Our nation spent November recognizing Veterans and Caregivers Month, but it’s never been clearer that our current system fails to fully advocate for all the heroes behind the battlelines — and I’m not just talking about our military force — but America’s 53 million informal caregivers who devote their lives to caring for family members and friends.
These numbers are modest — the demand for the difficult and unpaid job of caregiving will soon explode as baby boomers age. As of today, the Department of Veterans Affairs (VA) has led other government agencies by making significant investments and improvements in caregiving programs. But millions in our nation will be left behind and suffer if we do not create a comprehensive approach that touches all American caregivers.
I know firsthand the struggles of being a veteran and caregiver. In addition to my 27 years of military service, I took on the critical role of a caregiver in 2006 when my wonderful wife, herself a veteran, suffered a stroke. It suddenly became my duty to provide her with long-term care, while parenting our three children and providing the only source of income for our household. In being largely unprepared for this new role, my experience reflected that of the millions of caregivers who provide care for a loved one.
Former First Lady Rosalynn Carter, founder of the Rosalynn Carter Institute for Caregivers (RCI), says, “caregiving is hard, even on the good days.”
Caregivers of veterans are relatively fortunate. The VA Caregiver Support Program encompasses 88% of total federal support directed exclusively to caregivers. Civilian caregivers often lack comprehensive support when it’s needed the most.
In 2011, the VA launched several caregiver support programs, including the Program of General Caregiver Support Services (PGCSS) and Program of Comprehensive Assistance for Family Caregivers (PCAFC). Since these programs began, they’ve had a powerful impact on the 55,000 caregivers enrolled today — proving that caregiver support works, as participants report living happier, more balanced lives than those who have access to these services. On Oct. 1, the VA expanded the Program of Comprehensive Assistance for Family Caregivers to include eligible veterans of all eras. Since this announcement, the VA has received thousands of applications – demonstrating the continued need for caregiver support.
As part of our mission to understand and address the needs of the 53 million Americans now serving as informal caregivers, the Rosalynn Carter Institute launched a new partnership in June with the VA to support veterans and their caregivers. RCI also offers Operation Family Caregiver and Operation Caregiver Support which serve military and veteran caregivers through one-on-one coaching and peer support.
The programs offered by the VA can serve as a blueprint for the future of caregiver support from the federal government. The VA has provided a framework but cannot accommodate — nor is it the role of the VA to do so — civilian caregivers. Millions of Americans need this form of support now, and there are millions who will need it in the future. The VA’s efforts in this space have been transformative, but the lessons learned need to be applied in other government areas to thoroughly support all caregivers — both veteran and civilian.
The simple truth is almost everyone will become a caregiver at some point in their lifetime. Census data show that by 2030, more than 20% of the population will be age 65 or older, up from 13% of the population in that age bracket in 2012. As the population ages and strains systems of care, it is clear that a comprehensive effort is needed to empower all caregivers — including ways to build their skills and confidence in caregiving, mitigate the potential stress and strain of caregiving, and raise public awareness of caregivers’ value to society.
The cost of caregiving for a loved one is high, with many informal caregivers reporting emotional, financial, and physical stress. Caregivers often forego rest and self-care as they manage working while providing care to a loved one. RCI’s recent study shows that the biggest challenge reported by caregivers who are employed full-time is the emotional stress of balancing their job and full-time employment. These costs have long existed, but they’ve been exacerbated by the COVID-19 pandemic and healthcare workforce shortage, which have caused many to rely on a family members or friend for care in the absence of formal support.
The first step in a national caregiving strategy is to establish the Office of the Caregiver at the cabinet level. The Office of the Caregiver has the potential to coordinate the adoption of successful programs and policies, like those established by the VA, across the federal government.
The VA has made great strides in improving the lives of veterans and their caregivers, but these efforts can’t fix our strained caregiver system alone. Currently, most caregivers struggle to provide support in difficult times because their needs aren’t met. Americans who require long-term care and the family members who provide this care need a unified approach from our government. The Office of the Caregiver would establish caregiving as an essential component of public health — making a difference for caregivers by providing them with the respect and honor they deserve.
Col. George Fredrick is a retired veteran of the United States Army and a former military caregiver who currently serves on the board of directors at the Rosalynn Carter Institute (RCI).