Photo by Kamp Fender.
Carrie Richardson, left, and her daughter, Hannah, are third and fourth generations in a family with early-onset Familial Alzheimer’s Disease, also known as eFAD. Hannah has become active in Alzheimer’s advocacy in the Homewood community and plans to attend Washington University in St. Louis to study neuropsychiatric research.
Carrie Richardson didn’t fully understand her father’s early-onset Alzheimer’s disease diagnosis until after his death, when she was just 15.
So when she found out she had the same gene and would almost certainly someday receive the same diagnosis,Richardson wanted to make sure she didn’t repeat that mistake with her own children.
“It’s like a big wakeup call, and for me it was like, who’s going to advocate for my kids?” she said.
Now, Carrie Richardson, 37, is involved in advocacy for Alzheimer’s patients in Montgomery and her daughter, Homewood High School senior Hannah Richardson, is following in her footsteps.
“Growing up watching her do that kind of inspired me,” Hannah said.
Early-onset Alzheimer’s occurs in only about 5 percent of Alzheimer’s patients, according to the Alzheimer’s Association, and it is defined as developing symptoms before age 65.
Carrie Richardson said it can sometimes be hard to get the correct diagnosis.
“Nobody wants to give a 36-year-old an Alzheimer’s diagnosis,” she said.
The symptoms are often the same as Alzheimer’s in senior citizens: memory loss, confusion, mood or personality changes, difficulty with problem solving or everyday tasks, poor concentration and withdrawal from everyday life. However, she said early-onset symptoms often seem to progress more aggressively.
Some types of Alzheimer’s have a genetic component, including hers. Carrie Richardson said her father, three uncles and one cousin have all died due to the disease in their late 30s to mid-40s. Her brother is in the moderate symptom stages.
Carrie Richardson said her grandmother also had Alzheimer’s, but at the time it wasn’t well studied and she was considered to be “crazy.”
In 2010, Carrie Richardson said her family sent samples from her father’s brain to Washington University in St. Louis for a study and genetic testing. She and her brother found out in 2012 that they both carried the same dominant gene for the disease that their father had.
Photo by Kamp Fender.
Hannah Richardson, left, with her mother, Carrie. Hannah started the local chapter of Youth Movement Against Alzheimer’s after she and her family moved to Homewood in her junior year of high school. She is working with a sophomore student to take over leadership of the Homewood High chapter once she graduates this month, though Hannah said she hopes to still be able to provide some support to the chapter after she leaves.
While she is currently asymptomatic, she said having that gene gives her a “99.9 percent” chance of developing early-onset Alzheimer’s. She is currently on a trial drug for it.
“My mom always told me that, ‘Oh, well, your aunt Judy didn’t have it. You’re not going to have it.’ Clearly I knew that was not a thing, but it stayed with me for a long time,” Carrie Richardson said.
So when she found out she had the gene, “it was one of those, you know, punch you in the face or in the gut moments for me because I was honestly pretty sure I wasn’t going to have it.”
Carrie Richardson said she didn’t grasp her father’s disease in his lifetime and often found him weird or embarrassing. It caused her to miss out on valuable time with him, she said.
So, she decided to be open and honest with her own three children, including Hannah, then in fifth grade.
“Luckily for me, they all handled it well, and she just kind of took it to the next level,” Carrie Richardson said.
Hannah said while she may not have fully understood her mother’s diagnosis at first, she grew up knowing about it and participating in walks and other fundraisers for Alzheimer’s.
“It’s not just old people forgetting things,” Hannah said. “It’s going to affect you at some point in your life.”
Attending walks and conferences together has been a bonding experience, Hannah said.
However, as a freshman, Hannah said her classmates didn’t believe that anyone could really develop Alzheimer’s disease so young. She realized how little most people know about the disease and its effects, so she decided to emulate her mother’s advocacy at a younger level.
“That really upset me, it kind of pushed me to want to educate the younger generation about it,” she said.
When she moved to Homewood for her junior year of high school, Hannah got started on creating a local chapter of Youth Movement Against Alzheimer’s. She said she was pleasantly surprised by the response and now has a dozen or so members in the chapter.
This school year was their first active year, and Hannah said they did activities such as fundraising for the Walk to End Alzheimer’s and hosting guest speakers. In April, the chapter helped Alzheimer’s of Central Alabama pack and deliver Easter meal baskets to families of Alzheimer’s patients.
Miller Piggott, the executive director of Alzheimer’s of Central Alabama, said the nonprofit was founded by members of a local caregiver support group in 1990 and is strictly focused on fundraising for local education, research and family support.
“The money that we raise stays here in Alabama to help Alabama families,” Piggott said.
The organization provides a number of support services for families, including Project Lifesaver tracking bracelets, adult day care scholarships and incontinence supplies. They deliver meal baskets for Independence Day and Christmas, and Piggott said 2019 was their first time doing Easter deliveries.
“Fifty percent of the families on our programs have monthly incomes of less than $1,000. … The food and sundries that we can provide a few times a year can really make a difference,” Piggott said.
Piggott said she first spoke with Hannah and the Homewood chapter back in the fall, and they were “eager for something concrete that they could do.”
“We’re just thrilled to have the students from Homewood participate,” she said.
Photo by Kamp Fender.
From left, Homewood High students Erica Bradley, Hannah Richardson, Jacob Richardson and Isabella Prosle are given posters to promote a food drive by Alzheimer’s of Central Alabama’s Vance Holder, center.
Piggott said Hannah “ought to be applauded” for her decision to take action in the face of a disease that has impacted her family in so many ways.
Outside of work with Alzheimer’s of Central Alabama, Hannah said she also helped organize the last Walk to End Alzheimer’s.
She is working with a sophomore student to take over leadership of the Homewood High chapter once she graduates this month, though Hannah said she hopes to still be able to provide some support to the chapter after she leaves. She would like to see them get more involved in volunteering and community activities.
This fall, she’ll set her sights on a new goal. Hannah will be attending Washington University in St. Louis and studying neuropsychiatric research. She said she hopes to start interning as quickly as possible, perhaps even with the scientists on the study her family has participated in.
Hannah said the future is somewhat complicated by her family history, however. She has not had genetic testing to see if she carries the same gene as her mother, but she will probably get the test sometime soon.
If she does have the gene, Hannah said she doesn’t want to spend a long time in school when she knows her years may be limited.
“That’s really hard news to hear when you’re 18, going into college,” Hannah said. “… It can really take a toll on your mental state knowing that.”
However, right now she and her mother are focusing more on the exciting potential of her college years.
“Everything that she does academically and for Alzheimer’s is amazing,” Carrie Richardson said.
“… But we’re counting on her to find a cure.”