Carole Olsen noticed her husband Bob was getting a bit forgetful. But his happy, upbeat nature wasn’t changing as he got older.
Time after time, over the passage of several years, she rejected the diagnoses from various doctors that her husband suffered from Alzheimer’s disease, one of the most severe forms of dementia and one of the most feared.
She had done some reading on Alzheimer’s symptoms and didn’t feel her husband was one of those slipping into the fog of the disease, which currently afflicts 5.4 million people in the U.S. alone, according to the Alzheimer’s Association.
Still, one doctor after another – nine all total, of varying board certifications –and even the Mayo Clinic in their home state of New York, came up with the same conclusion.
“I went along ignorantly,” she said. “They said this pill, Aricept, would help his memory. I thought that medication was harming him.”
She was right about the misdiagnosis. Bob had normal pressure hydrocephalus (NPH), also known as water on the brain, an abnormal accumulation of the cerebrospinal fluid in the ventricles of the brain and a condition that is often confused with Alzheimer’s, as so many maladies are. He had surgery to implant a cerebral shunt to relieve intracranial pressure, and came out of it very much the man he had been.
“He woke up and there were his beautiful Norwegian blue eyes!” recalled Olsen. “The eyes had that white-ish look before. I knew he was back and much better. He hadn’t spoken that entire year, and suddenly, spoke right then. He said, ‘Oh Honey, I didn’t know you were there.’”
Once he was treated for that, his whole personality came back and he learned to walk again with a cane. Their new life was sweet but all too short – a wonderful year until his death from a heart attack in his 70s.
More than 100 health conditions can mimic Alzheimer’s disease, experts say. Hydrocephalus is prominent among them. Infections, benign tumors and depression are also reversible conditions that can be confused with Alzheimer’s. Also, some medications—such as drugs for diabetes, heart burn and high cholesterol—can cause symptoms like confusion, memory loss and personality changes that resemble effects of the disease.
Alzheimer’s, the most common cause of dementia among the elderly, is progressive and irreversible, a devastating disease that destroys memory and eventually the ability to perform even simple tasks. When it is at its most advanced stage, sufferers are completely dependent on others for their basic daily needs.
Part of the confusion with other conditions lies in the fact that Alzheimer’s disease can be diagnosed with complete certainty only after death.
Dr. S. James Shafer, board certified neurologist and founder of Vero Neurology, is the doctor who detected Bob’s true problem. According to Olsen, after 15 minutes of examining Bob and taking a detailed medical history, Shafer turned to her and her husband and told them it appeared Bob was suffering from a “classic textbook case of hydrocephalus.” He underwent a special test which confirmed he did in fact have hydrocephalus.
Shafer says as patients get older, certainly cognitive problems are more likely to occur. “With those cognitive changes, people always worry about the ‘A-word,’ Alzheimer’s Disease. People suddenly get worried they’ve got it.”
But Alzheimer’s can be particularly hard to confirm in some cases, in part because the symptoms may develop so gradually early on.
Peggy Cunningham, executive director of Alzheimer’s and Parkinson’s Association of Indian River County, wasn’t aware of widespread cases of misdiagnoses but said in cases with any doubt, it’s important to see a specialist.
“You want to make sure especially if all of a sudden there are symptoms,” she said. “It could be something else.” As she points out, Alzheimer’s symptoms come over a period of time.
Shafer says there is no quick diagnosis when it comes to Alzheimer’s and other neurological diseases. The average diagnosis for many such conditions is 1 to 3 years, he said. “It’s not like someone with the disease suddenly walks in the door, and they have Alzheimer’s disease. They can walk in when they are showing early signs, and it’s tough to pick out, it can be missed. And then it can be very obvious. It’s medicine; it’s not accounting.”
A number of studies have verified that distinguishing Alzheimer’s from conditions with overlapping effects is no easy call. Research based on an ongoing long-term study supported by the National Institute on Aging found that in cases it reviewed so far, one-third of Alzheimer’s diagnoses were incorrect.
“It’s craziness that we were led on a path to think he had Alzheimer’s,” Olsen said of her husband.
“He was too jolly, too smart. He read non-fiction books. He read the papers. He knew what was going on. I never fully bought into it.”
For years, the couple went about their daily business with the A-word firmly shadowing them. Bob would attend Rotary meetings, luncheons and church. He relied on an electric wheelchair, and would go to the grocery store to pick up a carton of milk.
His gait was short-stepped, and he rocked from imbalance. With Alzheimer’s, people generally walk normally. People with hydrocephalus may or may not have the short-term memory loss that plagues those with Alzheimer’s
Shafer said two very important parts of diagnosing a patient are taking a very thorough medical history, and doing a physical exam. And it behooves a patient to see a specialist and get a second opinion.
An MRI test of the brain is typically done, brain wave test and blood work which may indicate a low thyroid, b12 deficiency or infection.
The ability to diagnose many neurological disorders early in their course is very difficult, Shafer explained. “It can take 1 to 3 years for any neurological diseases to be teased out,” he said.
Also, people should bear in mind that some dementia disorders are treatable, Shafer added. In some 10 percent of cases of cognitive behavior, they’ve been able to find a reversible cause. These things could be acute or chronic infection, benign tumor of the brain or depression.