THE EFFECTS OF FAMILY COMMUNICATION PATTERNS DURING THE MIDDLE PHASE OF ALZHEIMER’S DISEASE by Jenny Speice Dissertation submitted to the Faculty of the Virginia Polytechnic Institute and State University in partial fulfillment of the requirements for the degree of Doctor of Philosophy in Family and Child Development APPROVED: [oer [Tne tis Lot Cf mele Rosemary Bliés zner, co-chair Cleveland G. Sh ields, co-chair jpgttne ih. yl a fen CT i COUN. neh? Ay a SL a age & Cb x | Jay Manc ini a J Jo seph Ma xwell | / Leute! Fc : Howard Protinsky May, 1995 Blacksburg, VA THE EFFECTS OF FAMILY COMMUNICATION PATTERNS DURING THE MIDDLE PHASE OF ALZHEIMER'S DISEASE by Jenny Speice Rosemary Blieszner, co-chair Cleveland Shields, co-chair Family and Child Development (ABSTRACT) The relationships between family communication about the illness experience of middle phase Alzheimer's Disease and caregiver depression were examined in this study of 29 primary caregivers and their family members. Lag sequential analyses and repetitive sequence analyses were conducted on observational data to determine the effects of joint problem solving, joint illness talk, and competing problem solving/illness talk on caregiver depression. The findings indicate that caregivers who compete with family members about the focus of the communication were more depressed. In contrast, caregivers were less depressed when they talked jointly with family members about the illness. Communication about joint problem solving and joint illness talk were also strongly related in these families. Possible explanations for these findings and implications for family therapy and future research are discussed. Acknowledgements Many individuals and families have deeply touched my life. I am appreciative of those who have shared their stories of struggle, resilience, and competence and who have demonstrated many ways of being a family. I am especially grateful for the Speice, Ewiak, and Engist families who have shown me the beauty and wisdom of aging, among many other gifts. In particular, my parents have supported this work with care, hope, and immense love. My committee members all contributed to this research. Rosemary Blieszner bridged the mountainous distance with caring attentiveness over e-mail. J thank her for her cheerful guidance and editing finesse. Cleve Shields patiently brought me along in the quantitative journey and somehow managed my anxiety all the while. It has been a pleasure to work with both of them as co-chairs. I also appreciate the contributions of Jay Mancini, Bud Protinsky, and Joe Maxwell who joined in the creation of this work and supported its completion. I have learned much from this process. In August 1994, I arrived at the Family Medicine Center with much energy and enthusiasm. Many people helped me to survive the roller-coaster year. The Mental Health Services Team in various ways gave me enormous encouragement to complete this research, despite the clinical challenges. ill Thanks to Susan McDaniel, Dave Seaburn, Nancy Ruddy, Sally Rousseau, Clark Christensen, Jeff Harp, Tom Campbell and to Barbara Gawinski, in particular, for mentoring and caring “above the call”. I could not have accomplished this without their support. iv Table of Contents Cr ee ey Ce 2 ee Y oe 8 © © e 8 © © © © © © © @ © © 2 © © © © ee ww Family Communication Patterns ee © © © © © © © © © © © 8 © eo he ee Characteristics of Alzheimer’s Disease Family Tasks During the Phases of Alzheimer’s Disease. . . Research on Caring for Alzheimer’s Disease Patients 10 Research on Health Status of Caregivers 1] Research on Family Relations of Caregivers 12 o © © © e 6 Propositions and Hypotheses 12 7 © © © © © © © © © © © © © © © wo ew we we ew Methodology 15 Participants 15 Procedures 16 Depression Measure 16 Family Interaction Task 17 Data Coding 18 eo 8 © © © @© © © © © © © © © © © © © © © © © ee ee ell lll ll Results 2) e © © © © © © © © © © © © © 2 © © © © © © © © © 8 oe ew 6 ee ee lhl hl tll hl hl lll lll Data Preparation 2] Initial Analyses... 0... eee 22 Lag Sequential Analyses .......... 0.0.00... c ee eee eee 23 Sequence Repetition Analyses ................00000. 31 Discussion . 40 o © © © © © © © © © © © 8 ee ee eee ell lle lhl hl lhl hl hl lhl hl hl lhl hl hl hl ll Joint Problem Solving...........0..00. ..0.00.080. 40 Joint Illness Talk... 0... ee 4] Competing Talk 22... 0... cece 42 Competing Problem Solving/Illness Talk......... 42 Competing Illness Talk. .................0004. 43 Theoretical Implications ......................00.. 44 Family Communication During the Middle Phase . 44 Effects of Family Illness Talk on Caregiver Depression 46 Clinical Implications ......0..0.... 0..0.... .e.ee 47 Illness Storytelling .................0..0.0004 48 Assessment of Family Communication.......... 49 Limitations ....0..000 ..e .ee ee. ee .ee ee. ee ene 50 Recommendations for Future Research............... 51 References 54 e 8 © © © © © © © we ee ee hell lhl el hl lll lll lhl hl hl hl lhl lhl tl hl hl lll lll Appendix A: Participant Demographics .................... 64 Appendix B: Technical Appendix - Sequential Analysis........ 66 Appendix C: Institutional Research Review Board Approvals... 68 vii List of Tables Table Page 1 Family Communication Patterns .................0.0000. 19 2 Means, Standard Deviations (SD), and Correlations (r) of Individual Communication Codes with Caregiver Depression 24 3 Means, Standard Deviations (SD), and Correlations (r) of Lag Sequences with Caregiver Depression.................. 26 4 Correlations Between Joint Problem Solving and Illness Talk Lag Sequences... 6.0... 0 ee eee 29 5 Stepwise Regression of Lag Sequences on Caregiver Depression 30 6 Means, Standard Deviations (SD), and Correlations (r) of Sequence Repetition with Caregiver Depression........... 34 7 Correlations Between Competing Illness Talk and Joint [llness Talk Sequence Repetitions .......0..... e.ee. ee.e .ee e 36 8 Stepwise Regression of Sequence Repetitions on Caregiver Depression ....... 0.0.0.0... 00. cee eee eee 38 viil Chapter I Introduction The challenge of managing family life with a debilitating chronic illness such as Alzheimer's Disease (AD) is monumental. The family is confronted with adjusting to the patient's chronic and progressive cognitive declines and behavioral changes amidst great uncertainty about new caregiving demands and the future quality of the relationship with the AD patient (Blieszner & Shifflett, 1990). The illness experience of AD includes substantial physical, emotional, and relational demands on all family members. The primary caregiver often feels particularly burdened (Schultz, Visintainer, & Williamson, 1990). This study examined the relationship between family communication patterns and caregiver depression during the middle phase of AD. The patients and families who participated in this study were several years post-diagnosis of AD, and were considered to be in the middle phase of the illness. Their experience of this debilitating illness was expected to be very different from families that have recently received a diagnosis of AD or who are preparing for imminent death. The adjustment tasks during the many months and years of the middle phase are significantly different from those required immediately following diagnosis or during bereavement (Rolland, 1984). During the "long haul" of the middle phase of a chronic illness, families often face several more years of demands that may threaten their developmental needs to attend to other tasks beyond caregiving (Rolland, 1987). Therefore, it is important for caregivers and families to address aspects of life other than the illness. There is little literature on directly observed family communication patterns and their relationship to caregiver functioning. Some researchers have studied the relationship between expressed emotion in family communication and the well-being of caregivers of AD patients (Bledin, MacCarthy, Kuipers, & Woods, 1990; Gilhooly & Whittick, 1989; Niederehe, 1990; Orford, O'Reilly, & Goonatilleke, 1987). However, most of the literature has used self-report measures exclusively or focused on the early phase of AD and caregiving. The purpose of the present study was to examine empirically the relationships among family communication about the illness experience, family problem solving, and primary caregiver depression during the middle phase of AD. The results of this investigation have theoretical implications for understanding family communication and caregiver health status during the middle phase of a chronic illness. Clinical implications for