rehabilitation in advanced dementia through computer-assisted exergaming with able-x

294 Pages·2017·3.49 MB·English

REHABILITATION IN ADVANCED DEMENTIA
THROUGH COMPUTER-ASSISTED EXERGAMING
WITH ABLE-X:
A COLLECTIVE CASE STUDY

By
JEANETTE DRURY-RUDDLESDEN

A thesis submitted to the Victoria University of Wellington
in fulfilment of the requirements for the degree of
Doctor of Philosophy
in Health

Victoria University of Wellington
2017
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ABSTRACT

Psychosocial interventions have been found to have similar outcomes as pharmacological
interventions for people with dementia (PWD). Cognitive stimulation has been found to
benefit cognition and there is evidence of self-reported quality of life (QOL) and wellbeing
improvement in this population. However, little research has been carried out in exploring
the association between QOL and computer-assisted exergaming in PWD. This study
explored if a programme of computer-assisted exergaming interventions, utilising
exergaming technology (Able-X), as an adjunct to existing activities and treatments, could
deliver improvements in QOL, including cognitive and physical function for 10 people
diagnosed with dementia.

An ontological approach of social pragmatism, combined with interpretive epistemology,
within a collective convergent parallel case study (CS) methodological design was used.
The study was carried out in three aged care residential units in New Zealand (NZ) that
catered for people with dementia. As far as possible the principle of errorless learning
(EL) (Terrace, 1963) was applied to the gaming environment when utilising the Able-X
gaming interface, which was not entirely errorless. EL is based on the principle that it is
difficult for people with impaired memory to remember and correct errors made while
trying to learn or relearn something.

Pre-and post-gaming qualitative data were collected through semi-structured interviews
with lead care staff and the next of kin for each participant, health record review,
observation of video footage of the gaming experiences and computer-generated
exergaming scores. In addition, several quantitative measures were used: Mini-Mental
State Examination-2-BV, Global Deterioration Scale, Functional Assessment Staging
Test, Quality of Life–AD, Cornell Scale for Depression in Dementia and the Rating Scale
for Anxiety in Dementia. Data were generated over a 10-month period (excluding
postscript comments). Data triangulation included application of the theoretical
framework of ‘embodied selfhood’ (Kontos, 2003, 2004) to demonstrate participants’
agency through intentionality of individualistic bodily movements, gestures and a sentient
affinity with the social environment, and through habitus of the social relational body that
implicitly understands the socio-cultural ways of being-in-the-world.
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The analysis revealed five emergent themes and six novel concepts that lend themselves
to further inquiry. The first three themes: ‘Sentient interaction with the social gaming
environment’, ‘Initiation and gaming advancement in partnership’, and ‘Levels of gaming
intentionality’, focused on the gaming environment, including gaming initiation,
engagement and progress. The other two themes: ‘Hand-eye coordination’ and ‘Aspects
of QOL’, evidenced the similarities and differences across each case in terms of the main
findings.

The key findings were significant improvements in hand-eye coordination, global QOL,
and anxiety levels. Furthermore, cognitive scores improved for five participants and
depression scores for seven participants, however, these improvements were not
significant. In addition, there was qualitative evidence of enhanced motivation to re-
engage in psychosocial social activities for all participants, improved behavioural
symptoms of dementia for nine participants, enhanced communication for nine
participants and enhanced functioning of skills relating to activities of daily living tasks
for seven participants.

This study demonstrated that improved hand-eye coordination and overall QOL were the
results of computer-assisted exergaming with Able-X and EL strategies. Irrespective of
the stage of dementia, significant benefits can be achieved through either solo or small
group facilitated exergaming sessions.

Key Words: Able-X (ableX), case study, computer, dementia, embodied selfhood,
errorless learning, exergaming, hand-eye coordination, quality-of-life, rehabilitation.
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ACKNOWLEDGEMENTS

First and foremost, I would like to acknowledge my gratitude to the primary
participants involved in this study. The moments we shared are captured and their
embodied selves will live on in the pages of this thesis and in the poem, I wrote, based on
my experience of doing this research (p. 231). My appreciation is also extended to the
family members and registered nurse informants.

I would like to thank my supervisors for their guidance, encouragement, and
support throughout the process of conducting the study and writing up of this thesis. To
my primary supervisor, Dr Kay de Vries, you shared not only your wealth of knowledge
and expertise, but also your unfailing support, constant encouragement, accessibility, sense
of humour and belief in me when I lost confidence in myself. To my secondary supervisor,
Dr Kathy Nelson, thank you for your encouragement, guidance, accessibility, kindness,
and positive attitude. I would also like to acknowledge the support and encouragement
given to me from friends and colleagues. Your words of encouragement kept me
motivated throughout this journey. Particular thanks go to Michelle Kim and Helen Rook,
I was blessed to have your company on this journey and no matter where we end up in the
world, and I know we will always be friends. Thanks also extend to my good friends
Sheila Hunt, for proof reading the first draft of my literature review, to Amy Jackson, for
proof reading second draft chapters 1, 3, and 4, and to Dr Jan Duke for proof reading the
full third draft of this thesis and for being such a motivating influence.

In addition, I would like to acknowledge Callaghan Innovation Fund, NZ, for
awarding me The Callaghan Innovation Scholarship 2014, established under the Callaghan
Innovation Act 2012, and for part funding this study. Acknowledgements are also
extended to Marcus King from Medical Device Technology, Callaghan Innovation, and
my industry mentors from Im-Able Ltd., Sunil Vather, and Elliott Kernohan.

Finally, to my wonderful family, both here in NZ and in the UK, a very big
Yorkshire “ta very much”, for your unconditional love, support and encouragement and to
the newest member of the family, my grandson Charlie, 19 months old already, I am so
glad you like books because this one is a big one!
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TABLE OF CONTENTS

ABSTRACT ........................................................................................................................ i
ACKNOWLEDGEMENTS .............................................................................................. iii
TABLE OF CONTENTS .................................................................................................. iv
LIST OF TABLES ............................................................................................................. ix
LIST OF FIGURES ............................................................................................................ x
GLOSSARY OF ABBREVIATIONS ............................................................................... xi
GLOSSARY OF TERMS ................................................................................................. xii
CHAPTER ONE: INTRODUCTION AND BACKGROUND LITERATURE ................ 1
1.1 Introduction to the thesis ...................................................................................... 1
1.2 Research interest from a professional perspective ............................................... 2
1.3 Dementia demographics and prevalence .............................................................. 5
1.4 Defining and diagnosing dementia ....................................................................... 6
1.5 Dementia subtypes ................................................................................................ 8
1.6 Dementia presentations ...................................................................................... 10
1.7 Pharmacological treatments ................................................................................ 12
1.8 Global disease care burden and economic impact .............................................. 14
1.9 Risk factors: non-modifiable and modifiable ..................................................... 16
1.10 Philosophical positioning of thought, thinking, mind and body ........................ 19
1.11 Dementia and stigma (external and internal) ...................................................... 20
1.12 Memory and learning ......................................................................................... 22
1.13 Quality of Life as conceptualised in this thesis .................................................. 25
1.14 Thesis overview .................................................................................................. 26
CHAPTER TWO: LITERATURE REVIEW ................................................................... 29
2.1 Introduction ........................................................................................................ 29
2.2 Non-pharmacological interventions ................................................................... 30
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2.2.1 Cognitive stimulation: The evidence base .................................................. 31
2.2.2 Reality orientation ...................................................................................... 35
2.2.3 Cognitive stimulation therapy..................................................................... 36
2.2.4 Cognitive training ....................................................................................... 37
2.2.5 Computer brain training and gaming environment ..................................... 38
2.2.6 Cognitive rehabilitation through computer-assisted exergaming ............... 39
2.2.7 Cognitive rehabilitation through errorless learning .................................... 45
2.3 Personhood and person-centred care .................................................................. 49
2.4 Kontos: Embodied selfhood ............................................................................... 53
2.5 Summary of key theoretical influences .............................................................. 62
2.5.1 Embodied selfhood (Kontos) ...................................................................... 62
2.5.2 Errorless learning ........................................................................................ 62
2.5.3 Multi-sensory enriched environment for cognitive rehabilitation .............. 62
2.5.4 Ethical and moral influences of Kitwood ................................................... 63
2.6 Chapter summary ................................................................................................ 63
CHAPTER THREE: METHODOLOGY AND METHODS ........................................... 65
3.1 Introduction ........................................................................................................ 65
3.2 Methodological considerations ........................................................................... 66
3.2.1 Ontology and epistemology ........................................................................ 66
3.2.2 Methodology: Making a case for Case Study ............................................. 70
3.2.3 Case study question, purpose and components ........................................... 72
3.2.4 Strengths and limitations ............................................................................ 73
3.3 Methods .............................................................................................................. 75
3.3.1 Recruitment strategy ................................................................................... 75
3.3.2 Exergaming with Able-X: The intervention ............................................... 79
3.3.3 Data collection ............................................................................................ 82
3.3.4 Data management ....................................................................................... 89
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3.3.5 Data analysis and interpretation .................................................................. 89
3.3.6 Trustworthiness and reflexivity .................................................................. 95
3.4 Ethical processes .............................................................................................. 102
3.4.1 Ethics approval ......................................................................................... 102
3.4.2 Consenting vulnerable adults .................................................................... 103
3.4.3 Assent and dissent ..................................................................................... 103
3.4.4 Proxy rater (advocate) ............................................................................... 104
3.4.5 Ubiquitous language of dementia ............................................................. 105
3.4.6 Te Tiriti o Waitangi .................................................................................. 106
3.5 Chapter summary .............................................................................................. 106
CHAPTER FOUR: PRESENTATION OF CASES ....................................................... 108
4.1 Introduction ...................................................................................................... 108
4.2 Cases ................................................................................................................. 108
4.2.1 Joy ............................................................................................................. 109
4.2.2 Iris ............................................................................................................. 116
4.2.3 Bill ............................................................................................................ 124
4.2.4 Thomas ..................................................................................................... 132
4.2.5 Maya ......................................................................................................... 140
4.2.6 Risa ........................................................................................................... 149
4.2.7 Clara .......................................................................................................... 156
4.2.8 Alfie .......................................................................................................... 165
4.2.9 Alana ......................................................................................................... 173
4.2.10 Florence .................................................................................................... 181
4.3 Chapter summary .............................................................................................. 191
CHAPTER FIVE: CROSS-CASE ANALYSIS ............................................................. 192
5.1 Introduction ...................................................................................................... 192
5.2 Demographic and personal characteristics ....................................................... 193
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5.3 Clinical characteristics ...................................................................................... 197
5.4 Engagement with computer-assisted exergaming with Able-X ....................... 198
5.5 Theoretical applications to five emergent themes ............................................ 199
5.5.1 Theme 1. Sentient interaction with the social gaming environment ........ 199
5.5.2 Theme 2. Initiation and gaming advancement in partnership ................... 201
5.5.3 Theme 3. Level of gaming intentionality: Influences ............................... 205
5.5.4 Theme 4. Hand-eye coordination ............................................................. 212
5.5.5 Theme 5. Aspects of QOL ........................................................................ 215
5.6 Chapter summary .............................................................................................. 220
CHAPTER SIX: CONCLUSIONS ................................................................................. 222
6.1 Introduction ...................................................................................................... 222
6.2 Methodological and method critique ................................................................ 222
6.3 Contribution to methodology and method ........................................................ 225
6.4 Contribution to knowledge ............................................................................... 226
6.5 Implications for practice ................................................................................... 229
6.6 Implications for industry .................................................................................. 231
6.7 Recommendations for further research ............................................................ 231
6.8 Future and potential publication ....................................................................... 231
6.9 Conclusion ........................................................................................................ 232
6.10 Dedication ......................................................................................................... 233
APPENDICES ................................................................................................................ 234
Appendix 1: Invitation to residential unit ................................................................... 234
Appendix 2: Access agreement .................................................................................. 236
Appendix 3: Invitation to NOK .................................................................................. 237
Appendix 4: Study information and consent .............................................................. 240
Appendix 5: Simplified information sheet for PWD .................................................. 244
Appendix 6: Proxy agreement .................................................................................... 246
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Appendix 7: Summary of Able-X ............................................................................... 247
Appendix 8: Health record review .............................................................................. 249
Appendix 9: Interview Schedule ................................................................................ 253
Appendix 10: Confidentiality agreement .................................................................... 256
Appendix 11: Ethics approval .................................................................................... 257
REFERENCES ............................................................................................................... 258
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LIST OF TABLES
Table 1. Psychosocial interventions ................................................................................. 30
Table 2. Four worldviews ................................................................................................. 66
Table 3. Research time frame ........................................................................................... 76
Table 4. Original inclusion and exclusion criteria ............................................................ 77
Table 5. Amended and final inclusion and exclusion criteria .......................................... 78
Table 6. Data collection strategies .................................................................................... 83
Table 7. Summary of data collection from all three sites ................................................. 88
Table 8. Secure storage and back up of electronic data .................................................... 89
Table 9. Example of raw data meaning unit to sub-theme of BPSD ................................ 93
Table 10. Procedure for exergaming with Able-X-initiation and progress ...................... 98
Table 11. Joy: Summary of baseline and end-point measures ........................................ 113
Table 12. Joy: Quality of life points change pre-and post-gaming ................................. 114
Table 13. Iris: Summary of baseline and end-point measures ........................................ 121
Table 14. Iris: Quality of life points change pre-and post-gaming ................................. 122
Table 15. Bill: Summary of baseline and end-point measures ....................................... 129
Table 16. Bill: Quality of life points change pre-and post-gaming ................................ 130
Table 17. Thomas: Summary of baseline and end-point measures ................................ 137
Table 18. Thomas: Quality of life points change pre-and post-gaming ......................... 138
Table 19. Maya: Summary of baseline and end-point measures .................................... 145
Table 20. Maya: Quality of life points change pre-and post-gaming ............................. 146
Table 21. Risa: Summary of baseline and end-point measures ...................................... 153
Table 22. Risa: Quality of life points change pre-and post-gaming ............................... 154
Table 23. Clara: Summary of baseline and end-point measures .................................... 161
Table 24. Clara: Quality of life points change pre-and post-gaming ............................. 162
Table 25. Alfie: Summary of baseline and end-point measures ..................................... 169
Table 26. Alfie: Quality of life points change pre-and post-gaming .............................. 170
Table 27. Alana: Summary of baseline and end-point measures .................................... 177
Table 28. Alana: Quality of life points change pre-and post-gaming ............................. 179
Table 29. Florence: Summary of baseline and end-point measures ............................... 187
Table 30. Florence: Quality of life points change pre-and post-gaming ........................ 188
Table 31. Demographic and personal characteristics of cases ....................................... 195
Table 32. Clinical characteristics of cases ...................................................................... 196
Table 33. Frequency of gaming with Able-X ................................................................. 199