Every year, roughly half a million Americans are diagnosed with Alzheimer’s disease, one of the most common forms of dementia. Women represent more than two-thirds of those diagnosed, and researchers do not entirely understand why. What they do know is that early identification and intervention can help women manage symptoms, plan for the future and take control of their lives after an often frightening diagnosis.
“I think the medical community, we tend to have an ostrich approach of putting our heads in the sand and not wanting to be straightforward that we’re detecting a problem because we’re concerned about the psychological impacts of that on the patient,” said Elizabeth Bevins, a neurologist at University of California, San Diego, and an expert on Alzheimer’s. “But I think what we overlook is that uncertainty is its own burden.”
Kerry Dennis, 61, has always lived in the shadow of Alzheimer’s, but she purposefully avoided thinking about it.
Dennis lives in Auburn, New Hampshire, with her husband. She has three children and one “bonus kid” from her husband’s previous marriage.
“I have a long history of Alzheimer’s in my family,” Dennis told The 19th. “I lost my mom. My uncle’s living with the disease. My grandmother and grandfather had dementia, so it was always there.”
But then Dennis began struggling at work. She was a vice president of advisory services at Fidelity Investments. She led a department of around 200 employees, which meant a lot of people relied on her.
“The stuff you expect to be hard got harder. But the alarming part is that the easy stuff got harder, too,” Dennis said. She struggled to write emails. Her company was undergoing a large reorganization, and during a one-to-one meeting with her boss, she realized she couldn’t remember any of the details. She went on medical leave before deciding it was time to retire.
“I would go in and say, ‘I just have to work harder. If I work harder, I’m going to be able to do this.’ And the reality is, it wasn’t in my control,” Dennis said.
What’s been in her control since her diagnosis three years ago is how she can live the rest of her life.
“The first thing that I felt was relief because I had answers. Then came the terror and all the bad stuff,” Dennis said. “But once you go through that grieving process, I could make a decision about what I wanted the rest of my life to look like. And that decision was: I am going to live the rest of my life in the most beautiful way I can.”
Dennis considers her ability to plan, which is a result of her earlier diagnosis, a gift. It means she can make decisions her own mother and grandmother were never able to make. Those decisions include financial planning — her professional background, after all. But they also include how to make the most of the time she has left.
“We got a house in Florida because we did all of the stuff we said we were waiting to do when we got older,” she said. She and her husband spend the winter there and get together with friends.
Socializing is important for maintaining brain health, according to experts like Bevins, but for Dennis, the main point is to have “wicked fun.”
Dennis also threw herself into research and advocacy. She is currently participating in two longitudinal studies, which track changes and long-term trends but don’t involve experimental treatment.
“An Uber is going to pick me up soon so I can go have a lumbar puncture. How fun is that?” she joked.
Dennis is a little more cautious about clinical trials. There are a few drugs that look promising, but they had risks she wasn’t willing to take, like brain bleeding.
“And my personal decision is I’m not willing to take that risk, especially with so much hope on the horizon,” she said.
A diagnosis was initially devastating for LauraLee Denler, 62. Her mother had Alzheimer’s, and Denler helped care for her until the end of her life. But it has also reshaped how she lives her life.
“I live with more intention right now,” Denler told The 19th.
When Denler was 59, she began forgetting things. In her work as a reading interventionist at an elementary school, she began to notice she couldn’t recognize her students or remember their names. Denler recognized some of what her mother experienced in herself. She didn’t go to the doctor right away.
“It took me a while to get up the courage,” Denler said.
Things got worse. Eventually, in 2023, Denler chose to get tested.
“I went to see my primary care physician, and she gave me a test that was pretty easy. I thought I was doing very well. And she asked me to repeat three words. I did. There was another question. I handled that fine,” Denler said. “And then she asked me what those three words were, and I just had a blank stare. I couldn’t remember even one of them. And I just looked at the ground and cried.”
Denler lives in Old Saybrook, Connecticut, with her wife and two dogs. Their son, who they adopted together, is in college.
Denler’s diagnosis has changed her life, but she still has hope for the future. Her experience is already different than her mother’s.
“My mom was diagnosed in 2003 — 20 years before I was,” Denler said. “We just didn’t know what was going on then. There wasn’t much out there about Alzheimer’s. The organizations weren’t fully developed yet. They didn’t have the treatments they have now.”
There is still no cure for Alzheimer’s, which is the sixth-leading cause of death in the United States. But there are clinical trials and approved medications to slow the disease’s progression. There are also lifestyle changes that can help improve symptoms and quality of life. The clinical trial Denler participated in didn’t pan out, so she’s decided to focus on healthy eating and increasing her physical activity. She bikes, hikes and does hot yoga three times a week. She is also careful to get enough sleep.
“Sleep is really critical.” Bevins said. “Sleep is when your body naturally clears toxins from the brain, and so it’s really important in your middle-age years to maintain really good healthy sleep habits.”
Denler prefers not to think about what she might want in the future, once her disease progresses. She has her affairs in order in the event of her death, something that she and her wife did when they adopted their son. She is optimistic about science, technology and the choices she is making to improve her general health.
Julie Chenault, 65, prefers to take things one day at a time. She lives in Walton, Kentucky, with her husband, who recently retired from being a forklift driver. They have two daughters and two grandchildren.
Chenault first began experiencing symptoms when she was still working as a sales representative for the bulk retailer Sam’s Club almost a decade ago. She had an appointment somewhere she had been to multiple times, but she forgot where she was or how to get there. She ended up calling her team to ask for directions.
“And as soon as I turned in that parking lot, I knew where I was,” Chenault said. “My memory came back that fast. So it was kind of a scary situation.”
She went to her primary care doctor, who quickly referred her to a neurologist. After a number of rounds of testing, she was informed she was experiencing the early stages of Alzheimer’s. The testing had been intimidating, and she felt frightened and upset that she couldn’t remember things.
But the diagnosis itself was, in Chenault’s words, “a relief.”
“The not knowing is what was the scary part, where the memory would just fade out.” Chenault said. “Once I knew what was happening, then I understood, and so therefore I could move forward.”
Chenault hasn’t participated in any clinical trials. There are major disparities in trial participation when it comes to race. Black Americans like Chenault are more likely to develop Alzheimer’s and other types of dementia, but few Alzheimer’s studies or clinical trials even report data on race.
“Communities lack the resources around education about the disease, but also once diagnosed,” said Deanna Darlington, one of the co-founders of AlzInColor, a campaign to increase awareness of Alzheimer’s and brain health in Black and Latino communities.
When Chenault began having memory problems, she realized she needed to get evaluated.Her mother had dementia so she recognized some of the signs. But she knows her experience wasn’t typical.
“A lot of Black women don’t have the education or the knowledge about dementia,” Chenault said. She has worked with AlzInColor to try to change that.
In terms of how Chenault’s diagnosis has changed her life, she has leaned into her daily routine and involvement at her church. Her family and pastor have been great sources of support. She has had frank discussions about Alzheimer’s with her daughters because it may be hereditary.
“You have to stay in tune with your family and what they’re going through. You can’t shut up about it.” Chenault said. “You know, some people want to just put it in a box and say, ‘Well, you know, mom, that’s how she is.’ But that’s not really what’s happening. The word needs to get out.”
