What matters most to Latinos impacted by dementia?

Background

Alzheimer’s disease and related dementias are highly prevalent among Latinos, who are up to 2x more likely to develop Alzheimer’s than non-Latino whites. Despite their higher risk for dementia, Latinos are also excluded from participation and leadership in research that impacts them. If research is conducted without representation from Latinos then the data and interventions (for example, drug treatments or dementia care services) may not line up with their needs, values, and culture and can even be harmful to Latinos.

Latinos may be more able to participate in research if they are included in determining what is studied (setting priorities), how the studies are conducted (methods), and what the studies measure (outcomes).

Our community Steering Council is leading a project to connect with Latinos in South Texas to better understand what they believe dementia care research should focus on.

Goals and Activities

Our Steering Council is a group of persons living with dementia, family caregivers, community health workers, community organizations, and researchers from across the San Antonio and South Texas region who are working together for this project. Our goal is mobilize our South Texas Latino community to participate in and lead patient centered dementia care research.

To do this, we have been building our skills as a Council in community engagement and research so that we can connect with our wider communities to become involved in our efforts. We have been hosting pláticas (community conversations) with Latino families impacted by dementia and other key community members to discuss our experiences with dementia and how research can address the issues that matter to us.

We are developing resources to support researchers and Latino community members to work together for patient centered research in dementia care. These resources include prioritized lists of research topics and outcomes, a report/guide on hosting community pláticas for research, and a series of videos reflecting testimonios (personal narratives) of the families and community members impacted by dementia.

Our Steering Council

Angelica Davila
Belinda Flores
Cindy Robles
Janie Escareno
Joe Arciniega
Juanita Lopez
Karla Lopez Lorenzo
Letty Sanchez
Maxine Vieyra
Mayra Mendoza
Paula Barrera
Sarah Cadena
Thomas Brittain

Past Steering Council

Jessie Valdez
Ana Bethel Vasquez

Research Team

Sara Masoud
Carole White
Janna Lesser
Luis Luy

Supportive Team

Mica Bermea (PhD Intern)
Becky Garcia (Administrative Support)

👉 Photos of las pláticas 

This project is funded by a Patient Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award (EACB-23031).