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Coping, Anxiety and Depression in Caregivers of People With Alzheimer’s Disease Claudia Cooper University College London Submitted for examination for PhD in May 2007 Supervised by Professors Gill Livingston & Martin Orrell UMI Number: U591924 All rights reserved INFORMATION TO ALL USERS The quality of this reproduction is dependent upon the quality of the copy submitted. In the unlikely event that the author did not send a complete manuscript and there are missing pages, these will be noted. Also, if material had to be removed, a note will indicate the deletion. Dissertation Publishing UMI U591924 Published by ProQuest LLC 2013. Copyright in the Dissertation held by the Author. Microform Edition © ProQuest LLC. All rights reserved. This work is protected against unauthorized copying under Title 17, United States Code. ProQuest LLC 789 East Eisenhower Parkway P.O. Box 1346 Ann Arbor, Ml 48106-1346 2 I, Claudia Cooper, confirm that the work presented in this thesis is my own. Where information has been derived from other sources, I confirm that this has been indicated in the thesis. 3 ABSTRACT Background: There have been few longitudinal studies investigating the impact of coping on psychological morbidity in caregivers of people with dementia (CG), and those have conflicting or unreplicated findings. About a quarter of caregivers of people with dementia (CG) experience clinically significant anxiety, but anxiety is relatively neglected in this group. Main Hypothesis: The relationship between burden at baseline (Tl) and anxiety a year later will be mediated by more dysfunctional coping strategies, and less emotion- focussed and problem-focussed coping strategies at Tl. Methods: 126 people with Alzheimer’s disease and their family carers were recruited, of whom 93(73.8%) were re-interviewed a year later. Sampling was designed to ensure that the participants were representative of people living in the UK with Alzheimer’s disease in terms of dementia severity, gender and care setting. I used the Hospital Anxiety and Depression Scale to measure carer anxiety, and the Brief COPE to measure coping strategies, to explore our hypothesis that the relationship between carer burden and anxiety and depression is mediated by coping style. Results: Using relatively fewer emotion-focussed strategies and more problem-focussed strategies mediated the relationship between caregiver burden and anxiety a year later, after controlling for potential confounders. Using fewer emotion focussed strategies also predicted higher psychological morbidity in general. More use of dysfunctional coping strategies mediated this relationship cross-sectionally but not on longitudinal analysis. Conclusion: Carers who used more emotion-focussed coping strategies in response to carer burden were protected from having higher anxiety levels a year later, while those using problem-focussed strategies were not. Most current psychological interventions are based on problem-solving coping strategies, but our results suggest that a psychological intervention package to encourage emotion-focussed coping may be a rational approach to reduce anxiety in dementia carers. Studies are needed to test such interventions. 5 ACKNOWLEDGEMENTS I would like to thank my supervisors Professors Gill Livingston and Martin Orrell for their advice and support throughout the project. I am grateful to the study participants, and the consultant psychiatrists, community mental health teams, and staff of the nursing and residential homes for their support. Many thanks also to the other members of the LASER-AD team, including Monica Manela, Alice Walker, Ginnette Kitchen, Jon Woods, Rachel Maidment, Joni Paton, Ciaran Regan and Katie Johnson. Together we collected the data I used in this study. Thanks to Lundbeck S A for a donation which funded data collection. 6 TABLE OF CONTENTS_____________________________ ABSTRACT...................................................................................................................................3 ACKNOWLEDGEMENTS............................................................................................................5 TABLE OF CONTENTS...............................................................................................................6 LIST OF TABLES....................................................................................................................... 10 LIST OF FIGURES....................................................................................................................11 LIST OF ABBREVIATIONS...................................................................................................... 12 1 INTRODUCTION...............................................................................................................15 1.1 D e m e n t ia .....................................................................................................................16 1.1.1 Alzheimer’s disease................................................................................................. 17 1.2 C a r e g iv e r s ...............................................................................................................19 1.2.1 Economic, legal and political aspects of caring ...................................................20 1.2.2 Morbidity in caregivers..............................................................................................21 1.3 An x ie t y ........................................................................................................................21 1.3.1 Symptoms................................................................................................................. 21 1.3.2 Prevalence ................................................................................................................ 22 1.3.3 Anxiety in older adults ..............................................................................................23 1.3.4 Na tural history ........................................................................................................... 24 1.3.5 Comorbidity............................................................................................................... 24 1.3.6 Secondary disability................................................................................................. 25 1.3.7 Aetiology..................................................................................................................... 26 1.3.8 Management ............................................................................................................. 2 7 1.4 C oping .........................................................................................................................28 1.4.1 Classifying coping.................................................................................................... 29 1.4.2 The relationship of coping to mental health ..........................................................31 1.4.3 Measuring coping in caregivers ............................................................................. 31 7 1.5 M o r b id it y in c a r e g iv e r s fo r peo p le w it h d e m e n t ia .................................................... 36 1.5.1 Comparison with non-caregivers and other caregivers........................................36 1.5.2 Prevalence and aetiology of caregiver morbidity...................................................38 1.5.3 Relationship of morbidity to coping strategies....................................................... 39 2 ANXIETY PREVALENCE, CORRELATES AND TREATMENT IN DEMENTIA CAREGIVERS: A SYSTEMATIC REVIEW ...........................................................................................56