Some of the most dedicated health care workers in America never asked for their positions. They certainly didn't ask for long hours, endless tasks and the sort of on-the-job stress that would make most people look for a different occupation. But they still report to work every day. When a spouse or a parent comes down with Alzheimer's disease, quitting isn't much of an option.
The army of 10 million wives, husbands, sons and daughters caring for people with Alzheimer's or another form of dementia rarely gets the recognition they deserve. According to a new report, A Woman's Nation Takes on Alzheimer's, 60 percent of caregivers are women, and a third of those women are caring for a person with Alzheimer's round the clock. And nearly 40 percent say when it comes to caregiving, they don't have a choice.
Although many programs and resources can make their jobs easier, caregivers almost always wait too long to get help, says Beth Kallmyer, senior director of constituent services at the Alzheimer's Association. "Caregiving is not something that you can do on your own," she says. "People who try to do it by themselves get sick."
As soon as Alzheimer's is diagnosed, caregivers need to start considering their options, says Donna Schempp, special projects consultant at the Family Caregiver Alliance. "A lot of people wait until they're in crisis mode," she says, "and that's not a good time to make decisions." Calling a local chapter of the Alzheimer's Association or the association's 24-hour help line — 1-800-272-3900 — is a great place to start. Schempp also recommends reaching out to friends and family who can share some of the load, whether it's taking the patient to a doctor's appointment or making an occasional meal. "If someone offers help, the answer should always be yes," she says. "You need to learn to accept help before you think you need it."
Because every family is different — and so is every case of Alzheimer's — there's no such thing as a typical caregiving situation, says Steven Zarit, a professor of human development at Pennsylvania State University. In interviews with caregivers, Zarit has seen the whole spectrum. Some are so frazzled that they can barely hang on, while others seem to thrive in their new role. What makes the difference?
Zarit has found two potential obstacles that are particularly hard on caregivers. The first is family conflict: When siblings or other relatives don't stand behind a caregiver, the job becomes even more difficult and emotionally draining. Behavioral problems are the second major stumbling block. No matter how much support a person has, it's hard to care for someone who wanders the house at night or swears at strangers at the grocery store.
Struggling or not, caregivers can get a much-needed break with the help of adult day care, Zarit says. With more than 4,600 centers across the country, good programs are available. They aren't especially expensive, either. The average cost for eight to 10 hours of care is about $69. (Medicaid or private health insurance may help cover some of this cost.) Caregivers get time for themselves, and patients get a chance to socialize with other people and participate in brain-stimulating activities such as arts and crafts and sing-alongs. Often, patients who attend adult day care programs have fewer behavior problems at home, he says.
Support groups are worth trying, too, Zarit says. The groups, available in almost every community, combat feelings of isolation and loneliness, and they're also a great source of information. (You can search for groups near you at www.alz.org.) "If you want to know who's the best doctor in town or which local agencies actually follow up on requests, go to a support group," Zarit says. Unfortunately, some groups are more helpful than others. "A good group is where people talk about what they've tried and what works for them," he says. "A bad group is where people try to tell you what to do."
Caring for someone with Alzheimer's isn't instinctual, Schempp says. "Caregivers make a lot of mistakes," she says. For example, it takes a while to realize that rational arguments aren't much use. Instead of carefully explaining that it's no longer safe for a patient to cook, caregivers should cover up or remove the controls on the stove, she says. It's a learning process, and people learn faster if they can talk to someone who knows what they're going through.
Chris Woolston is a freelance health writer whose work has appeared in the Los Angeles Times and Reader's Digest.