By Peggy O'Farrell
The Cincinnati Enquirer
Advocates for families affected by Alzheimer's hope that President Reagan's decade-long struggle with the disease will spotlight the need for more research funding.
Reagan's 1994 announcement put a powerful face on the heartbreaking toll that Alzheimer's takes on patients and the people who care for them, said Diana Trenkamp, executive director of the Alzheimer's Association of Greater Cincinnati.
About 40,000 men and women in Greater Cincinnati have Alzheimer's disease.
WHERE TO GET HELP
To learn more about Alzheimer's disease, treatments and care options, check out these resources:
The Alzheimer's Association, www.alz.org. In Greater Cincinnati, call 721-4284.
The Alois Alzheimer Center, Greenhills. Visit www.alois.com or call 605-1000.
The Alzheimer's Disease Education and Referral Center, a service of the National Institute on Aging. Visit www.alzheimers.org or call(800) 438-4380.
The National Institute of Neurological Disorders and Stroke, www.ninds.nih.gov.
More funding will help researchers identify the missing pieces of the puzzle as they try to find ways to prevent and treat the disease.
An estimated 4.5 million Americans have Alzheimer's, a chronic, progressive, degenerative brain disease. By 2050, as the baby-boom generation ages, the number of Alzheimer's patients will more than triple, according to the Alzheimer's Association.
In the United States, Alzheimer's costs more than $100 billion a year. Medicare spent $31.9 billion on Alzheimer's disease care in 2000.
Federal funding is increasing for Alzheimer's disease, which is a hopeful sign, Trenkamp says."There's a clear understanding at the national level and the National Institutes of Health that this is a problem we cannot afford to ignore.''
Tough on families
Alzheimer's is a painful journey for patients and their families. But medications such as Aricept and Namenda can slow the disease's progress and even restore some cognitive ability.
Staying physically and mentally active can also stave off some of Alzheimer's devastating effects.
Jim Leer, 58, of Forest Park gave up his car keys in August. He made the decision voluntarily when he realized he couldn't always remember what street he was on and that his reaction time had slowed considerably, his wife, Donna, said.
The couple worried that he might injure himself or someone else in an accident if he kept driving. So now, he pulls the car in and out of the garage for his wife, "but there's no on-the-road driving," Donna Leer said.
Jim Leer was diagnosed with early-onset Alzheimer's in 2001. The disease forced him to take early retirement when he couldn't keep track of equipment and scheduling in his job as master control technician at a local television station.
He takes Reminyl and Namenda, and he and his wife travel as often as their schedule allows. Once a week, he takes a painting class offered by the Alzheimer's Association. The act of choosing a subject and picking colors helps preserve mental and physical function.
A Navy veteran who served in Vietnam, Leer understands what he's lost and what's coming. But he tries to focus on the positive.
"It's a heck of a way to go," he said. "The best thing is to have a good attitude. It can help you fight it off longer."
In the last few months, Namenda, the newest drug in the arsenal against Alzheimer's, has helped LaVerne Toebben recognize her children, grandchildren and old friends again.
"She's starting to laugh and joke around again," her husband, Matth Toebben, says. "She says things that are funny. It's helped her a great deal."
The Toebbens, both 73, live in Villa Hills. Their 49-year marriage has given them five children and 15 grandchildren.
Matth Toebbens realized that something was wrong with his wife when she kept repeating the same question over and over.
LaVerne Toebben no longer realizes she's ill, her husband says. "She's past that now."
Sending out the ships
Federal funding for Alzheimer's research totals about $700 million, Trenkamp says. Numerous studies are under way to look at how the disease starts, how it progresses and how to stop it. She compares research to "thousands of little ships leaving port" to look for answers.
"All we know is that we have to send out more and more ships to see what we need to understand about this illness. There may still be a lot of answers that we need to find."
Cincinnati researchers are manning some of those ships.
Dr. Keith Crutcher, a neuroscientist at the University of Cincinnati, is studying the role of a protein called apoliprotein E, or ApoE, in the development of Alzheimer's. A genetic factor causes some patients to form a particularly toxic form of the protein that increases their risk of Alzheimer's by five to 10 times. "The work we're doing has led us to believe that the problem might lie in the protein breaking down. If you can prevent the protein's breakdown, you might be able to slow the progress of the disease," Crutcher says.
Dr. Frank Zemlan, a professor of psychiatry at UC, is focusing on the role of inflammation in the development of Alzheimer's disease. He's looking at whether a very powerful anti-inflammatory drug can be used to prevent or reverse the disease.
Other research is focusing on how anticholesterol drugs called statins might help prevent Alzheimer's disease.
Some families, such as the Reagans and the Toebbens, have the resources to care for their loved ones with Alzheimer's at home. Most don't. And there's little available in the way of state or federal assistance to help pay for long-term care, says Val Halamandaris, president of the National Association for Home Care and Hospice in Washington, D.C.
The demands of caring for an Alzheimer's patient are "devastating" financially and emotionally, Halamandaris says, and few families are prepared for them.
He calls on baby boomers to take up the cause of increasing resources for long-term care of the disabled. He'd like to see the generation demand more funding, both from the government and private donations, and dedicate their own time and resources to the cause.
Medical advances are a mixed blessing, Halamandaris says.
"The good news is people are living longer and longer. The bad news is that things that won't kill us in the future are going to leave us disabled and in need of long-term care and assistance," he says.
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