Patient and caregiver perceptions of the social impact of advanced Parkinson's disease and dyskinesias

Alexander Khlebtovsky, Amihai Rigbi, Eldad Melamed, Ilan Ziv, Israel Steiner, Alona Gad, Ruth Djaldetti*

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review


Parkinson's disease (PD) exacts a physical and emotional toll on both patients and family. The aim of this study was to compare patient and caregiver perceptions of the social consequences of basic symptoms of PD and levodopa-induced dyskinesias. Forty patients with PD and dyskinesias and 35 of their caregivers completed a selfreport questionnaire on the impact of PD and dyskinesias on their feelings of security and embarrassment and participation in family/social events, and indicated their preference for the "on" (with dyskinesias) or the "off" (without dyskinesias) state. The patients scored significantly higher than the caregivers did on the negative social impact of the disease in general (p = 0.002) and of the dyskinesias in particular (p = 0.03). Nevertheless, the patients expressed a significantly greater preference for the "on" state (83 %) than the caregivers (59 %) (p = 0.03). Preferences turned to be reverse in direction among spouse-caregivers who significantly preferred the "off" state (54 %) than the patients (25 %) (p = 0.04). Although patients have a worse perception of the effects of PD than their caregivers do, they prefer the more independent "on" state, whereas their caregivers prefer the "off" state.

Original languageEnglish
Pages (from-to)1367-1371
Number of pages5
JournalJournal of Neural Transmission
Issue number11
StatePublished - Nov 2012


  • Dyskinesias
  • Parkinson's disease
  • Questionnaire
  • Social perception


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