Alzheimer's Today
Once considered an elderly affliction, it is now claiming younger victims
In the years before they are diagnosed with the disease, younger people may fail at and lose their jobs, leaving their families in financial hardship and having to wait years before qualifying for disability or Social Security. After diagnosis, Schneider says, "friends and employers sometimes turn away from us, like they're afraid they might catch the disease."
Since most dementia-support programs are geared for infirm, aged people who can't take care of themselves, people like Schneider started pushing for change a few years ago. That effort has finally begun to yield some results: Six months ago, the national Alzheimer's Association issued its first report acknowledging early-onset disease as a widespread problem. It wants to see a greater role for early-onset patients in clinical trials to help develop new medicines before they decline further, in addition to more support programs geared to younger sufferers. The association has put together a national advisory panel of people with dementia, including Schneider, to help turn these ideas into action. "We'd like people to stop thinking of us as the walking dead and instead, as impaired survivors, people with a handicap," says Schneider. "We're the first people who have been inside Alzheimer's and can tell you what it's like, and we want you to listen."
Though they have a progressive and incurable brain disease that impairs them, many younger sufferers remain relatively sharp and active while they try to figure out how they can continue to make meaningful lives for themselves. "My husband works a lot, usually 60 hours a week," says Alzheimer's patient Karen Waterhouse of St. Charles, Mo., who was diagnosed at age 49 and has become friends with Schneider. She had to quit her job because she couldn't memorize new material. "So I do all the bills and take care of everything around the house. I read every day. I have three daughters, one still living at home, and I take care of all that. But I have to push myself."
The cut-off point for early-onset dementia is age 65. Most of the 6.8 million Americans with Alzheimer's and related diseases are older. For Alzheimer's, the illness takes the shape of odd plaques and tangles of proteins–called amyloid and tau–that dot the brain and kill off neurons. The next most common form is vascular dementia, usually caused by a series of ministrokes. Then there's frontal-temporal dementia, characterized by the death of neurons in the front of the brain. All of these diseases cause cognitive impairment, usually memory loss but also problems in other domains such as language or judgment, to the point where a victim is not able to fix meals, bathe, or do other daily tasks without a struggle. Dementias can have early, moderate, and late stages; early-onset patients are usually picked up at the early stage.
The notion that young people don't get dementia is ironic. Back in 1906, German neurologist Alois Alzheimer's first patient whose brain showed the hallmarks of the disease was 51 years old. For most of the following century, Alzheimer's was known as "presenile dementia," a brain ailment of the relatively young. Doctors thought older people who lost memory suffered from something entirely different: atherosclerosis, or hardening of the arteries. It was not until the 1970s, when doctors began closely examining the brains of older demented people that they saw the same plaques and tangles identified by Alzheimer. The disease became the scourge of the aged. That it could affect those in midlife was largely forgotten. Until people like Schneider and Waterhouse began receiving the startling diagnosis.
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