Often, when he looks up from watching CNN in his den, Les Dennis finds himself staring at a sign on the wall that reads: “dementia.”
It reminds him of who he is today: a 68-year-old man in the early stages of Alzheimer’s disease, a progressive and incurable condition that will eventually steal his memories and most of what he knows. That prospect is extraordinarily painful, but Dennis wants to be conscious of his illness as it unfolds. That’s why he put up the sign.
“This is something I need to deal with,” says the burly, plain-spoken former college professor and union adviser. “I want to be as aware as I can.”
As medical advances, including sophisticated brain imaging, promote early diagnoses of Alzheimer’s and related diseases, Dennis is among a growing group of people living in the no man’s land of beginning-stage Alzheimer’s and other dementias. While estimates are rough, 48 percent of the 4.5 million Americans thought to have Alzheimer’s-or more than 2 million people-are believed to be in the illness’ early stages, according to a 2003 study in the Archives of Neurology.
“Our whole sense of Alzheimer’s is shifting, as we’ve really begun to understand the great diversity of people who are living with this illness,” says Daniel Kuhn, education director at Mather Institute on Aging in Evanston. (The term Alzheimer’s is commonly used to represent dementias of all kinds.)
As with the late President Ronald Reagan, who told the world he had early Alzheimer’s a decade ago, most of these people are aware of the mental deterioration that lies ahead.
In contrast to Reagan’s stoic acceptance and withdrawal from public life, however, a new activism has begun to arise among some dementia sufferers.
They lobby for services and research funding, form support groups and write books. In Chicago, three independent groups already meet regularly; among other large cities, New York has six and San Diego four.
“People with early-stage Alzheimer’s have really moved front and center in this field over the past few years,” says Melanie Chavin, a top official with the Greater Illinois Chapter of the Alzheimer’s Association. They are seeking to retain their independence as long as possible, reach out amid growing isolation to connect with others, and convince the public that dementia does not necessarily equate with helplessness and incompetence.
This is the stereotype of Alzheimer’s: an elderly woman with a blank stare who doesn’t recognize her own children and who can no longer reliably dress, bathe or even feed herself.
Even though that represents the end-stage of the disease, it has come to define how all Alzheimer’s sufferers are perceived. The reality of early-stage Alzheimer’s and other dementias, as described by patients and several experts, is that the symptoms are not necessarily severe and they come and go. The symptoms include problems remembering things that happened recently-but not all of the time-and thought processes that slow down but can remain keen for a considerable time.
Too much stimulation or stress-many people talking loudly in a room, for instance, or being hurried to complete a task-can cause disorientation, and in many cases, the ability to initiate activities can become impaired. That doesn’t mean people can’t function, experts say, they just need to take things slowly, avoid becoming overwhelmed and get help in starting activities.
n a recent sunny afternoon, Dorothy Washington, who has a type of dementia caused by multiple small strokes, seems sharp as a tack.
“I don’t want anyone writing me off yet,” says the former community activist, who lives on the West Side near the United Center. “When you see me in my coffin, that’s when it stops. But as long as I’m here, I don’t want to be treated like a stone.
“When you walk in the door here, I’m Mrs. Washington,” she tells a visitor as three of her four children sit nearby. “I’m the head person in this house-not my sons, not my daughters. I may forget someone’s name, but I always greet them with a smile.”
In her apartment, the 78-year-old Washington, who was diagnosed about five years ago, follows a strict routine: Dressing in the morning starts with stockings on her feet and moves upward, until she puts on a blouse for the day.
Even Washington’s medicines get taken in a certain order, so there is no confusion about what to do. Her purse is always placed in the hallway when she comes in. At night, she folds her slacks and shirts and puts them on two racks near her bed.
“Keep her in a normal place and everything falls into place,” says Wayne Washington, her 51-year-old son. “When she goes out of the routine, then everything falls out of place.”
He has learned the rhythms of his mother’s days. Early in the morning, her energy and alertness are low. Midday, she’s bubbling over with thoughts, feelings and perceptions. Late in the afternoon, things slow down again.
On a bad day, when she begins slipping into the past and losing touch with the present, Washington tells her family and friends, “Remind me, ‘Dorothy, today, today’ . . . help pull me back.”
She has little patience with people who say things like “Oh, your hair looks so nice today” in a sing-song tone usually reserved for young children and feeble adults.
” ‘I did comb my hair this morning. It’s something I do every day,’ ” she says she sometimes responds. ” ‘I also take a bath and put on my clothes. You don’t want me to come down here bare, do you?’ “
Feelings of being ignored or patronized are common among early-stage dementia patients. “It’s all: ‘You can’t do this, you better not do that, it’s not safe,’ ” says Dennis, who once worked on labor issues in foreign countries for the CIA and taught at Loyola University before retiring two years ago. “People start taking away just about everything.”
He remembers the first time he met with a physician after being diagnosed with Alzheimer’s and getting angrier and angrier as the doctor talked only with his wife and son. As the physician prepared to leave the room, Dennis stopped him. “Now, it’s time for you to deal with me and find out what I need,” he told the physician, who then spent an hour alone with Dennis.
Though he’s slowing down, Dennis gardens outside his Printer’s Row apartment, walks his dog, keeps up with the news, lingers over puzzles and advocates on behalf of patients with early-stage dementia.
“I was always a go-go person, on the run,” he says. “This has helped me help others like I never did before. It’s an experience I’m happy to have.”
Traditionally, Alzheimer’s organizations have pursued two basic goals: advancing scientific research about dementia and supporting caregivers. Only recently have programs for patients at the beginning of the illness become a priority.
or example, at Northwestern University’s Feinberg School of Medicine, first-year students follow someone living with Alzheimer’s for a full year so they can learn what it’s like to cope with dementia.
For the first time recently, a dinner-dance for men and women with Alzheimer’s and other brain diseases was held in Massachusetts. Gathering places where people with Alzheimer’s can meet socially-one is expected to open in Chicago later this year at Grace Place in Printer’s Row-are being explored, building on the success of “Alzheimer’s cafes” launched in Europe over the past several years.
Meanwhile, once silent voices are being heard as early-stage individuals speak at Alzheimer’s conferences and lobby Congress and statehouse legislators. A recent focus of activity has been a bill introduced in Congress after former President Ronald Reagan’s death to expand funding for Alzheimer’s research and services.
Research has focused mainly on the promise of drug therapies, but the drugs now available can only delay the acceleration of symptoms, and only in some people for a limited time.
Recent studies, however, show that people with early-stage Alzheimer’s can retain the ability to learn if they are exposed to activities that stimulate undamaged parts of their brains.
At the Family Care Center on North Cicero Avenue, the focus is on tailoring care to match dementia patients’ remaining abilities as well as their individual levels of disability. Aides routinely monitor people, taking notes on how they respond to various activities and encounters and grouping them accordingly, so that people who no longer can speak are not spending their days with those like Dorothy Washington, who can still recite the Lord’s Prayer.
Families are a part of the treatment. A daughter puzzled by her mother’s refusal to vacuum, after a lifetime of meticulous housekeeping, was advised that open-ended questions-“Mom, would you like to vacuum?”-can sometimes leave people with dementia at a loss. Instead, a staff member suggested to the daughter, plug the vacuum into a socket, turn it on and put it in your mother’s hands. See how she responds. In this case, it worked.
Besides its individualized care, the center is a place where people with dementia can simply be themselves without having to endure the unspoken regret that family members sometimes convey-“If only she could be the person she once was”-which can sting like a rebuke.
“You feel relief from worrying about anything,” including doing things wrong or having an accident, says Loretta Andrews, a cheerful white-haired woman who loves to dance and used to sell hosiery.
On a recent afternoon, more than 15 white-haired men and women in a high-functioning group gathered before lunch for an hour of conversation. Dorothy Seman, the center’s longtime program director, asked them what they needed from other people.
“Patience,” replied Marie Carlson, who likes to keep a book on her lap, even if she can’t describe the chapters she has just read. “And let me do what I can do.”
“Do you think it’s possible to let someone really know how you feel?” asked Washington, who had settled in the corner of the room with her walker.
“Provided they’re willing to listen,” snapped a man named Jack, recently out of the hospital, whose eyes expressed a mix of sadness and defiance.
There are diseases you get, like diabetes, and diseases you become, like Alzheimer’s, Seman observes. Once people know of a man or woman’s Alzheimer’s diagnosis, everything is interpreted in that light.
That rankles Jenny Knauss, 67, who for 20 years served as the executive director of the Illinois Caucus on Adolescent Health before learning she had Alzheimer’s two years ago.
These days, she often sketches at the Art Institute, travels with her husband, Don Moyer, runs an advocacy Web site, “Alzheimer’s Spoken Here,” and speaks publicly about what it means to have the disease.
“It’s just one thing in your life, particularly at our stage,” said Knauss, a plain-spoken woman with a crisp British accent, at a recent support-group meeting at Northwestern Memorial Hospital. “Even if things get a little fuzzy, you haven’t dropped all the other things that make you who you are. It’s not like you become another person. The essential you is still central.”
Elaine Lasine, 77, a tall, soft-spoken woman, described what it’s like to enter a room, have people look at her and realize they know she’s ill. “They’re so afraid . . . they back away in a minute, they can’t get away fast enough,” she said, shaking her head. “It makes me want to . . . say: ” ‘Look at me! I’m a person just like you!’ “
Voyer Howell, whose expressive face brims with emotion, told the group about a dream he had had the night before. He was supposed to go to a “gathering like this” but when he got there the door was locked. “I knocked and knocked” and when someone finally answered, “they didn’t understand me,” he said. “I’m standing there and wondering why I can’t get in and they don’t understand.”
The group falls silent, absorbing the image of being shut out and wanting connection.
As the meeting ended, Knauss came over to walk Lasine to her apartment in Streeterville, then stroll by herself to Printer’s Row, enjoying the parade of tulips along Michigan Avenue. There’s no reason to hurry; the colors are so rich, and home awaits.
“Small pleasures,” Knauss said, her hand tucked under Lasine’s arm.
