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Caring for Persons with Traumatic Brain Injury

By Nancy Chiaravalloti, PhD, Denise Krch, PhD, and Andrea Gagliano, MS TBI researchers at Kessler Foundation

According to the Centers for Disease Control, at least 5.3 million Americans need long-term or lifelong help with their activities of daily living as a result of traumatic brain injury (TBI). Their families are often their primary custodians. With caregiving comes considerable physical and emotional burdens and a decline in quality of life. Unfortunately, the voices of caregivers are often lost in the midst of caring for the individuals with TBI.

How big is the problem? Approximately 1.4 million TBIs occur each year with 80,000 to 90,000 new persons who need ongoing care. For 17% of them, their disabilities are moderate to severe. The impact is devastating to the individuals and their caregivers, who bear primary responsibility for assisting with health-related issues, transportation, financial management, and leisure activities. Caregivers live with a considerable amount of stress, which has been shown to adversely affect their mood, physical health, family relationships, marital satisfaction and longevity.  They experience social isolation, greater need for mental health services, and increased use of alcohol and other drugs. Moreover, caregiver stress is related to poorer outcomes for the individuals under their care. Despite clear evidence of the scope of this problem, caregivers of individuals with TBI remain a significantly underserved population.

How can we address caregiver needs? Research is essential to understanding what factors contribute to quality of life in caregivers of individuals with TBI. We are working on a study with researchers at the University of Michigan to identify specific challenges and stresses. We find that caregivers consistently voice certain challenges, namely, the negative impact of chronic stress on their physical, cognitive, and emotional health, feeling socially isolated, and feeling a general lack of support by the professional community at times they needed it most.

What’s next? To help caregivers overcome these challenges, we have begun implementing and testing a treatment aimed at improving their quality of life. The treatment focuses on supportive contact with professionals and other caregivers. While the study is still ongoing, preliminary findings are promising. Caregivers who complete the treatment report higher overall quality of life.

Research is making a difference in the lives of individuals with TBI and their caregivers. We are proud to contribute to efforts to meet the tremendous needs of caregivers. Supportive care for caregivers can help them overcome their challenges, improving their quality of life, and benefiting their loved ones living with the lifelong effects of brain injury.

Volunteers are the heart of our research. Contact Samantha Schmidt, Research Recruitment Specialist and find out why your participation in traumatic brain injury caregiver research is important.