Assessment of Caregiver Burden in Huntington's Disease

J Huntingtons Dis. 2019;8(1):111-114. doi: 10.3233/JHD-180326.

Abstract

Huntington's disease (HD) is a rare neurodegenerative disease associated with disability and loss of patient independence. The caregivers of HD patients are at high risk for burnout. We aimed to identify variables that impact caregiver burden, as measured by the Modified Caregiver Strain Index (MCSI) and the Huntington's disease Quality of Life Battery for Carers Short Form (HD-SF). Total functional capacity and being sole caregiver were significantly associated with higher caregiver burden via MCSI. There was not good correlation between MCSI and HDQoLC-SF. This study highlights the need for more research to effectively identify at-risk caregivers for early intervention.

Keywords: Huntington’s disease; caregiver burden; quality of life in caregiving.

MeSH terms

  • Adaptation, Psychological / physiology*
  • Adult
  • Aged
  • Caregivers / psychology*
  • Female
  • Humans
  • Huntington Disease / physiopathology*
  • Male
  • Middle Aged
  • Neurodegenerative Diseases / physiopathology*
  • Quality of Life
  • Severity of Illness Index
  • Surveys and Questionnaires