THE LIVED EXPERIENCE OF RISK FOR A PERSON WITH A RECENT DIAGNOSIS OF DEMENTIA ...

279 Pages·2017·3.17 MB·English

by  Victoria University

THE LIVED EXPERIENCE
OF RISK FOR A PERSON WITH A RECENT
DIAGNOSIS OF DEMENTIA (Alzheimer’s type):
A LONGITUDINAL PHENOMENOLOGICAL
STUDY

Submitted by
Sally Osborne
BA (Social Science), Grad.Dip. Nursing (Gerontics)
Grad.Dip. (Aged Services Management)
MHlthSc. (Aged Services)

Submitted in fulfilment
of the requirements of the degree of
Doctor of Philosophy

College of Arts
Victoria University, Melbourne, Australia

November 2016
i

ABSTRACT

This longitudinal qualitative study explored the lived experience of risk for people
with a recent diagnosis of dementia (Alzheimer’s type). Risk is a concept used in
dementia research when examining choice and decision-making, and is primarily a
negative phenomenon associated with danger and hazard. In this study, risk is used
as an exemplar of autonomy and rights—rights to independent action taken with free
will and choice. These rights are entwined with key principles we live by: personal
autonomy—the right to act independently—to take a risk.

A hermeneutic phenomenological framework informed by the concepts and
understandings of its key thinkers Husserl, Heidegger, Gadamer and van Manen
was utilised in this study to uncover the meanings associated with risk for the
participants following a recent diagnosis of dementia. A purposive sample of ten (10)
participants engaged in four (4) conversations conducted every six (6) months over a
period of two years offered scope to monitor change within those meanings.

The findings indicate that risk was a normal part of life—indeed it was life. A
diagnosis of dementia however, was a portent for change whereby the upheaval and
uncertainty of everyday life precluded the desire to embrace risk. Paradoxically, risk
was also withheld from the participants by significant others, resulting in feelings of
impotency and distress. The lived experience of risk was explored at a time when
participants were harnessing their personal resources in order to tackle the transient
effects of living with dementia.
ii

STUDENT DECLARATION
iii

ACKNOWLEDGEMENTS

This journey has been undertaken in the pursuit of a fulfilled life for people living with
dementia. This vision was shared by my supervisor Associate Professor Jocelyn
Angus who was a tower of strength and inspiration throughout the five years of this
thesis. Thanks for your wisdom and your motivation to do justice to the stories told
by the participants.

My study acknowledges the wonderful support from the staff at Victoria University,
including the City Flinders Campus library staff especially Meg Weller.

Thanks to Max van Manen for occasional help via email.

To the participants and their families and friends who provided the data for this
study. They were generous and supportive and I will never forget them.

My husband John has been a source of strength and immeasurable support and
understanding throughout. I simply cannot thank him enough, and I am certain that I
could not have done this without him. His meals were prepared with love and our
daily gin and tonics together were a salvation! To my family who have all lived
alongside this thesis and provided support and encouragement. My message to my
beloved grandchildren is that age is no barrier to achieving your goals.

I dedicate this thesis to the memory of my dear mother Madge who taught her four
girls the importance of education. Her unstinting loyalty and belief knew no bounds.
My thesis richly acknowledges her and it is to her that I owe my greatest thanks.
iv

ABBREVIATIONS

AA Alzheimer’s Australia
CDAMS Cognitive Dementia and Memory Service
CDC Consumer Directed Care
DSM Diagnostic and Statistical Manual of Mental Disorders
GP General Practitioner
ICT Information and Communication Technology
NEAF National Ethics Application Form
NOK Next of Kin
WHO World Health Organisation
v

CONVENTIONS

The data from the study’s conversations have been transcribed literally. This allowed
for the natural flow of a narrative between two people, and highlighted
colloquialisms, slang and jargon which were foot noted for explanation. Brackets
were inserted to indicate accents, body language and props which were used in the
telling of a story. Language inconsistencies or difficulties associated with having a
diagnosis of dementia were also highlighted.

The following conventions within the transcripts facilitated understanding and
meaning.
Italics the words used by the study participants themselves
... material edited out within a conversation or a pause, contained in
original material
[ ] comments added by the researcher to provide explanation or
clarity
CAPITAL words or phrases emphasised by the study participants
LETTERS
Sic linguistic inconsistencies

The conversations were denoted as follows (1: 19-20, p. 3) where:
the interview number (1:)
the line numbers (1: 19-12,)
the page number (1: 19-20, p. 3)
Where more than one interview was included it was denoted by the use of a colon
(1:19-20, p. 3; 2: 34, p.11)

The use of the word wholistic is attributed to van Manen who incorporates the term
into the wholistic reading approach which refers to the text as a whole (see section
4.1.7). The word ‘holistic’ is used in reference to care and also to view a person
‘holistically’. The meaning is that the whole person is considered—their body, their
mind, their spirit including emotions.
vi

Within the conduct of this study, the term ‘conversation’ referred to the intimate
discussions which were held between the participants and myself. They were
referred to as interviews within the analysis which facilitated the discussion in which
there were often multiple references.
vii

LIST OF PUBLICATIONS AND AWARDS

‘A self-narrative of life-long disability: A reflection on resilience and living with
dementia’. J. Angus & S. Bowen-Osborne. Dementia, 13(2), 147-159.

Quiet, please, there's a lady on stage. Centering the person with dementia in a life
story narrative. Angus, J. & Bowen, S. Journal of Aging Studies, 25(2)110-117. .

Dementia Nursing. A Guide to Practice. R. Hudson (Ed.). Ausmed Publications
(2003)

Chapter 21- Leisure-S. Bowen (author)
Chapter 22- Creative Care-S. Bowen (author and editor).

Speaker: Hammond Care Dementia Conference, Sydney (June, 2012). ‘There’s a life
for us—if we risk it!’ Is a diagnosis of dementia a risky business? -

Speaker: Alzheimer’s Australia National Conference, Hobart (May, 2013). ‘Engaging
in research: a risky business?’

Speaker: Alzheimer Europe Conference, Malta (November/2013). ‘There’s a life for
us, if we risk it!’ Is a diagnosis of dementia a risky business?
viii

TABLE OF CONTENTS

ABSTRACT ................................................................................................................ i
STUDENT DECLARATION ........................................................................................ ii
ACKNOWLEDGEMENTS .......................................................................................... iii
ABBREVIATIONS...................................................................................................... iv
CONVENTIONS ......................................................................................................... v
LIST OF PUBLICATIONS AND AWARDS ............................................................... vii
LIST OF FIGURES................................................................................................... xiv
LIST OF TABLES ..................................................................................................... xv
CHAPTER 1 ............................................................................................................... 1
INTRODUCTION ........................................................................................................ 1
1.1. The paradox of ageing ................................................................................ 2
1.2. Dementia: a global health issue ................................................................. 3
1.3. Setting the context of this study ................................................................ 5
1.4. Aims of the study ........................................................................................ 5
1.5. Design of the study ..................................................................................... 6
1.6. Implications of the study ............................................................................ 6
1.7. Background to the study ............................................................................ 7
1.8. Philosophical approach to the study: situating phenomenology ........... 8
1.9. Understandings of dementia .................................................................... 10
1.9.1. Defining dementia ............................................................................................. 11
1.9.2. Dementia: the public discourse .......................................................................... 12
1.9.3. Centring the person in research and practice .................................................... 12
1.10. Understandings of risk ............................................................................. 13
1.10.1. Risk: a social construct ...................................................................................... 14
1.10.2. The embodiment of risk: a contemporary construct ........................................... 15
1.10.3. Constructs of ‘dementia’ and ‘risk’: can they co-exist? ....................................... 15
1.10.4. The reconciliation of social constructionism and hermeneutics .......................... 16
1.11. Positioning this thesis in context ............................................................ 16
1.12. Structure of the study ............................................................................... 18
CHAPTER 2 ............................................................................................................. 20
LITERATURE REVIEW ........................................................................................... 20
ix

2.1. Dementia: perspectives, constructs and manifestations ...................... 21
2.1.1. Dementia: a brief history .................................................................................... 21
2.1.2. Dementia: a critique of its biomedical construction ............................................ 22
2.1.3. Dementia: a multi-dimensional and contingent view .......................................... 23
2.1.4. Personhood: a legacy of Kitwood ...................................................................... 25
2.1.5. Person-centred care: a relational approach ....................................................... 26
2.1.6. Models of person-centred practice..................................................................... 27
2.1.7. Personhood: A relational form of autonomy ....................................................... 29
2.1.8. Personhood and the role of citizenship .............................................................. 30
2.2. Risk: perspectives, constructs and manifestations ............................... 32
2.2.1. Risk: an ordinary part of life ............................................................................... 34
2.2.2. The framing of good and bad risk ...................................................................... 35
2.2.3. Risk and professional practice ........................................................................... 37
2.3. Core tensions between constructs of risk and dementia ...................... 38
2.3.1. Risk enablement ................................................................................................ 39
2.3.2. The risk conundrum following a diagnosis ......................................................... 40
2.4. Situating the constructs of risk and dementia within this study .......... 41
CHAPTER 3 ............................................................................................................. 43
PHILOSOPHICAL UNDERPINNINGS ..................................................................... 43
3.1. Searching for a methodology ................................................................... 44
3.2 Qualitative perspectives ........................................................................... 45
3.3 Qualitative/quantitative perspectives and phenomenology .................. 46
3.4 Phenomenology and its underpinnings .................................................. 48
3.4.1. The seminal contribution of Husserl ................................................................... 48
3.4.2. Heidegger and Gadamer: a hermeneutic turn .................................................... 50
3.4.3. Heidegger’s conceptual vision ........................................................................... 51
3.4.4. Gadamer: a broadening of the vision ................................................................. 52
3.4.5. The foundational contribution of van Manen ...................................................... 54
3.5. Metaphors of understanding .................................................................... 56
3.5.1. Lifeworld ............................................................................................................ 56
3.5.2. Lived experience ............................................................................................... 57
3.5.3. Essence ............................................................................................................ 58
3.5.4. Phenomenological attitude ................................................................................ 58
3.6. Phenomenology: divergences and tensions .......................................... 59
3.6.1. Bracketing ......................................................................................................... 59