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 their 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:
- Short-term memory
- Problem-solving ability
- Learning new things
- Reasoning and judgment
- Organizing ideas
- Poor 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 three 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.
- Keep an appointment book for all dates.
- Have the person keep a log of things he has done. (This can help with memory.)
There will be changes in the emotional and behavioral state of the patient. You may see:
- Displays of anger
- Rigid or repetitious behavior
- Lack of self-awareness
- Delusional thoughts
- Suicide and suicidal ideation.
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'
- 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.
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
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).
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
- Use humor to shift the person's attention 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 on one thing.
- Use a schedule of timed activities.
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
- Reword things so they do not sound confrontational.
- 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. 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.
Huntington Disease. EBSCO DynaMed website. Available at:
. Updated September 4, 2012. Accessed December 10, 2012.
Munic-Miller, Donna, PhD. Behavior Issues Managing Behavior Non-Pharmacologic Approaches. Huntington's Disease Society of America website. Available at:
http://www.hdsa.org/images/content/1/7/17140/behavior%20issues-%2...nna%20miller.pdf. Accessed December 10, 2012.
Wheelock, Vicki, MD. Managing Challenging Behaviors. Huntington's Disease Society of America website. Available at:
. Updated June 24, 2011. Accessed December 10, 2012.
Last reviewed December 2012 by Brian Randall, MD
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 medical condition.
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