SSStttooonnnyyy BBBrrrooooookkk UUUnnniiivvveeerrrsssiiitttyyy The official electronic file of this thesis or dissertation is maintained by the University Libraries on behalf of The Graduate School at Stony Brook University. ©©© AAAllllll RRRiiiggghhhtttsss RRReeessseeerrrvvveeeddd bbbyyy AAAuuuttthhhooorrr... Spousal Identity Stage Theory in Dementia Caregiving A Bittersweet Journey A Dissertation Presented by Carolyn Marie Gallogly to The Graduate School in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy in Social Welfare Stony Brook University May 2008 Stony Brook University The Graduate School Carolyn Marie Gallogly We, the dissertation committee for the above candidate for the Doctor of Philosophy degree, hereby recommend acceptance of this dissertation. Harvey A. Farberman, Ph.D. – Dissertation Advisor Professor, School of Social Welfare Richard H. Morgan, Ph.D. – Chairperson of Defense Clinical Assistant Professor, School of Social Welfare Angel Campos, Ed.D. Associate Professor, School of Social Welfare Christopher L. Hayes, Ph.D. Gerontology, Long Island University (Retired) This dissertation is accepted by the Graduate School Lawrence Martin Dean of the Graduate School ii Abstract of the Dissertation Spousal Identity Stage Theory in Dementia Caregiving A Bittersweet Journey by Carolyn Marie Gallogly Doctor of Philosophy in Social Welfare Stony Brook University 2008 This qualitative study into the identity issues facing spousal caregivers of persons with a perceived cognitive deficit, grew out of the studies conducted by Farberman, Finch, Horowitz, & Lurie (2001) and Farberman, Finch, Lurie, & Morgan (2003). These two studies showed that the period of peak burden for caregivers occurred during the middle stages of caregiving, when there was a shift from Instrumental Activities of Daily Living (IADL) support to Activities of Daily Living (ADL) support. The increased burden was greatest for spousal caregivers of those with dementia. The question is why? Although much research has been done on the general subject of burden, this study approaches the issue of burden with the lens of spousal social identity. Using grounded theory methods, 40 spousal caregivers were interviewed, the majority of whom were white females (although 11 were male, and 3 were non-white). iii A purposive sampling technique was used and recruitment of respondents took place at Alzheimer‟s support groups, adult day care centers, and other relevant sources. The interview guide evolved as new information emerged, with interviews averaging 1 ½ hours. The results showed a distinct change in the caregivers‟ perceptions of their own identities, as well as their care receivers‟ identities. This change often occurred simultaneous with a specific event that dramatized the care receivers‟ lack of mastery with resulting increased dependency. The conceptualization of the couple‟s identity, as a symbiotic pair, borrowing the direct meaning of the metaphor of symbiosis from biology, is central to the findings. The data from the interviews pushed in the direction of a stage theory, and indeed all of the caregiving couples, with one exception, were moving through the proposed stages, based on types of symbiosis. The grounded theory arising from this research points out that the spousal relationship intensifies during the caregiving experience, thus clarifying why spousal caregivers often become overwhelmed by various sources of stress, and when intervening mediators should be attempted in order to support both care receiver and caregiver. iv Dedication This research project is dedicated to my mother, Marcella Gallogly, who not only lived the journey of the dementia caregiver spouse, but serves as my constant model of loving commitment to him, from whom much was taken. She never wavered in her loving care. Although the disease could not be vanquished, together, they vanquished the fear. CONTENTS ABSTRACT .................................................................................................................... iii CONTENTS ......................................................................................................................v LIST OF TABLES .................................. ……………………………………………...vii CHAPTER 1: INTRODUCTION AND REVIEW OF LITERATURE ...........................1 Background and Demography of Family Caregiving......................................1 Statement of the Research Question .................................................................2 Caregiving and Dementia ...................................................................................3 Caregiving and the Marital Relationship .........................................................7 Caregiving Stages and Transitions ..................................................................10 Caregiving and Identity ....................................................................................16 CHAPTER 2: METHODS USED IN STUDY OF SPOUSAL DEMENTIA CAREGIVERS ...................................................................................................25 Time Frame for Data Collection and Analysis................................................26 Study Population ...............................................................................................26 Research Design ................................................................................................33 CHAPTER 3: RESULTS: SYMBIOTIC STAGE THEORY, STAGES 1-3 .................40 Introduction: The Metaphor of Symbiosis .....................................................40 Stage 1: Normal Marital Mutualistic Symbiosis ............................................44 Stage 2: Pre-Diagnosis. (A Period of 1-5 Years) ..............................................46 Stage 3: Diagnosis .............................................................................................48 Part 1: Alarm Sounds. See Physician .......................................................48 Part 2: Diagnosis. The Balance is Shaken ................................................52 Part 3: Post-Diagnosis. A Time of Transition .........................................54 A. Changing Sense of Self: I am a Caregiver .........................................54 B. Changing Social Identity within the Extended Family .......................59 C. Changing Social Identity in the Greater Social Milieu .......................62 CHAPTER 4: SYMBIOTIC STAGE THEORY, STAGE 4 ..........................................68 Stage 4: Commensalistic Symbiosis .................................................................68 Causes of Commensal Symbiosis ...............................................................69 1. Health of Care Receiver ......................................................................69 2. Care Receiver Lack of Mastery ..........................................................71 3. Care Receiver and the Driving Issue ..................................................73 4. Care Receiver Dependency .................................................................77 5. Caregiver Assistance with Activities of Daily Living ........................78 6. Care Receiver Stress and Fear ............................................................82 vi 7. The Couple‟s Loss of Intimacy ...........................................................83 8. Lack of Communication Between Caregiver and Care Receiver ..................................................................................85 9. Public Episode ..................................................................................86 10. Situational Stress for Couple in External Environment ....................90 Caregiver Behaviors Verifying Commensal Symbiosis ...........................92 1. Medical Interactions............................................................................93 2. Problem Solving Skills .......................................................................94 3. Protection of Spouse Public Image .....................................................95 Outcomes of Commensalistic Symbiosis ...................................................95 1. Pressure of Home Chores...................................................................95 2. Worries About Money ......................................................................96 3. Worries About the Future ...................................................................98 Tipping Point. Caregiver Endangered by Symbiosis ...................................99 CHAPTER 5: SYMBIOTIC STAGE THEORY, STAGES 5-A & 5-B .......................105 Stage 5-A: Toxic Dependent Symbiosis.........................................................107 Factors Contributing to the Toxicity ...........................................................109 1. Isolation and Lack of Transportation ................................................109 2. Difficult Behaviors of Care Receiver ...............................................110 3. Lack of Communication Between Caregiver and Care Receiver ..................................................................................111 4. Unsupportive Family Member ..........................................................112 5. Mental Health of the Caregiver.........................................................113 6. No External Services.........................................................................115 Stage 5-B: Mediated Dependent Symbiosis ..................................................117 Factors Mediating Symbiotic