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's a shift with big ramifications.
Alzheimer's patients are joining their counterparts with cancer and HIV to lobby 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're 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."
More than 5 million Americans 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've 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 — Richmond, Va., Minneapolis and Oklahoma City — 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.
But early detection gives people a chance to plan for their future care while they still have the mental capacity to do so.
It also highlights some harsh unknowns. For example, do you medicate right away? Today's drugs merely alleviate symptoms for a temporary period.
"It's going to work a year or two and for whatever reason, it fades out. The question becomes, 'Do you want to use it now or wait until you become more symptomatic and maybe people are talking about your driving privileges?'" says Dr. Ronald Petersen, an Alzheimer's specialist at the Mayo Clinic.
Nor are there many support groups or research studies for high-functioning patients. Even the Alzheimer's Association acknowledges that until recently, its main focus in education and even legislative efforts for such things as respite care has been aimed at caregivers, not patients directly.
"What we're hearing from people with early-stage is they want that same level of attention," says program director Dr. Peter Reed, who monitored four meetings around the country that gathered about 300 such patients to advise the association about their needs.
One message: A huge hurdle is the stigma of a disease known mostly for its devastating end stage.
"Automatically people look at you like you're stupid," fumes Kris Bakowski, 52, of Athens, Ga., who was diagnosed at the unusually young age of 46 and had to sue to keep her job for almost two extra years, until her symptoms worsened. "Five minutes ago, you were carrying on a conversation. Now they see a big 'A' on your forehead."
But dealing with that hurdle is timely — because increasing early detection also is key to better research into ways to prevent Alzheimer's or at least slow its worsening, several dozenof the disease's top specialist wrote in last month's journal Alzheimer's & Dementia.
Treating memory symptoms is "like waiting until somebody with heart disease develops chest pains and then treating them," says Petersen, who co-authored the report with specialists gathered by the Lou Ruvo Brain Institute to identify research barriers.
A handful of experimental drugs are being tested for their potential to slow Alzheimer's by fighting the buildup of its hallmark brain plaque, called amyloid; some anxiously awaited study results are due out in July. Perhaps more important is testing the brains of healthy elderly people and those with mild memory problems to determine what changes signal impending Alzheimer's — so-called biomarkers that remain a critical gap in scientific understanding.
Meanwhile, early-diagnosed patients are filling some other gaps, as they share intimate details of how Alzheimer's stealthily infiltrates lives they're struggling to keep as normal as possible.
Take Bakowski, the Georgia woman. She handled flying on an airplane alone to last month's Washington lobbying trip, albeit with a brief panic attack when she had to ask for directions in the airport.
But on her "Creating Memories" blog, Bakowski describes how her brain can freeze over math: A store clerk asked for more cash when she paid a $27 bill with $17, and "I understood what she was saying but I couldn't wrap my mind around it in order to give her more money."