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, 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:
There are some strategies that may help you meet these new challenges:
You may also find you have to be more precise about scheduling activities. Here are some time-saving ideas:
There will be changes in the emotional and behavioral state of the patient. You may see:
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:
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:
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 rigid behavior:
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:
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.
National Institute of Neurologic Disorders and Stroke from the National Institutes of Health
The Huntington Disease Society of America
Huntington Society of Canada
Huntington Disease. EBSCO DynaMed website. Available at: http://www.ebscohost.com/dynamed/what.php. 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-%20donna%20miller.pdf. Accessed December 10, 2012.
Wheelock, Vicki, MD. Managing Challenging Behaviors. Huntington's Disease Society of America website. Available at: http://www.hdsa.org/images/content/1/5/15017.pdf. 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.
Copyright © 2012 EBSCO Publishing All rights reserved.
What can we help you find?close ×