Managing Challenging Behaviors in HD

Managing Challenging Behaviors in HD

Huntington's disease impairs the functioning of the brain, which can result in apathy, trouble organizing, impulsivity, irritability and anger, unawareness, disinhibition, preservation, and other psychiatric symptoms. These emotional and behavioral symptoms can further complicate the caregiver's role. Although not everyone with HD experiences these symptoms, you are not alone if you feel frustrated or upset when trying to manage these challenging behaviors. Below are some common challenging behaviors that caregivers and those with HD face, strategies that you can use to manage these symptoms, and additional resources to support you. Consider joining a support group for additional ideas and support in managing challenging HD symptoms.

Please contact us for support and more information about managing challenging behaviors in HD.

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Presents as:
  • Inattention, lethargy, less concern for things

  • Inability to initiate behavior

  • Can be misread as depression

  • Don’t accuse the person of being "lazy," unhelpful, or uncaring—recognize apathy as a symptom of HD
  • Encourage the person with HD to join you in doing activities
  • Make sure the person with HD gets regular social contact, exercise, and sunlight—these activities can also help with other symptoms
  • Visual reminders (whiteboard, calendar, to-do lists, etc.) can help

    • It is helpful to include specific days/times to do each task

  • Use alerts (alarms, reminders, watches with alarms, etc.) or text messages that remind the person when to complete activities/tasks

  • Medications may help

Presents as:
  • Trouble planning, sequencing, and prioritizing information

  • Limit the amount of information and allow for a slow processing speed—simplify complex information/instructions

  • Reduce distractions in the environment

  • Keep to a regular routine—consistent and structured routines make it easier for the person to stay organized

  • Use whiteboards, planners, calendars, sticky notes, picture boards, and other visual cues—keep them in the same place (i.e. a fridge, desk, etc.)

  • Keep a log of completed tasks to aid memory

  • Focus on one task at a time with HD

Presents as:
  • Difficulty controlling emotional response

  • Easily loses temper

  • Inability to wait

  • Identify triggers (environmental, personal, etc.)

  • Use active listening

  • Remain composed—try to not escalate the situation

  • Routine can reduce feelings of confusion

We all have this whether we have HD or not. However, the brain is unable to control the intensity of the response in HD. Your loved one with HD may become easily upset, angry, and stuck on an action or idea. It is important to remember that these outbursts of anger are commonly the result of HD, and the person with HD may not understand that you are trying to help them.  Brain changes make it difficult for someone with HD to view situations from the perspectives of others.

Presents as:
  • Yelling a lot, cursing

  • Threatening statements or gestures

  • Throwing or punching objects

  • Hunger/thirst

  • Fatigue/poor sleep

  • Pain or discomfort

  • Physical environment—too noisy, too many people, too hot/too cold, too bright, etc.

  • Change in routine

  • Fear

  • Understimulation (boredom)

  • Overstimulation (overwhelmed or overloaded)

  • Challenges due to delusions or repetitive thoughts

  • Or can results from:

    • Frustration (inability to communicate, stopped from doing a task, or loss of ability to do something)

    • Depression or anxiety

    • Delusions or hallucinations

  • Try to avoid the physical and environmental triggers listed above—pay attention to common triggers and keep track of patterns

  • Pay close attention to signals (verbal and nonverbal) that indicate the person is getting angry/frustrated, and try to de-escalate the situation as quickly as possible:

    • Avoid confrontation—do not try to argue with them or reason them through a thought process (this tends to increase agitation)

    • Keep a calm tone of voice

    • Empathize with them and acknowledge the emotion behind the behavior (i.e. "You must feel so frustrated.")

    • Redirect their attention or distract if possible

    • Use simple, clear communication

    • Leave the room until the person calms down, especially if there is a threat of physical aggression

    • Accept apologies without blaming—remind yourself that this is likely the disease talking

  • Allow the person with HD to maintain independence when possible—allow for choices when appropriate

  • Text-to-speech, speech-to-text, and other applications may be helpful for frustrations related to reading and writing—learn about what accessibility tools are available on your devices

  • Tasks should be appropriate to the level of functioning—complicated tasks can create frustration

  • Choose your battles and recognize when it is necessary to let something go

  • Exercise, breathing techniques, meditation, yoga, and other forms of stress reduction may reduce irritability

  • Address substance misuse, which may increase the risk of dangerous behaviors

  • Remove any weapons or other dangerous objects from the home (guns, knives, etc.)

  • Medications can help

  • Do not hesitate to seek additional help—reach out to the HD Center, family members, support groups, etc.

Presents as:
  • Inability to cope with distressing circumstance (e.g. bereavement)

  • Lack of insight or self-awareness (e.g. not being able to recognize their own disabilities or recognize their own behavior)

  • Pay attention to how you word your concerns to your loved one to avoid sounding confrontational

  • Often there is no best way to cope—it requires creative thinking

Presents as:
  • Becoming stuck on a subject (i.e. cigarettes, coffee, meal times, going somewhere)

  • Difficulty switching from one activity to another

  • Respond in a calm, supportive manner—empathize so that they feel understood

  • Have the person finish one task before starting another

  • Build the idea/action that they commonly get stuck on into a routine (i.e. schedule meals at specific times of day)

  • Use distraction/humor to get them off of an idea or action

  • Accommodate the behavior if it is safe to do so

  • Medications may help

  • "Managing Behavioral Symptoms" – Jillian Foster, RMN, describes how to manage behavioral symptoms of HD (apathy, trouble organizing, impulsivity, irritability and anger, denial, disinhibition, and preservation). Presented at HDYO's International Young Adult Congress in March 2021.

  • "Caregiver's Corner: Managing Psychiatric Symptoms" – Peg Nopoulos, MD, explains how to manage depression, apathy, frontal lobe symptoms (agitation/irritability, impulsivity/disinhibition, lack of insight), anxiety, obsessions and compulsions, and psychosis in HD. Provided by HDSA.

  • "Psychiatric Syndromes in Huntington's Disease – Assessment and Management" – Adam Rosenblatt, MD, explains psychiatric and behavioral concerns in HD and ways to manage and treat these symptoms (depression, suicide, mania, obsessions, compulsions, psychosis, apathy, preservation/fixation, irritability, and others). Provided by HDSA.

  • For Managing Specific Symptoms/Behavioral Concerns: