Family Caregivers: The Invisible Army is Gaining Notice

Family caregivers have long labored in obscurity, often overlooked by policymakers and health care providers despite their critical role in helping loved ones live with independence. 

But their status is starting to change, and recent federal policy actions point to an encouraging trend: Increasingly, the invisible army of 48 million family caregivers is becoming recognized for its integral role in the health care landscape. 

In a noteworthy development, the Centers for Medicare & Medicaid Services (CMS) has proposed that Medicare reimburse health care providers for training family caregivers starting next year. CMS has also told hospitals that they are expected to treat family caregivers as active partners in the discharge process and inform them of a loved one’s health care needs after a hospital stay, such as for medications and treatments at home. And in July, CMS announced it will test new ways to provide care to people with dementia with a major focus on supporting the needs of unpaid family caregivers. 

These actions build directly on initiatives AARP has long advocated across the states through the CARE Act, which has been approved by 42 states, the District of Columbia, Puerto Rico, and the U.S. Virgin Islands. And they are occurring as the Department of Human Services and others implement a national strategy for caregivers that recommends 500 state and federal reforms to support their efforts.

Further, they align with the Biden Administration’s Executive Order earlier this year that would begin to increase support for caregivers who are federal and military employees and have HHS test a new model for dementia care. 

While these developments have not captured big headlines, and much more is needed, they underscore a pivotal moment: Health policymakers are finally starting to acknowledge the importance of family caregivers and consider them in rules that affect the well-being of their loved ones. In effect, family caregivers themselves have become health care providers. With little or no guidance, they may need to: