Confronting Alzheimer's

A man is sitting next to her. She knows his name is Frank, but that is all she knows. She doesn't remember that when they met, she was head cheerleader and he was considered the best-looking guy in town. She doesn't remember that they've been married nearly 63 years and have raised two daughters, Michel Webb, 55, and Melinda Proza, 46. She doesn't know that her daughters and Frank, 85, try to watch her constantly because they're terrified she will wander off. She doesn't even know her own name. It is Helen Erskine. She is 81 years old and she has Alzheimer's disease—a devastating diagnosis. "Only people who have this in their family could possibly understand what we're going through," says Webb, a Dallas banker. With other diseases, she says, "there's usually a progression, a treatment, and you're hopeful for a positive end. With Alzheimer's, there is no positive end."

That is the constant sad reality of life with Alzheimer's, the most common type of dementia. It is an emotionally wrenching journey that millions of baby boomers share now that so many of their parents are living past 80, the age when the incidence of all types of dementia rises sharply. Alzheimer's currently afflicts more than 5 million Americans and 70 percent of them live at home, where they are cared for by many millions of daughters, sons and spouses. Caregivers can be younger or older, but demographic reality means that the weight of work is falling largely on those born between 1946 and 1964. As they watch their parents' inevitable decline, boomers can't help but see a disturbing glimpse of their own potential future. By 2050, the number of Americans with Alzheimer's and other dementias could soar to 16 million. The grim prospect of impending dementia has turned many caregivers into activists urgently pushing for research funds. "It's a coming crisis in health care," says Harry Johns, president and CEO of the Alzheimer's Association, whose own mother had Alzheimer's and died in April. The human cost is crushing, says Johns: "It's emotionally, physically and financially draining."

The time between diagnosis and death can be more than a decade, with each day bringing new heartache for overwhelmed families. Although Alzheimer's is always fatal, the course of the disease is unpredictable. In some cases, decline can be sudden; a mother will be able to recognize her daughter one day but not the next. Other patients stay at a relatively functional level for years before deteriorating. Mary Mittelman, who runs the Alzheimer's support program at New York University, says that living with uncertainty is a major reason that "the stress is so much worse than caring for someone with another disease." The skills a caregiver learns in the early days, when memory loss is minor, are of "very little use" in later stages, when behavior and physical problems become much more severe, says Mittelman. Coping with issues like incontinence or periods of screaming can undo even family members who vowed never to put their parent in a nursing home.

Support groups can help, but many caregivers say they don't have the time or energy to participate. They're balancing their parents' needs with the ongoing demands of work and, often, raising their own kids. Many report significant symptoms of depression as well as frequent anxiety, frustration and anger, says Stanford psychologist Dolores Gallagher-Thompson, who studies caregivers. "They tend to have recurrent negative thoughts about themselves," she says. "They don't feel they're doing a good enough job." Those emotional problems as well as the intense physical demands of caregiving can have serious health consequences. Caregivers are more likely to neglect their own medical care and show high levels of stress hormones and diminished immune response—all of which lead to an increased risk of heart disease and cancer.

Even with the very best of intentions and resources, families constantly struggle. Tim Kidwell, 56, cares for his mother, Grace, 78, who was diagnosed with Alzheimer's a year ago, and his father, John, 80, who has leukemia. His parents live in an apartment near his house in St. Louis, and caring for them has become so time-consuming that he recently quit his job as creative director at an ad agency and is freelancing. "You do what you feel is most important," he says.

The strain of nursing an ailing parent often exacerbates long-simmering family tensions. Sons or daughters who never got along with their parents are the most likely to feel trapped by their obligations. "You're going to have a much harder time caring for somebody who never met your needs," says social worker Darby Morhardt, a professor in the Alzheimer's disease center at Northwestern University. Sibling relationships can also fray—especially when one son or daughter lives nearby and others are far away. "The sibling who lives far away doesn't appreciate the challenges, so they think Mom or Dad is doing better than the other sibling believes," says psychologist Elizabeth Edgerly, chief program officer for the Alzheimer's Association in Mountain View, Calif.