Living with a person who has Parkinson's disease: The spouse's perspective by stage of disease

Julie H. Carter, Barbara J. Stewart, Patricia G. Archbold, Iku Inoue, Jeana Jaglin, Meg Lannon, Elke Rost-Ruffner, Marsha Tennis, Michael P. McDermott, Donna Amyot, Ruth Barter, Lisa Cornelius, Carol Demong, Judith Dobson, Jan Duff, Judi Erickson, Nita Gardiner, Lisa Gauger, Peggy Gray, Bernice KaniganBarbara Kiryluk, Paula Lewis, Kathie Mistura, Teri Malapira, Mary Pay, Carol Sheldon, Linda Winfield, Kathy Wolfington-Shallow, Kim Zoog

Research output: Contribution to journalArticlepeer-review

205 Scopus citations


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 (1O 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.

Original languageEnglish (US)
Pages (from-to)20-28
Number of pages9
JournalMovement Disorders
Issue number1
StatePublished - 1998
Externally publishedYes


  • Caregiver strain
  • Parkinson's disease
  • Spousal caregiving

ASJC Scopus subject areas

  • Neurology
  • Clinical Neurology


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