June 25--Claire Schooley tried for several years to get doctors to diagnose what
was going on with her husband, David, now 57.
He would ask her the same questions again and again, never remembering the
answers. He would grow confused. Two years ago, on a trip to San Jose with their
kids, now ages 6 and 12, he drove 60 miles in the wrong direction from their
hotel, insisting the whole time he knew where he was going.
Maybe his memory loss was the result of depression over two job losses, most
recently in 2009, doctors told the Sacramento couple. Maybe it was stress.
He was growing silent and distant, increasingly lost in his own world.
"I'd see him sitting in front of the TV at home," said Claire Schooley, 45, a
network engineer. "He'd say he was taking a break, but he'd forgotten what he
was doing or what room he was in.
"He never was like this before. We were having a tough time. I knew in my heart
there was something wrong."
Two days before Thanksgiving 2012 -- and almost two years after he sought help
from his primary care physician -- David Schooley finally was diagnosed with
Alzheimer's disease. For people with the degenerative brain disease, delays in
diagnosis can exact a steep cost.
Without timely diagnosis, people with Alzheimer's lose valuable months when
medications can most effectively slow their memory loss. The delay in diagnosis
robs families of the chance to enjoy their time together and make financial and
legal plans for the future.
Alzheimer's is now the nation's sixth-leading cause of death, with 5.4 million
people affected. Even so, physicians can be slow to identify the disease in the
elderly, despite the fact that old age is the greatest risk factor. And doctors
can be even more reluctant to diagnose people below the age of 65 who suffer
from the rare, early-onset form of the illness.
"Honestly, it's a routine thing that families in general try to get the person
seen by a knowledgeable physician for more than a year, even a couple of years,"
said neurologist Dr. Charles DeCarli, director of the UC Davis Alzheimer's
The U.S. Centers for Disease Control and Prevention estimates that only 4
percent of Americans with the disease are younger than 65. But with the aging of
the baby boom generation -- and the coming Alzheimer's epidemic, projected at 14
million cases by 2050 -- the hard numbers behind that younger-onset percentage
continue to rise.
Typically, experts say, families end up frustrated in seeking help, because
primary care physicians aren't looking for dementia in people still in the prime
"Many providers find it hard to believe that someone so young could have
dementia or Alzheimer's," said Elizabeth Edgerly, the Alzheimer's Association of
Northern California's chief program officer.
"It's really difficult. People in their 50s are misdiagnosed with bipolar
disorder or depression or even midlife crisis. Or they're told, 'Of course, you
have memory problems. Who doesn't?' "
'We're better off knowing'
When Bev O'Neil noticed that her friend and employer, Karen Cozakas, was asking
the same questions over and over, she thought the memory loss might be related
"We didn't know," said O'Neil.
Cozakas, now 60, a former technology executive who lives outside Placerville,
was a competent, upbeat and organized woman. Then the bank began calling to
report bounced checks: Karen, it turned out, could no longer balance her
"It seemed everything was going fine, and all of a sudden, everything seemed to
shift," said Cozakas. "It came on me so fast. Well, to me, it seemed fast. It
seemed funny. I forgot little things here and there, but the little things got
bigger and bigger.
"And all of a sudden, we were in a bigger place."
Doctors diagnosed her, at age 56, with mild cognitive impairment -- memory loss
that in an estimated one-quarter of patients leads to Alzheimer's -- but
prescribed none of the drugs that can delay the progression of forgetfulness.
A few months later, she was diagnosed with Alzheimer's. Now she's on two
medications and participates in a clinical trial through the UC Davis
Alzheimer's Disease Center. And O'Neil, her longtime friend, is her caregiver.
"We're better off knowing than not," said her husband, Michael Cozakas, 61. "You
need to know and react accordingly. I think denial is worse than the disease. If
you deny, you expect things to change. They don't. They get worse.
"If you don't have a fixed baseline of understanding, you're constantly upset
For many patients, diagnosis is delayed because a comprehensive assessment of
dementia requires a detailed clinical history and neurological exam, said
DeCarli. The process takes an hour, and most primary care physicians, who can
see up to 40 patients a day in their practices, don't have the time.
"It's a challenge for primary care physicians," he said. "I tend to see them
adapting a number of strategies. When someone has memory complaints, they get a
brain scan and get the patient on memory-enhancing drugs.
"The other strategy is to minimize the complaint until the situation gets more
Complicating the picture is the fact that dementia has other causes beyond
Alzheimer's: Pain medications, vitamin B12 deficiency, thyroid conditions,
chemotherapy and some infections also can cause memory loss. So can diabetes and
The average person with dementia comes into contact with the health care system
four times more frequently than patients without dementia, said DeCarli.
Beyond the health consequences and frustration, families of people with early
onset Alzheimer's also deal with the fact that delayed diagnosis forestalls the
process of applying for Social Security disability payments.
And, said the Alzheimer's Association's Edgerly: "The travesty of not getting
diagnosed is that people are alone. They're alone, and they have no idea what's
going on. It's very sad."
After long delays finally gave way to a referral to a neurologist, Claire
Schooley hoped for a diagnosis for her husband. By that time, she suspected he
might have Alzheimer's.
But she wanted to know. For him, for their children, for their future, she
wanted to be able to plan.
"The neurologist went over the test results and said, 'You can come back in a
year,' " said Schooley. "I was really scared it was Alzheimer's, but after the
referral, I thought they'd help us.
"I started crying. I was really upset. I said, 'I'm telling you, there's
something wrong with him.' "
She insisted on a follow-up test, a positron emission tomography (PET) scan,
which showed decreased brain cell activity.
Her husband of 13 years -- the former telecom technician who once could fix
anything, the man who made the dean's list when he retrained in HVAC school a
half-dozen years ago -- definitely had Alzheimer's. The news came as both a
shock and a relief.
"David doesn't talk much anymore," said Schooley. "He's forgotten about things
he can't do. I'm worried about my kids. My son asks, 'Is he going to forget who
I am?' Chances are, he will.
"But we're trying to make memories for our kids, so later that's the part
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