The design and implementation of culturally-safe dementia risk reduction strategies for immigrant women: a theoretical review

Abstract

Background

Raising awareness about dementia risk reduction is particularly important for ethno-culturally diverse or immigrant women, who have greater risk of dementia compared with men due to multiple interacting factors. We aimed to synthesize prior research on culturally-safe strategies to raise diverse women’s awareness of dementia risk reduction.

Methods

We conducted a theoretical review. We searched for studies published up to April 2023 included in a prior review and multiple databases. We screened studies and extracted data in triplicate, informed by existing and compiled theoretical frameworks (WIDER, RE-AIM, cultural safety approaches) and used summary statistics, tables and text to report study characteristics, and strategy design, cultural tailoring, implementation and impact.

Results

We included 17 studies published from 2006 to 2021. Most were conducted in the United States (15, 88%), before-after cohorts (7, 41%), and included African, Caribbean or Latin Americans (82%). No studies focused solely on women (median women 72%, range 50% to 95%). All strategies consisted of in-person didactic lectures, supplemented with interactive discussion, role-playing, videos and/or reinforcing material. Strategies varied widely in terms of format, delivery, personnel, and length, frequency and duration. Details about tailoring for cultural safety were brief and varied across studies. Ten approaches were used to tailor strategies, most often, use of target participants’ first language. Assessment of implementation was limited to reach and effectiveness, offering little insight on how to promote adoption, fidelity of implementation and longer-term maintenance of strategies. Strategies increased knowledge of dementia and decreased misconceptions, but did not prompt participants to seek dementia screening in the single study that assessed behaviour.

Conclusions

While this review revealed a paucity of research, it offers insight on how to design culturally-safe dementia risk reduction strategies that may be suitable for ethno-culturally diverse or immigrant women. Healthcare professionals can use these findings to inform policy, clinical guidelines and public health programs. Future research is needed to establish the ideal number, length and duration of sessions, and confirm strategy effectiveness for diverse women.

Background

Dementia is the second largest cause of disability for older persons and the seventh leading cause of death [1]. The World Health Organization estimates that dementia will affect 152 million people worldwide by 2050 [1]. Dementia refers to mild, moderate or severe cognitive impairment that affects memory, cognitive function, behaviour and ability to perform daily activities [1]. Dementia has profound health and socioeconomic consequences. People with dementia have complex psychological, social and biomedical needs, which largely fall on family caregivers, negatively impacting caregiver employment, health and well-being [2].

Dementia is not a normal part of ageing, therefore it is important to prevent or delay dementia by reducing modifiable risk factors such as physical inactivity, hypertension, obesity, diabetes, depression, and substance use, among others [review dementia strategies, 2].

There is a recognized need to raise awareness about dementia prevention among disadvantaged, hard-to-reach groups [3]. Immigrants commonly have high rates of the aforementioned dementia risk factors [4]. Also, many immigrants possess ethno-cultural misperceptions about the cause and prevention of dementia, which, in combination with perceived stigma, and mistrust of mainstream healthcare providers, prevents or delays help-seeking [5,6,7]. A systematic review and meta-synthesis of 18 studies published from 2000 to 2021 revealed that a lack of culturally-appropriate dementia services can impede access to dementia care among immigrants [8]. Research in Sweden [9], Australia, United States, United Kingdom and elsewhere reported additional challenges to dementia risk reduction or help-seeking among immigrants including language barriers, economic constraints and low acculturation to their new country [10,11,12,13,14,15].

Dementia disproportionately affects women. Nearly two-thirds of persons aged 65 + with dementia are women, an escalating reality as older persons are increasingly women [16]. This is particularly true of ethno-culturally diverse women who may be immigrants, and have higher rates of dementia risk factors (e.g. obesity), and lower rates of behaviours that reduce risk (e.g. physical activity) compared with immigrant men and non-immigrants [17]. Research shows that determinants include gender roles and norms (sacrifice self-care for family obligations), culture (lack health knowledge) and socioeconomic (low-paying/multiple jobs leave little time for self-care) factors plus avoidance of help-seeking due to poor healthcare experiences [17, 18].

Knowledge is needed of strategies that can promote awareness among diverse women of how to reduce dementia risk. Analysis of dementia strategies in 30 other countries found they did not address how to overcome gender, cultural or other socio-economic barriers to dementia awareness and help-seeking [19, 20]. A review by Sagbakken of 264 studies involving European immigrants published up to 2016 found that plain language educational materials, videos, ethnic-minority mass media (radio, television, newspapers) and community-based seminars raised immigrant awareness about dementia [21]. However, the Sagbakken review did not identify which strategies targeted ethno-culturally diverse or immigrant women, or strategy design and implementation to optimize use and impact. The overall aim of this study was to generate insight on culturally-safe strategies that can increase diverse women’s dementia risk reduction knowledge and behaviour. The specific objective was to review published research and describe the design, cultural tailoring, implementation and impact of strategies used to promote dementia risk reduction to ethno-culturally diverse women.

Methods

Approach

We conducted a theoretical review to synthesize and analyze the available literature on strategies promoting dementia risk reduction among immigrant women [22]. This type of review can transform research into higher-level knowledge by mapping the findings to, or generating taxonomies or frameworks; is more exploratory than realist reviews, and more targeted than scoping reviews; thus, more suitable for describing the design and implementation of health promotion interventions [22]. Theoretical reviews are similar in steps and rigour to other types of syntheses but do not require critical appraisal of included studies [22]. We complied with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses [23]. To further enhance rigour, we engaged the interdisciplinary research team in conceptualization, study design, eligibility criteria, review and interpretation of data, and report preparation. The research team included five immigrant women advisors, a neurologist whose research addresses equity and women’s health, three health services researchers with expertise in immigrant women’s health; and six collaborators representing community agencies that offer health promotion to immigrant women, knowledge mobilizing organizations focused on brain health, and an academic-healthcare provider network focused on improving dementia care. We did not require research ethics board approval as data were publicly available and we did not register a protocol.

Eligibility

Additional File 1 provides detailed eligibility criteria. In brief, we included qualitative, quantitative or multiple-/mixed-methods studies that developed or evaluated strategies to promote dementia risk reduction to immigrant (defined as those with naturalized, landed or permanent residency in a country to which they emigrated from their country of origin) or ethno-culturally diverse women (defined as the descendents of immigrants) in developed countries (to be similar to our Canadian setting). Participants included 50% + women (and reported disaggregated outcomes by sex/gender) aged 18 + of any ethno-cultural group without diagnosed dementia, family members, healthcare professionals or knowledge brokers (e.g. community health workers, pharmacists). We searched for studies published in 2000 or later to include research published after the Sagbakken review [21]. We did not include reviews, but screened the references of reviews on relevant topics and of eligible primary studies.

Searching and screening

We employed a two-pronged approach to identify eligible studies. We screened 246 references published up to and including 2016 synthesized in the Sagbakken review of strategies used to raise European immigrant’s awareness about dementia for studies specific to women [21]. We also searched for eligible studies published in 2017 or later. Additional File 2 shows the strategy that we used to search MEDLINE, EMBASE, CINAHL, Social Work Abstracts, PsychINFO, Cochrane Library, Joanna Briggs Database, CAB Abstracts and AMED in April 2023. The search strategy was an expanded version of that used by Sagbakken [21]. Key search terms reflected the concepts of dementia (dementia or Alzheimer’s disease), the informational intervention (e.g. health education, health promotion, patient education), and immigrants or ethno-culturally diverse people (e.g. emigrants and immigrants, ethnicity, racial groups). We did not search grey literature due to considerable limitations noted by others: few repositories, no standardized methods for searching, resource intensive, low yield and potential high risk of bias in grey literature items [24, 25]. We complied with the Peer Review of Electronic Search Strategy reporting guidelines, which involves consulting a medical librarian for guidance on translation of the research question into Medical Subjects Headings or keywords using Boolean and proximity operators [26]. With training and guidance from ARG (woman, PhD-trained health services researcher), BU (woman, Master level graduate student) and SI (woman, PhD level research associate) screened all titles in duplicate. BU and SI consulted ARG to discuss and resolve discrepancies or uncertainties. They conducted full-text screening concurrent with data extraction. Although the search strategy specifically included search terms for immigrants and ethno-culturally diverse persons, by screening titles and abstracts, and then full-text of potentially-eligible article, we ensured that the participants of included studies were either immigrants or ethno-culturally diverse people, of whom at least 50% were women.

Data extraction and analysis

To pilot test the data extraction process, BU, SI and ARG independently extracted data from the same three studies, and compared and discussed discrepancies to achieve common agreement on how to extract data. Thereafter, BU and SI extracted data in duplicate, and discussed discrepancies or uncertainties with ARG. We extracted data on study characteristics (author, country, year published, objective, research design, participant characteristics). We used the Workgroup for Intervention Development and Evaluation Research criteria to describe strategy design: personnel, content, format, delivery and timing (i.e. length, frequency, duration) [27]. To describe how studies assessed strategy implementation, we used RE-AIM, a widely-used framework that assesses: reach (participants), efficacy (impact), adoption (uptake), implementation (fidelity of strategy) and maintenance (long-term use) [28]. To assess the cultural safety of strategies, in the absence of an existing standardized model or framework, we compiled aspects of cultural safety from prior research involving immigrant women, and looked for these and any other unique forms of cultural tailoring in included studies: language of choice, offered by community agencies and/or lay health workers, acknowledgment or employing ethno-cultural linguistic expressions and behavioural norms, offered solutions to socio-cultural barriers of desired behaviour, established trust, explored underlying beliefs, asked about concerns, employed empathic communication, avoided blame, provided supplementary or reinforcing information, avoided details about intimate body parts, involved women only (if in person), included group activities for social interaction, and included interactivity via discussion and question-asking [29,30,31,32,33,34]. We chose the term cultural safety, defined as “effective care of a person from another culture as determined by that person, where culture includes but is not limited to: age or generation, gender, sexual orientation, occupation, socioeconomic status, ethnic origin, migrant experience, religious/spiritual beliefs or disability,“ because it is a broader conceptualization compared with other terminology such as cultural sensitivity, appropriateness or competence, assumes the perspective of people facing healthcare disparities and power differentials, and prompts healthcare organizations and authorities to be held accountable for providing culturally-safe care as defined by those disadvantated groups [30]. Strategy impact included but was not limited to dementia risk reduction awareness, knowledge, attitudes or behaviour. We used summary statistics, tables and text to report the characteristics of included studies, and strategy design, cultural tailoring, implementation and impact. We could not pool data on strategy impact due to variations in study design, measures of impact and measurement techniques.

Results

Search results

Figure 1 shows the PRISMA diagram. We identified a total of 484 titles: 264 from the Sagbakken review [21], 208 from database searching and 12 from screening of references of eligible articles. After removing duplicates, 472 titles remained. Screening of titles eliminated 431 items that did not meet eligibility criteria, and based on PRISMA and PRESS reporting guidelines, reasons for exclusion are required only at the full-text screening phase [23, 26]. Of the remaining 41 full-text items, we eliminated 24 items for the following reasons: did not develop or evaluate strategies that promote dementia risk reduction to immigrant women (n = 18), study participants had a diagnosis of dementia (n = 5) and did not include 50% + diverse women (n = 1). Ultimately, we included 17 studies in the review [35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51]. Additional File 3 provides detailed data extracted from included articles [35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51].

Fig. 1

PRISMA diagram. Flow chart depicting search results, screening process and ultimate number of articles included in the review

Study characteristics

Table 1 summarizes study characteristics. Studies were published from 2006 to 2021. The majority of studies were based in the United States (15, 88.2%) with one (5.9%) in each of Norway and the United Kingdom. Regarding research design, most studies were before-after cohort (7, 41.2%) studies, while 5 (29.4%) were prospective cohort studies. Five studies did not implement an intervention, but collected qualitative or quantitative data by questionnaire (4, 23.5%), or focus groups and interviews (1, 5.9%) to assess dementia beliefs, knowledge and/or willingness for preventive behaviours. All 12 (70.6%) studies that implemented an intervention assessed satisfaction with content and format, or impact of the intervention on dementia beliefs, knowledge and/or help seeking. No study included women only; other studies included various proportions of women (median 72%, range 50% to 95%) but did not report sub-analyses by sex/gender. All studies involved ethno-culturally diverse persons: 8 (47.0%) Latin American, 6 (35.3%) African or Caribbean American, 5 (29.4%) East Asian and 2 (11.8%) South Asian.

Table 1 Summary of study characteristics

Strategy design

Table 2 summarizes the design of strategies to raise awareness about dementia risk reduction assessed in 12 (70.6%) studies based on the WIDER framework [27]. Content included information about dementia warning signs, prevention, diagnosis, types, stages, symptoms, management, myths and guidance for family of persons with dementia. Personnel included researchers, clinicians (e.g. nurse, psychiatrist) and trained lay leaders (e.g. representatives of the community, church leaders). With respect to format and delivery, all studies involved in-person group sessions of didactic lectures, with some also involving interactive discussion, role-playing and videos. Sessions ranged from 25 min to 4 h offered a single time or on multiple occasions over 3 weeks to 16 months.

Table 2 Design of strategies to raise awareness about dementia risk reduction

Cultural tailoring

Table 3 summarizes how studies addressed cultural safety. Of the 5 (29.4%) studies that explored dementia beliefs or knowledge, 3 addressed cultural safety by recruiting participants in local, familiar community organizations such as places of worship; using participants’ first language or translating instruments to their first language, employing plain language or terms familiar to participants, and providing a small gift to participants in accordance with cultural norms. In studies that evaluated strategies to promote awareness of dementia risk reduction (12, 70.6%), 10 approaches were used to tailor the strategy for cultural safety, although details were generally brief. The most frequently used approaches were use of first language (9, 75.0%), and use of plain language or culturally-familiar terms (5, 41.7%). Other cultural tailoring approaches used in more than one study included held in local, familiar community organizations, presenters of same ethno-cultural group and interactivity used to engage participants.

Table 3 Tailoring of strategies for cultural safety

Implementation

Table 4 summarizes how 12 (70.6%) studies evaluated the implementation of strategies to raise awareness about dementia risk reduction based on the RE-AIM framework [28, 29]. All 12 studies assessed strategy reach by reporting the number, proportion or characteristics of participants. All 12 studies assessed strategy effectiveness by evaluating the impact on participant knowledge of dementia (7, 58.3%), satisfaction with strategy design (4, 33.3%), beliefs about dementia (3, 25.0%) and screening behaviour (1, 8.3%). No studies assessed other implementation domains (adoption, implementation, maintenance).

Table 4 Evaluation of strategy implementation

With respect to actual impact, of the 7 studies that assessed knowledge, 1 study identified topics that scored lower, representing knowledge gaps: association with aging, treatment options, inability to perform familiar tasks, inability to recognize people/places and life expectancy [48]. The remaining 6 studies showed that knowledge increased after exposure to the educational strategy [35, 39,40,41, 44, 51]. Among 4 studies that assessed satisfaction with strategy design, participants appreciated the importance of learning about dementia [41], and preferred in-person learning over other formats (e.g. YouTube videos, radio or television broadcast) [37, 42, 45], particularly women and older persons [45]. Among 3 studies that assessed beliefs, all strategies reduced stigma and dispelled concerns about quality of life [36, 44, 46]. The single study that assessed behaviour reported that only 6 of 50 participants sought referral to a memory clinic for evaluation after exposure to the educational strategy [35].

Discussion

This theoretical review identified few studies, the majority of studies involved Caribbean, African or Latin Americans who may not have been immigrants; and no studies focused only on women or reported sub-analyses of results by sex/gender. While all strategies included in-person didactic lectures, they varied widely in terms of supplemental components (e.g. interactive discussion, role-playing, videos) and other design features (format, delivery, personnel, length, frequency and duration). Details about tailoring for cultural safety were brief and varied across studies. While 10 approaches to tailor strategies emerged, most often this was restricted to use of target participants’ first language. Other approaches included consultation with or involvement of representatives from the same community as target participants, or community-based strategy delivery. Regarding implementation, studies assessed reach and effectiveness, offering little insight on how to promote adoption, fidelity of implementation and longer-term maintenance of strategies. Although evidence was sparse, the strategies evaluated by included studies decreased dementia misconceptions and increased dementia knowledge, signaling the potential value of culturally safe strategies to raise awareness about dementia risk reduction for ethno-culturally diverse women.

The bulk of research on dementia risk reduction has focused on identifying risk factors for dementia. For example, meta-analyses by the Lancet Commission identified 12 risk factors: less education, hypertension, hearing impairment, smoking, excessive alcohol consumption, obesity, depression, physical inactivity, diabetes, low social contact, traumatic brain injury and air pollution [52]. The same report noted that many risk factors cluster around inequalities, particularly in Black, Asian, and minority ethnic groups and the importance of addressing these inequalities, but did not offer evidence-based guidance on how to do so [52]. Trials have focused on multi-domain interventions to modify vascular and lifestyle risk factors. For example, the FINGER trial found that diet, exercise, cognitive training, vascular risk monitoring resulted in improved or maintained cognitive function among the test group compared with controls but did not report sub-analyses by gender or ethno-cultural group, and did not assess how to widely scale up this intervention [53]. This work led to World-Wide FINGERS, a global network for dementia prevention trials, which aims to culturally-adapt FINGER-like interventions, but this appears to be based on the conduct of trials in 40 different countries, some of which focus on the elderly and some on rural communities, but none focus on ethno-culturally diverse women [54]. A 2022 review by Huggins et al. included 25 studies published from 2015 to 2020 that evaluated educational interventions to promote dementia knowledge among racial/ethnic minority groups [55]. Similar to our review, most studies in the Huggins review were conducted in the United States and included ethno-cultural groups common in the United States whose immigrant status was unclear [55]. In contrast to our research, the Huggins review included studies published from 2015 to 2022 (five-year time span compared with our review of studies published from 2006 to 2021) did not identify if any studies focused solely on women or report the proportion of women; nor did it analyze the findings using theoretical frameworks to generate insight on how to improve future interventions and research. Content analysis of 18 clinical guidelines for primary care practitioners on dementia risk reduction found that guidelines varied in advice offered, advice was brief, and focused on identifying patients with risk factors and asking them to discuss dementia risk reduction [56]. However, no guidelines acknowledged populations at higher risk or offered strategies to tailor counseling or other interventions for those groups aimed at raising awareness about dementia risk reduction, nor did the authors identify this as a limitation [56]. This study is unique because it identified, described and assessed the implementation and impact of culturally tailored strategies to raise awareness about dementia risk reduction specifically among high-risk diverse women by employing three theoretical frameworks, and searching for and including studies published over a greater time span compared with prior research..

The findings raise several implications for policy, practice and research. With respect to policy, healthcare systems and professional societies could bring attention to the need for dementia risk reduction strategies targeting at-risk groups such as ethno-culturally diverse women by acknowledging such inequities in policies that inform public health programs and in clinical practice guidelines that assist generalist and specialist clinicians to provide person-centred, culturally-safe prevention counseling. Given prior research showing that national policies and guidelines did not acknowledge or suggest actions for targeting diverse persons at higher risk of dementia [19, 20, 56], such high-level incentives are needed.

Regarding practice, this research provides some insight on how to design dementia risk reduction to target high-risk groups such as ethno-culturally diverse women. The strategies employed in included studies appeared to be effective because they increased dementia knowledge, and reduced misconceptions and stigma associated with dementia. Design elements common to strategies that could be emulated in future programs included format and cultural tailoring. All interventions were based on in-person meetings involving didactic lecture, and some also included interactive discussion, videos and take-home or follow-up material. Furthermore, in studies that compared different delivery options, participants preferred in-person delivery over YouTube videos or cultural media broadcasts (television, radio). Cultural tailoring included use of the participants’ first language, consultation with or involvement of representatives from the same community as target participants, and holding in-person sessions in community organizations familiar to the participants. Prior research on health promotion for immigrant women in non-dementia contexts confirms the importance of these approaches for achieving cultural safety [29,30,31,32,33,34]. While only one study assessed dementia risk reduction behaviour, and found that in-person dementia risk reduction education did not prompt participants to seek dementia screening [35], other research offers some insight on how to design strategies that lead to behaviour change such as help-seeking or adopting healthy lifestyles. For example, a review of 50 qualitative studies published since 1995 yielded insight on the perspectives of 4500 + non-expert dementia-free members of the general public on strategies needed to reduce dementia risk [57]. Overall, the review found that education is key, but content, format and delivery need to be tailored based on co-design with representatives of target communities; and complementary interventions to support self-regulation mechanisms and social processes may increase education effectiveness [57].

This study offers insight on issues that warrant future research. Despite the disproportionate prevalence and risk of dementia among ethno-culturally diverse women, the paucity of research identified in this review shows that science has not progressed beyond Sagbakken’s review published in 2017 [21]. While it appears that in-person education was preferred by participants and effective at improving dementia knowledge, other aspects of strategy design remain unclear. Future, more robust trials are needed to assess the ideal number, length and duration of sessions to optimize participation and impact. The need for multiple or multi-faceted interventions remains a debate in the implementation science literature [58]. Furthermore, such trials should target women only or report sub-analyses by gender and ethno-cultural group. Only once sufficient evidence is generated to identify the ideal strategy design can other aspects of implementation such as adoption, fidelity and maintenance be addressed. Research on these issues is advocated in the recent World Health Organization guideline on dementia risk reduction, which recommends: “Investigate the effect of genetic risk, sex, and ethnic differences in modifying the response to preventive interventions” [59].

This study featured several strengths. We employed rigorous review methods and complied with review reporting criteria [22, 23]. By employing a theoretical review approach [22], we extracted and mapped data to existing and compiled theoretical frameworks [27,28,29,30,31,32,33,34], which assisted in organizing, interpreting and reporting the findings. An interdisciplinary research team that included ethno-culturally diverse women guided all aspects of the study. Some limitations must be mentioned. As with any review, the search strategy may not have identified all relevant literature, our eligibility criteria may have eliminated potentially relevant studies, and inclusion of only English-language studies may have further limited the number of included studies. As noted earlier, the paucity of research on this topic, and variability in study designs and measures, offers little evidence to inform the future design and implementation of strategies to promote awareness of dementia risk reduction despite searching for all research published before April 2023. In particular, the findings may not be relevant to women, immigrants, or ethno-culturally diverse communities other than African, Caribbean or Latin Americans, or in countries other than the United States. However, reviews are important starting points in any research trajectory, and the identification of knowledge gaps offers explicit insight on topics that warrant ongoing research.

Conclusions

While no studies focused solely on women, this review of 17 studies published from 2006 to 2021 offered insight on how to design culturally safe dementia risk reduction strategies that may be suitable for ethno-culturally diverse or immigrant women who are at high risk of dementia due to multiple sex, gender and socio-economic factors. With respect to design, strategies should include in-person meetings involving didactic lecture, and interactive discussion, videos, and take-home or follow-up material to reinforce learning. Use of the participants’ first language, consultation with or involvement of representatives from the same community as target participants, and holding in-person sessions in community organizations familiar to the participants can tailor strategies for cultural safety. Strategies designed in this way may improve dementia knowledge and reduce dementia-related misconceptions and stigma. This study is unique to prior research that largely focused on identifying risk factors for dementia. Health care professionals can use these findings to inform policy, clinical guidelines and public health programs. Future research is needed to establish the ideal number of number, length and duration of sessions, and confirm strategy effectiveness for diverse women.