Caregivers' Experiences with Nursing Home Placement of Their Family Member with Alzheimer's Disease

Sunday, November 1, 2009

Janice L. Palmer, MS, RN
School of Nursing, Saint Louis University, St. Louis, MO

Learning Objective 1: describe the experiences of caregivers who place their family member with Alzheimer’s disease in the nursing home.

Learning Objective 2: list two ways to support caregivers who place.

Problem:  It is estimated that up to 50% of individuals with dementia are placed in a nursing home by their caregivers.  Nursing home placement is associated with ongoing caregiver burden and the emotions of depression, grief, and anxiety.  Although the emotions of caregivers have been described and quantified, little is known about the lived experience of familial caregivers.  Purpose: To describe the experiences and practices of spouse and adult child caregivers who place their relative with dementia of the Alzheimer’s type (DAT) in the nursing home. Theoretical Framework: Interpretive phenomenology is the philosophical approach and method used to explore the caregiver’s experiences of placing their relative with DAT. Methods: Five interview guides consisting of broad open-ended questions were the primary mode of data collection and included the topics of: Disease history, relationships, story of placement, post placement, and discharge/ bereavement. Nine spouses and six adult daughters who had admitted their relative with DAT to a nursing home within the previous 12 months participated in this study. Results: Some themes identified in the study include: 1) Loss and suffering.  Caregivers experience profound loss prior to placement but loss and related suffering, particularly for spousal caregivers, escalates with placement, 2) Struggling to maintain the personhood of their family member. Caregivers work to maintain the dignity of their family member and to communicate their family member’s needs and preferences to others, and 3) Loss of or lack of a nursing voice. Study findings suggest that family members may not know what nurses and nurse practitioners in long-term care do. Conclusion: Findings suggest that caregivers need support, reassurance, and ongoing communication before and after nursing home placement of the person with DAT.