Nursing home residents with Huntington's disease: Heterogeneity in characteristics and functioning

Brain Cogn. 2023 Jul:169:106002. doi: 10.1016/j.bandc.2023.106002. Epub 2023 Jun 1.


Background: In Huntington's disease (HD), admission to a nursing home (NH) is required in advanced disease stages. To gain insight in care needs, more knowledge is needed on the functioning of this group.

Objective: Describing patient and disease characteristics, their functioning, and gender differences.

Methods: A cross-sectional descriptive design was used to collect data of 173 patients living in eight Dutch HD-specialized NHs. Data were collected on characteristics and functioning. We tested for gender differences.

Results: Mean age was 58.3 years and 49.7% were men. Activities of daily living and cognition varied from 46 to 49% mildly impaired to 22-23% severely impaired. Communication was severely impaired in 24%. Social functioning was low in 31% and high in 34%. A majority of patients used psychotropic medications (80.3%) and showed neuropsychiatric signs (74%). Women were on average more dependent in ADL (severely impaired 33.3% vs 12.8%), more often depressed (26.4% vs 11.6%), and prescribed antidepressant medications more often (64.4% vs 48.8%) than men.

Conclusions: The population of HD patients in NHs is heterogeneous in terms of patient and disease characteristics, and functioning. As a consequence, care needs are complex leading to implications for the required expertise of staff to provide adequate care and treatment.

Keywords: Advanced stage; Functioning; Gender differences; Huntington’s disease; Long term care.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Activities of Daily Living
  • Cognition
  • Cross-Sectional Studies
  • Female
  • Humans
  • Huntington Disease* / psychology
  • Huntington Disease* / therapy
  • Male
  • Middle Aged
  • Nursing Homes