Early diagnosis lets patients look Alzheimer's square in the face

Sunday, July 06, 2008 BY ANGELA STEWART Star-Ledger Staff

Florence Oppenheimer mentioned to her doctor during a routine checkup that she was having difficulty remembering things. "I was very annoyed," said the 72-year-old Lakewood resident. "I would pick up something and read it and have no memory of what I read."

Her doctor didn't hold back. He said it sounded like she might be in the early stages of Alzheimer's disease. Once Oppenheimer got over the initial shock, she decided there was little time to waste feeling sorry for herself. She immediately contacted a neurologist, who began tests. And she reached out to Alzheimer's organizations, gathering information and resources.

"I thought they could help and they did," she said. "They sent me a whole bunch of literature and recommended things I should do, like getting a power of attorney."

Two years later, Oppenheimer continues to live a fulfilling life even though she suffers from a degenerative brain disease. This type of self-advocacy by Alzheimer's patients was virtually unheard of 20 years ago, when caregivers were the ones to reach out for information and support. But as more people are diagnosed earlier, they are increasingly taking control of their own futures and, by doing so, forcing traditional Alzheimer's organizations to rethink their missions. "Our services were mostly focused on people in the latter stages of the disease and it was their caregivers we were hearing from," said Laura Holly-Dierbach, vice president of programs and services for the Alzheimer's Association Greater New Jersey chapter. "We are now developing an early-stage advisory committee to help us better understand these clients and families and provide links to the most appropriate services for them."

An estimated 5.1 million people in the United States suffer from all forms of Alzheimer's, with as many as half in the early stages of the disease, according to the Alzheimer's Association. Although there is no cure for Alzheimer's, doctors say patients diagnosed early tend to do better. Like Oppenheimer, many are immediately placed on medications -- such as Aricept or Namenda -- that studies have shown can help slow the inevitable cognitive decline.

But many physicians are still uncomfortable making the diagnosis because it is not as "clear-cut" as telling someone they have cancer, said Theresa Redling, head of geriatrics at Newark Beth Israel Medical Center. But she said patients who hear it early can make important decisions they will be unable to comprehend later, such as what medical care they desire at the end of life. "What they are telling us is that they want to be part of the decision-making process," said Lisa Gwyther, director of education for the Joseph and Kathleen Bryan Alzheimer's Disease Research Center at Duke University Medical Center and author of a book, "The Alzheimer's Action Plan."

Maintaining a social life is very important, Gwyther said, especially couples who want to keep their identity as a twosome. That's why you have "memory cafes" popping up in some areas of the country, she said, describing them as places where people with early disease can come and share a cup of coffee and casual conversation. "People want to be able to do things still important to them in similar ways," she added. "Not everyone likes support groups, but they enjoy getting together informally."


Oppeheimer, a Lakewood resident and retired nurse, is a member of a support group. A widow with four grown children, she sold her mobile home 18 months ago and moved into an independent-living complex, which hosts the meetings. She doesn't have to cook because meals are provided and there is medical care on site if she needs it. "I still drive, too, and don't get lost," she said. "But I told a friend if you ever see me do something really strange, like taking the garbage out to the gutter, you have to call my daughter. I was only half-kidding." Oppenheimer also belongs to the garden club at her complex, which helps her stay busy. She makes "to do" lists to help remember things, but her greatest frustration is not being able to find the right word when she needs it. "I'm more halting with my speech," she said. "Some words I want to use won't ever come back."

Some experts believe early-stage Alzheimer's patients are similar to breast cancer patients of 20 years ago, before women started getting diagnosed early and became vocal advocates. But signs are emerging these Alzheimer's patients are starting to gain momentum, too.

Last fall, organizers of a forum in Los Angeles for early-stage patients had to turn people away because the response was so overwhelming. Richard Bozanich, 50, a former editor for Variety magazine who helped organize the Early Memory Loss Forum, was himself diagnosed with early-onset Alzheimer's two years ago. "I would go to stand up and my legs would just go out from underneath me," Bozanich said. "If I would go from my kitchen to my bedroom, I would walk into the walls."

Issues with his memory followed and he sought medical help, which led to his diagnosis in June 2006. Bozanich, who also was placed on medication, said he initially went through a "very dark period," but eventually decided to become an activist on behalf of the thousands like himself living with early-stage disease. He has since attended meetings around the country, and is sought after as a speaker by Alzheimer's groups. But when it comes to his own diagnosis, Bozanich has learned to keep things in perspective and even laugh at himself occasionally. He likes to tell the story of the time he came out of a hotel bathroom and saw a pair of men's trousers lying on the bed.

He "freaked out," thinking someone had broken in. Soon, he realized they were his pants. "If you can't remember someone's name or where something is, at some point it's going to be okay," he said. "You reach a point where you stop catastrophizing everything."

Angela Stewart may be reached at