The evaluation of well-being and distress in patients with Parkinson's Disease and in their caregivers

Studies on Parkinson’s Disease (PD) traditionally focused on psychological symptoms and distress reported by patients and by their caregivers. However, they may sometimes experience also positive psychological changes and develop new existential resources that may help them to better face the illness.Within this perspective, only few investigations explored PD patients and their caregivers. The aim of this Phd thesis was to investigate well-being and distress in patients with PD and in their caregivers with four studies (two cross-sectional and comparative and two longitudinal). Methods: 54 patients with PD, and 60 controls were recruited together with 50 caregivers of PD patients and 70 caregivers of controls. All participants completed questionnaires to measure both well-being dimensions and distress. In addition, a physician collected PD patients’ clinical data. A six month follow-up was performed. In study 1 and study 2 patients were compared to their respective controls. Studies 3 and 4 with a longitudinal design examined the predictors of the psychological adaptation to PD of patients and of their caregivers, respectively. Results: In study 1, patients reported more distress and less life satisfaction but more well-being than controls. In study 2, caregivers reported more distress and less well-being than their controls. In studies 3 and 4 it was found that the presence of well-being at the first evaluation together with the level of disability and caregiver burden (for patients and caregivers, respectively) were found to predict the level of adaptation to the illness at the second evaluation. Conclusions: although PD patients and their caregivers may exhibit impaired levels of well-being and distress, in the long term those who report higher levels of psychological resources can experience a better adaptation to the illness. The importance of considering psychological resources when evaluating PD patients’ and their caregivers psychological functioning is suggested.