New Solutions to an Age-Old Problem

Charities offer creative ways to help families of the elderly cope

Since 1986, the Hebrew Home for the Aged, in Riverdale, N.Y., has operated a day-care program for elderly people with Alzheimer’s disease and other ailments, providing them with physical therapy, discussion groups, meals, and recreational activities.

Two years ago, the charity added an innovative twist and began offering the program overnight. The goal: to give a much-needed break and an uninterrupted night’s sleep to the stressed-out family members who care for their elderly relatives. The elderly patients are picked up at their homes at 7 p.m. and delivered back to their doorsteps 12 hours later.

The overnight service, called Elderserve at Night, is just one of a growing number of programs that non-profit organizations have begun to offer to help the burgeoning ranks of Americans who must care for an elderly spouse, parent, or other close relative.

Some, like Elderserve at Night, focus on giving relief to those charged with taking care of elderly family members. Other programs are aimed at making the complex, ever-changing health-care system easier for families to negotiate. And some focus on helping those who care for the elderly make decisions on everything from living arrangements to financial and legal issues.

Like many of the emerging programs, however, Elderserve at Night is limited to those who can pay for the service — Elderserve costs $75 per night — or who qualify for government support, such as Medicaid.

Andrew Grant, director of foundation and corporate relations at the Hebrew Home for the Aged, says he is worried about the middle-class people who are struggling to care for elderly family members and friends — and he is about to seek grants so the charity can better serve such people. But he doesn’t expect to have an easy time winning foundation support to expand the program to all who need it.

In 1998, the most recent year for which figures are available, about $180-million — less than 2 percent of all grant dollars from the wealthiest foundations — went to programs that benefit the aged, according to the Foundation Center. What’s more, just a slim portion of that was earmarked for programs that support the people who care for the elderly.

A new report by the Grotta Foundation for Senior Care identified just 43 foundations that give a significant portion of their grant dollars to programs that help family members who take care of their elderly relatives.

“The bottom line is, it’s not a lot,” says Susan R. Friedman, executive director of the Grotta Foundation, a New Jersey grant maker. “There have always been a modest number of funders concerned with the welfare of the elderly, but their identified client has always been the older persons themselves.”

Indeed, many groups rely on fees and donations from individuals to finance programs that provide support for families who care for the elderly. Nevertheless, a few grant makers have recently begun to show more interest in programs that serve the people who care for the elderly. For example, an October conference on the topic held by Grantmakers in Aging drew representatives from 136 foundations, more than twice as many as usually attend the organization’s meetings.

In coming years, grant makers are likely to see an avalanche of requests for help in dealing with the care of the elderly. In 22 million American families, at least one member is providing regular care to someone aged 50 or older. That figure is expected to increase as the population continues to age and as more Americans live well into their 80’s and beyond. The number of people aged 65 and over has more than doubled since 1960, to more than 33 million. By 2030, older Americans will account for nearly a quarter of the U.S. population.

Typically, the people who care for older family members are middle-aged working women who are also raising children. Those providing the most intensive care are more likely to be elderly themselves — 65 or older — according to the National Alliance for Caregiving, a group of non-profit organizations and government agencies that assist those who care for the elderly.

In addition to keeping their loved ones clothed, fed, and safe — and helping them with activities that keep them socially stimulated — many caregivers are also increasingly responsible for administering medication (including chemotherapy), changing dressings, or performing other medical tasks that were once done in a hospital or doctor’s office.

A 1998 study by the United Hospital Fund, a New York charity, calculated that the care provided by families to their older members was worth $196-billion.

Yet, the majority of those who provide the care are not getting the support and services that they need to keep from burning out or becoming overwhelmed by their responsibilities, advocates say.

“Right now, millions of caregivers do it alone, do it out of their own pocket or with limited resources,” says Brian Duke, president of Children of Aging Parents, a charity that provides information to people who care for elderly family members.

Mr. Duke says his organization, which was founded 22 years ago, still struggles to raise money. Last year its budget was $150,000 — not enough to take on all that it wants to do, such as develop a sophisticated Web site, offer assistance to companies whose employees are dealing with the burdens of caring for older relatives, and hire professional counselors.

“There’s an increase in the number of people working toward the common good of helping caregivers, and with the proliferation of these initiatives, there’s more competition for the small pool of funds,” Mr. Duke says.

Recognizing that the competition is increasing, at least one major foundation has expanded its efforts to help people who provide care to the elderly.

The Robert Wood Johnson Foundation recently announced that it will put $50-million into a program called Faith in Action, which recruits volunteers from religious congregations to provide care and support to people who are homebound with chronic illness.

The program currently receives $28-million, but the increasing needs of the elderly population made the new infusion of funds necessary, says Paul Jellinek, vice president of the Robert Wood Johnson Foundation.

“The pressure to control health-care costs and get people out of institutionalized care means more ailing and elderly people are returning home, and they need care and support,” Mr. Jellinek says. “The burden on family caregivers has grown.”

Programs that involve religious congregations are getting attention from other foundations, too. In its recent report on caregiving, the Grotta Foundation highlighted what it considered to be the best approaches to supporting family members who care for aging relatives.

Among the efforts it cited was one operated by the Winter Park (Fla.) Foundation, which has developed a planning and program guide that clergy and congregation members can use to help educate people dealing with long-term care issues.

The foundation turned to religious groups for help after a study it commissioned determined that many older adults and their families seek out members of the clergy when faced with issues about care.

“That’s where you can reach adult children of aging parents,” says Cathy Lieblich, community-education manager for older-adult services at the foundation. “They might not come to an education class that we put on in our center, but they might go to one put on by their congregation.”

Among the other approaches that the Grotta Foundation and other experts on the elderly believe hold promise:

Tailoring services to minorities. Several years ago, the Los Angeles chapter of the Alzheimer’s Association realized that it was failing to reach Hispanics, who make up 36 percent of the residents of the metropolitan region.

Using $2.7-million in federal grants, as well as $350,000 in grants from two foundations, the group worked with several charities that serve Hispanics to open adult day-care centers, create Spanish-speaking support groups, and hire bilingual staff members to visit families at home. It also developed written materials and videotapes about the disease, as well as training materials, in Spanish.

The programs were so successful that the Hispanic charities have since taken responsibility for running and paying for them. Now the Alzheimer’s group is using a new $1.2-million federal grant to develop similar programs for blacks and Asians.

“Many service providers may say, ‘Well, we offer services, but they don’t use them,’” says Debra Cherry, associate executive director of the Alzheimer’s Association’s Los Angeles chapter. “What I would say is that if you offer culturally appropriate services, people will use them.”

Moving to Main Street. In addition to its Elderserve at Night program, the Hebrew Home for the Aged, in Riverdale, recently started a new program that it refers to as the Main Street approach, opening five information and outreach offices on busy streets in Manhattan and the New York suburbs.

The intent was to make the offices easily accessible by putting them in the same places where people shop for food or drop off their dry cleaning, says David Pomeranz, who oversees the Elderserve program.

“People can come in and sign up for house-cleaning services, or they can ask a question,” he says. “So many of these caregiving decisions are crisis-driven. That’s really not the time you want to make a huge decision in your life. These offices help people think about caregiving as they go about their ordinary lives.”

Advocacy. With a $50,000 grant from the Archstone Foundation, the Family Caregiver Alliance last year sponsored the first conference ever called for state legislators and other policy makers to discuss ways to get states to provide money to aid people who care for their elderly friends and relatives. The grant also paid for a report that the alliance issued, examining caregiver-support programs in 15 states.

Expanding Internet services. The Family Caregiver Alliance is using a $330,000 grant from the California Endowment to establish a Web site, called Link-to-Care, for clients of its resource centers. Users will receive passwords that will allow them to, among other things, pose questions to medical, legal, and social-service experts, and participate in online support groups.

While Link-to-Care will primarily serve California residents, a similar project being developed by the National Alliance for Caregiving will be available to anyone with access to the Internet. The project, financed by a $150,000 grant from the AXA Foundation (formerly the Equitable Foundation), will review booklets, articles, videos, and other publications on elder care, and make abstracts available on a Web site. It is scheduled to make its debut this summer.

In addition to using new communications tools like the Internet, some organizations are relying on traditional media to attract attention to the needs of those who care for the elderly.

In June, an anonymous donor provided $75,000 to help two independent film producers develop a public-television special on families dealing with long-term care issues. The project, which is budgeted at $4.1-million, would include a four-hour television program, as well as a three- to five-year effort that would enlist schools, libraries, hospitals, and non-profit groups to help educate the public.

There is one big hitch, says Harry Wiland, one of the producers: The project needs to raise another $1.25-million just to get a green light from the Public Broadcasting Service. Of the 200-plus foundations and corporations that the producers have approached for support, says Mr. Wiland, “there are just 25 who are still talking to us, and six that are possibilities.”

Mr. Wiland says he is particularly disappointed that he has been unable to attract interest from prosperous high-technology companies. He says part of the problem has been trying to convince decision makers — most of whom are young — that the topic is important. “The mentality is, You’re 30, you’re going to live forever,” he says.

“That’s the problem we’re trying to tackle. With caregiving, there needs to be foresight.”

Meg Sommerfeld contributed to this article.