Phoenix, AZ | 2025

The Supporting Dementia Caregivers After Death Community Advisory Board (CAB) held its second in-person series of meetings at Arizona State University. We explored how people think about their own risk of developing dementia, what motivates or hinders health behavior change, and how to better reach former dementia caregivers for future research. These conversations were grounded in real-world experiences and offered valuable direction for shaping public health strategies and future studies.

Key Discussion Points

🧠 Perceptions of Dementia Risk

How do people think about their chances of developing dementia?

Members shared personal beliefs about their likelihood of developing dementia, with many reflecting on:

• Family history

• Personal health practices

• Emotional readiness to plan for a possible dementia diagnosis

🎯 Control Over Dementia Risk

Do people feel they can influence their dementia risk?

• Prevention strategies were seen as helpful by some members (e.g., healthy sleep, social engagement)

• Genetics were emphasized by some and others expressed uncertainty about controlling risk

🚧 Challenges to Behavior Change

What gets in the way of making healthy changes?

• Unclear guidance

• Lack of relatable examples

• Slow or invisible progress from health improvements

👥 Who Inspires Behavior Change

Who can deliver trustworthy messages?

The CAB emphasized that people are more likely to change behavior when hearing from someone they trust:

• Peers with lived experience

• Trusted messengers in their communities

• Evidence-based sources

• Professionals offering specific, nonjudgmental advice

📣 Strategies for Promoting Dementia Risk Prevention

When and how should we reach people?

Members emphasized the importance of early outreach with messages about dementia and preventable risk factors like social isolation and poor mental health. Suggested approaches included:

• Ads and QR codes on public transportation

• Billboards in everyday public spaces

• Public health campaigns modeled after HIV outreach

💡 Ideas for Recruiting Former Dementia Caregivers into Research

How can we connect with former dementia caregivers?

Members recommended:

• Electronic health records to identify eligible participants

• Recruitment flyers through primary care and neurology clinics

• Public events, such as county and state fairs, to engage community members with giveaways (e.g., water bottles, fidget toys, stress balls)

• Caregiver support groups, while also considering the many who never attend them

The CAB also raised important ethical and legal questions around participant outreach:

• Opt-in vs. opt-out recruitment

• Minimizing participant burden by doing most of the outreach work ourselves

Why This Matters

We plan to leverage these insights to develop and pilot an intervention for former dementia caregivers, who may be at increased risk for cognitive decline.

CAB members’ perspectives are shaping research that is:

• Grounded in lived experience

• Improving long-term caregiver well-being

• Reducing the broader societal burden of dementia