Engaging Hispanic/Latino young adults in Alzheimer's disease research through boot camp translation

Abstract

INTRODUCTION

Despite increased risk for Alzheimer's disease and related dementias (ADRDs), Hispanic/Latino (H/L) populations remain underrepresented in research due to several barriers (e.g., stigma, health literacy). Considering family dynamics and cultural values, young H/L individuals may serve as liaisons to help communicate ADRD information and mitigate barriers to research participation.

METHODS

We recruited two groups of predominantly H/L young adults, ages 18–35, to carry out Boot Camp Translation (BCT) of ADRD in Houston, Texas (n = 12), and Las Vegas, Nevada (n = 15). Through BCT, we sought to identify (1) key AD‐related messages, (2) target message recipients, and (3) effective strategies to convey these messages. ADRD knowledge was assessed pre‐ and post‐BCT.

RESULTS

Members endorsed improvements in subjective understanding (Cohen's d = 1.37; p = .001) and objective knowledge of ADRD (Cohen's d = 0.96; p< .001). Suggested central messaging conveyed urgency and responsibility (e.g., “Alzheimer's is real. Healthy or not: On which side do you want to be?”), provided ADRD educational information (e.g., common symptoms), and represented H/L cultural values (familismo; e.g., “Alzheimer's is not the end. You are not alone”). Identified target age groups differed by city; Houston: 50+ years, 30–49 years, 18–29 years; Las Vegas: 40‐ and 50‐year‐olds. Members emphasized visual materials that are intergenerational, representative of the diverse H/L community, informative, and straightforward.

DISCUSSION

Extending our prior work with BCT in middle‐age and older adults, we leveraged intra‐familial communication to better understand ADRD‐specific health education in H/L communities. While several messaging strategies appeared consistent across sites, regional differences in target audiences and preferred communication strategies highlight the importance of locally tailored messaging. Results identified culturally relevant avenues by which young adults may communicate ADRD research to older family members, fostering engagement. Future work is needed to examine the efficacy and effectiveness of these strategies in service of increasing H/L representation in ADRD research.

Highlights

• Health literacy barriers affect recruitment of Hispanic/Latino (H/L) communities.

• Young H/L individuals can serve as health information liaisons to their families.

• Boot Camp Translation (BCT) targets community relevant messaging.

• We carried out BCT with young H/L individuals in two cities to co‐develop ADRD messaging.

• Results highlight the need for locally tailored health messaging.

1. BACKGROUND

Hispanic/Latino (H/L) populations currently comprise over 18% of the population in the United States, and this number is expected to increase to nearly 29% by 2030. ¹ , ² The rapid growth of H/L populations has implications for public health as it relates to aging‐related cognitive disorders like Alzheimer's disease and related dementias (ADRDs). H/L individuals are 1.5–2× more likely than non‐Hispanic White individuals to develop ADRDs and have the highest proportion of ADRD diagnoses as compared to other ethnic groups in the United States. ³ , ⁴ Despite these disparities, H/L individuals are approximately nine times less likely to be represented in ADRD clinical trials funded by the National Institutes of Health. ⁵

There are several recruitment barriers for H/L individuals in aging and ADRD research, such as stigma associated with participation, general mistrust of academic institutions and medical centers, and a lack of culturally tailored resources and representative researchers or staff. ⁶ Additionally, low health literacy among H/L samples is a significant barrier to recruitment. ⁷ To address these issues, we established The Engaging Communities of Hispanics/Latinos for Aging Research (ECHAR) Network, a multi‐city, community‐engaged initiative that aims to leverage existing community resources and co‐develop culturally responsive strategies to overcome these barriers. ⁸ Through this network, we collaborated with older H/L community members to identify strategies for improving ADRD awareness, particularly within multi‐generational contexts. ⁸ , ⁹ These strategies highlighted the potential role of younger H/L individuals in promoting brain health and supporting intergenerational communication within families. Notably, young H/L adults often live in intergenerational households that focus on the well‐being of the family unit rather than on the individual: a cultural script often referred to as familismo. ¹⁰ In addition to placing a strong emphasis on families, which leads to family centered decision‐making, H/L young adults are more open to working with researchers than older adults. ¹¹ Health education models that center younger individuals as intergenerational liaisons have been proposed and have been shown effective in prior studies; for example, cross‐cultural work targeting communities at elevated risk for stroke has demonstrated that younger individuals can act as successful mediators in health‐related communications and, ultimately, improve stroke‐specific health literacy. ¹² Prior work on brokering in H/L immigrant households further suggests that parents often rely on their adolescent and young adult children as intermediaries in navigating various settings, including healthcare systems. ¹³ As highlighted by Katz, this brokering process is supported by parent–child scaffolding, where pooled complementary skill sets foster shared understanding and enable mutual learning within the family system. ¹⁴

RESEARCH IN CONTEXT

1. Systematic review: The authors reviewed the literature using traditional (e.g., PubMed) sources and meeting abstracts and presentations. Models of intergenerational information transfer have been used to understand involvement of young adults in health communication, but less is known in Alzheimer's disease‐related health and scientific communication.

2. Interpretation: Our findings identify aspects of convergence and divergence in messaging strategies brokered by young adults in two different cities. These results highlight the need for tailoring of health communication tools that are locally relevant.

3. Future directions: The manuscript describes a framework for addressing Alzheimer's‐related health literacy barriers by leveraging intergenerational information transfer. Future work is needed to examine the effectiveness of strategies identified with this framework.

1.1. Conceptual framework

Young H/L individuals often serve as liaisons, or “brokers,” between intergenerational information (IGI) ecosystems and health information sources as they translate important documents, correspondence, and medical information. ¹⁵ More specifically, in this conceptual framework of mediated health education, the IGI ecosystem consists of family members such as grandparents, parents, and young adult children. The system of health information sources is comprised of research institutions, individuals outside of the family (e.g., healthcare providers), and outlets where health information is received. Young adult children are represented as having stronger communication and proximity to health information sources, especially to research institutions, partly due to greater health and research literacy as well as levels of education. ¹⁶ We adopted this framework to identify intervenable targets for ADRD messaging that could address health literacy barriers in multi‐generational H/L families (Figure 1). Along these lines, we identified the path between young adults and health information sources as a potential target that could benefit from Boot Camp Translation (BCT) to enhance ADRD‐specific health communication for young adult children. BCT is a manualized, community‐based approach developed by Norman and colleagues designed to translate medical jargon into action‐based messages; by bringing together clinical experts and community members, the overarching goal of BCT is to help make medical evidence and guidelines relevant and accessible to local communities. ¹⁷ In turn, culturally relevant messages would be communicated by young adult children to their IGI ecosystems with downstream effects for engagement and recruitment into ADRD research.

FIGURE 1.

Intergenerational information ecosystem.

The current study examined subjective and objective ADRD knowledge in young H/L participants before and after participating in a community‐informed health communication program (i.e., BCT). We also aimed to identify the culturally relevant ADRD messages generated through their participation and to explore potential regional differences in messaging and recruitment sources. Together, these efforts facilitate the role of young adults within family systems and cultural contexts in communicating ADRD information, empowering H/L community members, and ultimately enhancing participation in ADRD research.

2. METHODS

2.1. Sample

The research teams at two of the ECHAR Network sites – the University of Houston (UH) in Houston, Texas, and the University of Nevada, Las Vegas (UNLV) in Las Vegas, Nevada – were tasked with recruiting 10 to 15 community members to participate in BCTs focused on ADRD. Community members were recruited to partner with the respective research teams predominantly via student organizations, social media, word of mouth, and email blasts to students and university email distribution lists. To be included in the BCT, participants had to be between the ages of 18 and 35 and identify as a member of the local H/L community or as an individual that works closely with H/L individuals. Members otherwise represented a broad range of socioeconomic, occupational, and residential backgrounds as well as familiarity with ADRD (see Table 1). All community members provided informed consent and were monetarily compensated for their participation.

TABLE 1.

Study descriptives.

Study variables	Houston, Texas N = 12	Las Vegas, Nevada N = 15	Total sample N = 27
Age (years)	21.8 (3.67) Range: 18–31	21.7 (3.37) Range: 19–31	21.7 (3.44) Range: 18–31
Sex/gender
Female	83.3% (10)	73.3% (11)	77.7% (21)
Male	16.7% (2)	20.0% (3)	18.6% (5)
Queer	‐	6.7% (1)	3.7% (1)
Household income
0–25,000	16.7% (2)	20.0% (3)	18.5% (5)
25,000–50,000	50.0% (6)	26.7% (4)	37.0% (10)
50,000–75,000	8.3% (1)	13.3% (2)	11.1% (3)
75,000–100,000	25.0% (3)	‐	1.1% (3)
>100,000	‐	20.0% (3)	1.1% (3)
Prefer not to answer	‐	20.0% (3)	1.1% (3)
Education (years)	14.4 (1.16) Range: 12–16	13.4 (1.24) Range: 12–16	13.9 (1.29) Range:12–16
Pre‐BCT subjective Alzheimer's disease knowledge (%)	34.55 (15.72) Range: 20–60	47.33 (20.52) Range: 10–80	41.92 (19.39) Range: 10–80
Pre‐BCT ADKS score	22.73 (3.32) Range: 17–27	22.87 (3.29) Range: 19–29	22.81 (3.24) Range: 17–29
Post‐BCT subjective Alzheimer's disease knowledge (%)	69.38 (9.43) Range: 60–85	69.29 (26.45) Range: 10–90	69.32 (21.51) Range: 10–90
Post‐BCT ADKS score	25.38 (3.25) Range: 20–30	25.42 (2.68) Range: 22–30	25.40 (2.84) Range: 20–30

Note: Values are mean (standard deviation) or N (%), as appropriate; ADKS.

2.2. Approach

A sample BCT schedule and details related to the process are described elsewhere. ⁸ , ¹⁷ Briefly, all members received information related to ADRD (e.g., risk factors, diagnostics, disease course, statistics, health disparities) from a content expert during the first meeting; in the present study, both sites received the same presentation. Each site team then worked for approximately 6 months to: (1) identify key, community‐relevant messages related to ADRD; (2) identify target audiences for these messages; and (3) design outreach and dissemination strategies that could be used to deliver these messages to the target audiences. Standard BCT procedures were followed, and co‐facilitators leveraged techniques such as summarizing concepts and notes, managing small and large group discussions, and reflecting on key themes. ⁸ A recruitment success factor (RSF = [number of members yielded +1]/ [number of efforts made+1]) ¹⁸ was calculated to examine the number of participants obtained from each recruitment source.

2.3. Measures and analysis

Demographic data on age (in years), sex, education (years of school completed), race/ethnicity, and household income were collected for each participant. The participant's subjective understanding and objective knowledge of ADRD was assessed prior to the start of the BCT and again at the final session. More specifically, members were asked to rate their subjective understanding of Alzheimer's disease on a scale of 0 (not at all) to 100 (extremely well); they also completed the Alzheimer's Disease Knowledge Scale (ADKS), ¹⁹ a 30‐item true/false questionnaire. The ADKS has been shown to be a valid and reliable measure for measuring change in ADRD health literacy; in the present sample, internal consistency for the ADKS at baseline was modest (α = .57), consistent with prior research using this multidomain knowledge measure. ¹⁹ However, the majority of ADKS items showed positive corrected item‐total correlations, supporting appropriate item discrimination. Statistical analyses were conducted using R. ²⁰ Descriptive analyses were calculated for the overall sample and by institution. Comparisons between institutions for demographic variables were conducted using chi‐squared tests for categorial variables and analyses of variance (ANOVAs) for continuous variables.

3. RESULTS

3.1. Overall summary

As shown by Table 2, recruitment sources yielded varying degrees of success. More specifically, the highest recruitment success came from a combination of student organizations and social media as well as email blasts to faculty listservs. Reported reasons for wanting to participate were in line with the older adult BCT and encompassed a desire to gain further knowledge about ADRD driven by personal interest or connection (e.g., having a family member with ADRD), as well as a commitment to contribute to the health and well‐being of the H/L community.

TABLE 2.

RSF by recruitment source per site.

Houston, Texas
Source	Members	% of Total	Efforts	% of Effort	RSF
Personal contacts and connections	1	8.33	1	7.69	1.00
Student organizations	10	83.33	10	76.9	1.00
Social media (LinkedIn)	1	8.33	2	15.38	0.67
Las Vegas, Nevada
Direct contacts	3	20.00	5	33.33	0.67
Member referral	1	6.67	1	6.67	1.00
Faculty email blast	8	53.33	762	53.33	0.01
Social media (Instagram)	3	20.00	28	20.00	0.14
Flyers	0	0	7	0	0.13

Demographic information for the members is summarized in Table 1. A total of 27 members (mean age 21.7±3.5 years, range = 18–31) participated in the BCT. The members largely identified as female (78%) and had approximately 13.9±1.3 years of education (range = 12–16). The two samples did not differ in age or sex distribution (p>0.05). The Houston sample was slightly more educated than the Las Vegas sample (14.4±1.16 vs 13.4±1.24 years, respectively; F (1,25) = 4.72, p = .04, ${\eta }_{\mathrm{p}}^2$= .16). Among members who reported their income, 64% reported incomes less than $50,000 and 16% reported incomes between $50,000 and $75,000. Regarding ethnicity, 63% of the members identified as Hispanic/Latino(a/x/e); information on specific heritage groups (e.g., Mexican heritage) was not uniformly collected. Pre‐ and post‐BCT data suggested significant improvements in subjective understanding of ADRD (Cohen's d = 1.37; p = .001; Figure 2) and objective knowledge of ADRD (Cohen's d = 0.96; p< .001; Figure 3) across both sites.

FIGURE 2.

Subjective Alzheimer's disease understanding for Houston n = 12 and Las Vegas n = 17.

FIGURE 3.

ADKS: Houston n = 12 and Las Vegas n = 17.

3.2. Key messages

Both teams similarly identified disease education as a priority for messaging given the ADRD health literacy gaps they perceived in H/L communities but differed in the decision to make this a primary or secondary focus. For instance, while the Houston team identified addressing common misconceptions about ADRD as important, members saw this as secondary to a need for messaging that conveyed urgency and accountability. Along these lines, the Houston community members agreed on a central message for BCT products, “Alzheimer's is real. Healthy or not: On which side do you want to be?” The secondary messages members identified were the following: “memory loss is NOT a part of normal aging” and “What is the cost of having Alzheimer's disease versus the cost of reducing its risk?”

The Las Vegas team voiced a need to center messaging on disease education. Las Vegas community members developed a bilingual tagline that can be altered to convey disease‐specific information (“¿Recuérdas…?” in Spanish and “Do you remember…?” in English). The tagline is augmented by questions that convey a common ADRD symptom that family members may recognize in their aging loved ones (e.g., “…si pagué las cuentas?” and “…if I paid the bills?”). However, the team found a need to convey hope and honor the strong connection and community of H/L families. Along these lines, they decided to conclude the tagline question with the phrase “El Alzheimer no es el final. No estás solo,” or “Alzheimer's is not the end. You are not alone.”

3.3. Target audiences

The two teams diverged in what H/L audiences should be targeted for the identified key messages. Members of the Houston team indicated a need to target the entire H/L adult population, which they categorized by age groups (i.e., 18‐ to 29‐year‐olds, 30‐ to 49‐year‐olds, and 50+). This strategic approach would reportedly allow for the prioritization of messaging towards older adults (50+) at the greatest risk for ADRDs while still ensuring the inclusion of younger populations for a longer lasting impact. Specifically for younger demographics, the focus for 18‐ to 29‐year‐olds would be on changing habits that could reap rewards in brain health in the long run. Members thought this population did not need a specific call to action, but rather a general awareness of disease and risk reduction (e.g., website with resources and information). For 30‐ to 49‐year‐olds, members stated that the audience requires a larger sense of urgency than younger people, but the focus of the message should continue to be on changing healthy habits to delay dementia. The team also felt this age group could benefit from more specific information about ADRD (e.g., ADRD is a progressive disorder) and the actions community members can take to reduce the risk. Members noted this group is in a unique position where they can pass healthy habits to the younger generations while also being alert for symptoms in their older parents. Finally, Houston community members believed that individuals 50 years and older have the highest sense of urgency for awareness, needing the most information and facts about the disease, and requiring a specific call to action to “talk to their doctor.”

Las Vegas community members identified a singular target audience of H/L adults in their 40s and 50s for two reasons. First, it was believed that this demographic would most likely be providing care for their aging parents and, therefore, could be empowered with disease knowledge to better identify signs and symptoms of ADRD. Second, they themselves may be at increased risk for developing ADRD and may be more motivated to learn about ADRD and employ preventive measures. Furthermore, given middle‐age adults’ social standing in the family, it was believed that older family members would be more receptive to ADRD health information from them than younger adults.

3.4. Dissemination strategies

Dissemination strategies identified by members of both teams included traditional media as well as more modern communication strategies. The Houston team felt branded print and multi‐media materials (e.g., t‐shirts, bumper stickers, infographics, flyers, audiovisual content) would be effective. Members specified that the dissemination strategies should be similar across age groups. The Las Vegas team identified methods such as social media (Facebook Reels, TikTok), local news, Spanish‐language television networks (e.g., Telemundo), and informational flyers to distribute at health fairs, vaccination clinics, churches, and supermarkets.

In terms of general stylistic requests, Houston community members emphasized the use of intergenerational and culturally relevant images, simple and clear fonts, use of QR codes, and the use of specific statistics related to ADRDs. Las Vegas community members also made several stylistic requests, including but not limited to: (1) use “El Alzheimer” instead of the formal “la enfermedad de Alzheimer” to reduce disease stigma; (2) use the term “Latino” instead of Latinx/Latine; and to (3) use photos of diverse H/L multigenerational families in advertisements to highlight the strength of H/L families and the effect of ADRD on the entire family.

3.5. Recruitment sources

Lastly, recruitment sources varied by site, with Houston demonstrating the highest success through student organization‐based outreach, whereas Las Vegas recruitment was primarily driven by faculty email blasts but with substantially lower efficiency.

4. DISCUSSION

We sought to carry out a BCT of ADRD in a young adult H/L sample to help address brain health literacy barriers. Two BCTs were conducted—in Houston, Texas, and Las Vegas, Nevada—to identify culturally relevant brain health messaging and community responsive messaging strategies for H/L communities. Several similarities were noted between the two sites regarding messaging; these included emphasizing the need for culturally relevant messaging with an emotional appeal and increasing awareness to help reduce the risk for ADRDs. Both sites also recognized the benefits of targeting specific age groups within the H/L population for effective messaging and engagement. This approach implicitly leverages how individuals within H/L families may serve as health information brokers to share crucial health information intergenerationally. Lastly, the sites encouraged using a variety of dissemination methods, including traditional media (e.g., flyers and informational materials) and modern channels (e.g., social media and local news).

Despite these similarities, several differences between the BCTs should be highlighted. Regarding messaging, the Houston community members identified a need to target different age groups with tailored messages centered on awareness, urgency, and the importance of proactive behavior. On the other hand, the Las Vegas community members identified a need to primarily focus messaging on disease education and identification while emphasizing de‐stigmatization and community. Target audiences also differed between the two sites where the Houston team segmented the intended H/L adult population into three age groups (18–29, 30–49, 50+) and the Las Vegas team focused specifically on H/L adults in their 40s and 50s. Third, while both groups identified a range of dissemination strategies, the Houston team suggested using more traditional methods (e.g., infographics, flyers, bumper stickers) and statistics, while the Las Vegas team emphasized the use of stigma‐reducing language and engaging with the community through accessible and familiar channels. Lastly, recruitment sources varied by site, highlighting the importance of tailoring recruitment strategies to local institutional and community contexts in multi‐site, community‐engaged aging research.

Although the present work provides valuable insights into ADRD messaging in H/L communities, several limitations should be acknowledged. This work included a sample that may not be representative of the heterogeneity of H/L populations in the United States. Specifically, a large proportion of members shared they were of Mexican heritage, female sex, and highly educated. The ADKS demonstrated modest internal consistency in the present sample, possibly reflecting its multidomain assessment of knowledge; additional work is needed exploring its psychometric properties. Additionally, our study did not measure acculturation and living situation for the members, which could influence their beliefs about ADRDs, communication styles, and health literacy. Consequently, the messaging strategies identified in this study may not fully address the needs and perspectives of other H/L heritage groups or account for the diverse experiences within H/L communities.

Despite some limitations, this work has notable strengths. Our community groups included individuals from varied demographics and levels of ADRD knowledge, similarly to our previously reported BCT with older adults. ⁸ Indeed, results were somewhat consistent with our prior results with older adults, suggesting convergence across age groups in key themes (e.g., brain health education, stigma, community resilience), target audiences (e.g., the need for H/L individuals of various ages to learn about brain health), and dissemination strategies (e.g., hopeful and positive tone to messaging, use of multimedia approaches). Additionally, as witnessed in our BCT with older adults, most participants agreed to continual engagement with our research teams; approximately 91% of members from the Houston BCT and 88% of members from Las Vegas BCT agreed to join the site's Community Action Board (CAB), a collaborative initiative aimed at strengthening the partnership between the ECHAR Network and local Hispanic/Latino communities. The CAB's mission is to advance scientific research, promote brain health equity, and enhance overall well‐being by addressing cultural, socioeconomic, and structural barriers to healthcare access and quality care.

In summary, we present an extension of our previously reported model for engaging H/L community members to address ADRD health literacy barriers where young adults serve as liaisons or “brokers” between health information sources and their families to develop culturally responsive ADRD messaging. We present cross‐regional similarities and differences between messaging, target audiences, and dissemination strategies which may be informative for community engaged and culturally responsive outreach strategies with H/L communities. Our results highlight the need for engaging geographically diverse communities and tailoring messaging to local contexts. Future and continuing efforts will assess how well these community‐driven messages reach their audience and their effectiveness in boosting ADRD health literacy to help lessen disparities in H/L communities.

CONFLICT OF INTEREST STATEMENT

The authors have no conflicts of interest to disclose. Author disclosures are available in the Supporting Information.

CONSENT STATEMENT

All community members were informed of the purpose, expectations, and procedures of the BCT partnership and provided written consent.

USE OF GENERATIVE AI AND AI‐ASSISTED TECHNOLOGIES

Generative artificial intelligence (AI) was not used in the preparation and/or creation of this paper.

Supporting information

Supporting Information

DATA AVAILABILITY STATEMENT

Data are available from the corresponding author upon reasonable request.