1 |. Introduction
Fostering equitable participation in dementia research is essential to understand variations in risk factors, biomarkers, and treatment effectiveness among older adults from minoritized groups [1]. The Bronx—a county in New York City with high dementia prevalence [2]—includes ethnic minorities, immigrants, and individuals from low-income neighborhoods. Local dementia studies, however, lack adequate representation of these populations, failing to align with the demographic makeup of the Bronx. We aimed to address this by determining the knowledge, readiness, and barriers to dementia research participation among older adults, and identifying strategies to build trust and enhance research readiness.
2 |. Methods
Adults aged ≥ 60 years, visiting medical and community-based centers, were invited by the primary investigator and program directors of community-based organizations (CBO) to complete a brief survey (available in English and Spanish) on knowledge of local dementia research, prior research participation, preferred study types, barriers, and incentives for research readiness. Demographic information was limited to sex and race/ethnicity. A two-sample t-test was used to compare responses between White versus Minoritized (Black and Hispanic) older adults. In a virtual stakeholder studio with CBO members, we used semistructured questions to discuss strategies to build trustworthiness and enhance research readiness among older adults.
3 |. Results
Among 85 participants (75% women; 44.8% Hispanic, 37.1% Black, 17.9% White), 55% were unaware of local studies (61.5% White, 60.6% Hispanic, 48.1% Black). Only 17.3% reported prior research participation, yet 68.4% (100% White, 61.3% Hispanic, 60.7% Black) expressed interest in future studies (Figure 1a). Most participants preferred participating in studies of cognitive/memory decline (48.2%). For interventions, 37.7% preferred lifestyle modifications, and 28.2% preferred medication. Participants were least interested in brain imaging (27.1%) and genetics (25.9%) studies (Figure 1b). All White versus 60% of minoritized adults expressed interest in future participation (p = 0.01). Minoritized older adults preferred more information about research as an incentive (p = 0.02). Limited access to study centers (29.4%) and lack of time (21.2%) were the main barriers. Free transportation (53%), compensation (32.8%), and test results availability (32%) were the main incentives.
FIGURE 1A |.
Readiness to participate in future dementia research among older adults.
FIGURE 1B |.
Types of dementia research older adults expressed interested in.
The points across three themes that emerged during the stakeholder studio are (see Figure 2): To build trustworthiness and sustainability, CBO members stressed the importance of continuity, timely follow-ups, and strong connections with community advocates. To develop skills for cultural sensitivity, active listening, open communication, nonstigmatizing language, and using culturally sensitive material were recommended. Effective strategies for communication were encouraging research participation through clinicians and social workers who are familiar with older adults, one-on-one interactions, regular outreach, simple clear messaging, and being sensitive to visual/hearing impairments and stigma.
FIGURE 2 |.
Summary of themes emerged during the stakeholder studio (n = 6 members from community-based organizations and n = 2 members from the study team).
4 |. Discussion
In this diverse sample, 68% were interested in participating in future research, including 61% of adults from traditionally understudied populations who are often assumed to harbor mistrust [3]. However, there was limited awareness of local research that should be addressed through multilevel, community-driven approaches (i.e., regular health fairs, community champions, educational talks) while robustly tracking where lack of knowledge persists.
Participants were interested in studies of cognitive decline, but not in imaging or genetics studies—reflecting concerns about perceived invasiveness as previously reported [4, 5]. Similarly, they preferred lifestyle modifications over medication. With emerging biomarkers and medications, underrepresentation of minoritized adults in research limits the understanding of biomarker positivity variations and treatment effectiveness. Understanding the perceptions in the community and designing tailored approaches to diversify populations in all types of dementia research– through interactive health education– is important.
While prior research identified time and mistrust as barriers, limited accessibility was the key barrier in this study [6, 7]. Many participants preferred research in community settings to avoid disturbing their daily routines. Similar to other studies, minoritized older adults preferred more information as an incentive [8] suggesting that different groups may have varying informational needs for research participation, depending on health literacy, access to resources, and lived experience [8].
CBOs as champions or ambassadors is pivotal to bridge the gaps and ensure meaningful engagement between researchers and older adults. They create accessible, culturally sensitive outreach efforts aligned with community needs. Clinician champions are important since minoritized communities are more likely to visit primary care than specialized clinics [9]. Trusted providers can increase dementia awareness and access to local services. Due to our survey’s limited demographic data and small sample size, we could not examine differences in research readiness by factors like age and nativity. This study was limited to the Bronx metropolitan area. While the results may apply to similar areas, they may not be generalizable to areas with different demographics. These findings will help us create inclusive study designs to enhance research access to high-risk areas and diversity in local dementia research.
Acknowledgments
We acknowledge the valuable contributions from Dr. Anderson Torres, representing R.A.I.N TotalCare Inc., Mr. Dante Tripiani, representing Caring Kind NY, Ms. Paola Ogando, representing JASA, Ms. Jennifer Schranz, and Roni Kersey, representing Alzheimer’s Association NYC Chapter during our community-engagement studio.
Funding:
This project was supported by an intramural Resnick Gerontology Center Early Career Research Award offered by the Department of Medicine/Geriatrics, Albert Einstein College of Medicine (PI: Oshadi Jayakody).
Disclosure
The funding source was involved in the study design but not in data collection, analysis, and interpretation of data.
Footnotes
Conflicts of Interest
The authors declare no conflicts of interest.
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