The impact of acquiring a brain injury can be far-reaching; like ripples from a stone thrown in a pond. At the center there is the person who sustained the injury and towards the periphery you can include partners, friends, colleagues, family members, peers and the community at large. Often the family member takes on a new role that has been described as a caregiver.
Caregivers can be defined as those people who are in a position to provide support: spouses, siblings, parents, peers or friends, work colleagues and relatives. Often the caregiver does not seek to be the “carer”, but their concern for the injured individual places them in this role.
A brain injury is for life: a phrase often voiced when described the journey a person who sustains a brain injury will take. The caregiver will take a parallel, yet somewhat different path along this journey. The survivor of a brain injury typically progresses from acute (in-hospital), to post-acute, and then integrates back into the community. Acquired brain injury has been called the silent epidemic. The challenges that a caregiver faces can largely go unnoticed.
Caregiving is a multi-faceted. Caregivers provide support and assistance at a variety levels of activity, including self-care needs (eating and bathing), as well as activities of daily living (cooking and cleaning) and providing transport. Caregivers also ‘give’ emotional and psychological support to their loved ones as they progress through the rehabilitation process.
A recent paper by Turner and his colleagues explored the levels of depression, anxiety, stress and strain symptomatology experienced by caregivers of adults with traumatic brain injury during the phase of transition from hospital to home. What they found was that the rate of depressive symptoms in caregivers of people with TBI was greater than the general population, and strain was prevalent during the transition period. The authors’ recommendations include:
• Providing more specific caregiver support,
• Preparation is needed before patient discharge from hospital, and
• That adequate time spent in rehabilitation is beneficial for caregiver well-being
Most of us are caring and giving. When these two character traits get merged into ‘caregiver’ it takes on a whole new meaning. Caregiving can certainly have its rewards as we do indeed care for our loved ones. Caregiving can also have its challenges that can be exhausting, and for some leading to stress and even depression.
Caregivers of have such an integral role with and for persons with acquired brain injuries, it is important to consider the wellbeing of family caregivers. Brain injury needs a voice; absolutely it does, as it is a silent epidemic. When seeing and treating those with brain injuries be sure to also give a voice to those caregivers found among the ripples in that pond.
Turner, B., Fleiming, J., Parry, J., Vromans, M., Cornwell, P., Gordon, C. & Ownsworth, T. (2010). Caregivers of Adults With Traumatic Brain Injury: The Emotional Impact of Transition From Hospital to Home, Brain Impairment, 11(3), 281-292.