Trust in Community-Academic Research Partnerships in Alzheimer’s Disease and Related Dementia Research

Background/Purpose: Substantial evidence indicates there is greater risk of developing Alzheimer’s Disease, related dementias (ADRD), and other neurodegenerative disorders among African American and Latinos, compared to non-Hispanic White people. Despite the National Institute of Health Revitalization Act of 1993, disparities in research participation of racial and ethnic minorities persists. Mistrust among racial and ethnic minorities is commonly cited as an impediment for their inclusion in studies. The first aim of this exploratory study was to examine what key dimensions of trust as proposed by Dave et al. (TICARP) were being implemented by Alzheimer’s Disease Centers across the United States to recruit African American, Latino and other racial and ethnic minorities to participate in research. Using Dave et al’s framework on trust in community-academic research partnerships, open-ended questions on using the TICARP dimensions were asked (i.e., authentic , effective and transparent communication; mutually respectful and reciprocal relationships; sustainability; committed partnership; communication, credibility and methodology to resolve problems). The second aim of this study was to identify differences in study participation, between Alzheimer’s Disease Centers that incorporated the authentic , effective and transparent communication dimension and those that did not. Lastly differences in TICARP dimensions endorsed by Alzheimer’s Disease Centers personnel in the recruitment specifically of African American, Latino and other racial and ethnic minority populations were also examined.

Methods: In this qualitative study, an a priori approach, using the trust-related factors in community-academic research partnerships (TICARP) framework was used to examine strategies implemented by National and California state Alzheimer’s Disease Centers to create and maintain trust with communities. The conceptual framework of trust presented by Dave et al. identifies 5 trust-related factors in community-academic research partnerships: 1) authentic , effective and transparent communication, 2) mutually respectful and reciprocal relationships, 3) sustainability, 4) committed partnerships, 5) communication, credibility and methodology to resolve problems. National and California state Alzheimer’s Disease Center personnel, responsible for community engagement, outreach, and recruitment efforts into ADRD research studies (n=25) were interviewed.

Results: Findings demonstrate personnel endorsed their commitment to partnerships and their ability to communicate credible information and resolve problems related to research participation. There was some indication of some personnel that incorporated principles of mutually respectful and reciprocal relationships with the community. However, levels of support and mutual effort varied. Opportunities for authentic, effective, and transparent communication and implementation of sustainable practices were least endorsed. In addition, to these dimensions, personnel shared the need to address access to healthcare and to assess the community when working with racial and ethnic minorities.

Conclusions: Results indicate that ADRD research personnel endorsed all TICARP dimensions in their recruitment of racial and ethnic minorities into ADRD research studies. Further development of these approaches indicates promising efforts that can be used to expand on creating and maintaining trust. In addition, results demonstrate the need for healthcare access and a community assessment when recruiting racial and ethnic minority populations. Attention to these strategies may support trust and increase participation of African American and Latinos in Alzheimer’s Disease and related dementias research.