The United States is all grown up, and the wear and tear is starting to show in all the wrong places. The baby boomers, the largest generation in American history, are aging out — by the year 2050, the population of American adults over the age of 65 is expected to double, making up a projected 20 percent of the population. Improvements in medicine and living standards have steadily increased life expectancy in the United States, presenting a unique problem: The very health care system that is responsible for higher life expectancies is unequipped to handle the burden of an aging population. While the demand for long-term care becomes greater and greater, the go-to caretakers have become those who are often the least prepared to handle the challenges of elder care: family members. As the United States grows old, it is the government’s turn to become the caretaker and provide resources for the aging.
Informal care has always been an essential part of the US health care system. Today, 39 percent of American adults — mostly between the ages of 30 and 64 — find themselves caring for a sick or elderly family member. These unpaid and usually untrained caregivers provide 84 percent of total long-term care hours to the elderly. Most are not qualified or equipped to provide geriatric care, especially when chronic illness is involved. Nevertheless, the role of informal care has been perceived as a complete substitute for professional care. Society views formal care as a necessity for patients with illnesses such as cancer, but for the elderly, family-based care is often glorified as a virtuous commitment, even though the task puts emotional and fiscal strain on the caregiver. Studies suggest that, despite largely considering their care to be important, as many as 84.6 percent of caregivers feel that the burden of their responsibilities is too great, and many report feeling unqualified or unable to provide adequate care for the individual whom they are responsible for. The failure to recognize the costs and difficulties of caring for the elderly masks the need for collaboration between formal and informal care. The first challenge in preparing an infrastructure that can adequately care for a growing elderly population is acknowledging the need for formal health care and destigmatizing professional involvement in the day-to-day well-being of older family members.
Elder care has broad economic ramifications: The total opportunity cost of taking time off from work in order to care for elderly family members is estimated at $522 billion annually. Moreover, 40 percent of individuals requiring long-term care live near the poverty line, so low-income families bear a disproportionate share of the burden and cost. Private home care costs range from $10 to $40 an hour, and the average cost of one year spent in a nursing home is $76,680. Given the current inadequate state of government funding for long-term care, the high cost of alternative options gives low-income families little choice but to bear the economic load and provide the care themselves.
Medicare provides limited coverage for professional in-home care, but it does not provide adequate support for long-term care. It fails to cover 24-hour in-home care, and it usually does not cover personal care (including bathing, dressing and bathroom assistance). Furthermore, Medicare does not underwrite stays in assisted living facilities and only covers the first 100 days of long-term care after a hospitalization. In fact, Medicare’s first official line of advice for those seeking home care is to “talk to your family to see if they can help with your care or help arrange for other care providers.” In this way, the program plays into the cultural status quo which dictates that informal care is an adequate, if not desirable, substitute for professional care.
Despite its shortcomings, public insurance has improved upon earlier systems in which families were solely responsible for elder care — previous programs didn’t provide for the limited in-home care that Medicare now covers. Important services now available include some in-home nursing services and in-home physical therapy. Additionally, some programs have improved upon Medicare’s system of long-term care. The Program of All-Inclusive Care for the Elderly (PACE), for example, allows Medicare recipients to receive in-home help by offering assistance in the form of meals, nursing and adult day primary care. In addition, PACE focuses on training familial caregivers and supporting them through social services. Rather than being the sole source of care, loved ones are used as a complement to formal care under the PACE model. But only 31 states currently implement this program, and even then the services are only offered on a small-scale basis.
Meanwhile, Medicaid coverage of long-term care — which often serves as a supplement for the low-income elderly population — still leaves much to be desired and varies significantly from state to state. Washington’s Medicaid program, for example, provides for two nursing visits daily, whereas Oklahoma’s provides for just 36 visits a year. Cash and Counseling, a Medicaid program that seeks to account for the financial strain put on caregivers, pays family members to provide care and offers them counseling, but only 15 states have implemented the program thus far. Although these programs are limited steps forward, they are not available to all, even in the states where they are implemented. In order to qualify for any of these programs, the elderly must be eligible for Medicaid in the first place, which excludes middle-class elders from its benefits. While the Affordable Care Act sought to expand the coverage of Medicaid, many states chose to bypass the expansion, and those that have implemented it have done so unequally. As a result, many people still struggle to finance long-term care options. Given the low income level of many individuals needing long-term care, equalizing and expanding reforms to Medicaid’s long-term care policies are all the more urgent.
The reliance on informal elder care carries specific implications for women in the workforce. Since women are typically paid less than men, the opportunity cost of female family members staying at home is often lower. Although societal expectations also play a role, this economic argument helps explain why the average caregiver is a middle-aged, married female. In total, the annual worth of informal care provided by women ranges from $148 billion to $188 billion. When women take time off of work to care for family members, they are more likely to earn lower wages and benefits upon returning to work. Even when women don’t leave their jobs, 33 percent of working women providing informal care reduce their work hours, while 29 percent pass up career-furthering opportunities. A lack of affordable professional care in the future would not only stymie women’s advancement in the workforce, but also cause substantial harm to companies — it costs businesses an estimated $3.3 billion annually to replace women who quit their jobs to act as caregivers.
One common argument for family care is that geriatric patients are widely considered safer in the home of a relative. But elder abuse is actually more likely to be committed by family members than by professionals: 89.3 percent of reported abuse “occurs in domestic settings,” according to the National Institute of Justice. This abuse, affecting 11 percent of the older population, takes on many forms, including financial exploitation, neglect and physical abuse. However, considering the difficulties of reporting elder abuse, the rates are likely even higher — for every reported case, it is estimated that five more go unreported. Elderly people with certain diseases are at an even higher risk of abuse: Almost 50 percent of those with dementia were found to have experienced mistreatment at the hands of their caregivers. Regardless of whether elder abuse is fundamentally a product of overburdened families, intentional mistreatment or unintentional neglect caused by a lack of expertise, it’s clear that more comprehensive fixes need to be implemented to prevent this problem.
As the US population continues to age, the financial and personal burdens of providing predominantly informal elder care will only increase. Because of this, it’s necessary for federal and state governments to take prompt action. To their credit, some states have recognized the intense struggle of informal long-term care and have begun taking steps in the right direction. In July 2013, Rhode Island became the third state to pass the Temporary Caregiver Insurance bill. The legislation guarantees four weeks of leave for employees at two-thirds of their normal pay in order to take care of loved ones who have fallen ill. Unfortunately, only a few states currently have a form of paid family leave. Efforts by Democrats to pass a national family leave insurance act have been unsuccessful so far, due to staunch resistance by pro-business conservatives. The Family and Medical Leave Act allows family members to take up to 12 weeks of unpaid leave — but without compensation, this initiative does little to help the financial strain put on caregivers. In a Republican-dominated Congress, those dynamics look unlikely to change anytime soon. But if Americans continue to rely primarily on informal eldercare, establishing paid family leave will be essential to financially protect the increasing number of people who need to take time off to care for their aging relatives.
An increase in spending on in-home care will be necessary to address the challenges millions of Americans face as they provide for a booming elderly population. Professional in-home care preserves the autonomy of the elderly and provides much needed relief for families without putting additional strain on the capacity of expensive nursing homes. Failing to enact reform threatens the sustainability of informal care. If these options are not expanded, the United States may reach a tipping point where families can no longer absorb the extra strain on the health care system. As more baby boomers retire, that tipping point will come soon. Without governmental preventative measures, this aging country will soon find itself on life support.
Art by Grace Sun