Theresa A Allison1,2, Rafael T Balbino3, Kenneth E Covinsky1. 1. Division of Geriatrics, Department of Medicine, University of California, San Francisco, CA, USA. 2. Department of Family & Community Medicine, University of California, San Francisco, CA, USA. 3. Baptist AgeWell Center for Senior Health, Jacksonville, FL, USA.
Abstract
BACKGROUND: of the estimated 1.4 million residents of US nursing homes, over half have dementia. In the final stages of dementia, caregiving is complicated by the inability of care recipients to speak intelligibly or express their needs. AIM: to examine the ways in which a nursing home end-stage dementia special care unit (SCU) functioned as a caring community for people near the end of life. RESEARCH DESIGN AND METHODS: a qualitative, ethnographic case study was conducted in a highly-regarded SCU. Over 175 hours of scheduled activity observations were completed over 2 years, bolstered by 30 hours of caregiving observations on the end-stage dementia unit and 19 interviews with SCU carers. Inductive coding was completed independently by two researchers, emerging themes reconciled by consensus, and qualitative analysis conducted iteratively until the endpoint of thematic saturation. FINDINGS: on the SCU, employees and volunteers fostered relationships based upon a model of family. They formed a caring community that included professionals, volunteers, friends and family. Relationships were supported through (1) the use of reminiscence to evoke intact long-term memories, (2) the use of verbal communication long after care-recipients could no longer speak and (3) the use of intentional nonverbal communication, including daily music, pet visits, and sensory stimulation. CONCLUSIONS: through detailed examination of daily life, this study identified articulated beliefs and observable behaviour through which to develop relationship-centred care in the context of end-stage dementia. The caring community offers primary source data for the development of mid-level theory and the generation of new hypotheses.
BACKGROUND: of the estimated 1.4 million residents of US nursing homes, over half have dementia. In the final stages of dementia, caregiving is complicated by the inability of care recipients to speak intelligibly or express their needs. AIM: to examine the ways in which a nursing home end-stage dementia special care unit (SCU) functioned as a caring community for people near the end of life. RESEARCH DESIGN AND METHODS: a qualitative, ethnographic case study was conducted in a highly-regarded SCU. Over 175 hours of scheduled activity observations were completed over 2 years, bolstered by 30 hours of caregiving observations on the end-stage dementia unit and 19 interviews with SCU carers. Inductive coding was completed independently by two researchers, emerging themes reconciled by consensus, and qualitative analysis conducted iteratively until the endpoint of thematic saturation. FINDINGS: on the SCU, employees and volunteers fostered relationships based upon a model of family. They formed a caring community that included professionals, volunteers, friends and family. Relationships were supported through (1) the use of reminiscence to evoke intact long-term memories, (2) the use of verbal communication long after care-recipients could no longer speak and (3) the use of intentional nonverbal communication, including daily music, pet visits, and sensory stimulation. CONCLUSIONS: through detailed examination of daily life, this study identified articulated beliefs and observable behaviour through which to develop relationship-centred care in the context of end-stage dementia. The caring community offers primary source data for the development of mid-level theory and the generation of new hypotheses.