The impact of the nocturnal disabilities of Parkinson’s disease on caregivers’ burden: implications for interventions

Abstract

Parkinson's disease (PD) imposes a burden on those who care for the person afflicted. The objective of this study was to assess and analyze the main determinants of caregivers' burden, especially the nocturnal manifestations of PD. This multi-center, national, cross-sectional study included 89 patient-caregiver pairs. Caregiver self-assessments were performed with Hospital Anxiety and Depression Scale (HADS) and Zarit Caregiver Burden Interview (ZCBI). Patient self-assessments were performed with Modified Parkinson's Disease Sleep Scale (MPDSS), Nocturnal Akinesia Dystonia and Cramp Score (NADCS), HADS and Parkinson's Disease Quality of Life Questionnaire (PDQ-8). Most of the caregivers were employed women, and the majority had been permanently taking care of the patient for 6.8 ± 5.4 years. The study found that the ZCBI mean score of the caregivers significantly worsened as patients became more dependent (HY: 4-5, p = 0.036), and the mean ZCBI score of spousal caregivers (19.4; SD 15.5) was significantly higher than that of the offspring group (11.7; SD 7.9) (p = 0.008). Disease duration (r = 0.22), NADCS (r = 0.38), MPDSS (r = -0.36), PDQ-8 SI (r = 0.39) and HADS (total, anxiety and depression) scores (r = 0.46-0.49), and HADS (total, anxiety and depression scores (r = 0.37-0.52), had significant negative effect on caregivers' burden. Moderate association was found on MPDSS item 14 (r = 0.38) and NADCS akinesia score (r = 0.37). Patients' anxiety, nocturnal akinesia and the feeling of tiredness and sleepiness upon awakening in the morning were independent predictors of caregivers' burden (adjusted R2 = 0.46). Based on these findings, treatment of early mood symptoms of the patients and caregivers at risk may be helpful for the effective management of PD and it is also important to have well-designed psycho-educational and multicomponent interventions in the community for caregivers of persons with PD.