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The Time That Used to Go’: a Psychosocial Study of the Care Relationship in Residential Care Homes for People with Dementia

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The Time That Used to Go’: a Psychosocial Study of the Care Relationship in Residential Care Homes for People with Dementia Open Research Online The Open University’s repository of research publications and other research outputs ’The Time that Used to Go’: A Psychosocial Study of the Care Relationship in Residential Care Homes for People with Dementia Thesis How to cite: Ramsay-Jones, Esther (2018). ’The Time that Used to Go’: A Psychosocial Study of the Care Relationship in Residential Care Homes for People with Dementia. PhD thesis The Open University. For guidance on citations see FAQs. c 2017 The Author https://creativecommons.org/licenses/by-nc-nd/4.0/ Version: Version of Record Link(s) to article on publisher’s website: http://dx.doi.org/doi:10.21954/ou.ro.0000da69 Copyright and Moral Rights for the articles on this site are retained by the individual authors and/or other copyright owners. For more information on Open Research Online’s data policy on reuse of materials please consult the policies page. oro.open.ac.uk ‘The Time that Used to Go’: A Psychosocial Study of the Care Relationship in Residential Care Homes for People with Dementia Esther Ramsay-Jones Thesis submitted in partial fulfilment of the requirements for the award of PhD at the Open University, Faculty of Social Sciences, Psychology Department, May 2018. The candidate confirms that the work submitted is her own and that appropriate credit has been given where reference has been made to the work of others. Abstract This thesis aims to explore the relational field in dementia care by focusing on the particularity of experiences between carers and residents in two dementia care homes, while also keeping in view the social context of such experiences. Drawing on psychoanalytical ideas, the study examines in detail the dynamic psychic processes which took place between the people who lived and worked in both care settings, as well as noting the ways in which they came to inform the organisational culture of each site which was simultaneously constitutive of the relational field and also constituted by it. Using research methods influenced by psychosocial ideas, data was gathered through two psychoanalytically informed observations of the care settings, a series of loosely structured interviews with staff and residents and notes from a personal research diary. There is a discussion of Living Well: A National Dementia Strategy, which focuses on the appropriateness of the ‘living well’ discourse for people in advanced stages of dementia, in which the experience of decline, dependency and death is present. i Acknowledgements Thank you to Dr Gail Lewis and Dr Peter Redman for all their encouragement and for sharing their ideas, thoughts, and approaches. And to my lovely family, who have supported this endeavour all along the way. ii Table of Contents List of participants 1 Introduction The Socio-Political Background 6 This Project 10 Research Question 11 Outline of Chapters 12 Chapter 1: Literature Review Introduction 15 Relationality in Dementia Care 18 Mother-infant Relationships 23 Organisational Relatedness 35 Chapter 2: Methods and Methodology Ethics and Reflexivity 44 Infant Observation 46 Psychoanalytic Observations in Dementia Care 47 Interviews 59 Data Analysis 63 Chapter 3a: Findings Introduction 68 Themes 73 Time 76 Concluding Time 114 Chapter 3b: Findings Mother/s 115 Death 136 Conclusion 148 Chapter 4: Analysis Time 153 Mother/s 170 Death 178 Thinking about class and race 181 Chapter 5: Policy and Practice Introduction 187 The Strategy 189 Living Well 193 The Relational Field 205 The Workforce 211 Conclusion 216 Conclusion 219 References 223 Appendix A 232 Appendix B 233 Appendix C 235 iii iv List of Participants Winston Grove Ann Resident April Permanent Carer Bridget Housekeeper Chaya Permanent Carer Daphne Resident, subject of observation Diane Permanent Carer Dirk Resident Elaine Manager of the home Erica Original keyworker of Daphne Gaynor Resident Gemma Activities Co-ordinator Lynn Temporary Deputy Manager Margot Resident Maude Resident Sue Resident Ursula Part-time carer Violet Resident Wend Business Administrator Zalee Temporary Carer Whittinghall Amy Manager of the home Dorothy Resident, subject of observation Dr Dhillon Resident Dr Jesmond Resident Ellen Resident Evie Resident Nancy Senior Carer, subject of observation Prashid Permanent Carer Sonia Senior Nurse 1 I don’t know what to say Yep I’m making a statement. The Things between Us, Living Words: Anthology 1. Words of people experiencing dementia. (2014, p. 150) 2 Introduction I go total blank…Trying to work out what it’s like without the… most of the pieces aren’t here so I can’t put names to them. And we’re dropping downhill slightly. I planted these up but I can’t remember now what we are really looking at… and some of them are growing very well… that’s lovely. Some are not so good because they are not in a good place. And I start asking where I live and where I am and so on and I can’t tell you now let alone then. I can’t… I’ve forgotten about it all and why… I don’t feel I was together at all and my hair’s all over my eyes which is driving me crackers. Ellen, 18 August 2015, Whittinghall Care Home. The seed of this thesis was sown over a decade ago when I started work as a carer in a residential care home for older people in London. People had warned me that it would be hard work, and that I was over-qualified. My husband feared the work would be demeaning, as if it were also a narcissistic blow to our combined sense of self, and our aspirations for the future. There was, and perhaps still is, a sense of shame that surrounds care work with older people with dementia (Clough, 2016). It is viewed as low-status and carers are heard to describe themselves and their colleagues as ‘arse-wipers’ (Jervis, 2001, p. 89). As Clough (2016, p.33) points out, ‘In a culture where money determines value, many care workers feel grossly undervalued’ and, she goes on to write, quoting Sander et al (2011), As a society, we displace our discomfort with human frailty by removing it to hospitals and care homes, packaging it with targets that attempt to regulate and sanitise it and creating a culture of shame when these targets cannot be met. (Quoted in Clough, 2016, p. 33) Back in 2003, I did not reflect long on issues of institutional shame. I was also unaware that people with dementia in care homes, and their carers, could be split off from the rest of the wage-earning community, ghettoised in groups of failing populations. Nonetheless, I must have been unconsciously drawn to this hidden old age and to death and to experiences which would often escape words, try as you might to fix them down. Certain memories come to mind when I ask myself what drew me to care work for older people: me as a pre-pubescent child, noting my insignificance in relation to the full expanse of the planet and knowing that one day I would die; a neighbour in her seventies, who called me in from our street for lemon and honey tea, garishly dressed, recounting stories from her days as a fashion buyer; my grandmother, Faith1, who, with Alzheimer’s maintained a belief in both people and God, which seemed to help her to settle into a care home in Wales, easing her journey into death. Somehow, both these older women seemed to come to accept the expunging of breath and of existence – my 1 All names and identifying features have been anonymised in this thesis. 3 greatest fear. Perhaps for existential reasons I have needed to get closer to decline, dependency and death in order to know more about how any of us, as temporal beings, become reconciled with our own finitude. Choosing to work with people with dementia, in particular, relates consciously to my grandmother’s experience, and to the experience of confused voices and voicelessness. In this study, one of my prime concerns has been to find ways to make known those voices that either struggle to articulate in language their own experience or those who – like professional carers – are left silenced because society undermines their contributions, which cannot often be monetised. The experience of newborns, for me, is a powerful evocation of the need to make feelings known: the baffling cries of my own babies; my newborn self even, outside the order of words, a new Mum, anaesthetised, tired and in pain, her baby behind an incubator without her; Dad anxious and alone. And there back home, the newborn screaming, legs up to chest contorted in colicky distress and parents rocking and rocking and rocking her. All of these unknowns and imaginings play out when I begin to think about my reasons for entering the field of dementia care, leading me to ask questions of self and other, and of what it is to care, how hard it can be to do so. Yet questions about what constituted professional dementia care only really began to emerge when I met Melie, in London. Melie had thick white curled hair and it stayed on her head precariously like billowing candyfloss. She had her own teeth still but they were yellowing and cracked and uneven. She had small eyes that squinted, and which didn’t let much light in until, that is, we started to play and Melie burst into life with me. I was her keyworker, one of the first people I had ever keyworked. I felt unknowing and amateur, but with Melie I knew that we worked together. We would often walk around the home, making mischief. She would hide behind curtains and pop out, a glint of knowing in her eyes followed by lots of deep and meaningful laughter.
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