traumatic brain injury, TBI, neurological

Caring for Someone With a Brain Injury and its Impact on Caregivers 

Traumatic brain injuries have the potential to up-end a person’s life in an instant, but what is often overlooked are the far-reaching effects of this devastating injury. Beyond drastically changing the survivor’s physical and mental wellbeing, a traumatic brain injury can also significantly affect those close to them, taking a particularly harsh toll on their caregivers as well. 

Each year, roughly 2.8 million people in the U.S. sustain a traumatic brain injury, and the most common causes are: 

  • Falls – 47 percent 
  • Struck By/Against – 15 percent 
  • Motor Vehicle-Traffic – 14 percent 
  • Assault – 9 percent 
  • Unknown/Other – 15 percent 

TBI’s can result in various cognitive, physical, personality and behavioral changes, including:   

  • Shortened attention span 
  • Memory problems 
  • Problem-solving difficulties and trouble following directions 
  • Poor judgment 
  • Partial or complete loss of reading and writing skills 
  • Language and speech problems 
  • Difficulty learning new things 
  • Muscle coordination problems, including swallowing problems 
  • Full or partial paralysis 
  • Changes in the senses 
  • Seizures 
  • Sleep problems 
  • Difficulty with social skills 
  • Inability to empathize with others 
  • Tendency to be more self-centered 
  • Inability to control emotions 
  • Increases in irritability and frustration/extreme mood swings 
  • Inappropriate and/or aggressive behavior 
  • Depression 

While traumatic brain injuries can alter someone’s life dramatically, the impact of brain injuries on caregivers can be profound and extensive. 

Caring for an individual with a mild, moderate or severe brain injury is often overwhelming, stressful and exhausting both physically and emotionally for the caregiver. 

Caregivers must make tricky, time-intensive decisions about the person’s physical and medical care 24/7 as well as manage their own health and wellbeing. The vast responsibilities carers must manage can often lead to high rates of anxiety and depression due to the conflicting demands of self-care and the needs of their loved one. 

Not only are caregivers at risk for stress, anxiety and depression, but they risk physical injury as well. 

According to the Centers for Disease Control, it is estimated that roughly 53 million people are currently caregivers in the United States. By 2030, it is estimated that 73 million people aged 65 and older will be caregivers for a friend or family member. 

Nationwide, one in four (25.4 percent) women are caregivers compared to one in five (18.9 percent) men. In California, nearly 20 percent of those aged 45 and older are currently caregivers to a friend or family member. 

Millions of older adults and people with disabilities could not maintain their independence without the help of unpaid caregivers, as this care would cost nearly $470 billion a year if purchased (CDC). 

Caregiving can be emotionally and physically demanding and can take a toll on one’s physical and mental wellbeing. Nationwide, over half (53 percent) of caregivers indicated that a decline in their health compromises their ability to provide care, and in California, 14.5 percent of caregivers aged 45 and older reported mental distress. 

Additionally, of all caregivers surveyed nationwide, 14.5 percent reported they felt mentally unhealthy 14 out of 30 days, 17.6 percent felt physically unhealthy 14 out of 30 days, and nearly 37 percent reported getting insufficient sleep, which is less than seven hours in a 24-hour period. 

Caregivers also must care for their loved ones while facing their own host of health challenges. 

40.7 percent of caregivers report having two or more chronic diseases, 33.0 percent of caregivers reported having a disability and 14.1 percent of caregivers reported coronary heart disease and/or stroke. 

Caregivers make the selfless act to care for another person’s health needs, and a majority of caregivers feel bound by duty to help their loved ones through times of need and illness, viewed as a way to show love and appreciation. 

According to a report Home Alone Revisited: Family Caregivers Providing Complex Care: 

  • 57% percent of caregivers report that they do not have a choice about performing clinical tasks, and that this lack of choice is self-imposed. 
  • 43 percent feel that these tasks are their personal responsibility because no one else can do it or because insurance will not pay for a professional caregiver. 
  • 12 percent report that they are pressured to perform these tasks by the care receiver. 
  • 8 percent report that they are pressured to perform these tasks by another family member. 

Not only do caregivers feel the physical and emotional challenges, but they are also faced with financial stress as well. 

According to the CDC, many caregivers are faced with lost wages and out-of-pocket costs, which can lead to financial difficulties. Nearly 2 in 10 employed caregivers had to stop working, while 4 in 10 had to reduce their working hours to care for a loved one. 

Caregivers sometimes pay out-of-pocket for caregiving services, meals, medical supplies, and other expenses. Almost 80% of caregivers report paying out-of-pocket for routine expenses for care recipients. The average annual out-of-pocket cost for caregivers is $7,200. 

While being a caregiver may seem daunting at times, it can be rewarding for both the caregiver and care recipient.  

It allows a care recipient to: 

  • Retain their quality of life and independence. 
  • Avoid living in a group setting 
  • Have less depression. 
  • Self-manage their chronic conditions better. 

Caregiving can also benefit caregivers by helping them: 

  • Increase their self-confidence and fulfillment from helping others. 
  • Start or add to social networks of friendships associated with caregiving. 
  • Feel needed and useful. 
  • Learn and develop new skills. 

Caregivers are usually so focused on ensuring their loved ones are taken care of, they often neglect their emotional and physical well-being which can be taxing over a long time. This often leaves caregivers stressed, drained and overwhelmed, leading them to neglect their own health in favor of caring for those that depend on them. 

While it is important for the caregiver to remain focused on providing for the needs of those they care for, it is equally important that they take the time to address their own physical well-being and mental health. 

Regularly taking short breaks, getting plenty of rest, eating healthy foods and engaging in personal hobbies strengthens caregivers far more than putting themselves aside to meet any demands. 

It is important for caregivers to have physical and emotional support from others around them in the form of friends and family, or other caregivers who know the challenges they face. 

You can support a caregiver by: 

  • Helping them with errands, chores and other tasks. 
  • Providing emotional support and social support and ensuring they do not feel socially isolated. 
  • Negotiating times to check in on them. 
  • Ensuring they manage their own mental and physical health care needs and eat healthy foods. 
  • Helping them create and manage a care plan for the person they care for. 
  • Encouraging them to seek mental health services if necessary. 
  • Ensuring they have time to exercise.   

It is important for caregivers who find themselves struggling emotionally and mentally to reach out for help from healthcare provider or community resources such as support groups so they can get guidance on managing stress and the emotional trauma associated with caring for a loved one with a traumatic brain injury. 

Neuropraxis has caregiver support modules and resources available to help those who are struggling with caregiver burden. 

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