Richard Bozanich and Jay Smith met at an Alzheimer’s support group. A week later, they began hatching plans for a conference on the disease.
Rather than the usual forum for caregivers, it would be for people who were actually experiencing memory loss and other symptoms of early-stage Alzheimer’s disease. The New York Alzheimer’s Assn. pioneered such gatherings, but the two men wanted to take this new model a step further.
The California conference, they decided over lunch at a Koreatown diner, would even be organized by people with the disease.
In fact, they would do it themselves.
Bozanich and Smith are the new face of Alzheimer’s. When the national Alzheimer’s Assn. was formed in 1980, the people lobbying for research funds and demanding help were the husbands and wives, daughters and sons of patients.
Most patients were already in the middle to late stages of the disease, unable to speak or care for themselves, before doctors gave their symptoms a name.
There was little pressure to diagnose Alzheimer’s earlier, given the bleak outcome and how little medicine had to offer.
As the disease progresses, symptoms include confusion, changes in personality, trouble with expressing thoughts, misplacing things and getting lost in familiar places.
“Support groups, help lines, respite care -- it was all geared to caregivers,” said Peter Braun, president of the Southern California chapter of the Alzheimer’s Assn. “People with the disease weren’t seen. They were at home or in a care facility.”
But early diagnosis gained a new urgency as the federal Food and Drug Administration approved four new drugs over the last decade that can, for some, delay cognitive decline for a few months or years. Now more people are learning that they have the disease while they can still speak for themselves. And some, like Bozanich and Smith, are determined to make their voices heard.
“My mom’s uncle Irwin got this, and we never saw him again,” said Bozanich. “I didn’t want the same thing to happen to me, to be sequestered away like people are ashamed of me. I didn’t want to go quietly.”
This new visibility marks a “transformative moment” for the Alzheimer’s movement, said Braun, who jumped on board for the conference when Bozanich and Smith proposed it a year ago.
Already, the Alzheimer’s Assn. is developing “memory clubs” and other groups to help people in the early stages cope.
At the Oct. 27 forum at Los Angeles’ Skirball Cultural Center, Bozanich and Smith plan to ask others with Alzheimer’s what services they need.
“Maybe because we’re baby boomers,” Bozanich said, “we’re not going to take this lying down.”
Bozanich, 50, was diagnosed in June 2006. As many as 10% of the estimated 5 million people with Alzheimer’s in the United States are between 45 and 65. Early onset often runs in families.
A former writer and editor, Bozanich worked at the Los Angeles Times in the early 1980s before going on to the Dallas Morning News, the Hollywood Reporter and Variety. Chronic fatigue syndrome, a weariness that came on so suddenly that he thought he’d had a stroke, put an end to that career in 1991.
In 2004, Bozanich, who is single, moved in with his 85-year-old mother in Rancho Palos Verdes to help with driving and chores. Soon, he needed help himself. He legs started giving out and he took to using a cane. His balance was off. He walked into walls. He had auditory hallucinations -- harpsichord music that drowned out Linda Ronstadt on his car radio, a TV that blared even when the set was turned off.
An MRI scan ruled out a brain tumor. It took two more years of puzzling symptoms before a doctor sent him for a PET scan, a type of brain scan that, along with cognitive tests, is used to diagnose Alzheimer’s. The scan showed some brain atrophy, but it was his poor performance on a reading comprehension test that drove home to the former journalist that his mind “was not the mind I was used to being able to call on for 48 years.” A doctor said it was probably Alzheimer’s.
Bozanich said he thought about killing himself. For two months, he walked around in a daze. Then he called the local Alzheimer’s Assn. chapter, and a two-hour conversation “saved my life,” he said. The counselor referred him to a support group.
Bozanich grasped on to this bit of advice: Find a partner to compensate for any deficits.
He found Smith.
A former architect, Smith was diagnosed in 2005, a year after he began seeking an explanation for dizziness, fatigue and what he called “brain fog.” He was 67.
In hindsight, he traced some symptoms back eight years. That’s when he’d begun stumbling off the edge of sidewalks and bumping into partitions. Gradually, his symptoms grew worse. He went on disability. Like Bozanich, he thought he had a brain tumor. A doctor diagnosed mild sleep apnea and prescribed a machine to help him breathe at night. It didn’t help.
Smith and his wife, Marilyn, tried a health retreat. They adopted a vegetarian diet and took up meditation. He felt less tired, but his other symptoms continued.
Eventually an intense battery of neuropsychiatric tests showed narrowly focused but profound memory loss. Doctors told Smith that he was probably in the early stages of Alzheimer’s disease. (A definitive diagnosis requires an autopsy to identify characteristic plaques and tangles in the brain, though that could change when new brain scan technology developed at UCLA becomes commercially available.)
The diagnosis was both a shock and a relief. Finally, Smith knew what was wrong. And, engineer that he was, he set out to fix it.
Already a convert to exercise and nutrition, he began to focus on spiritual renewal. He spent more time with his wife, Marilyn, and their grown children, took mandolin lessons, joined a chorus. He began looking for a way to be of service. He wanted to tell people in his condition, “There’s still a lot of good living to do.”
Since they met, Smith and Bozanich have brought this message to audiences both locally and nationally. They are part of a 14-member early-stage advisory board to the national Alzheimer’s Assn. They’ve spoken at conferences in other states. They’ve lobbied Congress.
“We do weddings,” quipped Bozanich. “We do barbecues.”
The local Alzheimer’s Assn., USC and UCLA are sponsoring the conference, which costs $25 for people with memory loss and family or friends and $75 for professionals. A committee of advocates is helping the two men plan the conference.
Even in its early stages, Alzheimer’s complicates day-to-day living. Early symptoms can include a decline in the ability to plan or organize, poor performance at work, problems finding the right word or name and an inability to remember names of new acquaintances.
Smith says Bozanich remains good at remembering names. Bozanich says Smith is still adept at planning.
The two men use each other as “notebooks,” counting on one to do what the other can’t. They confer at support groups and phone each other in the middle of the night.
“To be honest,” said Bozanich of the Alzheimer Assn. colleagues who are helping plan the forum, “to turn this over to two guys with dementia is really amazing.”
For many of the advocates and experts, the organizing sessions marked the first time they’d listened to people with Alzheimer’s instead of speaking for them. Elyse Salend, a specialist on aging who works for the grant-giving Archstone Foundation, left one meeting thinking, “That could be me.”
It was, she confessed, a scary thought.
At the same time, she said, “I felt awed by them, by their courage. They’re not hiding out. They’re trying to make the world better for all of us.”
Both Smith and Bozanich are on medication to stave off the disease’s progression. Smith says he’s holding steady. But lately Bozanich has had words in his head that he can’t seem to get out of his mouth. It frightens him -- and spurs him on.
“As long as I’m able to talk about it,” he said, “it’s important to speak out about what it’s like to live with this.”
To register for the “Living Our Lives, Planning Our Futures” early memory loss forum Oct. 27 at the Skirball Cultural Center, call (323) 900-3180 or go to www.alzla.org/earlystageforum.