Arthena Caston was diagnosed with mild cognitive impairment and early-onset Alzheimer’s disease in March 2016. She was 51 at the time.
Not surprisingly, when she learned she had the condition, she worried about what it would mean for her life and her future. Her father had only just died from Alzheimer’s disease-related causes two years before.
‘Is This Really Happening to Me?’
Courtesy of Arthena Caston
“I still think about the day my husband and I got the diagnosis,” she says now. “There was this clock on the wall in the doctor’s office, and I just kept looking at the clock because it was making this annoying ‘tick, tick, tick’ sound. And I thought it was just like a clock out of The Twilight Zone television show. All I could think was ‘Oh my God, is this really happening to me?’”
Although she had to quit her job as a customer service representative for the insurance company GEICO, Caston, who lives in Macon, Georgia, knew she couldn’t just sit at home with Virous, her husband of 27 years, and their two dogs, Sassy and Shippo.
It was her younger daughter, Brianna, who serves in the Air Force and is based in South Dakota, who encouraged her to share her story to try to help others. (Caston’s other daughter, Brittani, just recently left the Air Force and lives in Tampa, Florida.)
Alzheimer’s Risk Is Elevated Among Black Americans
When Caston learned about the elevated risk for Alzheimer’s disease and other forms of dementia among Black Americans like herself, she decided to make that a focus of her efforts.
Older Black Americans are twice as likely as older white Americans to develop Alzheimer’s disease, and they tend to be diagnosed at later stages of the disease, when they’ve experienced more cognitive impairment, according to Carl V. Hill, PhD, MPH, the chief diversity, equity, and inclusion officer for the Alzheimer’s Association.
“Before that conversation with my daughter, I didn’t want anybody to know; it was like this secret thing,” Caston recalls. “But my daughter said, ‘Mom, listen, people already know. Don't be ashamed. You're such an outgoing person. Why are you sitting at home every day?’”
The ‘Purple Dog Lady’ Takes to the Streets to Raise Awareness
That conversation was enough to get Caston to make a call to the Alzheimer’s Association. Pretty soon, she became known as the “Purple Dog Lady” in her neighborhood, as she made sure to wear the association’s T-shirts and sweatshirts with its official color on her walks with her dogs. She also began volunteering with her local Alzheimer’s Association chapter, educating people of color about dementia and their risk for it, and later served on the 2019–2020 National Early-Stage Advisory Group.
‘We Have to Care for Ourselves’
“I was not aware of the risk in the African American community when I was diagnosed, even though I had it in my family,” she says now. “So it’s really important to get the word out, and before COVID-19 I was traveling all over the country, speaking to African American church and community groups. My goal is to speak for those who can’t speak for themselves and tell people, especially in the African American community, ‘We have to care for ourselves.’”
Indeed, if there has been a silver lining in the cloud of the COVID-19 pandemic, it’s been that greater attention has been focused on racial disparities in access to quality healthcare across the United States. Caston believes people of color need to advocate for themselves as they strive to get an accurate diagnosis and get the best treatments available.
She has been taking the dementia drug Aricept (donepezil) once daily and says it has helped slow the progression of her condition. She’s even been working part-time at the furniture store where her husband is the manager, and she continues to live independently, though she credits her husband with being her “care partner.”
Participation in Clinical Trials Key to Turning the Tide on Alzheimer’s
The Alzheimer’s Association is also taking a leadership role in increasing awareness of the dementia risk among people of color by facilitating connections between those with the condition and the care and resources they need. Among the organization’s key initiatives is increasing the enrollment of people of color in clinical trials investigating new treatments for Alzheimer’s and other forms of dementia, according to Dr. Hill.
“Engaging communities of color, as [Caston] is doing, is vitally important in our efforts to address the 1 in 10 older Americans living with dementia,” Hill says.
‘If You Notice Something … Go to the Doctor’
For Caston, the message is clear. “I tell people, ‘If you notice something in yourself or people you know, signs of memory issues, go to the doctor, because something little can move into something really big,” she says. “And if you can, take someone with you so they can ask the right questions. I also tell them the Alzheimer’s Association is reaching into communities and they have everything you need for help and support.”