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The lived experience of family caregivers who provided end-of-life care to a relative with advanced dementia

  • Author / Creator
    Peacock, Shelley
  • With aging of the baby boomer population, older adults living longer, and no known cure for dementia, the prevalence of dementia in older adults will inevitably rise. Dementia is a terminal illness, although it may not be recognized as such. Family caregivers to persons with dementia provide invaluable care, often at the expense of their own health and well-being. Over the past two decades there has been an abundance of research that examines the various and complex aspects of caring for a relative with dementia. However, there is a paucity of research that has been conducted on the experiences of family caregivers providing end-of-life care. The conceptual framework that guides this research is based on the work of Martin Heidegger. A thorough search of the literature reveals that the main themes of this end-of-life experience studied to date are the experience of grief and loss, and the manifestations of depression in family caregivers. A number of gaps in the literature remain that limit our understanding of the end-of-life care experience. The purpose of the present study is to begin to address this neglected area of research. As a result, the research question is: “What is the meaning of the lived experience of family caregivers who provided end-of-life care for a relative who died with advanced dementia?” This question was addressed using an interpretive phenomenology based on the work of Munhall. The study utilized a purposeful sample of family caregivers (n = 11) whose relative with dementia died in the last year. Two to three in-person, unstructured interviews were completed with each participant as a way to glean an understanding of their experiences and offer opportunities for the participant to verify their end-of-life caregiving story. A total of 27 interviews were recorded and transcribed verbatim. Transcripts were hermeneutically analyzed in order to create individual narratives for each participant, reveal the essence of this experience, discuss the influence of the life worlds, consider the taken for granted, and generate an overall study narrative. These findings reveal the complex nature of the end-of-life caregiving experience with dementia.

  • Subjects / Keywords
  • Graduation date
    2011-06
  • Type of Item
    Thesis
  • Degree
    Doctor of Philosophy
  • DOI
    https://doi.org/10.7939/R32W6Q
  • License
    This thesis is made available by the University of Alberta Libraries with permission of the copyright owner solely for non-commercial purposes. This thesis, or any portion thereof, may not otherwise be copied or reproduced without the written consent of the copyright owner, except to the extent permitted by Canadian copyright law.
  • Language
    English
  • Institution
    University of Alberta
  • Degree level
    Doctoral
  • Department
    • Faculty of Nursing
  • Supervisor / co-supervisor and their department(s)
    • Duggleby, Wendy (Faculty of Nursing)
    • Koop, Priscilla (Faculty of Nursing)
  • Examining committee members and their departments
    • Raffin-Bouchal, Shelley (Faculty of Nursing, University of Calgary)
    • Hunter, Kathleen (Faculty of Nursing)
    • Triscott, Jean (Faculty of Medicine)
    • Lui, Lili (Occupational Therapy)