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 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.
Most people with Huntington's 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:
Learning new things
Reasoning and judgment
Poor orientation to space and time
Strategies that may help cognitive challenges include:
Make sure the environment is quiet and free from distractions
when trying to explain something.
Make complex information simple. Explain in no more than three
small steps, and avoid giving too much material.
After writing down the steps, encourage the individual to
practice them repeatedly.
Allow plenty of time for learning, and ask the person to keep
repeating the steps (or to repeat what you have told him).
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.
Make your expectations very clear.
Schedule daily routines for all tasks.
Keep an appointment book for all dates that need to be
To aid memory, have the individual keep a log of things he has done.
Use labels on cabinets, drawers, and other items.
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
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:
Don't keep reminding the person of inappropriate behaviors.
Instead, focus on behaviors that would be more beneficial.
Find out what tends to trigger the anger. Common triggers
include inability to communicate, pain, hunger, and others'
Avoid confrontations and threats.
Remove all potential weapons from the house.
Try to get the person to focus on something other than the
source of his anger.
Provide reliable routines and a comforting environment that is
calm and structured.
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 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:
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
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 may become resistant, distressed, and angry if
pushed to do something else. The following tips may help break
Use humor to shift the person's attention on to something
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."
Use a schedule of timed activities.
Coping With Unawareness
Lack of self-awareness is common among individuals with
Huntington's disease. This means that they may not be 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:
Avoid being judgmental and seeing the behavior as
Find creative ways to get the person to cooperate, such as using
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.
Please be aware that this information is provided to supplement the care
provided by your physician. It is neither intended nor implied to be a
substitute for professional medical advice. CALL YOUR HEALTHCARE PROVIDER
IMMEDIATELY IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY. Always seek the
advice of your physician or other qualified health provider prior to
starting any new treatment or with any questions you may have regarding a