Over 70% of the estimated 4 million Americans with Alzheimer's disease or a related disorder (ADRD) live at home, with family and friends providing 75% of their care. In addition, half of nursing home patients are estimated also to have ADRD. Research has established that caregivers experience stress and, in time, may choose to institutionalize their relative. Timing of institutionalization can have consequences for patients, families, and society. Premature placement may be associated with unnecessary stress, negative health outcomes for patients, and increased costs for society. Delaying placement can have negative consequences for caregivers and for patients. Although patient and caregiver characteristics that predict placement have been identified and some studies have examined the placement experience of frail elders, little is known about how family caregivers of relatives with ADRD decide to place their relative or how formal service providers participate in the decision.
The specific aim of this study is to describe and analyze the process of placement decision-making of family caregivers of relatives with ADRD, including the participation of formal service providers (e.g. nurses, social workers, case managers, physicians, counselors, etc.) in the decision. This longitudinal qualitative descriptive research design will include a non-probability sample of family caregivers (N = 40) that are in the process of deciding to place their relative in institutional care and their involved formal service providers. A grounded theory approach (Strauss & Corbin, 1990, 1998) will be the primary method used for data collection and analysis. A combination of qualitative and quantitative data will be collected and analyzed to achieve the purpose of this study. Findings will be used to understand the caregiver's experience throughout the placement process including how service providers influence the decision and what behaviors are found to be supportive of caregivers. The research will result in theoretical refinement, education of formal service providers, and development of an intervention project directed toward primary and secondary prevention of family caregiver stress associated with institutional placement of their relative.
