Care Is the Medicine

National Caregivers Month is fittingly about the here and now. It is about honoring the millions of care partners across the nation—paid and unpaid, formal and informal—who dedicate hours, days, nights, and weekends of their lives to those who need their care. They serve us in the present, in order that we might have a better future. But the contours of our present and our future depend in part upon our shared history. And caregiving in America has a unique history.

How Medicare Separated Caregiving from Healthcare

From its very inception and implementation in the mid-1960s, Medicare regulations differentiated "custodial care" from the strictly medical benefits that the original legislation was designed to cover. In fact, one of the chief architects of Medicare, Wilbur J. Cohen, recognized in a 1966 report on the program's first 100 days that recipients were likely to be frustrated and confused by this distinction, arguing that any misconceptions on the matter "must be corrected." Over half a century later, I am often met with incredulity when patients or family members realize that their health insurance ignores one of the most fundamental contributors to their well-being.

What "Custodial Care" Really Means for Families

"Custodial care" is the oddly euphemistic terminology for personal care. The custodial refers to those things we all must do in order to function in our daily lives: mobility, eating, basic hygiene, toileting, shopping, and managing our medications and our finances, and so on. Some of these, like our capacity to feed ourselves, are considered "core" activities of daily living, while others, like medication management, are more "complex" enterprises. But they are all "custodial." This is, of course, a dangerous misnomer. Ensuring proper nutrition, getting around, staying clean, and adhering to our prescribed medication regimen are quite unlike tidying up a room. Rather, the room wouldn't exist without them. They are not just contributors to health; they are conditions of its very possibility.

Because Medicare, across six decades, has excised custodial care from its books, caregiving has been seen as an exclusively "domestic" responsibility instead of, or in addition to, a healthcare benefit. Given our advantage of hindsight, it might be tempting to simply chalk up this neglect to Medicare's desire to control costs. The provision of services to those who need personal care has been, and will always be, an expensive endeavor. While this perspective provides some partial truth, however, it is not the whole story. Over the years, it has become increasingly clear that caregiving both improves health outcomes and saves money. In short, the science of caregiving shows that the "custodial" should not be differentiated from "medical care." Care matters so much that more often than not, it is more important than medicine.

The Evidence: Why Family Caregiving Improves Health Outcomes

Consider the following research findings:

• High caregiver burden confers an approximately 3-fold increased risk for the care receiver transitioning to a nursing home. Conversely, increasing support for caregivers has been found to decrease nursing home admissions.
• Family caregivers of those living with dementia often feel overwhelmed, leading to about a one-third increase in emergency department visits.
• Those with care needs that go unmet are significantly more likely to be hospitalized.
• Unpaid yet high-needs care provided to older adults toward the end of their lives results in a more than $12,000 per month loss to the economy.

Care, therefore, is good medicine, positively impacting both health and economic well-being. We cannot afford to persist in the distinction between the "custodial" and the "medical." This month (and in many months to come), we must advocate for caregivers to receive the support, training, and recognition that they deserve. To make caregiving a widely accessible human benefit would be a boon to care partners, care receivers, and our society at-large. It is time to leave history in the past, and bring care into our future.