Managing Huntington's disease is demanding on the person with the disorder, family members and other in-home caregivers. As the disease progresses, the person will become more dependent on caregivers. A number of issues will need to be addressed, and strategies to cope with them will evolve.
Eating and nutrition
Factors regarding eating and nutrition include the following:
- People with Huntington's disease often have difficulty maintaining a healthy body weight. Difficulty eating, higher caloric needs due to physical exertion or unknown metabolic problems may be the cause. To get adequate nutrition, more than three meals a day may be necessary.
- Difficulty with chewing, swallowing and fine motor skills can limit the amount of food you eat and increase the risk of choking. Problems may be minimized by removing distractions during a meal and selecting foods that are easier to eat. Utensils designed for people with limited fine motor skills and covered cups with straws or drinking spouts can also help.
Eventually, a person with Huntington's disease will need assistance with eating and drinking.
Managing cognitive and psychiatric disorders
Family and caregivers can help create an environment that may help a person with Huntington's disease avoid stressors and manage cognitive and behavioral challenges. These strategies include:
May. 05, 2011
- Using calendars and schedules to help keep a regular routine
- Identifying and avoiding stressors that can trigger outbursts, irritability, depression or other problems
- Creating an environment that is as calm, simple and structured as possible
- Initiating tasks with reminders or assistance
- Prioritizing or organizing work or activities
- Breaking down tasks into manageable steps
- For school-age children or adolescents, consulting with school staff to develop an appropriate individual education plan
- Providing opportunities for the person to maintain social interactions and friendships as much as possible
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- Rosenblatt A, et al. A physician's guide to the management of Huntington's disease. Huntington's Disease Society of America. http://www.hdsa.org/images/content/1/1/11682.pdf. Accessed March 28, 2011.
- Novak MJ, et al. Huntington's disease. British Medical Journal 2010;340:c3109.
- Depression. The Merck Manuals: The Merck Manual for Healthcare Professionals. http://www.merckmanuals.com/home/sec07/ch101/ch101b.html. Accessed April 4, 2011.
- Nance M. The juvenile HD handbook: A guide for families. Huntington's Disease Society of America. http://www.hdsa.org/images/content/1/1/11702.pdf. Accessed March 28, 2011.
- Paulsen JS, et al. Critical periods of suicide risk in Huntington's disease. The American Journal of Psychiatry 2005;162:725.
- Frank S, et al. Advances in the pharmacological management of Huntington's disease. Drugs 2010;70:561.
- Suchowersky O. Huntington disease: Management. http://www.uptodate.com/home/index.html. Accessed April 4, 2011.
- Katon W, et al. Initial treatment of depression in adults. http://www.uptodate.com/home/index.html. Accessed April 4, 2011.
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