Coping With The Darkness

Anne Breon had been through it all before. For seven years she watched an aunt who had Alzheimer's disease languish in a traditional nursing home. The care was adequate, but Breon was desperate to do better for her aunt's sister, 88-year-old Lillian Reinke. Last fall she moved Reinke into a special Alzheimer's unit at Brighton Gardens, an assisted-living facility in suburban Chicago, where residents take field trips to a nearby arboretum, feed Daisy, the house dog, and visit a beauty shop to have their hair done. Even though some residents are in the middle stage of the disease, they seem to like the bustle and activity. Reinke can stroll from the kitchen through the sun porch to an enclosed garden without feeling trapped--but Breon doesn't have to worry that she'll wander out and get lost. A new Alzheimer's innovation, a personalized "memory box," which holds Reinke's old Christmas decorations and other mementos, helps guide her to her room. "Coming here is a joy," says Breon. At the nursing home, it felt as if the residents were "just closing out their lives," she says. Here, "they're still living."

For much of the last century, patients with dementia--deemed "senile" or "crazy"--were closeted away in their houses and in nursing homes, even in mental institutions, too often restrained by locked doors and sedatives. But now that Alzheimer's disease has a name and doctors know more about the progress of the illness, researchers are exploring new frontiers in providing care. Most of the new theories are focused on keeping people with Alzheimer's active and feeling productive. And residential facilities--ranging from small group homes to hotel chains like Marriott, which owns Brighton Gardens--are designing environments to reflect this new thinking. To be sure, caring for a loved one with Alzheimer's is still a horrific burden for most people--stressful and enormously expensive, with few services covered by insurance. Reinke's care, for instance, costs about $4,000 a month. But as the drive to treat Alzheimer's marches on, so, too, do efforts to improve the years that people live with it. "Even though they can't do what they used to do, that doesn't mean they can't enjoy life at the moment," says Dr. David Bennett, director of the Alzheimer's Disease Center at Chicago's Rush-Presbyterian-St. Luke's Medical Center.

One key shift involves attitudes about memory loss. Until recently, many health professionals used an approach called "reality orientation," in which patients are continually corrected ("No, it's not 1964, it's the year 2000," or "No, I'm not Aunt Milly, I'm your daughter"). Reality orientation is grounded in the idea that by fixing inaccuracies people may stay connected to the world, postponing the descent into total obscurity.

But many researchers now believe that reality orientation is unnecessarily combative, antagonizing patients and frustrating caregivers. Cleveland social worker Naomi Fiel, who was trained in the 1960s, noticed that repeatedly correcting patients made them withdrawn or hostile. She wrote a book about what she called "validation therapy," which teaches caregivers to be more accepting of the person's own version of reality. If someone asks to see her long-dead mother, "I say, 'You really miss her. Where is she now?' '' says Fiel. "I don't lie, I don't argue with her." Other experts use a more diversionary approach, gently changing the subject. The goal is to foster communication. "You're not emphasizing negativity, and you're helping them feel involved," says Kara Albisu of the Alzheimer's Association.

Conventional notions of "dignity" are also being redefined. Is behavior that may seem silly and childlike somehow demeaning? Now some researchers see it as offering a rich sense of connection and comfort. On a recent morning at the Kensington Park retirement community in Kensington, Md., an Alzheimer's resident named Emily stared blankly into space until she was handed a two-foot-tall toy bear. Immediately her face lit up and she began to laugh and sing. The novelist Iris Murdoch, who died of Alzheimer's last year, liked to watch "Teletubbies." A person's dignity comes from within, says Joanne Koenig-Coste, president of Alzheimer Consulting Associates in Framingham, Mass. Watching a grown woman cradle a doll, "you may be thinking, 'What a terrible life', " she says. "But it might be one of her happiest times, reliving and rethinking."

For some people with Alzheimer's, especially those in the early stages, talking with peers can offer solace. Every Tuesday and Thursday, Annette Simon, a petite 81-year-old, meets Lorraine Stangeland, 76, at the Alzheimer's Family Care Center in Chicago. Both have the disease. "There is a real bond here," Simon says, as she reaches for Stangeland's hand. The center, one of thousands of adult day-care programs across the country, keeps participants active, volunteering at food pantries, going to the movies. And together they air their fears and frustrations. "Sometimes with others who don't have it, I'm afraid they'll look down on me," says Simon. "Here I feel free."

Caregivers are also being encouraged to relieve their own stress, which can take a severe toll: as many as one third suffer from serious depression, studies say. The Internet now provides instant support groups. Pam Montambo, 39, of Ravenna, Mich., joins an Alzheimer's chat room every week. Last fall her father, 79, who suffers from late-stage hallucinations, mistook Montambo for an intruder, attacking her with his walker. The physical pain was nothing compared with the trauma of watching her father, a loving family man, turn violent. She logged on for support. "It helps to talk to other people," she says. "Otherwise, you would just sit down and cry."

Perhaps the most dramatic change has been in the surroundings: newly designed residential facilities are springing up all over. Specialists like Elizabeth Brawley, author of "Designing for Alzheimer's Disease," are calling for lots of light to eliminate frightening shadows and help reduce depression, which is also widespread in the Alzheimer's population. Light is especially important in the late afternoon and early evening, when a phenomenon known as sundowning kicks in. For some unknown reason, people with Alzheimer's can become increasingly agitated at the end of the day. It's also now considered to be OK for residents to do some wandering. Many facilities have enclosed gardens with circular paths so patients can stroll without getting lost. Researchers from the University of Pittsburgh and Carnegie Mellon University studied a pioneering design at a senior center with garden walkways: residents' mobility did not decline at all over an 18-month period, compared with a 25 percent drop at nursing homes.

Newer facilities are creating smaller and homier settings, too, which include kitchens and laundry rooms where residents can wash dishes and fold clothing. The tasks may seem mundane, but they can engage people who have lost their capacity to do so many other things. "It not only keeps them busy," says Uriel Cohen, of the University of Wisconsin-Milwaukee's Institute on Aging and Environment, "it gives them a sense of accomplishment and dignity."

Researchers are also experimenting with ways to calm residents' fiddling, pacing and outbursts, using everything from aromatherapy to aquariums. In one recent study, simple one-on-one social interaction--conversations about favorite foods or even clipping coupons together--helped reduce by half the disruptive verbal outbursts of nursing-home residents with dementia. Jiska Cohen-Mansfield, of the Research Institute of the Hebrew Home of Greater Washington and a coauthor of the study, says residents may have been acting out because they were lonely or bored.

Sometimes the simplest rituals workbest. Melanie Chavin, a certified music therapist and program director for the Alzheimer's Association's Chicagoland chapter, was conducting a drum circle with Alzheimer's residents when a quiet woman grabbed a tambourine out of Chavin's hands and began playing a complicated rhythm. The staff was stunned. The woman had advanced Alzheimer's and could barely speak. But her desire to communicate and her spirit were very much alive. Says Chavin: "She was saying, 'I'm still here and I can be productive'. " A powerful voice for the millions now living with Alzheimer's--and a powerful lesson for all who love them.