Research That Matters (January 17 - 20, 2008)

Purpose: The majority of research on caregivers of individuals with dementia has focused on care during the early and middle stages of the disease. Minimal attention has been given to caregivers at the end-stages and even less attention to the role of hospice with caregivers as they await the death of the care recipient. For caregivers of individuals with other illnesses, hospice care is a key support system prior to and after the death. Less than seven percent of individuals in hospice have a diagnosis of dementia (Jennings, 2003), leaving many caregivers without the pre-and post-death support that hospice could provide. For the small group of caregivers who are able to receive hospice support, little is known about their experiences with this service and how it aided in the care of the patient with end-stage dementia. The purpose of this qualitative study was to examine the experiences of caregivers who were utilizing hospice care with the care recipient prior to death. Twenty-seven caregivers from a rural, Midwestern state participated in the study. Methods: Qualitative methodology, based on the tenets of ethnomethodology, was used for this study. Ethnomethodology is designed to determine the ways in which people engage in decision making, communicating and reasoning, as well as how they shape and interpret their life experiences and social realities (Holstein & Gubrium, 2005). Data were collected from the caregivers through multiple, in-person interviews, observations, and chart reviews of the hospice records. Data were analyzed through a series of steps, including line by line coding and constant comparison, to describe the experiences and perspectives of the caregivers. Three researchers analyzed the data independently and then compared their analyses to ensure strong inter-rater reliability. The results were then presented to two outside qualitative consultants for feedback. Results: From the data emerged four distinct portraits of end-stage dementia caregivers: 1. Disconnected caregivers; 2. Questioning caregivers; 3. All-consumed caregivers; and 4. Reconciled caregivers. The caregivers in each portrait differed in how they viewed their current relationship with the care recipient, their involvement with caregiving, their preparedness for care recipient's death, and their desired involvement from hospice. It was determined the caregivers did not did not move between different portraits during the time they were receiving services from hospice; instead their remained in the same portrait until the death or discharge of the care recipient from hospice care. Implications for Practice and Research: Caregivers of individuals with end-stage dementia respond to the final stages of the disease and the assistance offered from hospice providers in distinct ways. Recognizing the differences in the caregivers' responses to the final stages of dementia will assist social workers in better tailoring their assessment and intervention plans to the caregivers' needs. References Holstein, J.A. & Gubrium, J.F. (2005). Interpretive practice and social action. In The Sage handbook of qualitative research. N. Denzin & Y. Lincoln (eds). Thousand Oaks, CA: Sage Publications. Jennings, B. (2003). Hospice and Alzheimer's disease: A study in access and simply justice. Hastings Center Report Special Supplement, 33, S24-S26.