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Abstract

French

Objective

Even with recruitment efforts for racial and ethnic minorities in dementia research, there is still underrepresentation in these communities. Targeting barriers and facilitators to research participation, we developed and tested a culturally tailored communication approach tailored for Hispanics.

Methods

An iterative process informed by input from the minority advisory board of an Alzheimer's Disease Research Center, developed 2 brief health communication videos, featuring Hispanic actors/Spanish language sub-titles. The experimental video (POWER) focused on barriers, facilitators, and readiness to participate in dementia research. The control video focused on education only. A randomized prospective survey compared POWER vs. control. While race or ethnicity were not inclusion criteria for enrollment, we oversampled Hispanic and non-white communities. We examined change pre- vs. post-video on dementia knowledge, cumulative barriers, and facilitators to research participation, as well as change in research readiness measured by the Transtheoretical behavior change model.

Results

The analyzable sample (N = 184) had a mean age of 40.0 (SD = 13.2) years, 57.4% (n = 105) female, 47.2% (n = 85) non-white, 21.2% (n = 39) Hispanic, with 88 individuals randomized to POWER and 96 to control. Unadjusted evaluation of change from pre- vs. post-video showed significant improvements in dementia knowledge, research facilitators and research barriers (all ps < .001) but no significant difference between POWER vs. controls. Adjusted for age, gender, race, ethnicity and education, only change in dementia knowledge remained significantly improved for the group as a whole, with no significant difference between POWER vs. controls. In the entire sample, Hispanics had significantly more improvement in research readiness (r = .217, p = .003). Exploratory analysis of positive change predictors in those randomized to POWER and to control suggests Hispanics in POWER may be at a disadvantage with respect to dementia knowledge (r = −.248, p = .02) and research facilitators (r = −.342, p = .001).

Conclusions

Health communications can improve dementia knowledge across diverse communities.

Keywords

Alzheimer's disease dementia research participation stigma under-represented groups

Introduction

Latinos comprise only 2% of participants in Alzheimer's Disease (AD) and dementia clinical trials¹ despite experiencing disproportionate AD burden.² Racial and ethnic communities, including Hispanic and Latino populations, have a high prevalence, incidence, and cumulative risk of AD.³ However, Hispanic and Latino communities may demonstrate reluctance to participate in research due to the potential interruption of other responsibilities.⁴ People may be more willing to participate if they know statistics on AD among Latinos,⁵ are invited by someone of the same culture, have an altruistic intent, or have a family member with AD.⁴

Recruitment of underrepresented communities in research depends heavily on researchers themselves.⁴ Researchers must improve strategies to enroll more diverse populations.⁶ Although a scoping review of minority recruitment in dementia research by Brijnath et al.⁷ called for improved recruitment strategies, another report by Gilmore-Bykovskyi et al.⁸ noted that the evidence base for best practices recruitment remains limited. A “comprehensive approach” has been suggested, utilizing specific recruitment strategies and eligibility requirements, while ensuring a positive participation experience.⁹

Lack of representation in research among minority populations has negative consequences, including inability to generalize research findings,¹ as well as inequitable health care resources for minority groups and possible inaccurate ethnicity-specific subgroup analyses.¹⁰ George et al.¹¹ conducted a systematic review of literature examining factors that impede (barriers) or encourage (facilitators) participation in studies among U.S. major racial and ethnic minority groups. The most commonly reported barriers included mistrust, fear of unintended outcomes, stigma, competing demands, and lack of access to materials in native languages. Facilitators to encourage research participation included culturally congruent research processes, benefits of research participation, altruism, and involvement of family/community. A recent review of facilitators to dementia research participation, Massett et al.¹² suggested the importance of appreciating heterogeneity among Hispanic and Latino populations, and offering tailored recruitment efforts.

Guidelines from the National Institute on Aging¹³ on minority population recruitment and research centers, such as Multi-regional Clinical Trials Center of Brigham and Women's Hospital and Harvard,¹⁴ call attention to a need for cultural congruency and community outreach. Yet, evidence is lacking on optimal approaches to engage with and recruit racial and ethnic minority communities in dementia research.⁸ For example, only 1 study in a systematic review of 19 dementia research studies among racial and ethnic minority populations utilized a conceptual or theoretical framework.¹⁵

Efforts focused on culturally tailored and appropriate approaches to improve engagement in dementia education interventions among racial and ethnic minorities¹⁶ could also inform research recruitment approaches. A recent clinical trial¹⁷ tested a novel health communication approach called “Targeting stigma, mistrust, personal concerns, altruism and cultural congruence to boost awareness and participation in dementia research” (POWER) which targeted barriers, facilitators and readiness to dementia research participation mapped to the Transtheoretical behavior change model (TTM) developed by Prochaska and DiClemente.¹⁸ A randomized controlled trial of POWER vs. a standard educational control in an analyzable sample of 207 mostly older individuals (mean age = 57.6, SD = 17.2) that included 59 African Americans (28.5%) found controls had a significantly greater increase in dementia knowledge (p = 0.004) vs. POWER, while POWER was associated with significantly reduced research barriers (p = .044) vs controls. Within the African American subgroup, there was a trend towards both improved dementia knowledge (p = .059) and research readiness (p = .051) with both trends favoring POWER compared to the control group.

The work presented here builds upon the previous POWER RCT, with the aims of 1. replicating the results of the previous RCT in a new prospective clinical trial and 2. exploring the potential impact of POWER on Hispanic and Latino participants and a younger age cohort. Hoping for a replication of findings, we hypothesized that individuals assigned to the control intervention would have improved dementia knowledge compared to POWER while individuals assigned to POWER would have reduced research barriers compared to controls. Given that the new clinical trial featured a version of POWER that was culturally tailored to Hispanic participants, we were interested in preliminary signals that might suggest any specific impact on the Hispanic and Latino subgroups in the sample.

Materials and Methods

Phase 1: Video Conceptual Framework and Production

Two videos were developed utilizing iterative input from an already existing Minority Advisory Board (MAB) of an Alzheimer's Disease Research Center. The control video was educational in nature and included fact-based information on dementia and dementia awareness. The experimental video, (POWER) based on a TTM conceptual model (Figure 1) targeted an individual's readiness to embark on a behavior change journey through 5 stages: pre-contemplation (no consideration of behavioral change), contemplation (thinking about behavioral change), preparation (preparing for behavioral change by making plans), action (adopting and practicing new behavior), and maintenance (sustaining adopted behavior over time). In addition to these stages of change, this model includes decisional balance: gauging positive and negative consequences of engaging in a behavior. Figure 1 shows movement through the stages of change via points where one's decisional balance to participate in dementia research may be impacted by barriers (lack of access to information, mistrust, concern about unintended outcomes, stigma) and facilitators (cultural congruence, altruism, benefits to participation).

Figure 1.

Barriers and facilitators related to dementia research participation mapped onto a stage of behavior change framework.

Using a previous approach,¹⁷ this project targeted 4 barriers and 3 facilitators (outlined below) to engage in dementia research. Both the POWER and control videos were 3 to 4 minutes in length and utilized the same Hispanic actors (a middle-aged to older women, 1 younger woman), all with lived experience in dementia. Spanish language sub-titles were provided on both videos.

Health Communication Targets

Barriers and facilitators to research participation were modified from George et al.¹¹ who examined barriers and facilitators in dementia research among U.S. racial and ethnic minorities.

Barriers

Inadequate or incorrect information about AD /dementia: Low motivation to enroll in dementia research studies if perception of risk is low or person lacks knowledge/awareness of dementia.

Mistrust: Fear of exploitation or even intentional mistreatment; informed consent form associated with signing away rights, legal protection

Stigma: Concern about what others will think/how they will react if dementia diagnosis becomes known

Concern about unintended outcomes: Concern that research participation limits access to other treatments¹⁹

Facilitators

Cultural congruency: Availability of staff member/representative, similar to the research participant's racial/ethnic group, to discuss the research process.

Altruism: Selfless concern for well-being of others; participation in dementia research is an act of altruism, benefiting future society²⁰

Benefits to participation: Self-efficacy, optimism, and self-esteem may improve, bolstering a person's coping ability with disease setbacks²¹

Phase 2: Study Recruitment and Participants

Phase 2 involved studying the effects of the POWER versus the educational control video. Using a randomized prospective pre-post online survey design, areas of examination included dementia knowledge, barriers and facilitators to dementia research, and change in research participation readiness. This study was approved by the local institutional review board.

Recruitment occurred both entirely online and using in-person facilitation (using study team laptops to view the videos and take the survey). While cultural congruency for Hispanic communities was top of mind in video development, the research team also wanted to investigate TTM broadly, and therefore, this study did not exclude participants related to race, ethnicity, or age. In contrast to a previous study which specifically targeted adults over age 50 and in response to suggestions from the Alzheimer's Center MAB that interventions targeting younger people might have more lasting effects on society research engagement, this randomized control trial attempted to engage a broader age sample including students and younger individuals. Approaches for recruitment included outreach to university groups, community list-serves or email groups as well as Hispanic faith communities, senior centers, and self-referral in response to flyers placed in the community.

Study participants confirmed in writing and online their consent to participate in the study, then filled out a survey before viewing the video randomized to them, and again after the video. The survey included demographics (pre-only) and standardized measures of barriers and facilitators to AD research. A Qualtrics web-based survey captured data and randomized participants in a 1:1 ratio (POWER vs. control). After completing the survey, participants received a $15 Amazon gift card.

Baseline and Outcome Measures

Baseline variables: Age, gender, race and ethnicity, educational level, occupation, perceived financial hardship, and lived experience with dementia were gathered.

Research Readiness: Changes in TTM stages were evaluated with a 3-item adapted version of Health Survey Stages of Change Survey.²² Items were scored 1 for strongly disagree to 5 for strongly agree. The total score ranged from a possible minimum of 3 and a possible maximum of 15 with higher scores indicating higher levels for change of state towards dementia research.

Research Barriers and Facilitators: Adapted versions of scale/survey tools related to dementia research barriers and facilitators^{11,23,24,25,26} were utilized to derive a research participation barriers scale and a research participation facilitators scale. Ten items measuring barriers for participation in dementia research were scored a 1 for strongly agree to 5 for strongly disagree. The total score for barriers ranged from a possible minimum of 10 and a possible maximum of 50 with higher scores indicating lower levels of barriers. Five items measuring facilitators for participation in dementia research were scored 1 for strongly disagree to 5 for strongly agree. The total score of facilitators ranged from a possible minimum of 5 and a possible maximum of 25 with higher scores indicating higher levels for facilitators.

Dementia knowledge: 6 knowledge statements based on information from the Alzheimer's Association website and Alzheimer's Disease Knowledge Scale.²⁷ Items were scored 1 for correct and 0 for incorrect. The total score for the dementia knowledge category ranged from a possible minimum of 0 and a possible maximum of 6 with higher scores indicating higher levels of knowledge.

Data Analysis

To evaluate differences between POWER intervention and control groups, we employed independent sample t-tests for continuous outcome variables and Chi-square tests for categorical outcome variables. The analyzable sample was limited to participants who completed both initial and follow-up survey assessments.

Changes in knowledge, barriers, facilitators, and research readiness were evaluated using 2 group (control vs. intervention) by 2 time-points repeated measure analysis of variances.

Composite scores for dementia knowledge, barriers, facilitators, and research participation readiness (based on stages of change) were calculated. To assess changes in these measures over time, repeated measures analyses of variance with 2 group (control vs. intervention) × 2 time-points were conducted, allowing evaluation of intervention effectiveness in improving participants’ knowledge of dementia, reducing barriers, enhancing facilitators, and increasing readiness for research participation.

Unadjusted and adjusted (controlling for age, gender, race, ethnicity, and education) repeated measure analysis of variance was used to test time and time × group within-subject effects. To identify association of demographics with changes in outcomes, difference scores from pre- to post-intervention of key outcomes were created. Positive difference scores reflected improvement from pre- to post-intervention. Correlations were conducted between demographic variables and difference scores for the outcomes of knowledge, barriers, facilitators, and research readiness.

Results

Study Flow and Data Cleaning Procedures

Noted in Figure 2 (CONSORT diagram), 496 participants initially engaged with the POWER survey. Thirty-eight individuals who did not consent were removed. Next, 36 participants were removed who had incomplete responses. We removed 157 participants who interacted with the entire study (pre-survey assessment, video viewing, post-video viewing) for <5 min. To exclude fraudulent responses, participants (N = 48) who had a Qualtrics reCAPTCHA score of less than 0.50 or fraud score of greater than or equal to 30 were removed. Finally, given our primary focus on comparing POWER vs. control videos, participants who watched less than half of their respective video (N = 30) were removed. After these cleaning procedures, the final dataset included N = 184 (Control = 96; Experimental = 88). In-person facilitated enrollment comprised 8.2% (N = 15) of the total analyzable sample.

Figure 2.

Study CONSORT diagram.

Baseline Characteristics

As noted in Table 1, the analyzable sample (N = 184) had a mean age of 40.0 (SD = 13.2) years, 57.4% (n = 105) female, 47.2% (n = 85) non-white, 21.2% (n = 39) Hispanic. With respect to previous experience with AD/dementia, 42.9% (n = 79) of individuals reported they had cared for a person with dementia in the past.

Table 1.

Sample Descriptive Statistics.

Variable (N = 184)	Entire sample (n = 184)	POWER (N = 88)	Control (N = 96)	p	Stat. test
Age (mean, SD)	40.0 (13.2)	39.1 (12.8)	40.8 (13.7)	0.389	ITT
Gender (N/%) (N = 183)				0.980	C
Male	78 (42.6%)	37 (42.5%)	41 (42.7%)
Female	105 (57.41%)	50 (57.5%)	55 (57.3%)
Ethnicity (N/%)				0.551	C
Hispanic	39 (21.2%)	17 (19.3%)	22 (22.9%)
Non-Hispanic	145 (78.8%)	71 (80.7%)	74 (77.1%)
Race (N/%) (N = 180)				0.567	C
Non-White	85 (47.2%)	43 (49.4%)	42 (45.2%)
African American	29 (16.1%)	14 (32.6%)	15 (35.7%)
Other racial groups^a	56 (31.1%)	29 (67.4%)	27 (64.3%)
White	95 (52.8%)	44 (50.6%)	51 (54.8%)
Employment status (N/%)				0.203	C
Employed (part/full-time)	159 (86.4%)	79 (89.8%)	80 (83.3%)
Unemployed (retired/unemployed/disabled)	25 (13.6%)	9 (10.2%)	16 (16.7%)
Finances a problem? (N/%) (N = 182)				0.643	C
Never	89 (48.9%)	40 (46.5%)	49 (51.0%)
Rarely	41 (22.5%)	23 (26.7%)	18 (18.8%)
Sometimes	45 (24.7%)	20 (23.3%)	25 (26.0%)
Mostly/always	7 (3.8%)	3 (3.5%)	4 (4.2%)
Education (N/%)				0.832	C
Some high school/GED/some college (1–3 years or technical school)	131 (71.2%)	62 (70.5%)	69 (71.9%)
College graduate (4+ years)	53 (28.8%)	26 (29.5%)	27 (28.1%)
Dementia experience (N/%)				0.7771	C
Self	7 (3.8%)	3 (3.4%)	4 (4.2%)
Family member	26 (14.1%)	10 (11.4%)	16 (16.7%)
Cared for person with dementia	79 (42.9%)	36 (40.9%)	43 (44.8%)
Other	21 (11.4%)	8 (9.1%)	13 (13.5%)
Two or more of the above	51 (27.7%)	31 (35.2%)	20 (20%)

C = chi-square test; FE = Fisher exact test; ITT = independent samples t-test.

^a Non-African American non-white sample included American Indian/Alaskan Native n = 1, Asian n = 10, and Other n = 22.

Aim 1 Replication Analysis: Combined Sample, Intervention Arm Changes in Variables of Interest

As noted in Table 2, unadjusted evaluation of change from pre- versus post-video showed significant improvements in dementia knowledge, research facilitators, and research barriers (all ps < .001), but no significant difference between POWER vs. control. Adjusted for age, gender, race, ethnicity, and education, only change in dementia knowledge remained significantly improved for the group as a whole, with no significant differences between POWER vs. controls. There was no significant difference between POWER and controls on research barriers.

Table 2.

Within-Subject Effects for Unadjusted and Adjusted Repeated Measures Analysis of Variance for Dementia Knowledge, Facilitators, Barriers, and Research Readiness.

Models	Unadjusted				Adjusted^a
	Pre M (SE)	Post M (SE)	F	p	Pre M (SE)	Post M (SE)	F	p
Within-subjects effects
Dementia knowledge
Time	4.363 (1.00)	5.938 (.022)	250.683	<.001	4.363 (.095)	5.954 (.018)	4.300	.040
Time × Treatment			.034	.853			.089	.766
Control	4.385 (.138)	5.979 (.030)			4.363 (.132)	5.982 (.026)
POWER	4.341 (.144)	5.898 (.032)			4.364 (.137)	5.927 (.027)
Research Facilitators
Time	21.855 (.336)	24.385 (.273)	106.086	<.001	21.906 (.298)	24.464 (.249)	1.042	.309
Time × Treatment			.716	.399			.380	.539
Control	22.198 (.465)	24.521 (.378)			22.176 (.402)	24.590 (.346)
POWER	21.511 (.486)	24.250 (.394)			21.636 (.418)	24.339 (.360)
Research Barriers
Time	40.134 (.693)	44.780 (.584)	102.933	<.001	40.397 (.592)	44.953 (.505)	.340	.561
Time × Treatment			.117	.732			.196	.658
Control	40.292 (.958)	45.094 (.807)			40.536 (.823)	45.292 (.701)
POWER	39.977 (1.001)	44.466 (.843)			40.258 (.856)	44.615 (.729)
Research Readiness^b
Time	7.020 (.201)	6.965 (.230)	.228	.634	6.978 (.174)	6.884 (.194)	.816	.368
Time × Treatment			.000	.983			.006	.940
Control	7.062 (.279)	7.010 (.319)			6.963 (.242)	6.860 (.269)
POWER	6.977 (.291)	6.920 (.333)			6.994 (.252)	6.908 (.280)

^a Repeated measure analysis of variances adjusted for age, gender, race, ethnicity (Hispanic), and education.

^b Based on trans-theoretical stages of change estimated marginal means are provided.

Aim 2: Exploration of Racial and Ethnic Sub-Groups

Table 3 illustrates post-hoc exploratory analysis that examined demographic variables in relation to changes in the 4 outcome variables. Among the entire sample, being non-white (r = .201, p = .007) and having less education (r = −.424, p < .001) were associated with significantly greater improvement in dementia knowledge, while only having less education was significantly associated with improvement in research participation barriers (r = −.298, p < .001). Among the entire sample, being non-white (r = .195, p = .009), non-Hispanic (r = −.278, p < .001), and having less education (r = −.337, p < .001) were significantly associated with improvement in research participation facilitators. Regarding research readiness, having a college education (r = .171, p = .02) and having greater financial security (r = .246, p = .001) were significantly associated with improvement in research readiness. In the entire sample, Hispanics exposed to any communication (POWER or control) had significantly more improvement in research readiness (r = .217, p = .003). As noted in Table 3, demographic predictors for change in the 4 outcome variables based on randomization assignment were, for the most part, similar to what was observed in the entire sample. However, there were some notable differences. In the control sample, being Hispanic was not significantly associated with improvement in dementia knowledge (r = −.056, p = .59), while in the POWER sample, being Hispanic was significantly associated with less improvement in dementia knowledge (r = −.248, p = .02). In the control sample, Hispanics had significant improvement in research readiness (r = .250, p = .01). In the POWER sample, Hispanics also had improvement in research readiness (r = .189, p = .08), although this difference was not statistically significant. Exploratory analysis of predictors of positive change among those randomized to POWER and to control also suggests that Hispanics in POWER may be at a disadvantage with respect to research facilitators (r = −.342, p = .001).

Table 3.

Correlations of Demographics with Difference Scores in Dementia Knowledge, Research Barriers, Research Facilitators, and Research Readiness: Total Sample (n = 184), Control Sample (n = 96), and POWER Sample (n = 88).

	Knowledge difference scores		Barriers difference scores		Facilitators difference scores		Readiness difference scores
	Pearson r	sig	Pearson r	sig	Pearson r	sig	Pearson r	sig
Non-White
Total sample (n = 180)	0.201^a	0.007	0.144	0.054	0.195^a	0.009	0.095	0.204
Control (n = 93)	0.218^b	0.036	0.147	0.160	0.243^b	0.019	0.087	0.407
POWER (n = 87)	0.185	0.085	0.144	0.183	0.143	0.186	0.102	0.347
Hispanic
Total sample (n = 184)	−0.143	0.052	−0.128	0.083	−0.278^a	0.000	0.217^a	0.003
Control (n = 96)	−0.056	0.587	−0.174	0.090	−0.217^b	0.034	0.250^b	0.014
POWER (n = 88)	−0.248^b	0.020	−0.074	0.493	−0.342^a	0.001	0.189	0.079
Age
Total sample (n = 184)	0.038	0.604	0.049	0.513	0.117	0.115	−0.091	0.221
Control (n = 96)	−0.029	0.777	0.000	0.997	0.138	0.180	−0.077	0.456
POWER (n = 88)	0.117	0.278	0.105	0.328	0.103	0.340	−0.106	0.325
College
Total sample (n = 184)	−0.381^a	0.000	−0.209^a	0.004	−0.237^a	0.001	0.171^b	0.021
Control (n = 96)	−0.429^a	0.000	−0.213^b	0.037	−0.286^a	0.005	0.222^b	0.030
POWER (n = 88)	−0.327^a	0.002	−0.204	0.057	−0.191	0.075	0.126	0.242
Education
Total sample (n = 184)	−0.424^a	0.000	−0.298^a	0.000	−0.337^a	0.000	0.087	0.238
Control (n = 96)	−0.401^a	0.000	−0.280^a	0.006	−0.426^a	0.000	0.119	0.247
POWER (n = 88)	−0.450^a	0.000	−0.319^a	0.002	−0.249^b	0.019	0.059	0.586
Finance Security
Total sample (n = 182)	0.145	0.051	0.086	0.250	0.021	0.778	0.246^a	0.001
Control (n = 96)	0.198	0.053	0.091	0.380	0.106	0.304	0.196	0.056
POWER (n = 87)	0.080	0.465	0.080	0.466	−0.074	0.500	0.298^a	0.005

sig = statistical significance.

^a Correlation is significant at the 0.01 level (2-tailed).

^b Correlation is significant at the 0.05 level (2-tailed).

Discussion

This study used an evidence-based conceptual model of behavior change (TTM) to inform a health communication approach that targeted specific, potentially modifiable barriers and facilitators for dementia research participation. Although barriers and facilitators to research participation have been well-studied, there is a dearth of research related to how best to engage under-represented groups in dementia research.²⁸ A previous RCT conducted by this research group found that the novel health communication approach (POWER) was more effective than a standard health education approach in addressing research barriers, while standard education was more effective in improving knowledge of dementia. The previous RCT, which used a version of POWER that was culturally adapted for African American communities, also suggested a statistical trend for African American individuals exposed to POWER vs. controls to have improved dementia knowledge and research readiness (although this RCT was not powered to example the effects of TEAM vs. control specifically in African American individuals).

This research sought to replicate findings from the previous RCT, with a version of the POWER health communication that was culturally adapted for Hispanic and Latino communities although the study did not exclude participants based on race or ethnicity. In contrast with our original study and primary hypothesis we did not find a difference between POWER vs. controls in this replication analysis and both POWER and control were associated with improved dementia knowledge after adjusting for key demographic variables.

Compared to our previous POWER RCT, this sample was younger, better educated, and had less financial hardship. It has been suggested that generational differences may impact research participation, such as age, higher educational attainment, and employment.²⁹ Younger individuals may be more comfortable with technology and more interested in personalization of care,³⁰ both of which could make research trial participation more acceptable. However, this contrasts with a 2015 report that did not find Millennials more desirous than previous generations to participate in clinical research.³¹

Exploratory analysis of demographic predictors of positive change on the 4 key outcomes of our replication RCT (dementia knowledge, research participation barriers, research participation facilitators, and research readiness) suggested lower baseline levels of education, being non-white and being non-Hispanic predicted the greatest change in dementia knowledge regardless of the type of health communication approach. Positive change in research barriers was seen most robustly among those with less education while positive change in research facilitators was seen in non-whites, non-Hispanics, and those with less education. Other reports suggest that sociodemographic factors may drive research participation.³² A report be Kim et al.,³³ based on a U.S. survey found that those with lower education and lower income were less likely to participate in clinical trials.

The fact that our replication RCT enrolled a fairly well-educated sample of both white and non-white individuals could have explained, at least in part, why there was limited change in research attitude variables. Compared to our original RCT sample, baseline levels of research barriers in the replication analysis showed similar mean baseline levels of dementia knowledge but fewer baseline research barriers and more research facilitators. Mean baseline levels of research readiness were, in contrast, somewhat lower than in the original sample. It is also possible that younger individuals, who may not fear developing dementia as much as those who are older, feel less compelled, or motivated to participate in research.

With respect to our exploratory aims, we noted that Hispanics had significant improvement in research readiness (r = .217, p = .003) with either POWER or control compared to non-Hispanics. However, exploratory analysis of predictors of positive change among those in POWER and control suggested that Hispanics in POWER may be at a disadvantage with respect to dementia knowledge (r = −.248, p = .02) and research facilitators (r = −.342, p = .001). This trial found being financially better off is associated with greater readiness to participate in research. Perhaps salaried employees find research involvement less burdensome as they are not in a situation where missed work hours to attend research appointments can lead to financial strain. Better compensating individuals for research might be 1 approach to enhance participation. Abdelazeem³⁴ tested the effectiveness of incentives and saw a significant increase in research consents with small monetary incentives. However, potential ethical issues could arise with financial incentives, especially for individuals in lower socioeconomic circumstances. Resnik³⁵ has addressed ethical issues related to financial incentives and suggested possible compensatory strategies such as wage-payment for hourly employees.³⁵

Since initial design of this study and conceptualization of the barriers and facilitators as put forth by George, 2014, 2 additional studies^12,36 have addressed research barriers and facilitators in underrepresented groups. Aranda and colleagues considered multi-level barriers, beyond the individual level, to consider in recruitment. These findings echo that of Quiroz et al.,⁶ who suggest AD researchers have a bigger role and responsibility in recruitment, rather than relying on prospective study participants. This new perspective involving multi-level barriers is an area for future research and health communication interventions to possibly better understand dementia research participation.

While our study provides insights into health communication approaches that might inform and engage people in AD/dementia research, there are several limitations. First, Hispanic participants represented only about 21% of the total sample and was under-powered to detect change in POWER vs. control specifically in Hispanic individuals. Second, the survey was in English, a barrier for monolingual Spanish-speaking individuals. Third, there were a substantial proportion of individuals who were excluded from the analyzable sample as they had minimal engagement with the survey. It is possible that this could have biased the sample in factor of those who had more incentives to participate in research and this may limit findings generalizability. Mean endpoint scores on 3 of our research engagement variables (knowledge, research barriers, research facilitators) were relatively high at baseline, possibly reflecting ceiling effects and limiting our ability to discern the full spectrum of possible change with either of our health communication approaches. Finally, we did not Hispanic sub-group cultural identity or acculturation.

Conclusion

Health communication efforts can have positive effects on increasing AD knowledge, particularly among those with less education and in communities that are underrepresented in AD research. Sociodemographic factors such as educational level, race/ethnicity and financial status may also be associated with perceived levels of research barriers, research facilitators, and with research readiness. Results of our original RCT and this replication analysis collectively suggest that individuals with less education may benefit most from health communications that provide both general information on AD and approaches that focus on reducing barriers and optimizing facilitators. Minority communities with higher levels of research barriers and fewer research facilitators may achieve gains in these domains with approaches that are culturally congruent. Future research should delve into individual-specific factors to help individuals engage in AD/dementia research.

Footnotes

Data Availability

Data are available to qualified scientists with appropriate institutional data use agreement. Scientists seeking data access should reach out to the lead author.

Declaration of Conflicting Interests

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

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project was supported by a grant from the Elisabeth Severance Prentiss Foundation [grant number = NA] and support from University Hospitals of Cleveland.

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