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Dementia and Intersectionality: Exploring the Experiences of Older People with Dementia and Their Significant Others

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Dementia and Intersectionality: Exploring the Experiences of Older People with Dementia and Their Significant Others Dementia and Intersectionality: Exploring the experiences of older people with dementia and their significant others WENDY HULKO UNIVERSITY OF STIRLING Department of Applied Social Science Thesis submitted for the degree of Doctor of Philosophy November 2004 Declaration I declare that none of the work contained within this thesis has been submitted for any other degree at any other university. The contents found herein have been composed by the candidate, Wendy Hulko. i Acknowledgements This enormous piece of work is the intellectual property of one person whose mind, body, and soul shared space with this thesis for three years. Many people contributed to both the process and the outcome, however, and I would like to acknowledge the roles they played in getting me through to the end…with my smile and whimsical attitude intact. First of all, there are my ‘significant others’ – the family members and close friends who have given me so much unconditional love, respect, and support throughout my life, who kept me going with their unwavering faith in my ability to do this thing, and who knew when to leave me alone and when to step in. My parents Alan and Sandy Hulko, sisters Shelley and Alanna Hulko, and uncle Lee Hulko; close friends Yvette Scrivener, Kimi Webber, Robin Irwin, Heidi Staseson, Michol Hoffman, Suzanne Scher, and Marsha Griffith; and the others who reminded me that ‘that which does not kill you makes you stronger’ (Nietzsche). A special thank you to my dear friends Max Todd and Nancy Gioia for sharing food, laughter, stories, and the joy of babies on so many occasions, usually at a moment’s notice. Next, I would like to thank my supervisors: Sue Tester and Jim Valentine, for the wise words, confidence in my abilities, enthusiasm about my work, intellectual stimulation, academic rigour, sound advice, and gentle manner. Thank you as well to Cherry Rowlings for input during the first year of my PhD. Two special women who started out as social workers and became strong advocates for people with dementia and leaders in the dementia field – one in Ontario and the other internationally – influenced my decision to do a PhD and to do it at Stirling, and have inspired me tremendously; for that, I would like to acknowledge my dementia gurus: Mary Marshall and Mary Ann Chang. I also would like to thank Judy Globerman for being a wonderful mentor and an excellent reference (funding, PhD programs, academic positions); and Stephen Katz for sharing his brilliant insights and challenging me to think harder. A special acknowledgement is owed to Shari Brotman – fellow feminist gerontologist, anti-oppression social worker, grounded theorist, mutual admiration society member, and dear friend – for collaborating, challenging, validating, encouraging, innovating, role modelling, weeping, and laughing. I would like to thank everyone affiliated with the University of Stirling who was a supportive colleague during my time there, particularly other researchers (students and fellows) in the Department of Applied Social Science, and Alison Giles in Information Services who rescued my thesis at a critical juncture when I thought all my work had been lost. A big thank you goes out to my office mates ii for all the intellectual stimulation, emotional support (to the best of their British abilities☺), social interaction, and fond memories of Scotland - Ailsa Cook, Jacqueline Davidson, Louise McCabe, Jane Robertson, Paul Rigby, Rhoda McRae, and Nicola Illingworth. Thanks especially to Ailsa, Jane, Louise, and Jacqueline for all the constructive criticism and validation of my ideas. A thesis cannot be initiated nor completed without adequate financial support and I was very fortunate to receive good funding throughout my doctoral studies from the following sources: Department of Applied Social Science for my departmental studentship and funding for field research (travel and office expenses) and attendance at conferences; the Overseas Research Student Award scheme for assistance with tuition fees; the University of Stirling Alumni Project Fund for field research expenses (interpretation and photography); and Alan and Sandy Hulko for help with the costs of living (trips across the pond, vacations, line of credit payments, new laptop), and all that social capital. The Alzheimer Society of Ontario sponsored this thesis through gifts-in-kind such as office space and materials for the duration of the field research and collaborating on the focus groups and feedback sessions; I would like to thank Samantha McDonald in particular for her contributions. The Alzheimer Society of Peterborough and Area supported this research as well and for that I am grateful to the entire organization and to Sandy May especially. Although the other recruiting site cannot be named, I am very appreciative of the hospital in Toronto and the staff of the program for their involvement in this research, especially for approving grounded theory, process consent, and photography. The penultimate thank you goes to my finish line saviours: Jane Birkbeck and Suzanne Scher for proofreading, editing, motivating, and keeping me focused on the small steps and the big picture; and my new friends in Kamloops who provided healthy distractions and good company, especially Josette for trail- running with me during the crunch time. This thesis would not have happened without this phenomenon called dementia and all the people who are living with it. I offer a heart-felt thank you and a pledge to keep advocating on behalf of people with dementia to: Grandpa Emery who introduced me to Alzheimer Disease at an age when I was unable to comprehend what was happening to him; all the people with dementia with whom I have worked over the years in British Columbia and Ontario, especially Medora who was the absolute best companion on night shift rounds; and, lastly and certainly most importantly, my research participants that you will be meet as Jim Heather, Joe Brown, Bosse Knudsen, Ester Hernandez, Angela Huggins, Julianna Molnar, Gus Holden, and Nancy Matheson. Thank you all for sharing your experiences and opening your lives to ‘the memory girl’. iii Abstract The aim of this thesis is to demonstrate that new and varied views of dementia surface when the concept of intersectionality is applied to dementia research; and that these perspectives pose challenges to our assumptions about what it is like to have dementia. Grounded theory research from a feminist and anti- oppression perspective was undertaken to explore the question of the relationships between older people‘s experiences of dementia and the intersections of gender, class, ‘race’, and ethnicity. During nine months of field research in Canada, interviews, participant observation, photography, and focus groups were undertaken with eight older people with dementia and their significant others. The participants ranged from multiply marginalized to multiply privileged on the basis of their ‘race’, ethnicity, gender, and class. The grounded theory arising from this research explains the complex nature of the relationships between the subjective experiences of older people living with dementia and the intersections of ethnicity, ‘race’, class, and gender. I argue that there is a connection between social location and lived experiences of dementia; and that these relationships can be observed across and within the categories of experiencing, othering, and theorising. Experiencing captures the diversity of older people’s experiences of dementia, which range from ‘not a big deal’ to ‘a nuisance’ to ‘hellish’: these views are associated with social location, with the multiply privileged older people holding the most negative views of dementia and the multiply marginalized older people dismissing the significance of dementia. Othering refers to the marginalisation to which people with dementia are subject: it is shown to be a marked feature of life with dementia and to be connected to social location, with the multiply privileged people being othered more often as a result of their dementia status; the more marginalised participants demonstrating resilience (as an acquired characteristic); and all being subject to both othering practices and enabling behaviours enacted by members of their social worlds, such as their significant others. The theorising category refers to people with dementia being active meaning makers who theorise about dementia: the outcome of this intellectual activity is shown to be related to social location, with the most privileged participants being the only ones to view dementia as a brain disease; and all others making strategic use of the normal aging theory to avoid marginalisation due to dementia. The result of the theorising done by older people with dementia is a dialectical theory of dementia that positions dementia as a bio-psycho-social phenomenon, disrupts the false dichotomy between normal and pathological, and integrates emic and etic perspectives on dementia. iv Table of Contents Declaration .......................................................................................................... i Acknowledgements .............................................................................................ii Abstract ..............................................................................................................iv List of Figures and Tables ................................................................................ viii Chapter - 1 Introduction ..............................................................................
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