Use of Critical Race Theory to Inform the Recruitment of Black/African American Alzheimer’s Disease Caregivers into Community-Based Research

Abstract

Nearly 30 years after the 1993 National Institute of Health (NIH) Revitalization Act, which required the inclusion of women and racial/ethnic minority groups into government-funded clinical trials, minority groups remain underrepresented in research, and disparities in health outcomes and longevity remain. These problematic trends are particularly evident when considering Black and community-based research in Alzheimer’s disease and related dementia (ADRD). Deeply rooted historical race-based mistreatment in research and in the health care system at large along with ineffective recruitment approaches persists as barriers to the low participation of Black participants in dementia care studies. In this article, we explore Critical Race Theory, its tenets, and applicability to inform national strategies to encourage participation of Black participants in ADRD research. We describe how Critical Race Theory constructs (e.g., race consciousness, storytelling, and praxis) can be used to inform recruitment strategies of Black caregivers for people living with dementia into community-based research. We provide a case example that draws upon our NIH-funded Adult Day Service Plus randomized trial and its engagement of Black caregivers into a community-based biomarker research arm of the main trial. Although the contribution of this article is primarily theoretical, in the spirit of Critical Race Theory it is also a call for action to transform dementia care research by offering a conceptual tool to assure inclusivity of Black participants, who are disproportionately affected by dementia when compared to other racial groups.

In 1993, the National Institute of Health (NIH) enacted the NIH Revitalization Act (U.S. Department of Health and Human Services, 1994), which required the inclusion of women and racial/ethnic minority groups into government-funded clinical trials. The Act was partially in response to race- and gender-based disparities in health outcomes and to improve the generalizability of research findings to underrepresented groups (U.S. Department of Health and Human Services, 1994). Nearly 30 years later, there is still low participation in trials and high prevalence of disparities among racial/ethnic minority groups along with many health outcomes, including life expectancy (U.S. Department of Health and Human Services, 2013). This is particularly the case for nonpharmacological clinical trials and community-based research on Alzheimer’s disease and Alzheimer’s disease and related dementia (AD/ADRD), which has largely failed to enroll racially and ethnically diverse families (Fargo et al., 2016; Gilmore-Bykovskyi et al., 2019; Young et al., 2020). While the rate of AD/ADRD in the United States is expected to double overall by 2060 (Matthews et al., 2019), rates for Black/African Americans (hereinafter referred to as Black) are anticipated to double those for Whites (Alzheimer’s Association, 2019). Given this persistent disparity, it is critical to develop effective recruitment strategies to reach Black people living with dementia and their families and encourage their participation in AD/ADRD research.

Race-based mistreatment rooted in historical and present-day medical abuses, as well as poorly conceived recruitment efforts, appears to account for low participation in research among the Black community (Lincoln et al., 2021). One commonly referred to example is the historical memory of the U.S. Public Health Service Syphilis Study at Tuskegee, but there are also contemporary medical mistreatments that continue to reinforce distrust and reluctance to participate in research (Dilworth-Anderson, 2011). Additionally, other barriers to research participation have been identified at the researcher and individual levels. Recruitment barriers at the researcher level include the use of culturally inappropriate language, limited community outreach to key community leaders, stakeholders, and individuals themselves, and limited understanding of caregiving values, beliefs, and expectations as well as the lived experiences of Black people living with dementia and their caregivers (Aaron, 2016; Epps et al., 2015; George et al., 2014). Documented challenges at the individual level include participants’ lack of access to clinical trials (e.g., proximity to study sites) and awareness of clinical trials (e.g., access to information about research via physician referrals; Watson et al., 2014). Furthermore, at the individual level, limited perceived benefits of participating in research and insufficient information regarding study protocols have been cited as barriers to research participation (Williams et al., 2010).

Identifying unique strategies for reaching and involving Black people living with dementia and their family caregivers might help to address their limited participation to date in dementia care research and better address our understanding of health disparities in dementia care. Recruitment strategies, materials, nomenclature, and value propositions should all be rooted in conceptual frameworks that reflect an understanding of cultural nuances and are relevant to Black families affected by AD/ADRD. As the 2017 National Research Summit on Care, Services, and Supports for Persons with Dementia and their Caregivers (Gitlin et al., 2018) and reviews of the literature emphasize (Gaugler & Burgio, 2016; Gilmore-Bykovskyi et al., 2019), the lack of racial, ethnic, or geographical representation in dementia caregiving intervention samples continues to impede not only the scientific base, but also ongoing efforts at dissemination and wide-scale implementation (Larson & Stroud, 2021; Llanque & Enriquez, 2012; Napoles et al., 2010). Furthermore, as stated by Gilmore-Bykovskyi et al. (2019), “ensuring NIH guideline compliance necessitates shared investments from researchers, editors, and reviewers to ensure group differences are systematically identified and reported” (p. 145).

In this article, we explore how Critical Race Theory and its tenets can be used in tandem with other national initiatives such as the National Strategy for Recruitment and Participation in Alzheimer’s and Related Dementias Clinical Research strategic priority (Elliott, 2020; NIH/National Institute on Aging [NIA], 2018) and the NIH Alzheimer’s & Dementia Outreach, Recruitment, & Engagement Resources (U.S. Department of Health and Human Services, n.d.) to inform recruitment strategies that encourage and support participation of Black caregivers of people living with dementia in community-based research. We provide Critical Race Theory as an exemplar to inform the recruitment of Black ADRD caregivers into a biomarker research study. To our knowledge, the use of Critical Race Theory tenets has not informed recruitment strategies to enhance outreach and enrollment of Black AD/ADRD caregivers in research studies. While the contribution of this manuscript is primarily theoretical, in the spirit of Critical Race Theory, it is also a call for action and offers guidance for transforming how dementia care research recruitment is conducted.

What Is Critical Race Theory?

Critical Race Theory was developed in the 1970s by legal scholars to delineate how race and racism operate in the law and in society. Critical race theorists appreciate racism as a logical outcome of historically and contemporary racialized policies that are woven into the fabric of society by way of laws, policies, practices, and political movements as well as cultural institutions.

As racism is embedded within the structure and fabric of American society, it appears both normal and natural (Ladson-Billings, 2000). Racism—a system of oppression—is not simply an interpersonal exchange based on individual acts of prejudice that can be eradicated, but an endemic structural feature of American society (Parker & Lynn, 2002). This system of oppression underlies our historical consciousness and reifies hierarchies and consequently systems and practices based on race. A theme of Critical Race Theory is that race and races are products of social thought and relations (Delgado & Stefancic, 2017). The classification of races is not objective and has no biologic or genetic basis; rather, race is the product of societal invention. A system of racial/ethnic segregation, associated practices, and laws that restrict access to wealth accumulation vis a vis housing as well inequitable access to high-quality health care, services, and health-promoting resources have long resulted in disparities in health, wellness, and longevity.

A historical example, which has contemporary implications, is the national U.S. eugenics movement. This movement began in the 1800s and deemed that Blacks were inferior to Whites due to genetic determinism. As the eugenics movement grew, the scientific community called for the forced sterilization of those deemed mentally ill and of low literacy based on prevailing biological and genetic theory at the time, which assumed the American society would improve by breeding of Anglo Saxons and Nordics due to their assumed high intelligence quotient. This in turn targeted Blacks, Indigenous people, and those with disabilities for eugenics programs. Such practices were codified into law (i.e., the Racial Integrity Act, Jim Crow Law), which legalized racial segregation and marginalized Blacks from access to public services and resources. The eugenics movement sought to provide a scientific basis for discriminatory practices and continues to provide support for structural racism in the United States. It, in part, implicitly and explicitly promotes and supports disparities in health outcomes and health services utilization.

Which CRT Concepts Can Be Used to Inform Recruitment Strategies?

Critical Race Theory includes several tenets and concepts (Delgado & Stefancic, 2017; Ford & Airhihenbuwa, 2010; Parker & Lynn, 2002) that can help investigators assume an equity focus while carrying out research, scholarship, and practice. The use of Critical Race Theory and its tenets has been applied previously in public health and health sciences to examine race-based health inequalities but has not been applied to dementia care research (Bowleg, 2012; Ford & Airhihenbuwa, 2010; Graham et al., 2011). More specifically, we propose that the lens of Critical Race Theory can inform the development of recruitment strategies that target Black caregivers. As it relates to our focus, we suggest three key tenets of Critical Race Theory that can inform the development of recruitment strategies that may improve outreach, messaging, and enrollment of Black AD/ADRD caregivers. These three tenets include race consciousness, storytelling, and praxis (Table 1) and provide the lexicon for understanding racial concepts and relations to inform the selection of recruitment strategies for a dementia care studies (Ford & Airhihenbuwa, 2010).

Table 1.

Critical Race Theory Concepts and Definitions to Inform Recruitment Strategies of Black ADRD Caregivers

Concept	Definition	Examples from the PEACE Study
Race consciousness	Acknowledgment of the workings of race and racism in social contexts or in one’s personal life	Considerations that the racialized social context of Black caregivers would be related to their participation in research and use of supportive services to assist with their caregiving needs given their historical race-based experiences with research and health services
Storytelling/counter-storytelling	The use of experiential knowledge to inform counter-stories, parables, and narratives to explain the experiences of nondominant groups	The creation of a culturally responsive brief, personal video clip that introduced the lead author (a Black, female academician), why she is conducting her study, and her personal experiences with caring for a family member with dementia that led her to examine stress in Black family caregivers of people living with dementia
Praxis	An iterative process by which the knowledge gained from theory, research, personal experiences, and practice inform one another	The use of knowledge gained from ADS site administrators, previous research, and personal experiences of the authors to address the lack of personal touch as a barrier to recruiting Black caregivers

Note: ADRD = Alzheimer’s disease and related dementia; ADS = Adult Day Service; PEACE = Providing Evidence-Based Approaches for Caregiver Stress.

As given in Table 1, race consciousness is the acknowledgment and explicit study of how race functions in society and everyday life. Storytelling/counter-storytelling is the use of experiential knowledge to inform counter-stories, parables, and narratives to explain the experiences of nondominant groups. Storytelling/counter-storytelling is a tool used by critical race theorists to tell stories that reflect the experiences, knowledge, and cultural perspectives of racial/ethnic communities. Praxis is an iterative process by which knowledge gained from theory, personal experiences, and practices is used to inform each other. Because Critical Race Theory suggests that tenets are interrelated and their application requires an iterative process, these tenets need to be used throughout the development and delivery of a recruitment strategy.

Case Exemplar

We provide an example of how these three tenets can shape recruitment processes by drawing upon an ancillary story of the Adult Day Service (ADS) Plus Study, a pragmatic trial sponsored by the NIA. The main trial is testing whether augmenting ADS with a systematic support program for family caregivers of ADS clients improves caregiver well-being and increases ADS use (Gitlin et al., 2019). The caregiver support program (Gitlin et al., 2006; Reever et al., 2004), ADS Plus, is delivered by ADS staff who are trained in its protocols. Through face-to-face meetings on-site or telehealth, staff provide disease education, referral and linkages, support, and strategies tailored to family needs and family-identified daily care challenges. A full protocol of the parent study is published elsewhere (Gitlin et al., 2019). The ADS Plus study and its ancillary study (see below) were reviewed and approved by the Johns Hopkins Medical Institution and Johns Hopkins School of Public Health Institutional Review Boards (ADS Plus Clinical Trial #NCT-2927821).

We developed an ancillary study to the main trial also funded by the NIA to specifically examine the experiences of Black caregivers. This study, Providing Evidence-based Approaches to Caregiver stress (PEACE) Study, was designed to examine the effectiveness of ADS to reduce subjective and physiological (cortisol) stress among Black caregivers. For this study arm, Black caregivers were recruited from control group sites participating in the main trial and from other ADS programs in the Greater Baltimore area. Similar to previous studies that hypothesize benefits of ADS for White caregivers (Klein et al., 2016; Liu et al., 2018), we hypothesized that ADS was a naturally occurring intervention that may decrease subjective and physiological stressors in Black AD/ADRD caregivers in relation to the days that their family members with cognitive impairment or AD/ADRD utilize ADS. Over a time period of 4 days, caregivers were asked to self-collect their salivary cortisol 4 times a day (upon awakening, 30-min later, at dinner time, and before bedtime). The PEACE Study also included a qualitative arm to examine facilitators and barriers to ADS use among Black caregivers. Findings from the PEACE Study may bolster the capacity of ADS to offer feasible and acceptable services to Black ADRD caregivers. Nationally, most ADS clients are racial/ethnic minorities (Harris-Kojetin et al., 2016; Lendon et al., 2020), and if findings from the proposed study demonstrate that the use of ADS is associated with a reduction in physiological measures of stress among Black dementia caregivers, targeted interventions to increase access to and the benefits of ADS for Black caregivers would be important to develop.

Initial Barriers to Recruitment

An initial barrier encountered in enrolling Black ADRD caregivers to collect biomarker data (salivary cortisol) in the Baltimore region is the historical memory of the misuse of Henrietta Lacks’ biospecimens by Johns Hopkins University (Skloot, 2017). Henrietta Lacks was a Black woman treated at Johns Hopkins Hospital in 1951 for terminal cervical cancer, whose cells were—unknowingly to her or her family—collected and used independently of her treatment without her consent. To overcome this historical barrier, it was critical to develop relationships with ADS administrators in the Greater Baltimore area who were trusted members of the community and served as gatekeepers. To introduce the study to ADS staff and families, the ADS administrators invited the lead author to present at caregiving community events and trainings over a period of 12 months.

Application of Critical Race Theory to Recruitment of Black ADRD Caregivers

Race Consciousness

Race consciousness, a concerted effort to remain conscious of the role and impacts of race (Table 1), informed all aspects of the recruitment strategy for the PEACE Study. Race consciousness suggests the importance of considering the racialized social context of Black caregivers’ lives and how life experiences may influence decisions to participate in research and use of supportive services. Beginning with recognition and understanding of and respect for historical race-based experiences with research and health services is critical.

The purpose of the PEACE Study was to examine psychosocial stressors and supports to alleviate stress. Our first task was to develop a “value proposition” or message that would resonate with the target population. Our first effort to explain the study purpose as examining “stress” in recruitment materials did not resonate with participants based on initial feedback. Black caregivers often indicate that the care they provide is not stressful, and previous work highlights that Black caregivers compared to White caregivers have higher reports of positive caregiving experiences (Roth et al., 2015), although within-group analyses suggest higher rates of depression than previously reported (Parker & Gitlin, 2021). Drawing upon the perspective of Black caregivers’ cultural values and norms regarding caregiving to inform how the research purpose is described, the study was purposefully branded the PEACE Study. The acronym PEACE reflects the desired attributes that the target sample for this study, Black AD/ADRD caregivers, sought. Additionally, a study graphic (Figure 1) was purposefully created with caregiver input. Each of its elements was purposively designed; for example, darker hue hands were used to indicate that the study was specifically designed for inclusion of Black caregivers; a dove was selected as a universal sign for PEACE.

Figure 1.

Providing Evidence-Based Approaches for Caregiver Stress (PEACE) Study logo.

In developing a recruitment strategy, it was important to understand that Black people living with dementia and their caregivers tend to underuse formal sources of dementia care due to historical mistrust and lack of access (Parker & Fabius, 2020). Thus, key to a recruitment strategy was to target ADS sites situated in Black communities to recruit caregivers. Black caregivers may be more apt to utilize dementia support services located in their community. As such, Geographic Information System mapping techniques were used to identify ADS sites that were located in areas that included a high density of Black older adults. Given the history of race-based segregation in the Greater Baltimore area and that many health-promoting resources are located in predominately White neighborhoods (Brown, 2021), it was important to consider the role of race when accessing ADS. Therefore, ADS sites (n = 17) that were located in geographic areas with a high density of Black older residents were targeted (Figure 2). Of the 17 ADS sites, the lead author developed a partnership with three sites to recruit for the PEACE Study. These three sites were selected as they expressed a committed interest in engaging in research to identify resources to promote well-being among Black caregivers.

Figure 2.

Adult Day Service sites in Baltimore City by the percentage of African American/Black by census tract.

The initial recruitment material for the PEACE Study consisted of flyers, brochures, and letters to caregivers. The recruitment materials included the PEACE graphic and information on how stress affects the well-being of Black caregivers. The three ADS administrators worked with the lead author to refine recruitment materials and an outreach plan. Their initial feedback was that more culturally tailored messaging would be useful and better resonate with Black caregivers. Specifically, the feedback from ADS administrators underscored how the historical memory of the use of biospecimens from Henrietta Lacks by Johns Hopkins University made many potential participants leery of engaging in the study, particularly because of its collection of biospecimens. Furthermore, administrators indicated that flyers, brochures, and letters did not have a personal touch and suggested personalization of recruitment materials to reach Black caregivers. In response, the lead author developed a brief, personal video clip. The video clip introduced herself (a Black, female academician), why she was conducting her study, and how her personal experiences with caring for a family member with dementia led her to examine stress in Black family caregivers of people living with dementia. The video clip is an example of storytelling described in more detail below. These strategies reflect an understanding of racial consciousness of this particular geographic location and the tailoring of recruitment materials and approaches to cultural values and historical experiences.

Storytelling/Counter-Storytelling

Storytelling is a tool that helps researchers translate complex ideas into nonthreatening tales (Ford & Airhihenbuwa, 2010). Such stories can be used to personalize the experiences of racial/ethnic communities and reduce the divide between practices of majority researchers and values and beliefs of minority communities (Ford & Airhihenbuwa, 2010). The video clip created by the lead author was used to introduce her study to ADS administrators, who in turn showed it to Black caregivers, resulting in effective recruitment of the sites as well as caregivers within the sites. The video clip told the personal story of how the lead author witnessed her grandmother provide care for her husband, who had dementia, and the impact of providing primary care addressing the mental and physical health of her grandmother. The video clip included personal photos of the lead author’s grandparents (a Black couple, married for 50 years) and a brief description of the time period that the lead author’s grandmother provided care. The use of the video as a recruitment tool was introduced midway into the study and immediately yielded an additional five participants of the 11-person sample who completed the study protocol.

The recruitment strategies developed for the PEACE Study were informed by the NIH/NIA’s national recruitment strategy to use input from community partners to identify best-fit in terms of symbols used (PEACE graphic), communication modalities (video clip), messaging, and appropriate communication channels (through ADS situated in Black communities; i.e., Black caregivers who use ADS; U.S. Department of Health and Human Services, n.d.). All of these elements tell a story that resonated with the targeted population.

Praxis

The recruitment strategy for the PEACE Study was also informed by praxis—an iterative process grounded in theory, research, and personal experiences of the ADS site administrators and authors (Table 1). A critical component in developing the recruitment strategies was relying on the relationships established with ADS administrators who served as gatekeepers in the Greater Baltimore area. These relationships matured into sustainable partnerships in which a bidirectional flow of information occurred; this in turn removed the power dynamics between the academicians and the community. The feedback from the administrators on the initial recruitment materials (e.g., flyers, brochures) led to self-reflection on how strategies could be more culturally tailored. As noted by Ford and Airhihenbuwa, “community engagement and critical self-reflection enrich research processes, while research based on the lived experiences of marginalized communities provides the communities with more meaningful data for their ongoing efforts toward collective self-improvement” (p. S32).

Specifically, critical self-reflection led the lead author to develop a personalized video to be used as a tool to reach and recruit Black caregivers to participate in the PEACE Study. The adaptation of the recruitment strategy with the inclusion of the personalized recruitment video was created through knowledge learned from the experiences of ADS site administrators when delivering the initial recruitment material (i.e., flyers, brochures). The community feedback and engagement from the ADS administrators enriched the recruitment strategies employed by the PEACE Study through their willingness to share the narratives of the lived experiences of Black caregivers who utilized their ADS. Further, this relationship-building assisted with gaining trust among Black AD/ADRD caregivers.

As suggested by the construct of praxis, the critical race process comes full circle when researchers use the knowledge obtained through their studies to address the causes of inequalities (Ford & Airhihenbuwa, 2010). As it relates to the PEACE Study, we addressed the limited participation of Black caregivers for people living with dementia in community-based biomarker research through the use of a personalized storytelling approach to better relate to and be transparent with Black caregivers and this resulted in effective study recruitment.

The approaches used for the PEACE Study resulted in 27 individuals expressing interest in participating (13 eligible, 14 ineligible). Of the 13 eligible, n = 11 participants enrolled in the study before data collection unfortunately abruptly ended due to coronavirus disease 2019 and the forced closure of ADS (Gaugler et al., 2021). The investment in time needed to build strong trust and relationships yielded the desired enrollment of Black ADRD caregivers in the PEACE study and also resulted in a 100% retention rate and 100% adherence to the salivary biomarker collection protocol.

Discussion

We propose in this article that three key constructs of Critical Race Theory provide a useful framework for informing recruitment and enrollment of Black AD/ADRD caregivers. The framework can be used in conjunction with national initiatives to recruit Black caregivers of people living with dementia into dementia-care research. The strategies developed and used in the PEACE Study were informed by Critical Race Theory and align with NIH/NIA’s strategic priorities to focus on developing and disseminating culturally appropriate, customizable messaging tools and other outreach resources (NIH/NIA, 2018; U.S. Department of Health and Human Services, n.d.). By centering the PEACE Study recruitment narrative based on the desired attribute of personal experiences of Black AD/ADRD caregivers, the material reflected their cultural values and norms for caregiving.

Remaining conscious of the role of race, and how race-based segregation in the Greater Baltimore area may affect the use of formal support services, allowed for targeted ADS sites to serve as entry points for information delivery and communication channels to recruit for the study. These efforts are consistent with the strategic priority of the National Strategy for Recruitment and Participation in Alzheimer’s Disease and Related Dementias Clinical Research to “increase awareness and engagement (Goal 1)” of diverse populations using tailored messaging at the community (NIH/NIA, 2018). Furthermore, we aligned our recruitment and enrollment approaches with the NIH/NIA’s national strategy by using ADS site administrators as gatekeepers, with whom we built sustainable partnerships to provide a bidirectional flow of information. Such a step was useful to inform the tailoring of the PEACE recruitment material. The iterative process of developing recruitment materials grounded in theory, research, and personal experiences was also critical in developing the innovative personalized recruitment video.

As praxis, the critical race process is completed when researchers use the knowledge gained from research to address one or more causes of inequities, a critical aspect and social justice-oriented call that is not explicitly a part of other national initiatives. Thus, the use of Critical Race Theory is important to leverage with other national initiatives as it provides actionable steps to address the limited engagement of Black caregivers into community-based research. An actionable step not found in national dementia strategies is the use of storytelling/counter-storytelling as a tool to describe a problem using narratives from a nondominant perspective. Storytelling as a tool personalizes the experiences of minorities and helps to reduce the power dynamics between researchers and communities. Furthermore, this tool may be an effective measure to encourage participation in research among Black caregivers by creating a communal understanding on the value of how research can be used to understand the role of caregiving on health outcomes. The use of Critical Race Theory in conjunction with national initiatives provides tools to involve Black communities in research to increase the relevance and impact of dementia care research and reduce disparities in study participation.

We recognize that the personal experiences of caregivers in the Greater Baltimore area are unique and may not be applicable to Black caregivers in other geographic locations. Yet, the Critical Race Theory concepts that we employed provide researchers with the lexicon and concepts to inform recruitment strategies that may be applicable to other geographic areas based on the historical and lived experiences of diverse caregivers.

In the spirit of Critical Race Theory, the three tenets, race consciousness, storytelling, and praxis, serve as a call for action and provide guidance for transforming the recruitment strategies to encourage Black ADRD families to participate in dementia care research. This in turn may help to address disparate racial AD/ADRD outcomes. It is critical that the field use such frameworks as Critical Race Theory to (a) identify emerging practices to recruit Black dementia caregivers into community-based research and (b) conceptualize best practices necessary to develop and support equitable and sustainable community partnership.

Conclusion

Critical Race Theory can be instrumental in guiding researchers to identify unique culturally informed strategies to reach and involve Black people living with dementia and their family caregivers in dementia research, as it may be a means to address the disparities in ADRD diagnosis, treatment, and access to care. Even with national prioritization, there are ongoing gaps in recruitment and enrollment into emerging dementia care community-based interventions. As demonstrated, the use of Critical Race Theory is a beneficial tool that provides researchers with the lexicons and concepts to understand how structural racism contributes to low research participation and enrollment.

Funding

This work was funded by the National Institutes of Health/National Institute on Aging (NIA; K01AG066812 to L. J. Parker, R01AG049692 to J. E. Gaugler and L. N. Gitlin). This work was also supported by the NIA of the National Institutes of Health under award number U54AG063546, which funds NIA Imbedded Pragmatic Alzheimer’s Disease and AD-Related Dementias Clinical Trials Collaboratory (NIA IMPACT Collaboratory). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Conflict of Interest

None declared.