A number of strategies may help people with Huntington's disease and their families cope with the challenges of the disease.
Support services for people with Huntington's disease and families include the following:
- Nonprofit agencies, such as the Huntington's Disease Society of America, provide caregiver education, referrals to outside services, and support groups for people with the disease and caregivers.
- Local and state health or social service agencies may provide daytime care for people with the disease, meal assistance programs or respite for caregivers.
Planning for residential and end-of-life care
Because Huntington's disease causes the progressive loss of function and death, it's important to anticipate care that will be needed in the advanced stages of the disease and near the end of life. Early discussions about this type of care enable the person with Huntington's disease to be engaged in these decisions and to communicate his or her preferences for care.
Creating legal documents that define end-of-life care can be beneficial to everyone. They empower the person with the disease, and they may help family members avoid conflict late in the disease progression. Your doctor can offer advice on the benefits and drawbacks of care options at a time when all choices can be carefully considered.
Matters that may need to be addressed include:
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- Care facilities. Care in the advanced stages of the disease will likely require in-home nursing care or care in an assisted living facility or nursing home.
- Hospice care. Hospice services provide care at the end of life that helps a person approach death with as little discomfort as possible. This care also provides support and education to the family to help them understand the process of dying.
- Living wills. Living wills are legal documents that enable a person to spell out care preferences when he or she isn't able to make decisions. For example, these directions might indicate whether or not the person wants life-sustaining interventions or aggressive treatment of an infection.
- Advance directives. These legal documents enable you to identify one or more people to make decisions on your behalf. You may create an advance directive for medical decisions or financial matters.
- 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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