Military caregivers aid injured warriors, but little is known about their needs, study finds

Spouses, family members and others who provide informal care to U.S. military members after they return home from conflict often toil long hours with little support, putting them at risk for physical, emotional and financial harm, according to a new RAND Corporation report.

Researchers estimate there are between 275,000 and 1 million women and men who are providing care or have provided care for military members or veterans who served in Iraq or Afghanistan. Caregivers include spouses, children and parents of military members and veterans.

Despite the serious challenges faced by this group, there is no national strategy for supporting military caregivers, even as the nation prepares to end more than a decade of war fighting.

"Just as the nation's longest period of wartime has posed challenges for the military, the wars in Afghanistan and Iraq have created hardships on the family members and others who provide care to the wounded warriors once they return home," said Terri Tanielian, the study's lead author and a senior social research analyst at RAND, a nonprofit research organization. "Unfortunately, we know relatively little about this group of caregivers and there is no unified effort to make sure their needs are being met."

The RAND study, commissioned by the Elizabeth Dole Foundation, provides an initial assessment of the needs of military caregivers and identifies some broad areas where future work is needed.

"During my husband, Bob's, extended stay at Walter Reed Army Medical Center in 2010, I became a caregiver," said former U.S. Sen. Elizabeth Dole, whose husband—former U.S. Sen. Robert Dole—was injured during World War II. "I was there at the hospital just about every day for many months, where I was privileged to visit our wounded warriors and their family caregivers - spouses, mothers, fathers, and other loved ones.

"I was enormously inspired by the unwavering courage of these warriors and the deep commitment shown by their caregivers, who're facing tremendous challenges. In listening carefully to hundreds of caregivers, I am struck by a sense of urgency. We as a nation must do a far better job supporting these hidden heroes and RAND's critical work will guide us toward a national strategy for assisting the caregivers of today's generation of military members and veterans."

The work being done by RAND builds on a body of work on the health and welfare of service members and their families in relation to recent operations, including RAND's 2008 report "Invisible Wounds of War: Psychological and Cognitive Injuries, Their Consequences, and Services to Assist Recovery," which helped focus the nation's attention on the mental health needs of military members who served in the combat zones.

"Military caregivers are a cornerstone of the nation's ability to support its wounded warriors and it's essential we ensure that their needs are recognized and addressed," said RAND President and CEO Michael D. Rich.

Military caregivers tend to differ from civilian informal caregivers in several ways.

Military caregivers are younger and tend to live with the individual they care for, relative to civilian caregivers who tend to be older adults caring for elderly parents, often with age-associated illnesses like Alzheimer's disease. Military caregivers must navigate multiple systems of health care and benefit providers for individuals who often face complex injuries and illnesses. The typical military caregiver is a younger woman with dependent-age children.

Caregivers help provide a broad assortment of aid, assisting with the normal activities of daily life such as bathing, dressing and eating, serving as mental health counselors, advocating for better treatment, and even overseeing a family's legal and financial needs.

In addition to general physical strain, caregivers may experience a greater incidence of disease and other health problems than the general population. Prior research on the general caregiver population found that they are at greater risk for coronary heart disease, hypertension, compromised immune function and reduced sleep. It also found that they suffer disproportionately from mental health problems and experience emotional distress associated with caregiving. However, studies on how these conditions compare in the military caregiver population are lacking.

This preliminary RAND study included two focus groups of military caregivers organized to provide insight about the challenges they face. Many of the wounded veterans cared for by participants had experienced a traumatic brain injury, the signature wound of the Iraq and Afghanistan conflicts. These service members and veterans also suffered from multiple health conditions, including musculoskeletal problems, hearing loss, respiratory problems and PTSD.

Many members of the focus groups reported having insufficient time or energy to devote to parenting and feared those circumstances would have negative consequences for their children.

In a 2010 survey of military caregivers done by the National Alliance for Caregiving, more than two-thirds of caregivers reported devoting more than 20 hours per week toward providing care. More than 20 percent reported providing more than 80 hours of care per week.

Military caregivers must navigate a bewildering maze of service providers that may have different eligibility requirements. Community-based efforts to serve the population are scattered and largely uncoordinated. Caregivers reported a need for training and assistance with tracking appointments and medication schedules.

New federal programs intended to help military caregivers have resulted from federal legislation approved in 2010, including expanded offerings of compensation, training, and respite care. But relatively few caregivers qualify for this aid and it is unclear whether the efforts will meet the dynamic and evolving needs of those who do qualify, according to the study.

RAND researchers will undertake a future study with the Dole Foundation that will provide a clearer understanding of the number and composition of military caregivers, as well as their needs, resources available to them and a detailed gap analysis to identify how caregivers' needs may not be met. The future effort will include actions that can be taken to strengthen support for military caregivers.