November is “National Family Caregivers Month.” Upwards of 41 million Americans provide care to someone else (beyond normal childrearing responsibilities), and in the vast majority of cases that someone is an older adult, typically a parent or a spouse. Just exactly what do these caregivers do and how much time do they spend doing it? Two reports published in the last few months and supported in part by AARP shed light on both these questions.
The most recent report is “Valuing the Invaluable: Charting a Path Forward.” Released this month (November, 2019), it is an update of the 2015 report of the same name. Based on the latest available data, it assesses the economic value of caregiving at $470 billion, a calculation that estimates the average amount of time spent at 16 hours per week and values that time at $13.81/hour. Now this may be the average wage for a home health aide, so perhaps it’s the relevant way to compute the “value” to the economy. But it’s surely not typical of what the average adult could earn if she (it’s usually although not always a she) were not serving as a caregiver and were engaged in her usual occupation—perhaps being a lawyer or a teacher—instead. Taking the $470 billion figure as a floor, we see that even this low-ball figure is more than the total amount Americans spend out of pocket on health care ($366 billion in 2017) and it’s three times as much as Medicaid spent on what it calls long term services and supports, which includes nursing home care as well as home health aides, adult day care, and other programs.
As to what unpaid caregivers actually do, the job encompasses a variety of activities, ranging from dealing with insurance claims to providing transportation to medical appointments, to providing hands on medical and nursing tasks. The latter is what the second report, "Home Alone Revisited," addresses.
"Home Alone Revisited: Family Caregivers Providing Complex Care" was published in April, 2019 and, like Valuing the Invaluable, it’s an update of an earlier report, this one from 2012. The study finds that just under half of all family caregivers provide “complex care:” medical or nursing services ("M/N tasks") that until recently were primarily if not exclusively in the domain of health professionals. These tasks range from managing medications to using sophisticated technology such as a respirator or dialysis.
Not only are many caregivers delivering complicated medical treatment, treatment that often allows older people to stay out of nursing homes, but they are finding their responsibilities burdensome. They often report the activities are also rewarding, but they worry about making mistakes and suffer from minimal guidance from nurses and doctors.
The report observes that while we have made some progress in helping caregivers do their critically important work—for example, the CARE Act, which requires hospitals to ask older patients to name a caregiver and then include that caregiver in discharge planning, has been enacted in 41 states—much remains to be done. The authors conclude that health care systems and professionals must offer “instruction and support” to caregivers providing complex care.
All this is well and good, but I think we need to emphasize not just the concrete actions that caregivers take—preparing special diets, providing wound care, and operating durable medical equipment—but also the medical decisions they are expected to make. A key component of what caregivers do that is scarcely touched on in either report involves day to day management of chronic disease (the exception is the emphasis in the new report on managing pain, which is identified as a particularly challenging area for caregivers), deciding whether to adjust the medication dose or the flow of oxygen, determining whether to take the older person to the doctor’s office or the hospital emergency department. These crucial decisions that caregivers make all the time affect whether the patient gets care at home or in the hospital, gets invasive care or supportive care, takes expensive, newly developed medication or cheap, tried and true drugs. Such decisions have the potential to shape the older individual’s quality of life—and the national expenditure on health care.
Caregivers should not engage in medical decision-making in isolation. They need the guidance of a health care professional. They need to spend time talking with the older adult and the physician about what overall goal of care makes sense at a particular point in time, given the patient’s general health and any limitations in daily functioning. If we want to support caregivers, and at the same time conceivably limit spiraling health care costs, we need to work with medical practices to teach them to partner with caregivers. Now that's a good activity for National Caregivers Month.