Researcher Carol Morgan expected to find a different picture when she looked at her data on family caregivers. "I had this image of a 73-year-old woman, beaten down, pathetic," says Morgan, president of Strategic Directions Group in St. Paul, Minnesota, a marketing and consulting firm that surveys Americans 40 and older. Instead, a very different portrait emerged: many of the people who care for ailing family members or friends are busy, capable individuals with financial resources and an upbeat outlook. "Pathetic" is not a word that fits the profile, Morgan says.
Until recently, public interest in who's looking after Mom and Dad was limited. The activity was seen largely as a private commitment-family members and friends offering an array of support ranging from housing to financial aid to home-cooked meals. But such attitudes have begun to change. Large numbers of working women (who still bear the brunt of these responsibilities), extended families that have become increasingly far-flung, and an increasing awareness of the difficulty and expense of caring for the elderly have all contributed to turning this into a very public issue.
Currently some 22 million households with a telephone nationwide have at least one person caring for a relative or friend, triple the number in 1988, according to the "Family Caregiving in the U.S." report released last year by the National Alliance for Caregiving and the American Association of Retired Persons (NAC/AARP). With the glut of boomers on track for retirement in the next decade, the numbers are set to explode again, and the impact is being felt at every level of society.
LEAVE EARLY, COME IN LATE Loss of employee time due to family-care responsibilities has turned caregiving into a front-and-center issue in the workplace. After all, the cost of this lost employee productivity for American businesses is "conservatively estimated" at $11.4 billion annually, according to a 1997 survey by the Metropolitan Life Insurance Company. This statistic is supported by the NAC/AARP report, which found that 49 percent of caregivers said their responsibilities forced them to make some adjustments to their daily work schedule. Those changes included going to work late, leaving early, or taking time off during the day, according to the survey.
Mindful of how family responsibilities have affected the way workers do their jobs, some employers have begun to include coverage for such duties in their corporate benefits packages. Businesses that address the needs of caretakers and their loved ones will find an expanding base of customers as the number of older Americans grows.
Information from the NAC/AARP survey offers a rich and detailed analysis of who is taking on the job of caregiver, and what exactly their jobs entail. Some are dutiful sons and daughters helping their aging but alert parents with their bills and grocery shopping several hours a week. Others are husbands or wives who spend nearly all their waking hours caring for a spouse with Alzheimer's disease.
Women are far more likely than men to care for others: they make up 73 percent of caregivers. Nearly two out of three caregivers, 64 percent, are employed, while 16 percent say they are retired and 20 percent say they are unemployed.
Race also makes a difference in the likelihood of being a caregiver. Asian and black households are more likely to include caregivers than Hispanic or white households, the survey found. A total of 31.7 percent of Asian households include a caregiver, while 29.4 percent of Black households, 26.8 percent of Hispanic households, and 24 percent of white households claim one.
Gail Hunt, executive director of the National Alliance for Caregiving, says the reasons for some racial differences emerged in focus groups held before and after the survey. For example, Hunt explains, "There was a strong sense in theblack community that 'we have always taken care of our own.' "
The income of caregivers also varies, the survey shows. The median household income for caregivers is $35,000 per year, with families earning $75,000 or more annually making up 10.9 percent, and families earning under $15,000, 14 percent of the total. But while many caregivers might not have high incomes, their consistent spending on related expenses suggests their potential clout as consumers. Survey respondents who kept track of their spending laid out an average of $171 per month-totaling about $1.5 billion-on everything from bed linens to aspirin to books about Alzheimer's disease.
NEVER TOO BUSY TO HELD OUT Carol Morgan's psychographic research suggests caregiving attracts take-charge, responsible, high-energy people. "It's like the old saying," Morgan notes. "If you want to get something done, go to a busy person." For her company's report, Morgan and her partner, Doran Levy, defined caregivers as people who provide help with such services as bill-paying and finances, assistance with medical matters and emotional support. Their data suggests that caregivers are realistic and capable of planning for the future. "When it comes to a choice between taking Dad to the urologist or going to the beach, [these people] would do what has to be done and feel all right about it," Morgan says.
Yet caregivers in the survey are not only motivated by wanting to "do the right thing." Some are thinking about their inheritance. Caregivers are more likely to be counting on an inheritance than noncaregivers, Morgan says, and they are also more likely to have purchased investments from a financial planner or a bank officer, and services from insurance agents. "The importance of this is that caregiving is linked for many with an inheritance," says Morgan. "If financial advisers are looking at those who inherit as a target for products and services, they should be looking at caregivers." Some companies already are. The marketing branch of Equitable Life Assurance Society in New York City, for example, now offers an investment seminar for baby boomers that focusses on caring for their aged parents.
Morgan and Levy also found that caregiving varies dramatically by region. Southerners are most likely to provide caregiving, with 40 percent of the population providing two or more caregiving services. Westerners were least likely to provide such services, with only 15 percent providing two or more services. One explanation for this regional difference is the far younger population of the West (19 percent of the Western population is 40 and over, compared to 35 percent of the South). Morgan said other reasons may have to do with the more stable, family-oriented population of the South, compared to the more transient, uprooted, individualistic "do your own thing" aspect of Western life. "Certainly, caring for an elderly relative could interfere with that goal," Morgan observes.
Morgan also found a surprising characteristic of caregivers in her study: they are a mobile group. While only 36 percent of noncaregivers had taken a vacation lasting 10 days or more in the previous year, 44 percent of caregivers providing two or more services to a friend or family member had taken such a trip.
THEY DESERVE A BREAK The image of on-the-go, active caregivers portrayed in Morgan's study contrasts with the one described in a 1996 study of 500 caregivers by the Chicago-based Alzheimer's Association. This probably stems from the tremendous amount of time needed to care for someone with Alzheimer's, a progressive, degenerative brain condition that leads to almost complete dependence on others. Caregivers of individuals with the disease spent an average of 69 to 100 hours per week providing care for their family member or friend, the study found. Three-quarters of caregivers in the survey said they were depressed, and half reported living with their ailing friend or family member, making theirs a round-the-clock job.
The demands on these caregivers are great, says Beth Smith-Boivin of the Alzheimer's Association. "Caring for someone with Alzheimer's disease is a 36-hour day . Because there are so many changes that happen with Alzheimer'ss disease-the wandering, the sleep-cycle problems-caregivers don't get the rest they need. People feel they can't leave for an hour."
The greatest need for most caregivers is rest, experts say, and many businesses have sprung up to offer nonmedical services, products and support. In addition, many nursing homes and assisted-living facilities have set aside a small number of beds where people with Alzheimer's and other problems can go for a couple of days while their caregivers get a break. The market for such services is great, given that an estimated 4 million American adults suffer from Alzheimer's. But such services will not be used extensively until respite is covered by public and private insurance, Smith-Boivin notes. Many people continue to pay for respite care out of their own savings, she says. "For fixed-income people that's a huge issue."
Adult day care is another increasingly common option, but relatively few caregivers know about this and other services that may be available for them, says Hunt of the National Alliance for Caregiving. They are in critical need of information and resources about what's going to happen over the course of an illness, what to expect, and what they can provide, Hunt says. "It's amazing the little amount of information that health care professionals typically share on those topics."
Some public agencies have reached out to educate caregivers. Gail Norton is an in-home trainer for the Area Agency on Aging of Broward County, Florida. Norton advises caregivers on how to make their homes safer and how to connect with programs such as Meals on Wheels. Norton also occasionally serves as an advocate on their behalf with physicians. She says that often caregivers are desperate by the time they or a neighbor call her office. "They need education. They need training. They're losing themselves in this and they're depressed."
The mobility of Americans presents particular challenges for caregivers. About 6 percent of the respondents in the Family Caregiving survey said they were long-distance caregivers. "There are special concerns these people have," says Hunt.
Many companies are taking advantage of the need to have someone near an elderly or ailing family member or friend to act as an informed advocate. One such program is Genesis ElderCare in Kennett Square, Pennsylvania, which markets its services specifically to caregivers with careers and families. "People always think seniors are the audience for these products, but they're not," says Sandy Hillman, a spokesperson for Genesis. "Seniors never think they need them." The company offers assessment services to evaluate what an older adult needs to live independently, as well as monthly care services. The assessment costs $225, and monthly care starts at $65 per month.
As the population ages, Hillman and others expect the need for their services to increase. "Right now the primary market is for children [of the elderly]," she says. "I think employers will become the next purchasers of these products."
Whether employer support increases or fails to materialize, there is no doubt that there will be a powerful need for care of the elderly in the future. Businesses that provide information, products, respite and support services for caregivers will find an expanding market.
Eighty-three-year-old Victor Guccione is coming to grips with his long-term health needs. When his wife died three years ago, he vowed to remain independent. He learned to cook and shop, renewed his driver's license and provided for himself as his wife once had. He wintered in Florida, kept his cholesterol down and enjoyed daily walks. All so he could stay in his New Rochelle, New York, home of 42 years.
But recently, Victor had a stroke. Now he's receiving inpatient therapy and he's enlisted his daughter Roseanne's help in his quest to resume life at home. Guccione knows he'll need assistance, particularly with household chores like cooking, laundry, driving and house cleaning.
Seniors who want to remain independent are a growing population. Patients obtain care in their homes, both because they prefer to and because they can afford to, thanks in large part to technology and financial planning. A 1996 survey by the American Association of Retired Persons (AARP) and a five-year research project in the late 1980s by Friends Life Care at Home, a "retirement community without walls" in Blue Bell, Pennsylvania, reveal a strong preference among the elderly to stay at home for as long as possible.
"Seniors don't want to be institutionalized because of the stigma, the notion that they are old and frail," says Leon Harper, senior program specialist for housing at AARP. "Seniors need services that allow them to remain independent and accept their aging process gradually. As the aging cohort increases so will the need for nonmedical home care."
Between 1965 and 1995, the population of Americans 65 and older increased 82 percent, peaking between 1980 and 1995, when this segment grew to 33.5 million people. By 2050, according to the U.S. Census Bureau, the elderly population will more than double. The most rapid population growth rates for this age bracket are expected to occur between the years 2010 and 2030, as the baby boom generation reaches age 65. The elderly population is projected to increase to 80 million people. By the year 2050, an estimated one in five Americans will be elderly.
The Administration on Aging (AOA) projects that by the year 2020 a total of 15.22 million people over 65 will be living alone and that 19.2 percent of them will be limited in their ability to perform activities of daily living (ADL). Moreover, the AOA study suggests that as the population ages, the elderlies' need for assistance with ADLs will further increase.
Victor Guccione's daughter contacted CareGuide, an Internet resource site for eldercare providers, to identify options for the transition. CareGuide provided Roseanne with referrals to non-medical home-care providers.
These providers assist the elderly in their own homes with fundamental and essential activities of daily life, such as light housekeeping, meal planning and preparation, transportation, and shopping assistance. Home-care workers also help their clients with personal care, including dressing, bathing and simple health-care tasks such as oral hygiene, grooming and assistance with self-administration of medications.
Statistics on outlays are sketchy, since spending data combines skilled nursing and nonmedical home care. A 1997 National Association for Home Care report notes that in 1995, the total cost of domestic personal health-care services totaled $878.8 billion. An estimated 4 percent, or $35.15 billion, went toward home health-care services alone. Almost half of that was paid for through Medicare dollars, about 25 percent through Medicaid, almost 4 percent by private insurance and 22.8 percent was paid out of pocket by consumers. Skilled nursing services were generally paid for with Medicare and Medicaid dollars, as was nonmedical home care provided in conjunction with skilled nursing services.
Nonmedical home care provided as a stand-alone service tends to come right out of consumers' pocketbooks and amounts to about $8 billion a year. Home-care-industry cost estimates were projected at $42 billion in 1997, a 20 percent or $7 billion increase from 1995 estimates. It is likely that nonmedical home-care expenditures are on the same pace, according to Jim Fowler, vice president of franchise development for Home Instead Senior Care, a nationwide nonmedical home-care provider. Fowler estimates that their average client spends approximately $10,000 a year on services.
A survey cosponsored by the National Council on Aging and the Pew Charitable Trust found that nearly 7 million Americans provide long-distance care (at least one hour away) to relatives and friends aged 55 and older. Caregivers cite personal-care assistance and companionship as two of their unmet needs. The survey predicts that the roughly 3.3 million baby boomers now providing long-distance care will more than double over the next 15 years.
"The nonmedical home-care market is, in part, taking over the informal caregiving role of the family," says Meredith Patterson, an eldercare consultant in Concord, Massachusetts, and a board director of the National Association of Professional Geriatric Care Managers. "With more and more children at a distance or living their own lives at 180 miles per hour, the industry settled right in. I won't be surprised if this trend continues."
This year, Nebraska-based Home Instead Senior Care was identified by Entrepreneur magazine as one of the fastest-growing franchises in the United States. It now operates 140 franchises in 33 states. SpecialCare, a provider in Kennett Square, Pennsylvania, presently controls 44 franchises and is expanding. Smaller providers are multiplying their sites and services.
As demand increases, the supply of nonmedical home care providers is being directed by state regulations. According to insiders, the industry will likely diversify, favoring players who are hooked into the political pipeline and understand reimbursement issues as local providers fall by the wayside.
They work mostly behind the scenes, in bedrooms and bathrooms and living rooms. But while home-health workers toil in small places, there is nothing small about the home-health industry.
Between 1989 and 1996, the number of home-health agencies nearly doubled, from 11,097 to 20,215, according to the National Association for Home Care. This increase has been accompanied by more spending on home-health services to provide care for everyone from elderly heart disease patients to children receiving intravenous medicine at home.
While there are no exact figures, the National Association for Home Care estimated in 1997 that annual spending on home care exceeded $42 billion. One reason precise figures are difficult to gather is because about one-fourth of all home-care dollars are out-of-pocket expenses. Such spending is not always reported or accounted for by statisticians.
The growth in the home-care industry suggests that home health care is worth considering by marketers of products of a range of products, from bed sheets to transportation services for home-health aides. The portrait of the home-care industry sketched by its national association is one of dynamic growth with continuing challenges. Private and not-for-profit agencies in the industry have long grappled with problems linked to low reimbursement rates for home-care services. The industry also continues to struggle with government efforts to restrict home-care benefits.
The home-care industry has grown substantially since 1965, when Medicare, the federal health program for older Americans, began paying for home-care services. That year, Medicare paid $46 million for home-care services. By 1997, Medicare coverage had ballooned to $20.5 billion, according to the National Association for Home Care.
Other government funding also pays for a large chunk of home-health bills. In 1995, about 25 percent, or one in four home-care dollars, was paid by Medicaid, the government insurance program for poor and some disabled Americans. About 23 percent of all home-care bills was paid out of pocket, while private insurance paid only about 4 percent of all bills.
Because the government plays such a large role in paying for home-care services, much of the industry depends on government rates for reimbursement. Typically these rates have been low, creating problems for the industry providers. For example, while the average cost of a home-care visit was $77 in 1997, Medicare's average benefit payment was $67 that year, according to the National Association for Home Care.
As the population ages, experts predict that the home- care industry will increase in size. One sign of this is that the federal Bureau of Labor Statistics has identified "home-health aide" as one of the jobs with the largest anticipated growth in the 1990s and early 2000s. The number of home-health aides employed is expected to increase about 138 percent between 1992 and 2005, from 347,000 to 827,000. As the number of aides increases, so too will the number of home-care workers in general. In 1997, the industry employed 666,000 people, including nurses, administrators, therapists and homemakers, according to the National Assocation for Home Care. While home-care workers are likely to continue to carry out their duties in small spaces , the future for the industry looks large.