Personality & Traumatic Brain Injury (TBI): How to educate Patients and Family

Traumatic brain injuries present a myriad of challenges to patients and families. Navigating this new reality is intimidating, confusing and stressful to families already spread thin by the initial trauma. As rehab professionals, a large part of our responsibility is walking hand-in-hand with patients and families as they negotiate the – sometimes very different – life ahead of them.

Providing patient and family education is an integral component of our role, however even as professionals we are often not equipped to approach sensitive or difficult topics as strongly as we should be.

Read on for a guide to navigating education for patients, families and caregivers experiencing personality changes post-TBI.

What is a traumatic brain injury?

It may seem obvious – but the first step should be to ensure that your patient and their families have an understanding of what a traumatic brain injury is. The most common causes of traumatic brain injury include falls, head impacts, motor vehicle accidents, assaults, and sports injuries–in other words, all things that involve a forceful bump/blow/jolt to the head. Traumatic brain injuries can impact many things depending on the areas of the brain affected – in general, these things can or will include how the injured person moves, speaks, thinks, processes, understands and acts. There are penetrating and non-penetrating traumatic brain injuries. Penetrating traumatic brain injuries occur when an object has pierced through the skull and entered the brain tissue, and non-penetrating traumatic brain injuries occur when an external force causes the brain to move within the skull.

It is important to be mindful of utilizing layman terminology versus medical terminology when appropriate during patient and family education.  If handing out paper resources, ensure the reading level is at or below a seventh grade level difficulty to increase the likelihood your patient and family will be able to understand the information.

Know all of this already?  It might be time to take the next step to be a Certified Brain Injury Specialist

How would that impact personality?

Awesome question, and one your approach to education should address. There are areas of the brain at higher risk for sustaining injury from a traumatic brain injury – including the anterior temporal and frontal lobes, corpus callosum, brainstem, and limbic structures.

Injury to these areas then have the potential to result in changes to patient’s memory, alertness and arousal, fluency, sequencing, judgment and more. Emotional regulation, self-awareness and impulse control may also be impacted — potentially resulting in what feels like a significant personality change.

Changes in personality include what, exactly?

To get more granular, patients experiencing personality changes as a result of a traumatic brain injury may exhibit a number of behaviors that to their family would be alarming or challenging.  It is important to validate patient and family’s concerns regarding these changes — medical reasoning aside, it can just be plain scary to have to watch a loved one struggle through an injury and come out potentially behaving like a whole new person.

Personality changes post-TBI can include a number of things, again dependent on the patient, placement and severity of injury.  In general, it will be important to note that mental fatigue can exacerbate symptoms and should be monitored for TBI patients with any behavioral/personality-based symptoms.  

Some common behavioral symptoms include the following:

  • Poor emotional regulation presenting as high emotional lability and/or very severe emotional responses. Patients and families may understand this better as “severe mood swings” or “intense changes in mood.”  Alternatively, patients may have difficulty expressing emotions and demonstrate a flat affect.  Patients and families may better understand this as “feeling the emotions but having trouble showing it.”
  • Restlessness may present as constant fidgeting, pacing, swaying and other repetitive motor movements.  Patients and families may better understand this as simply feeling restless or anxious – like how one would twirl their hair or tap their feet – just amped up a little.
  • Decreased social awareness presenting as decreased inhibition during conversations, avoidance of others where one would previously seek or embrace social contact, inappropriate comments within social context or cultural norms. Patients and families may understand this as “having a hard time keeping up with conversations or social flow” and/or “hard time catching back up with cultural expectations.”
  • Decreased motivation to participate in activities and/or anhedonia may present as frequent refusals, “being difficult,” or seeming disinterested in general.  Starting new tasks or engaging in activities, even if beneficial to the patient, may be impacted by this.  Patients and families may better understand this as “having a hard time getting motivated to do hard or uncomfortable things.”
  • Decreased inhibition or impulse control may present as frequent interruptions in conversation, grabbing at task items or items within the environment, sexual comments and sexual advances.  This may better be explained to patients and families as “having a hard time connecting actions to consequences” and/or “having a hard time remembering to pause between a thought and an action.”

Addressing social skills post-acquired brain injury is hard without the proper tools.  So why do that? This tool is a game. changer.

Education for Management of Personality Changes

Patient, family and caregiver education should be approached from a unified team perspective.  As the rehab professional, avoid providing education in a manner that is inaccessible – that is, using language that is too difficult, words that aren’t common, concepts that are too abstract.  

This will present an additional and unnecessary barrier between your patient and their family in a time when family/caregiver support is most beneficial.  Find the level that works for your patient and their family and get on that level – you as the professional need to feel like a member of their team and not the leader of their team.

As difficult as these adjustments may be for the families impacted, it will be important that family is prepared to meet a difficult behavior with de-escalation and validation.  Meet extreme behaviors with validation – acknowledge how the patient feels and why the patient may be feeling that way, while simultaneously modeling the appropriate behavior.  

Encourage family and caregivers to not take potentially hurtful words or thoughts from the patient too personally as it will only foster resentment.  These hurtful behaviors may seem conscious and directed at a family member in particular but more than likely are just a result of the brain injury.  

Be prepared to discourage family and caregivers away from reminding the patient or holding the patient hostage to who they “used to be.”  These comparisons can be frustrating and non-progressive for both families and patients.

Understanding the ‘why’

When managing challenging personality changes and changes in behavior, it will be important for patients and families to collaborate in identifying antecedent and consequences.  

An antecedent is what occurs prior to the patient exhibiting an undesirable behavior or unpleasant response.  It may not always be clear what the antecedent is, however with close collaboration between you as the rehab professional and the family/caregivers, a pattern may emerge.  

For example, a pattern of behaviors noted by the collective care team may reveal the patient becomes aggressive and agitated directly following a busy meal experience.  When providing education on identifying and addressing antecedents, words like “trigger” or “cause” may be more effective. 

Consequences are what occurs directly after the problem behavior – within the minutes, hours and days.  It is so important to collaborate with your patient and the family to establish how behaviors will be addressed in the moment.  Ensure your education clarifies that consequences do not equate to punishment as this is a potential area of confusion for families.

Behavior plans and how to use them: Inpatient Rehab and Brain Injury

So What Next?  

Know that – this is difficult – but you got it!

Utilize the tools available to you as a rehab professional to make life post-traumatic brain injury as easy to navigate as possible.  Grab yourself a behavior plan, sit down with your patients and families and prepare to educate while you develop a plan of action.  Continuing education for rehab professionals in the world of brain injury is developing rapidly – sources including Brain Injury Association of America, National Institute of Neurological Disorders and Stroke, and of course ARC Seminars (wink) are essential for maintaining an updated plan of action.  You’ve got this!

Check out our short course on communication and behaviour interventions helpful during Brain Injury rehab, ‘Update your Care Plan: ABI!’

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