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Abstract
Objective. This qualitative study explored the phenomenon of role change as experienced by in-home caregivers of individuals with Alzheimer's disease.
Method. Fifteen caregivers of individuals with Alzheimer's disease received brief questionnaires, which included open-ended questions concerning their caregiving situations. Eight of these individuals volunteered for further preliminary evaluation with the Role Change Assessment (RCA) 2.0 (Rogers & Holm, 1995, 1999). The purpose of using the questionnaires and the RCA 2.0 was to familiarize the researchers with the caregiving situations of participants. Findings from the questionnaires and RCA 2.0 served as a basis for designing the questions for individualized phenomenological interviews. The phenomenological interviews with the eight volunteer participants were the primary means of data collection in this study. The goal of the phenomenological interview was to gain in-depth understanding of how the caregivers perceived their roles, and which roles had changed as a result of involvement in the caregiving experience. Field notes from caregiver support group meetings were also used as a data gathering tool.
Results. Data analysis yielded themes which describe the role changes experienced by the caregivers. These themes demonstrate that the care-givers underwent significant changes in their participation in leisure, relationship, household management, and health and wellness roles.
Conclusion. Findings suggest that caregivers experience significant life-altering role changes as a result of their caregiving responsibilities. These role changes are in important occupational performance areas, and may negatively influence caregiver quality of life. An understanding of these role alterations may allow occupational therapists to develop additional means of providing encouragement, support, and guidance when working with care-givers of individuals who have Alzheimer's disease.
Additional information
Notes on contributors
Victoria M. Hogan
Jennifer R. Johnson was a graduate student in the School of Occupational Therapy, Texas Woman's University, Houston, TX at the time of this study. She is currently employed as an Occupational Therapist at Touro Infirmary in New Orleans, LA
Debra Stewart is Lecturer, School of Rehabilitation Science, McMaster University and staff therapist at Erinoak Centre, Missis-sauga, Ontario. She is currently completing a MSc (Design, Measurement and Evaluation) at McMaster University.
Ronald L. Mace (deceased, June 29, 1998) was also affiliated with The Center for Universal Design, School of Design, North Carolina University.
Lois Rosage and Geraldine Shaw are Occupational Therapist Consultants who provide evaluations for the housing programs at the Philadelphia Corporation for Aging.
Lois Rosage and Geraldine Shaw are Occupational Therapist Consultants who provide evaluations for the housing programs at the Philadelphia Corporation for Aging.
Debbie Rand is Occupational Therapist, Beit Rivka Geriatric Rehabilitation Hospital, Petach Tikva, Israel. She completed this study in partial fulfillment of the requirements for the Master of Science degree in Occupational Therapy, School of Occupational Therapy, Faculty of Medicine, Hebrew University of Jerusalem. Her mailing address is 50 Heh B'Eyar Street, Apartment 5, Rosh Ha'Ayin, Israel, 48056.
Maureen McKenna is a Licensed Physical Therapist and Licensed Marriage and Family Therapist in California. Her Current position is: Assistant Professor of Physical Therapy, Wheeling Jesuit University, 316 Washington Avenue, Wheeling, WV 26003.
Heather Lambert was funded in part by a Health Canada NHRDP Fellowship, a REPAR Fellowship, a doctoral bursary from the Fonds de la Recherche en Santé du Quebec, and a Canadian Occupational Therapy Foundation-Royal Canadian Legion Fellowship in Gerontology.
Trish Wielandt was supported by a University of Queensland Postgraduate Research Scholarship (UQPRS).
Dr. Leigh Tooth was supported by a NHMRC Fellowship (#997032) while some of this research was undertaken.
J. D. “Herb” Herbert is Occupational Therapist, Rocky Mountain Menders LLC, 363 Pioneer Road, Lyons, CO 80540. At the time of this study, he was a graduate student, Department of Occupational Therapy, Colorado State University, Fort Collins, CO.