Alzheimer's challenges families, scientists

For our three-part series, we will take a closer look at some facets of a complex, incurable condition — Alzheimer's disease. Millions of Americans struggle with it while science struggles to understand it. In our first installment, we look at the toll Alzheimer's takes on the economy and families — and explore the growing threat of a disease that, as the U.S. population ages, could affect 15 million Americans by 2050.

When Tony Schwartzwalder, 70, was learned with Alzheimer’s disease five years ago, life became difficult for him and his wife, Cecile Javier, 58.
 
Schwartzwalder and Javier reside in his hometown of Arlington, Va., in a house they restored themselves. They met in 1984 while working together in the Philippines. Five years later and separately, they came to the United States and eventually got married.
 
“Ten years ago, his life was running at 90 miles per hour,” Javier said. “Multi-tasking. He was doing a lot of big projects in HIV/AIDS prevention. He was traveling all over the world promoting his programs. Asia, Africa, Thailand, putting in place a lot of programs for HIV/AIDS prevention. And now…”

Video: What life is like now for Schwartzwalder and Javier.

 
One thing Schwartzwalder keeps returning to, if you talk to him about his past, was his work with the United States Agency for International Development (USAID) on bilateral programs and projects using money from the U.S. government for development in the Philippines. After retiring from USAID, he taught English as a second language. He delivered food for homebound people with HIV/AIDS. He would walk or run two to four miles every morning.
 
He has a best friend, who lives four blocks away, whom he’d spend time with.
 
Nowadays, when Schwartzwalder goes outside to look for his friend’s house, Javier said she’ll be lucky if a neighbor brings him home.

“It’s all little things, the activities of daily living are gone," Javier said. "You have to help him with those things.”

An irreversible brain killer
 
As defined by the medical community, Alzheimer’s is a progressive brain disease that severs connections between nerve cells in the brain, resulting in the death of those cells. As defined by those who suffer from it and their caretakers, it is easily dismissed memory lapses; followed by not-so-easily dismissed memory lapses; followed by heartbreaking memory lapses; followed, eventually, by the inability to speak, move or eat. In short, it is incurable, irreversible and fatal.

Video: Learn about the stages of Alzheimer's disease from Nancy Dezan, executive director of the Alzheimer's Family Day Center and Dr. Raja Parasuraman, George Mason University professor of psychology.

While other causes of death associated with old age, such as heart disease and stroke, are on the decline, deaths from Alzheimer’s, which is less understood and 100 percent fatal, are on the rise.

Alzheimer's by the numbers

As the population ages, and the baby boomers move into the age range where the majority of cases are diagnosed (above 65 years of age), it is expected that the number of patients could triple over the next four decades. Between 2000 and 2006 alone, according to the Alzheimer’s Association, deaths from Alzheimer’s Disease increased 46 percent. Experts estimate that, by 2050, there could be 15 million Americans living with Alzheimer’s disease.

Alzheimer’s disease is not only emotionally and physically devastating--it can also be financially painful.
 
“Financially the cost of caring for someone for the entire journey that is Alzheimer’s disease is huge and can take a huge toll,” explained Nancy Dezan, executive director of the Alzheimer’s Family Day Center in Fairfax, Va. “Most of the services that are needed for someone with Alzheimer’s disease are not covered by Medicare and are not covered by a regular health insurance, so much of the care is private pay.”
 
Dezan explained that a traditional nursing home can cost $90,000 to $100,000 a year, and even an assisted living facility can cost $60,000 to $70,000 a year.

“We like to think that adult day care is the most cost effective option. A full year, fulltime in adult day care costs less than $20,000,” said Dezan.

Another kind of cost
 
For caregivers, the emotional cost is also tremendous. The Alzheimer’s Association estimates that there are 5.3 million living with the disease, resulting in a cost of $172 billion annually. The crippling cost of care on families has resulted in 10.9 million unpaid caregivers (mostly friends and family).

According to the Alzheimer’s Association’s 2010 Facts and Figures Report, these unpaid caregiver hours (12.5 billion hours in 2009) have other hidden economic effects: the difficulties of caregiving may require treatment for depression and, according to the report, have a “negative impact on the health, employment, income and financial security” of caregivers.

“It will add to our health-care crisis, not just because of the medical cost, but also the social and care-giving costs,” said Dr. Raja Parasuraman, professor of psychology and director of the Human Factors and Applied Cognition program at George Mason University.

Dr. Raja Parasuraman, George Mason University professor, is concerned Alzheimer's could "add to our health-care crisis.": Photo by Kristin McGrathAn expert in the field of cognitive neuroscience, Parasuraman has studied attention and memory in healthy brains and in those with dementia. He has written several books based on his research, including “The Psychology of Vigilance,” “The Attentive Brain” and “Neuroergonomics: The Brain at Work.” He is now writing a book called “‘Nurturing the Older Brain and Mind” with his colleague Pamela Greenwood.

A global and personal struggle

Alzheimer’s could have an increasingly global reach as the life expectancy increases in developing countries, such as India, Parasuraman said.

“In the 1900s, there were very few people over the age of 80,” Parasuraman said. “Now we have centenarians who are in their hundreds and doing fine. And this is actually a worldwide phenomenon, it’s not just in the U.S.”

As Alzheimer's disease increases its hold worldwide, it is also strengthening its grip on Schwartzwalder's and Javier's lives.

"If you’re a caregiver, it’s called a 36-hour day," said Javier. "The need for help does not stop. And where do you find that help?"
 

Read our second installment next week to learn how Javier and Schwartzwalder — along with health care providers and researchers — are facing Alzheimer's head-on.