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Feature Article

Caring for the caregiver

The job of caring for severely injured, ill, or disabled Veterans on a daily basis is a demanding task. VA Secretary Eric K. Shinseki has referred to these caregivers as "our partners in Veteran health care."i

But who are these heroes, and what are the challenges they face? A study published electronically on Aug. 25, 2011, in the Journal of Head Trauma Rehabilitation, titled "The Invisible Side of War: Families Caring for US Service Members With Traumatic Brain Injuries and Polytrauma," ii looks at caregivers for injured Veterans of the wars in Iraq and Afghanistan in depth, describing the work they are required to do and the help they provide.

Joan M. Griffin, PhD, of the Minneapolis VA Health Care System and the University of Minnesota Medical School, the principal author of the study, told the New York Times recently that because of the relative youth of these seriously injured Veterans, caregivers are looking at a "long horizon of providing care." iii

She and her team surveyed 564 caregivers of Service members and Veterans who had had traumatic brain injuries and received inpatient rehabilitation care at one of VA's Polytrauma Rehabilitation Centers between 2001 and 2009 before being discharged. From the survey's results, the authors learned that 79 percent of caregivers were women, typically the Veteran's parent or spouse.

The team also learned that even as long as four years after the injury, 22 percent of the patients caregivers supported still required assistance with basic activities of daily living such as bathing, feeding, and toileting. An additional 48 percent needed help with higher-level tasks such as shopping, driving, and money management.

Nearly one-quarter of the caregivers who responded to the survey reported that they were providing more than 40 hours of care every week—the equivalent of a full-time job—and another 20 percent said that they provided 5 to 40 hours of care. Of the Veterans who needed help with basic activities, half of their caregivers provided care for more than 80 hours a week.

Nearly 60 percent of caregivers were solely responsible for the caregiving the Veteran received. Most provided other kinds of help to Veterans, including managing emotions and navigating health and legal systems.

Half of the caregivers surveyed felt that they did not have a choice in whether or not to provide care. So while some felt honored and privileged to be providing care to an injured Veteran, others "felt stuck," Griffin told the Times.

VA has done a considerable amount to support family members who have assumed the role of caregiver to seriously injured or ill Veterans of all ages. The Department's Caregiver Support Line, (855)260-3274, tells caregivers about the assistance VA makes available, helps them access VA's services, and connects them with Caregiver Support Coordinators at nearby VA medical centers. Those who answer the phone are also trained just to listen supportively, if that's what the caregiver needs.

Under the "Caregivers and Veterans Omnibus Health Services Act of 2010," VA has been authorized to provide new services to the family caregivers of seriously ill Veterans who were injured or became ill in the line of duty after Sept. 11, 2011.

VA is now accepting applications for those services, which include a monthly stipend; travel expenses including lodging and per diem costs when caregivers accompany Veterans who are undergoing care; access to health care insurance; mental health services and counseling; comprehensive training in caregiving provided by Easter Seals; and respite care. According to the Times article, VA estimates that 3,000 families will benefit from the new caregiver program.

Veterans of all ages and caregivers may also be eligible for other VA programs including in-home and community based care; respite care; family support services including counseling, spiritual, and pastoral care; caregiver education and training programs; financial assistance for home modification to improve access and mobility; transportation assistance for some Veterans to get to and from medical appointments; and other benefits.

At the time the study was conducted, VA had four Polytrauma Rehabilitation Centers to serve Veterans and Service Members with injuries to more than one physical region or organ system resulting in significant physical, cognitive, psychological or psychosocial impairments and functional disability. These Centers are located in Richmond, Va.; Tampa, Fla.; Minneapolis, Minn.; and Palo Alto, Calif. A fifth Polytrauma Rehabilitation Center was opened in San Antonio, Tex., on Oct. 25, 2011.

All are part of VA's overall Polytrauma System of Care, which also includes four Polytrauma Transitional Rehabilitation Programs, 22 Polytrauma Network Sites, 83 Polytrauma Support Clinic Teams, and 45 Polytrauma Points of Contact. The system offers comprehensive, high-quality, and inter-disciplinary care to eligible Service Members and Veterans, each of whom receives an individually tailored rehabilitation plan to help him or her recover as much as possible.

To learn more about caregiver programs offered by VA, go to www.caregiver.va.gov. To learn more about VA's polytrauma system of care, visit www.polytrauma.va.gov.


i VA news release, "VA Celebrates National Family Caregiver Month," November 8, 2010. ii JM Griffin, G Friedemann-Sanchez, AC Jensen, BC Taylor, A Gravely, B Clothier, AB Simon, A Bangerter, T Picket, C Thors, S Ceperich, J Pool, M van Ryn. "The Invisible Side of War: Families Caring for US Service Members with Traumatic Brain Injuries and Polytrauma," J Head Trauma Rehabil, August 25, 2011 (epub ahead of print.) iii Catrin Einhorn, "Looking After the Soldier, Back Home and Damaged." The New York Times, September 27, 2011.

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