number of Indigenous Peoples living with dementia necessitates approaches to reduce risk.

Indigenous Peoples in Canada, United States, New Zealand, and Australia

The United Nations (United Nations, 2024) identifies Indigenous Peoples as self-identified persons with a historical continuity with a given region prior to colonization and the arrival of settler societies, with a continued strong link to their lands/territories who maintain distinct social, economic, and political systems, languages, cultures, beliefs, and knowledge systems from the dominant society. Globally, there are approximately 370 million Indigenous Peoples across 70 countries, representing 5% of the global population (United Nations, 2024). Indigenous communities have considerable diversity in beliefs, values, practices, and traditions. However, several Indigenous populations, including Indigenous Peoples in Canada, the United States, Australia, and New Zealand, share a common experience of colonization, resulting in a loss of culture (e.g., cultural practices and connection to community) and changes to land-based relationships and stewardship, among other manifestations (e.g., (Warren et al., 2015)).

First Nations, Métis, and Inuit (FNMI) are the Indigenous nations in Canada recognized by the federal government. FNMI peoples comprise 5% of the Canadian population, with First Nations having the largest population (Statistics Canada, 2022). First Nations peoples may be at a higher risk for dementia than Métis and Inuit (Jacklin et al., 2012; Public Health Agency of Canada, 2021). In the United States, federally recognized Indigenous Peoples include American Indians, registered to tribal nations within the continental United States, and Alaska Natives, tribal nations and villages in Alaska, which make up approximately 1.9% of the United States population (United States Census Bureau, 2023). The age-adjusted prevalence of dementia is higher among American Indians than the general population (e.g., (Moon et al., 2023; Nguyen et al., 2024)). While other Indigenous nations in the United States, including Native Hawaiians, Chamorros, and American Samoans, are not federally recognized (Bureau of Indian Affairs, 2021), the prevalence and risk of dementia may also be higher among these communities when compared to non-Indigenous peoples (Mehta & Yeo, 2017; Smith et al., 2021).

The Indigenous population in Australia is primarily made up of two distinct cultural groups, Aboriginal and Torres Strait Pacific Islander peoples. In 2021, Aboriginal and Torres Strait Pacific Islanders comprised 3.2% of the Australian population and are predominantly Aboriginal (Australian Bureau of Statistics, 2022). The number of Aboriginal and Torres Strait Pacific Islanders aged 75 years and older is increasing, which may pose an increased risk of dementia cases in these Nations (Australian Bureau of Statistics, 2022). Indeed, the rates of dementia among Aboriginal and Torres Strait Pacific Islanders in Australia are estimated to be three to five times greater when compared to the general Australian population (Nguyen et al., 2024). Māori are the recognized Indigenous Peoples in New Zealand and comprise 17.3% of the New Zealand population (Stats NZ, 2023). Similar to other Indigenous Nations, the prevalence of dementia may be higher among Māori (Cheung et al., 2022). Given the high prevalence of dementia within Indigenous populations in these countries, it is critical to examine strategies to reduce risk.

Modifiable and Non-modifiable Risk Factors of Dementia

Dementia is associated with non-modifiable (e.g., genetics, sex, and age) and modifiable risk factors. These modifiable risk factors include, but are not limited to, low education, hearing loss, traumatic brain injury, hypertension, excessive alcohol consumption, obesity, smoking, depression, social isolation, physical inactivity, air pollution, and diabetes (Livingston et al., 2020). Previous research suggests that up to 40% of dementia cases can be prevented or delayed by reducing the presence of such modifiable risk factors (Livingston et al., 2020). In Canada, the incidence of dementia among some Indigenous peoples is primarily driven by similar modifiable risk factors (e.g., (MacDonald et al., 2015)). Modifiable risk factors are thus a primary target for risk reduction strategies (e.g., (Ngandu et al., 2015)). While interventions are being developed globally that address modifiable risk factors to reduce dementia risk, Indigenous and non-Indigenous researchers in Canada emphasize the need for culturally relevant approaches (Furlano & Walker, 2023).

Social Determinants of Health

Social determinants of health describe the conditions in which people live and work that influence health (Loppie & Wien, 2013). Several additional social determinants of health have been identified for Indigenous Peoples in Canada, such as colonization (e.g., colonial governance and Residential Schools), community infrastructure, resources and capacities, the education system, health activities, self-determination (e.g., authority over natural resources) and food insecurity (Loppie & Wien, 2013). Similar social determinants of health have been identified for Indigenous Peoples globally (e.g., racism and other colonial ideologies) (United Nations Economic and Social Council, 2023), and have been linked to the modifiable risk factors of dementia (e.g., (Henderson et al., 2024)). It is plausible that these social determinants of health are critically linked to many of the modifiable risk factors of dementia.

Culture encompasses all the aspects of a way of life that are passed down socially, including values, knowledge, behaviors, and practices (Kirmayer et al., 2021). Culture (e.g., language, sacred practices, land-based practices, connection to community, and spirituality) is an international Indigenous social determinant of health (United Nations Economic and Social Council, 2023). Cultural resurgence speaks to the reclamation and re-engagement of Indigenous languages, traditions, values, relationships, governance, and relationships to lands and waters (e.g., (Loppie & Wien, 2013)). In a landmark study, cultural continuity was associated with an absence or reduced rates of suicide among many First Nations communities in Canada (Chandler & Lalonde, 1998). Connection to culture has also been associated with a lower prevalence of health conditions among Indigenous Peoples in Canada, the United States, Australia, and New Zealand (e.g., (Bourke et al., 2018)). Accordingly, it is plausible that connection to culture may help to reduce the prevalence of modifiable risk factors of dementia among Indigenous Peoples. Indeed, recent research suggests that connection to culture may be a protective factor for dementia for global Indigenous Peoples (Nguyen et al., 2024). However, as of November 2023, no reviews summarize this information for Indigenous Peoples in Canada, the United States, Australia, and New Zealand.

Sex and Gender Considerations

Dementia is typically more common among females among the general population (Alzheimer’s Society of Canada, 2024). Sex-based differences in dementia prevalence may be due to differences in life expectancy, genetic risk factors, hormones, cumulative androgen deprivation therapy (e.g., for use during prostate cancer), and differences in the prevalence of modifiable risk factors, such as cardiovascular risk factors (Alzheimer’s Society of Canada, 2024). In contrast, dementia is more prevalent among males within some Indigenous populations, such as Canada and Australia (Walker et al., 2020), but not others (e.g., (Nguyen et al., 2024)). Sex and gender may also influence the strength and characteristics of the association between connection to culture (e.g., engagement in cultural practices) and modifiable risk factors for dementia. For instance, Indigenous women in the United States report higher levels of enculturation, and acculturation is associated with alcohol and drug use in response to stress among males (Burnette et al., 2020).

Gender also plays a role in understanding the risk for dementia. For instance, certain modifiable risk factors, such as low education, may impact women more heavily, given historical and present inequalities in access to education (Alzheimer’s Society of Canada, 2024). Transgender and non-binary adults may be at a higher late-life risk for dementia when compared to cis-gendered adults, potentially due to higher stigma and discrimination (Brady et al., 2024). The experiences of dementia among transgender, non-binary, and Two-Spirit Indigenous Peoples may be markedly different than cis-gendered individuals (Adan et al., 2021).

While a sex and gender analysis may be useful to understand the risk of dementia, as of November 2023, no reviews have examined the association between connection to culture and the modifiable risk factors using a sex and gender analysis among Indigenous populations in Canada, the United States, Australia, and New Zealand. If certain cultural practices are more strongly associated with modifiable dementia risk factors, such as physical activity, depending on sex and gender, this would have important implications for informing prevention efforts.

The Current Study

Despite evidence suggesting a key role in connection to culture (e.g., cultural practices and connection to community) and the modifiable risk factors for dementia, as of November 2023, there are no existing reviews that summarize the literature on connection to culture and the major modifiable risk factors of dementia for Indigenous Peoples, nor are there any reviews that evaluate differences in the characteristics and strength of this relationship based on sex and gender. Further, there is a lack of research that summarizes how sex and gender have been characterized within this literature (e.g., terminology used when describing sex). A scoping review of the literature that examines the connection to culture and the modifiable risk factors of dementia, using a sex and gender analysis, may help inform dementia prevention and health promotion initiatives within Indigenous communities and inform local government public policy.

Research with Indigenous communities has a history of exploitation and the production of research that has not been respectful and relevant to participating communities (Huria et al., 2019; Smith, 1999). Among other efforts to rectify these past and in some cases, ongoing injustices, reporting guidelines may help to improve the quality of research and health outcomes for Indigenous communities (Huria et al., 2019). The consolidated criteria for strengthening the reporting of health research involving Indigenous Peoples (CONSIDER) statement was created to improve research practices, research conduct, and dissemination to improve health equity for Indigenous Peoples (Huria et al., 2019). Utilizing the CONSIDER statement when evaluating Indigenous research may help to inform the quality of the research from an Indigenous perspective.

Review Objectives

The objective of this scoping review is to identify and synthesize the available literature on the relationship between connection to culture and the incidence of modifiable risk factors for dementia among Indigenous Peoples in Canada, the United States, Australia, and New Zealand. We aim to:

● Identify the available research on the association between connection to culture (e.g., cultural practices and connection to community) and the modifiable risk factors of physical activity, education, alcohol, smoking, obesity, type 2 diabetes, and hypertension among FNMI, American Indians, Alaska Natives, Native Hawaiians, Chamorros, and American Samoans, Aboriginal and Torres Strait Pacific Islanders, and Māori.

● Examine how research in this area reports sex and gender, and how the association of connection to culture and the modifiable risk factors of dementia is influenced by sex and gender.

● Evaluate the quality of published studies utilizing the CONSIDER statement (Burnette et al., 2020).

Method

The proposed scoping review will follow the 2020 Joanna Briggs Institute (JBI) methodology for scoping reviews (Smith, 1999). The review protocol has been pre-registered on the Open Science Framework database (https://osf.io/3ykdr). The idea of the proposed protocol was conceptualized by the first author (B.S.) while conducting the literature review for her M.A. research, supervised by co-author C.M. The scoping review methodology and search strategy was developed by the lead author with an experienced librarian at Lakehead University in Thunder Bay, Ontario, Canada. The remaining co-authors are involved in reviewing articles, data extraction, summarizing results, and preparing the scoping review manuscript.

Self-location is a critical component of Indigenous research (Kovach, 2009). This review will be conducted by Michi Saagig Nishnaabe (B.S.), Anishinawbe (Ojibway) (C.M.), and non-Indigenous allied health researchers (A.A., I.M., H.S., and E.T.).

Eligibility Criteria

Populations

We will include studies that focus on Indigenous Peoples in Canada (FNMI), the United States (American Indians, Alaska Natives, Native Hawaiians, Chamorros, and American Samoans), Australia (Aboriginal and Torres Strait Pacific Islander), and New Zealand (Māori). While there are many Indigenous nations globally, we have chosen to focus on these nations due to similar experiences of colonization and reported impacts on health (Nguyen et al., 2024). Articles will be included that have individuals from any age, gender, and sex.

Concept

This review will include studies that examine the association between connection to culture and the primary modifiable risk factors of dementia of physical inactivity, low education, excessive alcohol consumption, tobacco smoking, obesity, type 2 diabetes, and hypertension. These modifiable risk factors were selected based on previous research conducted with the global population, and Indigenous Peoples more specifically (Livingston et al., 2020; MacDonald et al., 2015).

Connection to culture is challenging to define across multiple and highly diverse Indigenous nations. Moreover, it is important to respect the contemporary experience of cultural identities and how expressions of culture may differ across and within generations. In this review, we used a broad construct definition of connection to culture in the search strategy. Within the search strategy, connection to culture included any articles that described or explicitly listed a connection to culture, cultural continuity, cultural identity, language, cultural practices, community support, social support, sense of community and community belonging, traditional practices and modern expressions, traditional diets (e.g., wild foods), storytelling, dance (e.g., powwows), Indigenous sports (e.g., lacrosse), weaving, carving, and plant medicines.

Context

The scoping review will include studies from Canada, the United States, Australia, and New Zealand.

Types of Sources

This scoping review will draw on quantitative (e.g., experimental and correlational designs) and qualitative (e.g., interviews and focus groups) peer-reviewed studies, and gray literature (e.g., Indigenous databases and dissertations). For quantitative data, we will accept all types of outcome measures (standardized and unstandardized). Literature reviews (e.g., systematic and scoping reviews), conference abstracts, commentaries, and book chapters will not be utilized. We will conduct a hand-search of all included articles’ reference lists to identify additional relevant articles.

Search Strategy

As recommended by the JBI methodology for scoping reviews (Kovach, 2009), we will use a three-step search strategy. In November 2023, the first author (B.S.) conducted a limited search using PsychInfo and PubMed and examined the text words in the title and abstract, index terms, and keywords of several seed papers relating to Indigenous Peoples, connection to culture, and modifiable risk factors (e.g., type 2 diabetes). Afterwards, the first author (B.S.) devised the list of search terms and reviewed these with the librarian at Lakehead University. Once the search terms were confirmed, a second search was conducted using all key terms, adapted as appropriate for the selected databases (PsychInfo, Web of Science, PubMed, ERIC, CINAHL). See Table 1 for the literature search strategy for PsychInfo. The search was restricted to peer-reviewed articles published in English. For all databases, peer-reviewed studies published in English from the beginning of the database to February 20, 2024 were included. Once the article reviews are completed, we will search the reference list of all included articles to identify additional articles.

Table 1.

PsychInfo Literature Search Strategy.

Concept	Search strategy
Indigenous peoples in Canada, the United States, Australia, and New Zealand	((“First nation” OR “first national” OR “first nationalist” OR “first nationally” OR “first nationals” OR “first nations” OR “first nationwide”) OR Indigenous OR Aboriginal* OR Inuit* OR Inuk OR Metis OR Métis OR (“american indian” OR “american indians”) OR “Native” OR Māori OR “Torres Strait” OR “Hawaiian” OR “pacific islander”))
Connection to culture	((“Culture” OR “cultural continuity” OR “cultural identity” OR “language” OR “social determinants of health” OR “cultural practices” OR “community support” OR “social support” OR “sense of community” OR belonging OR “traditional” OR “culturally appropriate” OR “culturally specific factors” OR “cultural characteristics” OR (“cultural strength”) OR “wild food” OR “gather” OR “harvest” OR “storytelling” OR “pow wow” OR “powwow” OR dance OR lacrosse OR weav* OR carv* OR canoe* OR “plant medicine”))
Modifiable risk factors	((“Diabetes” OR “T2D” OR “exercise” OR “motor activity” OR “physical activity” OR “physical fitness” OR (“physical inactivity”) OR sedentary OR smok* OR “tobacco” OR (“health behavior” OR “health behavioral” OR “health behaviors”) OR obese OR obesity* OR overweight OR “body mass index” OR BMI OR hypertension OR “high blood pressure” OR education OR “academic support” OR university OR “nursing schools” OR “students” OR baccalaureate OR college OR “binge drink” OR “binge drinking” OR “binge drinker” OR “binge drinkers” OR “binge alcohol” OR “alcohol binge” OR “heavy drinking” OR “alcohol use” OR “alcohol abuse” OR “heavy alcohol use” OR “heavy alcohol consumption” OR “alcohol misuse” OR “alcoholism” OR “alcoholic” OR “alcohol drinking” OR “alcohol use disorder”))

Study/Source Evidence Selection

In February 2024, we uploaded all articles to Rayyan software (Rayyan – Intelligent Systematic Review - Rayyan) for eligibility screening and removed duplicates. From February to March 2024, four independent reviewers (B.S., A.A., I.M., H.S.) screened titles for inclusion against the inclusion criteria. A total of 25 articles were initially reviewed to examine inter-rater reliability and the team met to discuss and resolve early issues before the full collection of articles was examined. From July to October 2024, we will examine the abstracts of the included and discrepant articles. Twenty-five articles will be initially reviewed to examine inter-rater reliability and the team will resolve early issues before the full collection of articles is examined. The first author (B.S.) and an additional reviewer (E.T.) will resolve discrepant articles. Third, the first author (B.S.) and an additional reviewer (E.T.) will examine the full text of the articles. A minimum of 10 articles will be initially reviewed to examine inter-rater reliability between these authors and resolve issues. We will record the reasons for excluding full-text articles. An additional reviewer, which is to be confirmed, will resolve discrepancies at this stage. The search results and the study inclusion process will be reported in full in the final scoping review and presented in a Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Review (PRISMA-ScR) (Tricco et al., 2018) flow diagram and checklist.

Data Extraction

The lead author (B.S.) and a second reviewer will extract data from the papers included in the scoping review using Microsoft Excel and a data extraction tool developed by the authors (Table 2). We will extract data that includes details about the participants (e.g., age, sex, gender, Indigenous identity), concept, context, study methods, and key findings related to the review question. Further, we will extract data relevant to the CONSIDER statement, including information about community partnerships, self-location, principles of researcher-community engagement, and research governance (Huria et al., 2019). We will initially review 10 articles before examining extraction alignment (Peters et al., 2020), and will meet to discuss the required changes to the data extraction table if the extraction alignment is poor or if changes are needed for the data extraction table. As data extraction can be an interactive process, we may modify the data extraction tool as we review the data to ensure that we are accurately addressing the research question.

Table 2.

Data Extraction Table.

Study characteristics of Interest
Author and year of publication
Location of authors (including international collaborations)
Funding
Conflicts of interest
Study design
Participant information (age, gender, sex, SES, Indigenous identity)
Sex and gender conceptualization
CONSIDER statement variables
Governance
Prioritization
Relationships
Methodologies
Participation
Capacity
Analysis and interpretation
Dissemination
Conceptualization of culture and measures used
Modifiable risk factors examined
Results relating to culture and modifiable risk factors
Control variables used

Data Analysis and Presentation

We will extract the data to examine and summarize the research on the connection to culture (e.g., cultural practices and connection to community) and modifiable risk factors of dementia (e.g., low education) among Indigenous Peoples in Canada, the United States, Australia, and New Zealand. We will summarize relevant participant demographics (e.g., sex and gender), highlight sex and gender-based differences and conceptualizations, and evaluate the articles using the CONSIDER statement. We will summarize the data using a narrative synthesis, tables, and charts. The results will be reported using PRISMA-ScR (Tricco et al., 2018).

Discussion

Research suggests that connection to culture for Indigenous Peoples may reduce the incidence and prevalence of the modifiable risk factors for dementia (e.g., (Bourke et al., 2018; Nguyen et al., 2024)). To date, a comprehensive review of the literature examining this relationship among Indigenous Peoples has not been conducted. Using a broad construct definition of culture, this scoping review will identify and summarize the published research exploring the relationship between connection to culture and modifiable risk factors for dementia among Indigenous Peoples in Canada, the United States, Australia, and New Zealand. Using the CONSIDER statement, we will evaluate the quality of published literature in this area. Additionally, we will examine how sex and gender-based considerations influence the association between connection to culture and major modifiable risk factors of dementia, and evaluate how sex and gender has been conceptualized in previous research.

The results of this review will provide a nuanced understanding of how Indigenous culture influences the modifiable risk factors for dementia. The review may help to identify specific cultural practices that more greatly influence modifiable risk factors of dementia. The review may also help to identify if the strength and characteristics of the association between connection to culture (e.g., cultural practices) and modifiable risk factors vary as a function of sex and gender. Results may also inform Indigenous health research more broadly by clarifying how culture is operationalized in the current literature.

Findings may inform researchers, clinicians, health promotion initiatives, and public policy on the importance, process, and best practices for developing culturally-relevant dementia prevention programs. Results will also identify essential research gaps and needs, which may help to inform future research. We will disseminate results through a peer-reviewed journal publication, academic conferences, and community-based presentations.

Footnotes

Author Contributions

Author B.S. was responsible for the review conceptualization, development of the methodology, and literature search. Authors B.S., A.A., I.M., and H.S. all contributed equally to reviewing and selecting the included articles for this review. Authors A.A. and I.M. composed the abstract. Author A.A. composed declarations sections and assisted with paper formatting. Authors B.S., I.M., and H.S. helped to compose the discussion section. Author B.S. composed the introduction and methods sections. C.M. and E.T. provided supervision and direction on the conceptualization and methodology. All authors contributed equally to the final editing, review, and approval of the manuscript.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Brittany Skov

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