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Copyright by Abiola Elfreida Williams 2018 Copyright by Abiola Elfreida Williams 2018 The Dissertation, Committee for Abiola E. Williams Certifies that this is the approved version of the following dissertation: Cross-Cultural Views of Dementia: A Focus on African Americans, Asians, Caucasians and Hispanics Committee: __________________________________ C. M. Wiggs RN, PhD, CNM, AHN-BC Supervisor, Chair __________________________________ D. Martin, RN, PhD __________________________________ T. Mendez, RN-BC, PhD, CNS __________________________________ G. Brandburg, RN, PhD, GNP-BC __________________________________ S. Mbola, RN, DNP, ANP-BC ______________________________ Dean, Graduate School Cross-Cultural Views of Dementia: A focus on African Americans, Asians, Caucasians and Hispanics by Abiola Elfreida Williams, ADN BSc BSN MBA MSN Dissertation Presented to the Faculty of the Graduate School of The University of Texas Medical Branch in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy The University of Texas Medical Branch January, 2018 Dedication For your grace upon grace and mercy upon mercy I am thankful! Dedicated to all the families that have worked through and walked with their loved ones through the unpredictable journey of dementia. Acknowledgments This dissertation would not have been a reality without the guidance, encouragement and assistance of several individuals. I am indeed very thankful. My children and husband – thank you for your support. Thank you for all the comments you made when I repeatedly said, “I am in school” that made the journey easy and bearable. Omiete and Tekena for being the best children that I could ever have asked for. Love you Dr. Wiggs thank you so much for holding my hands patiently and intently, watching me grow, and letting go of my hands and I did not even know it because you equipped me for the future. Thank you for going through this journey with me even in your own journey of Loss, gains, and many joys. My heart is full of appreciation. My committee members – Dr. Brandburg, Dr. Martin, Dr. Mendez and Dr. Mbola thank you so much for giving me an opportunity to get to this point. I appreciate it. To my family – Mom, siblings, aunts and cousins. Thank you so much for cheering me on. Though we can’t pick our families, I think God was partial when he gave me mine. I would not have picked this well if I was given the opportunity. He gave me the best. To my friends – I have those that are like sisters and brothers. I love you and thank you. Thank you for not getting tired of hearing “I am working on it” when you ask me how is it going? I appreciate you all. I am so blessed to have you as friends. I can surely say I have friends and for this I am thankful. To me for sticking with it, for not giving up and for accomplishing this. Saving the best for last, I acknowledge that I would not have been capable of doing any of this without God. You are acknowledged and many thanks with a heart full of gratitude for being You. iv Cross-Cultural Views of Dementia: A focus on African Americans, Asians, Caucasians and Hispanics Publication No._____________ Abiola E. Williams, PhD The University of Texas Medical Branch, 2018 Supervisor: C. M. Wiggs Dementia affects about 5,000,000 Americans and unfortunately this number will only continue to rise as the United States (US) population ages. It is a financially burdening disease, costing billions of dollars and hundreds of thousands of hours of unpaid assistance by family members annually. As the US demographics continue to change, it is important to understand the perception and lived experience of dementia across different cultures. The understanding of this concept will improve education and communication, which in turn is likely to improve early detection of the disease and reduce cost by avoiding unnecessary treatments and providing a culturally appropriate care plan through the journey of the disease. Objective: The purpose of this study was to understand the lived experience of having a close family member diagnosed with dementia and to explore the cultural perspectives of dementia. v Method: The study utilized phenomenology and four to six participants from four ethnic groups were included in the study. All participants were direct relatives of the patient diagnosed with dementia. The participants included spouses, children and siblings. Data was collected using semi-structured interview method, chosen from four cultural groups African Americans, Asians, Caucasians, and Hispanics representing the population in a long-term care facility. Interviews were recorded. Data Analysis: All data collected was coded and similar themes were collated together. Four major themes and seven sub-themes were identified. Themes were viewed across cultures and within cultures. Conclusion: It was concluded that there are similarities within cultures and across cultures, and more significant differences across cultures than within cultures. vi Table of Contents List of Tables .............................................................................................................x List of Figures ............................................................................................................xi List of Abbreviations .................................................................................................xii Chapter 1: Introduction ..............................................................................................1 Phenomenon of Interest ....................................................................................1 Theoretical Framework .....................................................................................3 Identification of Research Question .................................................................4 Aim of Study .....................................................................................................5 Justification for Design and Significance of Study ..........................................6 Terminological Clarification.............................................................................9 Plan of the Remaining Chapters .......................................................................9 Chapter 2: Review of Literature ................................................................................11 Introduction/Preview of the Chapter.................................................................11 Why Is Understanding Culture Important? .......................................................11 Purpose of the Study .........................................................................................13 Significance of the Study ..................................................................................14 Overview of the Philosophical Foundations and Methods ...............................14 Literature Search Strategy ................................................................................16 Experiential Context .........................................................................................17 History of Nursing Homes ................................................................................19 Changing Demographics of Nursing Homes ....................................................22 Why Dementia? ................................................................................................23 Prevalence of Dementia in the US ....................................................................25 Dementia in Nursing Homes.............................................................................26 Theoretical Framework .....................................................................................27 Review of Relevant Research and Synthesis ....................................................30 Summary of Literature Review.........................................................................45 Chapter 3: Methodology ............................................................................................46 Research Aims and Significance of the Study ..................................................46 vii Study Design and Methods ...............................................................................47 Setting of this Study ..........................................................................................47 Sample and Sampling Technique .....................................................................48 Recruiting of the Sample ..................................................................................49 Protection of Human Subjects ..........................................................................50 The Role of the Researcher in Data Collection ................................................50 Data Collection .................................................................................................51 Data Analysis Method ......................................................................................53 Trustworthiness of the Study ............................................................................54 Rigor of the Study .............................................................................................55 Summary ...........................................................................................................56 Chapter 4: Results and Discussion .............................................................................58 Description of Participants................................................................................59 Setting of the Study...........................................................................................61
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