Pre-death grief in Parkinson's caregivers

A pilot survey-based study

Julie Carter, Karen Lyons, Allison Lindauer, J. Malcom

Research output: Contribution to journalArticle

12 Citations (Scopus)

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.

Original languageEnglish (US)
JournalParkinsonism and Related Disorders
Volume18
Issue numberSUPPL. 3
DOIs
StatePublished - Dec 2012

Fingerprint

Grief
Caregivers
Parkinson Disease
Surveys and Questionnaires
Volunteers
Regression Analysis
Hallucinations
Spouses

Keywords

  • Caregiver
  • Grief
  • Loss
  • Parkinson's disease

ASJC Scopus subject areas

  • Geriatrics and Gerontology
  • Clinical Neurology
  • Neurology

Cite this

Pre-death grief in Parkinson's caregivers : A pilot survey-based study. / Carter, Julie; Lyons, Karen; Lindauer, Allison; Malcom, J.

In: Parkinsonism and Related Disorders, Vol. 18, No. SUPPL. 3, 12.2012.

Research output: Contribution to journalArticle

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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.",
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