Table Of ContentThe University of Sheffield
‘Keeping Things in Balance’: Family Experiences of
Living with Alzheimer’s Disease. A Constructivist
Grounded Theory Study
Submitted for the degree of
Doctor of Philosophy (Ph.D.)
Faculty of Medicine and Dentistry
School of Nursing and Midwifery
Nuria Esandi Larramendi
March 2015
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ABSTRACT
Alzheimer’s disease (AD) is a chronic and incurable condition that results in
progressive cognitive decline and increasing dependence for the affected
individual. However, its impact is not limited to the individual but extends to the
family who usually have a fundamental role in providing support. Traditionally
research and policy on Alzheimer’s family care has been largely focused on
dyadic relationships and the experience of burden and stress, providing little
understanding of the complexity and reciprocity of the caring dynamic within the
family unit as it unfolds over time.
Adopting a family systems approach and a constructivist grounded theory
methodology this study explored the experiences of living with AD for native
Spanish families. Data were collected from a series of 26 interviews with seven
family units living with early stage AD and three focus groups with 14 caregivers
of people with mid-advanced AD. Data were analysed to capture the main
processes involved and charted how these evolved over time.
Three main temporal stages to the early AD experience were identified termed
‘what’s going on here’, ‘our life is changing’ and ‘keeping things together. These
developed in an iterative rather than linear fashion. This model and the processes
that shape the experience (‘noticing’, ‘watching’, redefining’ and ‘balancing’)
reinforce the evolutionary and dynamic nature of living with early AD. The data
strongly suggested that the nature and quality of existing family relationships and
interactions are significant factors influencing the experience of AD for all
members. The findings highlighted the impact that AD has on family dynamics
and how these shape family responses to living with this condition. Some family
dynamics were and remained close, others had always been and remained
conflicting, some dynamics remained constant whilst others changed. A major
finding of the study was the lack of professional support that all families
experienced leaving them ‘feeling abandoned’.
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The study provides valuable new insights into the nature of family relationships
when living with AD, the impact the condition has on family dynamics and the
ways in which family works to keep things in balance in the face of uncertain and
constantly evolving challenges. Implications for policy, practice, education and
further research are considered.
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ACKNOWLEDGEMENTS
Firstly I would like to pay tribute to the family participants in this study, who
invited me into their homes, and willingly gave their time and knowledge, shared
their particular stories and experiences and taught me so much. Without their
involvement, cooperation, reflections and constructive feedback this study would
not have been feasible and completed.
I would like to express my deepest gratitude to my supervisors, Prof. Dr. Mike
Nolan and Dr. Ana Canga for their encouragement, endurance and expert advice
throughout this learning experience. Thank you for questioning my work and
guiding my reflection. Although at times the process was arduous, I have learnt
that reflection is the way for positive change.
My sincere thanks to the University of Sheffield and the University of Navarra for
extensively contribute to my personal and academic growth, providing me with
significant learning opportunities.
I also appreciate the collaboration of the staff of the memory unit of San
Francisco Javier Psychogeriatric Centre and the Association of Relatives of
People with Alzheimer's of Navarra (AFAN) along the research process.
Thanks also to all my colleagues, classmates and friends who have supported
me along the way and given me encouragement, valuable comments and help
throughout the study period.
Finally this study and thesis would not have been completed without the absolute
support and understanding of my family over the last few years. My sincere
gratitude is also extended to them, who have served as a stimulus to continue
and persevere in my work.
Thanks to all people who in one way or another have walked this learning path
with me.
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CONTENTS
Page no.
ABSTRACT iii
ACKNOWLEDGMENTS v
CONTENTS vii
LIST OF ABBREVIATIONS xiii
LIST OF TABLES AND FIGURES xiv
LIST OF APPENDICES xv
INTRODUCTION
Personal Motivation for Undertaking the Research 2
Outline of the Thesis 5
CHAPTER 1 DEMOGRAPHIC AND EPIDEMIOLOGIC TRENDS
ST
IN 21 CENTURY: CHALLENGES FOR AN AGEING SOCIETY
Introduction 7
1.1 Current Demographic Trends: Population Ageing 8
1.2 Epidemiologic Transition: Long Term Conditions and
11
Dependence
1.2.1 Family Care and Older People 12
1.3 Meeting the Challenges of an Ageing Population, Long
14
Term Conditions and Old-Age Dependence
1.3.1 Family-Care Support Policies 16
Summary 18
CHAPTER 2 DEMENTIA AND ALZHEIMER’S DISEASE: AN
OVERVIEW
Introduction 19
2.1 Dementia and AD: Conceptualization and Epidemiology 20
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2.2 Current Dementia Policy and Plans 25
2.2.1 Health and Social Care Systems in Dementia 26
2.3 The Alzheimer’s Care Model in Spain 30
Summary 30
CHAPTER 3 FAMILY CARE AND ALZHEIMER’S DISEASE: A
CONSIDERATION OF THE LITERATURE
Introduction 33
3.1 The Role of the Literature in GT 34
3.2 Framing the Study: Family and Family Care 36
Conceptualization
3.2.1 Defining the Family 36
3.2.2 What Do We Mean by Family Care? 38
3.3 Literature Search Strategy 43
3.4 A Balanced Picture of Family Caregiving in AD 46
Factors Influencing the Experience 47
3.5 Support Intervention in AD Family Caregiving as it unfolds 51
over time
Major Gaps in Existing Support Interventions 53
3.6 Advocating a Family System Approach in Family Care in 56
AD
3.7 Literature Review Summary and Conclusion 57
3.8 Sensitising Concepts and Foreshadow Questions Guiding 58
the Study
CHAPTER 4 METHODOLOGY
Introduction 61
4.1 Qualitative vs. Quantitative Research Paradigms 62
4.2 Why Use Constructivist GT in this Study? 65
4.2.1 Constructivist Inquiry: Ontological and Epistemological 67
Assumptions
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4.3 The Defining Traits of GT 68
4.3.1 Theoretical Sampling 69
4.3.2 Constant-Comparative Method (CCM) 70
4.3.3 Abductive Reasoning 71
4.3.4 Active Role of Participants 71
4.4 Implementing GT Methods in this Study 72
4.4.1 Research Context and Study Setting 73
4.4.2 Access: Sample and Sampling 74
Study Participants 75
Access to Participants 76
Sampling the ‘Whole’ Family 77
4.4.3 Data Collection 77
In-depth Interview 77
The Interview Process 81
Writing Field-notes 85
The Logistics of Data Collection 86
Theoretical Sampling 88
4.4.4 Data Analysis 90
Data Preparation 91
Coding 92
Initial Codification 93
Focused Coding 95
Memo-writing 96
4.4.5 Co-construction of the Findings 97
Co-constructing with Participating Families 97
Co-constructing with New Family Caregivers of People with 98
AD
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Focus Groups 98
Theoretical Saturation 100
4.5 Ethical Issues in Conducting the Study 101
Ethical Approval and Informed Consent 102
Data protection, Anonymity and Confidentiality 104
Ethics in the Interview 104
4.6 Ensuring Rigour of the Study 106
Summary 108
CHAPTER 5 FAMILY DYNAMICS AND LIVING WITH AD:
SEVEN FAMILY CASE STUDIES
Introduction 109
5.1 Socio-demographic Characteristics of Study Participants 109
5.2 Family Case Studies 111
5.2.1 The Armendariz Family 112
5.2.2 The Blasco Family 119
5.2.3 The Cervera Family 127
5.2.4 The Dominguez Family 132
5.2.5 The Estevez Family 138
5.2.6 The Gonzalez Family 143
5.2.7 The Jimenez Family 148
5.3 Impact of AD on Family Dynamics 154
5.3.1 Close Dynamics at the Start and Throughout the Experience 155
5.3.2 Close Dynamics at the Start which Became Conflicting 156
5.3.3 Conflicting Dynamics at the Start and Throughout the 157
Experience
5.3.4 Conflicting Dynamics at the Start which Became Closer 158
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