Tell Me What it s Like to be Here

Transcription

1 Tell Me What it s Like to be Here A psychosocial study of the care relationship in residential care homes for people with dementia UK Dementia Congress, November 2016 Esther Ramsay-Jones

2 A Psychosocial Study of the Care Relationship in Residential Care Homes for People with Dementia Why? 64% of older adults living in a care home context have some form of dementia. Of the 17 recommendations in the National Dementia Strategy (2009), there is a focus on better care in care homes. Prime Minister s Challenge on Dementia for 2020 demonstrated that research in care homes was increasing. Quality of care relationship implicitly high on the agenda of policy makers. YET what constitutes quality within such a relationship is rarely defined.

3 How to get at quality? Psychoanalytically informed organisational observations in two care homes for older people Free association interviews with staff and residents in each home Analysis of national and local dementia care policy: critical history

4 Importance of organisational culture Supports the relational or undermines it? Time? Containment (Bion, 1962) or not? Defensive functioning?

5 Where is organisational culture? Organisation-in-the-mind' is about what is happening inside my own head - it is my reality - and has to be distinguished from any other reality 'out there'. It is the idea of the organisation which, through experiencing and imagining, forms in my inner psychic space and which then influences how I interact with my environment (Hutton, Bazalgette & Reed, 1997, p2; Armstrong, 2005).

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7 Organisations cont A kind of psycho-social field Possibly addresses something of the relationality of inner, personal worlds and social worlds Hinshelwood & Skogstad (2000) Davenhill (2003; 2009); Datler (2009); Liveng (2012)

8 The observer role Reverie Understanding Receptivity Awareness Apart but not defended

9 Dorothy and Noticing Dorothy is watching all the while. She raises up her hand, and makes a tweeting bird shape with it. Her eyes are glued on the staff talking behind the nurses station. What you, what you, what you, what you saying? What you doing, what you doing? she asks out loud. No one responds Can you hear me, can you hear me? she says. Dorothy opens her mouth wide, and lets out a silent scream. She drops her head down and rests her chin on her right hand. She stays in that position, looking down at her stomach, her breath up and down. She slowly begins to close her eyes.

10 Daphne and Play Hey ho the Barley Mow, says Daphne at the top of her voice, repeating one of her favourite expressions, one we ve already seen this morning. Hey ho the Barley Mow, says Lynn. Hey ho the Barley Mow You know Daphne, I can t stop saying that, she says. It s really stuck in my head. Lynn moves closer to Daphne, putting an arm gently around her shoulders. Their heads almost meet, touching. Daphne, you are so much fun. With the bum, bum, bum, says Daphne

11 Quality encounters Different ways in to intimacy: play, bodywork, feeding, mirroring, interruption Defensive functioning at level of organisation widereaching anxieties about getting it right preventing spontaneity Noticing and not noticing; what can be attended to? Curiosity and its relationship to empathy

12 Free Association Narrative Interviews Hollway & Jefferson (2000) Interviewed 17 care staff and 13 residents Asked Tell me what it is like to be here?

13 Assumptions of FANI Endebted theoretically and methodologically to psychoanalysis Subjects here constituted psychosocially Follows an emotional rather than cognitive logic (Hollway & Jefferson, 2000, p 152) Research reflexivity situated researcher assumed

14 Diane on Time You get these super, super people, following routines, inflict their way regardless of how that person feels You re getting up now, come on I m not like you, I got six up this morning and you only managed four. And I think shit only managed four, didn t hurt anybody, didn t bully anybody, didn t ride roughshod over anybody s needs. Treated them the same as I would treat my own mum and dad.

15 Gemma on Roles I think it is back-breaking work Literally. There s not enough carers, even in a care home that s fully staffed I don t think there s never enough. You need that People tend to run around and pass people in the corridors, say hi as they re going past. They don t really as a carer they always seem, it s that side of them They re more like parents. I m doing the nice things, taking people out, doing activities, more one-to-one time.

16 Chaya on Mother I love working with them, it s but if you don t understand them, if I didn t have the experience it d be difficult it would have definitely been difficult like with mum, like when she had those anxious moments and she was walking around and I used to get, get actually, sometimes I d get a little bit angry, I d say, mum I just told you now please sit down. I did not know, I did not know that they had anxious moments and I did not know how to approach (dog squealing) and mum was when I was looking after mum but now I ve got knowledge as I entered a home I could feel my mum s presence and that s how I got stuck in to it.

17 April on Interruption But it s like he cannot express himself so you have to stop, to listen, engage with him and just go with him and he s only one of many. Oh I can t get it out, he says, and when he can t get it out he will let out one or two swear words because he cannot verbally express what he wants to tell you This needs time. You cannot rush care, you cannot compromise care.

18 Sophia on Death It s very difficult when we have a resident who gives up and they say I think it s my time ; I m not doing anything else, I just want to go, I am tired of living. it s not a work where we deal with machines, we deal with emotions. And when we deal with the emotions of someone else we need to deal with the emotions of ourselves and it s not easy. And sometimes we need a break, a holiday just to focus on something else to recover and come back but if we like what we do we manage to do it

19 Sue on Witnessing it is very nice to have somebody to talk to. It is very nice to have you here I ve never had such a type of a reception from anyone. What do you think we could do? Then we get there I wouldn t know how to get there, now Very sad (she is crying) when people disappear. She takes deep breaths. She clasps her hands tightly together and starts to look out of the window again. Home is mother, the university. The time that used to go.

20 Maude on Play Everyone that comes in, you know, they re all young and I let them just say hello and all the rest of it to enjoy the short time they are here with you That s my photograph. These are all my little precious things. They re nice if children come in I let them play with them for a little while That s Scotty. This is Quack Quack Hello quack quack. (She repositions Scotty and Quack Quack so that they look like they are talking). There they are having a chat.

21 3 Major Themes Time Aliveness and death The maternal/matrixial fields

22 Limitations and further work Two different organisations Observed the organisation through only two residents: one mobile and one immobile Overgeneralisations micro to macro Action research: follow up post reflective practice group for staff?

23 Findings for policy More explicit about the care relationship: especially the emotional range but also bodywork/touch Is the organisation capable of bearing witness to the experiences of staff and residents? The mothers who do the mothering? How do humans connect? Respecting dependency and failings as well always implied in the relational.

24 There s a kind of odd poetry in dementia that picks out jagged, glittering pieces of truth, and makes you have to reassemble them. You have an open heart she d say to me. You can sense things. I can sense things too. It was the closest we d ever been, and probably the closest we would ever be. It was as deeply satisfying as it gets JACKIE KAY, poet (writing about her mother) from Red Dust Road (Picador) p. 86

25 Experience-near research sparked poetry blog:

26 Some references Baraitser, L. (2008) Maternal Encounters: The Ethics of Interruption. London: Routledge Bion, WR. (1962) Learning from Experience. Maryland: Maresfield Library Datler, W.; Trunkenpolz, K.; Lazar, R. (2009) An exploration of the quality of life in nursing homes: the use of single case and organisational observation in a research project. Infant Observation, 12: 1, Davenhill, R. (2003) Looking into later life: psychodynamic observation and old age. In Psychoanalytic Psychotherapy, Volume 17, Issue 3, Ettinger, B. (2006) Matrixial Trans-subjectivity. In Theory, Culture & Society 23(2 3) Hinshelwood, RD. & Skogstad, W. (2000) Observing Organisations. London: Routledge Hollway, W. & Jefferson, T. (2000) Doing Qualitative Research Differently: Free Association, Narrative and the Interview Method. London: Sage Publications Liveng, A. (2012) Why do care workers withdraw from elderly care? Researcher s language as a hermeneutical key. In Journal of Research Practice, Volume 8, Issue 2, 1-14 Menzies Lyth, I. (1959) 'The Functions of Social Systems as a Defence Against Anxiety: A Report on a Study of the Nursing Service of a General Hospital', Human Relations 13: ; reprinted in Containing Anxiety in Institutions: Selected Essays, vol. 1. Free Association Books, 1988, pp Ramsay-Jones, E. (2015) Careful Engagement: Can the work of Ettinger, Klein and Bion help us to understand the relational field in dementia care? In Psychodynamic Practice, Vol 21, Issue 3

27 Faculty of Social Sciences The Open University Walton Hall Milton Keynes MK7 6AA