The Gerontologist

cite as: Gerontologist, 2022, Vol. XX, No. XX, 1–11

https://doi.org/10.1093/geront/gnac060
Advance Access publication April 26, 2022

Review Article

Downloaded from https://academic.oup.com/gerontologist/advance-article/doi/10.1093/geront/gnac060/6574426 by guest on 25 July 2022

Assessing Equitable Inclusion of Underrepresented Older
Adults in Alzheimer’s Disease, Related Cognitive Disorders,
and Aging-Related Research: A Scoping Review
Nisha Godbole, BS, BA,1 Simona C. Kwon, DrPH, MPH,2 Jeannette M. Beasley, PhD, MPH,3,4
Timothy Roberts, MLS,2 Julie Kranick, MPhil,2 Jessica Smilowitz, MPH,3 Agnes Park, BS,3
Scott E. Sherman, MD, MPH,2,3,5, Chau Trinh-Shevrin, DrPH,2 and Joshua Chodosh, MD,
MSHS2,3,5,*
1
Renaissance School of Medicine, Stony Brook University, Stony Brook, NY, USA. 2Department of Population Health, NYU
Grossman School of Medicine, New York, NY, USA. 3Department of Medicine, NYU Grossman School of Medicine, New
York, NY, USA. 4Department of Nutrition and Food Studies, New York University Steinhardt School of Culture, Education, and
Human Development, New York, NY, USA. 5VA New York Harbor Healthcare System, New York, NY, USA.

*Address correspondence to: Joshua Chodosh, MD, MSHS, FACP, Division of Geriatric Medicine and Palliative Care, NYU Grossman School of
Medicine, 227 E. 30th St. TRB 839, New York, NY 10016, USA. E-mail: joshua.chodosh@nyulangone.org

Received: November 30, 2021; Editorial Decision Date: April 19, 2022

Decision Editor: Patricia C. Heyn, PhD, FGSA, FACRM

Abstract
Background and Objectives:  The rapidly aging and diversifying U.S. population is challenged by increases in prevalence
of Alzheimer’s disease (AD) and aging-related disorders. We conducted a scoping review to assess equitable inclusion of
diverse older adult populations in aging research focused on National Institutes of Health (NIH)-sponsored research.
Research Design and Methods:  The scoping review was conducted following the Preferred Reporting Items for Systematic
Reviews and Meta-Analyses Protocol. The search was limited to NIH-funded studies focusing on aging, AD, and Alzheimer’s
disease-related dementias (ADRD) and included adults aged 55 and older. The priority populations and health disparities put
forth by the National Institute on Aging Health Disparities Framework serve as a model for guiding inclusion criteria and
for interpreting the representation of these underrepresented groups, including racial-ethnic minorities, socioeconomically
disadvantaged, rural populations, groups with disabilities, and lesbian, gay, bisexual, transgender, and queer or questioning
(LGBTQ) communities.
Results:  Our search identified 1,177 records, of which 436 articles were included in the analysis. Inclusion of individuals
with ADRD and mild cognitive impairment, racial-ethnic minorities, rural populations, socioeconomically disadvantaged,
groups with disabilities, and LGBTQ communities were poorly specified in most studies. Studies used multiple recruitment
methods, conducting studies in community settings (59%) and hospitals/clinics (38%) most frequently. Incentives,
convenience factors, and sustained engagement via community-based and care partners were identified as key strategies for
improved retention.
Discussion and Implications: This scoping review identified gaps in existing literature and aims for future work,
including stronger research focus on, better inclusion of, and improved data collection and reporting of older adults from
underrepresented groups.
Keywords:  Minority racial and ethnic groups, Research engagement, Underrepresented

© The Author(s) 2022. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. 1
For permissions, please e-mail: journals.permissions@oup.com.
2 The Gerontologist, 2022, Vol. XX, No. XX

Background and Objectives risk of disease and different barriers to participation due
to socioeconomic and cultural factors. Without targeted
The proportion of the U.S.  population aged 65 and older
and tailored outreach and engagement, these groups are
is projected to increase to 23.4% of the total population
underreached despite meeting research eligibility (Eggly
by 2060, a substantial jump from the 15.2% in 2016 (Lim,
et  al., 2015; Konkel, 2015). This limitation may lead to
Mohaimin et al., 2020; United States Census Bureau, 2017,
biased study findings and scientific errors that overstate
2018). Moreover, racial and ethnic minorities (American
beneficial outcomes for particular populations; however,
Indian/Native Alaskan, Black/African American, Asians,
in clinical practice they may not have the same effect for
Latino/Hispanic, and Native Hawaiian/Pacific Islander) are

Downloaded from https://academic.oup.com/gerontologist/advance-article/doi/10.1093/geront/gnac060/6574426 by guest on 25 July 2022

minoritized groups, thereby limiting medical advancements
the fastest-growing segment of older adults (65 and older),
and research innovations to further health care equity
and will make up nearly 40% of all older Americans by 2050
(Elliot, 2020; Forsat et  al., 2020; Herrera et  al., 2010;
(Federal Interagency Forum on Aging-Related Statistics
Kasenda et  al., 2014; Konkel, 2015; Vellas et  al., 2011).
[FIFAS], 2008; Gelman et al., 2013; Lim, Mohaimin et al.,
Therefore, substantial demographic shifts and greater
2020; Ta Park et  al., 2021; United States Census Bureau,
burdens underscore the need for inclusive and equitable
2017, 2018). These demographic shifts are accompanied by
representation of diverse populations in research to assess
increasing prevalence of aging-associated diseases, such as
the applicability of pertinent therapies, treatments, and pre-
Alzheimer’s disease (AD) and Alzheimer’s disease-related
vention programs.
dementias (ADRD) as well as cardiovascular disease, dia-
Many studies have identified major barriers to research
betes, and cancer (Forsat et  al., 2020; National Research
participation for underrepresented older adults as well as
Council (US) Panel on a Research Agenda and New Data for
specific strategies that have been utilized to address these
an Aging World, 2001). In fact, the population of Americans
barriers (Deane et al., 2020; Forsat et al., 2020; Harawa,
with AD is projected to increase to 14 million and become
2020; Lacey et al., 2017; Marshall et al., 2020; Portacolone
increasingly diverse by the year 2050 (Ta Park et al., 2021).
et  al., 2020; Robison et  al., 2020; Stewart et  al., 2020).
As the proportion of adults aged 65 years and older grows,
Study exclusion criteria, such as age cutoffs and presence
so too will the burden of AD/ADRD and other chronic
of comorbid conditions frequently found in older adults,
diseases (Lim, Chong et al., 2021). Health inequities faced
are commonly cited barriers to recruitment of older adults
by underrepresented groups will be further exacerbated by
(Elliot, 2020; Forsat et al., 2020). Underrepresented older
the higher prevalence of chronic disease and rates of pre-
adults face more specific barriers, including mistrust of
mature death compared with White populations (National
researchers and medical staff. This is a commonly cited
Academies of Sciences et al., 2017). A consideration of so-
barrier especially among African American individuals,
cial determinants of health, such as racial discrimination,
who cite a history of racism in research stemming from
is essential. Epidemiological studies indicate that racial and
the infamous Tuskegee study (Forsat et al., 2020; Gilmore-
ethnic populations, including Black/African Americans and
Bykovskyi et  al., 2019; Portacolone et  al., 2020). Asian
Latino/Hispanics, have a higher prevalence of dementia than
Americans, among others, may hold negative beliefs about
their White counterparts, as well as greater cognitive impair-
AD/ADRD-related research (Lim, Mohaimin et al., 2020).
ment with accelerated decline in cognitive function (Majoka
Socioeconomic barriers, commonly associated with geo-
& Schimming, 2021). Minoritized racial and ethnic status is
graphic strata, and transportation limitations impair par-
inextricably linked with other determinants of food insecu-
ticipation of many diverse populations (Forsat et al., 2020;
rity, poor living situation, inequitable health care access, and
Gilmore et al., 2019).
low socioeconomic status, all of which are also associated
Engaging community-based partners has been identified
with an accelerated decline in cognitive function (Gordon
as a best practice strategy for recruitment and retention,
et al., 2020; Majoka & Schimming, 2021).
and specifically to address issues of mistrust among people
Racial and ethnic minority communities are burdened
from underrepresented communities (Ajrouch et al., 2020;
by environmental and health factors disproportionate to
Deane et  al., 2020; Forsat et  al., 2020; Gilmore et  al.,
nonminority groups; however, there are still many gaps
2019; Lim, Mohaimin et al., 2020; Marshall et al., 2020;
in our understanding of these differences (Konkel, 2015).
Mitchell et  al., 2020; Portacolone et  al., 2020; Ta Park
Older adults and racial and ethnic minorities participate in
et al., 2021). Research recruiters are typically the first point
research studies at levels far below their population preva-
of interaction for those deciding to participate in a re-
lence (Flores et al., 2021; Gilmore-Bykovskyi et al., 2019;
search study. Recruiters who are empathetic, explain study
Herrera et al., 2010; Konkel, 2015; Ortega et al., 2019; Ta
procedures and purpose in plain language, and are able
Park et  al., 2021). For example, Black/African Americans
to build rapport with participants are found to be more
and Latino/Hispanics comprise 30% of the U.S.  popula-
successful in recruiting diverse groups (Forsat et al., 2020;
tion; however, they only make up 6% of all participants in
Gilmore-Bykovskyi et al., 2019; Portacolone et al., 2020).
government-funded clinical trials (Konkel, 2015). Health
Specifically, researchers who are able to speak in a manner
interventions and engagement strategies used for the ge-
with which potential participants are most comfortable
neral population may not be applicable for racial and
or those who are racially and ethnically concordant with
ethnic communities as these communities have a greater
The Gerontologist, 2022, Vol. XX, No. XX
participants can improve recruitment and retention among
people from underrepresented groups (Ajrouch et al., 2020;
Gilmore-Bykovskyi et al., 2019; Portacolone et al., 2020).
The National Institute on Aging (NIA) Health
Disparities Research Framework highlights priority pop-
ulation groups and health disparities, serving as a concep-
tual model to assess the inclusion of minority groups in
research (Hill et al., 2015). To the best of our knowledge,
a limited number of studies have used the NIA Health
Disparities Research Framework to assess the extant lit-
erature on the involvement of underrepresented older
adults in aging and AD/ADRD research. The framework’s
lifecourse perspective also guides indicators and outcome
measures that were interpreted to assess the scope of
population-level health disparities in the older adult pop-
ulation (Hill et  al., 2015). Our work aims to apply this
framework in interpreting the results of a scoping review
of NIH-sponsored research to review the quality and quan-
tity of inclusion of underrepresented older adults in AD/
ADRD and aging research and summarize recruitment and
retention strategies used to achieve inclusion. This scoping
review is part of a larger NIA-funded effort to address
recruitment and retention of older adults from underrep-
resented groups in NIH studies focused on aging, with a
particular focus on AD/ADRD. The objectives of this re-
view are to summarize what is currently known about
inclusion and representation of underrepresented groups,
identify gaps that remain in NIH-sponsored research, and
to inform strategies to achieve equitable inclusion in AD/
ADRD and aging research.
Research Design and Methods
Methodological and Conceptual Design
To examine whether underrepresented older adult
populations in AD/ADRD and aging research are evolving
with current demographic changes, we determined that a
scoping review was a preferable methodological design
compared with a systematic review. This scoping review
follows the methodological framework put forth by Arksey
and O’Malley (2005) and Heyn (2019). Indications for a
scoping review, which are consistent with the goals of this
paper, are to identify gaps in knowledge and literature and
assess the strengths and weaknesses in representation, re-
cruitment, and retention of diverse older adults. Scoping
reviews, unlike systematic reviews, do not critically ap-
praise or answer a specific question, but instead serve to
provide an overview of existing evidence in order to inform
future study goals (Arksey & O’Malley, 2005; Heyn et al.,
2019; Munn et al., 2018).
Inclusion and Exclusion Criteria
The priority populations and health disparities highlighted
by the NIA Health Disparities Research Framework guides
our inclusion criteria for underrepresented groups. This
3
scoping review includes peer-reviewed, completed or in
progress NIH-sponsored, human participants research,
published from January 2000 to February 2020. Studies
with any percentage of NIH funding were included.
Inclusion of studies was indicated by a focus on AD/ADRD
or other aging-related topics, inclusion of diverse racial
and ethnic populations and groups that are underrepre-
sented in research (defined as limited English proficiency,
Downloaded from https://academic.oup.com/gerontologist/advance-article/doi/10.1093/geront/gnac060/6574426 by guest on 25 July 2022
disability status, low-income, low-health literacy, les-
bian, gay, bisexual, transgender, and queer or questioning
(LGBTQ), women, and/or rural), mention of recruitment/
retention efforts, and participation of individuals aged 55
and older. We also included studies that did not report
participants from underrepresented groups in order to
further identify gaps and insight into inclusion, represen-
tation, and reporting of underrepresented older adults in
aging research. Studies were excluded if they were letters
to the editor, based outside of the United States, published
in languages other than English, included only caregivers,
or were classified as secondary data analyses, such as sys-
tematic reviews.
Search Strategy
We conducted the literature search in February 2020 fol-
lowing the Preferred Reporting Items for Systematic
Reviews and Meta-Analyses (PRISMA-Scr) Protocol for
Scoping Reviews (Tricco et  al., 2018). We used PubMed
and Ovid Medline (MEDLINE® 2021 Database Guide.
Ovid Database Guide 2021., n.d.) to ensure complete-
ness (see Appendix [Supplementary Material] for complete
search syntax).
Review Process
To determine study quality and relevance, we used a two-
step screening process supported by Covidence systematic
review software, Veritas Health Innovation (Melbourne,
Australia). The study team screened titles and abstracts to
include NIH-funded, U.S.  human studies that employed
primary data analyses. Reviewers were trained through a
protocol review test of 50 articles to assure high interrater
reliability. Two reviewers reviewed each citation for a deci-
sion on inclusion; disagreements were resolved by a third
party. Two reviewers then reviewed the full text of articles
that passed the initial screening; disagreements were again
resolved by a third party. Reasons for exclusion of citations
at this stage are noted in Figure 1. The data extraction pro-
cess of selected articles consisted of coding each article’s
content for variables of interest using a form developed in
REDCap (Harris et al., 2009).
Outcome measures included both participant charac-
teristics represented in the studies and study characteris-
tics. Participant characteristics included racial and ethnic
categories, income status, cognitive state, disability status,
gender identity or sexual orientation, and rurality. Study
4
Figure 1. PRISMA flow diagram of study selection and inclusion
process.
characteristics included study design, study setting, recruit-
ment strategies, and retention strategies. Data collection
did not include how cognitive state was determined in each
study, but rather its presence or absence of reporting.
Recruitment and Retention
We applied recently published literature from experts
in the field on best practices for recruitment and reten-
tion to probe for these strategies in studies identified in
our scoping review (see Table 1 for related references).
This literature serves as a useful guide for ensuring rep-
resentation of participants from underrepresented groups
but is not included among those studies identified in the
scoping review.
Results
Of the 1,177 citations identified with our literature search,
475 were excluded based on title/abstract, and 266 were
excluded after full article review for reasons listed in Figure
1. Ultimately, 436 were included in this review. The full
bibliography is included in the Appendix (Supplementary
Material). The analysis focused on understanding the ex-
tent of representation of diverse older adults in research
studies funded by the NIH.
Participant Characteristics
The “Racial and Ethnic Categories and Definitions for
NIH Diversity and for Other Reporting Purposes” denotes
the following standardized NIH framework for reporting
racial and ethnic categories: American Indian or Alaska
The Gerontologist, 2022, Vol. XX, No. XX
Native, Asian, Black or African American, Hispanic
or Latino, Native Hawaiian or Other Pacific Islander,
and White (National Institutes of Health [NIH], 2019).
However, not all studies consistently use these categories,
with some reports limiting their descriptions to “White and
Non-White” or “Blacks and Whites.” Racial and ethnic cat-
egory reporting is notably varied across different medical
journals. The data presented here and in Table 2 provide a
Downloaded from https://academic.oup.com/gerontologist/advance-article/doi/10.1093/geront/gnac060/6574426 by guest on 25 July 2022
summary of participant characteristics based on informa-
tion reported in the publications.
We found that 131 (30.0%) studies did not specify ra-
cial categorization of the study population. Of the 305
(69.9%) studies that did specify racial breakdown, 273
(n = 305, 89.5%) reported representation of Blacks/African
Americans, 81 (n = 305, 26.6%) studies reported represen-
tation of Asian American participants, 28 (n = 305, 9.2%)
studies reported representation of Native Hawaiian/Pacific
Islander populations, and 33 (n = 305, 10.8%) studies re-
ported representation of American Indian or Alaska Native
populations.
A majority of studies, 249 (57.1%), also did not specify
study population ethnicity but 159 (36.5%) represented
Latino/Hispanic individuals. Most studies, 233 (53.4%)
did not report income status, but low-income individuals
were included in 174 (39.9%) studies. Even among studies
investigating AD/ADRD topics, most studies, 245 (56.2%)
did not specify whether they included individuals with
AD/ADRD. Just 62 (14.2%) studies reported including
individuals with AD/ADRD and 125 (28.7%) actively
excluded individuals with AD/ADRD in the study popu-
lation. Just under one fifth of the studies (n = 82; 18.8%)
included individuals with mild cognitive impairment in the
study population. These results are displayed in Table 2.
Our review found very few or no studies that focused
on recruiting populations within disparity groups based on
urbanity (specifically rural), disability status, and gender
or sexual orientation. We specifically examined all studies
beginning in 2015 when the NIA first published the NIA
Health Disparities Research Framework for addressing
these specific health disparities and priority populations.
From the subset of studies (n = 105) reviewed since this re-
search framework was published, only two studies reported
on minority sexual orientation, no studies reported on al-
ternative gender identities, three studies reported on rural
groups, and seven studies reported on disability status.
Study Characteristics
Study design
Of the 436 studies reviewed, cross-sectional studies
(n = 137, 31.4%) were most frequent. Randomized control
trials (n  =  99; 22.7%) were the next most frequent, and
cohort (n = 53; 12.2%) and longitudinal (n = 53; 12.2%)
studies were third in frequency. An array of other study
designs were reported less frequently, and included retro-
spective and case–control studies.
The Gerontologist, 2022, Vol. XX, No. XX 5

Table 1.  Summary of Strategies to Address Barriers for Recruitment of Underrepresented Older Adults in Research
Category Barriers or challenges Best practices to address recruitment
Attitudes and Distrust in research or medical staff (Forsat et al., Include racially and ethnically concordant researchers and
perceptions 2020; Gilmore-Bykovskyi et al., 2021; Mitchell recruiters (Gilmore-Bykovskyi et al., 2021; Portacolone
et al., 2020; Portacolone et al., 2020) et al., 2020)
Fear of injury, complication, or invasiveness of Recruiters show empathy and work to build trust and rap-
procedures (Gilmore-Bykovskyi et al., 2021) port with participants (Gilmore-Bykovskyi et al., 2021;
Stigma or negative belief associated with topic (Jang Portacolone et al., 2020)

Downloaded from https://academic.oup.com/gerontologist/advance-article/doi/10.1093/geront/gnac060/6574426 by guest on 25 July 2022

et al., 2018; Lim, Mohaimin et al., 2020) Researchers break down information patiently, clarify
participant confusion, and are explicit and transparent
about research process (Forsat et al., 2020; Mitchell
et al., 2020; Portacolone et al., 2020)
Find community-based partners and liaisons who can be
involved with study planning and connect with members
of underrepresented populations (Ajrouch et al., 2020;
Forsat et al., 2020; Gilmore-Bykovskyi et al., 2021; Lim,
Mohaimin et al., 2020; Marshall et al., 2020; Mitchell
et al., 2020; Portacolone et al., 2020)
Engage researchers who speak language within target
community (Lim, Mohaimin et al., 2020; Ta Park et al.,
2021)
Communication and Receiving insufficient information about study Careful selection of words/languages and semantics
outreach procedures and processes (Gilmore-Bykovskyi et al., (Ajrouch et al., 2020)
2021) Telephone calls and personal mail rather than email or text
Lack of bilingual researchers or translators (Lim, messaging reminders (Forsat et al., 2020; Lacey et al.,
Mohaimin et al., 2020) 2017)
Lack of age-appropriate communication tools (Forsat Use of unique social media platforms used by particular
et al., 2020; Lacey et al., 2017) cultural groups (e.g., Kakao Talk used by many Koreans;
Ta Park et al., 2021)
Ease of explanations: participants can understand research
process and goals (Portacolone et al., 2020)
Outreach and engagement conducted at culturally specific or
familiar community spaces such as grocery stores, festivals,
cultural centers, and spiritual centers (Ta Park et al., 2021)
Researchers break down information patiently, clarify
participant confusion, and are explicit and transparent
about research process (Forsat et al., 2020; Mitchell
et al., 2020; Portacolone et al., 2020)
Find community-based partners and liaisons who can be
involved with study planning and connect with members
of underrepresented populations (Ajrouch et al., 2020;
Forsat et al., 2020; Gilmore-Bykovskyi et al., 2021; Lim,
Mohaimin et al., 2020; Marshall et al., 2020; Mitchell
et al., 2020; Portacolone et al., 2020)
Engage researchers who speak language within target commu-
nity (Lim, Mohaimin et al., 2020; Ta Park et al., 2021)
Cognition and under- Impaired understanding of consent form (Forsat et al., Engage with role of caregiver (Brodaty & Green, 2002;
standing 2020) Gilmore et al., 2019; Portacolone et al., 2020; Tuijt et al.,
Impaired understanding of study and use of tech- 2021; Vick et al., 2018; Wolff et al., 2015, 2017
nology due to problems with cognition, vision, and Utilize the Triadic encounter approach (e.g., 1. participant,
hearing (Lacey et al., 2017) 2. trusted family member or close friend, and 3. recruiter)
for recruitment (Dudley et al., 2015; Wolff & Roter, 2012)
Mobility and access Lack of transportation (Forsat et al., 2020; Gilmore- Provision of transportation for participants (Forsat et al.,
Bykovskyi et al., 2021) 2020; Gilmore-Bykovskyi et al., 2021)
Socioeconomic status associated with geographic Locations and timings of events that are convenient for
strata (Gilmore-Bykovskyi et al., 2021) participants (Gilmore-Bykovskyi et al., 2021)
Participant work schedules (Forsat et al., 2020) Rotating location of events to address residential socioeco-
nomic variation and communities (Ajrouch et al., 2020)
6 The Gerontologist, 2022, Vol. XX, No. XX

Table 1.  Continued

Category Barriers or challenges Best practices to address recruitment
Study design Arbitrary age limits in protocol (Deane et al., 2020; Age range modification based on topic of study (Deane
Forsat et al., 2020) et al., 2020; Forsat et al., 2020)
Deficiency in recruitment procedures (Forsat et al., Test recruitment methods in pilot feasibility studies before
2020; Lacey et al., 2017) implementing on large scale (Stewart et al., 2020)
Falling short of achieving target recruitment numbers Opt-out instead of opt-in recruitment approach (Forsat
for a particular race/ethnicity or socioeconomic et al., 2020)

Downloaded from https://academic.oup.com/gerontologist/advance-article/doi/10.1093/geront/gnac060/6574426 by guest on 25 July 2022

status (Stewart et al., 2020)
Incentive Socioeconomic status and financial barriers (Forsat
et al., 2020; Gilmore-Bykovskyi et al., 2021)
Seeing no relevance or benefit of conducting
study (Forsat et al., 2020; Gilmore et al., 2019;
Portacolone et al., 2020; Ta Park et al., 2021)
Open randomized study instead of blinded randomized
study (Deane et al., 2020; Forsat et al., 2020)
Educational statements about research topic and how par-
ticipation will help members of their own communities
(Forsat et al., 2020; Gilmore-Bykovskyi et al., 2021;
Portacolone et al., 2020)
Monetary incentive or provision of payment (Forsat et al.,
2020; Gilmore-Bykovskyi et al., 2021)
Utilize existing database of volunteers who may already
understand value of research (Deane et al., 2020; Forsat
et al., 2020; Jang et al., 2018)
Use of personal stories and narratives and pictures to evoke
emotional response (Ta Park et al., 2021)

Table 2.  Summary of Participant Characteristics as Reported Recruitment strategies

in Individual Studies (n = 436) Expert perspectives on recommended strategies leading
to successful recruitment of participants from racial and
Characteristic Number of studiesa
ethnic minorities were derived from recently published
Minority race reviews (not included among studies in the scoping re-
  Blacks/African Americans 273 view analysis) and are summarized in Table 1. These best
  Native Hawaiian/Pacific Islanders 28 practices address barriers concerning participant attitudes
  American Indians/Alaska Natives 33 and perceptions, communication and outreach, cogni-
 Asians 81 tion and understanding, mobility and access, study de-
  Not reported 131 sign, and incentives. Some recommended strategies are
Ethnicity inclusion of racially and ethnically concordant researchers
 Latino/Hispanic 159 who can speak the language that desired participants are
  Not reported 249 most comfortable with (Gilmore-Bykovskyi et  al., 2019;
Cognitive state Lim, Mohaimin et  al., 2020; Portacolone et  al., 2020;
  Participants with AD/ADRD 62 Ta Park et  al., 2021), engaging community-based part-
  Participants with mild cognitive impairment 82 ners for recruitment and retention (Ajrouch et  al., 2020;
  Participants with AD/ADRD who were 125 Forsat et al., 2020; Gilmore-Bykovskyi et al., 2019; Lim,
actively excluded Mohaimin et  al., 2020; Marshall et  al., 2020; Mitchell
  Cognitive state not reported 245 et al., 2020; Portacolone et al., 2020), and using an empa-
Socioeconomic status
thetic and understanding approach from researchers that
 Low-income 174
allows for open communication with participants (Forsat
  Income status not reported 233
et  al., 2020; Gilmore-Bykovskyi et  al., 2019; Mitchell
et al., 2020; Portacolone et al., 2020). Engaging with the
Note: AD  =  Alzheimer’s disease; ADRD  =  Alzheimer’s disease-related
dementias. care partner during the consent process, providing trans-
a
The number of studies including these characteristics only accounts for what portation for participants, and adapting study design to
was reported, and may not necessarily reflect inclusion that was not reported appropriately expand inclusion criteria are additionally
by studies. highlighted recruitment strategies (Ajrouch et  al., 2020;
Brodaty & Green, 2002; Deane et al., 2020; Forsat et al.,
Study setting 2020; Gilmore et  al., 2019; Gilmore-Bykovskyi et  al.,
Of the studies included in the review, the study setting was 2019; Portacolone et al., 2020).
classified as either “community-based” for 257 (59.0%) Studies included in this scoping review used multiple
studies, “hospital-/clinic-based” for 167 (38.3%), or recruitment methods, many incorporating the successful
“population-based” for 84 (19.3%), with some studies in- strategies noted previously. Almost half of all studies relied
clusive of more than one setting. on personal interactions in community settings (n  =  198;
The Gerontologist, 2022, Vol. XX, No. XX 7

45.4%). The next most commonly reported strategy was
recruiting hospital- and clinic-affiliated patients (n = 192;
44.0%). Social media, including news-based media, tel-
evision broadcasts, telephone calls, and e-mail, was used
in 132 (30.3%) studies. One hundred fourteen (26.1%)
studies utilized patient registries or existing databases to
recruit participants. Some studies recruited participants
via traditional mailing (n  =  72; 16.5%) and from reli-
et al., 2020; Forsat et al., 2020; Gilmore-Bykovskyi et al.,
2021; Lim, Mohaimin et al., 2020; Marshall et al., 2020;
Mitchell et al., 2020; Portacolone et al., 2020); collecting
regular feedback from participants (Forsat et  al., 2020);
continuing to provide translations or translators to com-
plete follow-up questionnaires and tests (Ajrouch et  al.,
2020); providing advance notification before sending fol-
low-up questionnaires (Forsat et  al., 2020); displaying

Downloaded from https://academic.oup.com/gerontologist/advance-article/doi/10.1093/geront/gnac060/6574426 by guest on 25 July 2022

gious settings (n = 46; 11.7%). Only five studies explicitly appreciation for participants (Forsat et al., 2020); and con-
mentioned involvement of care partners in the recruitment tinuing provision of payment or monetary incentive (Forsat
process. These results are outlined in Table 3. et al., 2020).

Retention strategies
Following successful recruitment, continued engagement Discussion and Implications
with participants is critical for maintaining racial and ethnic This scoping review sought to characterize the current state
minority participant representation. Retention strategies of NIH-sponsored research by summarizing the extant lit-
highlighted in prior literature include: maintaining positive erature available on the engagement of older adults from
relationships between researchers and participants (Forsat underrepresented groups in aging and AD/ADRD research.
et  al., 2020); updating participants on study progression To the best of our knowledge, this is the first review of
and results (Forsat et al., 2020; Gilmore-Bykovskyi et al., its kind.
2021; Portacolone et  al., 2020); maintaining high con- This review identified critical gaps in inclusion of
tact with participants, care partners and/or caregivers, and participants from underrepresented groups and a lack of
community-based partners (Ajrouch et  al., 2020; Deane detail to better characterize study populations. Our review
also highlights the paucity of details on recruitment and
retention strategies. Improvements in research reporting
Table 3.  Summary of Study Characteristics (n = 436) are a necessary first step to advance equitable inclusion
Characteristic Number of studiesa (%) in research studies and to improve our efforts in recruit-
ment and retention. We sought to identify inclusion of
Study design participants from groups specifically identified in the NIA
 Cross-sectional 137 (31.4%) Health Disparities Research Framework––racial and ethnic
  Randomized controlled trials 99 (22.7%) minorities, cognitively impaired participants and caregivers,
  Cohort studies 53 (12.2%) disabled populations, rural populations, LGBTQ and alter-
  Longitudinal studies 53 (12.2%) native gender identity and sexual orientation populations,
  Qualitative studies 36 (8.3%) and diverse socioeconomic classes. The paucity of data on
 Other 58 (13.3%) certain underrepresented groups may represent either a def-
Study setting
icit in inclusion or representation, a lack of studies focused
 Community-based 257 (59.0%)
on these populations, or an absence of reporting.
 Hospital-/clinic-based 167 (38.3%)
As noted previously, the NIH outlines specific racial and
 Population-basedb 84 (19.3%)
ethnic category reporting guidelines (NIH, 2019). Several
Recruitment strategy
studies in this scoping review reported categories that were
  Community settings 198 (45.4%)
not in alignment with these guidelines. In fact, many studies
  Hospital- and clinic-affiliated 192 (44.0%)
 Media-based 132 (30.3%)
reported dichotomous categories such as “White and Non-
  Patient registries and existing databases 114 (26.1%) White” or “White and Black.” These limited categorizations
  Traditional mailing 72 (16.5%) make it difficult to determine actual representativeness.
  Religious settings 46 (11.7%) Native Hawaiian/Pacific Islander, Asian Americans, and
Retention strategies American Indian or Alaska Native populations were not
 Incentives 70 (16.1%) well-represented despite being among the fastest-growing
  Participant connection 70 (16.1%) groups in the United States (Lim, Chong et al., 2021). Over
  Participant convenience factors 50 (11.5%) half of included studies did not specify racial and ethnic
  Community involvement 15 (3.4%) characteristics of the study population. Inclusivity cannot
be measured or monitored without such characterization
Note:  and study generalizations are not possible without this in-
a
Studies reported multiple strategies, thus the sum of studies reviewed do not formation. This scoping review has captured current limita-
sum to the total number of studies reviewed.
tions and the diverse ways in which articles report on racial
b
Population-based study settings were epidemiological studies in which a de-
fined study population was followed and observed longitudinally to assess and ethnic categories, and underscores the need to improve
exposure and outcome relationships. the collection and standardization of reporting.
8
Moreover, individual studies did not provide suffi-
cient level of detail regarding age, further limiting analysis
of results by age category. Most articles noted mean age
rather than a breakdown by age category. This hindered
our ability to examine which age categories, within the
older age group, were represented.
A majority of studies did not specify inclusion/exclu-
sion of participants with AD/ADRD, cognitive state, or
the involvement of care partners in the recruitment and
retention stages. Where specified, these studies were few
in number. Ethical challenges related to managing ca-
pacity for participant consent or the need to involve care
partners present barriers to participation (Gelman et  al.,
2013). Likely adding to the challenges of participant re-
cruitment are clinicians’ and researchers’ reported lack
of confidence in communicating with people living with
dementia (Alzheimer, 2019; Tuijt et  al., 2021). In the
presence of care partners, patient–provider and patient–
researcher interactions can create complexity in commu-
nication strategies; requiring a care partner in studies may
create a barrier to participation especially where patients
might not require a proxy. However, care partners or
proxy informants are relied upon for establishing a diag-
nosis. Greater involvement of care partners may improve
participant comfort, communication (especially with lan-
guage differences), and can offer a trustworthy party who
can relay concerns or questions to researchers (Brodaty &
Green, 2002).
A majority of the studies reviewed did not include infor-
mation on participant income status. Populations of lower
socioeconomic status, often times uninsured and minority
populations, have historically been underrepresented in clin-
ical trials, leading to limited knowledge on the impact of
certain therapies for these populations (Murthy et al., 2004;
Nipp et  al., 2019; Talarico et  al., 2004; Townsley et  al.,
2005; Umutyan et  al., 2008). Information on income and
socioeconomic status could better inform what strategies of
recruitment and retention are most effective and beneficial
for supporting participants. While incentives in the form
of monetary payments are a popular engagement strategy,
adjusting study accessibility in terms of transportation and
convenience might be more impactful (Forsat et  al., 2020;
Gilmore et  al., 2019). For those within a lower socioeco-
nomic group, participating in research may be prevented
by transportation costs and event timings that conflict with
work schedules (Forsat et al., 2020; Gilmore-Bykovskyi et al.,
2021). Strategies to make participation more accessible in-
clude provision of transportation, providing event locations
and timings that are convenient according to work schedule,
and rotating location of events to address socioeconomic-
related variation in geographic settings (Ajrouch et al., 2020;
Forsat et al., 2020; Gilmore-Bykovskyi et al., 2021).
Reported recruitment and retention strategies relied
heavily on recruiting from community settings, hospitals,
and clinics. Recruitment from trusted community spaces
was a best practice strategy used to address mistrust,
The Gerontologist, 2022, Vol. XX, No. XX
misperceptions, and misunderstandings. Recruitment in
hospitals and clinical settings provided a convenience factor
and referral by one’s health care provider was cited as a
strong incentive. Also important to note is that differing re-
ferral sources (e.g., primarily community vs. clinic-based) by
racial/ethnic subgroup could result in selection bias if the
systematic differences in recruitment source are associated
with the exposure and outcome of interest (Gleason et al.,
Downloaded from https://academic.oup.com/gerontologist/advance-article/doi/10.1093/geront/gnac060/6574426 by guest on 25 July 2022
2019). Retention strategies for a majority of studies were
not reported. In studies where retention strategies could
be assessed, monetary compensation and maintaining par-
ticipant connections by updates and involvement in study
process were seen as effective. While this scoping review
identified the most commonly used recruitment and retention
strategies in these NIH-sponsored studies, we were unable to
assess which of the reported strategies were most effective.
As racial and ethnic populations face differing barriers to
access health care services and research, further study is nec-
essary to investigate outcomes of targeted recruitment and
retention strategies by subgroups and different populations.
Limitations
Our scoping review has several limitations. First, this review
was limited to NIH-sponsored studies to inform a research
collaborative funded by the NIA. We acknowledge that this
framing may have limited generalizability of findings as
studies funded by other institutes or agencies might pro-
vide additional insight into the barriers and strategies for
engaging diverse older adults in aging research. Participant
diversity was analyzed from reported data, but might
not reflect actual inclusion of participants from diverse
populations. Nonetheless, we present a comprehensive
scoping review of NIH-sponsored work, the largest funder
of aging and AD/ADRD research. We identify critical liter-
ature gaps, including opportunities to improve data collec-
tion and reporting, which is needed to improve equitable
inclusion of older adults from underrepresented groups.
Conclusions
Improved engagement of diverse older adults in research
is critical to achieving broadly applicable evidence. This
scoping review has identified gaps in reporting of critical
information regarding participant characteristics that can
serve as a barrier to generalizing study findings. Future
work should aim to (a) prioritize research to focus on under-
represented older adult groups including racial and ethnic
minorities, LGBTQ and alternative gender and sexual iden-
tity groups, rural populations, low-socioeconomic status
groups, disabled populations, and cognitively impaired
populations and caregivers; (b) improve collection and re-
porting of participant characteristics for aforementioned
groups; (c) assess proportional extent of participation
for specific racial and ethnic groups; and (d) investigate
The Gerontologist, 2022, Vol. XX, No. XX
outcomes of commonly used and targeted recruitment and
retention strategies for aforementioned groups.
Future Work and Implications
Consistent with the aims of a scoping review to highlight
gaps in extant literature and inform areas of future work
(Heyn et al., 2019), this review motivates numerous areas
of future research. It is important to note that our study
sought to investigate the extent of representation of un-
derrepresented populations. Given the paucity of studies
including participants from these groups, future work
should focus on the intersectionality of the many factors
associated with underrepresentation in research (e.g., ge-
ography, disability, gender, and income) irrespective of
funding source. Additional work should also investigate re-
cruitment and retention outcomes using different strategies
applied to specific racial and ethnic groups. Such work
will help researchers strive toward equitable inclusion of
diverse older adults in aging and AD/ADRD research and
advance population health outcomes.
Supplementary Material
Supplementary data are available at The Gerontologist online.
Funding
This project was funded by the National Institute on Aging
sponsored Engagement and Longevity in Medicine Initiative
(R24AG06372 to J. Chodosh, S. E. Sherman, C. Trinh-Shevrin, S. C.
Kwon, J.  M. Beasley, and J.  Smilowitz), the National Center for
Advancing Translational Sciences sponsored Clinical Translational
Science Award (UL1TR001445 to S. E. Sherman and S. C. Kwon),
the National Institute on Aging Academic Leadership Award
(K07AG068186 to C.  Trinh-Shevrin), the Centers For Disease
Control and Prevention sponsored NYU BOLD Public Health Center
of Excellence on Early Detection of Dementia (NU58DP006911
to J.  Chodosh, C.  Trinh-Shevrin, and S.  C. Kwon), the National
Institute on Aging sponsored NYU Alzheimer’s Disease Research
Center (1P30AG066512-01 to J.  Chodosh), the National Institute
of Diabetes and Digestive and Kidney Diseases Summer Research
Fellowship for MD Students (5T35DK007421 to N. Godbole), and
R01 (R01DK127916 to J. M. Beasley and J. Chodosh). The content
is solely the responsibility of the authors and does not necessarily
represent the official views of the National Institutes of Health or the
Centers For Disease Control and Prevention.
Conflict of Interest
None declared.
Acknowledgments
The authors would like to thank Annalie Brody, Lena Finucane,
Arlene Hernandez, Diana Hernandez, Daniel Chong, and Jade
Refuerzo for their contributions to the project.
9
References
Ajrouch, K. J., Vega, I. E., Antonucci, T. C., Tarraf, W., Webster, N. J.,
& Zahodne, L. B. (2020). Partnering with middle Eastern/Arab
American and Latino immigrant communities to increase partic-
ipation in Alzheimer’s disease research. Ethnicity and Disease,
30(Suppl 2), 765–774. doi:10.18865/ed.30.S2.765
Alzheimer’s Association. (2019). 2019 Alzheimer’s disease facts
and figures. Alzheimer’s and Dementia, 15(3), 321–387.
Downloaded from https://academic.oup.com/gerontologist/advance-article/doi/10.1093/geront/gnac060/6574426 by guest on 25 July 2022
doi:10.1016/j.jalz.2019.01.010
Arksey, H., & O’Malley, L. (2005). Scoping studies: Towards a meth-
odological framework. International Journal of Social Research
Methodology, 8(1), 19–32. doi:10.1080/1364557032000119616
Brodaty, H., & Green, A. (2002). Defining the role of the caregiver
in Alzheimer’s disease treatment. Drugs and Aging, 19(12), 891–
898. doi:10.2165/00002512-200219120-00001
Deane,  C.  S., Phillips,  B.  E., Smith,  K., Steele,  A.  M., Libretto,  T.,
Statton, S. A., Atherton, P. J., & Etheridge, T. (2020). Challenges
and practical recommendations for successfully recruiting in-
active, statin-free older adults to clinical trials. BMC Research
Notes, 13(1), 174. doi:10.1186/s13104-020-05017-1
Dudley,  L., Gamble,  C., Preston,  J., Buck,  D., Hanley,  B.,
Williamson,  P., & Young,  B. (2015). What difference does pa-
tient and public involvement make and what are its pathways to
impact? Qualitative study of patients and researchers from a co-
hort of randomised clinical trials. PLoS One, 10(6), e0128817.
doi:10.1371/journal.pone.0128817
Eggly, S., Barton, E., Winckles, A., Penner, L. A., & Albrecht, T. L.
(2015). A disparity of words: Racial differences in oncologist-
patient communication about clinical trials. Health Expectations,
18(5), 1316–1326. doi:10.1111/hex.12108
Elliot, C. (2020). Together we make the difference: National strategy
for recruitment and participation in Alzheimer’s and related
dementias clinical research. Ethnicity & Disease, 30(Suppl),
705–708. doi:10.18865/ed.30.S2.705
Federal Interagency Forum on Aging-Related Statistics [FIFAS].
(2008). Older Americans 2008: Key indicators of well-being.
https://nepis.epa.gov/Exe/ZyNET.exe/P1001XK3.TXT?ZyAction
D=ZyDocument&Client=EPA&Index=2006+Thru+2010&Doc
s=&Query=&Time=&EndTime=&SearchMethod=1&TocRestri
ct=n&Toc=&TocEntry=&QField=&QFieldYear=&QFieldMont
h=&QFieldDay=&IntQFieldOp=0&ExtQFieldOp=0&XmlQue
ry=&File=D%3A%5Czyfiles%5CIndex%20Data%5C06thru10
%5CTxt%5C00000005%5CP1001XK3.txt&User=ANONYM
OUS&Password=anonymous&SortMethod=h%7C-&Maximu
mDocuments=1&FuzzyDegree=0&ImageQuality=r75g8/r75g8/
x150y150g16/i425&Display=hpfr&DefSeekPage=x&SearchBac
k=ZyActionL&Back=ZyActionS&BackDesc=Results%20page&
MaximumPages=1&ZyEntry=1&SeekPage=x&ZyPURL
Flores, L. E., Frontera, W. R., Andrasik, M. P., del Rio, C., Mondríguez-
González,  A., Price,  S.  A., Krantz,  E.  M., Pergam,  S.  A., &
Silver, J. K. (2021). Assessment of the inclusion of racial/ethnic
minority, female, and older individuals in vaccine clinical trials.
Journal of the American Medical Association Network Open,
4(2), e2037640. doi:10.1001/jamanetworkopen.2020.37640
Forsat, N. D., Palmowski, A., Palmowski, Y., Boers, M., & Buttgereit, F.
(2020). Recruitment and retention of older people in clinical re-
search: A  systematic literature review. Journal of the American
Geriatrics Society, 68(12), 2955–2963. doi:10.1111/jgs.16875
10
Gelman,  C., Faul,  A.  C., & Yankeelov,  P.  A. (2013). Intervention
research with minority older adults: Challenges
encountered, solutions enacted, and implications for fu-
ture work. Journal of Applied Gerontology, 32(2), 207–225.
doi:10.1177/0733464811416812
Gilmore,  N.  J., Canin,  B., Whitehead,  M., Sedenquist,  M.,
Griggs,  L., Finch,  L., Grossman,  V., Targia,  V., Wells,  M.,
Kamen, C., Flannery, M., Magnuson, A., Plumb, S., Obrecht, S.,
Lowenstein,  L.  M., Lopez,  G., Anderson,  J., Berenberg,  J.,
Vogel,  V., & Mohile,  S.  G. (2019). Engaging older patients
with cancer and their caregivers as partners in cancer research.
Cancer, 125(23), 4124–4133. doi:10.1002/cncr.32402
Gilmore-Bykovskyi,  A., Croff,  R., Glover,  C.  M., Jackson,  J.  D.,
Resendez,  J., Perez,  A., Zuelsdorff,  M., Green-Harris,  G., &
Manly,  J.  J. (2021). Traversing the aging research and health
equity divide: Toward intersectional frameworks of research
justice and participation. The Gerontologist, 62(5), 711–720.
doi:10.1093/geront/gnab107
Gilmore-Bykovskyi, A. L., Jin, Y., Gleason, C., Flowers-Benton, S.,
Block, L. M., Dilworth-Anderson, P., Barnes, L. L., Shah, M. N.,
& Zuelsdorff, M. (2019). Recruitment and retention of under-
represented populations in Alzheimer’s disease research: A sys-
tematic review. Alzheimer’s and Dementia (New York, N. Y.), 5,
751–770. doi:10.1016/j.trci.2019.09.018
Gleason,  C.  E., Norton,  D., Zuelsdorff,  M., Benton,  S.  F.,
Wyman,  M.  F., Nystrom,  N., Lambrou,  N., Salazar,  H.,
Koscik, R. L., Jonaitis, E., Carter, F., Harris, B., Gee, A., Chin, N.,
Ketchum,  F., Johnson,  S.  C., Edwards,  D.  F., Carlsson,  C.  M.,
Kukull,  W., & Asthana,  S. (2019). Association between enroll-
ment factors and incident cognitive impairment in Blacks and
Whites: Data from the Alzheimer’s disease center. Alzheimer’s and
Dementia, 15(12), 1533–1545. doi:10.1016/j.jalz.2019.07.015
Gordon,  N.  P., Banegas,  M.  P., & Tucker-Seeley,  R.  D. (2020).
Racial-ethnic differences in prevalence of social determinants of
health and social risks among middle-aged and older adults in a
Northern California health plan. PLoS One, 15(11), e0240822.
doi:10.1371/journal.pone.0240822
Harawa, N. T. (2020). Lessons from my elders on recruitment and
retention into health research. Ethnicity and Disease, 30(Suppl
2), 781–784. doi:10.18865/ed.30.S2.781
Harris,  P.  A., Taylor,  R., Thielke,  R., Payne,  J., Gonzalez,  N.,
& Conde,  J.  G. (2009). Research Electronic Data Capture
(REDCap)—A metadata-driven methodology and workflow
process for providing translational research informatics sup-
port. Journal of Biomedical Informatics, 42(2), 377–381.
doi:10.1016/j.jbi.2008.08.010
Herrera,  A.  P., Snipes,  S.  A., King,  D.  W., Torres-Vigil,  I.,
Goldberg, D. S., & Weinberg, A. D. (2010). Disparate inclusion
of older adults in clinical trials: Priorities and opportunities for
policy and practice change. American Journal of Public Health,
100(Suppl 1), S105–S112. doi:10.2105/AJPH.2009.162982
Heyn, P. C., Meeks, S., & Pruchno, R. (2019). Methodological guid-
ance for a quality review article. The Gerontologist, 59(2), 197–
201. doi:10.1093/geront/gny123
Hill, C., Pérez-Stable, E., Anderson, N., & Bernard, M. A. (2015).
The national institute on aging health disparities research frame-
work. Ethnicity and Disease, 25(3), 245–254. doi:10.18865/
ed.25.3.245
The Gerontologist, 2022, Vol. XX, No. XX
Jang,  Y., Yoon,  H., Park,  N.  S., Rhee,  M.  K., & Chiriboga,  D.  A.
(2018). Asian Americans’ concerns and plans about Alzheimer’s
disease: The role of exposure, literacy and cultural beliefs.
Health and Social Care in the Community, 26(2), 199–206.
doi:10.1111/hsc.12509
Kasenda,  B., von  Elm,  E., You,  J., Blümle,  A., Tomonaga,  Y.,
Saccilotto,  R., Amstutz,  A., Bengough,  T., Meerpohl,  J.  J.,
Stegert,  M., Tikkinen,  K.  A.  O., Neumann,  I., Carrasco-
Labra,  A., Faulhaber,  M., Mulla,  S.  M., Mertz,  D., Akl,  E.  A.,
Downloaded from https://academic.oup.com/gerontologist/advance-article/doi/10.1093/geront/gnac060/6574426 by guest on 25 July 2022
Bassler,  D., Busse,  J.  W., & Briel,  M. (2014). Prevalence, char-
acteristics, and publication of discontinued randomized trials.
Journal of the American Medical Association, 311(10), 1045–
1051. doi:10.1001/jama.2014.1361
Konkel, L. (2015). Racial and ethnic disparities in research studies:
The challenge of creating more diverse cohorts. Environmental
Health Perspectives, 123(12), A297–A302. doi:10.1289/
ehp.123-A297
Lacey, R. J., Wilkie, R., Wynne-Jones, G., Jordan, J. L., Wersocki, E.,
& McBeth, J. (2017). Evidence for strategies that improve re-
cruitment and retention of adults aged 65  years and over in
randomised trials and observational studies: A  systematic re-
view. Age and Ageing, 46(6), 895–903. doi:10.1093/ageing/
afx057
Lim,  S., Chong,  S., Min,  D., Mohaimin,  S., Roberts,  T.,
Trinh-Shevrin,  C., & Kwon,  S.  C. (2021). Alzheimer’s di-
sease screening tools for Asian Americans: A  scoping re-
view. Journal of Applied Gerontology, 40(10), 1389–1398.
doi:10.1177/0733464820967594
Lim, S., Mohaimin, S., Min, D., Roberts, T., Sohn, Y. J., Wong, J.,
Sivanesathurai,  R., Kwon,  S.  C., & Trinh-Shevrin,  C. (2020).
Alzheimer’s Disease and its related dementias among Asian
Americans, native hawaiians, and pacific islanders: A scoping
review. Journal of Alzheimer’s Disease, 77(2), 523–537.
doi:10.3233/JAD-200509
Majoka, M. A., & Schimming, C. (2021). Effect of social determinants
of health on cognition and risk of Alzheimer Disease and related
dementias. Clinical Therapeutics, 43(6), 922–929. doi:10.1016/j.
clinthera.2021.05.005
Marshall,  L.  W., Carrillo,  C.  A., Reyes,  C.  E., Thorpe,  C.  L.,
Trejo,  L., & Sarkisian,  C. (2020). Evaluation of recruitment
of older adults of color into a community-based chronic di-
sease self-management wellness pathway program in Los
Angeles County. Ethnicity and Disease, 30(Suppl 2), 735–744.
doi:10.18865/ed.30.S2.735
MEDLINE® 2021 database guide. Ovid database guide 2021.
(n.d.). Retrieved September 29, 2021, from https://ospguides.
ovid.com/OSPguides/medline.htm
Mitchell,  J., Perry,  T., Rorai,  V., Ilardo,  J., Lichtenberg,  P.  A., &
Jackson,  J.  S. (2020). Building and Sustaining a Community
Advisory Board of African American older adults as the foun-
dation for volunteer research recruitment and retention in
health sciences. Ethnicity and Disease, 30(Suppl 2), 755–764.
doi:10.18865/ed.30.S2.755
Munn, Z., Peters, M. D. J., Stern, C., Tufanaru, C., McArthur, A.,
& Aromataris, E. (2018). Systematic review or scoping review?
Guidance for authors when choosing between a systematic or
scoping review approach. BMC Medical Research Methodology,
18(1), 143. doi:10.1186/s12874-018-0611-x
The Gerontologist, 2022, Vol. XX, No. XX
Murthy, V. H., Krumholz, H. M., & Gross, C. P. (2004). Participation
in cancer clinical trials: Race-, sex-, and age-based disparities.
Journal of the American Medical Association, 291(22), 2720–
2726. doi:10.1001/jama.291.22.2720
National Academies of Sciences, Engineering, and Medicine; Health
and Medicine Division; Board on Population Health and Public
Health Practice; Committee on Community-Based Solutions to
Promote Health Equity in the United States. (2017). The state of
health disparities in the United States. In A. Baciu, Y. Negussie,
A.  Geller, & J.  N. Weinstein (Eds.), Communities in action:
Pathways to health equity. National Academies Press. http://
www.ncbi.nlm.nih.gov/books/NBK425844/
National Research Council (US) Panel on a Research Agenda and
New Data for an Aging World. (2001). Preparing for an aging
world: The case for cross-national research. National Academies
Press. http://www.ncbi.nlm.nih.gov/books/NBK98379/
Nipp,  R.  D., Hong,  K., & Paskett,  E.  D. (2019). Overcoming
barriers to clinical trial enrollment. American Society of Clinical
Oncology Educational Book, 39, 105–114. doi:10.1200/
EDBK_243729
National Institutes of Health (NIH). (2019). NOT-OD-15-089:
Racial and Ethnic Categories and Definitions for NIH Diversity
Programs and for Other Reporting Purposes. (2015). https://
grants.nih.gov/grants/guide/notice-files/NOT-OD-20-031.
html
Ortega,  R.  F., Yancy,  C.  W., Mehran,  R., & Batchelor,  W. (2019).
Overcoming lack of diversity in cardiovascular clinical trials:
A new challenge and strategies for success. Circulation, 140(21),
1690–1692. doi:10.1161/CIRCULATIONAHA.119.041728
Portacolone,  E., Palmer,  N.  R., Lichtenberg,  P., Waters,  C.  M.,
Hill, C. V., Keiser, S., Vest, L., Maloof, M., Tran, T., Martinez, P.,
Guerrero,  J., & Johnson,  J.  K. (2020). Earning the trust of
African American communities to increase representation in de-
mentia research. Ethnicity and Disease, 30(Suppl 2), 719–734.
doi:10.18865/ed.30.S2.719
Robison,  J., Powell,  W., & Kenyon-Pesce,  L. (2020). Practical
guidance for recruiting older adults in clinical research:
Building on principles of social justice and equity. Journal
of the American Geriatrics Society, 68(12), 2757–2758.
doi:10.1111/jgs.16873
Stewart,  A.  L., Nápoles,  A.  M., Piawah,  S., Santoyo-Olsson,  J., &
Teresi, J. A. (2020). Guidelines for evaluating the feasibility of re-
cruitment in pilot studies of diverse populations: An overlooked
but important component. Ethnicity and Disease, 30(Suppl 2),
745–754. doi:10.18865/ed.30.S2.745
Ta  Park,  V., Grill,  J.  D., Zhu,  J., Nguyen,  K., Nam,  B., Tsoh,  J.,
Kanaya, A., Vuong, Q., Bang, J., Nguyen, N. C. Y., Cho, I. H.,
Gallagher-Thompson, D., Hinton, L., & Meyer, O. L. (2021). Asian
Americans and Pacific Islanders’ perspectives on participating in
the CARE recruitment research registry for Alzheimer’s disease
and related dementias, aging, and caregiving research, Alzheimer’s
and Dementia, 7(1), e12195. doi:10.1002/trc2.12195
Talarico,  L., Chen,  G., & Pazdur,  R. (2004). Enrollment of eld-
erly patients in clinical trials for cancer drug registration:
A  7-year experience by the US Food and drug administration.
11
Journal of Clinical Oncology, 22(22), 4626–4631. doi:10.1200/
JCO.2004.02.175
Townsley,  C.  A., Selby,  R., & Siu,  L.  L. (2005). Systematic review
of barriers to the recruitment of older patients with cancer onto
clinical trials. Journal of Clinical Oncology, 23(13), 3112–3124.
doi:10.1200/JCO.2005.00.141
Tricco, A. C., Lillie, E., Zarin, W., O’Brien, K. K., Colquhoun, H.,
Levac,  D., Moher,  D., Peters,  M.  D.  J., Horsley,  T., Weeks,  L.,
Hempel,  S., Akl,  E.  A., Chang,  C., McGowan,  J., Stewart,  L.,
Downloaded from https://academic.oup.com/gerontologist/advance-article/doi/10.1093/geront/gnac060/6574426 by guest on 25 July 2022
Hartling,  L., Aldcroft,  A., Wilson,  M.  G., Garritty,  C., &
Straus,  S.  E. (2018). PRISMA Extension for Scoping Reviews
(PRISMA-ScR): Checklist and explanation. Annals of Internal
Medicine, 169(7), 467–473. doi:10.7326/M18-0850
Tuijt,  R., Rees,  J., Frost,  R., Wilcock,  J., Manthorpe,  J., Rait,  G.,
& Walters,  K. (2021). Exploring how triads of people living
with dementia, carers and health care professionals func-
tion in dementia health care: A  systematic qualitative re-
view and thematic synthesis. Dementia, 20(3), 1080–1104.
doi:10.1177/1471301220915068
Umutyan, A., Chiechi, C., Beckett, L. A., Paterniti, D. A., Turrell, C.,
Gandara, D. R., Davis, S. W., Wun, T., Chen, M. S., & Lara, P. N.
(2008). Overcoming barriers to cancer clinical trial accrual.
Cancer, 112(1), 212–219. doi:10.1002/cncr.23170
United States Census Bureau. (2017). 2017 National population
projections tables: Main series. https://www.census.gov/data/ta-
bles/2017/demo/popproj/2017-summary-tables.html
United States Census Bureau. (2018). An aging nation: Projected
number of children and older adults. https://www.census.gov/
library/visualizations/2018/comm/historic-first.html
Vellas,  B., Pesce,  A., Robert,  P.  H., Aisen,  P.  S., Ancoli-Israel,  S.,
Andrieu, S., Cedarbaum, J., Dubois, B., Siemers, E., Spire, J. P.,
Weiner,  M.  W., & May,  T.  S. (2011). AMPA workshop on
challenges faced by investigators conducting Alzheimer’s di-
sease clinical trials. Alzheimer’s and Dementia, 7(4), e109–e117.
doi:10.1016/j.jalz.2010.05.2020
Vick,  J.  B., Amjad,  H., Smith,  K.  C., Boyd,  C.  M., Gitlin,  L.  N.,
Roth, D. L., Roter, D. L., & Wolff, J. L. (2018). “Let him speak:”
a descriptive qualitative study of the roles and behaviors of
family companions in primary care visits among older adults
with cognitive impairment. International Journal of Geriatric
Psychiatry, 33(1), e103–e112. doi:10.1002/gps.4732
Wolff, J. L., Clayman, M. L., Rabins, P., Cook, M. A., & Roter, D. L.
(2015). An exploration of patient and family engagement in rou-
tine primary care visits. Health Expectations, 18(2), 188–198.
doi:10.1111/hex.12019
Wolff, J. L., Guan, Y., Boyd, C. M., Vick, J., Amjad, H., Roth, D. L.,
Gitlin, L. N., & Roter, D. L. (2017). Examining the context and
helpfulness of family companion contributions to older adults’
primary care visits. Patient Education and Counseling, 100(3),
487–494. doi:10.1016/j.pec.2016.10.022
Wolff,  J.  L., & Roter,  D.  L. (2012). Older adults’ mental health
function and patient-centered care: Does the presence of a
family companion help or hinder communication? Journal
of General Internal Medicine, 27(6), 661–668. doi:10.1007/
s11606-011-1957-5