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Hurricane Preparedness of Community-Dwelling Dementia Caregivers in South Florida Janelle J

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Hurricane Preparedness of Community-Dwelling Dementia Caregivers in South Florida Janelle J University of South Florida Scholar Commons Graduate Theses and Dissertations Graduate School January 2012 Hurricane Preparedness of Community-Dwelling Dementia Caregivers in South Florida Janelle J. Christensen University of South Florida, [email protected] Follow this and additional works at: http://scholarcommons.usf.edu/etd Part of the American Studies Commons, Public Health Commons, and the Social and Cultural Anthropology Commons Scholar Commons Citation Christensen, Janelle J., "Hurricane Preparedness of Community-Dwelling Dementia Caregivers in South Florida" (2012). Graduate Theses and Dissertations. http://scholarcommons.usf.edu/etd/4010 This Dissertation is brought to you for free and open access by the Graduate School at Scholar Commons. It has been accepted for inclusion in Graduate Theses and Dissertations by an authorized administrator of Scholar Commons. For more information, please contact [email protected]. Hurricane Preparedness of Community-Dwelling Dementia Caregivers in South Florida by Janelle J. Christensen A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy Department of Anthropology College of Arts and Sciences and Master of Public Health Department of Global Health College of Public Health University of South Florida Major Advisor: Heide Castañeda, PhD Kevin Yelvington, PhD Linda Whiteford, PhD Jaime Corvin, PhD Lisa Brown, PhD David Chiriboga, PhD Date of Approval: March 5, 2012 Key Words: home and community-based care, informal caregivers, disaster preparedness, health literacy, risk fatigue Copyright © 2012, Janelle J. Christensen Dedication I dedicate this work to anyone providing medical services and care for people in their community. And the Governor of Florida, who said, “Florida does not need any more anthropologists” while I was completing my research in 2011. Acknowledgements I am deeply grateful to my dedicated committee members. I cannot glow enough about the support provided by advisor, Dr. Heide Castaneda, who was attentive, forever diplomatic, deeply insightful, and patient. My gratitude also goes to Dr. Linda Whiteford and Dr. Kevin Yelvington. I specifically thank Dr. David A. Chiriboga for helping me to set up my partnership with Alzheimer’s Community Care, Inc. I am grateful for both his insights and assistance. Dr. Lisa M. Brown has been critical to my training as an academic, teaching me the art of research and peer- reviewed publications. Dr. Jaime W. Corvin has been essential to disaster management research from a public health perspective. My parents, John and Donna Christensen, never wavered in their support. I thank them, and my brother, Erik Christensen, Cousin Rachel, Aunt Vicki, and John Stewart, and Grandpa Ernie, for their understanding and their growing enthusiasm. Heart- felt thanks to long-time friend Sarina Steinbarth (and her mother Susie). My husband, David Rodenfels kept me (relatively) sane through this process. Teddy and Jim Rodenfels have shared with me their own stories and assisted us through the changes in our lives. Thanks to Aunt Melanie Mouras has edited major parts of this dissertation. I would also like to thank my adopted family, my friends, and fellow-graduate students: Jennifer Syvertsen, Elizabeth Cooper, Carylanna Taylor, Besty Danforth-Richey, Rohan Jeramiah, Racine and Heather Brown, and Cindy Grace-MacCasky who went ahead of me or along side of me in the dissertation and graduation process and shared their experiences. I also would like to thank Maressa Dixon, Bridget Cotner, Melissa Pope, Mabel Sabogal for being amazing colleagues, and friends. My partnering organization, Alzheimer’s Community Care, and the staff, Mary Barnes, CEO, Patsy Oram, COO, and Ron Radcliffe VP of CCS, Kathryn Hosaflook, Janet Zweiback and JoEllen Smith, Danielle Worley, and Thomas Leitzsch gave an impressive amount of assistance. Table of Contents List of Tables vi Abstract x Chapter 1: Introduction 1 Anthropological Contributions to the Study of Alzheimer’s and Disasters 2 Justification for Research 4 Overview of Chapters 5 Notes on Terminology 12 Chapter 2: Research Setting 14 History and Background: Hurricanes in Florida 15 Okeechobee Hurricane of 1928 18 Contemporary Hurricanes 21 Hurricane Andrew 21 Hurricane Charley 21 Hurricane Frances 22 Hurricane Ivan 22 Hurricane Jeanne 23 2005 Hurricane Season 24 Hurricane Dennis 24 Hurricane Katrina 24 Hurricane Wilma 25 Special Needs Shelters (SpNS) 26 Chapter 3: Literature Review of Alzheimer ’s disease and Caregiving 30 Part I: Alzheimer’s Disease and Related Dementias 32 Core Theoretical Concerns. 33 Time and Age 34 Social Construction of the Dementias 36 “Normal Aging” and Naming a Disease: A Bio-social Endeavor 37 Measuring Loss: Diagnosis, Testing, and Stages 42 Biomedical Processes 42 Diagnostic and Statistical Manual of Mental Disorders 43 The Three-Stage Alzheimer’s Disease Model 44 Seven Stage Dementia Models 47 Functional Assessment Staging (FAST) 49 Activities of Daily Living (ADLs) 52 Dementia and Risk. 54 Wandering and Becoming Lost 55 Mechanisms for Reducing Risks 57 i Summary and Key Points AD and Related Dementias 58 Part II: Background and Literature Review: Caregiving for a Person 59 with Dementia Social Roles: Nature and Nurture 60 Who Provides Informal Care? 60 Motivations to Provide Care for PWD 63 Caregiving and Risk 65 Quality of Care 66 Home and Community-Based Care: Costs and Benefits 67 Caring and Disaster Planning 71 Summary and Key Points of Caregiving 72 Chapter 4: Literature Review Hurricane Vulnerability and Constructions 74 of Risk Disasters and Vulnerability 74 The Disaster Cycle 77 Mitigation 77 Disaster Preparedness 78 Pressure and Release Model 78 Local Emergency Management Plans 80 Measuring Destruction: The Saffir-Simpson Wind Scale 81 Theoretical Frameworks: Risk Society 81 Certainty in the Cone of Uncertainty 85 Summary of Disaster Literature 86 Chapter 5: A Theoretical Synthesis of Anthropology of Dementia and the 88 Anthropology of Disasters Anthropology of Policy 89 Health Policy and Critical Medical Anthropology 90 Anthropology of Disasters 93 Anthropology Disaster and the Aged 95 Anthropology of Disability and Disaster 97 Critique of Vulnerability 99 Anthropology of Dementia 101 Biological Death 103 Living Death 103 Relational Death and the Politics of Recognition 104 Biosocial death 107 Exploring and Developing an Explanatory Model of “Risk Fatigue” 109 Hurricane “Amnesia” and Public Health Implications 114 Summary and Key Points 116 Chapter 6: Methodology 117 Partnering Organization 118 Mixed Methods 121 Ethical Considerations 123 ii Participant Observation 125 Purpose 125 Procedure 125 Analysis 127 Limitations 127 Semi-Structured Interviews with Staff (N=8) 128 Purpose 128 Procedure 128 Analysis 128 Limitations 128 Initial Baseline Disaster Plan Review (N=290) 129 Purpose 129 Procedure 129 Analysis 130 Limitations 131 Follow-up Disaster Plan Review (N=259) 131 Purpose 131 Procedure 132 Analysis 132 Limitations 132 Caregiver Survey (N=253) 133 Purpose 133 Procedure 133 Analysis 134 Limitations 135 Semi-Structured Interviews with Caregivers (N=20) 135 Purpose 135 Procedure 135 Analysis 136 Limitations 137 Disaster Literacy Measurement (n=20) 138 Purpose 138 Procedure 138 Analysis 139 Limitations 141 Final Group Interview with Administration: 12-22-2011 141 Purpose 141 Procedure 141 Analysis 142 Summary and Key Points 142 Chapter 7: Results 143 Staff Interviews 143 Populations Served. 144 Staff Hurricane Experiences 147 Staff Perceptions of Hurricane Likelihood 151 iii Staff Perceptions of Caregiver Hurricane Preparedness 152 Staff Perception of Caregiver Preparedness after ACC 156 Participation Staff Perceptions of Caregiver Support Networks 158 Staff Perceptions of Caregivers’ Unmet Disaster Planning Needs 158 Staff Awareness of Laws and Policies 160 Summary of Staff Interview Findings 161 Baseline Disaster Plan Review 162 Demographics of Persons with Dementia 162 Caregiver Sex and Relationship to Beneficiary 163 Caregiver Age 165 Caregiver Ethnicity and Race 165 Baseline Disaster Plan Review 166 Safe Return Enrollment 168 Transportation to Safety 169 Summary of Baseline Disaster Plan Review Findings 171 Intervention with Staff and Form Modification 172 Follow-up Disaster Plan Review 173 Age of PWD 173 Caregivers 174 Safe Return Enrollment 175 Recovery 176 Summary of Follow-Up Disaster Plan Review Findings 178 Caregiver Survey 178 Mobility of PWD 179 Caregiver Demographics 180 Employment Status of Caregivers 180 Living Arrangements 182 Assistance from Others 182 Caregiver Health Issues 184 Caregiver Burden 185 Caregiver Hurricane Experience 186 Caregiver Perception of Hurricane Likelihood 187 Preparedness: Disaster Kits, Hurricane Shutters, Access to 188 Generator Home Structure 189 Recovery 190 Summary of Findings from Caregiver Survey 193 Caregiver Interviews 195 Caregiver Hurricane Experiences 195 The PWD Assisted with Hurricane Preparation or Recovery 196 Activities and Distractions during the Hurricane 197 The PWD did not Notice the Hurricane 198 Hurricane-Caused Problems for the PWD 199 Caregiver Hurricane Plans 199 PWD Resisted Evacuation 200 iv Difficulty with Recovery 201 Shelter Experience 202 Special Needs Shelters 202 Regular Shelters 203 Caregiver Hurricane Plans 204 Sheltering at Home 205 Evacuating to a Family or Friend’s Home 209 Evacuating to a Hotel 211 Evacuating to a Shelter 212 Destination Unknown 213 Caregiver Risk Communication and Risk Assessment Preferences 215 Disaster Kits 216
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