Managing Mental, Emotional, and Behavioral Challenges in Huntington's Disease
Huntington's disease is a genetic neurological disease thatresults in a progressive loss of control over body movements,thinking abilities, emotions, and behavior. These changes are markedby difficulty communicating, memory problems, slowed thinking, moodswings, apathy, and lack of self-awareness. They take place as a result of degeneration of specific parts of the brain. It is important for you to understandwhat is happening with your loved one so that you can respondsensitively to their needs.Keep in mind that each person affected by Huntington's diseaseis unique and has individual needs. The changes you notice in yourloved one's behavior have nothing to do with character orpersonality, but are the result of the disease.
Cognitive ChangesMost people with Huntington's disease understand the majority of what is beingsaid to them, even during the end stages of the disease. However,there are a number of cognitive problems that may impairfunctioning. There may be difficulties with:
- Short-term memory
- Problem-solving ability
- Learning new things
- Reasoning and judgment
- Organizing ideas
- Poor orientation to space and time
- Make sure the environment is quiet and free from distractionswhen trying to explain something.
- Make your expectations very clear.
- Make complex information simple. Avoid giving too much at one time. Try to limit instructions to a maximum of 3 steps.
- After writing down the steps, encourage your loved one topractice them repeatedly.
- Allow plenty of time for learning, and ask the person to keeprepeating the steps.
- Schedule daily routines for all tasks.
- Use large, visible calendars,and clocks. These may include to-do lists, signs around the house, an alarm clock,or a wrist watch with an alarm.
- Make use of your cell phone and/or tablet with calendars, alarms, and apps.
- Keep an appointment book for all dates.
- Keep a log of completed tasks. This can help with memory.
Emotional and Behavioral ChangesThere will be changes in the emotional and behavioral states of the person you are caring for. You may see:
- Depression or anxiety
- Displays of anger
- Rigid or repetitious behavior
- Lack of self-awareness
- Delusional thoughts
- Suicide and suicidal ideation.
Managing Angry OutburstsPeople with Huntington's disease lose their ability to controlemotions. They may respond to denials with temper tantrums.Irritability and angry outbursts can be very challenging to familymembers. Try to respond with understanding and compassion,keeping in mind that these emotional problems are symptoms ofHuntington's disease. The following tips can help:
- Avoid confrontations and threats by creating a calm and structured environment.
- Do not keep reminding the person of inappropriate behaviors.Instead, focus on behaviors that would be more beneficial.
- Find out what triggers the anger. Common triggersinclude inability to communicate, pain, hunger, and others'unrealistic expectations.
- Try to get the person to focus on something other than thesource of their anger.
Coping With ApathyThe person affected by Huntington's disease may seemunmotivated, lazy, indifferent, or depressed. They may sitaround a lot, watch TV all day, and show little enthusiasm forinitiating activities. Although apathy is a part of depression, it does not mean the person has depression. Apathy happens over time and can be particularly frustrating for loved ones if the person was oncevery active. Family members and caregivers should:
- Avoid seeing the behavior as intentional and judging the loved one for it.
- Suggest an activity and try to get the person involved.
- Provide polite and respectful direction and support.
- Help the person develop a schedule of activities.
- Take the person outside for activities.
- Make sure the person gets regular social contact, exercise, andsunlight.
Breaking Rigid and Repetitive BehaviorA person with Huntington's disease may get fixated on a thought,idea, or routine, and have great difficulty moving onto somethingelse. They may become resistant, distressed, and angry ifpushed to do something else. The following tips may help breakrigid behavior:
- Use humor to shift the person's attention to somethingelse.
- Calmly discuss the person's fears.
- Keep a list of the person's favorite activities and foods, anduse them to shift attention when they appear to be stuck on one thing.
- Use a schedule of timed activities.
Coping With UnawarenessLack of self-awareness is common among people withHuntington's disease. This means that they may not be aware ofhow they are behaving, what they are doing, or their condition. Itmay appear that the person is in denial and does not accept theillness. Family members and caregivers should:
- Avoid being judgmental and seeing the behavior asintentional.
- Reword things so they do not sound confrontational.
- Find creative ways to get the person to cooperate, such as usingrewards.
- State expectations clearly and in writing.
National Institute of Neurological Disorders and Stroke
The Huntington Disease Society of America
Huntington Society of Canada
Huntington disease. EBSCO DynaMed website. Available at: http://www.ebscohost.com/dynamed. Updated August 11, 2014. Accessed November 25, 2014.
Wheelock, V. Managing challenging behaviors. Huntington's Disease Society of America website. Available at: http://www.hdsa.org/images/content/1/5/15017.pdf. Updated June 24, 2011. Accessed December 10, 2012.
- Reviewer: Michael Woods, MD
- Review Date: 11/2014
- Update Date: 11/25/2014