Hope amidst hardship: Nevada family fights for treatment

Data appearing in the Alzheimer’s Association® 2025 Alzheimer’s Disease Facts and Figures report highlights the perspective on early detection of Alzheimer’s disease. Roy’s wife, Tracy, was showing signs of cognitive decline, but the couple didn’t feel as though their concerns were taken seriously by Tracy’s doctor. Roy shares the struggle they faced getting his wife’s diagnosis. In his mind, her delayed diagnosis and subsequent treatment stole time the family can never get back.

Family and faith

Tracy was born in Southern California and raised by two loving parents. She earned a degree in music education and had just started working on getting her teaching credential when she was given an opportunity to travel to Japan to teach English. Tracy spent the next 14 months in Japan as a missionary before returning home to finish her credential. Back in California, she met her husband, Roy.

The couple had two children, and when the kids were still little, the couple did something unique. Together with three other families, they packed up their lives and moved just outside of Carson City, Nevada, where they built a church, and eventually a community, from the ground up. While both Roy and Tracy are pastors at their church, Tracy’s primary focus is working with children.

“Tracy just fell in love with teaching kids and coupling that with faith,” said Roy. “She built a volunteer team of 80 people with hundreds of kids on the weekend. She oversaw that, not just pouring into the kids but pouring into the volunteers. 

“She was raising the standard of how important kids are and championing the idea that kids aren’t just meant to be shoved aside and out of sight. You can make church fun, educational and something that is going to shape their lives. That’s exactly what she did for 30 years, I couldn’t be more proud of her.”

Trouble with words

While in college, Tracy minored in English and has spent much of her life lovingly correcting Roy’s grammar. In 2021, Tracy noticed in herself that she was having difficulties either remembering or spelling words. Understandably concerned, she went to a doctor to find out what was wrong.

However, Tracy was limited by what kind of testing she could do because of the type of insurance she had. At the time, Roy and Tracy’s insurance was a type of health sharing co-op. The co-op covers them for something catastrophic, but they were required to pay out-of-pocket for services until they meet the $12,000 deductible.

Tracy was able to get an MRI, and the scan showed a lesion on her brain. The doctors told the couple it was most likely mild cognitive impairment (MCI). Roy felt like the doctors didn’t know what was wrong with Tracy and were just trying to move on to the next patient. “It was very frustrating,” said Roy. “This was the canned answer. You don’t know what we’re dealing with, so ‘next!’ We saw a neuropsychologist and got the same answer.”

A second diagnosis

A recent survey reported in the Alzheimer’s Association 2025 Alzheimer’s Disease Facts and Figures report stated that 99% of participants think that an early dementia diagnosis is important. Seventy-nine percent of people would want to know if they had Alzheimer’s disease before having symptoms or before symptoms interfere with daily activities.

Additionally, more than 9 in 10 Americans would definitely or probably want a simple medical test – such as a blood biomarker test – if it was available, although very few are familiar with these tests. The number one reason for wanting a simple test is to allow for earlier treatment and care.

It wasn’t for another three years that Tracy was finally able to receive the help and support she needed. After the couple changed their health insurance, they were able to gain access to better testing options. “We had another MRI and the neurologist we ended up with was fantastic,” said Roy. “He got the ball rolling for us.”

Their new neurologist realized there was more going on with Tracy and that she might be in the early stages of Alzheimer’s. He recommended Tracy be screened as a candidate for donanemab (Kisunla™), an anti-amyloid antibody intravenous (IV) infusion therapy. While donanemab is not a cure, it has been shown to slow disease progression in clinical trials.

In order to qualify for donanemab, the recipient must have amyloid in their brain. There are two ways to test for amyloid; a PET scan or a lumbar puncture. Unfortunately, Tracy’s new insurance wouldn’t cover a PET scan, so she had to submit to a spinal tap. Tracy was positive for amyloid and was diagnosed at the age of 61 with younger-onset Alzheimer’s.

“That was pretty devastating,” said Roy. “From there we started [the process of figuring out] how can we get approved for this Kisunla. That’s when we ran into major roadblocks, as we’re trying to absorb the news of this diagnosis.”

Slowing progression

Facts and Figures reports that when participants were asked why they would want Alzheimer’s testing, 83% said it would allow for earlier treatment or care. Seventy-six percent of participants said being tested would allow them to plan for the future and 68% said it would encourage action to preserve existing cognitive function for as long as possible.

The report also shares that 72% of participants, following a diagnosis, would most value information about treatments that slow the progression of the disease. This is especially true for Roy and Tracy, who were already frustrated that they’d lost out on three years of possible treatment.

“Once my wife was diagnosed, we immediately began to assess what we could do to slow progression,” said Roy. “We’d been doing all of the preliminary testing [for Alzheimer’s] and all of that was approved by insurance. Once we got the diagnosis and were wanting to proceed with treatment, that’s when it felt like everything hit the skids and every door was being shut.”

Denied by insurance

While there are many concerns about testing reported in Facts and Figures, including weather the test is accurate (41%) and the cost of testing (39%), the biggest concern is whether, with a diagnosis, insurance will cover future care (44%).

The cost of donanemab is currently set at $32,000 a year. While the Centers for Medicare & Medicaid Services (CMS) will usually cover these treatments, Tracy’s private insurance told her that she didn’t qualify and they would not pay for her treatment. Roy even contacted the company that makes donanemab, which offers financial support for the uninsured, but because Tracy had private insurance, they also denied her.

Luckily, Tracy’s doctor appealed her insurance company, and she was finally approved to receive treatments in December 2024.

Side effects

Participants in the survey used in Facts and Figures expressed strong interest in options to manage and treat Alzheimer’s disease. Ninety-four percent would want medications that lessen symptoms. Additionally, more than 9 in 10 Americans (92%) would probably or definitely want to take a medication that could slow the progression of Alzheimer’s disease following an Alzheimer’s diagnosis.

The report also states that nearly 3 in 5 Americans (58%) said they would accept a moderate or high level of risk with taking an anti-amyloid medication to slow the progression of Alzheimer’s disease, and nearly 1 in 4 Americans (22%) are willing to accept high risk.

No drug is without side effects, and one of the serious, but uncommon, side effects of donanemab is bleeding in the brain. Unfortunately for Tracy, after her second round of treatment, an MRI revealed the brain bleed.

“After a month’s worth of fighting and battling, my wife was approved,” said Roy. “After the first infusion, you have to do an MRI to show there isn’t any swelling or bleeding in the brain. She was fine after the first one. After the second one, the MRI showed she had the swelling and bleeding and had to stop the treatment.”

Still hopeful

While this signaled the end of infusions for Tracy, it did not mean the couple has given up hope. In addition to clinical trials, they are also looking at a possible new treatment from Stanford Medicine that uses deep brain stimulation, primarily in people with Parkinsons. If this is a viable treatment for Tracy, it means making the four-hour drive weekly to the California Bay Area.

“For my wife, it’s all about her wellbeing,” said Roy. “It’s about her wanting to still live and have a meaningful life. If there is a treatment that will help slow the progression and allow her to have quality of life and still do the things that are important to her, we’re willing to do whatever is reasonable.”

Don’t give up

In the process of trying to get treatment for Tracy, Roy was constantly advocating for his wife’s care. He was calling doctors, the insurance company and the drug manufacturer. “I spent hours and hours on the phone and the website,” said Roy. “The amount of time I was spending, most people would have just given up. For people who don’t have the cognitive capacity [to do this], what are they doing? Who is advocating for them?”

Roy encourages other caregivers not to give up. “It’s tempting, but don’t give up,” said Roy. “Lean on any resources you have. Don’t hesitate to beat down every door necessary to try and find answers or someone to help advocate for you. [This disease makes you] feel isolated and alone and that’s the worst place to be. The isolation really creates the hopelessness to get people to give up. The more connected you are and more people rallying around you and advocating for you makes all the difference in the world.

“Tracy is a half-glass-full kind of person. She’s optimistic and hopeful and joyful and that has sadly been diminishing with everything she’s been through, especially with the treatment not working. This treatment would slow progression and give her more time and hopefully give her more of herself and who she’s always been. That’s one of the worst parts of the disease; you watch the person you love slip away. I’d love to push back the clock and give her and us more time, that would be a gift.”

For more information on this year’s Facts and Figures report visit alz.org/facts.

Learn about the latest Alzheimer’s treatments at alz.org/treatments. To see if you qualify to participate in a clinical trial visit alz.org/trialmatch