UTHealth Houston and other dementia researchers share strategies for recruiting diverse people with Alzheimer’s disease for clinical trial

Recruiting diverse people living with dementia and their caregivers, traditionally an unstudied population, was successful through using electronic health records of patients and engagement with their clinicians at health systems, according to an article with co-lead authors from UTHealth Houston School of Public Health and Wake Forest University School of Medicine.  

The paper, “The dementia care study (D-CARE): Recruiting strategies and demographic characteristics of participants in a pragmatic randomized trial of dementia care,” was published recently in Alzheimer’s & Dementia, the journal of the Alzheimer’s Association.

“We hope our successful recruitment of diverse older adults with dementia and their caregivers in the D-CARE study will help investigators plan future pragmatic trials” said Rafael Samper-Ternent MD, PhD, co-first-author and associate professor in the Department of Management, Policy, and Community Health in the School of Public Health. Co-first author from Wake Forest was Mia Yang, MD, MS, associate professor of gerontology and geriatric medicine. 

More than 6.5 million Americans are living with Alzheimer’s disease, and 1 in 3 older adults will die with the disease or another form of dementia, according to the Alzheimer’s Association. While white adults make up the majority of people living with Alzheimer’s disease in the U.S., Black adults are two times more likely to have the disease and other dementias, and Hispanics are 1.5 times more likely, according to the association.  
 
The D-CARE Study was conducted at four clinical trial sites from 2019 to 2023 and compared three approaches in dementia care: health system-based dementia care, community-based dementia care, and usual care. 
 
The trial successfully enrolled 2,176 racially/ethnically diverse persons with Alzheimer’s disease or related dementias and their caregivers despite challenges during the COVID-19 pandemic. The mean age of patients with dementia was 80.6 years, and 58.4% were women, 8.8% were Hispanic/Latino, and 11.9% were Black/African-American. The average age of caregivers was 65.2 years, and 75.8% were women, 9.4% were Hispanic/Latino, and 11.6% were Black/African American. 
 
Findings from the trial are expected to be available later this year." Cultural adaptation of research strategies helps overcome common barriers like limited English proficiency, and limited health care access to include diverse adults into research studies," Samper-Ternent said. "Health systems first need to know the populations they serve to work collaboratively to design interventions that can help address their needs and overcome the perceived barriers." 
The success of these strategies suggests that researchers can then use them to overcome socioeconomic obstacles that historically have resulted in low enrollment of underrepresented groups. 

The D-CARE study showed the most effective enrollment strategy was utilizing electronic health records and physician/provider referrals. Other approaches included community partner referrals, social media campaigns, localized advertising, and Spanish-language study materials.   

Telehealth visits allowed more participants from rural and wider geographic areas to participate. 

D-CARE, the largest dementia care clinical trial to date, was led by the University of California in Los Angeles. The study was conducted at Wake Forest University in Winston Salem, North Carolina; Baylor Scott & White Health in Temple, Texas; Geisinger Medical Center in Danville, Pennsylvania; and the University of Texas Medical Branch in Galveston, Texas. Yale University served as the data coordinating center. 

This article was adapted from one by Wake Forest University.