WASHINGTON, D.C.—Better battlefield lifesaving techniques—more advanced armor, quicker transfers from theater to hospitals—have resulted in more and more veterans surviving life-threatening injuries. Subsequently, this has resulted in an increase in those veterans who are greatly injured and in need of full-time care and support, even after they leave the hospital. That support frequently comes from family members who act as caregivers, making sacrifices themselves in terms of time and money, and overcoming the steep learning curve necessary to care for their veteran family member.

Legislation was introduced last month in both the House and Senate addressing some of the needs of these caregivers. The “Wounded Warrior Project Family Caregiver Act of 2009,” introduced by Rep Michael Michaud, D-ME, chair of the House VA Subcommittee on Health, would establish a family caregiver program for veterans seriously injured while on active duty or in training for Operation Enduring Freedom or Operation Iraqi Freedom. It would provide instruction, counseling, and training to family caregivers designated by the veteran. A separate bill introduced by Rep John Salzar, D-CO, would provide a training program specifically for family caregivers of veterans suffering from traumatic brain injury.

The goal of the legislation is to not only meet some of the training and resource needs of caregivers, but to spotlight a hitherto invisible corps of support personnel integral to veteran patients’ health.

The Cost of Being a Caregiver

“Family caregivers are the true back-bone of the US long-term care system, with more than 50 million people who provide informal caregiving for a chronically ill, disabled, or aged family member or friend in any given year,” explained Rep. Michaud at a subcommittee hearing on the issue last month. “Focusing on family caregivers of veterans, it is my understanding that the VA does not collect data on this population, and therefore, the number of family members who provide care for veterans is unknown.”

While the number of family caregivers providing support to veterans is unknown, the affect that giving such support has to the lives of family caregivers in general is. Studies of the general family caregiver population show an adverse financial and physical toll. Women family caregivers are more than twice as likely to live in poverty. And family caregivers report having a chronic health condition at twice the rate of non-caregiver counterparts. Also, those who provide 36 or more hours of weekly caregiving are more likely to experience symptoms of depression and anxiety than non-caregivers.

If the goal of VA is to provide the best possible care for veterans, than the health and welfare of family caregivers needs to be taken into account, RepMichaud said.

A study released in April 2009 that was requested by the Assistant Secretary of the Air Force for Manpower and Reserve Affairs looked at the economic impact on caregivers of seriously wounded servicemembers and veterans. The study found that caregivers of servicemembers generally provide at least 10 hours of care a week, and that acting as a caregiver had an impact on their employment, schooling, housing, and childcare. About three out of every four caregivers had quit or taken time off from either work or school. On average, a caregiver is needed for about 19 months. Over that time, the average caregiver’s losses in terms of income average over $60,000.

Unmet Needs

Economic support is sorely needed, but more money would mean little to the veteran if the family caregiver does not receive proper training and emotional support, explained Anna Frese, who testified before the subcommittee on behalf of the Wounded Warrior Project. “In our experience, certain fundamental needs must be met to sustain family caregiving. These include initial caregiver training and instruction on meeting the veteran’s personal care needs, and provision of basic support services. Those needed supports included: an ongoing source of training; information and assistance to meet routine, specialized, and emergency needs; access to counseling and mental health services; respite care; provision of needed medical care; and some modest level of economic support.”

She added, “[VA] has no systematic family caregiver program. It has mounted some pilot programs. But overall, our experience is that very little institutional attention is being paid to family caregivers even though they are a vital link in the veteran’s lifelong rehabilitation process.”

Those pilot projects range from a program to help family caregivers of Alzheimer’s patients in Memphis to videophone training for caregivers of stroke victims in Gainsville, FL, to a hotline to help caregivers in Dayton and Cincinnati identify and coordinate resources.

But, on the whole, access and information regarding family caregiver resources is variable, and there is no nationwide standardized training and support network, legislators were told. Also, VA is still developing the Web site where all of these various pilot projects and services directed at family caregivers would be listed.

Challenge of Younger Veterans

Another challenge that both caregivers and VA officials are finding themselves with is how to adapt to the newest generation of veterans who, though injured or disabled, are still young desiring of a more active lifestyle. “We have programs to provide care in the least restrictive settings that need to be age-appropriate and [personalized],” explained Madhulika Agarwal, MD, VA’s chief of patient care services at the hearing. “We’re looking for ways to adapt them so that they are more acceptable in meeting the expectations of this disabled veteran group. We are becoming much more conscious and aware of it when providing training [on] the needs of caregivers and what supports they can provide.”

The goal of VA, added Lucille Beck, PhD, VA’s chief of rehabilitation services, is to work with veterans and their caregivers to put them in an independent, least-restrictive environment that would allow them to pursue their recreational and vocational goals. “For that reason, some of the programs we have discussed—the residential rehabilitation programs, the adult day care programs—we are individualizing those programs and specializing them so they address our younger veterans,” Dr Beck explained. “Our younger veterans are very technology-savvy. They are very interested and concerned with sports and fitness and leisure-time activities. So we are adding these services. And we have dynamic family environments. We have younger veterans who are parents. So in addition to providing a supportive environment where we provide childcare, we are using the goals that those veterans have to be good parents, to be good spouses, and incorporating those elements of care into our rehabilitative environments.”