ABSTRACT
The objective of this study was to examine the experience of spouses caregiving for their spouse with Parkinson's disease (PD) and to determine whether their experiences differed by stage of disease. By using a cross-sectional design and mail questionnaire data from 380 spouse caregivers across 23 sites of the Parkinson Study Group, key caregiver variables were examined by stage of PD. Three categories of variables--caregiver role strain (10 measures), caregiver situation (four measures), and caregiver characteristics (four measures)--were analyzed by using t tests with Bonferroni correction. Specific types and amounts of role strain accumulated as the disease progressed, and they differed significantly between stages (p < 0.05). In the caregiving situation, the mean number of caregiving tasks tripled by stage 4/5. Negative changes in lifestyle plus decreases in predictability in caregivers' lives increased significantly in late-stage disease (p < 0.05). Caregiver characteristics of physical health and preparedness did not significantly differ across stages of disease. Depression was significantly higher by stage 4/5. Mutuality, the positive quality of the relationship as perceived by the caregiving spouse, declined beginning at stage 2. Caregiver strain is experienced across all stages of PD and accumulates significantly as the disease progresses. This study defines types and amounts of strain by stage of disease, which will be helpful in designing formal intervention trials to provide more effective help for spouse caregivers.
Subject(s)
Caregivers/psychology , Family Health , Parkinson Disease/psychology , Aged , Analysis of Variance , Cross-Sectional Studies , Depression/etiology , Disease Progression , Female , Humans , Male , Middle Aged , Pilot Projects , Sampling Studies , Severity of Illness IndexABSTRACT
We conducted prospective cognitive assessments over 14 +/- 6 (mean +/- SD) months of observation as part of the multicenter trial Deprenyl and Tocopherol Antioxidative Therapy of Parkinsonism (DATATOP), which involved 800 patients with early untreated Parkinson's disease. We administered tests that measured memory, visuospatial, and frontal lobe functions. Subjects were randomly assigned to receive placebo, deprenyl (10 mg/d), tocopherol (2,000 IU/d), or both deprenyl and tocopherol. We analyzed treatment effects using annualized rates of cognitive change. We performed exploratory analyses to identify potential clinical and demographic correlates of cognitive performance. There was no significant effect of either deprenyl or tocopherol on cognitive test performance. In early untreated Parkinson's disease, cognitive performance appears to be stable and unrelated to either motor deterioration or treatment with deprenyl or tocopherol.
