Family Resiliency, Sense of Coherence, Social Support And
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FAMILY RESILIENCY, SENSE OF COHERENCE, SOCIAL SUPPORT AND PSYCHOSOCIAL INTERVENTIONS: REDUCING CAREGIVER BURDEN AND DETERMINING THE QUALITY OF LIFE IN PERSONS WITH ALZHEIMER’S DISEASE by Havovi B. Shroff A Dissertation Submitted to the Faculty of The College of Education in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy Florida Atlantic University Boca Raton, Florida August 2014 Copyright Havovi B. Shroff 2014 ii ACKNOWLEDGEMENTS It is with the deepest gratitude that I would like to thank everyone who has contributed in affording me with the numerous opportunities and efforts required, for completing this dissertation. Firstly, I would like to thank Florida Atlantic University’s Department of Counselor Education for its professional and skilled faculty, especially the Department Chair Dr. Paul Peluso. In particular, I would especially like to thank my dissertation Chairperson, Dr. Michael Frain, who has patiently guided, encouraged and advised me throughout this process. Thank you to my committee members Dr. Elizabeth Villares, and Dr. Greg Brigman who have been a source of support and comfort from the commencement of this journey. I will be forever indebted to these three individuals for assisting and advocating for me every step of the way. I’d like to thank Dr. Maria Ordonez and Glenda Connelly LCSW for lending their invaluable expertise in the area of Alzheimer’s disease and also to Anita Pennathur, Anu Nagar, Bradley Trager and Jaimee Schulson for all their assistance. My special thanks to Dr. Dushyant Uttamsingh, Dr. Asmeeta Punwani, Erica Brown, Dr. and Mrs. Mukesh Wadhwa at Stratford Court and Ms. Preet Sahi at Assisted Living in Florida, for coming through for me when I needed them the most. My heartfelt gratitude to Dr. Holly Katz, Dr. Marcia Mofson, Dr. Richard Reiter and Linda Tepper, LCSW who have kept me focused and committed on this road. This dissertation would not have been possible without the constant encouragement, warmth and caring from the Caregivers of the Thursday morning Alzheimer’s support iv group at the Louis and Anne Green Memory and Wellness Center at FAU that I facilitate, and to them I am forever grateful. I am in awe of the strength, courage and resiliency you demonstrate in spite of all the odds. I would especially like to thank all the willing and engaged caregivers who participated in this study and made it all happen. I would like to thank my wonderful family and friends who have enabled my dream to come to fruition: my husband Burjis for being my truth, my inspiration, my loving, best friend and motivator, and for your faith, patience, understanding and confidence in me that has propelled me to excel; to my sons Dustyn and Kevyn for bringing joy and humor in my life and seeing me through my struggles with technology; to my dad, for your steadfast guidance and love always; and to my soul sister Maya for always being there for me with your prayers, affection and support. And lastly, my heartfelt thank you to my very special and talented mentor, Dr. Debra Ainbinder, for being my role model and beacon on this journey from start to finish. You’ve always been my inspiration and have set the bar by embodying qualities such as unconditional positive regard, empathy, warmth and professionalism that make you such an effective, proficient and dedicated counselor, supervisor, educator and human being… I thank you for giving me the zest to enrich, educate and improve myself every day. v ABSTRACT Author: Havovi B. Shroff Title: Family Resiliency, Sense of Coherence, Social Support and Psychosocial Interventions: Reducing Caregiver Burden and Determining the Quality of Life in Persons with Alzheimer’s Disease Institution: Florida Atlantic University Dissertation Advisor: Dr. Michael Frain Degree: Doctor of Philosophy Year: 2014 Alzheimer's disease (AD) is a progressive, degenerative disorder that attacks the brain's nerve cells, or neurons, resulting in loss of memory, thinking and language skills, and results in behavioral changes and lack of communication. Family members and caregivers of persons with Alzheimer’s disease can assume added responsibilities and stress due to the progressive and degenerative component of this disability and places an added strain on the family system. This study was designed to examine predictors of quality of life of persons living with AD and to examine caregiver burden and predictors of quality of life of persons living with AD. This study hopes to empower the caregivers and test the resiliency model of family stress, sense of coherence and social support while incorporating individual patient and family needs by surveying caregivers involved with vi working with patients with AD. Specific aims of the study include validating relationships of the resiliency model while determining the importance of family resiliency, the sense of coherence, social support and the role of psychosocial interventions specifically Validation Communication Intervention (VCI), to reduce caregiver burden and to predict the quality of life in persons with Alzheimer’s disease. vii DEDICATION The following manuscript is dedicated to my parents: My courageous and tireless dad who was by my mum’s side for fifty years and was her sole caregiver. My mum who fought bravely and succumbed valiantly to Parkinson’s disease and who continues to be my inspiration and guidance and whose motivation, strength and light continues to shine on me always. FAMILY RESILIENCY, SENSE OF COHERENCE, SOCIAL SUPPORT AND PSYCHOSOCIAL INTERVENTIONS: REDUCING CAREGIVER BURDEN AND DETERMINING THE QUALITY OF LIFE IN PERSONS WITH ALZHEIMER’S DISEASE LIST OF TABLES ............................................................................................................ xii LIST OF FIGURES ......................................................................................................... xiii CHAPTER I. INTRODUCTION ........................................................................................ 1 Statement of the Problem ........................................................................................ 1 Theoretical Framework ........................................................................................... 6 Statement of the Purpose ........................................................................................ 9 Research Questions and Hypotheses .................................................................... 10 Definitions............................................................................................................. 13 Summary ............................................................................................................... 16 CHAPTER II. REVIEW OF LITERATURE ................................................................... 18 Early Detectors of Alzheimer’s disease ................................................................ 20 Family Resiliency ................................................................................................. 22 Theories of Family Resilience .................................................................. 24 ABCX Model of Family Stress ................................................................. 26 The Family Adjustment and Adaptation Response (FAAR) Model ......... 27 Sense of Coherence (SOC) ....................................................................... 28 viii Resiliency Model of Family Stress, Adjustment, and Adaptation ............ 28 Social Support ....................................................................................................... 30 The Nature of Social Support ................................................................... 32 Caregiver Burden .................................................................................................. 34 Alzheimer’s Disease and Caregiver Resources ........................................ 36 Resources for Enhancing Alzheimer’s Caregiver Health (REACH) ........ 38 Psychosocial Interventions .................................................................................... 40 Validation Communication Intervention (VCI) .................................................... 42 Case Study using Validation Communication Intervention ...................... 46 Quality of Life in Persons with Alzheimer’s Disease ........................................... 49 CHAPTER III. METHODOLOGY .................................................................................. 53 Participants ............................................................................................................ 54 Research Plan ........................................................................................................ 56 Dependent and Independent Variables ..................................................... 58 Instrumentation ..................................................................................................... 59 Family Crisis Oriented Personal Evaluation Scales (F-COPES) .............. 60 Family Coping Coherence Index (FCCI) .................................................. 61 Social Support Index (SSI) ....................................................................... 62 Interpersonal Communication Satisfaction Inventory (ICSI) ................... 63 Caregiver Burden Scale (CBS) ................................................................. 65 Alzheimer’s Disease Related Quality of Life (ADRQL) .......................... 66 Descriptive Information ...........................................................................