Severity of Caregiver Stress in Relation to Severity of Disease in Persons with Parkinson’s

Abstract

Introduction Parkinson’s disease (PD) is a progressive neurological disorder. It presents with motor symptoms and gradually progresses to cognitive impairment. It has debilitating impact not only on the psychological health of the patient but also of the caregivers. The aim of this study is to evaluate the stress level among caregivers of PD and assess its correlation with the disease factors including duration, severity, and presence of on-off phenomenon. Methods One hundred and fifty-six patients of Parkinson’s disease and their caregivers were enrolled. Severity of Parkinson’s disease was assessed using Hoehn and Yahr Scale. Caregiver stress was evaluated using Caregiver Burden Inventory. Data was entered and analyzed using Statistical Package for the Social Sciences (SPSS) version 22.0 (IBM Corp., Armonk, NY, USA). Results There were 112 (71.8%) women and 44 (28.2%) men in the caregiver group. Their mean age was 47.75 ± 11.98 years. There were 98 (62.8%) stressed caregivers and 58 (37.2%) non-stressed caregivers. In patients with stage 4 and 5 PD, 67-80% caregivers were stressed as compared to only 28% caregivers of stage 1 PD (p-value = 0.0008). Duration of Parkinson’s disease more than 10 years and presence of on-off phenomenon was also significantly associated with higher stress in the caregivers (p-value < 0.00001; p-value = 0.002, respectively). Among the stressed caregivers, 85 (86.7%) were women and only 13 (13.3%) were men (p-value < 0.0001). Conclusion Psychological health of caregivers of persons with Parkinson’s is bleak. As the disease progresses, they further succumb to debilitating stress and depression. Qualitative and quantitative studies must be conducted in Pakistan to understand the psychosocial status of Parkinson’s disease caregivers and plan strategies to improve their quality of life.

Psychiatric Symptoms in Patients and Caregivers with Parkinson’s Disease

“…A study reported that the severity of stress in caregivers was correlated with their gender. 31 Similar to this result, a study reported that PDCs had more anxiety and depressive symptoms than their male counterparts. 8 …”

“…In line with our results, a recent study indicated that the stress level among PDCs was correlated with the duration and severity of PD in patients. 31 Another study reported that PDCs had more severe depression, greater tiredness, and less life satisfaction compared with the healthy elderly population. 32 …”

Real-world assessment of “OFF” episode–related healthcare resource utilization among patients with Parkinson’s disease in the United States

“…These patients were also less likely to live alone and more likely to be living in a nursing home and being cared for by a professional caregiver than those who had no "OFF" episodes. This suggests an increasing caregiver burden associated with "OFF" episodes, as was observed in other studies 26 . Effect associated with the hourly change in "OFF" time (i.e.…”

Current Knowledge on the Evolution of Care Partner Burden, Needs, and Coping in Parkinson's Disease

“…[39][40][41] Similar studies in PD are needed to examine longitudinal associations. For instance, the relationship between severity of PD and care partner burden has been examined cross-sectionally, 42 but not longitudinally. Factors of interest related to the person with PD that have not yet been evaluated in longitudinal literature in PD, but have been identified as potentially relevant in cross-sectional studies or longitudinally in other chronic neurological diseases are motor severity, disease-related symptoms (psychosis, cognitive impairment, apathy, impulse control disorders, etc.…”