Abstract African American /Black American older adults’ low participation in research reduces the generalizability of research findings and hinders understanding of dementia mechanisms, further widening health disparities. Both the Alzheimer’s Association and the National Institutes of Health have identified recruitment of African Americans with cognitive impairment into dementia research as an area of high priority. Distrust of research and medical institutions is often cited as a barrier to participation of African Americans in dementia research. Therefore, the goal of this study is to better understand African American community members’ expectations associated with trust. We used focus groups and semi-structured interviews to examine the expectations associated with overall trust. We conducted 6 focus groups: 4 with African American older adults and 2 with caregivers of African American older adults with cognitive impairment. We also interviewed 5 African American older adults with cognitive impairment (total n=59). Data were analyzed with content analysis. Five themes emerged: 1) Importance of providing truthful help/information leading to trust; 2) Long relationships leading to trust; 3) Acting efficiently and consistently (e.g., “not fooling around”) leading to trust; 4) Transference of trust (e.g., I can likely trust someone trusted by a trusted person); 5) Difficult to trust because of a harsh social environment. To conclude, trust is a complex belief associated with multiple expectations and relationships. It is critical that researchers understand these expectations related to trust in order to increase recruitment of African American older adults into dementia research.

Black/African American populations are underrepresented as participants in dementia research. A major barrier to participation of African American older adults in dementia research is a tendency to distrust research institutions owing to both historical and contemporary racism. Building on the Ford framework, the objective of our study was to examine factors that influence participation in dementia research among African American older adults and caregivers, with an emphasis on understanding factors related to trust. Data were collected during January 2019 and March 2020 from 10 focus groups with African American older adults (n=91), 5 focus groups with caregivers (n=44), and interviews with administrators of community-based organizations (n=11), and meetings with our Community Advisory Board. Inductive/deductive content analysis was used to identify themes. The results identified an overall tension between distrust of researchers and a compelling desire to engage in dementia research. This overarching theme was supported by six themes that provided insights about the multiple layers of distrust, as well as expectations about the appropriate conduct of researchers and academic institutions. Strong commitment to the community was identified as a priority. The findings suggest that a paradigm shift is needed to increase the representation of African Americans in dementia research. In this new paradigm, earning the trust of African American communities becomes a systemic endeavor, with academic, state, and national institutions deeply committed to earning the trust of African American communities and guiding researchers in this endeavor. The findings also generated actionable recommendations to help improve representation of African American older adults in dementia research.

Background

Black/African Americans are receiving COVID-19 vaccines at much lower rates than whites. However, research is still evolving that explains why these vaccination rates are lower. The aim of this study was to examine the effects of the pandemic among older Black/African Americans, with an emphasis on trust and vaccine intention prior to vaccine development.

Methods

Data were collected between July and September 2020 from 8 virtual focus groups in Detroit, MI and San Francisco Bay Area, CA with 33 older African Americans and 11 caregivers of older African Americans with cognitive impairment, supplemented by one virtual meeting with the project's Community Advisory Board. Inductive/deductive content analysis was used to identify themes.

Results

Five major themes influenced the intention to be vaccinated: uncertainty, systemic abandonment, decrease in trust, resistance to vaccines, and opportunities for vaccination. The last theme, opportunities for vaccination, emerged as a result of interaction with our CAB while collecting project data after the vaccines were available which provided additional insights about potential opportunities that would promote the uptake of COVID-19 vaccination among older Black/African Americans. The results also include application of the themes to a multi-layer framework for understanding precarity and the development of an Integrated Logic Model for a Public Health Crisis.

Conclusions

These findings suggest that trust and culturally relevant information need to be addressed immediately to accelerate vaccine uptake among older Black/African Americans. New initiatives are needed to foster trust and address systemic abandonment from all institutions. In addition, culturally relevant public health campaigns about vaccine uptake are needed. Thus, systemic issues need immediate attention to reduce health disparities associated with COVID-19.