Dick Halleman fills his mountainside home with the full, sweet sounds of saxophone, his fingers moving easily over the keys as his wife, Libby, accompanies him on the baby grand.
For more than two decades, the Paradise Valley couple headlined at Marriott’s Mountain Shadows Resort, taking their act on the road to Las Vegas, Lake Tahoe and cooler climes during the summer.
“It was just this past year that he stopped remembering the words,” Libby Halleman says, recalling their most recent gigs at the Phoenix Country Club.
So they’ve mostly retired from the music business, except for private parties now and then, and settled into the business of adjusting to life with Alzheimer’s disease.
In the next few weeks, Dick Halleman will become part of a clinical trial at Banner Alzheimer’s Institute, studying the effectiveness of a Chinese herb called Huperzine A in treating the brain-withering illness.
He’s also part of a new database registry, set up by the seven-member Arizona Alzheimer’s Consortium, to match participants with local studies aimed at finding early diagnosis, treatment and eventually a cure.
Researchers say they’ll need thousands of participants for dozens of current and future studies — including a prevention trial expected to start in the next year — and they don’t want to waste time looking for people once federal health officials approve the studies. Those who don’t qualify for current clinical research remain on the registry and can be tapped for future studies.
The new database points to the growing body of biomedical research here in the Valley targeting Alzheimer’s and related dementias, as well as the sense of urgency to prevent or mitigate a disease that now afflicts more than 5 million people in this country, including nearly 80,000 in Arizona.
“There’s a tidal wave coming and we have to do something about it,” says Dr. Pierre Tariot, a geriatric psychiatrist and associate director of the institute, which opened last fall in Phoenix.
“The tidal wave is the increasing burden that our society is going to face with more and more people afflicted with Alzheimer’s disease. So we really need to put this thing behind us.”
To that end, nearly 30 studies are under way in Arizona, with at least 50 more in the offing, Tariot says, including 15 vaccine trials.
Another two or three are expected to open for enrollment in the next few days, an indication of how rapidly things are moving.
Early studies in mice have shown that vaccines may be able to block buildup of amyloid plaques in the brain, which scientists believe kill brain cells and lead to memory loss and other cognitive declines that characterize Alzheimer’s.
Researchers want to figure out how to keep the plaques from forming and hope to find a way to remove them and reverse the damage already done.
Other research targets early diagnosis and treatment, using everything from brain imaging and memory tests to fish oils, proteins and amino acids. The work is funded with public and private grants, including the National Institutes of Health and pharmaceutical giants Merck and Takeda.
“These treatments are just going to start coming one after another,” Tariot says. “I think we need to anticipate things better, so as soon as they become available we can save months, or even years.”
Dick Halleman had trouble with Aricept, a commonly prescribed drug for patients in the early stages of dementia that works to inhibit the breakdown of a neurotransmitter critical to memory.
After several months on the drug, a late-night panic attack last fall caused Libby Halleman to call 911, and her husband spent a terrifying night in the hospital.
“His reaction in the hospital was really bad. He was just uncontrollable,” his wife recalls. “Ever since then, everything has been back to normal. Whatever normal is.”
Dick Halleman, 81, says he just wanted out: “I was mad.” And he doesn’t care much for this topic.
“I feel like I’m a very normal person,” he says, smiling. “I’m not doing anything wild here, am I?”
The Chinese herb derivative Halleman will take is supposed to work like Aricept.
But like most other studies, this one is double-blind and participants won’t know if they’re taking a placebo for several months.
Scottsdale native Cathryne Beardsley starts taking a pill Friday that she hopes contains megadoses of omega 3 fatty acids, in a bid that the fish oil will sharpen her memory.
Beardsley, 84, started having memory problems after a hospitalization to insert a pacemaker two years ago, says her daughter, Dorian Kuper. She started dressing a little more carelessly, unheard of for this former model, and repeating herself in frequent phone calls with her daughter, a Portland geologist.
“I’m not holding out hope for a miracle,” Kuper says. “But it would be nice to see if she could get a little more spunk.”
Kuper says her mother wants, more than anything, to advance Alzheimer’s research so future generations can be spared from this degenerative disease that takes such a toll on families.
“The whole thing is about the research,” Kuper says. “It’s about the future.”
Without interventions, nearly 100,000 Arizonans will have Alzheimer’s or a related dementia by 2010, a 24 percent increase from 2000, according to a new report by the Alzheimer’s Association.
“I’m highly motivated, partly for selfish reasons,” Tariot says. “I don’t want to be afflicted with this illness, and even more I don’t want my children to be.”
In addition to the Alzheimer’s institute, the consortium includes the Mayo Clinic in Scottsdale, Sun Health Research Institute, the Translational Genomics Research Institute, Barrow Neurological Institute, the University of Arizona and the Veteran’s Administration Hospital in Tucson.
Kuper and Libby Halleman say they’re grateful for the research, not to mention the straight but compassionate talk they’re getting from Tariot and others at the Alzheimer’s institute. It helps to know what to expect.
Libby Halleman, 79, has taken over all the household duties, from paying the bills to getting the water heater repaired.
She’s planning for the day when they won’t be able to live together in this home on Mummy Mountain, where her husband happily makes music, feeds the birds and dotes on their dog and cat.
“I like it here so much,” Dick Halleman says, gazing out at the Valley from his back deck as Poppy, the standard poodle, sniffs at dog biscuits in his pocket. “I‘m so happy here.”
When he plays his saxophone or clarinet, he doesn’t miss a beat. But when he tries to string a sentence together, it takes some effort.
Libby Halleman feels fortunate that, at least for now, the disease seems to be progressing slowly. She wants him to be part of any studies that might help, “as long as it’s safe.
“A year from now, who knows what his condition will be?” she says. “We’ll just have to see what happens. And cope with it some way or the other.”
A new report by the Alzheimer’s Association shows that the disease is becoming more prevalent and more costly.
• More than 5 million people, including about 80,000 in Arizona, have Alzheimer’s or a related dementia. By 2010, nearly 100,000 Arizonans will be afflicted.
• Nearly half of people 85 years or older have some type of dementia.
• More than half of Arizona’s 40,000 nursing home residents have a cognitive impairment; one-third are considered moderately or severely impaired.
• Alzheimer’s disease is the seventh leading cause of death in the U.S., and the fifth leading cause among people over 65.
• Seventy percent of people with dementia are cared for by friends and family in their home.
• In Arizona alone, caregivers for people with dementia put in more than 131 million hours of unpaid work in 2005, valued at nearly $1.3 billion.
• About one out of three of those caregivers is 60 years or older.
• The Alzheimer’s Research Registry is designed to match people with study opportunities. The registry is open to English-speaking adults, with or without memory problems, who are at least 50 years old.
• For more information or to register: (602) 239-6500; www. registry.azalz.org
• To contact the Banner Alzheimer’s Institute: (602) 239-6900; www. bannerhealth.com/_alzheimers