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Volume 43 Number 4, July/August 2006
Pages 499 — 508

Abstract - Caregiver distress in parkinsonism

David X. Cifu, MD;1-2* William Carne, PhD;1-2 Rashelle Brown, MS;2 Phillip Pegg, PhD;2 Jason Ong, PhD;2 Abu Qutubuddin, MD;1-3 Mark S. Baron, MD2-3

1Department of Physical Medicine and Rehabilitation, Virginia Commonwealth University, Richmond, VA; 2Southeast Parkinson's Disease Research, Education, and Clinical Center, Hunter Holmes McGuire Department of Veterans Affairs Medical Center, Richmond, VA; 3Department of Neurology, Virginia Commonwealth University, Richmond, VA
Abstract — This study examined the frequency and degree of caregiver burden in persons with parkinsonism, a group of disorders with four primary symptoms that include tremor, rigidity, postural instability, and bradykinesia. We assessed associations between perceived caregiver burden and physical, cognitive, and functional impairments using well-established tools for persons with parkinsonism. The 49 individuals with parkinsonism ranged in age from 61 to 87 (mean = 75), while their caregivers (N = 49) ranged in age from 48 to 83 (mean = 70). The caregivers were predominantly either wives (82%) or daughters (6%), with other family members, friends, and/or neighbors (12%) making up the rest. The caregivers reported a relatively high ability for coping (mean scores = 4.6/6). Caregiver burden was significantly negatively associated with activities of daily living and motoric difficulties as measured on the Unified Parkinson's Disease Rating Scale (UPDRS). Likewise, caregiver burden was negatively associated with caregiver self-reported sleep and coping ability. Results did not demonstrate an association on the UPDRS among mentation, behavior, and mood. We found a significant negative correlation for mentation between the Folstein Mini-Mental Status Examination and caregiver burden measures; however, we did not find this association with the Dementia Rating Scale-2. Patient's self-reported pain and caregiver burden were not associated.
Key words: aging parents, burnout, caregiver burden, caregiver distress, caregiver strain, disease progression, family burden, parkinsonism, Parkinson's disease, spousal support.

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