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LIVING THE “FORGETTING EXPERIENCE:” AN EXPLORATORY OF THE LIVED EXPERIENCE OF MCI AMONG OLDER DISABLED VETERANS. by CHRISTINE SCHNEIDER Submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy Department of Sociology CASE WESTERN RESERVE UNIVERSITY August, 2020 CASE WESTERN RESERVE UNIVERSITY SCHOOL OF GRADUATE STUDIES We hereby approve the dissertation of Christine Schneider Candidate for the Doctor of Philosophy degree* Committee Chair Eva Kahana, Ph.D. Committee Member Tim Black, Ph.D. Committee Member Gary Deimling, Ph.D. Committee Member Denise Kresevic, PhD Date of Defense May 12, 2020 We also certify that written approval has been obtained for any proprietary material contained therein. 2 Dedication & Acknowledgements For my dad: I was finally able to ask the right questions. I miss you Pops. To my mom and family: I would not be here today without each of you. Mom, thank you for your support and your shoulder over the years. To my entire family, I love you all very much. Last, to my committee: Eva Kahana, Ph.D., (Chair), Tim Black, Ph.D., Gary Deimling, Ph.D., and Denise Kresevic, PhD, your ongoing support motivation and critical feedback was instrumental in completing this journey. 3 Table of Contents Abstract 7 Chapter 1: Introduction Purpose of the study 8 MCI and the Lived Experience 10 Brief Introduction MCI and Sociological concepts 11 Chapter 2: Theoretical Approaches Stress Paradigm: An Integrating Approach to Predicting Psychological Stress 19 Labeling Theory and Stigma 28 Illness Experience & the Demented Self and Identity 33 Approaches to the Study of Identity 35 Chapter 3: Methodology Constructionist Grounded Theory 43 Recruitment and Sample 50 Research Setting and Semi Structured Interview 53 Data Analysis 55 Limitations 58 Chapter 4: The Experience and Realization of Forgetting 62 Awareness 64 Symptom awareness (Lay-appraisal) and Diagnosis 66 Reactions to Awareness 72 Acceptance 78 Anger, Frustration and Fear 85 Chapter 5: Negotiation and Adaptation: Social Support Changes and Coping 93 Social Support Changes (Formal and Informal) 98 Frustration toward Social Support Changes 106 Coping Strategies 115 Problem and Emotion-focused 120 Chapter 6: Race, Veteran, Masculinity and the Resistant and Persevering Identity 131 Masculinity and Resistance to Dependency 144 Driving Cessation 151 Masculinity and Perseverance (Hardiness, Resilience and Successful Coping) 168 Chapter 7: Discussion and Conclusions 185 Appendices (Interview Guide, Consent forms and Brochures) 226 Works Cited 241 4 List of Tables Table 1: Sample Demographics 52 Table 2: Coping Strategies for Care Getters and Receivers 118 5 List of Figures Figure 1. Modified Version of Kahana’s Proactivity Model 20 6 Living the “Forgetting Experience:” An Exploratory Inquiry of the Lived Experience of MCI Among Older Disabled Veterans Abstract by CHRISTINE M. SCHNEIDER Life expectancy has expanded to a point that most of us will experience MCI ourselves, or through a loved one. The idea that MCI reflects the loss of one’s ability to think can be devastating to a person’s self and identity, impacts social support and influences psychological distress. In order to understand how MCI affects individuals, we have to ask the individuals who are directly experiencing memory changes to understand the lived experience of MCI. The domains explored in this study fit in the framework of the stress paradigm (Pearlin et al., 1989) as they consider illness related stressors, social supports, coping and psychological well-being outcomes. Sampling and Methods: This study used a sample of older disabled veterans who have recently been diagnosed with MCI. Once identified, patients were approached in clinic, or by phone to obtain consent for participation in a semi-structured interview. The semi- structured interviews specifically explored the following domains: awareness, impact of diagnosis, social support, and coping with psychological distress. Findings: The lived experience of MCI is a multi-faceted stress and coping process. For each participant, the lived experience had commonalities and variations. All participants experienced lay appraisal that their forgetting was non-normative, yet all described the label of MCI at diagnosis as qualitatively different. The emotional reaction to the diagnosis ranged from validation to devastation. Yet the majority of this sample had accepted their diagnosis, even though they experienced anger, fear and frustration with changes in their memory. Overall, social support was a positive theme for this sample. Yet, initial changes in social support sometimes resulted in frustration with increased informal and formal support. Additionally, the majority of veterans had begun to utilize proactive coping with their memory and diagnosis. Interpretative analysis resulted in an emergent theme of late life masculinity. Some respondents exhibited more traditional masculine ideals that were articulated in their resistance to dependency. Others showed that in later life they might adopt new valued masculine roles. This was seen in the connection to the overall successful coping and perseverance in these veteran’s stories. 7 Chapter 1: Introduction Research Purpose, Significance and Specific Aims The purpose of this research is to provide an in-depth understanding of how individuals who are diagnosed with MCI cope with the stress of that diagnosis in day-to- day living. Specifically, this research will address the impact of awareness, diagnosis, reappraisal of self and identity, their perception of current increased social support and coping strategies used to negate the distress of MCI. Understanding the areas that individuals share experiences, or differ in experiences, allows insight into increasing wellbeing- even when experiencing chronic hardship. Not only is this research critical to our understanding of this process in order to increase psychological wellness among vulnerable populations, for me it was also personal. My grandparents on my father’s side were both diagnosed with Alzheimer’s while I was young. I remember visiting them in the nursing home and wondering why they did not remember my dad or me. I remember seeing the agony in their eyes as they struggled to talk and I remember my dad trying to explain how people can completely forget their lives. I remember my dad looking at me that day and telling me that he never wanted to be in a nursing home… no matter what. I was about 12 years old and I did not truly comprehend the situation, but I do remember promising my dad I would never let him go to a nursing home. My dad was my best friend growing up. We spent many hours fishing and talking about various aspects of life. He was a thinker and I can remember him saying to me, “I don’t ever want to lose the ability to think. I used to think that having longevity in life was a good thing… now I am not so sure.” At the time, I did not understand what he 8 meant. However, as I have gotten older, I am beginning to understand the fear that he had about losing his capacity to think. He experienced the illness through his parents and unfortunately, I experienced this with my dad, as he got older. As a sociologist, I believe that some of his fear stemmed from the medicalization of cognition and the implication it meant inevitable decline. I also believe there are many things that may alleviate some of that fear and allow individuals to age gracefully regardless of cognitive capacity, at least in the earlier or moderate stages of MCI. One of the most regretful times in my life was after my dad was diagnosed with dementia. I knew already – the signs were there for many years. I was in the doctor’s office when he was given the diagnosis and I experienced his reaction first hand. I watched the negative effect the diagnosis had on his self-confidence and instead of asking him how he felt – we ignored it. We tried to pretend everything was normal. The worst thing was the fact that nothing was normal again. The way we interacted was socially awkward at times, overly critical at others. It is hard to imagine how my dad felt about this. He had to have felt the awkwardness too. Looking back, I wish I had sat down with him to discuss things honestly, and inquired about his opinions. We did this with all other topics. We had open and honest conversations about his cancer- that ultimately took him from me. Why couldn’t we do that with his memory? Unfortunately, I never had the chance to ask. He was diagnosed with stage 4 lymphoma and the last years of his life were spent battling that. I am sure his last years would have been less frustrating if I would have taken the time to get the answers, only he could provide: how living with MCI in everyday life truly is. He died while I was a graduate student. I was a nontraditional student because after high school, I joined the 9 United States Navy and was later discharged from duty with a disability. Since my discharge, I have received my healthcare at the Cleveland Veteran’s Administration Medical Center (VAMC). These two groups- disabled veterans and people experiencing MCI are very important to me, for personal and professional reasons. Little research has been done in either of these areas because these populations are viewed as vulnerable and research inclusion is very difficult. As a critical thinker, with a significant family history of cognitive problems, I am terrified to think of a future where I have trouble remembering my past. My hope for this research is to aid in the understanding of how the lived experience of an illness can be understood from the person’s viewpoint. I wish to add to the growing acceptance of qualitative MCI research and address the underutilization of both cognitively disadvantaged persons and the disabled veterans in research.

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