THE IMPACT OF ENGAGEMENT WITH THE ARTS ON THE HEALTH AND WELLBEING OF HOSPITAL INPATIENTS WITH DEMENTIA _______________________ A Thesis Presented to The Royal College of Music Centre for Performance Science ______________________ In Partial Fulfilment of the Requirements for the Award of Doctor of Philosophy _______________________ by Gregory Windle April 2019 Gregory Windle 2019 Keywords: arts-in-health; dementia; hospital; wellbeing; person-centred care i ABSTRACT The global rise of dementia has provoked a multidimensional response from research, policy, and practice sectors. Care for dementia in hospital settings is of particular concern given the outsized lengths of stay and readmission rates. To respond to the resulting care needs, arts in health programmes are increasingly implemented in hospitals, with a central focus on supporting those with dementia. This PhD aimed to explore patterns of engagement with the arts and their psychosocial effects on hospital inpatients with dementia, with a particular focus on the differences in psychological impact between traditional and digital modes of engagement. The study used a sequential mixed methods design organised across three inter-related studies. Study 1, a cross-sectional study of 123 inpatients, used a questionnaire battery consisting of validated measures for loneliness, quality of life, and depression alongside questions regarding current, past-year, and life course engagement with different art forms and cultural activities. High rates of loneliness and depression were measured among participants, but current individual engagement with the arts was associated with less loneliness and increased quality of life. Notably, passive and solitary activities such as reading and watching television were associated with lower levels of loneliness. Study 2, a focused ethnographic study of 43 participants, focused on digital and traditional arts and music programmes at an acute care NHS trust. This study found that the novelty of digital art led to focused individual engagement while traditional art groups were more likely to engage socially. Additionally, this study presented a model for patient experience of hospital art groups describing the discrete and interactive effects of arts engagement, social interaction, and environment. Study 3, a 3-arm controlled study with 90 participants, compared validated before and after measures of anxiety and wellbeing for traditional art, digital art, and control activities. This study found short term improvements in wellbeing in both digital and traditional art groups and lowered anxiety in the traditional art group compared with a control group. The thesis triangulates data from the studies to explicate patterns of arts engagement and their effects. A methodological contribution is made by using both qualitative and quantitative methods to connect intra-activity data with outcome measures. Theoretical contributions include considerations of the balance between novelty and familiarity in arts engagement, the roles of the environment and social engagement in a hospital setting, and the use of art for both reminiscence and expression in dementia. ii ACKNOWLEDGEMENTS If my experience with the arts is any guide, the most worthwhile endeavours take a team. I am so grateful for the study participants who opened themselves to exploration of the unknown through their enthusiasm for music, art, and conversation. Special thanks to the charity and NHS Trust staff who welcomed me into their work, especially Christina, Trystan, Andy, Caroline, Sarah, Cathy, and David. Without them, this research would not have been possible. My academic supervisors provided guidance, wisdom, and motivation throughout the process. Many thanks to Dr. Daisy Fancourt at University College London, Dr. Rosie Perkins at the Centre for Performance Science, and Professor Aaron Williamon at the Centre for Performance Science. Undertaking a PhD requires a full life investment. In addition to hospital- and library- based work, I spent a substantial amount of time writing this thesis in the living room and kitchen. And so, I am grateful to those at home for their loving encouragement in my life and work. I would like to thank Abaigh, who has provided support, both emotional and practical, just about every day. I also very much appreciate the support of my family and friends: Mom, Dad, Alex, Susan, and Will. I gratefully acknowledge the financial support I received from CW+ Charity, which provided a 3-year studentship including tuition fees and a stipend. Further thanks for additional financial support from the Royal College of Music Doctoral Bursary. iii TABLE OF CONTENTS ABSTRACT ..................................................................................................................................... i ACKNOWLEDGEMENTS ............................................................................................................ ii TABLE OF CONTENTS ............................................................................................................... iii LIST OF TABLES ........................................................................................................................ vii LIST OF FIGURES ..................................................................................................................... viii INTRODUCTION ........................................................................................................................... 1 CHAPTER 1 REVIEW OF THE LITERATURE ......................................................................... 11 1.1 Background to dementia ............................................................................................. 11 1.2 Symptoms of Dementia .............................................................................................. 11 1.2.1 Cognitive Impairment .................................................................................. 12 1.2.2 Functional Impairment ................................................................................. 14 1.2.3 Neuropsychiatric Symptoms – Behavioural and Psychological Manifestations ........................................................................................... 14 1.3 Challenges in Dementia .............................................................................................. 15 1.3.1 Wellbeing ..................................................................................................... 15 1.3.2 Depression ................................................................................................... 16 1.3.3 Quality of Life ............................................................................................. 18 1.3.4 Loneliness .................................................................................................... 18 1.3.5 Apathy and Engagement in Dementia ......................................................... 20 1.3.6 Anxiety in Dementia .................................................................................... 21 1.3.7 Self-identity and Personhood in Dementia .................................................. 21 1.3.8 Additional Risk and Protective Factors for Dementia ................................. 23 1.3.9 Conclusion – Challenges in Dementia ......................................................... 25 1.4 How Dementia is Affected by Environments ............................................................. 25 1.4.1 Acute Care Settings ..................................................................................... 26 1.4.2 King’s Fund Enhancing the Healing Environment ...................................... 30 1.4.3 Conclusion ................................................................................................... 30 1.5 Non-pharmacological Interventions for Dementia ..................................................... 31 1.5.1 Psychosocial Interventions .......................................................................... 31 1.5.2 Arts in Healthcare ........................................................................................ 33 1.5.3 Arts in Health Programmes for Dementia ................................................... 35 1.5.4 The Effect of Environments on Art and Artmaking .................................... 37 1.6 Systematic Literature Review – Arts in Health for People with Dementia in an Acute Care Setting ........................................................................................................... 38 1.6.1 Method ......................................................................................................... 38 1.6.2 Results .......................................................................................................... 40 iv 1.6.3 Systematic Review Discussion .................................................................... 54 1.6.4 Systematic Review Conclusion .................................................................... 56 1.7 Technology in Dementia Care .................................................................................... 57 1.7.1 Challenges in New Technology for Dementia Care .................................... 57 1.7.2 Tablet Use for Dementia Care ..................................................................... 58 1.7.3 Tablet Use in Hospitals ................................................................................ 60 1.8 Conclusion and Statement of Research Questions, Aims, and Objectives ................. 61 CHAPTER 2 METHODOLOGY