Family Caregiver Guide: Welcome

Traumatic brain injury (TBI) is a major public health problem in the United States. In 2006, the Centers for Disease Control and Prevention reported that TBI is more prevalent than cases of multiple sclerosis, HIV/AIDS, and breast cancer combined. Due to the present conflicts in Iraq and Afghanistan, members of the United States Armed Forces are one of the largest populations at risk for TBI. Of the service members medically evacuated for battle-related injuries from Iraq and Afghanistan to Walter Reed Army Medical Center, 33 percent had traumatic brain injury (as of March 2009). Due to medical and technological advances, we have seen a decrease in mortality rates for those with severe TBI from the 50 percent range in the 1970s to the 30 percent range at this time. As a result, family members and loved ones like yourself are increasingly being recruited to enlist in the ranks of caregivers to assist in the journey toward the greatest level of recovery possible for your service member. This guide was written to support and empower you along this journey.

Individuals who sustain a TBI may experience short- and long-term effects, such as alterations in thinking, sensation, language, behavior, and emotions. Whether the TBI is mild, moderate, or severe, persistent symptoms can have a profound and persisting impact, not only on the injured survivor but also on those who function as caregivers. It is you, the caregiver, who must not only survive the immediate shock when a TBI occurs, but must also learn to support and aid the service member who experiences ongoing effects caused by this injury. A TBI can radically change the lives of the individuals who are closest to those who experience it.

In December 2006, Congress took action to support caregivers by passing the National Defense Authorization Act of 2007. Section 744 of this act mandated the development of “…coordinated, uniform, and consistent training curricula to be used in training family members in the provision of care and assistance to members and former members of the Armed Forces with traumatic brain injuries.” This curriculum, Traumatic Brain Injury: A Guide for Caregivers of Service Members and Veterans, is the product of this mandate.

The Defense and Veterans Brain Injury Center (DVBIC) received this Congressional mandate on 23 April 2007. DVBIC was tasked with providing programmatic and logistical support to develop the curriculum according to the Congressional mandate, ensure content accuracy, and implement and maintain the curriculum into the future. DVBIC was selected because of its nearly 20 years of service to active duty military, their beneficiaries, and veterans with traumatic brain injuries. We fulfill our mission through ongoing collaboration with military, Department of Veterans Affairs (VA), and civilian health partners, local communities, families, and individuals with TBI, utilizing best medical evidence to optimize care from the battlefield to the community.

Ms. Ellen Embrey, Acting Principal Deputy Assistant Secretary of Defense for Health Affairs, commented that, “We are absolutely committed to providing the best information found in sound science and based on medical evidence. We want the Traumatic Brain Injury Family Caregiver curriculum to be the authoritative source of information and support for family caregivers of service members with TBI. This is another step we are taking to ensure that those who protect our country and our freedoms are also protected.” Ms. Embrey also added that, “Information is a powerful tool. We must remain proactive in providing deployment-related health information to better safeguard our service members. Most people fear the unknown. Through accurate, timely information, we are able to ensure that our service members are better equipped to prepare for, cope with, and recover from the myriad health risks faced during deployments.”

This Guide was designed to empower you by offering a uniform source of information while instilling hope as you navigate life after TBI. We have made every effort to make this an accurate and informative tool that is user-friendly and based on the needs of real-life caregivers and their experiences. Our goal is not only to give you the information you need, but also to offer reassurance and guidance as you set forth on this journey. You have been thrust into a new reality where you are asked to be the voice, ears, and eyes of your wounded warrior. You must all-at-once act as an advocate, counselor, and nurse, all the while striving to maintain your role as mother, father, husband, wife, son, daughter, sister, brother, and/or friend. Those around you watch and marvel as you willingly confront this challenge with courage, integrity, and a defiant spirit.

I want to thank you, the caregiver, for your service to our country. We will always be indebted to you and your service member for your courage and sacrifice.

Col Michael S. Jaffee, MD
National Director
Defense and Veterans Brain Injury Center

See Module 1: Introduction to Traumatic Brain Injury

See Module 2: Understanding the Effects of TBI and What You Can Do to Help

See Module 3: Becoming a Family Caregiver for a Service Member/Veteran with TBI

See Module 4: Navigating Services and Benefits

Download a pdf of the full guide.