Hidden Heroes

America's Military Caregivers Serve in the Shadow of War — and of the Wounded

By Rajeev Ramchand, Terri Tanielian, and David M. Adamson

Vietnam veteran Jerry King holds onto his wife, Pauline, as she lifts him into his wheelchair.

AP Images/Stephen Lance Dennee

Vietnam veteran Jerry King, 63, holds onto his wife, Pauline, 59, as she lifts him into his wheelchair at their home in Anna, Illinois, in August 2013. Jerry was diagnosed with multiple sclerosis in 1978, and the disease was determined by the U.S. Department of Veterans Affairs to be service-connected.

There are roughly 22 million veterans in the United States, spanning eras of service from World War I to the recent conflicts in Iraq and Afghanistan. In the wake of the most recent conflicts, the number of veterans living with disabling injuries or illnesses has spiked sharply. About 3.5 million veterans today have a service-connected disability.

Many of these veterans rely on informal caregivers for daily, long-term support beyond what the formal treatment system provides. These caregivers — whom we term military caregivers — are typically spouses, parents, children, or other relatives, but some are also friends and neighbors. They help in many ways, assisting with tasks of daily living (such as feeding and walking), offering mental and emotional support, helping to navigate the health care system, and handling legal and financial matters. The care and assistance they provide helps the United States honor its commitment to veterans and saves the nation millions of dollars in long-term care costs. These caregivers also help ensure that the nation's veterans live longer, better-quality lives.

There are 5.5 million military caregivers in the United States. In the most comprehensive study ever done of these caregivers, we found that they fall into two distinct groups: those caring for veterans who served in the military before September 11, 2001, and those caring for veterans who served thereafter, many of whom were deployed to Afghanistan or Iraq. The two groups of caregivers differ in fundamental ways with respect to the burdens of care that they shoulder and the kinds of support that they need.

Dutiful Children, Aging Spouses

Of the 5.5 million military caregivers in the United States, about 80 percent of them — or 4.4 million people — are caring for veterans from the pre-9/11 era. In many respects, these caregivers resemble those whom we call civilian caregivers (those who care for nonveterans). Nearly 90 percent of the military caregivers from the pre-9/11 era are older than 30. Almost half are older than 55, and more than half are either retired or otherwise unemployed. Like most civilian caregivers, people in this group are typically a daughter or son caring for an aging parent or someone caring for a spouse.

The large majority of pre-9/11 caregivers can draw on a network of family and friends for support.

Pre-9/11 veterans receiving informal care generally fit the traditional profile of an elderly person whose needs are related to aging. A relatively small percentage of these care recipients — 30 percent — have disabilities specifically related to their military service. The most common problems reported by these individuals are chronic diseases (such as hypertension, cancer, or diabetes) or cognitive impairments, such as dementia. About three-fourths also report physical problems, such as back pain.

Most of the caregiving support provided to these pre-9/11 veterans involves assistance with the functional tasks of daily living often associated with elderly care, such as bathing, dressing, managing medications, or preparing meals. In providing this care, the large majority of pre-9/11 caregivers — 71 percent — can draw on a network of additional family and friends for support.

Pauline King poses with her husband, Jerry, a Vietnam War veteran

AP Images/Stephen Lance Dennee

Phyllis Cutler looks through photographs with her husband, Isadore, a World War II veteran

AP Images/Marshall Wolff, Metrowest Daily News

Chris Ott helps her son, John Thomas Doody, an Iraq War veteran

AP Images/Chris O'Meara

Three generations of military caregiving: Pauline King poses with her husband, Jerry, a Vietnam War veteran, in Anna, Illinois; Phyllis Cutler looks through photographs with her husband, Isadore, a World War II veteran, in Framingham, Massachusetts; and Chris Ott helps her son, John Thomas Doody, an Iraq War veteran, in Riverview, Florida. All three photos were taken during the summer of 2013.

Working Wives and Parents, Dedicated Buddies

In contrast, post-9/11 military caregivers present a very different profile. Most commonly, the caregiver is a young spouse or a parent taking care of a child, although a surprisingly large number of these caregivers are friends or neighbors — in some cases, a wartime buddy caring for a wounded comrade. Nearly 90 percent are 55 or younger, and more than a third are 30 or younger. In many cases, post-9/11 caregivers are juggling multiple responsibilities. Nearly two-thirds are employed, and 40 percent are raising at least one child.

The veterans whom this group cares for also differ. Most are young, and they are more likely than older veterans to suffer from the invisible wounds associated with combat experience. Nearly two-thirds have mental health or substance use disorders (including posttraumatic stress disorder, depression, and anxiety), and one-fifth have traumatic brain injuries; these impairments are roughly twice as prevalent as they are among pre-9/11 care recipients. Nearly 60 percent of post-9/11 care recipients say they are rated by the U.S. Department of Veterans Affairs (VA) as having a service-connected disability, again almost twice the rate of pre-9/11 veterans. Perhaps also because of their youth, however, the post-9/11 care recipients report slightly better physical functioning abilities than their pre-9/11 counterparts.

Because of this group's unique care needs, post-9/11 military caregivers typically spend less time with the traditional tasks of elderly caregiving (such as helping with bathing and dressing) but spend more time helping their loved one cope with stressful situations or avoid triggers of anxiety or antisocial behavior. And, unlike pre-9/11 caregivers, a majority lack a caregiving network that could support them.

For all military caregivers, the demands are substantial. Between 50 and 60 percent of military caregivers spend at least ten hours per week providing caregiver support, though pre-9/11 caregivers spend, on average, four hours less per week performing caregiving tasks. Of all caregivers, those who are spouses of the person for whom they are caring spend, on average, 14 hours more per week providing caregiver support.

Heavy Burdens, Hard to Bear

Caring for a loved one is often doubly demanding for those who are juggling care duties with family life and work. These caregivers pay a price for their devotion. All caregivers experience worse health, greater strains in family relationships, and more workplace problems than do non-caregivers. But post-9/11 military caregivers fare worst in these areas, and the problem is made even more serious for them because one-third lack health insurance or a regular source of medical care.

The impacts of caregiving on families are worse for post-9/11 military caregivers.

Caregivers in general face elevated risks for depression. About 20 percent of both civilian caregivers and pre-9/11 military caregivers are at risk for major depression, which is roughly double the rate for non-caregiving adults. But post-9/11 caregivers are four times more likely than non-caregivers to be at risk for major depression. Two defining features of post-9/11 caregiver activities — the added time spent caregiving and the help given to loved ones coping with stress and behavioral problems — contribute directly to depression.

The impacts of caregiving on families are also worse for post-9/11 military caregivers. Those who are caring for spouses report lower-quality marital relationships, which, combined with their young age, is likely to increase the risk of future divorce. This, in turn, will increase the need for "substitute" caregivers in the future. Similarly, society needs to plan for the 25 percent of post-9/11 caregivers who are parents of their veteran children and who, in a few years, will no longer be able to provide caregiving support — or who will need caregivers themselves.

As noted, many post-9/11 military caregivers are in the labor force. Caregiving also contributes to absenteeism from work. The lost wages from work, in addition to the costs incurred from providing medical care, lead to financial strains for these caregivers. Absenteeism imposes additional costs on their employers: The lost productivity of post-9/11 caregivers translates to an estimated $6 billion each year.

Support Services and Gaps

More than 100 programs offer services to U.S. military caregivers. The vast majority of these programs — 80 percent — are offered by private, nonprofit organizations. Most of the programs have been in existence for less than ten years. We identified four types of support services to assess their alignment with caregiver needs and to identify service gaps.

The first type of service helps caregivers provide better care. These services include patient advocacy or case management and structured education or training. Unfortunately, very few studies have evaluated the efficacy of these services, and those that have are often focused on caregivers to the elderly. Post-9/11 caregivers are more likely than other caregivers to use these services, but still only a quarter to a third of all post-9/11 caregivers reported using them in the past year.

Local congregations and other forms of local religious support constitute the resource used most often by caregivers.

Another type of service promotes caregiver health and well-being through various forms of support, including respite care, health and mental health care outside of traditional delivery channels, structured social support (such as peer support groups), and structured wellness activities (such as fitness classes or stress relief lessons). As noted, caregivers have consistently worse health outcomes than non-caregivers, and post-9/11 military caregivers consistently experience the worst outcomes of all. One-third of all post-9/11 military caregivers do not have health or mental health insurance coverage, and only four of the more than 100 programs focus specifically on this area (though 12 programs do offer some form of mental health care).

Army soldier Anthony Bucciarelli, left, hugs his high school friend and fellow soldier Sgt. Ray Kusch during his Happy Alive Day party at the Veterans of Foreign Wars hall.

AP Images/Kim Brent, The Monroe Evening News

Army soldier Anthony Bucciarelli, left, hugs his high school friend and fellow soldier Sgt. Ray Kusch during his "Happy Alive Day" party at the Veterans of Foreign Wars hall in Rockwood, Michigan, on July 7, 2013. Kusch stepped on an improvised explosive device while on a mission in Afghanistan and lost part of his left leg below the knee.

Despite their widespread lack of insurance coverage — and perhaps because they often lack a support network — post-9/11 caregivers are more likely than other caregivers to utilize mental health resources. Similarly, they more frequently use "helping hand" services (such as loans, donations, legal guidance, housing support, or transportation assistance), structured social support, and structured education and training on caregiving. Still, these types of services are used by less than a third of all post-9/11 caregivers.

The third type of service addresses a caregiver's family well-being. For instance, structured wellness activities may be geared toward strengthening family relationships, and religious activities may also be provided for spiritual counseling or support. Although there are few formal religious programs marketed for caregivers, local congregations and other forms of local religious support constitute the resource used most often by caregivers: 30 percent of pre-9/11 and 33 percent of post-9/11 caregivers utilize this form of support.

The fourth type of service addresses income loss. Only three stipend programs (primarily for post-9/11 caregivers or those who care for the elderly) exist to help offset the income loss from caregiving. The VA operates one of these programs, and the U.S. Department of Defense operates another; both are restricted exclusively to those who served post-9/11 and their caregivers. However, there are differences in the eligibility requirements for each program, and both may exclude some post-9/11 caregivers as well; for example, the VA program may exclude those who do not live with the care recipient.

Caring for the Caregivers

Promoting the long-term well-being of military caregivers will require coordinated efforts to address their needs and to fill support gaps. We offer several recommendations for a national strategy to ease the burden of caregiving and to support military caregivers and their loved ones. These recommendations span the following four areas:

Empower caregivers. National efforts are needed to help military caregivers serve capably in their roles as caregivers in addition to the other social roles they occupy (such as parents and employees). These efforts should include ways to build their skills and confidence in caregiving, mitigate their potential stress and strain from caregiving, and raise public awareness of their value in the rehabilitation and reintegration of veterans.

Create caregiver-friendly environments. From support services to workplaces to medical offices, acknowledging the special needs and status of military caregivers will help them play their roles more effectively, balance the potentially competing demands of caregiving with their work lives, and alleviate adverse health-related consequences associated with caregiving.

Fill gaps in programs. Programs relevant to the needs of military caregivers typically focus on the service member or veteran and only incidentally relate to the caregiver's role. We observed specific gaps in programs, such as eligibility restrictions against extended family members and friends and limited access to needed services, such as respite care, health and mental health care, health insurance coverage, and financial support. The eligibility issues and unmet programmatic needs should be addressed to ensure equitable access to services tailored to the caregivers.

Programs relevant to the needs of military caregivers typically focus on the service member or veteran and only incidentally relate to the caregiver's role.

Plan for the future. Ensuring the long-term well-being of caregivers and the programs that aim to support them may each require strategic planning. Meeting the evolving needs of military caregivers over time could require assisting them with financial and legal planning — the former to promote economic stability for caregivers and care recipients, the latter to ensure that suitable new caregivers be appointed if a primary caregiver is no longer available. Ensuring program sustainability in a changing fiscal environment could require the creation of formal partnerships across the existing service organizations in the private and nonprofit sectors.

Honoring America's veterans by ensuring their well-being remains a national priority. Military caregivers play a central role in helping to do this. But caregivers cannot go it alone. To the extent that their own well-being is compromised, caregivers could become unable to shoulder their burdens, leaving the responsibilities to be borne by other parts of society. Thus, ensuring the well-being of military caregivers is paramount to fulfilling the national promise to veterans. These hidden heroes need support as they serve those who have served their nation. square