Role Change Experienced by Family Caregivers of Adults with Alzheimer's Disease: Implications for Occupational Therapy

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.