Living with a person who has parkinson's disease: The Spouse's perspective by stage of disease

Abstract

The objective of this study was to examine the experience of spouses caregiving for their spouse with Parkinson's disease (PD) and to determine whether their experiences differed by stage of disease. By using a cross-sectional design and mail questionnaire data from 380 spouse caregivers across 23 sites of the Parkinson Study Group, key caregiver variables were examined by stage of PD. Three categories of variables--caregiver role strain (10 measures), caregiver situation (four measures), and caregiver characteristics (four measures)--were analyzed by using t tests with Bonferroni correction. Specific types and amounts of role strain accumulated as the disease progressed, and they differed significantly between stages (p < 0.05). In the caregiving situation, the mean number of caregiving tasks tripled by stage 4/5. Negative changes in lifestyle plus decreases in predictability in caregivers' lives increased significantly in late-stage disease (p < 0.05). Caregiver characteristics of physical health and preparedness did not significantly differ across stages of disease. Depression was significantly higher by stage 4/5. Mutuality, the positive quality of the relationship as perceived by the caregiving spouse, declined beginning at stage 2. Caregiver strain is experienced across all stages of PD and accumulates significantly as the disease progresses. This study defines types and amounts of strain by stage of disease, which will be helpful in designing formal intervention trials to provide more effective help for spouse caregivers.

The scientific and clinical basis for the treatment of Parkinson disease (2009)

“…It is also important to consider the needs of the caregiver. Caregivers perform an average of 23 tasks per day on behalf of patients with stage III PD, and 30 for patients in stage IV/V of the disease, 962 underscoring the physical burden they bear. In the early stages, it may only be necessary to provide educational and support ser- vices.…”

“…Education provides the patient with PD and their caregiver with an understanding of their disease and a sense of control even as the disease continues to progress. 962 Conversely, patients and caregivers should be aware that in the early stages of PD, knowledge of the potential consequences of the disease can be alarming and anxiety provoking. At this stage, selective or at least filtered information is generally more helpful.…”

Quality of Life in Parkinson’s Disease – Patient, Clinical and Research Perspectives

“…In the study, questionnaires were mailed to caregivers and found that they had to perform significantly greater numbers of tasks for the patient, their burden increased and their own health became significantly poorer as their charge's disease progressed. 70 In PD management therefore, the patient's perspective is important and should be recognised. Several of the measures for assessing HRQoL in PD are designed to capture this perspective and their regular use enables better global assessment of all the symptoms that are causing difficulties and distress and informs better treatment choices.…”

Palliative care for patients with Parkinson&rsquo;s disease: an interdisciplinary review and next step model

“…Strain increases with disease severity and can lead to a decline in the physical and emotional health of the caregiver. 3 The first step for managing caregiver strain is to measure the strain severity. This can be done through standardized caregiver strain scales.…”