Huntington’s Disease: Quality of Life and Diet

  • Glenn R. Marland
  • Colin R. Martin


Huntington’s disease is currently incurable; death occurs around 20 years from symptom onset, so attempts to understand and promote quality of life are essential. Meeting dietary needs is a constant challenge for carers and health workers and is inextricably connected to any consideration of quality of life. As Huntington’s disease is a progressive degenerative condition, its presentation and subsequent challenges change throughout its course but may be illustrated in early middle and late stages.


Percutaneous Endoscopic Gastrostomy Autosomal Dominant Gene Unintended Weight Loss Adequate Calorific Intake Disease Collaborative Research Group 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.



Body Mass Index


Cytosine, adenine, and guanine


Driver Vehicle Licensing Authority


European Huntington’s Disease Initiative


Huntington’s disease


Huntington’s disease Association


Huntington’s disease Quality of Life Battery for Carers


Percutaneous endoscopic gastrostomy feeding


Quality of life


  1. Aubeeluck A, Buchanan H. The Huntington’s disease quality of life battery for carers: reliability and validity. Clin Genet. 2007;71(5):434–45.PubMedCrossRefGoogle Scholar
  2. Aubeeluck A, Wilson E, Seymour J, Taylor R. Clin Genet. 2009;76(Suppl. 1):95–101.Google Scholar
  3. Aziz N, Van der Burg J, Landwehrmeyer J, Brundin P, Stijnen T. Weight loss in Huntington disease increases with higher CAG repeat number. Neurol. 2008;71:1506–13.CrossRefGoogle Scholar
  4. Bombard Y, Palin J, Veenstra G, Friedman J, Creighton S, Currie L, Paulsen J, Bottorff J, Hayden M. Clin. Genet. 2009;76 (Suppl. 1):95–101.Google Scholar
  5. Bonelli RM, Wenning GK, Kapfhammer HP, Huntington’s disease: present treatments and future therapeutic modalities. Int Clin Psycgopharmacol. 2004;19(2): 51–62.Google Scholar
  6. Bentley P. Dementia demystified. Nurs Times. 1999;95(45):47–9.PubMedGoogle Scholar
  7. Fedoroff, J, Peyser, C, Franz M, Folstein S. Sexual disorders in Huntington’s disease. J Neuropsychiatr Clin Neurosci. 1994;6:147–53.Google Scholar
  8. Gaba A, Zhang K, Marder K, et al. Energy balance in early-stage Huntington disease. Am J Clin Nutr; 2005;81:1335–41.PubMedGoogle Scholar
  9. Harper P, editor. Huntington’s disease: major problems in neurology, 2nd edition. London: Saunders; 1996.Google Scholar
  10. Hart S, Semple J, editors. Neuropsychology and the dementias. London: Taylor and Francis; 1990.Google Scholar
  11. Hawkes C. Olfaction in neurodegenerative disorder. In: Hummel T, Welge-Lüssen A, editors. Taste and smell, an update. Basel: Karger; 2006.Google Scholar
  12. Hoffman N. Understanding the neuropsychiatric symptoms of Huntington’s disease. J Neurosci Nurs. 1999;31(5):309–13.CrossRefGoogle Scholar
  13. Huntington’s Study Group. Unified Huntington’s Disease Rating Scale: reliability and consistency. Mov Disord. 1996;11(2):136–42.CrossRefGoogle Scholar
  14. Kent A. Huntington’s disease. Nurs Standard. 2004;18(32):45–51.Google Scholar
  15. Kirkwood S, et al. Progression of symptoms in the early and middle stages of Huntington’s disease. Arch Neurol. 2001;58(2):273–8.PubMedCrossRefGoogle Scholar
  16. Kolb B, Whishaw I. Fundamentals of human neuropsychology, 4th edition. New York: WH Freeman; 1995.Google Scholar
  17. Markianos M, Panas M, Kalfakis N, Vassilopoulos D. Plasma testosterone in male patients with Huntington’s disease: relations to severity of illness and dementia. Ann Neurol. 2005;57:520–5.PubMedCrossRefGoogle Scholar
  18. Morales M, Estevez J, Suarez H, Villalobos R, Chacin D, Bonilla E. Nutritional evaluation of Huntington disease patients. Am J Clin Nutr. 1989;50:145–50.PubMedGoogle Scholar
  19. Van der Burg J, Bacos K, Wood I, et al. Increased metabolism in the R6/2 mouse model of Huntington’s disease. Neurobiol Dis. 2008;29:41–51.PubMedCrossRefGoogle Scholar
  20. Mochel F, Charles P, Seguin F, et al. Early energy deficit in Huntington disease: identification of a plasma biomarker traceable during disease progression. PLoS ONE 2007;2:e647.PubMedCrossRefGoogle Scholar
  21. McGill M. Scottish Huntington’s Association Annual Report 2002–2003. SHA: Elderslie; 2003.Google Scholar
  22. McLeod A. Multiple sclerosis and palliative medicine. Progr Palliative Care. 2001;9(5):196–8.Google Scholar
  23. Meiser B, Dunn S. Psychological impact of genetic testing for Huntington’s disease: an update of the literature. J Neurol Neurosurg Psychiatr 2000;69 5 574–8.PubMedCrossRefGoogle Scholar
  24. Nance M, Sanders G. Characteristics of individuals with Huntington disease in long-term care. Mov Disord. 1996;11:542–8.PubMedCrossRefGoogle Scholar
  25. Oneschuck D. Progressive multifocal leucoencepholopathy and sporadic Creutzfeld-Jacob disease: a review and palliative management in a hospice setting. Progr Palliative Care. 2001;9(5):202–05.Google Scholar
  26. Pratley R, Salbe A, Ravussin E, Caviness J. Higher sedentary energy expenditure in patients with Huntington’s disease. Ann Neurol. 2000;47:64–70.PubMedCrossRefGoogle Scholar
  27. Quarrell O. Huntington’s disease: the facts. Oxford: Oxford University Press; 1999.Google Scholar
  28. Rae D, Simpson S, Campos L. On behalf of the EHDN Standards of Care Dieticians Working Group Department of Clinical Genetics, Grampian University Hospital Trust, Aberdeen, Scotland, UK. Clin Genet. 2009;76(Suppl. 1):85–94.Google Scholar
  29. Raphael M, Bonelli A, Gregor K, Wenning B, Hans P, Kapfhammer A. Int J Clin Psychopharmacol. 2004;19:51–62.CrossRefGoogle Scholar
  30. The Huntington’s Disease Collaborative Research Group. A novel gene containing a trinucleotide repeat that is expanded and unstable on Huntington’s disease chromosomes. Cell. 1993;72:971–83.CrossRefGoogle Scholar
  31. The Huntington’s Disease Association, Fact Sheet 1. General information about Huntington’s disease and the Huntington’s disease Association; 2008. Accessed Dec 18, 2009.
  32. The Huntington’s Disease Association, Fact Sheet 5. Huntington’s disease and diet; 2008. Accessed Dec 18, 2009.
  33. The Huntington’s Disease Association, Fact Sheet 8. The importance of dental care; 2008. Accessed Dec 18, 2009.
  34. The Huntington’s Disease Association, Fact Sheet 13. Huntington’s disease and driving; 2008. Accessed Dec 18, 2009.
  35. Travers E, Partington D. The Scottish Huntington’s Association Palliative Care Education Project. Scottish Nurse. 2004;9:30–1.Google Scholar
  36. Tsuang M, Vandermey R. Genes and the mind: inheritance of mental illness. Oxford: Oxford University Press; 1980.Google Scholar
  37. Zhang RY, Li L, Zhang L, Wang H, Yei CF. Effects of Shenwu capsule on the behavior and neurotrophic factors in the rats with mimic Huntington’s disease. J Beijing Univ TCM. 2003;26:34–8.Google Scholar

Copyright information

© Springer Science+Business Media, LLC 2011

Authors and Affiliations

  1. 1.School of Health, Nursing and MidwiferyUniversity of the West of ScotlandDumfriesUK

Personalised recommendations