Movement zyxwvutsrqponmlkji Disorders zyxwvutsrqponmlk Vol. 13, No. I, zyxwvutsrqponmlkjihgfedcbaZYXWVUTS 1998, pp. 20-28 zyxwvutsrqpo 0 1998 Movement Disorder Society Living With a Person Who Has Parkinson's Disease: The Spouse's Perspective by Stage of Disease Julie H. Carter,"2 Barbara J. Stewart,2 Patricia G. Archbold,2 Iku Inoue,2 Jeana Jaglin,3 Meg Lannon; Elke Rost-Ruffner,' Marsha Tennis,6 Michael P. M~Derrnott,~ Donna Amyot,' Ruth Barter: Lisa Cornelius," Carol Demong," Judith Dobson," Jan Duff,I2 Judi Erickson,13 Nita Gardiner; Lisa Gauger,lg Pe y Gray,14 Bernice Kanigan," Barbara Kiryluk,16 Paula Lewis,17 Kathie Mistura,I8 Teri Malapira, zyxwvutsrq Ff Mary Pay,20 Carol Sheldon,21Linda Winfield,22 Kathy Wolfington-Shallow,23 Kim ZOO^,^^ and the Parkinson Study Group Members zyxwvutsrqpo of the Parkinson Study Group: 'Department of Neurology and 2School of Nursing, Oregon Health Sciences University, Portland, OR; 3Rush-PresbyteriadSt. Luke's Medical Center, Chicago, IL; 4Brown University, Providence, RI; 5University of Virginia, Charlottesville, VA; 'Massachusetts General Hospital, Boston, MA; 7University of Rochester, Rochester, NY; 'McGill University, Montreal, PQ; 9Uiiiversity of Kansas, zyxwvut KS; "University of Calgary Medical Clinic, Calgary, AB; " University of Iowa, Iowa City, IA; I2Toronto Western Hospital, Toronto, ON; 13University of Nebraska Medical Center, Omaha, NE; 140ttawa Civic Hospital, Ottawa, ON; "University of Saskatchewan, Saskatoon, SK; I6St. Luke's Hospital, Denver, CO; 7Cal~ornia Parkinson's Foundation, Sunnyvale, CA; '8Siiiai Hospital of Detroit, Detroit, MI; "University of South Florida, Tampa, FL; University of California at San Diego, San Diego, CA; "University of Miami, Miami, FL; 22Columbia University, New York, NY; 2'University of Pennsylvania, Philadelphia, PA; and 240hio State University, Columbus, OH 20 Summary: The objective of this study was to examine the experience of spouses caregiving for their spouse with Parkin- son'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 caregiv- ing tasks tripled by stage 4/5. Negative changes in lifestyle plus decreases in predictability in caregivers' lives increased sig- nificantly in late-stage disease (p < 0.05). Caregiver character- istics 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 re- lationship as perceived by the caregiving spouse, declined be- ginning at stage 2. Caregiver strain is experienced across all stages of PD and accumulates significantly as the disease pro- gresses. This study defines types and amounts of strain by stage of disease, which will be helpful in designing formal interven- tion trials to provide more effective help for spouse caregivers. Key Words: Spousal caregiving-Caregiver strain-Parkin- son's disease. Families are the most valuable and also the most vul- nerable resource we have for the care of people with Parkinson's disease (PD). With the diagnosis of PD comes the role of family caregiving. The work of care- giving is demanding and ever-changing, increasing as the ~ Received September 23, 1996; revision received April 29, 1997. Accepted June 18, 1997. Address correspondence and reprint requests to J. H. Carter at Or- egon Health Sciences University, L-226, 3181 SW Sam Jackson Park Road, Portland, OR 97201-3098, U.S.A. disease progresses and disability becomes more pro- nounced. Although a great deal of research has been conducted on PD, the emphasis has been primarily on the person with the disease and the disease process rather than on family caregivers. The study reported here there- fore focused on the experience of families, specifically spouse caregivers, of people with PD. Because caregiver strain' (also termed burden2 or stress3) is the variable that one would expect to change most in a progressive debilitating disease like PD, we 20