'It's Not Over.' Macon Woman With Alzheimer's Chosen For Board Of Global Organization

Caption

Arthena Caston, 54, has been diagnosed with early onset dementia.

Credit: Jason Vorhees/Macon Telegraph

At the age of 51, Arthena Caston was diagnosed with the early-onset Alzheimer’s disease.

Although her father and several of his siblings suffered from Alzheimer’s, she had a hard time believing her diagnosis, she said.

“You don’t want a diagnosis like that because all of a sudden, everything changes,” she said.

She retired from her job and learned to live with Alzheimer’s disease, a type of dementia that impacts memory, thinking and behavior.

More than four years after her diagnosis, Caston, of Macon, works to inspire other people with the disease in her new position as a member of the Board of Directors for the Alzheimer’s Association, an organization that works to eradicate Alzheimer’s disease and other types of dementia. She is one of two members living with dementia to serve on the board, according to a news release.

 “This is where I want to be. This is what I’m gonna do,” Caston said. “My biggest motivator is knowing that I can help someone else. I can help someone else to feel like they can keep going.”

Becoming An Activist For Those With Alzheimer's

More than 5 million Americans are living with Alzheimer’s, and that number is projected to rise to nearly 14 million by 2050, according to the Alzheimer’s Association’s website.

Caston said she is astonished and excited to take on this new role, and she hopes she and the other member on the board with dementia can bring their perspectives of what it is like to live with the disease.

“We can tell them what they need to know. We speak for those who can no longer speak for themselves,” she said.

Caption

Arthena Caston walks her dogs around her neighborhood in North Macon. Caston, 54, has been diagnosed with early onset dementia.

Credit: Jason Vorhees/Macon Telegraph

Almost two-thirds of Americans who have Alzheimer’s are women, and older African Americans are twice as likely to have a type of dementia than older white Americans. Hispanic people are 1.5 times more likely to have dementia than older white Americans, according to the website.

As a Black woman, Caston said she wants to reach out to other Black women and everyone with Alzheimer’s to let them know having the disease is nothing to be ashamed of.

“People don’t want to discuss it…. People think that it is something that’s a natural part of aging. They just think that that’s what’s going to happen,” she said. “Alzheimer’s is not a natural part of aging.”

Living With Alzheimer's

When Caston was diagnosed, she was devastated. After watching her father suffer from the disease, it was not what she wanted for herself or her children.

“It wasn’t like I didn’t know. It’s just like I think I didn’t want to know,” she said.

However, over the past four years, she has not only learned how to live with the disease, but she has also helped others.

“You can live joyfully with Alzheimer’s. Don’t say, ‘Oh my gosh, it’s over.’ It’s not over. It’s just a different way of living,” Caston said. “What keeps me going is the fact of knowing I can help other people feel like they can keep going.

A common perception of people with Alzheimer’s, Caston said, is that all they can do is sit around and watch television, but Caston said she wants to change that belief.

In the past two years, Caston has served on the Georgia Board of Directors for the Alzheimer’s Association and the association’s Early Stage Advisory Council.

Her biggest motivator is her husband, Virous Caston, because he’s the one who tells her everything is going to be OK, she said.

“If I wake up in the morning, and I know my name, and I know what today is, it’s gonna be a great day,” she said.

This story comes to GPB through a reporting partnership with the Macon Telegraph/Macon.com