Community-Engaged Research With Latino Dementia Caregivers: Overcoming Challenges in Community Advisory Board Development

Abstract

Background and objectives: Latinos caring for a person with Alzheimer's disease and related dementias (ADRD) have the highest prevalence of caregiving. Yet, they are less likely to benefit from evidence-based interventions given their continued underrepresentation in ADRD-related research. Community advisory boards (CABs) have the potential to address barriers to research for underrepresented communities; however, there are complexities to establishing and sustaining CABs. This article describes how our work addressed challenges in CABs related to unbalanced power relations, language barriers, the value of time, and low research knowledge and health literacy.

Research design and methods: Nine Latino CAB members, including older Latino caregivers, were trained in a comprehensive program designed to increase knowledge about health research methods and ethics, cognitive health, and cultural adaptation methods. Members completed pre- and post-training measures of Alzheimer's disease knowledge, attitudes, and beliefs toward research, and a satisfaction survey.

Results: Results from the satisfaction questionnaire indicated that the program was well received. CAB members increased their knowledge regarding the management of behavioral and psychological symptoms of dementia and dementia-associated risk factors and treatment. Positive changes in members' attitudes toward research included increased willingness to participate in trials and subject protection measures.

Discussion and implications: Formalized training in research conduct and ethics and health literacy is a promising strategy to reduce challenges in establishing and maintaining CABs and can also optimize CAB impact to address gaps in older Latino ADRD caregiving research.

Keywords: Alzheimer’s disease; Caregiving; Health equity; Latino culture.