En español | In warm weather, 81-year-old Libby Nye spends time with friends and family in New Hampshire, soaking up sun at the lake club. And during the winter months in Florida, she and husband Joe golf. While the adjustments they make to accommodate advancing Alzheimer's disease seem relatively small — "scoring is too confusing, so I'll play a few holes now and she putts," Joe says — the Nyes are on the edge of a revolution in how America handles dementia.
See also: The Alzheimer's Photography Project
"I'm sometimes embarrassed," admits daughter Susan, 55, who lives in New London, N.H. "Mom may interject nonsense into a conversation, like blurting out 'Eenie, meenie, miney, mo.' But the people who know and love her can understand what Alzheimer's is doing to her, and make adjustments. And if they can't, they were never really our friends in the first place."
William and Joan Speidel, 75, of Macon, Ga., would agree. Since Joan's diagnosis last year, they make regular appearances for the local Alzheimer's Association. "Joan is very open," William says. "She may be losing her brain function, but she's not losing her heart. We're making an impression about what Alzheimer's can look like, and that makes us both feel good."
These families are part of a blossoming civil rights movement. "We've got an advisory board of members in the early stages of the disease who constantly remind us: 'We are out there, and people are going to see us out there.' The more patients and families speak up in public, the quicker the perception of Alzheimer's will change," says Beth Kallmyer, a social worker with the national Alzheimer's Association in Chicago.
It's a movement fueled by astounding numbers: About 5.3 million Americans have Alzheimer's; worldwide, 26.6 million have it (by 2050, experts expect the population will soar to 106 million). One in five women will develop the disease, and one in 10 men; it is more common among African Americans and Latinos. On average, people live between eight to 10 years after they are diagnosed, and 70 percent receive care at home. Given those realities, working harder to include Alzheimer's patients in more aspects of daily life is not only the best option — it is the only practical option for their families.
But that's not to say it's always easy. Because Alzheimer's has so many disconcerting symptoms — patients may blurt out swear words, start undressing at the dinner table or become very fearful — families often begin to become more isolated, bringing their loved ones out as little as possible. Sometimes that isolation makes sense. "As you get into the later stages, it's not always great to change environments," says Dr. Ken Robbins, a clinical professor of psychiatry at the University of Wisconsin-Madison, who helped develop the "Steps & Stages" forums at Caring.com, which offer stage-specific support for caregivers. "Even a trip to a restaurant can be disorienting." But often, experts say, it's a self-imposed exile, part of the distress over the way Alzheimer's eventually steals the people we love.
Still, there are plenty of ways to keep Alzheimer's patients connected, strengthening their ties both to the outside world and to their families:
Take it day by day. When families are first taking in the diagnosis, "it's hard not to fast-forward to the worst possible scenarios, a tendency experts call 'catastrophizing,'" Kallmyer says. "But it's important to remember that every case is different, and develops over time. As more people get diagnosed early, still living their lives, Alzheimer's turns out to be not as paralyzing as many families imagined it might be."
Keep routines going as long as possible. Linda Leonard, 59, of Arnold, Md., loves bringing her mother to weekly religious services. "Even though she is confused, this place is familiar to her, and these people have known us a long time," she says. "They know she's ill — they don't treat her any differently." For Luckie Daniels, 44, and her