The National Family Caregiver Support Program: Progress and Pitfalls

By Barbara Worthington

Family caregiving exacts a heavy toll. Although the National Family Caregiver Support Program is the first federal program to offer assistance, significant challenges remain in providing greater relief of the strain of caring for loved ones.

A local Area Agency on Aging, administered under the National Family Caregiver Support Program (NFCSP), provided a workable, if unconventional, solution for the dilemma faced by a farmer whose expansive acreage required him to be away from his home, sometimes for extended periods of time. As the primary caregiver for his wife, who was diagnosed with dementia, he expressed concern about leaving her alone as he attended to chores in the barn because she needed continual reassurance from him that everything was all right. Additionally, he needed to know that she was safe in their house and that she hadn’t wandered off alone.

The purchase of walkie-talkies offered the ideal solution. With funds provided by the NFCSP, the devices offered reassurance to both husband and wife. From the barn, he was able to remain in contact with her, assuring her that he was nearby and would be home soon. And he was also able to monitor her whereabouts, ensuring she wasn’t endangered by her own actions.

Innovative solutions to myriad needs of family caregivers nationwide have emerged as the NFCSP provides visibility for the plight of millions of Americans providing services to elder parents, relatives, and friends. The burgeoning population of elder Americans has highlighted the acute need for assistance to the huge segment of caregivers who struggle with problems large and small.

The types of support and services the program provides vary greatly. Family caregivers can benefit from receiving everything from incontinence supplies and nutrition supplements to microwave ovens and washing machines that make daily tasks and routines a little easier.

To provide support to those who remain instrumental in enabling the independence of care recipients, it became necessary some years ago to establish an effective network for delivery of health-related and associated services to older adults. This support, taking a variety of forms, allows older adults to remain in their homes and in their communities longer.

The prospects of long-term family caregiving impose substantial burdens and stress related to balancing caregiving obligations with the demands of managing daily living. Protracted caregiving can produce adverse effects on caregivers’ physical and psychological health. It can also adversely impact their ability to manage family and work-related situations.

Who are these caregivers? There’s no definitive description. They’re women and men. Caregivers can be full-time employees with extensive work-related responsibilities. They can be grandparents raising their own grandchildren. Both caregiver and care recipient may be older adults.

Regardless, their circumstances tie them together with a thread that tugs at their stamina, attitude, commitment, management ability, and resourcefulness. Unpaid family caregivers, comprising the backbone of long-term care in the United States, include some 22.4 million people, according to the U.S. Department of Health and Human Services’ Administration on Aging(AoA).

The growing numbers of aging Americans and the huge numbers of family caregivers involved in their long-term care prompted the emergence of the NFCSP in 2000.

Raising Awareness
The move toward some form of caregiver relief originated from the examination of results documented in research literature from several states that had developed comprehensive programs on family caregiving, according to Rick Greene, MSW, an AoA aging program specialist. “Caregiver advocacy groups made the issue prominent,” he says.

Congress ultimately provided relief for the caregiver population with the enactment of the Older Americans Act Amendments of 2000 that created the NFCSP. Congress initially appropriated $125 million for the program. Most funds are allocated to states through a mandated formula based on a proportionate share of the states’ populations over the age of 70.

Working together with local Area Agencies on Aging and faith- and community-service providers and tribes, states offer five direct services designed to address a variety of caregivers’ needs. Those services include the following:
            • information for caregivers about available services;
            • assistance to caregivers to gain access to support services;
            • individual counseling, organization of support groups and caregiver training;
            • respite care to provide caregivers with temporary relief from their responsibilities; and
            • supplemental services, on a limited basis, to complement care provided by caregivers.

The program limits eligible populations to family caregivers of adults aged 60 and older and grandparents and relative caregivers of children aged 18 and under. States must give priority consideration to those in greatest social and economic need and to older individuals providing care and support to persons with mental retardation and related developmental disabilities.

While Greene praises the program for making significant strides in addressing caregivers’ needs, limitations prevent its total effectiveness. Greene says that although estimates recently placed the number of caregivers at 44 million nationwide, “funding has been flat.” Most recently the program distributed $162 million across U.S. states and territories in accordance with the formula mandates, according to Greene. “Funding is always an issue,” he says, adding, “Many states are investing funds to supplement the federal funds.”

He recognizes the limitations on the segments of the populations served by the program eliminate a significant number of caregivers who fail to qualify. For example, multiple sclerosis sufferers in their 40s and 50s realize no support from the program despite their chronic conditions.

Another challenge for the program, Greene says, is the caregivers’ failure to self-identify, preventing them from accessing services that could ease their caregiving burdens in a number of ways. He says continually educating healthcare professionals and encouraging earlier intervention with family caregivers would streamline the process. He notes that many caregivers are not assessed effectively. Such evaluations, he contends, could enable caregivers to possibly be referred earlier for services.

Caregivers require assistance and training in transitioning from one healthcare setting to another. For example, circumstances change from a hospital setting to rehabilitation facilities to home. “We need to assess the caregiver’s ability to provide care and explain to them what’s expected of them,” he says.

On the positive side, however, Greene says the level of public awareness of caregivers and their need for support has been dramatically increased by coverage in newspapers and magazine articles, along with elevated focus on celebrity figures as caregivers. “There’s a need for a continual public awareness campaign,” he says.

Soaring Statistics
Research conducted by the AoA suggests that the physical and emotional demands on caregivers put them at greater risk of developing their own health problems. Their research shows that caregivers are at greater risk for contracting infectious diseases, such as colds and flu, and chronic diseases, such as heart problems, diabetes, and cancer. Additionally, depression is twice as common among caregivers compared to noncaregivers.

More than 50 million people provide care for a chronically ill, disabled, or aged family member or friend during any given year, according to Health and Human Services and the National Family Caregivers Association. Some 1.4 million children, ranging in age from 8 to 18, provide care for an adult relative; 72% care for a parent or grandparent, according to the National Alliance for Caregiving and the United Hospital Fund. Most are not the sole caregiver.

Thirty percent of family caregivers caring for elders are themselves aged 65 or older; another 15% are between the ages of 45 and 54, according to Health and Human Services. Seventeen percent of family caregivers provide 40 or more hours of care a week; 10% of employed family caregivers go from full-time to part-time jobs because of their caregiving responsibilities, according to the National Alliance for Caregiving.

Welcome Relief
The NFCSP emerged on the American scene not a moment too soon. The need for such a program became apparent as Americans’ longevity increased and many more people started to liver longer with chronic illnesses, according to Carol Levine, MA, director of the Families and Health Care Project for the United Hospital Fund of New York.

Our continually evolving healthcare system also contributed to increasing the number of family caregivers pressed into service, she says. Older adults who, years ago, might have been able to stay in the hospital to recuperate from debilitating conditions, are routinely discharged earlier and often sent home with a variety of needs requiring care.

“Our dysfunctional healthcare system makes it difficult to manage caregivers’ needs,” she says. And, women, the traditional caregivers, entered the workforce in record numbers, exerting more pressure on caregivers. “All social and economic factors were impinging on providing care for older people,” says Levine.

With the NFCSP, the most commonly accessed services are information and referral, according to Levine. The program “helps folks make contact with other agencies in the community, acts as a referral agent, and helps with benefits, respite, etc.,” she says.

In addition to more funding, Levine says the program needs “more coalition building among community agencies that supply services.” Additionally, Levine suggests, providing access to nonprofits’ services and exerting more efforts to unite agencies in their efforts would improve the program’s effectiveness.

Also important, Levine emphasizes, is the need to take a “new approach,” improving the program’s outreach to caregivers who are unaware of available services. “A lot of people still don’t know these things exist,” she says. Reaching people requires going into communities, churches, and doctors’ offices to identify caregivers and link them to support services.

And, Levine says, the program needs to be expanded to become more inclusive. “It needs to be extended to more and younger caregivers,” she says. “It’s important to understand that caregiving goes across the life span, from disabled children to the elders with Alzheimer’s disease.”

Other issues create a continuing challenge for the NFCSP, says Levine. The program needs to “stay in step with the changing population,” suggesting the need to improve cultural diversity, examining why some groups are successful in caregiving and some are not—and why the dichotomy occurs.

Another significant challenge lies in expending efforts to “keep people in the community as long as possible to delay nursing home,” says Levine. With some tweaking and additional funding, the NFCSP can be improved.

But for now, it’s a start. “It’s the only federal program with services specifically aimed at caregivers,” says Levine. “It puts family caregiving on the federal agenda in a way it never was before.”

Growing Concern
In 2007, AARP recalculated the economic value of caregiving to society in the United States.  The value of the services unpaid family caregivers provide is estimated at $350 billion per year, according to Gail Gibson Hunt, president and CEO of the National Alliance for Caregiving in Bethesda, Md. “That’s not an inconsequential amount of money,” she says. In fact, it’s more than the costs of Medicare and Medicaid combined.

Characterizing family caregiving as a large policy issue, Hunt says, “Congress is aware that baby boomers are aging without family caregivers providing long-term care.” Such a scenario requires people to go into nursing homes, according to Hunt. “Within six months, on average, they spend down all their resources,” she says. Then they go on the federal tab.

Though the NFCSP has “brought visibility to the issue at a national level,” Hunt says there’s more that can be done. Training and education have received little money from the program. To date, she says, that “has been dealt with poorly.” She says there is significant need for caregiver education to outline such topics as proper nutrition, ways to deal with patients’ wandering, how to give a bed bath, and other important subjects.

She believes another shortcoming is that although every area agency has some money for caregiving, most do “pretty much what they want with the money.” There’s no “actual evaluation or data collection regarding who is served or who is getting respite.” 

Hunt says it’s difficult to go back after the fact and collect or construct data. “There’s no accountability,” Hunt says. “Congress wants numbers, but they’re unavailable. We’ve been hamstrung by not having really good numbers.”

Donna Schempp, LCSW, program director for the Family Caregiver Alliance in San Francisco, acknowledges numerous beneficial aspects of the program but recognizes that some changes would undoubtedly improve it. “The program benefits everybody who’s a caregiver,” she says, adding that it covers a broad range of circumstances and doesn’t require “a specific diagnosis to get the care.”

However, challenges lie in establishing new eligibility requirements, according to Schempp. The fact that care receivers are required to be over age 60 precludes many caregivers who have a legitimate need for assistance, Schempp says. “There are still a lot of diseases that don’t fit that category,” she says.

There’s an ongoing need to target low-income people, whom she characterizes as “the people in most need”—specifically those “just above the Medicaid level.” She says, “The poverty guideline is not an appropriate guideline in deciding who should be targeted for the money.”

For Schempp, equity remains a significant issue related to the NFCSP. Distribution of funding “differs from city to city and from state to state,” she says.

Where area agencies’ funds are concerned, some agencies “don’t really know how to serve caregivers,” she says. “The client is the caregiver, not the care receiver. There are agencies where this still has not been resolved.”

Effective support of caregivers also requires keeping in touch, she says. A “check-in” model is important to implement with follow-ups at specific intervals, such as every six months, she says.

Such improvements require a “mind shift” and a shift of focus, according to Schempp. “It’s really a work in progress,” she says of the NFCSP. And, at least for now, it’s the only federal program that offers support and relief to caregivers.

— Barbara Worthington is editor of Aging Well.