The Experiences of People Living with Dementia in Acute Care Environments

Abstract

Increased life expectancy and the population of seniors are growing rapidly which comes with an expected rise in acute hospital care needed. Nearly one quarter of hospital in-patients have dementia and caring for this population will be a significant part in the provision of health care services. The current knowledge base is through the perspectives of health care professionals and shows that the hospital culture, and environment, produces negative effects for people with dementia who are hospitalized. The effects of the stigma of dementia have not been studied in this environment specifically. The aim of this research was to explore the experiences of people with dementia in the acute care environment, paying particular attention to stigma and exploring if, and how stigma was a factor in people’s experiences. This qualitative study employed hermeneutic phenomenology that focused on the lived experience from the perspectives of people with dementia. Semi-structured interviews, and a focus group discussion was conducted with participants that included two men with early dementia and their care partners, one woman with early dementia, and two care partners caring for their spouses who were residing in long-term care facilities. The central overarching theme revealed throughout the continuum of care was stigma related to both age and dementia. Additionally, the findings reveal stigma to be present in system issues and the interpretation of stigma is very individual. Finally, enhancing care, revealed the critical role that advocacy played and how the culture of hospital care was understood. The use of the four structures of phenomenology showcased how the body, the hospital, relationships, and sense of time, interacted in making meaning in the acute care experience of the participants. The findings revealed unique knowledge provided from detailed experiences of the participants where illness, age and dementia, influenced perceptions of stigma, and how stigma further impacts the perception of care and ultimately, how it is experienced and understood, by people with dementia and their care partners. These insights may provide areas where stigma can be tackled through the perspectives of those being stigmatized and draw much needed attention to facilitating change in the approach to care within the acute care system for people with dementia.