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 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:
Strategies that may help cognitive challenges include:
A number of emotional changes can take place with Huntington's disease, including:
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:
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:
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 rigid behavior:
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:
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.
RESOURCES:
The Huntington Disease Society of America
http://www.hdsa.org/
International Huntington Association
http://www.huntington-assoc.com/
CANADIAN RESOURCES:
Health Canada
http://www.hc-sc.gc.ca/index_e.html/
Huntington Society of Canada
http://www.huntingtonsociety.ca/english/index.asp/
References:
Jankovic J, Shannon KM. Movement disorders. In: Bradley WG, Daroff RB, Fenichel GM, eds. Neurology in Clinical Practice. 5th ed. Philadelphia, PA: Butterworth Heniemann Elsevier; 2008:2081-2122.
Murray LL, Stout JC. Discourse comprehension in Huntington's and Parkinson's diseases. American Journal of Speech-Language Pathology. 1999;8:137-148.
Last reviewed January 2009 by Judy Chang, MD, FAASM
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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