Metro-east man shines a light on his mother’s battle with Alzheimer’s in film

Herb Caldwell remembers his late mother, JoeAnna Caldwell, as a beacon of light that not even a degenerative brain disease diagnosis could dim.

“[She was] just a person who loved hard, believed in family, believed in community,” Caldwell recalled with a smile. “[She was] smart, quirky, courageous, and she showed up for people.”

JoeAnna Caldwell — “Mama Joe” to all who knew her — was a fixture in Jacksonville, Illinois. The Alton native was known for her dedication to her family, faith, social work, community and volunteerism stateside and abroad. Her life of service would ultimately earn her top recognition from mayors, governors and even former President George H.W. Bush.

However, her call to service would evolve and expand to her family following her diagnosis of early-onset Alzheimer’s disease. Herb Caldwell recalled missing some of the early signs. But a phone call with his mother gave him pause and cause for concern.

“I left it flabbergasted because it appeared as if my mother was lying and rewriting history, and it was really strange,” said Caldwell. “So after 35 years of knowing her to be nothing but a person of integrity, teaching us the truth, showing us the truth, why would you say things that are not true? But now we know there were changes in her brain and the dementia was at work.”

According to research from the Alzheimer’s Association, Black people are twice as likely to be diagnosed with the degenerative brain disease. Nearly two-thirds of people living with Alzheimer’s are women. However, Black women, like JoeAnna, face higher odds of receiving the diagnosis. As a Black woman over the age of 60, she had met the three highest-risk factors for Alzheimer’s.

“A lot of it starts with some pieces that are just out there in society,” Caldwell said. “Stereotypes. The fact that Black women are not believed about their level of pain, about them not having expertise on their own bodies, and then the lack of information that we had.”

Caldwell and his family launched the Mama Joe Project based in St. Louis. It’s since become an emerging national leader with a mission of educational outreach while connecting people to information and resources to navigate care and remove stigma. Their documentary, “My Mama Joe, Hope & Help” is a core part of that mission. The film explores the realities and challenges of caring for their mother living with Alzheimer’s.

“When you’re dealing with caregiving, when you’re dealing with dementia, folks often do so in secrecy and shame,” he said. “We wanted other families to know that they’re not alone and this is something that we’re dealing with. So giving a face to a condition that’s growing increasingly common and having conversations about it, I think when you do that you give power to community so people don’t have to feel alone.”

That’s why the nonprofit is pushing the importance of information and education through advocacy work so other families can bypass hurdles. Caldwell, the film’s producer as well as the coordinator of outreach for the project, said as a family caring for their matriarch, some of the biggest obstacles they faced was the lack of information and resources available to them as well as advocating for better care as their mother’s primary care physician dismissed their concerns as part of the “normal aging process.”

“No, she’s not just aging,” he said. “Dementia is not a part of the normal aging process. So for our family [we were] always having to fight. Always having to push back. Some individuals don’t realize that they have that power, that agency to be able to question the physician. So this is part of the education that we do with our family’s story and the film itself.”

Even as the disease progressed, his mother maintained her quick wit and her core belief that she was a “child of God.” JoeAnna Caldwell died in 2024. Her death has been a heavy loss to process and grieve for her family. Caldwell still reminisces about the time he was able to spend with her.

“I could still kiss her,” Caldwell said. “I could still tell her jokes. I’m quite tall at nearly 6 foot 8. My mother used to crack up laughing about me goofy dancing. There came a time when she couldn’t recall my name unless I was right in front of her. My mother was such a wise person that I felt like she told me and showed me so much before I was even age 21 that people often get in a lifetime.”