Is There a Relation Between Caregiver Burden and Cognitive Dysfunction in Huntington’s Disease?

M. M. Schumacher-Kuiper, A. M. van Loon, C. F. W. Peeters, M. R. Ekkel, C. M. P. M. Hertogh, R. B. Veenhuizen

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7 Citations (Scopus)


Caring for a family member with Huntington’s disease (HD) can be seriously burdensome. Cognitive and neuropsychiatric symptoms that are part of HD can impact the quality of life of caregivers. Therefore, we investigated the relationship between caregiver burden, cognitive impairment and patient characteristics. A retrospective cross-sectional study was performed on 33 adult HD-outpatient-caregiver dyads. We assessed caregiver burden and cognitive functioning of the included patient on the same day with the MCSI and MoCA respectively. For statistical analysis, we performed a network analysis and used descriptive statistics to describe our study sample. Caregivers scored on average 13.5 out of 26 points on the MCSI. The scores on the MoCA of the HD patients varied from 9 to 30 and was on average 22. Our network analysis demonstrated an indirect relationship between cognitive functioning and caregiver burden, in which CAG repeat length and the time since HD has been diagnosed are the primary mediators. We found a negative association between CAG repeat length and cognitive functioning. Furthermore, a relationship was found between higher caregiver burden and psychotropic drug use. We observed an indirect relationship between cognitive functioning and caregiver burden using network analysis. This analysis produces comprehensible results with the variables of interest. This study sheds new light on the components that make up caregiver burden in HD.
Original languageEnglish
Pages (from-to)61-71
Number of pages11
JournalJournal of Psychosocial Rehabilitation and Mental Health
Issue number1
Publication statusPublished - 1 Apr 2021


  • CAG repeat
  • Caregiver burden
  • Cognition
  • Network analysis
  • Psychotropic drugs

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