Who Cares?

As an ever-growing percentage of Americans live to extreme old age, with a correspondingly large proportion surviving long enough to become frail, family caregivers play an increasingly pivotal role in their care. Previous studies have documented how widespread caregiving is, how intense, and how medically oriented. But these studies typically are snapshots, looking at a single point in time. A new study, “Family Caregivers of Older Adults, 1999-2015,” uses several national surveys to examine changes in caregiving over time.

The take home message of this comparison is that the job of caregiving has become more challenging as the care recipients have become sicker and more disabled. In 1999, 18 percent of care recipients needed help in three or four areas. By 2015, this had risen to 26 percent. Caregiving has become more intense and of longer duration, with 45 percent of caregivers providing help for over four years in 1999, compared to 64 percent in 2015. 

What this means is that for caregivers to do a good job, they need to be more medically sophisticated today. In the groundbreaking 2012 study, “Home Alone: Family Caregivers Providing Complex Chronic Care,” 46 percent of family caregivers were found to provide one or more types of fairly sophisticated medical care. This percentage has undoubtedly grown over time, just as all the other indicators of complexity have grown. But there is no reason to believe that today’s caregivers are any better equipped than their predecessors to manage chronic disease.

The consequences of this shift are profoundly under-appreciated. Increased demands on caregivers result in emotional, cognitive, and financial stress. At least as important, and almost never addressed, are the consequences to the care recipients. Unless their family caregivers develop greater medical knowledge and unless they learn to navigate the maze that is our current health care system, they will pay the price in the form of more trips to the emergency room, more hospital admissions, more tests, and more procedures. 

If today’s frail older people wish to avoid burdensome and often unnecessary and even ineffective medical treatment, and if our society wants to avoid the financial cost of such treatment, then it behooves us to provide better support for caregivers. Caregivers are the key. In the next few months, I will take a small step in that direction with the publication of my book for caregivers, tentatively titled “Taking Care.” This book, to be published by Johns Hopkins University Press, will provide caregivers with the knowledge they need as their relatives make their way to the office, the hospital, the skilled nursing facility. It will teach them enough medicine to help them manage the acute symptoms and chronic diseases they are likely to encounter. Above all, it will help them think through decisions based on their family member’s underlying health state and preferences for care. Stay tuned!