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For Alzheimer's Patients, a Daily Struggle With No Relief in Sight

By Amanda Gardner
HealthDay Reporter

THURSDAY, July 22 (HealthDayNews) -- This week's headlines on potential breakthroughs in Alzheimer's research seem to offer hope.

But for those in the grip of the devastating disease and for their loved ones, reality can't be found on the front page. Often, it's a numbing, heartbreaking grind as they struggle from one day to the next.

"Every research company, every pharmaceutical company is working on something. But you can't get all hyped on it because it's going to take a long time," said Linda Barba of Cherry Hill, N.J., whose father has the disease.

"I don't see a cure in his lifetime. But in mine," she added, "I hope that there is."

As the just-concluded International Conference on Alzheimer's Disease and Related Disorders in Philadelphia demonstrated, scientists' understanding of Alzheimer's grows and researchers continue to make incremental advances against the mind-wasting disease.

Consider these findings:

  • The drug Aricept may delay the onset of Alzheimer's symptoms in some people.
  • New research suggests that keeping weight off, eating leafy vegetables, and maintaining healthy blood pressure and cholesterol levels may stave off the disease's relentless course.

Still, there were no reports of breakthroughs in the search for a cure or even a truly effective treatment for people like Barba's father, Dino.

At 72, he is no longer able to perform such basic daily tasks as eating, bathing and dressing without assistance.

So his wife, Patricia, 76, must get him up in the morning, crush his pills and make sure he swallows them. She also feeds him breakfast, lunch and dinner, bathes him, dresses him and deals with his urinary incontinence. A home-health aide comes in three hours a day, five days a week. But it's mostly Patricia, and sometimes her daughter, who handle all of Dino's needs.

Dino participated in a clinical trial for the drug Reminyl, even before his official diagnosis. Reminyl is a cholinesterase inhibitor, which prevents the breakdown of a chemical messenger in the brain so as to preserve cognitive functioning.

"It was effective to know that we were doing something to help the greater good even though it didn't help him individually," said Barba. "I don't think there was anything else we could have been doing or should have been doing."

Roz Ruby of Chestnut Hill, Pa., also monitors the latest developments in Alzheimer's research. That's because she's the primary caregiver for her life partner, Donald Gene Kurtz, who turns 61 next month and was diagnosed with Alzheimer's about five years ago.

One of Ruby's main strategies is to keep Kurtz busy. So he volunteers at a nearby rehabilitation hospital.

"He socializes with the patients, he helps them pass the time, does a lot of encouragement, a lot of positive attitude and dialogue," Ruby said.

Kurtz's communications skills are largely intact, although, Ruby added, "there are times when his vocabulary is lacking, he is grasping for a word and it doesn't come."

Kurtz has also applied to join a mentoring program at a junior high school. "I try to keep him busy," Ruby said. "I think one of the key elements is to stay active."

Ruby also takes Kurtz with her when she goes out on business calls for her jewelry designer clients. And while the idea of keeping Kurtz busy grew out of Ruby's "gut feeling," new evidence shows that activities with physical, mental and social components may actually help hold off dementia.

"Lifestyle is important. Attitude is extremely important," Ruby said.

An early diagnosis seems to have helped Kurtz, and different medications may also be having a modest effect. Ruby believes various factors have prolonged each stage of the disease, so Kurtz is failing more slowly than many people.

"You can't pinpoint one single factor, the extra doses of fish oil, the staying active or the attitude or the [Alzheimer's drug] Aricept. My guess is it's a combination," Ruby said. "It's also key to have a good caregiver or partner who is proactive and stays abreast of opportunities."

Kurtz has also been involved in clinical trials for Alzheimer's medications; he's scheduled to start another one next week, for a drug called Xaliproden.

"We are directly affected by ongoing research because we have been asked to participate in different studies," Ruby said. "Hopefully, through Don's efforts, they will impact on somebody down the road."


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