Project Summary

Background: Alzheimer’s disease (AD) disproportionately impacts Latinos, who are 50 percent more likely to develop AD than non-Latino whites. A significant barrier to advancing understanding of AD and care among Latinos is their underrepresentation in patient-centered outcomes research (PCOR). There are few community-informed approaches that engage stakeholders in participation with researchers and clinicians to shape dementia research priorities and strategies.

Proposed Solution to the Problem: This project will collaborate with Latino stakeholders and community partners who have trust among Latino communities, building capacity for PCOR in dementia care through culturally relevant activities.

Objectives: The project team’s long-term goal is to develop and sustain a network of Latino stakeholders and community partners that are primed for PCOR. The short- and medium-term goals are: (a) engage Latino stakeholders and key partners in discussions about PCOR and dementia care; (b) build capacity among key stakeholders and community-based organizations (CBOs) in highly impacted regions; (c) identify what is most important to Latino stakeholders related to research and outcomes in dementia care; and (d) develop culturally specific resources to support PCOR engagement.

Activities: The team will leverage the infrastructure of its previous PCORI project to establish a Latino-centered stakeholder steering council (SC) to bring oversight and guidance to the project; partner with the SC to identify and build capacity for PCOR among partners in areas highly impacted by dementia; build capacity for PCOR among stakeholders via culturally relevant activities; and promote sustained capacity building by developing resources that support Latino engagement in PCOR.

Projected Outcomes: Short-term: active participation of stakeholder advisory committee members in the SC; strengthened partnerships with key stakeholders of the Latino community to participate in the SC;  build capacity among the members of the SC for PCOR; and promote sustained capacity building by developing resources that support Latino engagement in PCOR. Medium-term (after project period): a sustained cadre of Latino stakeholders that understand the principles of PCOR; intermediary stakeholders prepared to integrate their knowledge of PCOR and Alzheimer’s disease into their work with Latino communities; and SC and researchers co-create a PCOR study based on the list of priority topics, measuring outcomes that directly affect Latino families. Long-term (after project period): Latino families impacted by AD and other stakeholders participate in PCOR and CER to contribute to knowledge around brain health, dementia, and caregiving to reduce the disparities in dementia care; and researchers engage with stakeholders in their research.

Outputs:  (a) List of PCOR priorities and outcomes important to Latino stakeholders; (b) a video series of stakeholder testimonios reflecting their perspectives about PCOR; (c) report on the use of culturally relevant strategies for PCOR capacity building.

Patient and Stakeholder Engagement Plan: The steering council of key stakeholder groups will partner with the project team to oversee all project activities, and will serve as a bridge to their wider constituent networks. The key stakeholders for this project include Latino families impacted by dementia, community health workers, CBOs, faith communities, clinicians, and national organizations.

Project Collaborators: This is a collaboration between the Caring for the Caregiver program at UT Health San Antonio, the South Texas Area Health Education Centers, and UsAgainstAlzheimer’s.

Project Information

Sara Masoud, MPH
University of Texas Health Science Center San Antonio
$249,013

Key Dates

24 months
2021

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Project Status
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: January 20, 2023