The Impact of Parkinsonian Syndromes on Carers over Time

The task of taking care of a parkinsonian's patient results in pressure on the carer themselves, which may have the adverse effect on their own health, social life and financial condition. The goal here is to compare the health of the carer at the point of diagnosis of the patient and to see how the health of the carer changes as the patients' disease progresses. The PINE study recruited patients who are newly diagnosed with parkinsonian syndromes and follow-up annually. Two patient diagnosis groups were created (Parkinson disease versus atypical parkinsonian syndromes) and comparisons of burden, mood and quality of life between the carers of these groups were undertaken. In this paper, we looked at the change in carer outcomes at various patient milestones: dementia, institutionalisation, motor fluctuation and dyskinesia. We also compared the health change of carer along with the follow up between two groups and find the factor which influences the carer' health change. The results shows that 194 carers were recruited (128 Parkinson's disease and 66 atypical parkinsonian syndromes) in the PINE study. Baseline carer characteristics were similar across the two groups. At baseline, the carer burden and depression level was higher in carers who had provided care longer and provided more care per day, carer' quality of life lowered and level of depression increased along with carer age, the level of quality of life has a negative relationship with the years known patients. The carer burden was higher for females compared to males and if the patient had an atypical parkinsonian syndrome rather than Parkinson disease. Carers who were employed had a higher quality of life and lower level of depression than those who had no job. The most important contributors to carer strain index (CSI) were upset that the person had changed (15.94 %), feeling overwhelmed (9.31 %) and confined (e.g. restricted free time) (9.49 %). During follow-up, the carer's CSI (P=0.002) and GDS-15 (P=0.004) was significantly worse after patients were diagnosed with dementia. The CSI and GDS-15 increased (higher burden and greater depression) and the EQ-5D decreased (lower quality of life) as follow-up increased. In conclusion, the carer' health status, quality of life and mood becomes worse as the patient parkinsonian syndromes progressed. The burden and depression level of the carer was significantly higher in the atypical parkinsonian syndromes group. These are important to provide guidance to the health management.