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A Sensory Ethnographic Study of Therapeutic Landscape Experiences of People Living with Dementia in the Wider Community

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A Sensory Ethnographic Study of Therapeutic Landscape Experiences of People Living with Dementia in the Wider Community Out and About: A Sensory Ethnographic Study of Therapeutic Landscape Experiences of People Living with Dementia in the Wider Community By Rahena Qaailah Bibi Mossabir (MA) Faculty of Health and Medicine Lancaster University Thesis submitted for the award of Doctor of Philosophy (PhD) September 2018 0 0 DECLARATION I declare that this thesis is all my original work and I am the sole author. This work has not previously been published or presented for an award. All sources are acknowledged as References. It has been jointly funded by the Economics and Social Research Council and Age UK Lancaster. 1 ABSTRACT Whilst ageing in place is considered important for a healthier and a better quality of life for older people, there is yet a dearth of evidence on how older people with dementia negotiate and experience the wider community. The aim of the present study is therefore to explore experiences of social and spatial engagement in the wider community for people living with dementia in order to advance understandings of how their interactions in and with community settings impact on their health and wellbeing. Drawing on the theoretical framework of therapeutic landscapes and a sensory ethnographic methodology, I provide social, embodied and symbolic accounts of people’s everyday experiences and pursuits of health and wellbeing within their neighbourhood and beyond. An in-depth examination of socio-spatial interactions of nine people with dementia, seven of whom participated with family carers, is conducted by use of innovative interview methods (including photo-elicitation and walking interviews), participant observations and participant ‘diaries’ (kept for a period of four weeks). The thesis presents three broad themes relating to participants’ interactions with and experiences of places beyond the home- the diverse and changing nature of people’s personal circumstances and conceptions of health and wellbeing; the interrelationship between people’s changing health needs, lifestyle choices and geographical area of activities and finally the social, physical and symbolic processes through which people maintain a sense of normality and stay connected. Together these themes illustrate the significance of a variety of places to the lives of people with dementia. The ‘shrinking world’ analogy associated with experiences of dementia is thereby considered through a more focused discussion on the active role people with dementia play in shaping their life worlds and their everyday interactions to meet their health and wellbeing needs. Further, by applying the concept of therapeutic landscape to experiences of people with dementia in the wider community, this thesis makes an important contribution to dementia research whilst also suggesting new directions for the therapeutic landscape scholarship. 2 ACKNOWLEDGEMENTS I am grateful to each and every person who has been involved in this journey with me; you have all contributed to the successful completion of my research in different ways. Without the words of encouragement from my family, friends and colleagues I may not have pursued this opportunity to do a PhD. My supervisors, Katherine Froggatt and Christine Milligan, thank you for your valuable guidance; you have helped me greatly through every stage of my work. I appreciate the time and effort contributed by the research participants as well staff and volunteers at the organisations/ groups that have supported me. Thank you to my husband and daughter for being so accommodating to the ‘fourth member’ of our family, that has been my PhD for the past few years. Finally, I would like to thank the Economics and Social Research council along with Age UK Lancaster for funding the project. 3 CONTENTS Declaration..............................................................................................................................................................................1 Abstract....................................................................................................................................................................................2 Acknowledgements.............................................................................................................................................................3 Tables and Figures ..............................................................................................................................................................8 CHAPTER 1. Introduction .........................................................................................................................................10 1.1 Prevalence of dementia ........................................................................................................................................10 1.2 Dementia Policy ........................................................................................................................................................11 1.3 Dementia Research .................................................................................................................................................12 1.4 Study Summary .........................................................................................................................................................12 1.5 Outline of Chapter ....................................................................................................................................................13 CHAPTER 2. Experiencing Health and Wellbeing with Dementia .......................................................16 2.1 Introduction ................................................................................................................................................................16 2.2 Conceptualising Dementia ....................................................................................................................................17 2.2.1 Dementia as a disease or illness? ......................................................................................................17 2.2.2 Psycho-social perspective ....................................................................................................................19 2.2.3 Socio-cultural context ...........................................................................................................................21 2.2.4 The body .....................................................................................................................................................23 2.3 Lived Experiences of Health and Wellbeing ..................................................................................................24 2.4 The policy context......................................................................................................................................................27 2.5 Conclusion ....................................................................................................................................................................30 CHAPTER 3. Emplacing Health and Wellbeing ...............................................................................................31 3.1 Introduction ................................................................................................................................................................31 3.2 Place and Relationality ...........................................................................................................................................32 3.3 Relationship between Health and Place .........................................................................................................36 3.3.1 Socio-spatial dynamics of health and wellbeing .........................................................................36 3.3.2 Psycho-social implications of place .................................................................................................38 3.4 Changing Experiences of Health and Place ....................................................................................................39 3.5 Conclusion ....................................................................................................................................................................40 4 CHAPTER 4. The wider community as a therapeutic landscape: A literature review .............42 4.1 Introduction ................................................................................................................................................................42 4.2 Methods..........................................................................................................................................................................44 4.3 Findings .........................................................................................................................................................................45 4.3.1 Conceptualising everyday places of wellbeing ............................................................................52 4.3.2 Therapeutic engagements and benefits .........................................................................................56 4.3.3 Methodological innovations and implications ............................................................................61 4.4 Conclusion ...................................................................................................................................................................64 4.4.1 Study aim and objectives .....................................................................................................................................67
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