Managing Mental, Emotional, and Behavioral Challenges in Huntington's Disease

Managing Angry Outbursts

People with Huntington's 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'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 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 his anger.

Take the time to remove potential weapons from the house. This will create a safe environment for everyone. If you find the anger becomes frequent and severe, an evaluation from a neurologist or psychiatrist may be helpful.

Coping With Apathy

The person affected by Huntington's disease may seem unmotivated, lazy, indifferent, or depressed. He 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's disease may get fixated on a thought, idea, or routine, and have great difficulty moving onto something else. He 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's 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's disease can be very 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.