Pre-death grief in Parkinson's caregivers: A pilot survey-based study

• Published in: Parkinsonism & related disorders Vol. 18; pp. S15 - S18
• Main Authors: Carter, J.H, Lyons, K.S, Lindauer, A, Malcom, J
• Format: Journal Article
• Language: English
• Published: England Elsevier Ltd 01.12.2012
• Subjects: Aged; Attitude to Death; Caregiver; Caregivers - psychology; Cross-Sectional Studies; Data Collection - methods; Female; Grief; Humans; Loss; Male; Middle Aged; Neurology; Parkinson Disease - diagnosis; Parkinson Disease - psychology; Parkinson Disease - therapy; Parkinson's disease; Pilot Projects; Grief; Parkinson's disease; Caregiver; Loss
• ISSN: 1353-8020; 1873-5126
• DOI: 10.1016/j.parkreldis.2012.06.015

Abstract Objective To evaluate the evidence for pre-death grief in caregivers (CGs) of persons with Parkinson's disease (PD) and to compare non-motor PD symptoms (cognitive decline, depression, hallucinations) versus motor symptoms (fluctuations of mobility) for associations with CG grief reactions. Background Prolonged grief in response to loss has been associated with negative outcomes and decreased well-being in caregivers (i.e. spouse or adult child) of relatives with dementia. In Parkinson's disease (PD) the negative impact of providing care has been referred to as caregiver strain. Grief has not been explored in PD caregivers, and understanding grief may offer new insights for future intervention. Methods Volunteer caregivers ( n  = 74) filled out the Marwit and Meuser Caregiver Grief Inventory (MM-CGI-SF) which measures 3 types (i.e. subscales) of grief: Personal Sacrifice and Burden, Heartfelt Sadness and Longing, Worry and Felt Isolation. This scale also provided a total grief score. Volunteer caregivers also responded to self-reported UPDRS questions about the motor and non-motor symptoms of their PD relative (i.e. spouse or parent). T -tests were used to correlate CG subscales of grief with patient variables. A hierarchical regression analysis was used to determine the predictive contribution of motor and nonmotor symptoms to grief. Results Grief based on the total score was found in 17% of CGs. Grief was significantly higher in CG's whose relative had more severe symptoms. The type of grief experienced was similar across all three subscales. Hierarchical regression analysis revealed that nonmotor symptoms explained slightly more of the variance (14–23%) than motor symptoms (11–17%). Conclusions This study revealed that pre-death grief is a significant finding in PD caregivers. The severity of symptoms and the presence of nonmotor symptoms, especially cognitive decline, predict caregivers who are at greatest risk of prolonged grief; however it should be kept in mind that motor symptoms also contribute.