Caring for the caregivers.

• Author: Fox-Grage, Wendy
• Position: Care of an elderly relative

Taking care of an elderly relative can be a full-time job. But most people acting as caregivers also have to go to work. Here's how states are trying to help.

Arabella Dorth has two demanding jobs: one as a paralegal with a San Francisco law firm, another taking care of her 86-year-old mother, who is in the advanced stages of Alzheimer's disease. For three years, Dorth commuted to her mother's home in San Diego. For the last five years, her mother has lived closer, first in a retirement community, then in a board and care home, now in a nursing home. Dorth spends easily 15 hours a week on tasks that range from doing her mother's laundry to paying her bills to consulting with nursing home personnel. As a result, Dorth's vacation and sick leave are eaten up, as is one day after work, a half-day on weekends and time on the phone during workdays. When asked what keeps her going, she replies, "It's wonderful to see her face light up when she sees me. She might not know who I am, but she knows I'm family." Single with no siblings, she relies on outside agencies like the state-supported Family Caregiver Alliance in California. By providing "drawers full of information on Alzheimer's disease and medications," as well as a support group, the program "has saved my life," she says.

Dorth's story is not uncommon. Contrary to the conventional wisdom that Americans today are too busy to care for their own, studies show that unpaid family and friends provide the bulk of long-term care.

Twenty-two million Americans - one in four households - are involved in caring for an older family member, friend or neighbor, according to a 1997 study by the National Alliance for Caregiving (NAC), a nonprofit partnership of organizations for the aging. And the number is expected to increase as people live longer and the baby boom generation ages. Roughly 13 percent of the U.S. population is 65 and older. The baby boomers - the 76 million Americans born between 1946 and 1964 - start turning 65 in 2011. By 2030, nearly one out of five Americans will be over 65.

Given the high cost of long-term care, particularly in nursing homes (averaging $46,000 a year), policymakers have a strong interest in encouraging informal, unpaid elder care arrangements at home and in the community. Although the lion's share of long-term care funds, primarily Medicaid, goes to institutions such as nursing homes, state legislatures have crafted strategies to support families who take care of their older relatives. These include respite programs, direct financial support, state-supported programs for caregivers, tax incentives and family leave policies.

Caring for the elderly is not a "one size fits all" situation. Where one family might need a tax break, another needs information and family care planning. Yet another may need the opportunity to get out of the house twice a week for a break or to run errands.

NO MAGIC BULLETS

Most state programs are small and apply to a narrow niche of low-income citizens who care for elderly relatives in their own homes. However, over the past 10 years, states have increasingly appropriated more money for home and community-based programs to assist families with loved ones who can no longer take care of themselves due to mental or physical disabilities. Also, a handful of states recently' have added elder care to their tax benefits that once applied only to child care.

A few states have crafted support programs that operate on state funds. California, New Jersey, Pennsylvania, Washington and Wisconsin have the most comprehensive, according to Kathleen Kelly, executive director of the San Francisco-based Family Caregiver...