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Sunday, March 25, 2012
Dementia's youngest victims often defy stereotypes
From USA Today:
The aging of the massive post-World War II baby boom generation in the U.S. is casting light on early onset dementia, a sorrowful subset of younger people experiencing a slow, cruel overtaking of their minds.
About 200,000 Americans under 65 are among the 5.4 million Americans suffering from Alzheimer's disease, according to the Alzheimer's Association. Experts' estimates suggest there's a similar number of younger people with other types of dementia, meaning about a half-million Americans, some as young as their 30s, suffer from early-onset or younger-onset dementia.
The number of people suffering from all types of dementia is rapidly increasing because of the aging of the baby boom generation — the 78 million Americans born between 1946 and 1964 — though there's no sign the percentage of younger people with dementia is going up.
Doreen Watson-Beard is one of the tiny minority. And she has seen the disease from two sides.
The nurse cared for more people with dementia than she could count. She was so moved by her patients that she led Alzheimer's support groups. She knew the warning signs and understood there was no cure.
But the 49-year-old never thought the disease would affect someone her age.
The first clues surfaced around five years ago, when she was 44. She'd forget to pick up her grandchildren at school or plans she made with her husband. She wrote down the wrong medication dosage for a patient. "I have no idea what's going on," she remembered telling her doctor.
Watson-Beard says she was diagnosed two or three years ago; she has trouble remembering the exact time. Forgetfulness was one of her first symptoms; her husband would ask if she was ready to leave and she'd have no recollection they made plans. She became less socially conscious, hanging up abruptly with her boss in the middle of a conversation she thought was finished.
She kept going to work at an assisted living facility near her central Florida home, while caring for her husband, who had liver cancer. She dismissed the symptoms as stress. When her husband died about three years ago, the symptoms continued. She thought it was grief. But it wasn't getting better.
"I thought if I ignored it long enough, it would go away," she said.
Problems at work began cropping up, too. Once, Watson-Beard couldn't figure out how to do a complicated wound dressing — something she'd done many times before. Another time, she wrote down the wrong dosage of a medication on a patient's discharge plan — luckily, that mistake was caught by a pharmacist.
Worried someone might be harmed, she went to the doctor.
She was informed she had dementia, though her doctor has not yet classified it more specifically as Alzheimer's, dementia's most common form. She was told to prepare for the future.
Dr. Marc Agronin, a geriatric psychiatrist at Miami Jewish Health Systems and author of "How We Age," says symptoms of dementia in a younger patient can be glaring. But diagnosis is often complicated by the fact that it's so uncommon in younger patients and that so many other conditions could cause the symptoms.
Agronin sees no evidence of an increasing rate of early-onset dementia, but there is increased interest. At the memory clinic he runs at Miami Jewish, he has seen an uptick in younger patients concerned their memory lapses mean they have Alzheimer's. They're almost always wrong.
When they're not, the diagnosis can be devastating.
"It's very distressing because they come in and they have young spouses and some of them have kids in grade school," Agronin said. "It's frightening to see someone so young becoming so impaired."
Beth Kallmyer, a social worker at the Alzheimer's Association, said younger people with dementia often get incredulous reactions from others when they share their diagnosis. Many don't realize the disease can affect those who aren't very old.
Kallmyer notes it also frequently forces people to quit their job during their top earning years.
"It can be financially devastating," she said.
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