Behavior – Help for Families and Caregivers by April Groff, PhD

Behavior after TBI challenges families and caregivers

TBI behavior challenges everybody

TBI behavior challenges everybody

Changes in behavior after a brain injury are common and particularly stressful for families and caregivers. “Why does he act that way? What can we do? She’s like a different person.” These are just a few comments repeatedly heard by clinicians when talking with families and caregivers. It’s not only the person with the brain injury who has changed. Families and caregivers now find they have to change their expectations about the survivor’s behavior. They also learn to change how they respond to these new and often frustrating and challenging behaviors that they see at home and out in the community.

Behavior and memory are connected

Someone with a brain injury may have short or long-term problems with memory. This means that learning new information can be very difficult, and the person may become confused about how to act. A person with a brain injury may also do or say something over and over—like repeating a word, question, or activity. In most cases, repetitive behavior isn’t harmful. But it can be incredibly annoying and difficult for families and caregivers, who will need much patience and understanding while trying to figure out how to respond.

Below are some tips that families and caregivers can use to prevent behavior difficulties associated with memory problems. There are also tips for responding to these behaviors.

Prevention strategies

  • Establish a structured environment and daily routine. They are essential to reduce behavioral problems related to memory. Having a written daily schedule that is similar from day to day can make it easier for your loved one to remember what is expected and what to do next.
  • Keep household objects in the same designated places. Use the same route to walk to a specific location.
  • Keep distractions to a minimum and focus on one task at a time.
  • Use a memory aid system specific to the person’s needs. This may require writing down key information on a calendar, in a memory notebook, or in a smart phone. It may involve using visual reminders, alarms, or labels.
  • Have the person wear an ID bracelet with brain injury status, address, and emergency phone numbers.

Tips for responding

  • If the person repeatedly asks a question, provide an answer. Repeat yourself. It’s easy to get frustrated or to feel like the person isn’t listening to you, but don’t take it personally. Remember that it is the brain injury causing the behavior, not the person.
  • Stay calm and be patient. Offer reassurance with a calm voice. Don’t argue or try to use logic to convince the person to behave differently.
  • Focus on the emotion, not the behavior. Rather than reacting to repetition, try to think about how the person is feeling and respond to the feeling.
  • Use memory aids. Refer to calendars, notebooks, smart phones, visual reminders, or other memory aids familiar to the person.
  • Engage the person in an activity. Provide structure and try to engage the person in a pleasant activity.
  • If the behavior isn’t harmful, try not to worry about it. Find ways to accept and work with it rather than trying to stop it or change it.

Agitation

A person with a brain injury may feel easily overwhelmed, which can lead to agitated behaviors. He may become restless, and pace, fidget, or move around. He may become unsettled or upset more easily than before or for reasons that aren’t readily apparent to families and caregivers.

Many factors can interfere with a person’s ability to think. A person with a brain injury has a lower threshold for interference, causing more sensitivity to anything that interferes with the natural ability to think and is more susceptible to cognitive overload. This often leads to agitation.

Below are some tips for preventing agitation, as well as tips for responses by families and caregivers.

Prevention strategies

  • Keep the environment calm. Avoid noise, glare, and background distractions, such as having the television on or being in the same room where others are having conversations. If home is hectic, identify a safe zone. This can be a quiet area where the person can go during loud or busy times. In the community, try to target outings for days or times likely to be less crowded and noisy. If you begin to notice that an environment is becoming overwhelming in any way, offer an alternative such as going to a quieter location.
  • Support the person’s physical comfort. Make sure the room is a comfortable temperature. Factors such as pain, temperature, hunger, or toileting demands can overwhelm a person and lead to agitation.
  • Support opportunities for the person to get regular physical exercise as part of their routine.
  • Support your loved one in reducing or eliminating caffeine or other stimulating substances.
  • Identify a list of soothing rituals that are effective in calming the person when agitation does occur. Having a plan for what to do in case of agitation will reduce anxiety for both you and your loved one.

How to respond

  • Reduce stimulation. Decrease noise and distractions or help the person move to a quieter place. Engage in pre-planned soothing rituals.
  • Use calm, positive, and reassuring statements. Say things like, “I will stay with you until you feel better” or “I’m sorry this is overwhelming.” Slow down your rate of speech.
  • Avoid asking questions or placing additional demands on the person. If you have to ask questions, avoid open-ended questions and instead offer the choice of options. Instead of asking “Where do you want to go?” try “We can go to the car or to the restroom.”
  • Consider whether pain, fatigue, hunger, thirst, temperature, or toileting demands could be causing physical discomfort.
  • Simplify the task at hand.
  • Provide an outlet to the situation that involves physical or focused activity. Offer to go for a walk or use art or music to divert attention away from anxiety.

Aggression and anger

Angry outbursts and aggressive behaviors can occur when confusion and cognitive overload escalate. Or they can occur suddenly and unexpectedly. Aggressive behaviors can be either verbal or physical. They tend to be triggered by environmental factors like extreme overstimulation or internal factors like pain, physical discomfort, or inability to communicate effectively. Provided that the situation does not present a physical threat, various approaches can help prevent or diffuse anger outbursts and aggressive behavior. The above prevention strategies for agitation are also effective in reducing the likelihood of angry outbursts and aggression.

Prevention strategies

  • Identify and talk about acceptable ways of expressing anger in the household. It’s important to acknowledge that anger will happen, and it can be helpful for a family to have a plan and agreement about how it can be safely expressed.
  • Try to establish consistent, non-confrontational responses from all family members. Role play and practice these responses to gain comfort.
  • Manage the environment to minimize triggers.
  • Be sure that pain management strategies are in place and minimize situations that are physically uncomfortable.

How to respond

  • Assess the level of danger. Harm can often be avoided by stepping back and standing away from the person. Direct others in the immediate environment to do the same.
  • Avoid physical contact, guidance, holding, or restraint.
  • Remain as calm as you can. Try not to get upset or take the behavior personally. Speak slowly and in a soft tone.
  • Don’t challenge, confront, or criticize the person. Be positive and reassuring. Consider the feelings underlying the behavior.
  • Help the person regain a sense of control by asking if there is anything that would help him to feel better.
  • Think about what happened right before the reaction that may have triggered the behavior. Try to understand the source of the anger and address the unmet need if possible.
  • Rule out pain as a factor in the escalation in the behavior. Pain can cause a person with a brain injury to act aggressively.
  • Try to change the person’s mood by agreeing and avoiding an argument. Show extra affection and support to address underlying frustrations.
  • Validate the emotion by identifying the feelings and letting the person know these feelings are legitimate. “It makes sense that you are angry” can be an effective response.
  • Shift focus to another activity. The immediate situation or activity may have unintentionally caused the aggressive response. Try something different.
  • Treat each incident as an isolated occurrence since the person may not remember having acted this way before.

About the author

April Groff, Ph.D. is a licensed clinical psychologist specializing in neuropsychology. She currently is the clinical director at Learning Services in North Carolina, where she oversees post-acute residential rehabilitation and supported living program for individuals with acquired brain injury.  Her previous roles include director of the Polytrauma Transitional Rehabilitation Program and staff psychologist within the Polytrauma Rehabilitation Center at the VA Palo Alto Healthcare System. She has extensive experience working with active duty service members, veterans, and civilians with brain injury and their family members.

Source

Special Collection on Brain Injury Journey Vol 1

This article is posted with permission from Brain Injury Journey – Hope, Help, Healing, Vol 1, 2014.

http://www.lapublishing.com/Brain-Injury-Journey-Magazine-Special-Collection-Vol-1

2 responses to “Behavior – Help for Families and Caregivers by April Groff, PhD”

  1. Mary Anderson says:

    Alice, I am a caregiver also to a husband who had a TBI when he was 17. He is now 65 and we have been married 31 years. It is a very difficult journey that you are on. I read the frustration you have in your message. One thing that I did for my self is start a support group for survivors and their spouses and families. I also host a caregiver coffee and chat twice a month. I started these groups because I felt that I needed to be surrounded by people who understand what I was going through. It has been a great benefit to have my feelings validated by other caregivers going through the same issues. Just like every brain injury is different so are the ways caregivers respond and their ability to handle their situation. I would suggest to find a support group for your self to talk with people who understand your situation and can give you the support you need. Caregivers usually end up giving more than they will receive back. One of the topics we discussed recently in our support group was grieving the old self and accepting the challenge of the new person. I still struggle with this sometimes but then realize my husband did not ask to live life with a brain injury either. I hope I have given you some encouragement with this post.
    Mary

  2. alice says:

    your article and suggestions are very nice except when you actually live with a loved one who has had an acquired brain injury, You can know all the right responses and understand the difficulties of the person – however you will still react in ways that aren’t ideal – when you are the one overwhelmed, tired and having issues and your partner is unable to provide you with the support understanding and care you need. Caregivers need professionals to really hear the challenges and not to give prescriptions for how to better handle an already extremely difficult set of circumstances. Your recommendations – if not met by caregiver only makes them feel that they aren’t doing enough to make things livable – very shallow – you professionals don’t live day to day in the situations – let’s see you remain calm when answering the same question for the 30th time in 10 minutes. And that’s the least of the problems.

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