BLOG: Recognize unique challenges of TBI caregivers
A moderate-to-severe traumatic brain injury affects not only the patient but their caregiver, whose sleep, physical health, social relationships and mood can be negatively affected by the strains of caring for a brain-injured individual.
Most of what we know about caregiver health-related quality of life comes from research in the fields of Alzheimer’s disease and cancer. There are many commonalities between care givers for traumatic brain injury (TBI) patients and other types of caregiving, such as feeling overwhelmed, isolated or anxious.
However, there are also challenges unique to taking care of a person with TBI. Unlike Alzheimer’s, the injury is sudden and traumatic, and the trajectory of recovery is quite different. Typically, a person with TBI will have an initial period of rehabilitation progress but may eventually have to adjust to a new baseline, with no or minimal improvements expected thereafter. Families are often ill prepared for these changes in a previously healthy loved one.
My colleagues and I developed the TBI-CareQOL Measurement System, a validated tool that helps us better understand how caring for a person with TBI can affect caregivers’ quality of life. It can also be used to quantify the impact of interventions designed to assist caregivers and to compare outcomes across different studies. We have used it extensively to evaluate caregivers of persons with both military and civilian TBI.
There are some interesting differences between these two populations. Military TBIs are more often due to combat or blast injuries and more often coupled with post-traumatic stress disorder (PTSD). Caregivers in these situations can become hypervigilant, devoting a great deal of energy to watchful monitoring and attempts to control environmental triggers, such as loud noises. Military caregivers may also engage in more emotional suppression — trying to put on a brave face for others — as an aspect of military culture. And they are often young spouses rather than parents, which creates different relationship strains from caregiving.
A short version of the TBI-CareQOL can be filled out and scored by hand and is available free of charge for anyone to use (www.tbicareqol.com). A more advanced, computerized version that uses smart testing (adapting questions based on the answers already given) is available through a number of academic and research services. We are currently using these measures to evaluate the impact of a just-in-time adaptive intervention delivered via a caregiver-focused smart phone app. Ideally, a wide range of clinicians and researchers will use the TBI-CareQOL as a screening test to identify caregivers who need support.
Neuro-optometrists and other eye care providers don’t have to start formally screening caregivers. But it is a good idea to keep in mind that your patient’s parent or spouse may be overwhelmed and stressed out. A simple acknowledgment of that can go a long way. Be aware that the caregiver may need to hear information multiple times or in different ways (ie, in writing rather than just verbally) to absorb it and be able to take advantage of services offered.
For anyone treating patients with TBI, the primary focus will always be on the injured person. However, it is important to recognize that caregivers are a critical part of the rehabilitation team. A few minutes of attention to the caregiver’s stress level and quality of life can help your patient recover faster and more fully.
Special Issue: Caregivers of service members/veterans and civilians with traumatic brain injury. Rehabil Psychol. 2020;65(4).