By LAURAN NEERGAARD
AP Medical Writer
WASHINGTON (AP) — Don Hayen has a handy way of deflecting the instant pity that comes when he reveals his Alzheimer's disease: ''But I haven't lost my keys all day,'' he quickly jokes.
Hayen is part of a growing new movement in Alzheimer's: Patients diagnosed early enough to still be articulate and demand better care and better research. They are giving a voice to a disease whose victims until now have remained largely silent, and powerless.
It is a shift with big ramifications.
Alzheimer's patients are joining their counterparts with cancer and HIV to lobby the U.S. Congress for more money to hunt treatments. Some are advising top scientists to push for higher-stakes research even if it means higher risks. They are even offering unprecedented glimpses into how a mind slowly unravels as they blog about their dementia.
''It's labeled incurable and you end up being a vegetable. People think as soon as you're labeled that way, you are. A lot of us aren't,'' says Hayen, 74, a retired San Diego physician who joined about 30 other early-stage Alzheimer's patients last month for a lobbying blitz at the nation's capital.
''I can still speak for those who can't.''
Millions of peopple are are estimated to be living with Alzheimer's disease, although no one knows how many have been diagnosed. But research suggests as many as half of Alzheimer's sufferers may be in the disease's early stages. Doctors say they have begun diagnosing far more people who still have years of independent living ahead them than they did just a few years ago.
And this week, the Alzheimer's Association begins pilot-testing a campaign in three cities aimed at increasing early diagnosis. ''Know the signs — early detection matters,'' advertising will urge.
Diagnosis can be difficult. There is no single test for dementia. Memory problems aren't always even the obvious first symptom; Hayen cites unprovoked anger and disorientation.