Caring for the Caregivers of TBI Patients

Shundra Johnson, left, gives encouragement to her husband Coast Guard Lt. Sancho Johnson during the Navy’s wounded warrior training camp for the 2015 DoD Warrior Games in Port Hueneme, Calif., May 29, 2015. Shundra is also her husband’s caregiver. (DoD News photo by EJ Hersom)

Many service members and veterans who experience traumatic brain injuries recover completely, but some endure chronic problems for years that require extended caregiving—usually from family members such as spouses or parents. Now, a first-of-a-kind tool developed by the Defense and Veterans Brain Injury Center could allow health care providers to assess the burdens on caregivers and develop treatments to meet their needs.

Working with federal and academic partners, DVBIC developed the Traumatic Brain Injury Caregiver Quality of Life measurement tool, known as TBI-CareQOL. The tool assesses how caregivers feel about loss of self-identity, or whether they feel trapped or anxious or stressed. The tool “will give researchers and clinicians some real insight into, and ability to measure impact, of TBI caregiving on the family member,” said Johanna Smith, a DVBIC program analyst.

The tool is currently in use as part of a congressionally-mandated study, known as the “15-year study”, following a group of caregivers of service members and veterans with TBI injuries. DVBIC supports this long-term project, which is taking place at the Walter Reed National Military Medical Center.

The new tool builds on the National Institutes of Health-funded “Patient-Reported Outcomes Measurement Information System,” known as PROMIS, which measures health-related quality of life indicators.

DVBIC’s new tool was shown to be a reliable and valid instrument for measuring quality of life. In the future, the tool could help identify caregivers who need rest from their responsibilities or who are at-risk for developing mental and physical health difficulties.

As Smith pointed out, “Caring for the caregiver allows for better care of our service members and veterans.”

DVBIC’s A Head for the Future initiative has chronicled some of the challenges caregivers face, and how they can avoid burn out. As the caregiver husband of a Coast Guard veteran who sustained a TBI, Jason Courneen said, “Every day is different. I remember my limits and take breaks as needed so that I can center myself and be the best husband, dad, and caregiver possible.” To get a break from caring for his wife Alexis, he exercises regularly by running, mountain biking, and skiing.

Lisa Colella, who takes care of her Marine veteran husband Rick, said, “I also take walks, set aside time to be social, schedule routine physical and mental health checkups, take classes available for caregivers, and exercise.”

These stories provide vivid examples of resilience when dealing with TBI. But more research is needed to ensure that all caregivers have needed support services.

Find additional resources on caregiver support on the DVBIC website.