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.