By Emily Williams
When Kimberly Stephens and her family found out that her mother, Karen Stephens, had been diagnosed with early onset Alzheimer’s disease while in her mid-50s, no one was prepared.
For more than four years, the family relied on Google to answer any questions they had. It wasn’t until her aunt was diagnosed in 2014 that Stephens called a helpline and found the Alzheimer’s Association Alabama chapter.
Since then, Stephens has taken on the mission to spread the word about the association and its work. One of her tactics is co-organizing the Walk to End Alzheimer’s – Heart of Alabama, which is one of 600 walks that take place in communities throughout the nation.
This year’s walk will be held Sept. 30 at Sloss Furnaces and will support world-wide research initiatives, advocacy and a range of association programs, from one-on-one patient support to online education programs.
“My mom’s diagnosis has definitely made me want to educate the community because we don’t have the conversation in Birmingham,” said Stephens, who lives in Homewood.
Covering up the Secret
While working an organization table at the Pizitz Food Hall, Stephens has noticed that people who approach the table to learn more often speak in hushed tones.
“People don’t know that you can be young and in your 50s and get it,” she said. “I think there are more 20-somethings that are caregivers than we even know about, because you do hide it.”
For that reason, she has made it a personal mission to ensure families have all resources available to them when they are given a diagnosis, unlike her own experience.
“You don’t know what to do,” Stephens said. “You’re dealing with denial in every corner … because you don’t want to believe it’s happening. You want to believe that she can still do all of those things. You want to believe that they’re not going to walk off and that they’re OK. But they’re not.”
One of the most intense struggles was the planning of Stephens’ younger sister’s wedding in 2012. It was around that time that her mother was experiencing intense mood swings in the later hours of the day, commonly referred to as sundowning.
“I wish I was more calm. I remember not being calm,” she said. “I didn’t have the tools. I didn’t know what to do.”
Though her mother was diagnosed in her mid-50s, Stephens said she now realizes the signs were there earlier. One of the most obvious tells was when her mother would get lost driving a familiar route.
“We didn’t talk about my mom’s diagnosis for years,” she said. “It was exhausting, and I know why we did it at the beginning, because she still had her mind. Her dignity is at stake.”
It was the same courtesy the family gave to Kimberly’s maternal grandmother during her battle with the disease.
More than eight years have passed, and Stephen’s mother has lost her memory entirely and requires round-the-clock assistance from three caregivers.
Through her work with the association, Stephens has had the opportunity to share her cause from the medical side and the political one.
The association is planning a partnership with UAB to put its information in the hands of doctors so they can refer patients to the association at the time of diagnosis and throughout the course of the disease.
Changing the Law
One of the biggest successes the Alabama chapter has had was reaching out to state senators and representatives to create the Silver Alert Act. The act adjusts the state law that allowed local authorities to create a Silver Alert only for missing senior citizens.
“It was passed in April and now (Silver Alert) applies to anyone of any age with Alzheimer’s or dementia,” Stephens said. “Also, police will take the caregiver’s word for it without needing a doctor’s note.”
The adjustment would have been a great help to her own family when her mother began to wander.
“You would never know she was sick when she would go missing and she’s been missing twice,” she said. “She’d go out of the house and walk down the street.”
In addition to the age adjustment, the bill requires that law enforcement agents participate in free training, offered in person or online from the Alzheimer’s Association, to recognize symptoms of Alzheimer’s and dementia and tactics to search for patients who are lost.
Looking back from her perspective today, Stephens said she often wonders whether she would have kept things quiet.
“Would I ask my mom to own this disease like I’ve seen all of these other amazing advocates do?” she said. “These early onset people in their 50s, standing up there with their caregivers and spouses … When I look at our early-stage advisory council, they are so strong to own this disease and be a part of the movement.”
Though she’ll never know what could have been, Stephens has the support of her extended family in her efforts to change things for future Alzheimer’s patients.
The family creates a team, Sitty’s Angels, to honor her grandmother, her aunt and her mother. “Sitty” is the Arabic word for grandmother.
The team is working to exceed its $75,000 fundraising goal and help the walk reach its $260,000 goal set for this year.
To join the walk as an individual or create a team, visit act.alz.org.