Caring for Older Adults—Caregivers

In the United States most long-term care of older adults continues to be provided by families as opposed to nursing homes, assisted living facilities, social service agencies, or government programs. This continuing commitment to family care of older adults in the community is remarkable in view of relatively recent changes in the fabric of American society. American family life has undergone significant changes in the past three decades. Most households require two incomes, and greater numbers of women have entered the workforce. Delayed marriage and childbearing has produced a "sandwich generation" of family caregivers that is simultaneously caring for two generations: their children and their parents. For the first time in history, adults may spend more years caring for a parent than for a child. Increased geographic separation of families further compounds the difficulties of family caregiving.

Another challenge is that the supply of caregivers is not keeping pace with the growth in the older population. The number of older adults for every one hundred adults of working age (from eighteen to sixty-four) is called the dependency ratio. Thomas M. McDevitt and Patricia M. Rowe of the U.S. Census Bureau note in The United States Population in International Context: 2000 (February 2002, http://www.census.gov/prod/2002pubs/c2kbr01-11.pdf) that in 2000 there were nineteen older adults for every one hundred working-age adults. When the youngest members of the baby boomer generation (those born between 1946 and 1964) begin approaching retirement age in 2025, there will be thirty older adults for every one hundred people of working age.

The National Public Radio program All Things Considered reported on May 2, 2007, that an increasing number of Americans are hiring home caregivers to assist with older relatives. Furthermore, Karen I. Fredriksen-Goldsen and Andrew E. Scharlach predict in Families and Work: New Directions in the Twenty-first Century (2001) that by 2020 one out of three people will have to provide care for an aging parent, with much of that care in the form of financial assistance.

FAMILY CAREGIVERS

According to the Family Caregiver Alliance (November 9, 2006, http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1807), a 2006 survey conducted by the health economist Peter Arno at the Montefiore Medical Center/Albert Einstein College of Medicine in New York confirmed that families continue to be the foundation of the U.S. long-term care system, with nearly 80% of long-term care provided in the home, rather than in institutions. The survey, which included a state-by-state analysis of the number of family caregivers, the hours of caregiving services, and their estimated market value, estimated the dollar value of care provided by family caregivers as $306 million, up 19% from 2002.

Not surprisingly, the Family Caregiver Alliance notes that the largest states and those with higher proportions of older adults topped the list in terms of the dollar value of family care provided. California was number one with care valued at more than $36 billion, followed by Texas at $22 billion, New York at $20 billion, Florida at $19 billion, and Pennsylvania at $13 billion.

Caregiving in the U.S.

In April 2004 the National Alliance for Caregiving and AARP conducted a national survey of 1,247 caregivers. Titled Caregiving in the U.S. (http://www.caregiving.org/data/04finalreport.pdf) and funded by the MetLife Foundation, the survey set out to determine the number and characteristics of caregivers in the United States and how caregiving affects their lives. When completed, the study estimated that in 2004, 44.4 million caregivers aged eighteen and older in 22.9 million households—21% of U.S. households—provided unpaid care to adult relatives. Caregivers provided an average of twenty-one hours of care per week—essentially making caregiving a part-time job, and 17% said they provided more than forty hours per week of care. Even though most caregivers reported little emotional stress, physical difficulty, or financial hardship, the 10% to 31% of caregivers who provided the most intense care, in terms of hours worked and the difficulty of caregiving tasks, felt that caregiving took a toll on their health and life.

This survey described the average caregiver as a forty-six-year-old woman with some college education who works and spends more than twenty hours per week caring for her mother. The average duration of caregiving is 4.3 years, but three out of ten caregivers provide care for more than five years, and caregivers aged fifty and older, who tend to care for mothers and grandmothers, are among those most likely to have provided care for ten years or more.

More than one-third (35%) of caregivers said they did not have enough time for themselves. Twenty-nine percent felt unable to manage emotional and physical stress, and the same percentage said they needed help balancing work and family responsibilities. Other caregiver needs and concerns include:

• Concern about keeping the people they care for safe (30%).
• Identifying activities they can share with the people they care for (27%).
• The need for help communicating with physicians and other health-care professionals (22%).
• The need for help making end-of-life decisions (20%).

The Economics of Caregiving

Most of the costs and responsibility for long-term care for older adults rest with family caregivers in the community. The shift toward increasing reliance on this informal system of care was spurred by changes in the health-care delivery financing system that resulted in shorter hospital stays along with the high cost of nursing home care, older adults' preference for home care over institutional care, and the shortage of workers in all long-term care settings. Taken together, these factors continue to increase the likelihood that frail, disabled, and ill older adults will be cared for by relatives in the community.

During the next few decades, as the number of older people needing assistance to remain independent increases dramatically, the burden and cost of providing care to an ill or disabled relative will affect almost every United States household. The U.S. Administration on Aging (AoA), in "Ensuring the Health and Wellness of Our Nation's Family Caregivers" (December 16, 2003, http://www.aoa.gov/prof/aoaprog/caregiver/careprof/TownHall/townhall_12_16_03.asp), calculates that if the services of family caregivers for older adults were replaced by paid home health-care staff, the cost would range from $45 billion to $94 billion per year.

THE CONTINUUM OF FORMAL SERVICES

As the older population increases, the segment of the population available to provide unpaid care, generally composed of family members, has decreased. Because the availability of caregivers has diminished, increasing numbers of older adults in need of assistance will have to rely on a combination of family caregiving and paid professional services or on professional services alone.

Home Health Care

Home health-care agencies provide a wide variety of services. Services range from helping with activities of daily living, such as bathing, light housekeeping, and meals, to skilled nursing care. Home health agencies employ registered nurses, licensed practical nurses, and nursing or home health aides to deliver the bulk of home care services. Other personnel involved in home health care include physical therapists, social workers, and speech-language pathologists.

Home health care grew faster in the early 1990s than any other segment of health services. Its growth may be attributable to the observation that in many cases, caring for patients at home is preferable to and more cost-effective than care provided in a hospital, nursing home, or some other residential facility. Figure 9.1 shows that the number of older adults receiving home health-care services peaked in 1996.

Before 2000 Medicare coverage for home health care was limited to patients immediately following discharge from the hospital. By 2000 Medicare covered beneficiaries' home health-care services with no requirement for prior hospitalization. There were also no limits to the number of professional visits or to the length of coverage. As long as the patient's condition warranted it, the following services were provided:

• Part-time or intermittent skilled nursing and home health aide services
• Speech-language pathology services
• Physical and occupational therapy
• Medical social services
• Medical supplies
• Durable medical equipment (with a 20% copayment)

Over time, the population receiving home care services has changed. As of 2007, much of home health care was associated with rehabilitation from critical illnesses, and fewer users were long-term patients with chronic (long-term) conditions. This changing pattern of use reflects a shift from longer-term care for chronic conditions to short-term, postacute care. Compared to post-acute care users, the long-term patients are older, more functionally disabled, more likely to be incontinent, and more expensive to serve.

In Health, United States, 2004 (2004, http://www.cdc.gov/nchs/data/hus/hus04.pdf), the Centers for Disease Control and Prevention reports that in 2000, the most recent year for which data are available, over 1.3 million people received home health services. More women received home health services—61.8% were women and 35.1% were men. More than two-thirds of all home health-care recipients were aged sixty-five or older. Among 10,000 adults aged eighty-five and over, 694 used home health-care services in 2000.

Respite Care and Adult Day Care

Respite care enables caregivers to take much-needed breaks from the demands of caregiving. It offers relief for families who may be overwhelmed and exhausted by the demands of caregiving and may be neglecting their own needs for rest and relaxation.

Respite care takes many forms. In some cases the respite worker comes to the home to take care of the older adult so that the caregiver can take a few hours off for personal needs, relaxation, or rest. Inpatient respite care, which is offered by some nursing homes and board-and-care facilities, provides an alternative to in-home care. Respite care is also available for longer periods so that caregivers can recuperate from their own illnesses or even take vacations.

Adult day-care programs, freestanding or based in hospitals, provide structured daytime programs where older adults may receive the social, health, and recreational services they need to restore or maintain optimal functioning. Even though they are not specifically intended to provide respite for caregivers, adult day-care programs temporarily relieve families of the physical and emotional stress of caregiving.

Community Services

Besides home health-care services, many communities offer a variety of services to help older adults and their caregivers:

• Home care aides to assist with chores such as house-cleaning, grocery shopping, or laundry, as well as assistance with the activities of daily living.
• Repair services to help with basic home maintenance, as well as minor changes to make homes secure and safe, such as the installation of grab bars in bathrooms, special seats in the shower, or ramps for wheelchairs.
• Home-delivered meal programs offering nutritious meals to those who can no longer cook or shop for groceries.
• Companion and telephone reassurance services to keep in touch with older adults living alone (volunteers make regular visits or phone calls to check on and maintain contact with isolated older adults).
• Trained postal or utility workers to spot signs of trouble at the homes of older people.
• Personal Emergency Response Systems devices that allow older adults to summon help in emergencies (when the user pushes the button on the wearable device, it sends a message to a response center or police station).
• Senior centers offering recreation programs, social activities, educational programs, health screenings, and meals.
• Communities providing transportation to help older adults run errands, attend medical appointments, and make related trips (such services are often subsidized or free of charge).
• Adult day-care centers providing care for older adults who need supervised assistance (services may include health care, recreation, meals, rehabilitative therapy, and respite care).

Home and Community-Based Services

Home and community-based services refer to the entire array of supportive services that help older people live independently in their homes and communities. In 1981 federal law implemented the Medicaid Home and Community-Based Services (HCBS) waiver program. Before the passage of this legislation, Medicaid long-term care benefits were primarily limited to nursing homes. The HCBS legislation provided a vehicle for states, for the first time, to offer services not otherwise available through their Medicaid programs to serve people in their own homes and communities, preserving their independence and ties to family and friends at a cost no higher than that of institutional care. States have the flexibility to design HCBS waiver programs to meet the specific needs of defined groups.

Seven specific services may be provided under HCBS waivers: case management services, homemaker services, home health aide services, personal care services, adult day-care/health-care services, respite care services, and rehabilitation services. Other services may be provided at the request of the state if approved by the federal government. Services must be cost effective and necessary for the prevention of institutionalization. Services may be provided to older adults and people with disabilities, people with developmental disabilities or mental retardation, and people with physical or mental illness. States have flexibility in designing their waiver programs; this allows them to tailor their programs to the specific needs of the populations they want to serve.

The HCBS waiver program has experienced tremendous growth since its enactment in 1981. According to the Centers for Medicare and Medicaid Services (July 23, 2007, http://www.cms.hhs.gov/MedicaidStWaivProgDemoPGI/05_HCBSWaivers-Section1915(c).asp), in 2007 forty-eight states and the District of Columbia offered about 287 such programs.

The Aging Network

The Aging Network (2007, http://www.jan.wvu.edu/cgi-win/DisQuery.exe?004), which is funded by the Older Americans Act (OAA), serves 7 million older people and their caregivers through 29,000 service providers, 655 area agencies on aging, 233 tribal and native organizations, 56 state units on aging, 2 organizations that serve native Hawaiians, and thousands of volunteers. These organizations provide assistance and services to older individuals and their families in urban, suburban, and rural areas throughout the United States. The AoA is the federal headquarters for the network.

Even though all older Americans may receive services through the OAA, it targets vulnerable older populations—those older adults disadvantaged by social or health disparities.

SERVICES FUNDED BY THE OAA.

According to the AoA (2007, http://www.aoa.gov/about/over/over_mission_pf.asp), the OAA funds six core services:

• Supportive services enable communities to provide a range of programs including information and referral services, transportation to medical appointments and grocery and drug stores, and handyman, chore, and personal-care services.
• Nutrition services are more than simply the provision of food. The OAA Nutrition Program funds meals served in senior centers, nutrition education, health screenings, and counseling at senior centers. For many homebound older adults, the daily delivery of a hot meal enables them to remain in their home.
• Preventive and health promotion programs and services educate and enable older people to make healthy lifestyle choices. Every year illness and disability that result from chronic disease affect the quality of life for millions of older adults and their caregivers. Many chronic diseases can be prevented through healthy lifestyles, physical activity, appropriate diet and nutrition, smoking cessation, active and meaningful social engagement, and regular health screenings. The ultimate goal of the OAA health promotion and disease prevention services is to increase the quality and years of healthy life.
• The National Family Caregiver Support Program, initially funded in 2000, is a significant addition to the OAA. The program provides information to caregivers about available services; assistance to caregivers in gaining access to services; individual counseling; and organization of support groups and training to assist caregivers to make decisions and solve problems related to caregiving.
• Services that protect the rights of vulnerable older people are designed to empower older people and their family members to detect and prevent elder abuse and consumer fraud, as well as to enhance the physical, mental, emotional, and financial well-being of the older population. An example of these services is pension counseling to help older Americans access their pensions and make informed insurance and health-care choices, and long-term care ombudsman programs that serve to investigate and resolve complaints made by or for residents of nursing homes and board-and-care facilities. The AoA supports the training of thousands of paid and volunteer long-term care ombudsmen, insurance counselors, and other professionals who assist with reporting waste, fraud, and abuse in nursing homes and other settings, and senior Medicare patrol projects. The AoA awards grants to state units on aging, area agencies on aging, and community organizations to train senior volunteers so they can educate other older Americans about how to take a more active role in monitoring and understanding their health and health care.
• Services to Native Americans include nutrition and supportive services designed to meet the unique cultural and social traditions of tribal and native organizations and organizations serving native Hawaiians. Native American elders are among the most disadvantaged groups in the country.

Eldercare Locator

The AoA sponsors the Eldercare Locator Directory, a nationwide toll-free service that helps older adults and their caregivers find local services. The service is also available online (http://www.eldercare.gov) so that consumers can easily link to information and referral services. The Eldercare Locator program connects those who contact it to an information specialist with access to a database of more than forty-eight hundred entries.

Benefits Checkup

The National Council on Aging offers the online BenefitsCheckup program (http://www.benefitscheckup.org), which examines a database of more than fifteen hundred programs to determine older adults' eligibility for federal, state, and some local private and public benefits and programs. Users respond to a few confidential questions, and the database tells them which federal, state, and local programs they might be eligible for and how to apply. It is the first Internet-based service designed to help older Americans, their families, caregivers, and community organizations determine quickly and easily which benefits they qualify for and how to claim them.

There are about as many as seventy programs available to individuals per state. Among the programs included are those that help older adults find income support, prescription drug savings, government health programs, energy assistance, property tax relief, nutrition programs, in-home services, veteran's programs, and volunteer, educational, and training programs. Since 2001 the BenefitsCheckup program has helped millions find the benefits to which they are entitled.

Geriatric Care Managers Help Older Adults Age in Place

The increasing complexity of arranging care for older adults, especially when families live at a distance from the older adults in need of care, has given rise to a relatively new service profession: geriatric care management. Geriatric care managers have varied educational backgrounds and professional credentials. They may be gerontologists, nurses, social workers, or psychologists who specialize in issues related to aging and services for older adults. Care managers generally work with a formal or informal network of social workers, nurses, psychologists, elder law attorneys, advocates, and agencies that serve older adults.

Geriatric care managers work with families and increasingly with corporations wishing to assist employees to create flexible plans of care to meet the needs of older adults. They oversee home health staffing needs, monitor the quality of in-home services and equipment, and serve as liaisons for families at a distance from their older relatives. Fees range from $180 to $250 for an initial evaluation to approximately $60 to $75 per hour for follow-up, monitoring, and communicating with the family.

Hired homemakers/caregivers, transportation services, home modifications, and other services are also available. The total monthly cost of aging in place (older people remaining in their own home rather than relocating to assisted living facilities or other supportive housing) varies. An older adult who needs light housekeeping or companionship for three hours twice a week might spend around $300 a month, whereas one who needs twenty-four-hour-a-day supervision might pay $5,000 per month or more—much more if care from a certified home health aide or licensed vocational nurse is required.