Huntington's 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, lack of self-awareness, and impaired visual perception. They take place as a result of degeneration of a specific part of the brain. It's 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's 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.

Cognitive Changes

Most people with Huntington's disease understand 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 and intermediate memory
  • Problem-solving ability
  • Learning new things
  • Reasoning and judgment
  • Organizing ideas
  • Concentration
  • Mathematical computations
  • Poor orientation to space and time

Strategies that may help cognitive challenges

  1. Make sure the environment is quiet and free from distractions when trying to explain something.
  2. Make complex information simple. Explain in no more than three small steps, and avoid giving too much material.
  3. After writing down the steps, encourage the individual to practice them repeatedly.
  4. Allow plenty of time for learning, and ask the person to keep repeating the steps (or to repeat what you have told him).
  5. For reminders and organization, 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.
  6. Make your expectations very clear.
  7. Schedule daily routines for all tasks.
  8. Keep an appointment book for all dates that need to be remembered.
  9. To aid memory, have the individual keep a log of things he or she has done.
  10. Use labels on cabinets, drawers, and other items.
  11. If the person has difficulty reading, try large print books or books on tape.

Emotional and Behavioral Changes

A number of emotional changes can take place with Huntington's disease, including:

  • Depression and melancholy
  • Displays of anger
  • Apathy
  • Rigid or repetitious behavior
  • Lack of self-awareness
  • Delusional thoughts
  • Anxiety

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. They need to respond with understanding and compassion, keeping in mind that these emotional problems are symptoms of Huntington's disease. The following tips can help:

  1. Don't keep reminding the person of inappropriate behaviors. Instead, focus on behaviors that would be more beneficial.
  2. Find out what tends to trigger the anger. Common triggers include inability to communicate, pain, hunger, and others' unrealistic expectations.
  3. Avoid confrontations and threats.
  4. Remove all potential weapons from the house.
  5. Try to get the person to focus on something other than the source of his or her anger.
  6. Provide reliable routines and a comforting environment that is calm and structured.
  7. If anger becomes frequent and severe, consider seeing a neurologist or psychiatrist for medication.

Coping With Apathy

The person affected by Huntington's disease may seem unmotivated, lazy, indifferent, or depressed. He or she may sit around a lot, watch TV all day, and show little enthusiasm for initiating activities. This behavior tends to get worse in time and is particularly frustrating for loved ones if the person was once very active. Family members and caregivers should:

  1. Avoid being judgmental.
  2. Suggest an activity and try to get the person involved.
  3. Provide polite and respectful direction and support.
  4. Help the person develop a schedule of activities.
  5. Take the person outside for activities.
  6. Make sure the person gets regular social contact, exercise, and sunlight.
  7. Be sure that depression is treated with psychotherapy and medicine, if necessary.

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 on to something else. He or she may become resistant, distressed, and angry if pushed to do something else. The following tips may help break rigid behavior:

  1. Use humor to shift the person's attention on to something else.
  2. Calmly discuss the person's fears.
  3. Keep a list of the person's favorite activities and foods, and use them to shift attention when they appear to be "stuck."
  4. Use a schedule of timed activities.

Coping With Unawareness

Lack of self-awareness is common among individuals with Huntington's disease. This means that many of them are not aware of how they are behaving, what they're doing, or their condition. It may appear that the person is in denial and does not accept the illness. Family members and caregivers should:

  1. Avoid being judgmental and seeing the behavior as intentional.
  2. Find creative ways to get the person to cooperate, such as using rewards.
  3. State expectations clearly and in writing.

Caring for a loved one who has Huntington's disease can be very stressful for the whole family. 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.