Schneider is a former cop, fireman, and part-time private investigator. He needs these missives to get him through each and every day, because he's losing his mind. Schneider has Alzheimer's disease, and he's only 55 years old. "I think we keep the Post-it people in business," he says, settling back into an easy chair in his two-bedroom apartment about 45 minutes west of St. Louis. He and Barb moved there at the end of 2005, two years after he was diagnosed with early-onset Alzheimer's. The couple hoped that selling their large house would simplify Schneider's life, making it easier for him to find things in a smaller space. "We can still talk and drive and even work in some jobs," Schneider says, "but we need reminders to help us get by."
By "we," Schneider means the several hundred thousand people-perhaps as many as 640,000-under the age of 65 who have dementia, the vicious thief of minds that steals memories, personality, relationships, language, and ultimately the ability to function as a human being. Alzheimer's is the most common form of the disease. Recently, thanks to better diagnostic tests that lead to earlier detection, the medical community has started to recognize that dementia is an equal-opportunity destroyer. "In the last five years, more younger people have been showing up at support group meetings and in doctors' offices, asking for help, and we realized this is something we need to start taking seriously," says neurologist Ronald Petersen, an Alzheimer's and memory disorders specialist at the Mayo Clinic. It afflicts people in their 50s, their 40s, and even in their 30s. "Alzheimer's is not just a disease that hits 80-year-olds in nursing homes," says Dallas Anderson, a specialist in the epidemiology of dementia at the National Institute on Aging.
"The walking dead"? The disease may be the same for all ages, but everything about having it is different for its younger victims. Unlike older patients who are typically retired, confined to an assisted-living facility, and whose children are grown, young sufferers are in their prime: workers, mothers and fathers, and caretakers who have duties and responsibilities, car payments, and mortgages. They suffer with memory troubles for years without an accurate diagnosis, since many general physicians still regard dementia as a disease of the aged and infirm. "Nationally," says Pierre Tariot, director of the Memory Disorders Clinic at the Banner Alzheimer's Institute in Phoenix, "there's not enough help for younger people with dementia-or older people." There is some basic research, though. Scientists studying the genes of younger patients have found three mutations that seem to make some susceptible to the disease. But these genes don't explain most of the cases, says John Morris, director of the Alzheimer's Disease Research Center at Washington University in St. Louis. The research is important, he says, "but because of where they are in life, they also need a lot more social support."
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 fw 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.
Schneider's life seemed perfectly normal, with no hint of what was to come. He married, had two children and eventually five grandchildren, and he and his wife became foster parents. He entered the police force in 1977, and worked as a cop in various towns around St. Louis for 10 years and after that, as a fireman. He earned extra money picking up some home remodeling work and building fences. He also moonlighted as a private investigator.
Then around 2001, when Schneider was 50 years old, things started to seem, well, not quite right with both his body and his mind. Schneider was no stranger to physical ailments. In 1995, he got weak and bedridden, sick with what turned out to be a wheat, or gluten, allergy. The next year, he was diagnosed with diabetes and started taking pills and insulin shots. But this was different. "My coordinaion and balance were off," he says. "I had trouble hitting a light switch when I reached out for it. I found that I really had to concentrate on all my movements."
Over the next two years, memory troubles became more apparent. "At the firehouse, I had to leave my locker open because I kept forgetting the combination," says Schneider. "I had to open every compartment in the firetruck to find a piece of equipment. My driving was OK, because I had grown up in these neighborhoods and knew the streets." But Schneider's short-term memory was failing. "I couldn't recall the names of guys that I worked with." But the last straw, says Schneider, was when he forgot his wife's name, after 35 years of marriage. "So that was just terrible, and I knew something was really wrong."
First, a doctor told him he might have multiple sclerosis. Brain scans ruled that out. Hypertension, depression, and anxiety were all considered. Finally, in late 2003, after a complete neurological workup, a physician diagnosed Alzheimer's. Schneider retired from the fire department several months later, on disability.
"Like a flashlight.>" The long slog to a diagnosis isn't unusual for early-onset patients, says the Mayo Clinic's Petersen. Part of the problem is that physicians still don't think of dementia as the cause of memory problems in younger people. And there are a lot of other potential causes that need to be ruled out. "It could be MS, or lupus, or an unusual depression, or mild cognitive impairment," says Petersen.
To rule Alzheimer's in or out, a patient's family history is examined. That's especially important with early-onset victims, since a large number of them have a close relative who had serious memory problems. Then the patient undergoes a series of neuropsychological tests. "We need to find memory impairment plus problems in at least one other domain, such as attention or language," says David Salmon, a neuropsychologist and Alzheimer's specialist at the University of California-San Diego.
If dementia is the likely suspect, brain scans such as magnetic resonance imaging or positron emission tomography can help zero in on the specific type. So can a spinal tap. "None of these are good enough by themselves," says Petersen. "So you have to put them all together. Then you can look at your patient and say, 'I hate to say it, but it looks like it's likely to be Alzheimer's.' And then you talk to them about medications like Aricept or Namenda, which seem to keep the disease at bay for a while."
These are drugs that appear to enhance chemicals involved in the brain's abilities to form memories (box, below). They are two of five medications that are approved for mild to moderate dementia, and studies have shown that they stabilize people for several months to a year or two, helping to retain recall and language ability and keep the general mental state from getting worse. It's a limited respite, however, and eventually the decline continues.
Schneider, who says Namenda has really helped him, finds that his major complaint is a lack of focus. "With dementia, your brain is no longer like a light bulb, casting light everywhere at once," says Schneider. "It's more like a flashlight. You can only shine it on one thing." For example, he'll start to sweep the kitchen floor and plan to take out the garbage. So he'll look at the floor. Then wonder where the broom is. Ah, it's in the closet. So he goes to the closet, which is a mess. He thinks he should straighten it up. And by the time he's done with that, Schneider has completely forgotten about the garbage. "So I keep lists and write notes."
Younger dementia patients also often lose something integral to their livelihoods and personal satisfaction that most of their older counterparts don't: their jobs. Waterhouse was working in a payroll office in 2004 when her supervisor offered her a transfer. "I had always been good at math, but I guess h noticed that I was making some mistakes, or was taking a really long time to get things done," she says. The new job entailed answering questions from the public about city services. "That's where I ran into trouble," says Waterhouse. "There was this big brochure about different city services that we were supposed to work with, but I couldn't memorize it." So Waterhouse asked to go on medical leave, while she made the rounds of doctors. Several months later, with a confirmed Alzheimer's diagnosis, she quit.
That gives many early-onset sufferers a lot of time on their hands, and they channel their energies toward battling the disease. Schneider and several other friends started a support group about eight months ago, after finding that most other such groups are made up of 70- and 80-year-olds or are aimed at caregivers. "Part of it, honestly, is to keep us from losing our minds," Schneider says. The group gets together every month at a member's house and shares experiences and coping tips: Some of the favorites include brain games such as puzzles, meditation, and continuing education classes. "Trying to keep up with a bunch of normal people is exhausting for me," says Schneider, who adds that it takes him a bit longer to come up with words or concepts. "But these people go at my pace, and it feels much more relaxed and easier to keep up."
Advocacy groups are also responding to the need for specialized programs and support. Stephen McConnell, the Alzheimer's Association's vice president for advocacy and public policy, says the group is lobbying Congress for more money to study the specific needs of early-onset patients. Earlier this year the group was successful in getting Congress to expand eligibility for federal family caregiver support programs for the under-60 crowd, allowing early-onset patients to go to day-care centers funded by these programs. "That's real progress," says McConnell, though he adds that other efforts to get early-onset patients increased eligibility for Medicare disability insurance have failed so far.
Dark days. In the clinical trial arena, studies of new therapies are aimed mostly at the older population of dementia sufferers-not surprising as there are so many more of them. But younger victims desperately want to participate. "If there was a potential treatment that was pretty risky, I'd be willing," says Gerry Michalak of Getzville, N.Y., 63, a former schoolteacher who was diagnosed with Alzheimer's in 2005, six years after he first started having memory problems. "Hey, if things stay as they are now, I'm going to die anyway."
The disease, and the constant struggle to keep the mind in working order, can easily drive younger people with family and other demands into deep depression. Tracy Mobley, who was diagnosed with Alzheimer's four years ago at the age of 38, says there was a time when she felt at the end of her rope. "I just stopped trying to live. I stopped taking my pills," says the 42-year-old from Springfield, Mo. "And, of course, that made things a lot worse." The dark days stretched into a week, until her husband and a friend talked about what she did still have to live for: Austin, her 12-year-old. "I realized that I still had a son to raise," says Mobley. "I've had a few bad episodes since then, but I know I have to keep fighting for my family."
Schneider is counting on his strong faith-he prays regularly and fervently and believes that God will not give him troubles that his faith can't handle-to carry him through the deeper stages of Alzheimer's. He's heard all about the hostility, the paranoia, and the rages that later accompany forgetfulness. This is all too common among patients who view family as strangers, ordering them around and stealing from them objects that they can't recall putting someplace else. The idea of turning on his family scares him more than anything.
But since there's no sign of that yet, Schneider focses on more positive things, like his latest campaign to find a place for early-onset Alzheimer's patients to spend their days to avoid becoming shut-ins. The model: community cafes for dementia patients first developed in Australia. "For people just with memory problems, and who can still communicate a little, they can go in there, drink coffee, play checkers, and talk to each other a little while their spouses go out and handle business instead of having to watch them 24 hours a day," says Schneider. For them, it would be a tiny bit of normalcy in an increasingly abnormal world.
By Josh Fischman