Dow Farley noticed his wife Krystyne had begun forgetting things.

She would wipe down the kitchen counter, then return five minutes later to wipe it down again. She would tell Farley it was time to walk the dog when she had already walked the dog. Those instances occurred in late 2013, and at the time, Farley laughed them off as a bit of forgetfulness.

It became like a “50 First Dates” scenario, he described, referencing the movie where Adam Sandler’s character romances Drew Barrymore’s character, who has short-term memory loss. But Krystyne’s memory problems took a more concerning turn at the El Paso middle school where she worked: She started repeating lessons she had already taught.

About a year later, after a series of tests from sleep studies to psychological exams, Krystyne was diagnosed with early onset Alzheimer’s disease. She was in her early 50s. The disease took her life in early 2021.

Researchers estimate El Paso has one of the highest rates of Alzheimer’s in Texas. A report published earlier this week in Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association analyzed demographic and cognitive data in more than 3,000 U.S. counties.

El Paso County ranked 10th among all U.S. counties with a population of 10,000 people or more aged 65 or older. An estimated 15% of this age group in El Paso have Alzheimer’s, according to the study, which was funded by the U.S. National Institutes of Health. In Texas, Alzheimer’s is most prevalent in border counties.

But the Alzheimer’s rate in El Paso could be higher in the overall population, said David Hernandez, executive director of the Alzheimer’s Association, West Texas chapter. He takes into account people like Krystyne Flores Farley, who developed Alzheimer’s and died before turning 65.

Estimated rates of Alzheimer’s disease in Texas counties, published July 17, 2023. (Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association)

El Paso has a high prevalence of type 2 diabetes and cardiovascular disease – conditions that raise the risk of developing dementia and accelerating the decline in mental function. Older Hispanic Americans are one-and-a-half times more likely than older non-Hispanic White Americans to have Alzheimer’s or other dementias, and older Black Americans are twice as likely, according to the Alzheimer’s Association.

While there is no cure for Alzheimer’s or dementia, the umbrella term for cognitive decline, early diagnosis and treatment can prolong someone’s quality of life, Hernandez said.

“There is such a stigma, especially around Hispanic culture, about having those conversations with the physician,” Hernandez said. “People are very much afraid of knowing they may have cognitive decline. It’s something we are trying to raise awareness of. We consider ourselves in the era of treatment.”

When a person doesn’t remember where they left their keys, they might begin retracing their steps, which is a normal part of problem solving, Hernandez explained. But if a person has no clue what they did earlier that day, that’s a sign to start having those conversations with a physician, he added.

Early detection key as science progresses

Oftentimes, clinicians have to ask their patients to open up about memory loss, said Guillermina Solis, a geriatric nurse practitioner in El Paso.

When evaluating a patient for changes in memory, doctors and nurses also have to evaluate for other diseases, such as diabetes, because delaying treatment for those diseases can worsen the symptoms of Alzheimer’s, she said. High blood pressure, for example, puts people at risk for strokes, which destroys parts of the brain and could lead to vascular dementia.

Dr. Ismael Rodriguez at University Medical Center of El Paso said the community needs to take a two-prong approach to dementia: Promote early detection and prepare resources to care for the elderly population with dementia, particularly as the Hispanic population could see a large increase in Alzheimer’s and other dementias in the coming years.

Rodriguez works in internal medicine, specializing in geriatric health care. There are tests available to assess whether a patient is showing signs of mild cognitive impairment, also known as MCI or pre-dementia. Some primary care physicians don’t feel comfortable diagnosing their patient with MCI, but should refer them to a geriatric doctor or neurologist who can, he said.

“We as a society think dementia is a normal process of aging,” Rodriguez said. “We think it’s inevitable as we age and a lot of people brush it under the rug as, ‘Oh, I’m old.’ That’s absolutely not the case – dementia is not a normal process of aging.”

Dr. Ismael Rodriguez, physician at UMC who specializes in geriatric medicine. (Courtesy of UMC)

The current Alzheimer’s drugs approved by the U.S. Food and Drug Administration tend to work best for people in early stages of the illness, he said. He prescribes cholinesterase inhibitors, which can help reduce or control symptoms. Sold under various brand names, they may only result in marginal improvement of symptoms, they’re also relatively safe to take, Rodriguez said.

Newer drugs aim to slow progression of the disease itself in early stages of Alzheimer’s.

“The problem with dementia, it’s diagnosed when it’s very obvious so it’s already too late,” Rodriguez said. “All these new medications are to be used even before dementia, when you are still very functional and have mild cognitive impairment.”

One of the new, but not yet FDA-approved treatments comes from pharmaceutical company Eli Lilly. Almost half of the patients who took donanemab did not show signs of cognitive decline in the first year, according to results from the company’s late-stage clinical trial of more than 1,700 participants who took either a placebo or donanemab. 

The vast majority of trial participants were non-Hispanic white people, however, and the drug only delayed progression of Alzheimer’s by about four months on average, researcher Jennifer Manly wrote in the Journal of the American Medical Association.

The trial results were announced on Monday at the Alzheimer’s Association International Conference, less than two weeks after the FDA approved lecanemab, another drug manufactured jointly by Esai and Biogen. Unlike the older drugs on the market, which come in pill and patch form, donanenmab and lecanemab must be administered via intravenous infusion at a clinic with patient monitoring.

Coronado High School student Angie Li and Eastwood High School student Salem Hernandez from El Paso rally in Washington D.C. for better health care coverage of new Alzheimer’s drugs on DATE. (Courtesy of Alzheimer’s Association, West Texas)

Lecanemab is not widely available yet and comes with an annual price tag of $26,500. The federal government announced Medicare for people age 65 or older will cover the treatment, but patients could still be on the hook for more than $5,000 out of pocket each year depending on their plan, the Kaiser Family Foundation reports. 

Rodriguez said he would like to see more independent trials and expressed concern over the new drugs’ risk for brain swelling. But the new drugs also open the door to better, cheaper and more accessible medication, he added.

In the meantime, El Paso needs to increase its health care providers in an already stressed system, Rodriguez said. If the population with dementia grows, there may not be enough home aids, nursing facilities and specialty doctors to care for these people, he said.

“We need health experts, we need hospitals to take care of all this population that will develop dementia at some point,” Rodriguez said. “While looking for a cure, we need to face reality as a community. We’re not ready for what’s coming and we need to allocate resources to take care of this population.”

Dementia caregivers take on challenging role

Solis remembers the changes in her sister Lucia’s behavior. 

She serves as one of her sister’s caregivers and teaches at the University of Texas at El Paso, where her research focuses on Hispanic health disparities in end-of-life decision making.

Guillermina Solis, nurse practitioner and associate professor of nursing at the University of Texas at El Paso. (Courtesy of Guillermina Solis)

Lucia, a former intensive care nurse, had always been a self-sufficient woman, Solis said. The oldest of 10 siblings in a family that emigrated from Mexico, Lucia took on a matriarchal role and inspired Solis to go into nursing too.

But in her mid- to late-60s, Lucia began withdrawing and avoided socializing. She hid household belongings where people couldn’t find them. Her family thought she might have depression.

A PET scan of her brain later confirmed Lucia has Alzheimer’s. The scan showed Lucia’s brain had deteriorated considerably and some areas shrunk, Solis said. 

Solis said dementia progresses differently in different people, so she can’t give her patients the number of the years they have left in their lives. What her patients fear most are forgetting their loved ones and becoming a burden on their family, she said. 

“When you talk about wills and power of attorney, putting those things in order, they look at me like, ‘Are you telling me I’m going to die?’” Solis said. “That’s not what I’m saying, but those are the difficult conversations to have.”

She joined the board of Alzheimer’s Association, West Texas chapter because she supports Alzheimer’s research and help to caregivers. The association hosts online and in-person meetups for caregivers throughout the year.

Nurse practitioner and caregiver Guillermina Solis with her sister Lucia, who has Alzheimer’s. (Courtesy of Guillermina Solis)

Many caregivers have to leave their jobs to care full time for their loved ones because they can’t afford a long-term care facility, said Hernandez, who experiences dementia in his own family.

“If you look at the border region, we have a significant number of underserved folks,” Hernandez said. “My family couldn’t afford it. It was a whole family affair to take care of my mother. My aunt, even though she’s in foster care right now, requires family members to take time out of their day to help, both financially and time wise.”

When his mother’s condition made her agitated, he would call the Alzheimer’s Association helpline for guidance. The helpline is open 24-hours, seven days a week at 800-272-3900.

Farley said he’s participating in an annual fundraiser, the Walk to End Alzheimer’s taking place on Nov. 11, in memory of Krystyne. As caregivers, he and Solis hope the latest advancement in Alzheimer’s drugs will usher in more options for families like theirs in the future.

‘You have to keep moving forward’

After her diagnosis, Krystyne and Farley drove to Phoenix every month to participate in a clinical trial for an Alzheimer’s pill and for about the first five years, the disease progressed slowly enough that Krystyne could still drive, walk the dog and go to the movies. But her Alzheimer’s advanced quickly after that. Farley had to put a tracker on her wallet and phone. He added extra locks to the door because she would try to take off. She stopped bathing and feeding herself.

Taking care of Krystyne involved not only Farley, but a rotation of family members, friends and eventually a caregiver who was hired to come for a few hours every day. It’s easy to neglect your own wellbeing when you’re taking care of another, he said.

Krystyne Flores Farley, who died of Alzheimer’s in 2021, is pictured with her grandchildren Charlee and Oakley. (Courtesy of Dow Farley)

But he likes to remember the Krystyne, or Krysty as he calls her, from before the disease consumed her.

They met in 1998, set up by his brother and sister-in-law in a sort-of blind date.

She volunteered at her church, and although he wasn’t Catholic, he went to church with her because he felt the presence of God was important in their relationship. He attended marriage preparation classes so that after their civil ceremony, they could have a Catholic one.

Holiday traditions mattered to her. Christmas and Thanksgiving drew 30 to 40 relatives to their house and Krysty saw herself as the leader of her cousins, he said. His children from a previous marriage became her children, his grandchildren hers. She ate 12 grapes on the New Year’s Eve countdowns, and on the stroke of midnight, walked around the block with luggage to welcome in a year with travel, swept the porch to get rid of “bad ju-ju” from the previous year.

When COVID-19 surged in El Paso, Krysty’s family moved her to a foster home where she spent the last months of her life. He and Krysty’s mom Bertha Flores came almost every day to see her through the window or talk to her from the backyard. The grandchildren’s visits brought a smile to her face, as did mentions of their dog, a blue heeler named Pippa. He told her Pippa missed her too.

Krysty died on Jan. 16, 2021.

“For people that are going to go through this, you have to keep moving forward and never, ever, ever give up,” Farley said. “I still think even though Krysty wasn’t Krysty, she knew when her mom was there, she knew when I was there. You don’t ever stop. And you never stop loving.”

Priscilla Totiyapungprasert is a health reporter at El Paso Matters and Report for America corp member. She previously covered food and environment at The Arizona Republic. You can follow her on social...