key: cord-0909333-aq06ir5h
authors: Brijnath, Bianca; Croy, Samantha; Sabates, Julieta; Thodis, Antonia; Ellis, Stephanie; de Crespigny, Fleur; Moxey, Annette; Day, Robert; Dobson, Annette; Elliott, Cerise; Etherington, Cathy; Geronimo, Mary Ann; Hlis, Danijela; Lampit, Amit; Low, Lee‐Fay; Straiton, Nicola; Temple, Jeromey
title: Including ethnic minorities in dementia research: Recommendations from a scoping review
date: 2022-04-29
journal: Alzheimers Dement (N Y)
DOI: 10.1002/trc2.12222
sha: ffd5ee422d34a67ee314de49a5c366fedd1251da
doc_id: 909333
cord_uid: aq06ir5h

INTRODUCTION: Ethnicity influences dementia etiology, prognosis, and treatment, while culture shapes help‐seeking and care. Despite increasing population diversity in high‐income settlement countries, ethnic minorities remain underrepresented in dementia research. We investigated approaches to enhance the recruitment, and consistent collection and analysis of variables relevant to, ethnic minorities in dementia studies to make recommendations for consistent practice in dementia research. METHODS: We did a scoping review, searching Embase, PsycINFO, Medline, CENTRAL, and CINAHL between January 1, 2010 and January 7, 2020. Dementia clinical and cohort studies that actively recruited ethnic minorities in high‐income countries were included. A steering group of experts developed criteria through which high‐quality studies were identified. RESULTS: Sixty‐six articles were retrieved (51 observational; 15 experimental). Use of interpreters and translators (n = 17) was the most common method to facilitate participant recruitment. Race and ethnicity (n = 59) were the most common variables collected, followed by information on native language (n = 14), country of birth (n = 9), and length of time in country of settlement (n = 8). Thirty‐three studies translated or used a culturally validated instrument. Twenty‐three articles conducted subgroup analyses based on ethnicity. Six high‐quality studies facilitated inclusion through community engagement, collected information on multiple aspects of ethnic diversity, and adjusted/substratified to analyze the impact of ethnicity on dementia. DISCUSSION: We make recommendations for consistent recruitment, collection, and reporting of variables relating to ethnic and cultural diversity in dementia research.

included. A steering group of experts developed criteria through which high-quality studies were identified.

Results: Sixty-six articles were retrieved (51 observational; 15 experimental). Use of interpreters and translators (n = 17) was the most common method to facilitate participant recruitment. Race and ethnicity (n = 59) were the most common variables collected, followed by information on native language (n = 14), country of birth (n = 9), and length of time in country of settlement (n = 8). Thirty-three studies translated or used a culturally validated instrument. Twenty-three articles conducted subgroup analyses based on ethnicity. Six high-quality studies facilitated inclusion through community engagement, collected information on multiple aspects of ethnic diversity, and adjusted/substratified to analyze the impact of ethnicity on dementia.

Discussion: We make recommendations for consistent recruitment, collection, and reporting of variables relating to ethnic and cultural diversity in dementia research.

dementia, ethnic minorities, research, underserved

It is now well established that in most high-income countries (HIC; e.g., the United States, UK, and Australia) ethnic-minority communities have different dementia etiologies, prognosis, and treatment; 1 patterns of help-seeking; 2,3 care practices; 4 and experiences of marginalization and systemic racism. 5, 6 Collectively, these factors contribute to ethnic disparities in dementia.

With increasing population diversity and longevity due to migration, advances in public health, and social and economic development, ethnic minorities must have equitable access to health and care across the life course. This includes not only benefiting from the latest advances in dementia research 7, 8 but also ensuring that such scientific advances are derived from the inclusion of diverse communities in research.

Unfortunately, dementia research remains largely void of diversity. 1, 9 A systematic review of 96 randomized controlled trials (RCTs) to improve cognition related to dementia (total of 37,278 participants) found only 39 trials (39.4%) reported ethnicity and only 11 .4% (95% confidence interval [CI], 7.5-15.9%) of all participants were non-White. 10 Underrepresentation of ethnic minorities in research means that clinical and policy decisions are likely to be based on data that reflect the needs of only some groups and not others. The problem has been widely recognized by dementia researchers 1 and is also endemic to medical research. 11 In this article, we refer to ethnic, cultural, and linguistic diversity and have avoided the use of the word "race" in our own analysis. Ethnicity and race are polemic concepts, difficult to define, and often used interchangeably. However, the terms are distinctive; ethnicity refers to a sense of personhood or shared descent based on national origin, cultural background (including language), and/or religious beliefs. 12 Definitions of ethnicity locate it as self-identified, identified by others, and associating specific behaviors with a particular ethnic group. Impor-tantly, ethnicity is not static, but a dialectical concept evolving in relation to migration, kinship patterns, and other social and cultural trends.

All humans have an ethnicity, although those who belong to a majority ethnic group may not see themselves as being "ethnic." 12 Race, on the other hand, is a classification, a signifier, and a synonym. 13 As a classification, biological ideas of race, dominant from the early 19th century, were the basis on which human populations were divided into subcategories mainly based on visible physical characteristics. 14 This concept is widely discredited as the biological basis of race is much more dynamic than such classifications posit. By contrast, race as a signifier refers to the social practices on the basis of physical markings and (falsely) imputed behaviors directed at particular groups, and is closely related to the third concept of race as a synonym for the intersections among identity, history, trauma, and structural racism. 13 Put more simply, "race as biology is fiction, racism as a social problem is real." 15 For this reason, race continues to be considered important in understanding health disparities research as a sociopolitical rather than biological category. 16 Recognizing the different logics underpinning ethnicity and race, some scholars advocate treating them as distinct categories; 17 others do not. 18 Consequently, there is conflation of the two categories in many studies. Therefore, in this scoping review we treat these categories as distinct in our analyses but not when it comes to reporting on studies that treat them similarly. Such an approach has precedent (for example Torres' work 17 ).

To promote the consistent collection of data on ethnic and cultural diversity in dementia, researchers have identified the need for evidence-based strategies to enhance recruitment of ethnic minorities as well as the need for more robust reporting mechanisms for the collection and analysis of data relevant to ethnicity and culture. 1 

Given the exploratory and broad nature of our aims, a scoping review methodology was selected. Systematic reviews are useful for answering well-defined research questions with a narrow, specialized scope, but are less relevant when little is known about a topic and thus a broader search and scoping of literature is initially required. 22, 23 We applied the PCC (population, concept, and context) mnemonic to guide development of our research questions and review title, described in the Joanna Briggs Institute's Manual for Evidence Synthesis. 24 Munn et al. 25 note that while the PICO (population, intervention, comparator, outcomes) mnemonic for question development is the most well known and widely used, reviewers often force their reviews into this format, which is designed specifically to cater to the information needs of systematic reviews of interventions. As this was a scoping review, and one taking in a broad range of study types and designs, the PCC format was assessed as the most suitable as the "concept" under review can accommodate this range.

The protocol (unpublished) operationalized the PCC as follows: 

Embase, PsycINFO, Medline, CENTRAL, and CINAHL were searched using terms such as "ethni*," "race," "minorit*," "migrant," "culture"

AND "Alzheimer's," "Parkinson's," "neurocognitive disorder" AND "RCT," "cohort," "case control," "longitudinal" (full search strategy is in Appendix A in supporting information). Though quality assessment is not a requirement for scoping reviews, 24 we also developed the following proxy indicators of good practice in conducting research with ethnic minorities: whether researchers described the strategies they used to recruit, support, and retain participants in their research; triangulation for ethnic and cultural diversity through the collection of more than one variable capturing this diversity; using assessment tools that were adapted or designed specifically for ethnic minorities; and investigating diversity through subgroup analyses, corrections, or adjustments. Similar to the data extraction points, these quality indicators were derived via con- 

There were 66 eligible articles (see Figure 1 ) of which 20 comprised results from 8 large studies. These included six from the Washington Heights-Inwood Columbia Aging Project (WHICAP), [30] [31] [32] [33] [34] [35] RCTs included were caregiver interventions and the 3 remaining studies were interventions for help-seeking, 50 MCI, 51 and an RCT looking at how knowledge of race affects diagnosis. 52 Five articles were about culturally tailored interventions including, for example, the development of a "fotonovela" picture book illustrating coping strategies, promoting help-seeking, and stress management for Latino caregivers. 53 Others tested general interventions with multi-ethnic groups. Chinese speakers, 57 and Greek and Italian Australians. 58 The two UK studies looked at Black African, Black Caribbean, and Black British people, 50 and people with Indian and Pakistani backgrounds. 59 The Records screened (n = 4,347)

Full-text articles assessed for eligibility (n = 508)

Full-text articles excluded, with reasons (n = 323)

Articles included as eligible for analysis (n =185)

Articles that did not have intention to recruit ethnic minorities into the research (n = 119) F I G U R E 1 Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flowchart showing inclusion process study from Singapore, which has a majority ethnic Chinese population, focused on the ethnic minority groups from Malaysia and India, 60 while the Netherlands study looked at overseas-born people of Turkish, Surinamese, and Moroccan backgrounds. 61

Thirty-seven articles reported on strategies to recruit and support racial and ethnic minorities' participation in their research (see Table 1 ). Using interpreters and translating study materials was the most common technique used (n = 17), with two articles from the WHICAP study. 34, 35 This included the translation of study materials into the participants' preferred languages, advertising through flyers in English and the target population's language, and provid-ing the option for interventions to be delivered in participants' preferred language. [34] [35] [36] 38, 41, 42, 53, 55, 56, 58, [61] [62] [63] [64] [65] [66] [67] Thirteen articles reported the use of bilingual and bicultural workers, including employing bilingual research assistants, having participants assessed by a physician who spoke their language, and making use of race-concordant community health workers 38, 51, 53, 54, 57, 58, 61, 64, [68] [69] [70] [71] [72] (see Table 1 ).

Researchers commonly gave community presentations to facilitate recruitment with six articles reporting having adopted this strategy. 41 Other techniques included providing options for study questionnaires to be filled out in writing or verbally to cater to participants who were not literate, 82 making use of simplified language in study materials, 63 and providing training in cultural sensitivity for researchers working on such projects. 54 Researchers commonly recruited through specialist clinics with high ethnic-minority patient caseloads such as memory clinics in Chinatown 82 or primary care clinics in predominantly ethnic-minority neighborhoods. 50 Other common sources of recruitment were community organizations and places of worship.

Only one article reported on retention. 76 

Information on race and ethnicity was the most common variable related to ethnic and cultural diversity that studies collected (n = 59, 89%). Items we coded as "race and ethnicity" included those that used either or both of these terms or combinations of them such as "ethnoracial group," 79 as well as studies that focused on one ethnic group such as Hispanics or Japanese Americans. Five studies were coded as having collected information on "other ancestry." These included genetic ancestry, 69 haplotype ancestry, 84 ancestry and surname, 64 as well as country of family's cultural roots. 66 It was less common for studies to collect information on country of birth (n = 9), and time lived in country of settlement (n = 8). Fourteen articles (21%) reported on some aspects of participants' language, including language spoken at home, 66 first or preferred language, 55 bilingualism, 34 age at which use of Spanish and English began, 65 need for interpreters for participation in study, 56 and the language in which study interviews were conducted. 36, 46 One-third of the articles (n = 22) collected more than one variable, triangulating for cultural and linguistic diversity. Nine studies triangulated with one other variable, six with two other variables, and six with three or more other variables (see Table 1 

Twenty-two articles (33%) used assessment tools that were tai- 

Six articles met all of the quality assessment criteria (see Table 2 ). 34 The participation of ethnic minority groups was also enhanced through recruitment from clinics with high caseloads of groups of interest, 50,64,82 places of worship and community organizations, 64 and direct presentations to communities by the research team. 64 Employment of bilingual staff in the research team strengthened recruitment 64 and assessment. 69 Other methods to facilitate ethnic minorities' participation were providing flexible options for participation, 82 for example, by providing options for written and verbal assessment to cater to differences in literacy, 82 and providing monetary compensation for participation. 50 Cultural and linguistic diversity were triangulated using multiple variables, and researchers controlled and adjusted for these to investigate differences in dementia among ethnic minorities. Data on ethnicity combined with data on age of migration, 34 country of origin, 34, 50 years lived in settlement country, 34 Our key findings indicate that the most common techniques identified to facilitate recruitment and participation were the use of interpreters and the translation of study materials, followed by the employment of bilingual and bicultural researchers. One-third of the articles reported on the use of translated versions of assessment tools or the use of measures with ethnic-adjusted norms. In the studies identified as high quality, ethnic minority participants were most often recruited via community-based approaches typically comprising gaining support for recruitment from service providers working with ethnic minority communities, 50, 64, 69, 82 and engaging in community outreach through community organizations and institutions. 64 These findings reinforce that partnership with communities is an important component of dementia research involving ethnic minority communities. 89 As underscored in several systematic reviews, 90 HICs in which many ethnic minority communities overwhelmingly seek basic and primary care needs through such settings. 19 Additionally, employment of researchers or clinical staff who spoke the participants' primary language 38, 51, 53, 54, 57, 58, 61, 64, [68] [69] [70] [71] [72] or translation of study materials 58 were key ways in which researchers made participation in dementia research accessible to ethnically diverse people.

The researchers used in-language versions of the relevant tools 58, 64, 82 and where these were not available, translated and back-translated the tools themselves. 34 To further enable participation of ethnic minority participants in their studies, researchers provided flexible modes of participation that took into account different levels of literacy. 82 The most common variables collected in order were race and ethnicity, native language, country of birth, and length of time in country of settlement. Only one study collected information on reason for migration, and this was related to the specific study aims. 85 In the reported analyses, years of education was the most common variable controlled for. Only one study 58 adjusted for English proficiency, which related to the study aims.

Finally, studies that triangulated cultural and linguistic diversity through multiple variables beyond race and ethnicity often provided more nuanced analyses around diversity. This allowed greater appreciation of how variables such as socioeconomic status can have an impact on dementia prevention, treatment, and care. 82 By recruiting sufficient numbers to support subgroup analyses, 69 researchers were also able to make valuable contributions toward understanding differences in etiology between groups. 1

Our third objective in this review was to collate findings to make recommendations for consistent practices that will enhance the inclu-siveness of dementia research (Objective 3). These recommendations ( 96 New methodological approaches may emergefor example, co-design and co-production-but ultimately, understanding local context, especially in marginalized communities, and how power and conflict affect the health of the most vulnerable is critical.

There are limitations in the articles on which our recommendations are based. The included articles are overwhelmingly from the United States. As the issues surrounding dementia in ethnic minorities may be specific to historical and social contexts, context-specific reviews may be of value. Another major limitation of the included articles was the paucity in the reporting of retention and recruitment rates, which limits our ability to comment on the effectiveness of the strategies used by these studies to include ethnic minorities in their research. 

Provide greater detail in descriptive statistics of sample characteristics and comment on whether the sample reflects the target population. Recognize the diversity within ethnic minority populations (e.g., cultural differences in meaning of dementia and stigma). Where possible, use between-subgroup analysis, rather than comparisons only between minorities (combined) and the mainstream population. Adjust for relevant covariates such as years lived in country of settlement, ancestry, and proficiency in language of country of which is often correlated with race and ethnicity. 49 a Triangulating information on time in country and country of birth will capture important within-community differences (e.g., recent arrivals versus established communities; first versus second generation). b Pre-and post-migration experiences differ among migrants (e.g., economic migrants compared to asylum seekers and refugees). Collecting information on conditions of migration will contribute to how these differences influence dementia risk and help-seeking. c We recommend the collection of this information as religious affiliation and spirituality can be an important aspect of the diversity of ethnic minority populations, and is known to play a role in well-being after a diagnosis of dementia, 50 how dementia is understood, and in whether help is sought. 51. reduced our ability to deal comprehensively with all these areas. In particular, our restriction of the review to articles published from 2010 onward excluded information about recruitment and retention from some of the longitudinal studies in which this information might have been published before the search period. We have provided information about the studies in the review, and readers may wish to refer to earlier publications from these studies (especially WHICAP, SALSA, HAAS, REACH, and REACH II) for greater detail about techniques to enhance recruitment, participation, and retention. Finally, the review excluded evidence from gray literature, including government reports using large datasets.

The COVID-19 pandemic has disproportionately impacted many ethnic minorities across the world as existing inequalities associated with ethnicity, race, sex, and poverty have intersected to further marginalize already vulnerable groups. Medical research has a crucial part to play as part of a wider global response to secure health justice for all.

An important part of this response is strengthening current research guidelines to offer recommendations to researchers on how to plan and report on a minimum set of variables related to ethnic diversity, for example, extensions to existing research guidelines such as the Widespread uptake of such guidance will also make it easier for decision makers (e.g., policy makers, evidence synthesizers, and guideline producers) to find and use evidence to reduce ethnic disparities in health.

This 

Perspectives on ethnic and racial disparities in Alzheimer's disease and related dementias: update and areas of immediate need

Help-seeking and service use for dementia in Italian, Greek and Chinese Australians

Improving access to dementia services for people from minority ethnic groups

Unforgotten: Love and the culture of dementia care in India

Racial and educational disparities in dementia and dementia-free life expectancy

When will clinical trials finally reflect diversity?

The UCL-Lancet Commission on Migration and Health: the health of a world on the move

A systematic literature review of reported challenges in health care delivery to migrants and refugees in high-income countries -the 3C model

Including ethnic and cultural diversity in dementia research

Representation of ethnic groups in dementia trials: systematic review and meta-analysis

Advancing research on racial-ethnic health disparities: improving measurement equivalence in studies with diverse samples. Front Public Health

Race: as signifier and Race: as synonym

Ethnic categories 2020

Race as biology is fiction, racism as a social problem is real: anthropological and historical perspectives on the social construction of race

The reporting of race and ethnicity in medical and science journals: comments invited

Ethnicity and old age: Expanding our imagination

Language barriers and hospitalized children: are we overlooking the most important risk factor for adverse events

Recruitment and retention of underrepresented populations in Alzheimer's disease research: a systematic review

Systematic review identified suboptimal reporting and use of race/ethnicity in general medical journals

Capturing complexity in the United States: which aspects of race matter and when?

Scoping studies: towards a methodological framework

Systematic review or scoping review? Guidance for authors when choosing between a systematic or scoping review approach

JBI Manual for Evidence Synthesis

What kind of systematic review should I conduct? A proposed typology and guidance for systematic reviewers in the medical and health sciences

Australian Bureau of Statistics. Standards for statistics on cultural and language diversity. Canberra: Australian Bureau of Statistics

It Doesn't Count! Towards Consistent National Data Collection and Reporting on Cultural, Ethnic and Linguistic Diversity

Changes in refugees' mental health: what can granular analyses show

Mental health research and evaluation in multicultural Australia: developing a culture of inclusion

Observed hearing loss and incident dementia in a multiethnic cohort

Type 2 diabetes and ethnic disparities in cognitive impairment

Secular Trends in the Incidence of Dementia in a Multi-Ethnic Community

Medicare expenditures and health care utilization in a multiethnic community-based population with dementia from incidence to death

Bilingualism does not alter cognitive decline or dementia risk among Spanishspeaking immigrants

Medicaid contributes substantial costs to dementia care in an ethnically diverse community population

Acculturation and depressive symptoms in latino caregivers of cognitively impaired older adults

Physical activity modifies the influence of apolipoprotein E epsilon4 allele and type 2 diabetes on dementia and cognitive impairment among older Mexican Americans

Cardiovascular risk score, cognitive decline, and dementia in older Mexican Americans: the role of sex and education

The honolulu-asia aging study: epidemiologic and neuropathologic research on cognitive impairment

Mid-life proteinuria and latelife cognitive function and dementia in elderly men: the Honolulu-Asia Aging Study

Is religious coping associated with cumulative health risk? An examination of religious coping styles and health behavior patterns in Alzheimer's Dementia caregivers

Racial and ethnic differences in the delivery of the resources for enhancing Alzheimer's caregiver health II intervention

The moderating influence of demographic characteristics, social support, and religious coping on the effectiveness of a multicomponent psychosocial caregiver intervention in three racial ethnic groups

Interleukin 9 alterations linked to alzheimer disease in african americans

Race modifies the relationship between cognition and Alzheimer's disease cerebrospinal fluid biomarkers

Characteristics and mental health of Hispanic dementia caregivers in New York City

Comparative effectiveness of 2 interventions for Hispanic caregivers of persons with dementia

Coding mutations in SORL1 and Alzheimer disease

Whole genome sequencing of Caribbean Hispanic families with late-onset Alzheimer's disease

The IDEMcare -Improving dementia care in Black African and Caribbean groups study: a feasibility cluster randomised controlled trial

Preventing cognitive decline in Black individuals with mild cognitive impairment: a randomized clinical trial

Are clinical diagnoses of Alzheimer's disease and other dementias affected by education and self-reported race?

Effectiveness of a fotonovela for reducing depression and stress in Latino dementia family caregivers

The effect of a personalized dementia care intervention for caregivers from Australian minority groups

Is there a relationship between Mini Mental Status Examination Scores and the activities of daily living abilities of clients presenting with suspected dementia

Identification and rates of delirium in elderly medical inpatients from diverse language groups

A pilot of an intervention delivered to chinese-and spanish-speaking carers of people with dementia in australia

A comparison of verbal communication and psychiatric medication use by Greek and Italian residents with dementia in Australian ethno-specific and mainstream aged care facilities

Perceptions of self-defined memory problems vary in South Asian minority older people who consult a GP and those who do not: a mixed-method pilot study

Care participation and burden among informal caregivers of older adults with care needs and associations with dementia

Prevalence of mild cognitive impairment and dementia in older non-western immigrants in the Netherlands: a cross-sectional study

Exploring the relationship between physical health, depressive symptoms, and depression diagnoses in Hispanic dementia caregivers

Increasing self-efficacy and knowledge in carer training: hispanic versus Caucasian

Younger age of dementia diagnosis in a Hispanic population in southern California

Bilingual language intrusions and other speech errors in Alzheimer's disease

The Effectiveness of a Culturally Sensitive Cognitive Behavioral Group Intervention for Latino Alzheimer's Caregivers

Neighborhood Context, Dementia Severity, and Mexican American Caregiver Well-Being

A videophone psychosocial intervention for dementia caregivers

Neuropathological Diagnoses of Demented Hispanic, Black, and Non-Hispanic White Decedents Seen at an Alzheimer's Disease Center

Cortisol outcomes among Caucasian and Latina/Hispanic women caring for a family member with dementia: A preliminary examination of psychosocial predictors and effects of a psychoeducational intervention

Reducing safety risk among underserved caregivers with an Alzheimer's home safety program

Heterogeneity of cognitive trajectories in diverse older persons

The Puerto Rico Alzheimer disease initiative (PRADI): a multisource ascertainment approach

Characterization of Mexican Americans with mild cognitive impairment and Alzheimer's disease

Perceived stress and cognitive decline in different cognitive domains in a cohort of older African Americans

Helping Hispanic dementia caregivers cope with stress using technology-based resources

Social support, caregiver burden, and life satisfaction in a sample of rural African American and White caregivers of older persons with dementia

Too much of a good thing?: positive religious coping predicts worse diurnal salivary cortisol patterns for overwhelmed African American female dementia family caregivers

Ethnoracial differences in the clinical characteristics of Alzheimer's disease at initial presentation at an urban Alzheimer's disease center

Early life development in a multiethnic sample and the relation to late life cognition

Vitamin D status and rates of cognitive decline in a multiethnic cohort of older adults

Depressive symptoms in Chinese-American subjects with cognitive impairment

The Resources for Enhancing Alzheimerʼs Caregiver Health (REACH): Project design and baseline characteristics

Ancestral origin of ApoE epsilon4 Alzheimer disease risk in Puerto Rican and African American populations

Sex Differences in the Prevalence and Incidence of Cognitive Impairment: does Immigration Matter?

Linkage analyses in Caribbean Hispanic families identify novel loci associated with familial lateonset Alzheimer's disease

A randomized crossover trial to study the effect of personalized, one-to-one interaction using Montessori-based activities on agitation, affect, and engagement in nursing home residents with Dementia

Culturally and Linguistically Diverse (CALD) Dementia Research Action Plan

Recruitment and retention of underrepresented populations in Alzheimer's disease research: a systematic review

Transparency, trust and minimizing burden to increase recruitment and retention in trials: a systematic review

Factors that impact on recruitment to randomised trials in health care: a qualitative evidence synthesis

A systematic review of the effect of retention methods in population-based cohort studies

Exploring non-retention in clinical trials: a meta-ethnographic synthesis of studies reporting participant reasons for drop out

Barriers and enablers to patient recruitment for randomised controlled trials on treatment of chronic wounds: a systematic review

Experience-based design, co-design and experience-based co-design in palliative and end-of-life care

Including ethnic minorities in dementia research: Recommendations from a scoping review