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No Shrinking Violet: Arthena Caston, Living with Early-Onset Alzheimer’s, Inspires Everyone Around Her

No Shrinking Violet: Arthena Caston, Living with Early-Onset Alzheimer’s, Inspires Everyone Around Her
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February 4, 2021
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When Arthena Caston was chosen as the newest member of the National Board of Directors of the Alzheimer’s Association — one of two members living with dementia to serve in this role — she was surprised. “To be chosen to join a group of people that includes doctors and lawyers... I said: 'Why me?’ And I was told again and again: ‘Why not you?’”

Why not, indeed!

Arthena’s Diagnosis Brought Her a New View on Life

In 2016, at age 51, Arthena Caston was in shock when she learned of her diagnosis of early-onset Alzheimer’s. “I watched the progression of Alzheimer’s disease in my father, who became a shell of himself,” she says. “I didn’t want that fate. Once I had my diagnosis, I had to take action.” Arthena called the Alzheimer’s Association 24/7 Helpline, and she was connected with her local Georgia Chapter of the Association, where she found the resources and support she needed.

Arthena wasn’t going to take her diagnosis lying down, and today, she lets everyone she meets know so. She has spent the last four years learning how to live well at this stage of the disease, and there is no holding her back.
 

Speaking Out for People Living with Dementia — And for Future Generations

Arthena explains how complicated the experience of Alzheimer’s can be. “Until these things touch you personally, you may not understand the depth. With Alzheimer’s and other dementia, you may suddenly be unable to spell a simple word, and then you understand what this disease can do. But I will not let it get me down.”

Arthena has created a strong support system. She is close with her fellow members of the 2019 Early-Stage Advisory Group (ESAG), a group that helps bring the voice of individuals living with dementia to the national forefront. That experience brought her a new form of support in the form of people going through the same things she was. “We are all brothers and sisters on this journey, connecting through social media and over weekly Zoom calls,” she says. “We are close-knit as can be! Not a day goes by that I don’t check in and make sure everyone is doing okay, and I am always there on the days that are more difficult for one of our group. We are facing the isolation of the pandemic and Alzheimer’s and other dementias together.” In addition to her role as an ESAG member, and prior to joining the national Alzheimer’s Association board, Arthena served on her local Georgia Chapter board, which she continues to be involved with.
 

Driven By Purpose, Passion and Great Sense of Humor

Today, Arthena has a renewed sense of purpose for sharing what life is like living with early-onset Alzheimer’s. One of her passions is breaking the stigma of Alzheimer’s and other dementia in the Black community. “Through our shared history, we have faced a lot, and as a Black woman, I am always trying to help other people living with dementia face that reality, and help educate my community about the truths of the disease.”

Arthena’s sense of humor is stronger than ever, and she enters each day with a positive outlook. She shares this same view with everyone she meets, saying: “I am so lucky to wake up and know my name, and what day it is today.”

When she learned that she was elected to the National Board, her husband congratulated her, telling their dogs Shippo and Sassy: “Mom is a celebrity!” Arthena says: “No, I am just me.” But anyone who meets her knows that she is a larger-than-life presence in the Alzheimer’s community, and a star in her own right, for spreading awareness and inspiring those around her.

As a Black woman, Arthena 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, to help break down the stigma that surrounds a dementia diagnosis. “Everybody needs somebody,” she says. “Although this road can be a lonely journey, especially if you have no one to talk to or support you, I try to be that support for others in my situation in my community, and people all across the country.

As for her role on the board? She is excited to share her own insights and perspective of what it is like to live with dementia. “We have the chance to speak for those who can no longer speak for themselves,” she said. “That is so important to me.”

Today, at age 54, Arthena is ready to help other people living with Alzheimer’s and other dementia face the reality of a diagnosis, and help educate those who aren’t familiar with how it affects millions of people across the country. Today, the strong support system she has built around her — including family, friends and fellow ESAG members — has inspired her to encourage others to build their own. “Being able to help others keep moving forward positively gives me even more strength on my own journey.”

About: An advocate, fundraiser and voice for those living with dementia, Arthena lives in Macon, Georgia with husband Virous, and recently welcomed a new grandchild. She is passionate about sharing her voice on behalf of the Alzheimer’s cause, saying: “There isn’t one person I’ve met who hasn’t heard me talk about it!” Prior to her diagnosis, Caston worked in customer support for a large insurance company.

Related articles:
What is Early-Onset Alzheimer's?
The Alzheimer's Association Early-Stage Advisory Group

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