Huntington disease is a genetic neurological disease that results in a progressive loss of control over body movements, thinking abilities, emotions, and behavior. These changes are marked by difficulty communicating, memory problems, slowed thinking, mood swings, 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 understand what is happening with your loved one so that you can respond sensitively to his or her needs.
Keep in mind that each person affected by Huntington disease is unique and has individual needs. The changes you notice in your loved one's behavior have nothing to do with character or personality, but are the result of the disease.
Most people with Huntington disease understand the majority of what is being said to them, even during the end stages of the disease. However, there are a number of cognitive problems that may impair functioning. There may be difficulties with:
- Short-term memory
- Problem-solving ability
- Learning new things
- Reasoning and judgment
- Organizing ideas
- Orientation to space and time
There are some strategies that may help you meet these new challenges:
- Make sure the environment is quiet and free from distractions when 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 to practice them repeatedly.
- Allow plenty of time for learning, and ask the person to keep repeating the steps.
You may also find you have to be more precise about scheduling activities. Here are some time-saving ideas:
- 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 Changes
There 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 Outbursts
People with Huntington disease lose their ability to control emotions. They may respond to denials with temper tantrums. Irritability and angry outbursts can be very challenging to family members. Try to respond with understanding and compassion, keeping in mind that these emotional problems are symptoms of Huntington 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 triggers include inability to communicate, pain, hunger, and others' unrealistic expectations.
- Try to get the person to focus on something other than the source of their anger.
Take the time to remove potential weapons from the house. This will create a safe environment for everyone. Consult with a neurologist or psychiatrist to help you better manage outbursts.
Coping With Apathy
The person affected by Huntington disease may seem unmotivated, lazy, indifferent, or depressed. They may sit around a lot, watch TV all day, and show little enthusiasm for initiating 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 once very 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, and sunlight.
If you suspect the apathy is part of a more serious condition like depression, contact your doctor for treatment options (which may include medication and/or therapy).
Breaking Rigid and Repetitive Behavior
A person with Huntington disease may get fixated on a thought, idea, or routine, and have great difficulty moving onto something else. They may become resistant, distressed, and angry if pushed to do something else. The following tips may help break rigid behavior:
- Use humor to shift the person's attention to something else.
- Calmly discuss the person's fears.
- Keep a list of the person's favorite activities and foods, and use them to shift attention when they appear to be stuck on one thing.
- Use a schedule of timed activities.
Coping With Unawareness
Lack of self-awareness is common among people with Huntington disease. This means that they may not be aware of how they are behaving, what they are doing, or their condition. It may appear that the person is in denial and does not accept the illness. Family members and caregivers should:
- Avoid being judgmental and seeing the behavior as intentional.
- Reword things so they do not sound confrontational.
- Find creative ways to get the person to cooperate, such as using rewards.
- State expectations clearly and in writing.
Caring for a loved one who has Huntington disease can be stressful for the whole family. Most of the strategies here (like maintaining a schedule or calendar) will work for many of the complications you will encounter.
Keep in mind that there are a number of resources available that can help you and your loved one cope better with these changes. Psychiatrists, psychologists, social workers, family therapists, and other counselors may be able to help. Check to see if your community, hospital, or other healthcare facility has support groups for caregivers or families.
- Reviewer: Michael Woods, MD
- Review Date: 10/2016 -
- Update Date: 11/25/2014 -