Huntington 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 his or her needs.
Keep in mind that each person affected by Huntington 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 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 states of the person you are caring for. You may see:
People with Huntington 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 disease. The following tips can help:
Take the time to remove potential weapons from the house. This will create a safe environment for everyone. Consult with a neurologist or psychiatrist to help you better manage outbursts.
The person affected by Huntington disease may seem unmotivated, lazy, indifferent, or depressed. They 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 disease may get fixated on a thought, idea, or routine, and have great difficulty moving onto something else. They 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 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 disease can be 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 Neurological Disorders and Stroke
The Huntington Disease Society of America
Huntington Society of Canada
Huntington disease. EBSCO DynaMed Plus website. Available at: http://www.dynamed.com/topics/dmp~AN~T113724/Huntington-disease. Updated July 25, 2016. Accessed October 25, 2016.
Munic-Miller D. Behavior issues managing behavior non-pharmacologic approaches. Huntington Disease Society of America website. Available at: http://hdsa.org/wp-content/uploads/2015/02/behavior-issues-donna-miller.pdf. Accessed October 25, 2016.
Wheelock V. Managing challenging behaviors. Huntington Disease Society of America website. Available at: http://hdsa.org/wp-content/uploads/2015/02/15017.pdf. Updated June 24, 2011. Accessed October 25, 2016.
Last reviewed October 2016 by Michael Woods, 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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