WHAT WE ALREADY KNOW

Key Findings From Our Dementia Research Retreat

AI-assisted synthesis from the retreat audioSouth Texas Council • Arab Council • African American Council | September 2026

I want to be careful about how I present this because this was a group effort. These are not my recommendations or conclusions, nor am I speaking for any of the councils. This is simply an attempt to organize what we collectively said so we can look at it together and ask:

Did we hear ourselves correctly?

Names have been removed, and anything participants believe needs clarification, correction or removal should be changed.

WHAT WE ALREADY KNOW

The analysis identified seven major themes that repeatedly surfaced:

1. Dementia doesn't exist in isolation.

We talked about diabetes, environmental conditions, food access, healthcare and other circumstances surrounding our communities. One important idea emerged: instead of blaming people for a “lack of awareness,” we should also ask why the information never reached them.

2. Culture can affect how families recognize dementia.

Across the councils, participants discussed memory loss being dismissed as normal aging, along with stigma, embarrassment and fear. If families don't recognize what they're experiencing, reaching them through research becomes much harder.

3. Diagnosis can give families power.

Even without a cure, diagnosis gives families an opportunity to understand what is happening, plan, find resources and participate in research.

4. Our communities have been underrepresented in research.

Participants discussed mistrust, fear of being treated like a “lab rat,” and concerns about whether research reflects their communities. Trusted community members may be one of the strongest bridges into research.

5. Access to care is a major concern.

Participants described long waits for specialists, language barriers and difficulty navigating dementia care. These experiences give us important questions that deserve further investigation.

6. Our communities have common ground.

Although our experiences are different, participants from all three councils discussed what it feels like to be treated as “the other.” Those experiences affect how people enter healthcare and research spaces.

7. We may have more collective power than we realize.

Three councils, community relationships, institutional connections, lived experience and community-generated data give us an opportunity to become what someone in the room called the “boots on the ground.”

WHAT WE HAVEN'T DECIDED

Three important questions remain.

Do we need more research, or should we begin acting on knowledge that already exists?

Who builds the bridge between what communities tell us they need and what researchers already know?

And perhaps most importantly:

How do we organize ourselves now so we're prepared when opportunities arise?

WHERE WE GO FROM HERE

We already agreed on some first steps: share our workshop findings, bring potential research questions back to our councils, communicate across councils and continue creating opportunities for community members, researchers and decision-makers to hear directly from one another.

But perhaps the biggest finding from the AI analysis is simply this:

We already know a lot.

The knowledge is already sitting inside our communities and inside these councils.

Our next step may be to organize it, validate it together, identify what's missing and decide collectively:

What do we still need to research — and what do we already know enough about to start acting on?

As someone said during the retreat:

“I wish we would have started some of that four years ago.”

Then let's start now.

This is an AI-assisted synthesis for discussion, not an official statement or consensus document from any participating council or institution.