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Living with a person who has parkinson's disease: The Spouse's perspective by stage of disease
Author(s) -
Carter Julie H.,
Stewart Barbara J.,
Archbold Patricia G.,
Inoue Iku,
Jaglin Jeana,
Lan Meg,
RostRuffner Elke,
Tennis Marsha,
McDermott Michael P.,
Amyot Donna,
Barter Ruth,
Cornelius Lisa,
Demong Carol,
Dobson Judith,
Duff Jan,
Erickson Judi,
Gardiner Nita,
Gauger Lisa,
Gray Peggy,
Kanigan Bernice,
Kiryluk Barbara,
Lewis Paula,
Mistura Kathie,
Malapira Teri,
Pay Mary,
Sheldon Carol,
Winfield Linda,
WolfingtonShallow Kathy,
Zoog Kim
Publication year - 1998
Publication title -
movement disorders
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 3.352
H-Index - 198
eISSN - 1531-8257
pISSN - 0885-3185
DOI - 10.1002/mds.870130108
Subject(s) - spouse , disease , parkinson's disease , psychology , gerontology , preparedness , clinical psychology , perspective (graphical) , depression (economics) , medicine , artificial intelligence , sociology , anthropology , political science , computer science , law , economics , macroeconomics
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.