Caregiver distress in parkinsonism

Abstract

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.

What matters to people with Parkinson’s disease living in Australia?

“…Owing to both the motor and non-motor symptoms associated with the disease process, patients become increasingly reliant on formal and informal caregivers to assist with daily activities [14], a scenario that is closely associated with increasing caregiver distress [15] and transition to nursing home placement [16,17]. In 2011, 5% of permanent residents living in residential aged care facilities in Australia had a diagnosis of PD [18] and at $AUD236.0 million, aged care represented 59% of the health system costs for PD [13].…”

Rivastigmine in the Treatment of Dementia Associated with Parkinson’s Disease: Effects on Activities of Daily Living

“…However, we are not aware of ADL scales with better psychometric properties in PDD. Nevertheless, the current analysis provides encouraging evidence that rivastigmine treatment may help some individuals maintain basic and higher level functioning in ADLs, and thereby improve the quality of life of patients and their caregivers [14,32] . Additional prospective studies are warranted in order to confirm this hypothesis.…”

Stressors identified by caregivers for veterans with Parkinson’s disease

“…After a review of validated PD caregiving instruments [1,15,18,20] , the researchers found none that integrated all the required components for this study. The preferred survey was one devised for a mailed caregiver study, contained specific questions unique to this sample of participants, and was simple and short in design so that caregivers would be more likely to complete the questionnaire.…”

“…The relationships among the veterans and family members are affected early in the disease process and as the disease advances, the family caregivers increasingly assume a multitude of daily tasks that become as essential to the patient's well-being as other treatment methods [1][2][3] . Nurses relate to these PD caregivers on a regular basis and make assumptions about their stressors and needs often without the advantage of subjective information that would promote individualized care.…”