ATHABASCA UNIVERSITY PERCEPTIONS OF PERSONHOOD AND mariko liette sakamoto a thesis submitted to the

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  • ATHABASCA UNIVERSITY

    PERCEPTIONS OF PERSONHOOD AND THE EARLY ONSET DEMENTIA EXPERIENCE

    “I’M STILL HERE”

    BY

    MARIKO LIETTE SAKAMOTO

    A THESIS

    SUBMITTED TO THE FACULTY OF GRADUATE STUDIES

    IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE

    DEGREE OF MASTER OF NURSING

    FACULTY OF HEALTH DISCIPLINES

    CENTRE FOR NURSING AND HEALTH STUDIES

    ATHABASCA, ALBERTA

    OCTOBER 2015

    ©MARIKO LIETTE SAKAMOTO

  • PERCEPTIONS OF PERSONHOOD ii

    The future of learning.

    Approval of Thesis

    The undersigned certify that they have read the thesis entitled

    Perceptions of Personhood and the Early Onset Dementia Experience: “I’m Still Here”

    Submitted by

    Mariko Sakamoto

    In partial fulfillment of the requirements for the degree of

    Master of Nursing

    The thesis examination committee certifies that the thesis and the oral examination is approved

    Co-Supervisors:

    Dr. Sharon Moore Athabasca University

    Dr. Steven Johnson

    Athabasca University

    Committee members:

    Dr. Carla Wells Memorial University

    Dr. Diane Buchanan Queens University

    October 21, 2015

  • PERCEPTIONS OF PERSONHOOD iii

    Acknowledgements

    I must begin by acknowledging the participants of this study. It was a privilege to be able

    to hear their personal accounts, to capture their words and to portray their experiences of living

    with early onset dementia. I thank them all for opening up to me and for sharing their stories.

    I was very fortunate to have Dr. Steven Johnson and Dr. Sharon Moore as my co-

    supervisors. They guided me not only through the research process, but also through the process

    of self-discovery that is the graduate student’s journey. I received constant support from them

    both and I am extremely grateful – for their kindness, their encouragement and for their

    knowledgeable assistance. I would also like to acknowledge Dr. Carla Wells and Dr. Diane

    Buchanan, for their excellent support and input as members of my thesis committee.

    I thank Athabasca University and the British Columbia Nurses’ Union for funding that I

    was fortunate to receive, enabling me to not only be able to complete my research, but for also

    allowing me to take advantage of some wonderful learning experience at conferences.

    I am very fortunate in my support system of family and friends, a network of special

    people who steadfastly encouraged me along the way. Several friends read my thesis as it

    developed over time, and I always appreciated their input and suggestions. Thank you to my

    parents, Claudette and Bud, who encouraged me to pursue my studies in the first place and to my

    sister Emi, who proof read the final copy of this thesis.

    My husband Elvis and two children, Adam and Elly, always believed that I would finish

    – even when I wavered. Their unconditional love and support allowed me to take the time to

    grow outside of my role as a wife, mother and registered nurse and to begin to explore new

    facets of myself as a novice researcher, fledgling academic and developing writer. I could not

    have finished this thesis and learned so much about myself, without them.

  • PERCEPTIONS OF PERSONHOOD iv

    In memory of my mother

    Claudette Latulippe Sakamoto

    (1944-2012)

  • PERCEPTIONS OF PERSONHOOD v

    Abstract

    Early onset dementia (EOD) is dementia before the age of 65. This research study examined the

    lived experience from the point of view of four adults under the age of 65 living with dementia,

    in particular examining how these individuals perceive their own personhood. One family

    member was also interviewed. Using Interpretative Phenomenological Analysis (IPA) as the

    research approach, this study revealed that the EOD experience can be incorporated into six

    themes: A Personal Journey, Navigating the System, The Stigma of Dementia, Connecting to the

    World, A Story Worth Telling and I’m Still Here. The participants’ stories as presented via these

    six thematic threads reveal that people with EOD can have a strong sense of personhood.

    Findings from this study are discussed and situated within the current EOD body of knowledge,

    and new knowledge is presented. Implications for practice, as well as recommendations for

    future research are discussed.

  • PERCEPTIONS OF PERSONHOOD

    vi

    Table of Contents

    Approval Page…………………………………………………………………………………..ii Acknowledgements ……………………………………………………………………………iii Dedication ………..……………………………………………………………………………..iv Abstract.………………………………………………………………………………………….v Table of Contents………………………………………………………………………………..vi Chapter I – INTRODUCTION…………………………………………………………...............1 An Early Perspective..……………………………………………………………………1 Purpose of the Study. .……………………………………………………………………1

    Background……………………………………………………………………………….2 Early Onset Dementia…………………………………………………………………….3

    Researcher Positioning……………………………………………………………………4 Research Approach……………………………………………………………………….7 Chapter Summary..……………………………………………………………………….8 Chapter II – LITERATURE REVIEW………...…………………………………………………9 Overview………………………………………………………………………………….9 The EOD Context…………………………………………………………………………9 Other Challenges…………………………………………………………………………11 Perceptions of the Dementia Experience………………………………………………...11 Selfhood and Identity…………………………………………………………………….12 Personhood and Dementia……………………………………………………………….15 Why Examine the Subjective Dementia Experience?.......................................................18 Synthesizing the Research Question……………………………………………………..20

    Chapter Summary..………………………………………………………………………21 Chapter III – RESEARCH METHODOLOGY……………...………………………………..…22 Overview…………………………………………………………………………………22 Interpretative Phenomenological Analysis.……………………………………………...22 The Phenomenological Perspective……………………………………………………...23 The Hermeneutic Perspective……………………………………………………………24 The Idiographic Perspective……………………………………………………………..26 Why IPA?...........………………………...………………………………………………26 Research Design………………...……………………………………………………….29 Sampling…………………………………………………………………………………29 Inclusion Criteria………………………………………………………………………...30 Exclusion Criteria………………………………………………………………………..30 Participant Recruitment………………………………………………………………….31 Ethical Considerations.…………………………………………………………………..34 The Challenge of Consent……………………………………………………………….34 Consent Process………………………………………………………………………….36

    Data Collection…………………………………………………………………………..36 Special Considerations…………………………………………………………………..38 Arts-Based Data………………………………………………………………………….39

  • PERCEPTIONS OF PERSONHOOD

    vii

    Data Management……………..…………………………………………………………40 Data Analysis…………………………………………………………………………….40

    Chapter Summary……………………………………………..…………………………42 CHAPTER IV – FINDINGS…………………………………………………………………….43 Over