As of 2022, it is estimated that as many as 6.5 million people have dementia or dementia-related diseases. The burden of neurological diseases disproportionately impacts communities of color which is why utilizing community engagement strategies is so effective for those communities. Yet, in a scoping review of nearly 400 disparity-focused neurological intervention studies very few of them incorporated community engagement strategies.
To uncover gaps in neurologic-intervention studies incorporating community engagement practices, corresponding author Bernadette Boden-Albala, DrPH, director and founding dean at the UC Irvine Program in Public Health, collaborated with researchers to publish a study in Neurology.
In the current landscape of neurological diseases, communities of color are facing a burden that is exacerbated by education, income, access to insurance, occupation, racism, stigma, neighborhood, and the built environment. A few examples include: Black and Hispanic individuals are disproportionately more likely to live with undiagnosed Alzheimer’s disease; Blacks with Parkinson’s disease are less likely to receive treatment than White patients; Hispanics living with spinal cord injuries are less likely to receive treatment and more likely to have worse outcomes and the list can go on.
Our findings are a stark wake up call for future researchers to not only incorporate community-engagement strategies, but also critically integrate historical contextual factors and lived experiences when working with communities.”
– Bernadette Boden-Albala, DrPH
Community-engaged research recognizes and incorporates strategies to address social determinants of health and make progress towards lessening the burden of disease in diverse communities.
Boden-Albala and team carried out this scoping review of 392 disparity-focused interventions in stroke, Alzheimer’s disease and related diseases, Parkinson’s disease, epilepsy, spinal cord injury, and traumatic brain injury. Of the 392 interventions, only 13% incorporated community engagement practices, including partnering with community organizations, using culturally-tailored materials, and working with community health workers. Of all the neurologic interventions, stroke interventions more commonly engage communities, however, stroke is historically a disease of disparities that has been accumulating for nearly two decades.
“While it is promising that neurologic interventions are engaging communities in some way, most still lack meaningful engagement, and most do not report community identification and integration of solutions that could address the bigger picture around social determinants of health,” says Boden-Albala. “Our findings are a stark wake up call for future researchers to not only incorporate community-engagement strategies, but also critically integrate historical contextual factors and lived experiences when working with communities.”
Additional authors include Vida Rebello, PhD, Emily Drum, MPH, and Desiree Gutierrez, MPH, all from UCI Program in Public Health; Wally R. Smith, MD, from Virginia Commonwealth University’s Department of Medicine; Rachel A. Whitmer, PhD, and Derek M. Griffith, PhD, from University of California, Davis’s Department of Public Health Sciences.
