The needs and experiences of caregivers of persons with Alzheimer's disease living in black rural

236 Pages·2015·8.52 MB·English

Th e needs and experiences o f caregivers of persons with
Alzheimer’s disease living in black rural communities in
Mpumalanga

Mini-dissertation
Submitted for the partial fulfilment of the requirements for the degree
Master of Social Work in Health Care
MSW (Health Care)

by

Johan Nico Bosch

in the

Department of Social Work and Criminology
Faculty of Humanities
University of Pretoria

Supervisor: Dr. C.L. Carbonatto November 2014

© University of Pretoria
Faculty of Humanities
Department of Social Work & Criminology

DECLARATION OF ORIGINALITY

Full names of student: Johan Nico Bosch
Student Number: 10469924
Topic of mini-dissertation: The needs and experiences of caregivers of persons with
Alzheimer’s disease living in black rural communities in Mpumalanga
Declaration:
1. I understand what plagiarism is and am aware of the University’s policy in this
regard.
2. I declare that this mini-dissertation is my own original work. Where other
people’s work has been used (either from a printed source, Internet or any
other source), this has been properly acknowledged and referenced in
accordance with departmental requirements.
3. I have not used work previously produced by another student or any other
person to hand in as my own.
4. I have not allowed, and will not allow, anyone to copy my work with the
intention of passing it off as his or her own work.

___________________________ _____________________
Signature Date

Department of Social Work & Criminology Tel: Number 00 27 12 420 2325/2030 www.up.ac.za
University of Pretoria Fax: Number 00 27 12 420 2093
PRETORIA 0002
Republic of South Africa

© © University of Pretoria
ACKNOWLEDGEMENTS

I would like to express my sincere gratitude and appreciation to the following people
who in a way have contributed and inspired me to complete this study:

My family for their support, especially my mother who always believed in my abilities
and encouraged me to achieve my goals throughout my years of study. This mini-
dissertation is dedicated to her.

My supervisor, Dr Charlene Carbonatto, without whom this study would not be
possible, for her valuable guidance, inspiration and patience throughout.

My friends for their unwavering support during my studies. They are too many to
mention here.

My colleagues at Child Welfare South Africa and SAVF for their support and keeping
me motivated and focused to complete my studies.

Ms Lorna Kirsten (Alzheimer’s South Africa) and Ms Sarie van Niekerk (Age-in-
Action) for their support and assistance with identifying the participants in this study.

Ms Marita Oosthuizen and Mr Jan Potgieter for editing this mini-dissertation.

All the Alzheimer’s caregivers for the phenomenal task that they are performing for
the wellbeing of the greater society.

Above all, to God who made this mini-dissertation possible with His guidance, love
and protection.

In loving memory of …

Christiaan Naude 1956 – 2014 & Sr Maranda Barnard 1947 - 2012

© © UUnniivveerrssiittyy ooff PPrreettoorriiaa iii
ABSTRACT

Title: The needs and experiences of caregivers of persons with Alzheimer’s
disease living in black rural communities in Mpumalanga
Candidate name: Johan Nico Bosch
Department: Social Work and Criminology
Degree: MSW (Health Care)
Supervisor: Dr C.L. Carbonatto
The worldwide ageing of the population, with an increase in associated chronic
diseases, will inevitably escalate the demand for social work services at individual,
group and community level. Alzheimer’s disease is one of the conditions associated
with a population that is growing older. The disease was first described by Alois
Alzheimer in 1906 and is characterised by progressive declines in cognitive and
body functions, eventually resulting in death. It is estimated that 25 to 30 million
people worldwide suffer from Alzheimer’s disease and that in 2050, 106.2 million
people will be living with the disease, causing a looming global epidemic of
Alzheimer’s disease (Brookmeyer, Johnson, Ziegler-Graham & Arrighi, 2007:186).

At some stage in the disease’s process, most, if not all people with Alzheimer’s,
require some form of care. This care is generally provided by informal (family)
caregivers in the community. Providing care to an older person with Alzheimer’s
disease present multiple challenges with many factors influencing the caregiving
experience. When the needs of caregivers are not met, caregiver burden may result.
For the many families living in rural and impoverished areas, this additional
responsibility may come as an extraordinary burden and cause unwarranted stress.

The goal of the study was to explore the needs and experiences of caregivers of
persons with Alzheimer’s disease living in black rural communities in Mpumalanga.
The guiding research question was: What are the needs and experiences of
caregivers of persons with Alzheimer’s disease living in black rural communities in
Mpumalanga?

© © University of Pretoria iv
A q ualitative research approach was follow ed with a collective case study research
design. The population for this study was caregivers providing care to persons
diagnosed with Alzheimer’s disease living within the Ehlanzeni and Nkangala Rural
Districts Municipalities of Mpumalanga. Non-probability purposive sampling was
utilised to generate a sample.

Eleven participants who were caregivers of persons with Alzheimer’s disease living
in communities within the above-mentioned municipalities were selected. Semi-
structured individual interviews were conducted with participants. Interviews were
voice recorded with the permission of the participants, and were transcribed by a
contracted transcriber. The data gathered were analysed by the researcher and
themes and sub-themes were identified. The research findings were presented by
providing a profile of research participants followed by a thematic analysis of the
themes and sub-themes from the transcriptions. Literature control and verbatim
quotes were used to support the findings. The themes include the following: Theme
One – The Alzheimer’s disease caregiver; Theme Two – Indigenous issues with
regards to Alzheimer’s disease; Theme Three – Caregivers’ understanding of
Alzheimer’s disease; Theme Four – The impact of Alzheimer’s disease on the
caregiver and Theme Five – Support services in the community.

The conclusions of this study reflect that caregivers in black rural communities in
Mpumalanga have a number of needs and challenges in providing care to a person
with Alzheimer’s disease. Some of the challenges include the absence of caregiving
training, stigmatisation due to indigenous beliefs, traditional healers’ diagnosis and
treatment of Alzheimer’s disease, limited knowledge of caregivers about Alzheimer’s
disease, adverse physical, social and psychological outcomes associated with
caregiving, negative experiences with the public health care system, and the limited
availability and accessibility of support services in the community.

The recommendations offered by this study can be used by professionals working in
the field of gerontology to understand the needs and experiences of Alzheimer’s
caregivers. Social workers can use the recommendations to find ways to make their
services known to the communities, and improve their intervention and support to
these caregivers.
© © University of Pretoria v
LIST OF KEY TERMS

DEMENTIA

ALZHEIMER’S DISEASE

ALZHEIMER’S CAREGIVING

BURDEN OF CARE

PHYSICAL, PSYCHOLOGICAL AND SOCIAL IMPACT OF CAREGIVING

CAREGIVER SUPPORT AND INTERVENTIONS

ECOSYSTEMS PERSPECTIVE

GERONTOLOGY

SOCIAL WORK IN HEALTH CARE

© © University of Pretoria vi
TABLE OF CONTENTS

DECLARATION OF ORIGINALITY .............................................................................
ACKNOWLEDGEMENTS ......................................................................................... III
ABSTRACT .............................................................................................................. IV
LIST OF KEY TERMS ............................................................................................... VI
LIST OF FIGURES.................................................................................................... XI
LIST OF TABLES ..................................................................................................... XI
CHAPTER 1: INTRODUCTION ................................................................................. 1
1.1 INTRODUCTION ........................................................................................................ 1
1.2 DEFINITION OF KEY CONCEPTS .................................................................................. 5
1.2.1 NEEDS ................................................................................................................. 5
1.2.2 EXPERIENCES ...................................................................................................... 5
1.2.3 CARE................................................................................................................... 5
1.2.4 CAREGIVER .......................................................................................................... 6
1.2.5 ALZHEIMER’S DISEASE .......................................................................................... 6
1.2.6 RURAL AREA ........................................................................................................ 7
1.3 LITERATURE REVIEW ................................................................................................ 7
1.4 RATIONALE, PROBLEM STATEMENT AND RESEARCH QUESTION ..................................... 9
1.5 GOAL AND OBJECTIVES OF THE STUDY ..................................................................... 14
1.6 RESEARCH METHODOLOGY..................................................................................... 15
1.7 ETHICAL ISSUES .................................................................................................... 16
1.8 LIMITATIONS OF THE STUDY .................................................................................... 16
1.9 CONTENTS OF RESEARCH REPORT .......................................................................... 17
CHAPTER 2: ALZHEIMER'S DISEASE ................................................................. 18
2.1 INTRODUCTION ...................................................................................................... 18
2.2 DEFINITION OF KEY CONCEPTS ................................................................................ 19
2.2.1 ECOSYSTEMS PERSPECTIVE ................................................................................ 19
2.2.2 DEMENTIA .......................................................................................................... 19
2.2.3 ALZHEIMER’S DISEASE ........................................................................................ 19
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2.2. 4 CAREGIVER .......................................... .............................................................. 19
2.2.5 CAREGIVING ....................................................................................................... 19
2.2.6 GERONTOLOGY .................................................................................................. 20
2.3 MEDICAL TERMS .................................................................................................... 20
2.3.1 ACQUIRED IMMUNE DEFICIENCY SYNDROME (AIDS) ................................................ 20
2.3.2 AGNOSIA ........................................................................................................... 20
2.3.3 APHASIA ............................................................................................................ 20
2.3.4 APRAXIA ............................................................................................................ 20
2.3.5 COMPUTERISED TOMOGRAPHY (CT) ..................................................................... 20
2.3.6 DIABETES MELLITUS ............................................................................................ 20
2.3.7 DEOXYRIBONUCLEIC ACID (DNA) .......................................................................... 21
2.3.8 ELECTROENCEPHALOGRAPHY (ECG) .................................................................... 21
2.3.9 HUMAN IMMUNODEFICIENCY VIRUS ....................................................................... 21
2.3.10 HYPERCHOLESTEROLEMIA ................................................................................. 21
2.3.11 HYPERTENSION ................................................................................................ 21
2.3.12 LUMBER PUNCTURE .......................................................................................... 21
2.3.13 MAGNETIC RESONANCE IMAGING (MRI) ............................................................... 21
2.3.14 OBESITY .......................................................................................................... 22
2.3.15 POSITRON EMISSION TOMOGRAPHY (PET) ........................................................... 22
2.3.16 SINGLE-PHOTON EMISSION COMPUTED TOMOGRAPHY (SPECT) ............................. 22
2.4 THEORETICAL FOUNDATION – ECOSYSTEMS PERSPECTIVE ........................................ 22
2.5 DEMENTIA ............................................................................................................. 25
2.5.1 ETIOLOGY OF DEMENTIA ...................................................................................... 26
2.5.2 DEMENTIA OF THE ALZHEIMER’S TYPE ................................................................... 26
2.5.3 VASCULAR DEMENTIA .......................................................................................... 27
2.5.4 DEMENTIA DUE TO OTHER MEDICAL CONDITIONS .................................................... 27
2.5.5 INCIDENCE OF DEMENTIA ..................................................................................... 30
2.6 ALZHEIMER’S DISEASE ........................................................................................... 32
2.6.1 INCIDENCE OF ALZHEIMER’S DISEASE ................................................................... 34
2.6.2 CLINICAL FEATURES OF ALZHEIMER’S DISEASE ...................................................... 35
2.6.3 ETIOLOGY OF ALZHEIMER’S DISEASE..................................................................... 38
2.6.4 RISK FACTORS ASSOCIATED WITH ALZHEIMER’S DISEASE ........................................ 41
2.6.5 STAGES IN THE DEVELOPMENT OF ALZHEIMER’S DISEASE ....................................... 47
2.6.6 DIAGNOSIS OF ALZHEIMER’S DISEASE ................................................................... 51
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2.6. 7 MANAGEMENT OF ALZHEIMER’S DISEASE . .............................................................. 54
2.7 CAREGIVING IN THE CONTEXT OF ALZHEIMER’S DISEASE ............................................ 56
2.7.1 CAREGIVING AND THE ALZHEIMER’S DISEASE PATIENT ............................................ 58
2.7.2 DEMOGRAPHIC PROFILE OF THE ALZHEIMER’S DISEASE CAREGIVER ......................... 60
2.7.3 IMPACT OF ALZHEIMER’S DISEASE CAREGIVING ...................................................... 61
2.7.4 FACTORS INFLUENCING THE IMPACT OF CAREGIVING .............................................. 65
2.7.5 CAREGIVER INTERVENTIONS ................................................................................ 70
2.8 SOCIAL WORK AND DEMENTIA CARE ......................................................................... 73
2.9 SUMMARY ............................................................................................................. 74
CHAPTER 3: RESEARCH METHODOLOGY AND EMPIRICAL RESEARCH
FINDINGS ................................................................................................................ 77
3.1 INTRODUCTION ...................................................................................................... 77
3.2 RESEARCH APPROACH ........................................................................................... 78
3.3 TYPE OF RESEARCH ............................................................................................... 79
3.4 RESEARCH DESIGN ................................................................................................ 79
3.5 RESEARCH METHODS ............................................................................................. 80
3.5.1 POPULATION, SAMPLE AND SAMPLING METHOD ...................................................... 80
3.5.2 DATA COLLECTION METHOD ................................................................................. 81
3.5.3 METHODS OF DATA ANALYSIS ............................................................................... 82
3.5.4 TRUSTWORTHINESS OF DATA ............................................................................... 85
3.6 PILOT STUDY ......................................................................................................... 86
3.7 ETHICAL ISSUES .................................................................................................... 87
3.7.1 INFORMED CONSENT ........................................................................................... 88
3.7.2 PROTECTION FROM HARM .................................................................................... 88
3.7.3 PRIVACY, CONFIDENTIALITY AND ANONYMITY ......................................................... 88
3.7.4 DECEPTION OF PARTICIPANTS .............................................................................. 89
3.7.5 DEBRIEFING OF PARTICIPANTS ............................................................................. 89
3.7.6 ACTIONS AND COMPETENCE OF THE RESEARCHER ................................................. 89
3.7.7 RELEASE OR PUBLICATION OF THE FINDINGS ......................................................... 90
3.8 RESEARCH FINDINGS ............................................................................................. 90
3.8.1 BIOGRAPHIC PROFILE OF PARTICIPANTS ................................................................ 90
3.8.2 THEMES AND SUB-THEMES .................................................................................. 98
3.9 SUMMARY ……………………………………………………………………………... 140
© © University of Pretoria ix
CHA PTER 4: SUMMARY, CONCLUSION S AND RECOMMENDATIONS .......... 143
4.1 INTRODUCTION .................................................................................................... 143
4.2 SUMMARY ........................................................................................................... 143
4.2.1 THE OBJECTIVES OF THE STUDY ......................................................................... 143
4.2.2 GOAL OF THE STUDY ......................................................................................... 146
4.2.3 RESEARCH QUESTION ....................................................................................... 147
4.3 CONCLUSIONS ..................................................................................................... 149
4.3.1 CONCLUSIONS FROM LITERATURE STUDY ............................................................ 149
4.3.2 CONCLUSIONS FROM RESEARCH METHODOLOGY ................................................. 150
4.3.3 CONCLUSIONS FROM RESEARCH FINDINGS .......................................................... 151
4.4 RECOMMENDATIONS ............................................................................................ 163
4.4.1 RECOMMENDATIONS FOR PRACTICE ................................................................... 163
4.4.2 RECOMMENDATIONS FOR POLICY ....................................................................... 171
4.4.3 RECOMMENDATIONS FOR FUTURE RESEARCH ..................................................... 171
4.5 CONCLUDING REMARKS ........................................................................................ 172
REFERENCES ....................................................................................................... 174
LIST OF APPENDICES ......................................................................................... 209
APPENDIX 1: ETHICAL APPROVAL LETTER ...................................................... 210
APPENDIX 2: LETTER OF PERMISSION FROM AGE-IN-ACTION ...................... 212
APPENDIX 3: LETTER OF PERMISSION FROM ALZHEIMER'S SOUTH AFRICA
............................................................................................................................... 214
APPENDIX 4: INTERVIEW SCHEDULE ................................................................ 216
APPENDIX 5: LETTER OF INFORMED CONSENT .............................................. 220
APPENDIX 6: DECLARATION OF LANGUAGE EDITING ..................................... 224

© © University of Pretoria x