Getting lost. Forgetting names. Changing personality. These are among the most common symptoms of Alzheimer's disease, the most well-known and prevalent form of dementia.

Saturday, Sept. 21 is World Alzheimer’s Day. And an estimated 5.8 million people are living with the disease in the United States alone, according to the Alzheimer's Association's 2019 annual report. That’s a 10% increase from the figure the association published a decade ago.

The vast majority of those affected — 5.6 million people — are age 65 and older. Within six years, that number is projected to reach 7.1 million. Within three decades, it could reach nearly 14 million, the association reported.

In Kansas, an estimated 54,000 residents age 65 and older have Alzheimer's disease, according to the report. In 2025, their numbers are projected to hit 62,000, an increase of 15%.

As Baby Boomers continue to age, the number of Americans who die with Alzheimer’s also has escalated. The 2017 annual death rate per 100,000 Americans who are 85 or older was nearly double what it was in 2000.

People are so scared of Alzheimer’s dementia because it’s a “100% fatal disease,” according to Keith Fargo, director of scientific programs and outreach at the Alzheimer’s Association.

“No one survives Alzheimer’s today,” Fargo said.

That’s why both patients and their loved ones usually have a hard time accepting the disease, Fargo said.

Mysterious disease

Kate Royals of Jackson, Mississippi, said she initially struggled to accept her father’s diagnosis when he was in his early 70s. Tom Royals was the first in his family to get a college degree and built a successful career as an attorney. It seemed impossible that someone so brilliant could succumb to such a fate, she said.

“He’s one of the most intelligent people I’ve ever known,” his daughter said. “He built his whole life off his brain power, but suddenly he has his brain turning against him. It was really hard to watch.”

The family initially denied the early symptoms, brushing them off as typical age-related forgetfulness. Eventually, the signs progressed to the point that they were hard to ignore.

“I remember my mom having a need to get him diagnosed,” Kate Royals said. “But he would not go to get assessed in the early days.”

This is common among people who develop the disease, Fargo said. They don’t want to believe they have it, he said, and they fear the stigma associated with it.

“It’s the fear that people will look at them as less than a complete human being in some way if they have Alzheimer's disease,” Fargo said.

Testing for Alzheimer’s disease usually involves a battery of cognitive tests and questionnaires, as well as brain scans and blood tests to rule out other causes. Unlike other diseases, it cannot be definitively diagnosed until after death when researchers can examine the brain.

Post-mortem exams reveal important changes in the brains of Alzheimer's patients, including reduced mass and clumps — or plaques — of proteins responsible for neuron disruption.

Genetic mutations have been linked to a small group of Alzheimer's patients, while other causes are still a mystery, researchers said.

An estimated 85% of dementia patients are first diagnosed not by a specialist but by a primary care doctor, said Julie Zissimopoulos, director of the Aging and Cognition program at the University of Southern California Leonard D. Schaeffer Center for Health Policy & Economics.

Zissimopoulos, who co-authored a recent report on the subject, said the findings suggest Americans should rethink the role of the primary care physician.

“The critical role of a specialist is to be able to give an accurate diagnosis of what type of dementia it is,” she said. “And non-specialists are the ones who see people on a regular basis for their health conditions. We need to think about whether our non-specialists have the tools that they need to both diagnose and to care for this large and growing group of patients.”

Caregiver burden

Tom Misciagna, a former AT&T project manager from Manassas, Virginia, lost his job and couldn't perform daily tasks like paying bills before he was diagnosed with Alzheimer's in 2012. He was just 57. For a long time, his wife said, she thought it was a midlife crisis and that her husband had lost interest in their marriage and their home.

“It wasn't until after (the diagnosis) that we realized, in fact, he was unable to do those things any longer,” said Peggy Misciagna. “For me, at first, it was a real relief. At least, I knew it wasn't anything to do with our relationship … and it was something that he had no control over. It was a nasty disease that took him over.”

She said she tried her best to keep Tom “very, very, very busy” by doing tons of outdoor activities like visiting cafes, listening to live music and going square dancing. Her only job now is “just taking care of him” at home.

Peggy Misciagna isn’t alone.

More than 16 million family members provide some 18.5 billion hours of unpaid care to people with Alzheimer’s and other types of dementia, according to the Alzheimer’s Association. The group estimated the caregivers’ economic value at $233.9 billion — or 10 times the total revenue of McDonald’s worldwide in 2017.

Others may choose nursing homes or memory-loss centers.

Lance Chapman, assistant executive director of Goddard House, an assisted living facility in Brookline, Massachusetts, said he noticed a recent uptick in the number of memory-loss patients moving into their 75 traditional apartments for seniors.

He attributed this to the long waiting list for their 44 memory-loss apartments, the length of which has doubled since 2017, Chapman said.

Such lists will continue to grow unless the scientific community makes a significant breakthrough in early detection and prevention of the disease, experts said.

Fargo, of Alzheimer's Association, noted that large investments in biomedical research have led to significant decreases in death rates from cancer, heart disease and HIV. He said similar investment should be made towards Alzheimer's research.

“When that occurs,” Fargo said, “we will see results in reducing the number of people who die from Alzheimer's as well.”