Unmasking Alzheimer’s disease

People with early-onset Alzheimer’s disease describe why they enrolled in clinical trials through the Dominantly Inherited Alzheimer Network (DIAN), in a new book of portrait photography.

By Rebecca Horne

13 November 2023 | 2 min read

https://doi.org/10.53053/DJZD5216 Cite this article

Photography by Joe Wallace

Too often, a diagnosis of Alzheimer’s disease cuts the person off from the world, says Joe Wallace, a Massachusetts-based photographer. Motivated by his own experiences with family members with dementia, he wanted to create a more nuanced picture of people living with the disease. So at the suggestion of a doctor he knew, he reached out to Randall J. Bateman, director of the Dominantly Inherited Alzheimer Network (DIAN), which studies a form of of Alzheimer’s that affects people in their 30s to 50s.

“It’s a special and rare group,” Wallace says. “Because they have a very young diagnosis, they are already considering what a life with dementia will be like. They all know they have a terminal illness, yet they have the courage to participate [in the studies] for the benefit of others. Their courage added a powerful narrative to the overall project.”

The result of the collaboration is a new book from MIT Press, “The Day After Yesterday,” published 3 October 2023, which features portraits of and interviews with people with younger-onset Alzheimer’s disease.

“This book illustrates the essence and spirit of the millions of people with Alzheimer’s disease and their families,” Bateman says. Here we showcase some of those stories and why these DIAN participants chose to enroll in research trials, in their own words.

“I was 11 when my mom passed, and I remember her,” says Bama Bradley. “I have a daughter now, and I want to make sure that she knows everything she can so she can beat it. She has a 50-50 chance of having the mutation, so I want to learn as much as I can — not only for myself, but maybe a cure someday. Maybe I can assist in that. That’s what I want to do.”

“I’ve been married for five years, but it’s not long enough,” Bradley adds. “I have an awesome husband. I chose a good one. He’s really patient and very kind all the time. If he weren’t around, I wouldn’t be able to do it. We went to college together, and I told him, ‘Look, you’re here or you’re not. I could potentially be crippled.’ And he’s like, ‘I’ll carry you.’ That’s how I knew he was mine.”

“I’m 45 and have been in the trial for six years,” says Daisy Duarte. “I enrolled in the clinical trial, and the rest is history. I’m still here … I travel all over advocating. It’s a passion for me, because I refuse to go down, just letting Alzheimer’s take over me. It might take me down. I’m not going to lie. It might. Do I fear it? No! Because I know I’m fighting it.

“It doesn’t matter how far gone they are into the disease. They still have ears, and they still have a beating heart. You always, always want to show them compassion, love and respect. So, whatever you say negative in that room, they’re still taking it with them. They’re still taking it in, so just treat them the way you want to be treated. Just treat them with respect and love. That’s one thing I always did for my mom.”

“My brother Bryan was the first to have the genetic test done,” says Carrie Salter-Richardson. “Bryan and I are 18 months apart. We’ve always been best friends. He was always the best at everything. He excelled at sports and performing arts. He was popular and outgoing and the funniest person I know. When I got the phone call that he had tested positive for the gene, a piece of me died.”

“On December 4, 2012, I drove to UAB (University of Alabama at Birmingham) to hear my results,” Salter-Richardson adds. “I remember sitting in a little room for what seemed like hours waiting for the doctor and genetic counselor. When the door finally opened, I knew my answer. It was written all over their faces. But to hear the words “It’s not good news” took the wind out of me. I showed little emotion while the doctor was talking. I just nodded my head and thought about sitting in that nursing home with my dad. I thought about how I would tell my children. Would they too pray for my death? I knew there were many people waiting for my phone call and hoping for good news. I dreaded making those phone calls.

“For a few weeks, I let it consume me, felt sorry for myself and spent a lot of time crying. But I knew there were three people who depended on me, so I decided to make a lifetime of heartache into a quest for hope. I joined a clinical trial through DIAN. I became a volunteer for the Walk to End Alzheimer’s, which led me to become a congressional ambassador for the Alzheimer’s Association.”

“I just feel like DIAN has made such a difference to so many families, because this research directly impacts everything; almost all the advances that have been made in the last decade as far as understanding this disease, maybe not treating it yet, but understanding it, is from the data they’re getting from us, and without us we would still be just sitting and waiting. I don’t think anybody wants to do that,” Gentle Vandeburgh says.

“It’s the only thing I can do that I feel makes any kind of impact for my future and for the kids. For my kids and everybody else’s. I’m not a scientist. I’m not a doctor. I don’t have that skill set. I’m not a legislator, all those things. This is what I can do. I can let them look in my head, and I can take these tests and go through this, which is not easy, but that’s what I could do.

“I feel like DIAN at least has done a really good job of at least making me feel like that’s helpful. I’m doing something, because the very worst thing was watching Dad get sick and watching Grandma get sick and being helpless, not having any kind of recourse at all and just having to sit and watch that happen and wait for it to happen to you.”

“In my career, there’s a lot of sleep deprivation and stress,” Andres Martin says. “I had started taking medications for a trial, for the DIAN trial back when I was at Camp Pendleton, and for some of those medications, there were unknown symptoms. That’s kind of the way I got grounded from flight. They were supportive. They helped me get to Walter Reed. I’ve been fighting for medical retirement, so I will have all the medical benefits getting out.”

“Everything should be for the next generation,“ Martin notes. “You might be scared, but the most important thing in life is your children.”

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