Alzheimer's wave will make Florida its ground zero

Today, an estimated 500,000 Floridians have Alzheimer's disease, but that number is expected to grow 40 percent by 2025, according to a recent report from the Alzheimer's Association, a national nonprofit agency dedicated to research on the disease.

That would give Florida more Alzheimer's patients than all but one other state - California. And it will make Florida ground zero for the coming Alzheimer's wave.

The reasons are simple, say advocates for the elderly.

"We have more old people (than other states) and old people are living longer. The number one risk factor for Alzheimer's is age," said Mary Ellen Grant, director of Share the Care, an Orlando day care facility that provides respite care for Alzheimer's and dementia patients.

At age 65, one in 10 people has Alzheimer's. But by age 85, almost half of Americans have the disease.

Nationally, there are about 5.3 million Americans with Alzheimer's today, and experts predict that number will triple by 2050. The cost of their care to Medicare and Medicaid was about $170 billion last year. By 2050, experts estimate their care will surpass the nation's military budget and cost $800 billion a year.

Beyond the cost to taxpayers, Alzheimer's disease is devastating to families, said David Morgan, CEO and director of the Byrd Alzheimer's Institute at the University of Southern Florida. Businesses lose money to Alzheimer's, too, he said, because employees who try to juggle caregiving with work often miss time and sometimes have to leave the workforce.

The financial cost of Alzheimer's disease to business is estimated at more than $61 billion a year. Of that, $24.6 billion is directly related to health care, while $36.5 billion covers lost productivity for employees who are caregivers, according to data from the Alzheimer's Association.

"It's a complex problem, and one that's really going to hit Florida hard," USF's Morgan said. "But the worst part is what it does to the families. You have to constantly be vigilant that they're not going to get themselves in trouble.

"It's like raising a child," Morgan said. "But it gets worse instead of better."

That's what has happened to Fred Odena of Orlando. At first, he would become disoriented from time to time. Then he began stopping at green lights while he was driving.

His wife of 52 years knew something was very wrong when he went on a business trip and police found him lost and wandering the streets - minus $500 in cash.

Two years ago the former rocket scientist for Lockheed Martin was diagnosed with Alzheimer's.

"It's just sad," Sue Odena said. "It's just a shame that he's being robbed of himself."

Today the 72-year-old former Marine and part-time calculus teacher sometimes needs help putting his pants on correctly.

"He knows where this is going and he feels very badly that we're being put through it," Odena said. "I go out in the garage and cry because I don't want him to feel bad."

Alzheimer's disease is the sixth leading cause of death in the United States. But in a survey released earlier this year, Americans said they fear being diagnosed with Alzheimer's almost as much as they fear a cancer diagnosis.

The reason? Alzheimer's can be a long, taxing journey for both patients and their families.

Although Florida may not be ready for this onslaught of Alzheimer's patients, it could be better positioned than many other states.

"Florida was way ahead of its time 25 years ago, when the legislature passed the Alzheimer's Disease Initiative," said Nancy Squillacioti, executive director of the Alzheimers and Dementia Resource Center in Orlando.

The initiative, which is still in place, established 14 memory-disorder clinics around the state, funded model adult day care programs and provided funding for respite care to help caregivers. The state also established two "brain banks," where doctors examine the brains of deceased Alzheimer's patients in an effort to better understand the disease.

Although the state gets the broader picture, "I don't think they quite understand the impact of the numbers that we're looking at," Squillacioti said. "There's still a lot of financial support for Alzheimer's, but there's not as much as we're going to need."

At Share the Care, for instance, many families are on a waiting list for care - particularly families that need some help paying for services.

"We serve 1,000 people a year and that's just a fraction of the need," Grant said.

What Florida needs, Squillacioti said, are more adult day care centers designed to care for dementia patients - places that engage them and allow their family members to continue working.

For the Odenas, Alzheimer's has chipped away not only at Fred's memory, but also at the couple's retirement fund. They had saved money throughout his career as a rocket scientist. But it's almost gone now.

So his wife, Sue, continues working.

"I need to bring some money in. Our savings are gone," she said. "I'm paying $60 a day for him to go to day care. I work so we can pay our bills."

She had hoped that by this point they could both retire, but that's not an option now. Instead, she works full-time as a commercial realtor.

For taxpayers and families, helping caregivers keep patients at home may be the least expensive route.

The back-breaking cost of Alzheimer's disease is due to the years of nursing home care required for patients who can no longer stay at home.

About 60 percent of the nation's nursing-home residents are Alzheimer's patients, Morgan said, and they tend to live longer than other nursing-home patients.

Typically, Morgan said, Alzheimer's patients will stay in a nursing home from one to five years at an expense of at least $60,000 a year.

And that, he says, devastates almost all middle-class families. "What happens is these people use up all their life savings, they mortgage their home in order to get as good a quality of life as they can for their family member," Morgan said. "They are, as a family, destitute and then they go into Medicaid" - which will pay for nursing home care only after a family has exhausted its finances.

By contrast, in Florida, the cost of respite services - such as adult day care centers and periodic overnight care - costs about $8,500 a year per patient, according to the Florida Department of Elder Affairs.

Because of the taxing demands of caring for Alzheimer's patients, their family caregivers rack up serious medical bills themselves. That added up to $7.9 billion in health care costs in 2010. More than 60 percent of family caregivers report high levels of stress and 33 percent report symptoms of depression.

"If we don't do something to help the caregivers, then we're going to have large numbers of folks who are going to have to be institutionalized," Squillacioti said.

And that, she added, "is going to bankrupt all of us."

© 2011, The Orlando Sentinel (Fla.).
Distributed by McClatchy-Tribune Information Services.