A Voice of Alzheimer’s: Debra and Chris Tann with Carol Steinberg

Debra was watching her husband’s behavior. Chris was becoming forgetful and putting items in the wrong places—and he was in denial about his symptoms. After what was then 25 years of marriage, she knew him well enough to discern that something was different. But she was clueless as to what the difference was. She did a deep dive into the scientific literature to understand what was happening. She knew it was medical, but what?

Two years later, in 2017, Chris was diagnosed with mild cognitive impairment, and by 2019, his condition had evolved into Frontotemporal Dementia (FTD).

It took finding the right doctors and the right facility to get a diagnosis. As Debra sees it, “There’s a paucity of knowledge as it relates to FTD, and it’s not at the height of the food chain [of dementia].” She gets it: the majority of cognitive impairment cases fall into Alzheimer’s, and “FTD is not the go-to,” she said. “It calls for us as advocates to have even louder voices.”

The first neurologist who saw Chris “didn’t work out,” Debra said. She started digging for another doctor, and “hit it off” immediately with a local neurologist who was spot on and handed down the FTD diagnosis.

The proper neurologist “makes a world of difference—that they take the time to listen to you and really care,” Chris said.

However, the doctor soon moved away, and Debra began another deep dive. She wouldn’t settle for the six-month and nine-month waits at other hospitals –“my husband deserves the utmost care”—and found a neurologist at Vanderbilt Research Hospital, a seven-hour drive from their home in Valdosta, Georgia.

Chris has been taking medications typically prescribed for Alzheimer’s, switching to Namenda (generic: memantine) after cholinesterase inhibitor medications worsened symptoms earlier on. He’s participating in an FTD longitudinal study at Vanderbilt—“to do anything I could possibly do to find a cure,” he said.

Chris attributes his well-being to his faith in God, participation in an outstanding support group called Black Dementia Minds, and the support of a care partner he “loves and trusts.”

The journey has transformed Debra, a long-time educator with an Ed.D., into a local and national advocate. When things started going awry, besides praying a lot, she began keeping copious notes and doing extensive research on cognitive impairment.

“My energy had to go somewhere,” she said. “But I couldn’t begin telling my story until Chris decided he was going to tell his story.”

The result: she penned a book, The Race of Dementia, became a certified dementia educator, and founded a local nonprofit organization, Reminiscent, to “educate, empower and engage” people with cognitive impairment in her local predominately African American community and beyond.

Recognized with the Bright Focus Foundation’s 2023 Community Impact Award, Debra said her ultimate objective is to involve African Americans in clinical trials— “to be educated about why it’s important to be at the table. No therapeutics are going to be developed if people [who look like me] are not at the table.” Now, a clinical trial involving Alzheimer’s biomarkers is set to begin this month in Valdosta.

Chris sings his wife’s praises. “What you see is what you get,” he said. “She’ll reach you where you are, with no hidden agenda, and show the love. I sit back and watch that even though she doesn’t know I’m watching.”

What do you want others to know about you?

Chris: I’m still Chris. I still do everything I normally do.

Debra: I’m a pioneer, and I plan to leave a legacy and footprint in this space for the work to carry on.