DHA’s TBI-focused Caregiver & Family Member Study continues at TBICoE (2024)

Genette Burges spends time with her husband Dan and children at the Warrior and Family Support Center at Joint Base San Antonio (Photo by: Lori Newman, Brooke Army Medical Center).

For the family members of some service members or veterans with traumatic brain injuries (TBI), caregiving is a 24/7 job. Those who live this daily life of caring for others are celebrated today with National Caregivers Day.

This may include assistance with daily activities, social interaction, and financial management. Without proper resources, these essential responsibilities can take a physical and psychological toll on the caregiver and the rest of their family.

In 2010, the Defense and Veterans Brain Injury Center, now known as the Traumatic Brain Injury Center of Excellence, launched the Caregiver and Family Member Study. This 15-Year Longitudinal TBI Study, led by TBICoE researchers at the National Intrepid Center of Excellence in Bethesda, Maryland is a congressionally mandated study that examines the effects of TBI incurred by service members. The specific focus of the study is on those who served in Operation Iraqi Freedom or Operation Enduring Freedom, and how those effects impact family members.

The Caregiver and Family Member Study aims to better understand the impact of the service member’s or veteran’s TBI on their family.

Now in its eleventh year, the Caregiver and Family Member Study has found that the time commitment and burden of caregiving is correlated with physical and psychological distress, poor sleep and disrupted family life. Frequently, caregivers balance their commitments toward their service member or veteran with childcare and other work duties, often receiving no help and having little time for themselves.

Caregivers also have unmet health care and care provision needs. These unmet needs can evolve to worse caregiver health and well-being.

However, the study also highlights that not all caregivers report negative outcomes. In fact, some report high levels of satisfaction and resilience and healthy family relationships.

Respite care, support groups, financial support, access to health care and training programs are critical for caregivers to manage the burdens of caregiving and to promote the recovery of the service member or veteran. Eligible caregivers can receive these services through the U.S. Department of Veteran Affairs Caregiver Programs.

Since launching the study, TBICoE has spearheaded several efforts to educate and support TBI caregivers, such as the development of the TBI Caregiver Quality of Life (TBI-CareQOL) Measurement System. TBICoE researchers at the NICoE plan to use measures from the TBI-CareQOL and larger Caregiver and Family Member Study as a screening tool to identify family members of NICoE patients at risk of poor health-related quality of life and in need of behavioral health care.

In addition, TBICoE’s “A Head for the Future” initiative has recorded testimonies emphasizing the need for robust TBI caregiver education and resources.

Brian O’Rourke, a retired Navy chief petty officer who sustained multiple TBIs, said, “My number one caretaker for the rest of my life is my wife, so for her to understand that I have TBI and how to help me deal with it is huge.”

TBICoE and NICoE staff anticipate that one of the overall impacts of the study is that caregivers are supported in their roles long term and their own health and welfare needs are attended to.

The TBICoE Caregiver and Family Member Study is ongoing and currently recruiting caregivers of service members and veterans with TBI and PTSD (TBI and PTSD caregivers), and parents and spouses who are not caregiving (non-caregiver military family members). Those interested in participating should contact the study leads at dha.caregiver.study@mail.mil or by phone at 855-821-1469.

To find additional resources for TBI caregivers and family members, visit the TBICoE website.