They are wives, husbands, mothers and fathers, a good neighbor checking in, a best friend helping out. They sacrifice their time, their jobs, even their health to provide a service worth billions of dollars to the United States, often with no recognition whatsoever.
They are caregivers to active or retired military service members—not paid professionals, but loved ones thrown into battle against panic attacks, traumatic brain injuries, or just the everyday bureaucracies of American health care.
RAND research has helped bring their stories to light in recent years—who they are, what they do, and above all, what they need to succeed. That research has revealed the enormous sacrifices that millions of military caregivers make every day, as well as the gaps in support programs meant to help them.
It has helped define military caregivers as public servants in their own right, America's “hidden heroes.”
An Untold Story of Profound Need
Elizabeth Dole spent most of 2010 at the hospital bedside of her husband, Bob, as he recovered from a long illness at Walter Reed National Military Medical Center. As she walked the halls, the former senator came to realize that a “quiet, untold story of profound need” was playing out behind every door—a caregiving crisis that had gone almost entirely unnoticed.
She asked RAND to investigate. By then, the United States had been fighting wars in Iraq and Afghanistan for the better part of a decade. Yet few studies had looked at the people caring for service members when they came home. The best data RAND could find suggested there might be 275,000 of them—or there could be well more than a million.
That was the starting point for what became the most comprehensive study of military caregivers ever undertaken. RAND researchers surveyed thousands of military households and interviewed dozens of individual caregivers in face-to-face focus groups. They worked through resource guides, websites, and word of mouth to identify every known support program available to caregivers and their care recipients.
1.1 million people provide support to veterans of the post–9/11 wars in Iraq and Afghanistan.
They concluded that 1.1 million people were providing support to veterans of the post–9/11 wars in Iraq and Afghanistan. Another 4.4 million people were caring for veterans of earlier eras. The value of that, if they were all professional caregivers, would approach $14 billion a year.
Those caring for older veterans looked in many ways like other caregivers in the civilian world. They were most likely to be older adult children helping a parent with the physical disabilities of age or illness, with well-established networks of support to help them.
The post–9/11 caregivers were much different.
Post–9/11 Caregivers Are Young and Have Less Support
They were most often spouses (33 percent), parents (25 percent), or unrelated friends and neighbors (23 percent); around 40 percent of them were men. More than one-third of them had not yet turned 31.
Most were employed, and they reported missing an average of 3.5 days of work every month because of their caregiving duties. Nearly half said they had no support network.
Nearly 40 percent met the clinical criteria for major depression.
The needs of their care recipients were different as well. Nearly two-thirds had some kind of mental-health disorder, such as post-traumatic stress disorder (PTSD), or were struggling with substance abuse. One of the most common tasks their caregivers performed was helping them cope with stressful situations or other triggers.
Yet all too often, the programs meant to help military caregivers had not adjusted to those new realities, the researchers found. Many were still focused on older veterans with physical illnesses such as dementia, not younger veterans of Iraq or Afghanistan haunted by depression or substance-use disorders. Other programs were only open to immediate family members of service members or veterans, not friends or neighbors.
Almost none of the programs provided financial support to caregivers, or helped connect them with health care, the researchers found. And only a handful provided respite care, to allow caregivers a much-needed break from their responsibilities.
The researchers saw even more cause for concern when they looked to the future. In little more than a decade, they estimated, significant numbers of caregiving parents will simply become too old to carry on their duties. Marriages will fail; friends and neighbors will move on. And many of the support programs that could help are run by relatively young nonprofits, with no guarantee their funding will last as long as the need.
Former Senator Dole described the report as a “clarion call.” At a White House press conference, she introduced a coalition of nonprofit groups, political leaders, and others who had committed to support and empower military caregivers.
Former Senator Elizabeth Dole described the RAND report as a “clarion call.”
The Elizabeth Dole Foundation has since partnered with Public Counsel and other legal groups to provide free legal and financial services to caregivers planning for the future. It has worked with the U.S. Chamber of Commerce Foundation to expand employment and workplace services for caregivers. And it has rallied hundreds of caregivers to lobby Congress and the states for greater access to support programs.
RAND's research has “been critical in shining a light on the number and characteristics of military and veteran caregivers,” senior behavioral scientist Terri Tanielian told the U.S. Senate's Special Committee on Aging earlier this year. But much more work remains.
Tanielian, the leader of RAND's “Hidden Heroes” research and, as the daughter of a veteran, a former caregiver herself, recently released a ten-point blueprint to further help military caregivers. It calls for more research into how well support programs are working, whether the demands of caregiving affect different people—such as children—differently, and how caregiving needs change over time.
“Watching her make sure he was OK, just seeing their spirit, was inspiring,” she says. “You see these caregivers, you meet them, and they're not a data point, not a statistic.
“I continue to be inspired by what they do on a day-to-day basis, the sacrifices they've made. And I continue to hear about the challenges they face. We can make their lives easier if we focus on improving programs and policies based on sound research.”