Practices for making residents’ wishes fit institutional constraints A case of manipulation in dementia care

This study is a ethnomethodological conversation analytic single-case study of a care situation in residential dementia care. The study details how a member of staff engages in manipulation by constructing her actions as responses to a resident’s wish which has in fact never been stated. The study discusses how manipulation may be care staff practices for making a residents’ wishes fit the institutional constraints they are subjected to and for ‘doing what is best for the resident’.


Introduction
According to Kitwood [1], person-centered care (PCC) in dementia care should focus on the uniqueness of the client and put an understanding of the person before the illness or disability.Kitwood's work has led to the formulation of guiding principles emphasizing e.g.knowing the client, respecting clients' preferences, focus on individual clients' needs, working together and providing a stimulating environment.However, these principles are often difficult to implement: As a consequence of their disease, persons with dementia are faced with cognitive as well as communicative challenges, including apathy, repetitiveness, semantic dementia, etc. [2], which means that personal expression and decision making eventually become severely compromised [3,4].This means that as the disease progresses, it becomes increasingly difficult for caregivers to find out what the wishes and needs of the person with dementia are.
On top of such challenges, members of staff at long-term care facilities for persons with dementia are faced with another paradox: They must meet institutional requirements, such as e.g.cleaning, registering their tasks in the measuring and reporting system -thus facing an obligation to spend their time most 'efficiently' in relation to this system.Such 'efficiency' sometimes goes against the priorities of PCC, since it requires staff to finish tasks that are measurable according to the reporting system, such as preparing meals etc., before they can do other, less measurable tasks, such as talking to the residents with dementia (henceforth: residents) to get to know them and find about their wishes and needs.
Faced with this paradox, members of staff resort to various practical solutions in their ongoing interaction with residents to make the residents' wishes and needs fit institutional constraints.This study describes one such practical solution by a member of staff to be able to follow PCC practices while also living up to institutional requirements.
In this article, we term these methods 'manipulation'1 , and we discuss to what extent the use of such methods can be reconciled with the principles of PCC.

Data and methods
The study reported is part of the project 'Dementia, Abilities and Possibilities' (DAP) conducted by the authors which aims to provide an empirical basis for describing remaining abilities and possibilities for participation in social interaction of persons with dementia.
The data is drawn from a corpus of approx.20 hours of video recordings of interactions between visiting researchers, staff and residents in the common rooms of two specialized dementia units in a Danish long-term care facility.The researchers visited the units on a weekly basis over the course of 9 months in 2015/2016.In addition to video recordings, the data collected includes ethnographic observations and field notes recording the observations as well as informal interviews with members of staff.
Since the residents were not capable of giving their informed consent to participate, their relatives did so on their behalf.All names and places in the data have been pseudonymized.
The data were transcribed in accordance with the Jeffersonian transcript system [5] with the addition of notations for indicating gaze and co-occurring resources as in Rasmussen [6].
The data are analysed by means of embodied and multimodal ethnomethodological conversation analysis (EMCA) [7,8,9].EMCA analyses aim to track in detail the interactional work that is done turn-by-turn by the participants, capturing members' perspectives and understanding of social life.Within this framework, actions are always seen as embedded in their environment, including other persons, and one analytic aim is to describe how members establish and maintain a shared understanding of their actions using whatever resources available to them.EMCA views any action as sequentially linked to previous and following actions.Therefore, analysis of an action includes analyzing the details of the immediately prior action, analyzing the details of the action, and analyzing how the action is treated in the next turn by coparticipants [10].

Analysis
The data, in brief, features a woman pseudonymized Gyda (G in the transcripts) apparently searching for someone, moving about the common room and squeezing between pieces of furniture to approach the kitchen of the unit, finding the visiting researcher, Rita (R in the transcripts) in the kitchen (an area which is off limits for residents due to potentially dangerous tools, hot stoves etc.) and subsequently being led to and placed in a comfy chair by Susan, a member of staff (S in the transcripts).
The analysis will show how Susan uses methods which we term manipulation to turn her own goal of placing Gyda in the chair into an activity taking place in response to a wish expressed by Gyda, and it will show how Gyda and Rita align their own goals and activities with Susan's.

Prologue: Gyda stating a wish
In the first part of the fragment, Gyda is moving about in the common room and the hallway.Eventually, she approaches the kitchen, finding her way between the comfy chair and the shelves to get there.She is almost blind, so this is quite an achievement.Excerpt 1 11 (10.0)com G squeezes in between a chair and a cupboard and enters the kitchen section where R is standing; faces R, leans forward towards R and moves out of view of the camera.The interaction in the rest of excerpt 1 takes place off camera.When she can't progress any further, Gyda remains standing, facing the kitchen.
The visiting researcher Rita notices her and greets her (line 12), and Gyda responds by asking Rita to accompany her: 'you have to come and see' (line 13).At the same time, Gyda is moving forward into the kitchen.Rita offers to accompany Gyda, acknowledging and aligning with her proposed wish while at the same time working to get Gyda out of the kitchen (lines 14-34).Rita and Gyda thus come to share a project: To go somewhere and talk.

Facing two tasks at once: Staff's response to Gyda's actions
While Rita and Gyda are talking, Susan enters the common room.She places a blanket on a shelf near the kitchen and arranges a comfy chair, checking the seat and turning it towards the kitchen before approaching Gyda and Rita who are standing in the kitchen:  Susan addresses Gyda, telling her to come with her (line 37).Susan thus orients to the need to get Gyda out of the kitchen.She does not, however, display any orientation to the possibility that Rita and Gyda may have a project of their own.Gyda follows her, and Susan informs Gyda that she will be with her shortly, but she has another task to do (lines 38-39).
In other words, Susan is facing a dilemma: She must take care of Gyda, and she must also wash the floor.Susan states that she must wash the floor first -the instrumental task takes precedence over the PCC task of fulfilling Gyda's wishes or figuring out what they might be.However, by promising that she will be back when the other task is finished, Susan orients to the fact that Gyda has some need or wish that she is supposed to tend to.In order to be able to carry out the instrumental care task, Susan must place Gyda somewhere out of harm's way.In sum: Gyda, Rita and Susan share the project of getting Gyda out of the kitchen -but their purposes differ.
Gyda does not respond to Susan's statement, so with 'right' Susan pursues a response [11] by asking for confirmation (line 41).Gyda then provides a minimal token of acknowledgement 'hm' (line 42) with which Susan aligns, closing the sequence [12].
Next, Gyda stops and turns her face towards Rita and asks 'are you coming too' (line 45), displaying an orientation to Gyda and Rita's common project of going somewhere to talk.
In response to Gyda's turn, Susan says 'what' (line 46), treating Gyda's turn as addressed to herself rather than to Rita as indicated by the direction of Gyda's head and eyes.Susan is standing behind Gyda, and her gaze is focused on Gyda's body, so that Gyda's face and gaze direction are difficult for her to see.Susan proceeds, however, without waiting for an answer, to direct Gyda to sit down in the comfy chair.She thus orients to Gyda's saying something but does not attempt to find out what she aimed to achieve.Her verbal and embodied actions thus do not treat Gyda's wishes or needs as relevant to the ongoing activity.Instead, Susan continues her own project: Placing Gyda in the comfy chair, so that Susan can go wash the floor.Her actions before approaching Gyda -placing the blanket and rearranging the chair -indicate that this was her original plan, since she arranged the environment to make possible this course of action.
Gyda, however, does not move (line 47).Rita moves closer to Gyda, asking Gyda if she should come along (line 48) to which Gyda agrees (line 49).In that way, they adapt their common project to Susan's project so that it remains a possible course of action despite the changed circumstances.

You like to sit here, you know: Turning staff's needs into a resident's wish
In extract 3, Gyda and Rita further adapt their project to Susan's project as they now perceive it: Rita offers to sit next to Gyda, and Gyda accepts (lines 54), which means that they still treat their common project as relevant and possible.Susan, on the other hand, continues her project: She tells Gyda that she will have the blanket if she sits in the chair (line 55).Her turn is constructed as a continuation of something Gyda previously asked for: it presumes that Gyda wants a blanket, and hence promising to give her one will make her want to sit down.Further, Susan's use of the definite form (taeppet/the blanket) indicates that the blanket has been mentioned previously in the interaction.But Gyda never asked for a blanket -Susan placed it on the shelf before she approached Gyda (line 11).Next, Susan says 'you like to sit here you know' (line 56) -a statement which announces what Gyda likes.Normally, people have primary epistemic rights to their own experience and the telling of it [13,14,15]; nevertheless, Susan in this case 'speaks for another' [16], expressing what Gyda likes and formatting her utterance as a declarative statement without hedgings or other markers of her secondary status in relation to the experience which she describes.Further, the Danish particle 'jo' (you know) orients to Gyda's liking to sit in the chair as previously established [17].In that way, placing Gyda becomes a fulfilment of Gyda's wish or need; and this becomes the rationale for placing her, rather than Susan's previously stated need to wash the floor.In that way, Susan engages in manipulation -basing her verbal and non-verbal actions on wishes that Gyda never expressed.On the contrary, Susan's action results from her own embedded assumption about Gyda's behavior.In dementia, wandering around with no (recognized) specific purpose may indicate problems with restlessness [18], in which case sitting down with a blanket may help.However, Susan has not attempted to establish a possible purpose for Gyda's 'wandering' prior to placing her.But there was a purpose, as Gyda and Rita know: A wish to go sit down somewhere with someone, Rita, and talk (line 13-34).
Note that Rita, in contrast to Susan, gazes at Gyda's face (line 55 and lines 58-60 below), treating Gyda's facial expression as relevant for the ongoing course of action, thus indicating that Gyda's expression of wishes and needs is relevant for the activity at hand.Susan, on the other hand, orients to Gyda's body, placing it in a good position for seating her in the chair, and she leaves Gyda and Rita briefly, walking around the comfy chair to get the blanket and approach Gyda from the other side which is more convenient for placing her in the chair (line 57).

Seating Gyda: Constructing a resident's wish by means of evaluations of progress
While Susan walks around the chairs, Rita asks Gyda if she wants to sit in the chair (line 58).Gyda agrees to sit on one condition: Rita has to stay with her (line 59), which Rita promises (line 60).This agreement, which ensures that their common project remains relevant and possible, creates a framework which makes it possible for Susan's project to succeed.Susan, however, is not a part of this agreement, and she does not orient to it as relevant.When Susan approaches Gyda and Rita, her focus is on Gyda's body and on making Gyda sit down (lines 61-64).Susan's directions 'look, now you have to we have to turn around a bit so that you can sit here' (lines 61 and 63) are again based on the premise that Gyda has expressed a wish to sit down and that the action happens in (or not) as relevant to the activity, orienting to the relevance of these bodily movements through prompts.Having seated Gyda, Susan prepares to tuck her in, stating that Gyda will get a blanket and then placing the blanket so that it covers Gyda's legs and stomach (lines 68-69).While arranging the blanket, Susan says 'there you are' (line 70), again using elderspeak, and subsequently assesses the placing of the blanket: 'isn't that nice' (line 71).The assessment has an inbuilt preference for agreement, indicated by the token 'ik' (n't), and invites a second assessment [22].When Susan produces the assessing term 'nice', she looks at Gyda's face (line 71).This is the only time Susan checks Gyda's reactions apart from monitoring her progress towards the chair: when looking for agreement in terms of a positive evaluation.In response, Gyda produces a typeconforming token of agreement 'jo' (yes) (line 73), to which Susan responds with 'ja:' (yes) (line 74).This confirms Gyda's agreement but also, by way of the prosody, evaluates Gyda's sitting down with the blanket.Susan's particular production of 'ja:' is recognizable as the prosody that Danish parents use with their children when they need to feel safe or comforted, for instance when they are being tucked in.By uttering the evaluation, the parent claims to be sharing the child's experience and hence to be entitled to evaluating it.Nevertheless, it remains a postulate: It is done by the one who carries out the comforting action and addressed to the recipient of the comforting action who is also dependent on that action.In other words, Susan's 'ja:' (line 74) claims to share Gyda's experience of the treatment she is subjected to.Gyda responds with an assessment, using the same lexical material that Susan used before (line 75).Susan responds with an agreement token at this point, treating Gyda's response as complete (line 76), but Gyda elaborates her evaluation by specifying that it is nice to sit on a pillow (line 77), thus not mentioning the blanket which Susan has focused on.After Gyda's elaboration, Susan responds with 'alright' (line 78) while briefly looking at Gyda's face and touching her knees, once again evaluating the result of her actions before walking away.
Rita's turn (line 81) implies that she has kept her promise, thus once again making relevant their common project to go somewhere and talk, and it indicates that she is available for talk, reestablishing the context that they started from before Susan arrived.

Discussion: Manipulation through member's methods in dementia care
The analysis above demonstrates one method by which the wishes of persons with dementia come into being through methods used by members of staff.It details how Susan has planned this particular course of events from the beginning -placing the blanket and the chair before approaching Gyda in the kitchen -and how she carries out the seating activity so as to turn her actions, dictated by her obligation to do another task, into a response to Gyda's wishes and needs -which are expressed by Gyda in the end.
Importantly, this course of events takes place in an institutional context in which members of staff have institutional roles and obligations that constrain their choice of methods.Susan is faced with the dilemma of choosing between the resident's needs and wishes and the instrumental -reportable and measurable -care task.As a consequence, Susan engages in interactional work to turn her choice of task into Gyda's wish, simultaneously transforming that choice into the most rational one, since it enables Susan to perform the instrumental task while at the same time fulfilling Gyda's needs and wishes.
Susan's course of action may further reflect her understanding of Gyda's actions as wandering or anxiety which are common amongst persons with dementia, in which case her attempt to comfort Gyda by settling her in the comfy chair with a blanket is a relevant response following guidelines for dementia care which often emphasize soothing and comforting the person with dementia to alleviate the distress displayed [e.g.23].In that sense, she can be said to engage in paternalistic nursing practices, which are carried out "intentionally on behalf of a person other than oneself, against that person's wishes or without consent, with the explicit purpose of doing good for, or avoiding harm to, that person" [24,p.288].In dementia care, such practices are difficult to avoid, since persons with dementia may not be able to exercise or express their needs or wishes, thus making it difficult for caregivers to find out whether they are in fact acting against the wishes of the client.In our case, Susan's paternalistic practices are realized through a method for managing Gyda's behavior which can be characterized as manipulation.Susan invokes a nonexistent precondition for her action, i.e. that Gyda wants to sit, and attributes that to the other participant so that Susan's action becomes a (preferred and) relevant response rather than an initiative for action.In that way, Susan is able to render Gyda's needs and wishes compatible with the institutional structures that frame Susan's as well as Gyda's possibilities for action.Manipulation as a method thus goes against the tenets of PCC because Gyda's wishes and needs are superseded by institutional interests and constraints.
Nevertheless, Susan's actions result in Gyda aligning with and even expressing the wish proposed by Susan.

Conclusion
This paper has described in detail how, in one situation, a member of staff, faced with a choice between two tasks, engages in the paternalistic practice of manipulation by attributing a never expressed wish to the resident and presenting her own actions as a response to the resident's wishes rather than as a consequence of her own dilemma.
Further, the paper claims that such manipulation is inevitable given the need for members of staff to reconcile sometimes incompatible institutional and individual needs, wishes and demands.The incompatibility results in part from institutional demands of 'efficiency' in care tasks which result in insufficient time for staff to talk to residents prior to and during care tasks to establish the current needs and wishes of the resident.
Nevertheless, we believe that PCC may be possible in dementia care, provided that members of staff and other caregivers are given sufficient time to try to establish the needs and wishes of the resident prior to and during care tasks.In the sequence analyzed above, the visiting researcher repeatedly orients to the resident's stated wish to have a talk, and she displays attention to the resident's facial expression as a means of evaluating whether the current actions are in accordance with the resident's current wishes.All of these actions can be understood as engaging in PCC by attempting to make sure that the course of action complies with the wishes of the resident.
In all fairness, it must be emphasized that the visiting researcher, in contrast to the member of staff, is not faced with any dilemma.She is a 'free agent' who can select her preferred course of action independently of institutional constraints.The visiting researcher and the member of staff can thus be said to represent contrasting methods.The member of staff, constrained by institutional conditions, including shortage of resources due to economic cut-backs and an understanding of the resident's actions as a symptom of the disease, focuses on the instrumental and institutional aspects of the care task, working locally to render her actions the resident's wish.The visiting researcher, in contrast, focuses on the resident's stated wish, working locally to ensure that the course of action does not exclude the possibility of fulfilling that wish.In combination, this results in a care setup which can be characterized as PCC.But neither Rita nor Susan would be able to accomplish such care on their own: Rita cannot carry out Susan's practical tasks, and Susan does not have the time to engage in interaction to find out about Gyda's possible needs and wishes.In fact, at the time of the sequence analysed above,

Excerpt 2 :
36 Ps (5.0) com S enters, arranges a chair and a blanket, walks up to G 37 S kom her Gyda come here Gyda com S takes G's hand and leads her towards the chair 38 S så kommer jeg li om lidt jeg ska li ha vasket et gulv I'll join you in a minute I need to wash a floor com S leads G towards the chair; S>floor in front of G 39 så kommer jeg he:n til ↑dig then I'll come to you com S leads G towards the chair; S>floor in front of

Extract 3 51
R ska jeg sidde ved siden af dig Gyda do you want me to sit next to you com R takes G's hand 52 G hm hm 53 R ↑ja (.) det vil jeg da gerne yes I would like to com R><G; R grasps G by the arm; S walks behind R 54 R det vil jeg ⌈gerne⌉ I would like to com R grasps G by the arm; R>floor 55 S ⌊så ska du⌋ li få taeppet på /hvis du sitter dig i stolen her Gyda now you'll have the blanket if you sit in the chair here Gyda com G stands still, R holds her arm, R>G;/S touching comfy chair 56 S du ka så godt li at sit her jo you like to sit here you know com S>blanket; S moves away from the chair; G>S 57 Ps (5.0) com R>S; S walks around two chairs and approaches G and R with a blanket

Extract 4 58
R vil du sidde i stolen Gyda do you want to sit in the chair Gyda com R><Gyda 59 G jamen så ska du blive der yes but then you have to stay com G>R; S places the blanket on sofa and approaches G 60 R jeg blir her I'll stay com R><G; R nods; S grasps G by the hand and the waist 61 S prøv og se nu ska du (.) vi ska li dreje lidt rundt look, now you have to we have to turn around a bit com S guides G to turn around; S>chair 62 Ps (0.5) 63 S så du ka komme til at sitte dig her so that you can sit here com S and R help G turn around 64 S s:å:dan exactly com S changes the position of her hand supporting G 65 Ps (3.0) com G sits down; S turns away 66 S ↑så okay com S takes blanket from sofa 67 R jeg saetter mig her ved siden af (.) Gyda I sit here next to you Gyda com R leans toward G; S prepares the blanket

Extract 5 68
S så får du li et taeppe ik now you'll have a blanket right com S moves toward G; R sits down in the sofa next to G 69 (2.2) com S places blanket around G's stomach and legs 70 S vaersgo there you are com S places G's arm above the blanket 71 S er det ↑ik /de:jlig isn'S placing her hands on G's knees 79 S m hm /hm com /S>R S turns away from G towards the sofa 80 G hm: com S walks away