Talking to doctors. Driving to appointments. Administering medication. Helping someone bathe and dress. Family caregivers—about 43 million of them in the United States—do all this and more.
This month is National Family Caregivers Month, a time to recognize the hard work performed by caregivers across the nation, typically for free. Although we refer to these caregivers as family caregivers to distinguish them from the professional health care workforce, in truth these individuals represent the vital front line of care—but are not always fully integrated into the formal health care team.
Recent shifts in health care practices—shorter hospital stays, increased complexity of disease management, and greater management of chronic illnesses at home—have left family caregivers increasingly responsible for medical tasks. By some reports (PDF), almost half of family caregivers performed at least one type of medical or nursing task such as wound care, pain treatment, incontinence care, and handling medical equipment. Many caregivers learn to perform these tasks on their own with little formal training.
Given family caregivers' central role in medical care, there are efforts underway to improve family caregiver integration into the health care team. For example, state level legislation referred to as the Caregiver Advise, Record, Enable (CARE) Act provides patients with the ability to record their family caregiver's information on hospital records and require hospitals to consult with caregivers about the timing for a patient to be discharged from the hospital, and provide instructions about medical tasks they will need to handle afterward.
While the CARE Act applies only to acute care settings, such as hospitals, other interventions strive to improve family caregiver integration in community settings. Families Caring for an Aging America, a recent report by the National Academies of Sciences, Engineering, and Medicine describes some of these efforts. Among their recommendations is one to “strengthen the training and capacity of healthcare and social service providers to recognize and to engage family caregivers.” But there are barriers to effective integration and engagement of family caregivers. We're performing research sponsored by Seniorlink, a tech-enabled health services company, to examine what it would take to overcome those barriers and improve caregiver integration.
National Family Caregivers month gives family members the recognition they deserve as caregivers. It is also time to recognize them for what they are: a critical part of a patient's health care team.
Esther Friedman is a sociologist and Patricia Tong is an economist at the nonprofit, nonpartisan RAND Corporation.
