Managing Mental, Emotional, and Behavioral Challenges in Huntington's Disease
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. Cognitive ChangesMost 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:
Emotional and Behavioral ChangesThere will be changes in the emotional and behavioral state of the patient. You may see:
Managing Angry OutburstsPeople 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. Coping With ApathyThe 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). Breaking Rigid and Repetitive BehaviorA 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:
Coping With UnawarenessLack 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 Health Canada 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 |
Interactive tools
