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 also can 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:
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- Using calendars and schedules to help keep a regular routine
- Initiating tasks with reminders or assistance
- Prioritizing or organizing work or activities
- Breaking down tasks into manageable steps
- Creating an environment that is as calm, simple and structured as possible
- Identifying and avoiding stressors that can trigger outbursts, irritability, depression or other problems
- 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
- Ferri FF. Ferri's Clinical Advisor 2014: 5 Books in 1. Philadelphia, Pa.: Mosby Elsevier; 2014. https://www.clinicalkey.com. Accessed Jan. 27, 2014.
- Tabrizi SJ, et al. Predictors of phenotypic progression and disease onset in premanifest and early-stage Huntington's disease in the TRACK-HD study: Analysis of 36-month observational data. The Lancet. 2013;12:637.
- Huntington's disease: Hope through research. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/huntington/huntington.htm. Accessed Jan. 27, 2014.
- Suchowersky O. Huntington disease: Clinical features and diagnosis. http://www.uptodate.com/home. Accessed Jan. 27, 2014.
- Huntington disease. The Merck Manuals: The Merck Manual for Health Care Professionals. http://www.merckmanuals.com/professional/neurologic_disorders/movement_and_cerebellar_disorders/huntington_disease.html. Accessed Jan. 29, 2014.
- Huntington's disease: A family guide. Huntington's Disease Society of America. http://www.hdsa.org/living-with-huntingtons/publications/index.html. Accessed Jan. 29, 2014.
- Novak MJ, et al. Huntington's disease. British Medical Journal. 2010;340:c3109.
- Suchowersky O. Huntington disease: Management. http://www.uptodate.com/home. Accessed Jan. 29, 2014.
- Bower JH (expert opinion). Mayo Clinic, Rochester, Minn. Feb. 5, 2014.
- Knopman DS (expert opinion). Mayo Clinic, Rochester, Minn. Feb. 5, 2014.
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