Being here with you: An examination of the relational field in dementia care

Living well

Living Well with Dementia: A National Dementia Strategy, as the title and a co-authorship between Health and Social Care imply, is about joining up services to help people with dementia to ‘live well.’ The notion of ‘living well’ belongs to a campaigning context, notably from the Alzheimer’s Society. ‘Living well’ draws from a bio-psycho-social model, counter to a medical one, in which the person with dementia is considered as a bundle of symptoms. The ‘living well’ narrative is a destigmatising one. It assumes that people with dementia still wish to participate in things they find enjoyable; to be part of families and communities; that they are agential beings. For most people, particularly in the early stages, this resonates. However, a diagnosis of dementia can also prove to be devastating. The Strategy acknowledges this too and does not push for an omnipotent denial of the more painful aspects of dementia.

Nonetheless, ‘living well’ is linked to elusive concepts such as ‘quality of life’, possibly a ‘soft’ regulation against which services can be audited. Ideologically speaking, the proliferation of concepts such as ‘living well’ and ‘quality of life’ work in conjunction with a promotion of productive, active ageing and self-managing practices said to lead to well-being. Though its origins are in the campaigning voices of carers of people with dementia, and academics like Tom Kitwood, the ‘living well’ discourse can also be mobilised in favour of a neoliberal politics of the self.

Methodology

To examine the relational field and the dynamics that fed into the culture in two dementia care homes, this study involved conducting two long-term psychoanalytically informed organisational observations (Hinshelwood & Skogstad, 2000), which focused mainly on the experiences and relationships of two residents. Following this, a series of interviews inspired by the Free Association Narrative Interview technique (Hollway & Jefferson, 2000) the Free Association Narrative Interview technique was carried out, involving 17 staff and 13 residents at both sites. Informed consent was granted by all participants during the course of the study, and on a weekly basis with the residents I observed.

While the data from the FANI interviews was illuminating, this paper is limited to examining some of the observational material. Psychoanalytical organisational observations have a long and well-established history in health and social care settings since they are considered a way in to understanding both the conscious and unconscious processes involved in group behaviours. The observer adopts a stance of reverie (emotional openness) to her surroundings while also staying in role as an observer. This allows the observer to interrogate her own countertransference to what is witnessed, and to have some sense of how the organisation (members of staff and residents therein) might respond to the presence of an observer. For example, What do they do with her? Does she fill the care gaps? Is she viewed as a critical object, reflective of a culture of surveillance?

The observer pays particular note to that which is not spoken in words, too, and only writes up observations in non-theoretical language, having left the site under observation, in order to capture the phenomena without fixing it in a pre-defined set of meaning-structures. Others who have used observational approaches for understanding the nature of dementia care – Datler, Trunkenpolz, and Lazar (2009), Davenhill (2009) and Liveng (2012) – have made conclusions about defensive mechanisms written into care practice, systematically assembled at the level of the institution. Although I observed practices that allowed staff to protect themselves from some of the painful realities of working with increasingly dependent older people, who in some instances were close to dying, this paper’s aim is to think about conceptualisations found in the National Dementia Strategy. The paper seeks to investigate whether, though helpful, some notions require fleshing out, if we are to apply them to the care of people living in residential homes. I will begin with the idea of ‘living well.’

In my observations of Daphne and Dorothy, residents with dementia living in two different care homes (local government; private), I noticed that ‘living well’ with dementia in an institution was sometimes very hard to attain. ‘Living well’ – in a continuous way – was not always an appropriate frame through which to think about an institutional care experience. However, within daily contextual and temporal confusions, possibilities of brief encounters existed which allowed the residents to go on being, to feel accepted. I wondered at times if this were the closest someone could hope to get to ‘living well’; because no matter how hard care staff tried, the anxieties brought about by feelings of material and psychic displacement regularly interrupted any approximation of ‘living well’. Here is a good moment:

… Daphne stops at the senior carers’ office and waits. Two carers spill out of there.

They turn to Daphne and say, “Hello, Daphne.” She stands very still and makes a salute, raising her right hand to her head, bringing her heels together as if she is a soldier in the army. “Hello there,” she says. The carer, Erica, Daphne’s keyworker, laughs and mirrors Daphne’s movements, bringing her right hand to her head and bringing her heels together. “Good to see you,” Erica says.

“Always these smiling faces, how very nice. Good good fun,” says Daphne.

The temporary deputy manager, Anne, comes out of the room and says good morning to Daphne. “Hey ho the Barley Mow,” Daphne says at the top of her voice.

“Hey ho the Barley Mow,” says the deputy manager. “Hey ho the Barley Mow,” she says again. “You know, Daphne, I can’t stop saying that,” she says. “It’s really stuck in my head.”

Daphne looks a little more serious, making eye contact with the assistant manager. “I am sorry,” she says, “I am a silly sausage, I know.”

The assistant manager moves in closer to Daphne and puts her arm gently around Daphne’s shoulders and their heads look close together, almost touching. “No you’re not, Daphne, you are so much fun.”

“With the bum, bum, bum,” says Daphne, rhyming. She laughs out loud.

The deputy manager and Erica do too. The deputy manager is still hugging Daphne. “I think we have an awful lot to learn from you, Daphne, I really do.”

“Thank you,” Daphne says, “Every loves.”

Conversely, though, there were times when ‘living well’ was so far out of reach.

The carer explains to the woman watching television that it is soon to be lunchtime and so she moves the lady to the table with the other two women. Dorothy notices that the carer, Val, is back in the room and tries to get her attention by raising her hand high in the air. She is not seen. Now four members of staff are by the trolley discussing who is having what. Dorothy lets out a noise and raises her hand. Val comes along and says that it is soon lunchtime. “Lunch, lunch, lunch,” says Dorothy. The carer looks at me and asks if it’s all right to move her for lunch. I say I am not sure. The carer tells Dorothy the food is ready and starts pushing her to the table.

Dorothy is given a glass of orange juice by a nurse. Dorothy is now alone on a table. She makes a noise as if trying to get someone’s attention but nobody notices. She pulls her face back as if to make a scream but nothing comes out and tears come to her eyes. She stays still at the table. She pushes the orange juice away.

The waiter takes Dorothy over a bowl of tomato soup and she pushes it off the tablemat. There is some conversation behind about me having lunch next to Dorothy to help her to eat. The carer asks me if I could join her and have some soup and she might copy me.

I sit next to Dorothy, who shows no interest in eating. She looks sad.

In this particular home, most of the carers were in their early twenties and though proficient in much of their work, as an observer, many years senior, I was often left to sit with the resident I was observing and asked to calm her. I was filling in the gaps that the young staff, a very well-resourced and time-rich team, seemed reluctant to participate in – that aspect of care which involves silence, bearing witness, a taking in quietly of someone’s discomfort, an aspect of care that supports someone with dementia in a care home to ‘live well’. These components of ‘living well’ – the possibility of being seen – must be thought of outside the discourse of activity, autonomy and consuming.

Choice and control

In Dorothy’s vignette above we see that the amount of choice she has is minimal. It is me, the observer – conceived of perhaps as an auxillary mind capable of making choice – who is asked whether it is okay to move her. So despite ‘choice’ being so high on the policy agenda, the lived experience doesn’t always play out in this way.

Of all 17 objectives in the Strategy, objective 6 on personal budgets is most obviously tied to the notion of individualised ‘choice and control’. People with dementia are encouraged to have greater ‘control and choice’ over their care. Positioned as consumers of services, they enter a care marketplace. In this part of the Strategy, the ‘consumer–patient’ is presented as being able to choose/buy in services rationally. Implied in this process is the achievement of well-being. What seems to be absent in the narrative is the level of distress, madness, fear, pain, the feelings of dependency, that make rational choice difficult.

Dorothy and Daphne’s possible choices were limited, but in a care home context there are opportunities to express some autonomy. Owing to time constraints, and perhaps the ambivalence associated with working with people whose minds are steadily unbecoming, I sometimes witnessed carers remove those opportunities for ‘choices and control’. At times like these relationships entered into a power dynamic, and Benjamin’s (2006) doer-done-to scenarios emerged.

Nancy says that Dorothy’s hair is messy and she will get a comb. She walks in to the hair salon and comes back with a comb. She shows it briefly to Dorothy and goes to the back of her head and starts combing. “No, no, no,” says Dorothy, grimacing. “That hurts, hurts, hurts.”

“But it’s messy,” says Nancy. “It’s nearly done.”

“Don’t do it, don’t, don’t,” says Dorothy.

Nancy finishes the combing and then looks at Dorothy and says it’s better now, smiling. Dorothy shakes her head and quietly bends her head down. It looks as if tears are forming in her eyes. She brings her head back up and looks ahead. Nancy walks away without speaking, and heads down the corridor.

At other times, though, choice was offered – teas, coffees, coats on or off, blankets – and within a very limited sphere Dorothy and Daphne had some control. However, the experience of dementia is one that destabilises that part of us which might be independent. At base, someone with dementia is moving in the direction of greater dependence, which implies a gradual relinquishing of both ‘choice and control’. To whom we entrust that ‘control and choice’ is therefore potentially a risky business. This complexity is perhaps overlooked in the National Dementia Strategy.

Certainty

One of the focal points of the Strategy is the establishment of an efficient care pathway. The pathway is formalised as a joint enterprise between health, social care and the third sector, holding (Winnicott, 1973) the person with dementia, and their carers, without undue anxiety. Although the care pathway might be able to minimise some uncertainty in terms of systems and structure, Goodman (2015) points out that the notion of a pathway is problematic. A pathway implies a known and clear directionality, a telos that can be predicted, understood. This is not the reality, though, since no one knows the trajectory of any life.

To be in conversation with someone with dementia about what might be next and where appropriate care is available is one thing, and an important thing, but to imply that uncertainty can be managed structurally is another. A pathway, clear and decisive, is good, although it might also represent the anxiety professionals experience in relation to getting dementia care right. This is perhaps highlighted on page 47, which borrows from advertising-speak: ‘The right support, at the right time and in the right place … to give them choice and control …’. A recognition of someone with dementia as agential is essential in combatting objectifying practice, of course, but making things ‘right’ seems to set expectations high. Part of the work involved in professional dementia care involved, in some senses, the capacity to meet with failure and failings. It wasn’t about the heroics of doing, but also about sensing when people were unravelling and recognising that they might need, metaphorically speaking, holding together.

The following observation takes place after Daphne has been out with Michael, her long-term partner, and she has returned to the home.

“Um,” Daphne says, and smiles slowly again, as if there is pain in the vague memory of pleasure. A slow and pensive smile. “Will Michael come back here?”

“Michael knows you are here,” says the carer, “and he comes to see you here.”

Daphne looks puzzled. “Oh,” she says. “I just don’t know what to do. What am I supposed to do?”

The carer notices Daphne still has her coat on. “We are about to have lunch, Daphne. Will you let me take your coat off so that you can sit and have lunch, and it’ll still be kept lovely and clean, a million dollars?”

“Oh thank you, yes,” says Daphne.

“Ok let’s go and find a place for you to have lunch,” the carer says.

Daphne turns to the carer and asks, “Can she come too?”. She is referring to me. “Of course she can,” the carer says.

The carer slowly and gently unzips Daphne’s coat and at a careful speed and pace, takes the coat from Daphne’s shoulders and brings it from her arms. The carer folds the coat and places it over her arm, and with her other arm, invites Daphne to hold on to her as they walk towards the table at the back. “Would you like to sit here next to the gorgeous Eunice or here opposite?” she asks. Eunice looks up briefly and looks away. Daphne makes a semi-smile and says, “This will be all right,” and the carer slowly pulls the chair next to Eunice back and waits for Daphne to begin to manoeuvre herself down in to the chair.

However, the carer is able to take charge and guide her (a human pathway). Here lunch, something tangible, helps Daphne to become more oriented. The carer is able to physically find her a place, unconsciously aware of Daphne’s experience of lostness. Despite the gentle treatment of Daphne, there is no time to speak with Daphne about what might be painful for her: the loss of Michael, an external and internal object, able to give her some certainty about who she is.

It could be said that the current discourse around dementia tends to highlight potent aspects of subjectivity and disavows that which is frail, failing and struggling.

Relational fields

The relational field is made explicit in Objective 11. It focuses on ‘Maintaining good relationships between relatives … and people with dementia, (since it) benefits both parties.’ It supports the use of life story work as a catalyst for establishing relationships between care workers and people with dementia. Here there is a sense of the careful work that can go into care; the involvement, the ‘getting-to-know.’ Memory work demonstrates the temporal complexity involved in caring, and hints at the difficulty in connecting with someone with dementia in the later stages.

Interestingly, though, this tentative nod to the relational, to the sensitivity involved in good care, is undermined by the language chosen to represent carers, described as the ‘workforce’. This has connotations of the labour pool, manual work. The body work of care, then, is perhaps foregrounded over the emotional.

In contrast to the individuated voices of family carers, professional or paid carers are constructed as a ‘mass’. How then, if we are to think of Benjamin’s (2006) work on mutual recognition, is the care relationship constituted in the Strategy? In making use of the word ‘workforce’, a certain distance is implied. An I is in relation to an out of reach non-I, who does the work?

It would be reductive to suggest that this is the only portrayal of staff teams. Objective 13 clearly states the need for an informed ‘workforce’. There is an acknowledgement that support for staff through training is likely to improve staff morale and ease retention problems. The Strategy presents a tentative advocating voice: staff sometimes struggle with their work; that there are difficulties around continued motivation and burn-out; that carers have experiences that affect them too.

Objective 11, which focuses on care home contexts, recognises the constraints on staff: ‘staff enjoy providing opportunities of activity and occupation … but do not feel they have the time .’ Indeed, having myself carried out free association narrative (Hollway & Jefferson, 2000) interviews with care staff in residential care homes for older people, linear clock time is often reported as being experienced as a disruption to much-needed intimate encounters. This is echoed when the Strategy considers home care: ‘Current practices of specifying tasks rather than outcomes, not having the time or consistency of worker to develop the relationship … and the care workers being rushed and visiting for short (eg15 minute) periods are particularly problematic for people with dementia.’ Time here objectifies both sets of people involved in the relationship and devalues the complex dynamics that take place within.

The following vignette points to a situation where the ‘workforce’ is experienced as a distant separate body.

Dorothy is seated in her usual position in the corridor, on her wheelchair in between two red velvet armchairs. At the nurse’s station is Nancy, filing. ‘Oh good,’ says Nancy, turning to me, ‘You can look after her.’

Dorothy has pushed her torso upright in her wheelchair and is pushing her feet on the ground – they are out of her footrests – and she is trying to move the chair over to the nurses’ station. Her feet are behind the back of the footrests and she is pushing down on the floor hoping that the chair will move. “Lily, Lily, Lily” she shouts. I walk up to Dorothy and say “hello” and explain that Lily is just there. Dorothy bats in to the air with one hand, as if to push my face out of the way.

“See,” says Nancy. “She’s been agitated today. Too much going on. Not enough time.”

Another carer appears and moves in to the nurses’ station and she starts to fill in forms.

“Lily, Lily, Lily,” shouts Dorothy, still pushing herself forward.

Nancy comes out of the nurses’ station and walks towards Dorothy and asks her where she is going. “There you are, there you are, there you are,” says Dorothy.

Nancy gets behind Dorothy and manoeuvres the chair back in to the original position. “Esther is here,” says Nancy. Dorothy looks at me. I say “hello.” Dorothy starts moving her feet again. Nancy asks Dorothy to sit still for a moment. Nancy goes back in to the nurses’ station.

“Lily, Lily, Lily,” shouts Dorothy. She raises her hand in to the air and makes a sort of bird beak shape with her hand. “What am I doing, doing, doing?” she says. Nancy doesn’t answer nor does the other carer. Dorothy shakes her head and puts her face in her hands. She looks up again, “Don’t know what I’m doing, doing, doing.” Nancy is busy filling in forms, as is the other carer. No one notices what Dorothy is saying. Dorothy looks back down and puts her head in her hands.

A small woman, the hairdresser, comes out of the hairdresser salon. “Ridiculous,” she says. She walks into the nurses’ station, mumbling something to Nancy. “I’m at the end of my tether,” she says.

“Do you want me to get her?” says Nancy.

…

“Lily, Lily, Lily,” shouts Dorothy. She starts forcing her chair to move again, by pressing both feet down to the ground again, and pushing one after the other forward.

A male carer appears and goes behind the desk.

“Lily, Lily, Lily” shouts Dorothy.

“Everyone’s Lily,” says the care worker from the desk. A male nurse walks past. “There he is, there he is, there he is,” says Dorothy, scornfully.

The female nurse walks in to the nurses’s station and sits down.

“Lily, Lily, Lily” shouts Dorothy. No one is responding. Dorothy starts pushing herself up again from her chair and moving it towards the nurses’ station. “My hair done, my hair, my hair,” she shouts. No one is watching Dorothy and she begins to look unstable in the chair. The nurse notices and says, “Yes you will have it done.” She doesn’t make eye contact and walks in to the hairdresser’s room and then walks back. “You will have it done later, Dorothy.”

This observation was striking because of the sheer number of times Dorothy repeated herself. This repetition became a feature of Dorothy’s relating, as if she had to force herself into the impermeable ‘workforce’ to be noticed.

The autobiographical I in policy

Underlying the Strategy is an effort to capture a heterogeneity of experience. The I voices that pepper the Strategy are of our time. On one level this reflects an increased valuing of interiority, of individual subjectivities, of the confessional (from both literature and the psy-disciplines) as a way in to understanding lived experiences and improving lives. On another, the I is also a construct of the marketplace, the individual consumer expressing his wants and desires. The I of informal carers is positioned as expert, able to give valid ‘feedback’. The fact that the autobiographical voices of clinicians, professional carers, domestic helpers are absent in the Strategy suggests that the relational is constructed as an asymmetrical one. Implicitly then the consumer–patient is cast as the most needy in the partnership, which is in contrast to the narrative of empowerment. There is a paradox at play: the consumer–patient (emerging from a business model) is both vulnerable but also in the driving seat, the professional responsive and receptive to the various demands. This is interesting because this partially sanctions care staff to locate unthinkingly their own split off vulnerabilities in their charges, perhaps wielding power over them as a result.

Good care, which I witnessed, seemed to involve a kind of subtle mutual recognition at a deeply intimate level. There were times when both Dorothy and Daphne related to carers and carers related to them in ways that sustained both sets of personhood: a co-affecting, a dialogue.

As tears fell from Daphne’s eyes, and she shook, partially in anger, she cut a lonely figure

in the middle of the lounge room. Erica walked towards her and listened

for a few minutes. Daphne explained that she needed, “The backing from the parents.

Without the backing of the parents, the children would be lost”.

Erica got closer and told her she would like to help. “You are one of the

good ones”, Daphne. Erica wrapped her arms around her and

said, “I know you have given your life to the children. They are so important for

you”. Daphne stopped crying then, and asked if she could

help Erica in the kitchen