Latino voices to shape new studies to improve care, support for families living with dementia
South Texas Latinos will have the opportunity to share the challenges and concerns of living with dementia and caring for individuals affected by dementia through a new project of The University of Texas Health Science Center at San Antonio, also called UT Health San Antonio.
Storytelling, a major part of Latino culture, will be the centerpiece of the project. The program will include Latinos from San Antonio to the Rio Grande Valley, explained Sara Masoud, MPH. She is a UT Health San Antonio doctoral student in translational science who received a $250,000 grant from the Patient-Centered Outcomes Research Institute to fund the program. “The goal is to give Latino families living with dementia a voice in designing research projects aimed at improving health care and support for themselves and their loved ones,” Masoud said.
Latinos are 50% more likely to develop Alzheimer’s disease than non-Latino whites, according to the report, Latinos and Alzheimer’s Disease. In addition, 13 South Texas counties are listed among the top 25 in the U.S. with the highest prevalence of Alzheimer’s disease, a study published by the Urban Institute and Alzheimer’s disease advocacy group UsAgainstAlzheimer’s states.
Yet fewer than 8% of Latinos participate in clinical trials, according to Diversity and Disparity in Dementia: The Impact of Ethnoracial Differences in Alzheimer’s Disease.
“This is largely because researchers have not prioritized creative ways to include Latinos in clinical trials and research that honor their varied cultures and histories. They also have not reached out to Latinos as communities that have been marginalized,” said Masoud, a senior community outreach coordinator in the School of Nursing’s Office of Nursing Research and Scholarship for the Caring for the Caregiver program.
“This is an important challenge for researchers: to find ways to engage the diverse voices of people living with dementia and their caregivers in order to set culture-specific research goals for improvement. For example, many in the Hispanic community would not consider placing their loved one in a nursing home. This calls for more culturally appropriate support for family members in the caregiving role,” she explained.
A steering council co-led by Masoud and Mayra Mendoza, a Latina family caregiver and community advocate in San Antonio, will coordinate the program. Key stakeholders include:
– Latino individuals who live with dementia in South Texas.
– Latino family caregivers who have experienced dementia care.
– The South Texas Area Health Education Center, a program funded by the U.S. Health Resources Administration that focuses on improving the health status and educational opportunities within communities. The School of Nursing administers the South Texas AHEC, which supports five multi-county regions.
– Community health workers and promotoras, Latino community members who receive specialized training to provide health information to the community.
– UsAgainstAlzheimer’s, a national advocacy group focused on policymaking and promoting dementia research in diverse communities.
– The San Antonio and South Texas Chapter of the Alzheimer’s Association.
Other partners supporting this research effort include:
– UT Health San Antonio’s Glenn Biggs Institute for Alzheimer’s and Neurodegenerative Diseases, which provides diagnosis, care and research opportunities for Alzheimer’s patients.
– UT Health San Antonio and UT Rio Grande Valley, which jointly received recognition as a National Institute on Aging Alzheimer’s Disease Research Center. The designation includes funding for research on Alzheimer’s and related dementias.
Masoud’s two-year grant is a natural progression from a similar project conducted in San Antonio from 2018 through 2020 led by Masoud’s mentor, Carole White, PhD, RN, FAAN, School of Nursing research professor and founding director of the Caring for the Caregiver program.
“The goal of the first project was to identify what people living with dementia and their caregivers wanted to study. Although we had good representation of Latinos in the first project, we felt it was important to prioritize our focus on Latinos living throughout South Texas, where access to health systems and dementia care resources differ,” Masoud explained. “With the new project, we wanted to expand the program using different engagement strategies like community pláticas (intimate gatherings), to allow for more meaningful input and to better define the research priorities specific to the experiences and perspectives of Latino families.
“This project will not only help us better understand what families living with dementia in South Texas need in terms of research and care but will also help us learn better strategies to engage communities in ways that reflect their interests and values.” Masoud added.
Mendoza, co-chair of the stakeholder council, cares for both of her parents. Through her experiences in the community and as a caregiver, she has learned that few Latinos receive a dementia diagnosis. Of those few, many do not receive culturally competent care and are rarely engaged in feedback regarding better care for future Latino families. In her role on the stakeholder council, Mendoza plans to share her parents’ experiences. She said, “Knowing that I am contributing to the cultivation of research where experiences and like theirs hold value is especially gratifying to me.”
Masoud invites Latino families living with Alzheimer’s who wish to participate in this project to call 210-787-2815 or email her at firstname.lastname@example.org.