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Expressed Emotion in Caregivers of Persons with Dementia and the Relationship With Expressed Emotion in caregivers of persons with dementia and the relationship with psychological outcomes in caregivers and persons with dementia. A thesis submitted to the University of Manchester for the degree of Doctor of Philosophy in the Faculty of Biology, Medicine and Health 2018 Roxanne Safavi School of Health Sciences CONTENTS List of tables………………………………………………………………………... 9 List of figures……………………………………….................................................. 10 List of appendices……………………………….………………………………….. 11 List of Abbreviations……………………………………………………………….. 12 Abstract……………………………………………………………………………... 17 Declaration…...……………………………….…….................................................. 18 Copyright statement……………………………………………….………………... 18 Acknowledgements……………………………………............................................. 19 Preface……………………………………………………………………………… 19 Journal thesis format……………………………..…………………….…………… 20 Chapter 1: Background………………………………………………………........ 21 1.1 Dementia………………………………………….…………………………….. 21 1.1.1 Overview of dementia…………………………………..……………… 21 1.1.2 Prevalence of dementia……………………………………..………….. 23 1.1.3 Long term care for dementia……………………………………..…….. 24 1.1.4 Pharmacological treatment of dementia……………………………...... 25 1.1.5 Non-pharmacological treatment of psychological symptoms of dementia..………………………………………………………………. 26 1.2 Caregivers of persons with dementia…………………………………………… 28 1.2.1 The role of caregivers………………………………………………….. 28 1.2.2 Consequences of caring………………………………………………... 29 1.3 Persons with dementia………………………………………………………….. 32 1.3.1 Psychological disorders in persons with dementia…………………...... 32 1.3.2 Quality of life in persons with dementia……………………………...... 34 2 1.3.3 Example of tools used to measure psychological symptoms and quality of life in persons with dementia………………………………………... 36 1.4 Expressed Emotion…………………...………………………………………… 38 1.4.1 The development of the Expressed Emotion construct…....................... 38 1.4.2 Measuring Expressed Emotion………………………………................ 40 1.4.3 Mental health, Physical health and Expressed Emotion……………….. 44 1.4.4 Persons with dementia and Expressed Emotion……………………….. 45 Chapter 2: Systematic review………………………………….…………………. 48 2.1 Outlining the paper……………………………………………………………... 48 2.2 Paper One: Expressed Emotion in relatives of persons with dementia: a systematic review and meta-analysis……………………………………….…... 48 2.2.1 Abstract………….……………………………………………………... 50 2.2.2 Introduction……………………………….………………………........ 51 2.2.2.1 Aims…………………………..……...………………………… 54 2.2.3 Methods………………………………………………………………... 54 2.2.3.1 Search Procedure……………………..………………………... 54 2.2.3.2 Inclusion Criteria………………………………………………. 55 2.2.3.3 Quality Assessment…………………………………………….. 57 2.2.3.4 Meta-analysis…………………………………………………... 57 2.2.4 Results…………………………………………………………………. 58 2.2.4.1 Overview of reviewed studies………………………………….. 58 2.2.4.2 Quality of studies………………………………………………. 62 2.2.4.3 Main findings………………………..…………………………. 64 2.2.4.3.1 Rates of EE in relatives…………………………….. 64 2.2.4.3.2 Relative EE and relative demographics……………. 64 2.2.4.3.3 Relative EE and relative wellbeing………………… 64 3 2.2.4.3.4 Findings from meta-analysis……………………….. 67 2.2.4.4 Relative EE and relative factors…………………………........... 73 2.2.4.4.1 Causal attributions………………………………….. 73 2.2.4.4.2 Coping mechanisms………………………………... 73 2.2.4.4.3 Support……………………………………………... 74 2.2.4.4.4 Relationship quality………………………………... 74 2.2.5 Discussion………………………………………………………..…….. 75 2.2.6 Limitations of the review………………………………………………. 78 2.2.7 Implications for future research and practice………………………….. 78 2.2.8 Conclusions…………………………………….……………………… 79 2.2.9 References……………………………………………………………… 81 Chapter 3: Aims of the thesis……………………………………………………... 85 3.1 The Research Questions………………………………………………………... 85 3.2 The empirical studies………………………………..…………………………. 87 Chapter 4: Methods…………………………………………..…………………… 88 4.1 Overview…………………………………………………………………........... 88 4.2 Inclusion and exclusion criteria………………………………………………… 88 4.3 Recruitment……………………………………………………………………... 89 4.4 Ethical considerations………………………………….……………………….. 91 4.4.1 Approval……………………………………………………………….. 91 4.4.2 Participant consent……………………………………………………... 92 4.4.3 Participant confidentiality and anonymity……………………………... 93 4.4.4 Participant burden……………………………………………………… 94 4.4.5 Participant distress……………………………………………………... 94 4.4.6 Lone working…………………………………………………………... 95 4.5 Data collection………………………………………………………………….. 95 4 4.5.1 Caregiver measures…………………………………………………….. 95 4.5.1.1 Demographics………………………………………………….. 95 4.5.1.2 Expressed Emotion…………………………………………….. 96 4.5.1.3 Psychological wellbeing……………………………………….. 96 4.5.1.4 Burden…………………………………...................................... 97 4.5.1.5 Relationship quality…………………………………................. 97 4.5.1.6 Illness perception………………………………………………. 98 4.5.2 Persons with dementia measures………………………………………. 98 4.5.2.1 Demographics …………………………………………………. 99 4.5.2.2 Cognitive functioning………………………………………….. 99 4.5.2.3 Psychological wellbeing ………………………………………. 100 4.5.2.4 Relationship quality……………………………………………. 103 4.5.2.5 Perceived EE………………………………………………........ 103 4.5.2.6 Illness perception………………………………………………. 103 4.6 Sample size calculations………………………………………………..………. 104 4.7 Attrition from the studies……………………………………………………….. 105 4.8 Specific methodological considerations………………………………………... 106 4.8.1 Paper 2 (Chapter 5): Expressed Emotion in significant others of people with a recent diagnosis of dementia predicts increased significant others burden and distress……………………………………………… 106 4.8.1.1 CFI adaptations for dementia…………………………………... 106 4.8.1.2 CFI coding……………………………………………………... 107 4.8.1.2.1 Learning to code (CFI training)……………………. 107 4.8.1.2.2 Critical comments………………………………….. 107 4.8.1.2.3 Hostility…………………………………………….. 108 4.8.1.2.4 Emotional over-involvement……………………….. 109 5 4.8.1.2.5 Warmth……………………………………………... 110 4.8.1.2.6 Positive Remarks…………………..………….......... 110 4.8.1.2.7 Classifying caregivers as High- or Low-EE……….. 110 4.8.2 Paper 3 (Chapter 6): Expressed Emotion in caregivers and psychological wellbeing in persons with dementia……………………. 111 4.8.3 Paper 4 (Chapter 7): Critical comments mediate the association between caregiver distress and psychological symptoms in persons recently diagnosed with dementia……………………………………... 111 Chapter 5: Expressed Emotion and caregiver outcomes……………………….. 113 5.1 Outlining the paper……………………………………....................................... 113 5.2 Paper 2: Expressed Emotion in significant others of people with a recent diagnosis of dementia predicts increased significant others burden and distress……………………………...................................................................... 113 5.2.1 Abstract………………………………………………………………… 115 5.2.2 Introduction……………………………………………………………. 116 5.2.3 Methods………………………………………………………………... 118 5.2.4 Results…………………………………………………………………. 122 5.2.5 Discussion..…………………………………………………………….. 125 5.2.6 References……………………………………………………………… 130 Chapter 6: Expressed Emotion and PWD outcomes……………………………. 132 6.1 Outlining the paper……………………………………………………………... 132 6.2 Paper 3: Expressed Emotion in caregivers and psychological wellbeing in persons with dementia………………….………..……………………………... 132 6.2.1 Abstract………………………………………………………………… 134 6.2.2 Introduction……………………………………………………………. 135 6.2.3 Methods………………………………………………………………... 139 6 6.2.4 Results…………………………………………………………………. 142 6.2.5 Discussion……………………………………………………………… 150 6.2.6 References……………………………………………………………… 156 Chapter 7: Caregiver distress and psychological symptoms in PWD………… 159 7.1 Outlining the paper……………………………………………………………... 159 7.2 Paper 4: Critical comments mediate the association between caregiver distress and psychological symptoms in persons recently diagnosed with dementia........ 159 7.2.1 Abstract………………………………………………………………… 161 7.2.2 Introduction……………………………………………………………. 162 7.2.3 Methods………………………………………………………………... 165 7.2.4 Results…………………………………………………………………. 168 7.2.5 Discussion……………………………………………………………… 175 7.2.6 References……………………………………………………………… 180 Chapter 8: General discussion……………………………………………………. 183 8.1 Key findings……………………………………………….................................. 183 8.1.1 Paper One: Expressed Emotion in relatives of persons with dementia: a systematic review and meta-analysis………………………………… 183 8.1.2 Limitations in the current evidence base………………………………. 187 8.1.3 Paper Two (Chapter 5): Expressed Emotion, burden and distress in significant others of people with dementia…………………………….. 190 8.1.4 Paper Three (Chapter 6): Expressed Emotion in caregivers and psychological wellbeing in persons with dementia …………………… 192 8.1.5 Paper Four (Chapter 7): Critical comments mediate the association between caregiver distress and psychological symptoms in persons recently diagnosed with dementia …………………………………….. 193 8.2 General discussions…………………………………….………………………. 194 7 8.2.1 Cross sectional findings………………………………….…………….. 196 8.2.2 Longitudinal findings………………………………………………….. 200 8.3 Strengths and limitations…………………………………………….…………. 205 8.3.1 Strengths……………………………………………………….………. 205 8.3.2 Limitations…………………………………………………..…………. 208 8.4 Clinical implications……………………………………………..……………... 212 8.5 Proposals for the future………………………………………….……………… 216 8.6 Conclusions……………………………………………………………………... 219 References…………………………………………………………………………... 221 Appendices…………………………………………………………………………. 239 Total word count: 53,665 8 List of tables Table 1: Common symptoms experienced by people with dementia………………. 22 Table 2: Examples of non-pharmacological
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