Beyond the Diagnosis: A Caregiver's Voice in Facing the Wind

"I didn’t choose caregiving—it chose me."In this deeply moving episode of Voices of Inclusive Research, host Dr. Renarda Jones sits down with Carla Preyer, founder of From the Salon Chair to Self-Care and advocate for dementia caregivers. Carla shares the powerful story of caring for her husband, Patrick, through his eight-year battle with Lewy body dementia—a journey filled with misdiagnoses, delays, and the emotional toll of navigating a misunderstood condition.Carla also opens up about her role in the acclaimed documentary Facing the Wind, the isolation of being one of the few women of color in support spaces, and the importance of bringing education and research opportunities to caregivers.From advocating for earlier diagnoses to using walking and wellness routines to stay strong, Carla’s story is a reminder that caregivers need just as much care as the people they support.🎧 Listen now to hear how Carla is transforming her grief into advocacy—and why community, support, and visibility in research matter.Must-Hear Insights and Key MomentsMisdiagnosis Delays are Too CommonCarla's husband went undiagnosed for four years, despite clear symptoms. Her story highlights the urgent need for early detection tools like PET scans—and for doctors to truly listen to caregivers.The Power of Support GroupsFinding a safe space through caregiver support groups changed everything for Carla. It not only led her to helpful resources but eventually connected her to a life-changing documentary, Facing the Wind.Caregiver Wellness is EssentialFrom daily walks to self-care routines, Carla emphasizes that caregivers must prioritize their health, too—because without them, their loved ones are left vulnerable.We Need More People of Color in the RoomWhether in clinical trials or caregiver spaces, Carla consistently found herself as the only Black woman. She’s now on a mission to change that through advocacy and storytelling.Research Must Reach the Right PeopleCarla learned about studies only through support groups—not doctors. It’s a clear call for more proactive outreach and culturally responsive education about clinical trial opportunities.Words of Wisdom: Standout Quotes from This Episode"I didn’t choose this journey. It chose me." – Carla Preyer"You should never try to do this journey alone." – Carla Preyer"Support groups became my lifeline. They changed everything." – Carla Preyer"Being the only person of color in the room—again and again—was heartbreaking." – Carla Preyer"We have to stop dealing with dementia in silence." – Dr. Ren"The earlier we educate, the more lives we change." – Dr. RenConnect with Carla Preyer:LinkedInWebsiteInstagramFacebookFollow Dr. Ren:WebsiteInstagramLinkedInWe Want to Hear Your Voice!Your insights on how inclusive research impacts your life and community are invaluable. Share your experiences and thoughts on how we can bridge the gap between research and real-world needs. Your stories drive our mission and inspire the future of inclusive research!