EXPERIENCES OF SPOUSES CARING FOR THEIR DEMENTIA OF ALZHEIMER'S TYPE ...

185 Pages·2016·1.58 MB·English

EXPERIENCES OF SPOUSES CARING FOR THEIR DEMENTIA OF ALZHEIMER’S TYPE
PARTNERS: A SOUTH AFRICAN PERSPECTIVE

by

MELISSA VALOO

submitted in accordance with the requirements for
the degree of

MASTER OF ARTS

In the subject

PSYCHOLOGY

at the

UNIVERSITY OF SOUTH AFRICA

SUPERVISOR: Christine Laidlaw

February 2016
DECLARATION

Name: _Melissa Valoo______________________________________________

Student number: _36229679________________________________________________

Degree: _Master of Arts Psychology___MA (Psychology)___________________

Exact wording of the title of the dissertation or thesis as appearing on the copies submitted for
examination:

The experiences of spouses caring for their Dementia of Alzheimer’s Type partners: A South

African perspective

I declare that the above dissertation/thesis is my own work and that all the sources that I have
used or quoted have been indicated and acknowledged by means of complete references.

________________________ __15/02/16________
SIGNATURE DATE
UNIVERSITY OF SOUTH AFRICA

KEY TERMS DESCRIBING THE TOPIC OF A DISSERTATION/THESIS

Title of thesis:

THE EXPERIENCES OF SPOUSES CARING FOR THEIR DEMENTIA OF ALZHEIMER’S
TYPE PARTNERS: A SOUTH AFRICAN PERSPECTIVE

Key terms:

Dementia of Alzheimer‟s Type, activities of daily living, phenomenology, interpretative
phenomenological analysis, spouse caregiver, retrogenesis.
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Acknowledgments
I would like to thank my parents for providing me with the foundation. If it were not for this, I
would not be at this point of completing my Master‟s degree. You both have had enough faith in
me and I am extremely grateful for having parents like the both of you.
I would like to thank my supervisor for all the guidance given to me during this time. I have
learnt so much since starting this thesis. Thank you for motivating me and pushing me in the
final stages so I could complete this.
To my fiancé, Kamil, thank you for supporting me through the endless nights I spent researching
information. You have been a silent motivator and you gave me the space I needed to complete
this. I am grateful to have you in my life.
Thank you to the participants you took part in this study. You opened your homes, hearts and
lives to me. I learnt so much about this disease in just the short time spent. I admire you all for
the love, care and patience you have shown and continue to show your spouses. I applaud all
caregivers for the outstanding work that they do on a daily basis.
And, lastly, I would like to thank two people that have motivated me to research this topic. To
my granddad up in heaven and to my grand mum, you both are the reason for this study. It will
be my life‟s aim to help people in this situation and to educate people on this illness.
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Abstract
Dementia of Alzheimer‟s Type is a degenerative neurocognitive disease accounting for majority
of Dementia‟s. It affects millions of people worldwide and thousands of people in South Africa.
Apart from the economic burden this illness places on the country, it has detrimental effects for
those who provide care for individuals with this illness, who are mostly spouses. The spousal
caregivers bears great financial, social and emotional burden which worsens as the disease
progresses. The aim of this study is to phenomenologically explore and describe the lived
experiences of spousal caregivers in caring for the spouses with Dementia of Alzheimer‟s Type.
This South African study was therefore qualitative in nature and was conducted in the province
of KwaZulu- Natal, in the city of Pietermaritzburg. Eight participants were interviewed using a
semi-structured questionnaire. Data was analysed using interpretative phenomenological analysis
(IPA). The main findings of this study are the negative emotional affects that the caregiving role
creates. Caregiver stress and strain is experienced as well as the experiences of various losses
including lack of intimacy and ruined expectations for the future as the disease progresses. The
caregiving role also created negative implications for the social lives of caregivers and coping
mechanisms were seen to be very important.
Keywords: Dementia of Alzheimer‟s Type, activities of daily living, phenomenology,
interpretative phenomenological analysis, spouse caregiver, retrogenesis
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THE EXPERIENCES OF SPOUSES CARING FOR THEIR DEMENTIA OF
AZHEIEMER’S TYPE PARTNERS
Table of contents Page

Chapter 1
1.1. Rationale of the study and problem formulation 8
1.2. Problem statement 13
1.3. Research question 13
Chapter 2 - Literature Review
2.1. Definition of Dementia 14
2.1.1. Dementia of Alzheimer‟s Type 14
2.2. Prevalence, incidence and age 16
2.3. Diagnosis of Dementia of Alzheimer‟s Type 17
2.4. Stages of Dementia of Alzheimer‟s Type 18
2.5. Activities of Daily Living (ADL) and
Instrumental Activities of Daily Living (IADL) 20
2.6. Formal care services 21
2.6.1. Respite programmes 21
2.6.2. Psycho-educational programmes 25
Chapter 3 – The Dementia of Alzheimer’s Type spousal caregiver
3.1. Definition of the caregiver 28
3.2. Profile of the caregiver 29
3.3. Role of the caregiver 30
3.4. Caregiver burden 31
3.5. Depression and health of the caregiver 35
3.5.1. Depression of caregiver 35
3.5.2. Health of the caregiver 36
3.6. Loneliness, grief and isolation in the caregiver 36
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3.7. Stress and the caregiver 39
3.8. Coping mechanisms and the caregiver 43
3.8.1. Social support 43
3.8.2. Faith in coping 45
3.9. The impact of Dementia on marriage 45
3.9.1. The decrease in intimacy and sexuality 45
3.10. Retrogenesis and the Dementia of Alzheimer‟s Type caregiver 48
3.10.1. Cognitive retrogenesis 48
3.10.2. Functional retrogenesis 49
3.11. Finances and the Dementia of Alzheimer‟s Type caregiver 49
Chapter 4 - Research Methodology
4.1. Epistemology 51
4.2. Qualitative research approach 55
4.2.1. The Intpretative paradigm and Phenomenology 57
4.2.2. Self-reflexivity 58
4.3. The research design 60
4.3.1. Sampling 60
4.3.2. Ethical considerations 63
4.3.3. Research procedure 66
4.3.4. Method of data collection 67
4.3.5. Method of data analysis 68
4.3.6. Limitations of Interpretative Phenomenological Analysis 72
4.3.7. Trustworthiness of data 73
4.3.7.1. Credibility 73
4.3.7.2. Transferability 75
4.3.7.3. Dependability 77
4.3.7.4. Confirmability 78
4.3.7.5. Enhancing quality 79
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Chapter 5 – Findings and Discussion
5.1. The Loss 84
5.1.1. Ruined expectations 84
5.1.2. Loss of the spouse 86
5.1.3. Loss of marital intimacy/companionship 91
5.1.4. Loss of self 93
5.2. Caregiver stress 94
5.2.1. Assisting with activities of daily living 94
5.2.2. Increased time spent on caregiving 98
5.2.3. Lack of knowledge of Dementia of Alzheimer‟s 100
5.2.4. Impact on employment 101
5.2.5. Financial implications 103
5.2.6. New roles for spouse as caregiver 105
5.3. Strain of caregiving 108
5.3.1. The strain of witnessing the deterioration of the spouse 108
5.3.2. A fear of the worst 110
5.3.3. Caregiver death 111
5.4. Love as a motivating factor 112
5.5. Retrogenesis 114
5.6. Decrease in social activities 116
5.6.1. Behaviour of the spouse 116
5.6.2. Seeing to the needs of the spouse 117
5.6.3. Losing friends 117
5.7. Coping mechanisms 118
5.7.1. Need for relaxation/alone time 118
5.7.2. Support 120
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Chapter 6 – Conclusion
6.1. Overall findings 129
6.2. Limitations of the study 133
6.3. Future recommendations 134
References 135
List of Appendices
Appendix A: Letter to organisation/hospital 151
Appendix B: Information letter 154
Appendix C: Informed consent 156
Appendix D: Consent to audio-recording 158
Appendix E: Semi-structured interview 160
Appendix F: DSM-5 criteria for Dementia of Alzheimer‟s Type 162
Appendix G: Functional Assessment Staging Tool (FAST) 164
Appendix H: Revised Memory and Behaviour problem checklist 165
Appendix I: Extracts from journal 167
Appendix J: Summary table of themes 172
Appendix K: Jean Piaget‟s developmental levels and corresponding stages 179
of Alzheimer‟s disease
Appendix L: Process notes on research process 181
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Chapter 1: Introduction
1.1 Rationale of the study and problem formulation
Dementia refers to a progressive loss of one‟s memory (Poirier & Gauthier, 2011) and
Alzheimer‟s disease is seen as part of the large family of the various Dementias. The disorder
contributes greatly to interdependency and disability (Prince, Bryce, Albanese, Wimo, Ribeiro &
Ferri, 2013) and also produces a sense of vulnerability in the care recipient (Hill, 2015).
Dementia of Alzheimer‟s Type is the most common with sixty to seventy percent of known and
medically diagnosed cases (Poirier & Gauthier, 2011). Dementia of Alzheimer‟s Type has been
very often dismissed as being part of old age. However, over the last decade or two this disease
has recently come to the fore (Weiler, 2010). In some countries Dementia is therefore receiving
more attention by society, health care professionals, social care professionals and policy makers
than previous years (Ablitt, Jones & Muers, 2009). Countries in Europe, for example
Netherlands and the France have very powerful Alzheimer‟s societies where campaigns are
regularly implemented in order to raise public attention on Dementia (Moniz-Cook &
Manthorpe, 2009). This disease impacts on relationship in such ways to cause declines in
communication and overall happiness of individuals (Ablitt et al, 2009).
From a worldwide perspective, there is a large increase in the amount of people that are aged
sixty and over (Pillay & Maharaj, 2012). This is further shown by Pillay and Maharaj (2012) as
in the year of 1980 the ageing population was 378 million, three decades later this figure doubled
to 759 million and in terms of the future, the ageing population is expected to rise to two billion
people. Turkington and Mitchell (2010) state that in the year 2008 there were approximately 507
million older people that were over the age of sixty five in the world. The bulk of these
individuals were found in developing countries. By the year 2025 it is expected that at least
seventy percent of the world‟s population that are aged over sixty will be residing in developing
countries (Turkington & Mitchell, 2010). These authors further add that Asia, Latin America and
Africa will see the biggest rise in the ageing population. Similarly, Pillay and Maharaj (2012)
state that amount of the ageing population in developing countries will quadruple from the year
2000 to 2050. Taking this into account, the African continent will be mostly affected as most
countries in Africa fall within the less and least developed categories (Pillay & Maharaj, 2012).