Article
Framing spaces in places: Creating ‘‘respite spaces’’ in dementia care settings
Dementia 2014, Vol. 13(3) 396–411 ! The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1471301212474144 dem.sagepub.com
Tove Harnett Lund University, Sweden
Abstract Research on dementia care settings has primarily focused on routine aspects of life, including mealtimes, bathing procedures, etc. However, studies rarely explore how individuals with dementia interact in these settings during the intervals between routines. This study aimed to analyze how residents actively carved out spaces that provided temporary respite from institutional life, termed ‘‘framing respite spaces.’’ Ethnographic data was collected over five months in a dementia care setting in Sweden. Frame analysis was employed to investigate residents’ shared understanding of non-task-orientated situations. The results showed that individuals with dementia adjusted to institutional order, but also actively created respite spaces through conversation. Interestingly, individuals with dementia interpreted conversational cues and often acted logically according to a shared definition of the specific situation. These findings showed that looking beyond task-orientated interactions between staff and residents can provide a more detailed picture of everyday life in dementia care settings. Keywords dementia, frame analysis, ethnography, dementia care settings
Introduction Erwing Goffman’s (1961) notion of the total institution is commonly used by researchers to describe nursing homes and dementia care settings (e.g. Clark & Bowling, 1990; Harnett, 2010; Harper Ice, 2002). Although these settings have some characteristics similar to the total institution, there are fundamental differences that should not be overlooked. Focusing on the similarities between total institutions and nursing homes (cf. Mali, 2008; Winzelberg, 2003) tends to over-institutionalize nursing homes, and can portray an excessively rigid view of nursing home life. Interactions between residents are often neglected and under-theorized in studies on institutional life. However, most of the time, the residents are not interacting with staff or Corresponding author: Tove Harnett, Lund University, Sweden. Email: [email protected]
Downloaded from dem.sagepub.com at University of Birmingham on May 29, 2015
Harnett
397
involved in task-oriented routines (i.e. meals, going to bed, or taking a shower); instead, they are sitting, waiting in the corridor, chit-chatting on the sofa, or looking out of the window. Bearing this in mind, remarkably few studies have included these aspects of resident life. Thus, the present study explored situations that might provide a more detailed understanding of everyday life for individuals with dementia. The approach bears similarities to Kontos’ (2004, 2005) ethnographic research on selfhood and Alzheimer’s disease. However, while Kontos emphasizes aspects of embodiment, this study focuses primarily on verbal interactions (though residents’ practical actions are described for analytical and contextual purposes). Based on a broad-minded notion of frames as a theoretical tool, the aim of this study was to describe and analyze situations that could be interpreted as a method that residents employed to create ‘‘respite spaces,’’ which provided relief or escape from institutional life. The term ‘‘framing respite’’ was defined as the interactions and conversations used by residents to create respite spaces. Even if it was impossible to determine whether the individuals with dementia purposely interacted in this way, it was obvious that they shared ‘‘framed spaces’’ of situations outside of institutional tasks or routines.
Life in dementia care settings Most previous research on life in dementia care settings has portrayed the relationship between the care-providing staff and the care-receiving residents (cf. Berg, Rahm Hallberg, & Norberg, 1998; Eliasson, 1995; Graneheim, Norberg, & Jansson, 2001; Powers, 2006). That approach has provided indispensable knowledge about the routines and tasks of residents, including eating meals (Charras & Fre´montier, 2010; Lin, Watson, & Wu, 2010), getting dressed (Engelman, Mathews, & Altus, 2002), showering (Westerberg & Strandberg, 2007), and taking medications (Tjia et al., 2010). Previous research has also provided important information about how staff members perceived and experienced different aspects of their work, including their views on individualized care (Chappell, Reid & Gish, 2007), their job satisfaction (Vernooij-Dassen et al., 2009), stress (Pitfield, Shahriyarmolki, & Livingston, 2011), routines (Harnett, 2010), and their rituals when residents die (Magnu´sson, 2009; Strid, 2007). Few studies have investigated how residents frame situations that do not belong to typical institutional tasks or routines. Among those studies, McColgan (2005) performed an ethnographic study to examine resistance strategies employed by residents with dementia. That study specifically analyzed the use of resistance strategies in selecting a place to sit in the public areas of the institution. The findings highlighted the irony of staff who, through rearrangements of furniture, often denied residents the simple choice of selecting a place to sit, when sitting was one of their few independent activities. McGolgan’s study showed that people with dementia could be considered both strategically and socially competent.
Interactions and communications Previous studies that focused on interactions in dementia care settings were often based on staff perspectives. For instance, Zingmark, Norberg, and Sandman (1993) discussed communications between residents and caregivers that were related to the experience of homesickness among individuals with Alzheimer’s disease. A Japanese study analyzed communications between individuals with severe dementia and a toy robot (Tamura
Downloaded from dem.sagepub.com at University of Birmingham on May 29, 2015
398
Dementia 13(3)
et al., 2004). Another study by Chappel et al. (2007) operationalized ‘‘individualized care communication’’ with subscales for staff-to-resident communications and staff-to-staff communications, but they neglected communications between residents. In an ethnographic study, Ericsson, Hellstro¨m, and Kjellstro¨m (2011) described interactions between individuals with dementia and cognitively intact individuals (i.e. with the staff) during meals in a nursing home. The study provided important information, but neglected interactions that occurred between residents with dementia and interactions that occurred in the time intervals between institutional routines. However, it is important to note that, during recent years, findings have been published that bring to light the potential of conducting interviews with individuals with dementia (cf. Nwe Winn Thein, D’Souza, & Sheehan, 2011). In the past, individuals with dementia were typically excluded from qualitative research. There were some exceptions; some studies were based on interviews and provided important information about how individuals with dementia experienced everyday life from a first person perspective (cf. Hellstro¨m, Nolan, Nordenfelt, & Lundh, 2007; O¨rulv, 2010; Swane, 1995). Another aspect of current thinking in dementia research has explored bodies and embodiment, articulating a vision in which selfhood is embodied and reproduced through practical and corporeal actions (Kontos, 2004, 2005). Nevertheless, many studies that aimed to explore how residents experienced daily life in these settings often relied on interviews with staff members. One recent example was a mixed method study that investigated ‘‘friendships’’ among individuals with dementia living in long-term care. In that study, staff members were asked about key factors that they believed influenced friendships among residents (de Medeiros, Saunders, Doyle, Mosby, & Van Haitsma, 2012). Although staff members’ views are important for understanding life in dementia care settings, the present study aimed to show that researchers should not neglect the views of residents with dementia when collecting empirical data.
The setting: Sunny Hill This study was based on empirical material collected at a dementia care ward in a non-profit institution called Sunny Hill (Sunny Hill is a pseudonym and pseudonyms are also used for the residents mentioned in the article). Sunny Hill, built relatively recently, was located in a residential section of a medium-sized town (about 100,000 inhabitants) in Sweden. The ward that specialized in dementia was located on the third floor of the building, and it comprised 14 small individual apartments, a kitchen, a dining area, a communal living room, a corridor, a laundry room, a large ‘‘indoor balcony,’’ and a small office for the staff. Fourteen residents, with an age ranged from 80 to 98 years, lived in the ward. Like the majority of Swedish nursing homes, Sunny Hill was funded by the local government.1 All residents at Sunny Hill required assistance with physical activities and those on the ward studied had been diagnosed with dementia. In the analysis of field notes, it became clear that some individuals exhibited more severe dementia than others. In the field notes, a few of Sunny Hill’s residents portrayed themselves as quite intelligible, despite their assignment to a dementia care unit. However, it is important for the reader to bear in mind that the notes represent only a short glimpse of a resident’s life. None of the residents were sufficiently competent to provide informed consent, and I had to constantly remind them that I was a researcher, not a staff member.2
Downloaded from dem.sagepub.com at University of Birmingham on May 29, 2015
Harnett
399
The staff at Sunny Hill stated that they encouraged resident family members to bring personal objects, like photos and paintings, to make residents’ rooms more homelike. In Sweden, there is a trend in policy towards more homelike and less ‘‘institutional’’ care settings (National Board of Health and Welfare, 2010). Nevertheless, many aspects of life in Sunny Hill were far from homelike. Meals were served at fixed times, staff had organized a shower schedule with assigned days for each resident, and residents could not leave the ward without being accompanied by a staff member. Residents were expected to live their private lives in Sunny Hill, which had many characteristics of a public place (cf. Gubrium, 1997; Willcocks, Peace, & Kellaher, 1987). Consequently, the division between public and private places was ambiguous at Sunny Hill, and it was often difficult for residents to find privacy.
Theoretical background for framing Goffman (1974, p. 21) used the idea of frames to describe the outlines of interpretation that allowed individuals ‘‘to locate, perceive, identify, and label’’ events and, thus, interpret meaning that would guide future actions. Later expansions of the frame-concept included, for example, Gordon’s (2008) analysis of how several frames may be combined within the same situation. I used frame analysis in studying resident life in dementia care institutions because frames comprised the situational norms for interactions in a particular situation. However, a situational frame need not be static; it can be continually reconstructed and maintained by each individual’s actions. Frame-switching can be identified by looking for cues, or signals, used by members to indicate a switch in framing. A cue also indicates how a situation will be framed. Despite the fact that all residents at Sunny Hill had dementia, they appeared to be able to interpret each other’s cues and shape their actions according to a shared definition of a given situation.
Methods The role of the observer This study resulted from continuous analytical exploration of previously collected material (cf. A˚kerstro¨m, Jacobsson, & Wa¨sterfors, 2004). The data collection was part of a larger research project that analyzed the influence of residents on nursing home policies (Persson & Berg, 2009; Persson & Wa¨sterfors, 2009). The empirical data used for the present study were field notes from five months of observations at Sunny Hill (February to June 2008). In conducting fieldwork, I ascribed to the advice of Emerson, Fretz, and Shaw (1995), in striving to compose my notes to capture ‘‘scenes’’. To encounter a variety of situations, I was present at Sunny Hill from four to nine hours per day, at different times, and on different days of the week. However, I did not conduct any overnight field work. During this time, I observed nurses and aides, the setting, and the residents. I was accepted into the private rooms of residents, making small talk and listening to their stories and worries. I also joined residents in the ‘‘entertainment’’ activity sessions held on the first floor a couple of days per week. The activity sessions were arranged by two occupational therapists, and they included bingo, movies, qi-gong, and basic handicrafts. My role as an ethnographer was sometimes ambiguous. Previously, I had worked parttime for seven years as a nursing aide in a dementia care unit. This experience made it
Downloaded from dem.sagepub.com at University of Birmingham on May 29, 2015
400
Dementia 13(3)
challenging for me to preserve sufficient distance from the staff to meet the requirements of ethical, rigorous research. Initially, I engaged extensively in personal care for residents (such as assisting with their personal hygiene and eating). However, I subsequently reduced my level of engagement to assist with only impersonal tasks, such as washing dishes and food preparation. I gradually disengaged myself from the staff by not joining in when the staff had a break or a meeting; instead, I walked along the corridor or sat in a resident’s room. To minimize any negative effects of my presence, I engaged in informal interviews with residents. Also, I strived to spend considerable amounts of time with residents in noncaregiving situations, like sitting down to look at photo albums or going for walks. When I began to analyze my field notes, I first considered that my involvement might be a drawback in the study. However, my involvement, and the strategy to spend time with residents rather than staff, could also be seen as a methodological approach for exploring spaces between routine tasks at Sunny Hill. During the analysis the observational data was organized into ‘‘analytic brackets’’ (Gubrium and Holstein, 1997). This analytic approach will be described more in detail below (in the section ‘‘Ways of framing respite’’).
Theoretical approach To explore ways of framing ‘‘respite spaces,’’ this study used an interactionist approach, focusing primarily on verbal interactions. Inspired by Mead (1964) and Kontos (2004), I viewed social interaction as essential for the sense of self. When two people interact, each person observes the other person’s attitude toward them, and this provides an outside view of the self. This way of seeing yourself through the eyes of others requires a certain cognitive ability and little is known about how individuals with dementia interpret social interactions with others. Previous studies of selfhood in Alzheimer’s disease have focused on how individuals use their own bodies, and demonstrated that selfhood persists even with severe dementia, as an embodied dimension of human existence (Kontos, 2004, 2005). Focusing on verbal interactions, this study illustrated that, although a resident’s interactions may seem absurd from the outsider’s point of view, their actions may be logical in the context of a shared understanding (i.e. framing) of the particular situation. I explored interactions that took place in the intervals between task-oriented routines. Specific attention was focused on the residents’ shared understanding of these interactions. Thus, the focus was on ordinary, non-task-oriented interactions taking place when residents sat down in the corridor, when they waited in front of the TV, spent time in their individual apartments or chit-chatted with each other in the sofa. I hypothesized that understanding how a particular situation was framed would provide an understanding of how the framed situation was shared and of how framing shaped the individual’s actions. Compared to interactions described in previous research on dementia care settings, the interactions analyzed in this study were distinct. Interactions interpreted as framing respite spaces were characterized as follows: (a) They were initiated by the residents (not by the staff); (b) They did not involve routines or task-oriented matters inside the institution; (c) They were triggered, or cued, by physical objects within the institution, but referred to life outside the institutional setting; (d) They could take place almost anywhere in time and space, unrestricted by institutional order.
Downloaded from dem.sagepub.com at University of Birmingham on May 29, 2015
Harnett
401
Results and discussion The discovery of resident respite spaces Although residents could not physically leave, or escape, from Sunny Hill without staff member permissions, I became aware of other ways that they interactively ‘‘carved out’’ temporary respite from institutional life. These observations of residents ‘‘framing respite spaces’’ later formed the empirical basis for the present analysis. When residents talked with the staff, it was often about task-orientated matters. It was as if the residents knew that, when a member of staff entered the scene, something was going to happen. It could be a sign that it was time to get up, time for lunch, time for coffee or medication, or time for bingo. Interactions between residents and staff were often framed by institutional matters; these frames were termed ‘‘institutional talk.’’ For instance, staff talked about the food as they served lunch, they gave instructions as they helped with showering, or they talked about the weather when they woke residents in the morning. Sometimes, however, residents might begin to talk to staff about matters that had nothing to do with routines or with Sunny Hill; at these times, staff usually drew residents back to the present by reminding them about an ongoing routine. For instance, a woman resident at Sunny Hill often talked about her ‘‘lovely little boys’’ (i.e. her sons) while the staff served lunch. At these times, the staff often reminded her about the food being served; for instance, that she should eat her peas or that she should not forget her dessert. Through these kinds of reminders, the staff could ‘‘reframe’’ (cf. Gordon, 2008) the situation, by pointing out that this is a meal situation where we eat, not a situation where we talk about our children. Sometimes I was personally involved in interactions with the residents, and at other times I was passively observing, without interacting. When I spent time with residents, they often shared short personal stories and opinions about the life ‘‘out there’’ (i.e. outside of the institution); I asked questions and sometimes told brief stories from my own life. As I observed residents waiting, between meals and before going to bed at night, I discovered that they were framing respite spaces. This observation led to the hypothesis that the time intervals between routine tasks were not merely empty spaces from the resident’s point of view; rather, these intervals were filled with meaningful interactions that framed pockets of respite from institutional life.
Framing everyday life at Sunny Hill A switch of frames changes people’s interpretations of a given situation. For example, in the morning, before starting work at 7 a.m., the staff of Sunny Hill often sat on the sofa in the staff room, engaging in small talk about what to do on the weekend or about TVprograms they had watched the previous night. After a while, someone often commented about the time ‘‘Oh, it is already 10 past seven.’’ This type of comment served as a cue, or signal, for frame switching, from ‘‘small talk’’ to ‘‘job talk,’’ and the night nurse would begin to report information from the previous night shift. This frame-switching changed both the topic and the staff’s behavior. During the ‘‘small talk’’ frame, nurses and aides talked indiscriminately and interrupted each other. However, during the ‘‘job talk’’ frame, the aides became the audience, listening to the nurses. First, they listened to the night shift report; then, they listened to the plan for the day shift. Thus, the staff roles changed according to how a situation was framed. The frames did not make people act like
Downloaded from dem.sagepub.com at University of Birmingham on May 29, 2015
402
Dementia 13(3)
institutional ‘‘dopes’’ (Garfinkel, 1967, pp. 68–69); rather, frames provided members with a repertoire of actions appropriate for different situations. Sometimes, there were competing frames for how to define a particular situation at Sunny Hill. For example, interactions between residents might be framed in one way by the residents and in a completely different way by the staff. In one case, two residents spent a large part of an afternoon looking for a girl that (according to them) had gotten lost somewhere in the living room. The residents framed this situation as ‘‘urgent business,’’ but the staff, as outsiders, framed it as ‘‘dementia talk.’’ The field notes from Sunny Hill also illustrated how frames could be layered (cf. Gordon, 2008); thus, ‘‘respite talk’’ and ‘‘institutional talk’’ were sometimes layered in the same situation. The staff described some activities at Sunny Hill as entertainment. These included bingo, TV-watching, and cake baking. Although these activities were not described by the staff as routine tasks (but rather as a break from routines), they were indeed part of the weekly routines, and thus, they were institutionally framed. During the five months of ethnographic field work, none of the residents were observed organizing or initiating those types of activities. Furthermore, these activities were organized at times and places that were convenient for the staff. If residents wanted to play bingo, they had to do so on Wednesday mornings in the same room every week. If they wanted to go for a walk, they had to wait until a staff member had time to accompany them. Cake baking took place on weekends, and the staff decided what to bake. If a resident wanted some snacks and a beer on a Tuesday afternoon, they had to wait until Friday night, and then, they must sit with the others in front of the TV in the communal living room. Therefore, organized activities at Sunny Hill did not constitute a break with the institutional routine. Contrary to the staff’s intentions, the breaks continued to form an important part of the order and monotony.
Ways of framing respite The observational data was organized into ‘‘analytic brackets,’’ as described by Gubrium and Holstein (1997). Analytic bracketing required breaking down the data into descriptions of either ‘‘what’’ or ‘‘how.’’ For instance, descriptions of what the residents talked about in the intervals between routine tasks were analyzed separately from descriptions of how respite spaces were accomplished, and, in particular, how individuals with dementia interpreted cues, or signals, for framing respite spaces. Typically, a resident’s cue for framing respite was directed to another resident within the institution, but the topic of the talk was focused outside the institution. Analytically, the respite spaces framed by residents fell into two practices, which I termed ‘‘recollection talk’’ and ‘‘worrying talk,’’ defined as follows: Recollection talk. Respite spaces were framed through describing recollections of past episodes that took place before moving to Sunny Hill. This recollection also served as a cue for another resident to get involved in the interaction. Worrying talk. Respite spaces were also framed through an expression of worry to another resident. In these situations, the cue for the ‘‘respite frame’’ was created by a resident’s concern about something ‘‘out there;’’ i.e. not an institutional matter. The frame defined an issue (e.g. when could they go grocery shopping), and the individuals within the frame
Downloaded from dem.sagepub.com at University of Birmingham on May 29, 2015
Harnett
403
were defined as problem solvers with a common interest (e.g. those set on finding out what time they could go grocery shopping). Although recollection-talk and worrying-talk sometimes overlapped or occurred in the same interaction, they were nonetheless distinguished for analytic purposes.
Recollection talk Talking about the past may seem like a natural part of life as individuals age; therefore, it was surprising that residents at Sunny Hill rather seldom talked about their past. When they did talk about the past, it was often a brief comment; for instance, how they had had beautiful flowers in their garden at home or that they remembered something about a teacher they had had in school. Although residents rarely shared long stories about the past with the staff, they sometimes shared long, but disjointed, stories about the past with each other. Sometimes they also told me stories, but only during intervals between routine tasks. When residents included me in their conversations, it was not clear whether they considered me part of the staff, a researcher, or someone else. Occasionally, a resident’s referral to an episode in the past served as cue for framing a respite space. The conversation started with an episode or person in the past and interactively moved somewhere else; often, it became a long, winding story without any references to the institution. One example of frame switching, from institutional matters to a ‘‘respite space’’ is illustrated in the following excerpt from field notes: The members of the staff are in the staff room. Anna, Selma, and Iris sit on the sofa in the day room. I sit in an armchair next to the sofa. Iris asks me what day it is. I tell her it is Monday. Iris turns to Selma, points to her eye, and says she is going to the eye doctor in a fortnight. Then, Selma begins to talk about men. She tells the others that she was young when she first started going out with her husband. They had a lot of fun, Selma says, and they traveled a lot. Selma continues with the comment that her husband is dead now, and she does not want anyone else. Iris turns to Anna and Selma and asks what they should do. Anna asks Iris if she wants to join her in shopping. ‘‘I have to buy a dress’’ Anna says. Anna explains that she wears jumpers most of the time, and therefore needs help buying a dress. Anna adds: ‘‘And men know nothing about clothes!’’
In this example, Iris repeatedly informed the people in the room about a forthcoming routine task, apparently important to her, namely a doctor’s appointment. Then Selma, rather suddenly, started to talk about men; here, she provided a cue for frame switching, and she introduced a new way of defining the situation. Anna and Iris seemed to interpret Selma’s cue, accepted the new definition, and framed their actions accordingly. The members switched frames from ‘‘institutional talk’’ about doctor’s appointments to ‘‘recollection talk’’ about men (and later to talk about shopping). They did not refer to the institution; thus, the talk could be interpreted as a way of framing a ‘‘respite space’’ by interactively moving away from Sunny Hill. In this interaction, Selma did not present herself as a resident in a dementia care institution, but rather, as a person who has traveled and had a lot of fun with her husband. From Selma’s talk about men, the interaction takes a winding detour via Anna’s mention of shopping. Finally, Anna returns to the men-theme by declaring that ‘‘men know nothing about clothes.’’ Here, Anna involved Iris in her ideas about shopping, and then she shared her opinion that men lack shopping knowledge. The interaction described above shows how conversation topics could shift rather quickly and the frame of recollection talk could be combined with talk about the present (cf. Gordon, 2008).
Downloaded from dem.sagepub.com at University of Birmingham on May 29, 2015
404
Dementia 13(3)
At times, recollection talk could constitute the framing of an entire coherent respite episode. During these episodes, individuals would talk about their past for relatively long periods of time without interruptions from staff that might switch the frame from ‘‘past’’ to ‘‘present’’ or from ‘‘there’’ to ‘‘here.’’ Given that all residents had dementia, they had varying capabilities for telling a coherent story. One example of a long recollection story occurred when the residents had just finished a rather confused game of bingo on the first floor. As the staff members helped the residents to return to the third floor, some residents, including Bertil and Sven, had to wait in the therapy room for the staff to come back for them. The following account illustrates an example of a longer recollection, using an excerpt from field notes of the conversation of the individuals waiting in the therapy room: Two men, Bertil and Sven, sit around the table. Bertil turns to me and asks where I come from. I tell them that I come from Lund, in Ska˚ne (a region in southern Sweden). Both Bertil and Sven tell me that they had spent time in Ska˚ne, when they were young. Bertil says he was forced to pick sugar beets in the fields outside Lund when he was completing his military service. Bertil talks with enthusiasm about what it was like to pick sugar beets when the ground was frozen. They used a pitchfork to get the beets up in one piece, but sometimes, the beets split. For an area 20 by 20 meters, they got paid 20 kronor. But, Bertil points out, other people got paid 22 kronor for the same job. Sven nods, but he does not say anything. Bertil tells us that he slept on a sofa in a barn, and that they had gotten up to a lot of mischief during the nights. Sven tries to say something, and mumbles that he has also picked sugar beets, but he has difficulty getting the words right.
This excerpt illustrated how Bertil’s question about my origin (given my Southern accent) served as a cue for framing the situation. Through Sven’s and Bertil’s recollections of their youth in the south of Sweden, they created a respite space, where Bertil was the main character, and Sven was a supporting actor who confirmed the story and also acted as part of the audience. Through his story, Bertil presented himself as a person who has coped with hard times. Bertil’s talk about his past could be interpreted as a way to characterize himself as something more than a nursing home resident. The shared respite space provided Sven and Bertil with a means for interactively moving to a different time in a different place, far away from Sunny Hill and its institutional order. In another instance, I had asked Margit if she wanted to go out for a walk. Instead, we remained in her room for nearly an hour, as she told me about her past and her family: I knock on the door to Margit’s room. ‘‘Come in,’’ she says. I enter the room and ask Margit if she wants to go out for a walk. But Margit does not answer. Instead, she walks to a shelf and looks at some photos. I stand next to her. She shows me the photos and talks about her daughter. Margit tells a story about when the daughter got married and how her sister-in-law fixed Margit’s daughters hair for the wedding. Margit then tells me that she used to work at a clinic. She started working in the clinic when she was only 18 years old, and she even received a gold medal in the end. We continue to look at more photos. Margit shows me photos of her five siblings and says that all are dead. She shows me photos of her husband and tells me that he is dead too. Then, she shows photos of her grandchildren and great grandchildren. Margit talks about her home and that it is no longer there. She misses her home, but explains that she has been very ill and that she was no longer able to live at home by herself. Her daughter has helped her a lot, but she has her own family now. ‘‘Here is my kitchen’’ Margit says, and shows me the sink and the little cooking area. She explains that she can make coffee there. I try
Downloaded from dem.sagepub.com at University of Birmingham on May 29, 2015
Harnett
405
to explain who I am and why I am visiting, but I am not sure she understands. I tell Margit that I also have five siblings. Margit says it is unusual to see families with many children nowadays. Margit points at two paintings on the wall and says that they were painted by a doctor from Poland. She talks about the doctor and says he was a wonderful doctor and a wonderful person, but he had problems with his nerves, which you can see in some of his paintings (according to Margit). The paintings are all rather abstract, painted in black and brown.
Here, Margit had presented herself in two entirely different ways. First, through her recollection talk, she presented herself as a family member, a mother, grandmother, greatgrandmother, sister-in-law, and sister; in addition, she was a loyal employee, emphasized by her information about the gold medal she received from her previous employer. Then, Margit shifted the frame, and presented herself as a nursing home resident, as she indicated her room and cooking facilities. Thus, Margit and I had moved in and out of frames, from recollection talk to the present. The two different frames appeared to be layered (cf. Gordon, 2008) in the same interaction. When I mentioned that I had five siblings, just like her, it seemed to serve as a bridge between the past and present. In Margit’s statement that it was uncommon to see large families nowadays, there was an implicit comparison between the past and present, with her lifetime belonging to the past and mine to the present.
Worrying talk Expressions of worry were common at Sunny Hill. The residents worried about all kinds of matters, including their family members, cooking, being late for work or school, etc. Sometimes, their worries clearly referred to the institution; for instance, a resident might worry about another resident’s health or that the staff might be working too hard. At other times, they expressed worry about things outside of the institution. In these situations, it became evident that a situation was sometimes interpreted differently by individuals in different positions. When two residents with dementia worried about something, they often interpreted each other’s conversational cues and acted logically according to a shared definition of the situation. Usually, they did not question the other person’s worry, but rather, got engaged in it. The mutual definition often had nothing to do with institutional order and could be interpreted as a way of framing ‘‘respite space’’ from institutional life. In contrast, when the staff observed residents worrying about something outside of Sunny Hill, they often defined this as ‘‘dementia-talk;’’ i.e. that the worry was not to be taken seriously, but rather, as a sign of dementia. Hence, the staff would not act according to the resident’s frame of the situation; rather, they would try to introduce a competing frame. In a typical example, some of the residents were talking about gardening, and they worried about when they might have time to do the weeding in their gardens. The residents framed this as worrying-talk. Then, the staff introduced a competing frame by referring to the institution; for instance, they might interrupt and ask the residents if they wanted to go to the kitchen to see if the coffee was ready. It was not surprising that the staff framed these situations differently from the residents with dementia. However, it was striking that people with rather severe dementia could interpret cues and adjusts their behavior according to a shared definition of a particular situation. Many of the topics that residents in Sunny Hill worried about appeared to be absurd or confused (e.g. when to go to school, how to find their mother, when to do their
Downloaded from dem.sagepub.com at University of Birmingham on May 29, 2015
406
Dementia 13(3)
gardening, etc.). However, once the residents had created a worrying frame, the worrying was quite real. In addition, the interactions within the frames were often logical. For instance, it may seem absurd that two 90-year-old women would worry about when to go to school. However, they interacted in a logical way, interpreted conversational cues, and adjusted their behavior according to a shared definition of what was going on. An example of this type of interaction in worrying talk is illustrated in the following excerpt: Iris and Esther sit on the sofa by the TV. In front of the sofa, there is a table with a pile of old magazines. Esther looks in one of the magazines at a page with Christmas recipes and shows a photo to Iris. Esther and Iris begin to talk about meat. Esther explains that she is worried that there are forgotten pieces of meat lying around somewhere. Esther says that the meat may be on the toilet. Iris appears very worried and asks what the meat looks like. Esther says it is probably wrapped up in paper. Iris opens her red handbag and looks inside it. She takes up a little handkerchief and says that at least she does not have the meat in her handbag. Iris and Esther then continue to talk about the preparation of meat. Esther says that you cannot just serve raw meat; you need to cook it first. Iris asks the others in the room if they have had any food today. Vera, a woman sitting in a wheel chair next to the sofa, says she has eaten. Iris says that she has not had any food all day.
Here, Esther provided a first cue for framing the situation by showing Iris the photos of the recipes; i.e. this is a situation about food. The worry about the forgotten meat opens up many alternative ways of interpreting the situation. For instance, Iris could ignore Esther or comfort her by saying that she does not need to worry about any meat. Instead, Iris shapes her behavior according to the worrying frame suggested by Esther. Iris and Esther play roles of two worrying friends trying to solve a problem. By initiating the meat ‘‘search,’’ Esther becomes the ‘‘expert,’’ providing information to Iris by explaining what the meat might look like (wrapped in paper). Esther also presents her cooking knowledge by explaining that meat needs to be cooked and not served raw. It is clear that Iris and Esther have acted according to a shared frame of the situation, even though the framing may seem absurd to an outsider. The excerpt also illustrates that, despite severe dementia, Iris and Esther had certain social competencies. For instance, they could actively interpret each other’s cues for situational framing, and they adjusted their behavior accordingly. This interaction also illustrated a way of framing a respite space away from the institution. Through mutual framing of the situation, the residents could talk about matters that had nothing to do with Sunny Hill and its routines; thus, they interactively created a respite space from institutional order. A similar interaction took place on another day between two other women. This situation was unusual, because both women touched and talked to a cushion as if it were a cat. Greta and Selma sit on the sofa. Greta picks up one of the cushions and begins to pet it, as if it were a cat. She snuggles up with the cushion; she kisses it and holds it in front of her face, as if she were talking to it. Greta then turns to Selma and asks: ‘‘Is it yours?’’ ‘‘Is there no name on it?’’ Selma wonders. Greta begins to inspect the cushion. After a little while, she places the cushion on the table in front of the sofa. Greta and Selma seem to be confused; for a long time, they discuss to whom it (the cushion) may belong. Finally, Greta rises from the sofa, takes her walker, and leaves the room.
Downloaded from dem.sagepub.com at University of Birmingham on May 29, 2015
Harnett
407
Here, Greta’s question ‘‘Is it yours?’’ served as an interactional ‘‘hook’’ (cf. Goffman, 1963) for Selma to get involved in the conversation. Although we cannot know what Selma thought about the cushion, she appeared to interact according to Greta’s definition of the situation. She did not question Greta when she kissed the cushion, and Selma acted worried when they could not determine who owned the cushion. Thus, they interacted, not as members of an institution, but as two worried friends trying to solve an urgent problem. Again, through their mutual focus on the cushion and the intense worrying talk, they framed a situation that could be interpreted as a respite space from the institution and its order. As in the previous excerpt, they interacted logically within the frame, although the topic of conversation seemed absurd.
Shifting and combining frames The interactions at Sunny Hill included situations in which several frames were layered or combined in a single interaction. Staff members often combined or shifted frames to accomplish specific tasks. For example, one evening, at 8 p.m., only one resident, Greta, was watching TV; all the other residents were in bed. Residents were usually in bed when the night staff started their shift at 9 p.m. In this case, the staff member asked Greta if she wanted to go to bed, but Greta said she did not want to go. This caused a mismatch in expectations; therefore, the staff member decided to accomplish the task by combining task-oriented framing with playful framing. The staff member took Greta’s hands and started dancing. They danced all the way to Greta’s bedroom. Taking Greta’s hands and dancing established a play frame by sending the metamessage (cf. Gordon, 2008) ‘‘this is play.’’ Simultaneously, however, the staff member’s physical actions (guiding Greta to her room and to bed) established a task-oriented frame by sending the message ‘‘it is time to go to bed.’’ Thus, combining frames was used to accomplish a very specific task. Sometimes, frame disputes occurred between staff and residents. However, these disputes rarely developed between residents. When residents framed ‘‘respite spaces,’’ it was a collective achievement; residents did not question each other, but instead got involved and followed a logical interaction order.
Conclusions Sometimes researchers describe how a person with dementia is in his or her own little world (Beck, 1996). The findings from this study show that people with dementia may not only be in their own individual worlds, but they may indeed share experiences with each other and have shared understandings of how a situation should be framed. This study revealed a number of interesting findings. First, frame analysis represented a novel method for studying individuals in dementia care settings and for understanding interactions in these settings. The primary finding was that individuals with dementia did not simply passively adjust to institutional order; they also actively carved out temporary respite spaces from institutional life. The residents at Sunny Hill commonly used two methods for framing respite spaces: 1) by recollection talk and 2) by worrying talk. Due to the difficulty in finding physical privacy in dementia care settings, it is crucial to understand how residents can achieve interactional respite from the institutional order in these settings.
Downloaded from dem.sagepub.com at University of Birmingham on May 29, 2015
408
Dementia 13(3)
At Sunny Hill, framing task-oriented situations followed certain common ‘‘rules’’: The staff member was the ‘‘expert,’’ who gave instructions or guidance (‘‘take your pill,’’ ‘‘sit down,’’ ‘‘eat some more’’), and the resident followed instructions (or at least was supposed to do so). These implicit rules made framing task-oriented situations rather predictable. In contrast, framing non-task oriented situations was relatively unpredictable, but not necessarily illogical. This study showed that individuals with dementia were able to interpret cues related to framing, and then act logically according to a shared definition of the frame. This suggested that individuals with rather severe dementia retained certain social competencies. The findings also confirmed other studies that reported staff members’ descriptions of resident talk as ‘‘dementia-talk.’’ This suggested that, once the label Alzheimer’s was applied, even normal behavior may be interpreted in terms of disease stages (Gubrium & Lynott, 1987; Lyman, 1988, 1989). To understand resident life in dementia care settings, it is important to analyze resident framing of situations that are not related to task-oriented routines. Because most of the time spent in these settings is not related to task-oriented routines, these situations represent aspects of life that may be of great concern to the residents. Framing can be interpreted as a multilayered, complex activity in the day-to-day life in dementia care settings. By studying these situations, we may gain a more detailed picture of everyday life in dementia care settings. Combining frames of past and present experiences and layering ‘‘institutional’’ frames with ‘‘respite spaces’’ may serve to bridge dimensions that are constantly at odds in resident interactions. Individuals that live in dementia care settings are members of an institution, but they have also lived most of their lives independent of this setting. Based on the observations of this study, I suggest that future researchers should continue critical analyses of framing of everyday situations in all forms of institutional care. Researchers should be careful not to reduce residents’ lives to only the situations guided by task-orientated routines. Situations that do not belong to institutional order represent a large part of life in all kinds of institutions. Further research is required to understand these situations more fully. This study demonstrated that, by looking beyond task-orientated situations between staff and residents, we gained a more detailed picture of everyday life for people living in dementia care settings. Acknowledgements I am deeply grateful for the valuable comments provided by Dr. David Wa¨sterfors and Dr. Leili Laanemets on the drafts of the article. I also thank two anonymous reviewers for providing important comments that helped to improve the manuscript.
Conflict of interest None declared.
Funding This research was carried out within the context of the School of Social Work at Lund University and of the interdisciplinary Centre for Ageing and Supportive Environment (CASE) at Lund University, funded by the Swedish Council for Working Life and Social Research.
Downloaded from dem.sagepub.com at University of Birmingham on May 29, 2015
Harnett
409
Notes 1. In Sweden, local governments are responsible for providing organizational and financial support for all types of care for people over 65 years old. The municipal authorities also have considerable freedom in the interpretation of this responsibility, and they levy local taxes and fees for the care of aged individuals. 2. The study was approved by the Linko¨ping ethical board (Reg. no. 102-08).
References A˚kerstro¨m, M., Jacobsson, K., & Wa¨sterfors, D. (2004). Reanalysis of previously collected material. In C. Seale, G. Gobo, J. Gubrium, & D. Silverman (Eds.), Qualitative research practice (pp. 902–942). London, UK: SAGE. Beck, C. T. (1996). Nursing students’ experiences caring for cognitively impaired elderly people. Journal of Advanced Nursing, 23(5), 992–998. Berg, A., Rahm Hallberg, I., & Norberg, A. (1998). Nurses reflections about dementia care, the patients, the care and themselves in their daily caregiving. International Journal of Nursing Studies, 35(5), 271–282. Chappell, N. L., Reid, R. C., & Gish, J. A. (2007). Staff-based measures of individualized care for persons with dementia in long-term care facilities. Dementia, 6(4), 527–547. Charras, K., & Fre´montier, M. (2010). Sharing meals with institutionalized people with dementia: A natural experiment. Journal of Gerontological Social Work, 53(5), 436–448. Clark, P., & Bowling, A. (1990). Quality of everyday life in long stay institutions for the elderly. An observational study of long stay hospital and nursing home care. Social Science & Medicine, 30(11), 1201–1210. de Medeiros, K., Saunders, P. A., Doyle, P. J., Mosby, A., & van Haitsma, K. (2012). Friendships among people with dementia in long-term care. Dementia, 11(3), 363–381. Eliasson, R. (1995). Forskningsetik och perspektivval [Research ethics and choice of perspective] (2nd ed.). Lund, Sweden: Studentlitteratur. Emerson, R. M., Fretz, R. I., & Shaw, L. L. (1995). Writing ethnographic fieldnotes. Chicago, IL: University of Chicago Press. Engelman, K. K., Mathews, R. M., & Altus, D. E. (2002). Restoring dressing independence in persons with Alzheimer’s disease: A pilot study. American Journal of Alzheimer’s Disease and Other Dementias, 17(1), 37–43. Ericsson, I., Hellstro¨m, I., & Kjellstro¨m, S. (2011). Sliding interactions: An ethnography about how persons with dementia interact in housing with care for the elderly. Dementia, 10(4), 523–538. Garfinkel, H. (1967). Studies in ethnomethodology. Englewood Cliffs: Prentice-Hall. Geertz, C. (1983). Local knowledge: Further essays in interpretive anthropology. New York: Basic Books. Goffman, E. (1961). Asylums. New York, NY: Penguin Books. Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. New York, NY: Prentice Hall. Goffman, E. (1974). Frame analysis: An essay on the organization of experience. Cambridge, MA: Harvard University Press. Gordon, C. (2008). A(p)parent play: Blending frames and reframing in family talk. Language in Society, 37(03), 319–349. Graneheim, U. H., Norberg, A., & Jansson, L. (2001). Interaction relating to privacy, identity, autonomy and security. An observational study focusing on a woman with dementia and ‘behavioural disturbances’, and on her care providers. Journal of Advanced Nursing, 36(2), 256–265. Gubrium, J. (1997). Living and dying in Murray Manor. New York, NY: St. Martin’s Press. Gubrium, J., & Holstein, J. (1997). The new language of qualitative method. New York, NY: Oxford University Press.
Downloaded from dem.sagepub.com at University of Birmingham on May 29, 2015
410
Dementia 13(3)
Gubrium, J. F., & Lynott, R. J. (1987). Measurement and the interpretation of burden in the Alzheimer’s disease experience. Journal of Aging Studies, 1, 265–285. Harnett, T. (2010). Seeking exemptions from nursing home routines: Residents’ everyday influence attempts and institutional order. Journal of Aging Studies, 24(4), 292–301. Harper Ice, G. (2002). Daily life in a nursing home: Has it changed in 25 years? Journal of Aging Studies, 16(4), 345–359. Hellstro¨m, I., Nolan, M., Nordenfelt, L., & Lundh, U. (2007). Ethical and methodological issues in interviewing persons with dementia. Nursing Ethics, 14(5), 608–619. Kontos, P. (2004). Ethnographic reflections on selfhood, embodiment and Alzheimer’s disease. Ageing and Society, 24(6), 829–849. Kontos, P. (2005). Embodied selfhood in Alzheimer’s disease: Rethinking person-centred care. Dementia, 4(4), 553–570. Lin, L. -C., Watson, R., & Wu, S. -C. (2010). What is associated with low food intake in older people with dementia? Journal of Clinical Nursing, 19(1–2), 53–59. Lyman, K. A. (1988). Infantilization of elders: Day care for Alzheimer’s disease victims. In D. Wertz (Ed.), Research in the sociology of health care (pp. 71–103). Greenwich, CT: JAI Press. Lyman, K. A. (1989). Day care for persons with dementia: The impact of the physical environment on staff stress and quality of care. The Gerontologist, 29, 557–560. Magnu´sson, F. (2009). Att tala om a¨ldres do¨d: en kulturanalys [Talking about older people’s death. A cultural analysis]. Malmo¨, Sweden: Liber. Mali, J. (2008). Comparison of the characteristics of homes for older people in Slovenia with Goffman’s concept of the total institution. European Journal of Social Work, 11(4), 431–443. McColgan, G. (2005). A place to sit: Resistance strategies used to create privacy and home by people with dementia. Journal of Contemporary Ethnography, 34(4), 410–433. Mead, G. H. (1964). On social psychology: Selected papers. Chicago, IL: University of Chicago Press. National Board of Health and Welfare [Socialstyrelsen]. (2010). Nationella riktlinjer fo¨r va˚rd och omsorg vid demenssjukdom 2010 – sto¨d fo¨r styrning och ledning [National guidelines for dementia care 2010]. Stockholm: Socialstyrelsen. Nwe Winn Thein, D’Souza, G., & Sheehan, B. (2011). Expectations and experience of moving to a care home: Perceptions of older people with dementia. Dementia, 10(1), 7–18. O¨rulv, L. (2010). Placing the place, and placing oneself within it. Dementia, 9(1), 21–44. Persson, T., & Berg, S. (2009). Older people’s ‘‘voices’’—On paper: Obstacles to influence in welfare states—A case study of Sweden. Journal of Aging & Social Policy, 21(1), 94–111. Persson, T., & Wa¨sterfors, D. (2009). Such trivial matters: How staff account for restrictions of residents’ influence in nursing homes. Journal of Aging Studies, 23(1), 1–11. Pitfield, C., Shahriyarmolki, K., & Livingston, G. (2011). A systematic review of stress in staff caring for people with dementia living in 24-hour care settings. International Psychogeriatrics, 23(1), 4–9. Powers, B. A. (2006). Nursing home ethics. Everyday issues affecting residents with dementia. New York, NY: Springer Publishing Company. Strid, A. -L. (2007). Att arbeta i do¨dens na¨rhet - Rutiner och ritualer i a¨ldreomsorg. Meddelanden fra˚n Socialho¨gskolan 2007:2. Swane, C. (1995). Hverdagen med demens: Billeddannelser og hverdagserfaringer i kulturgerontologisk perspektiv. Copenhagen, Denmark: Munksgaard. Tamura, T., Yonemitsu, S., Itoh, A., Oikawa, D., Kawakami, A., Higashi, Y., & . . .Nakajima, K. (2004). Is an entertainment robot useful in the care of elderly people with severe dementia? The Journals of Gerontology Series A: Biological Sciences and Medical Sciences, 59(1), M83–M85. Tjia, J., Rothman, M. R., Kiely, D. K., Shaffer, M. L., Holmes, H. M., Sachs, G. A., & Mitchell, S. L. (2010). Daily medication use in nursing home residents with advanced dementia. Journal of the American Geriatrics Society, 58(5), 880–888.
Downloaded from dem.sagepub.com at University of Birmingham on May 29, 2015
Harnett
411
Vernooij-Dassen, M., Faber, M., Olde Rikkert Marcel, G., Koopmans, R., van Achterberg, T., Braat, D., & . . .Wollersheim, H. (2009). Dementia care and labour market: The role of job satisfaction. Aging and Mental Health, 13(3), 383–390. Westerberg, K., & Strandberg, S. (2007). Showering is more than resistance: Cognitive interview sequences in residential homes for elderly clients with dementia. Qualitative Research in Psychology, 4(1–2), 15–28. Willcocks, D., Peace, S., & Kellaher, L. (1987). Private lives in public places. London: Tavistock. Winzelberg, G. (2003). The quest for nursing home quality: Learning history’s lessons. Archives of Internal Medicine, 163(21), 2552–2556. Zingmark, K., Norberg, A., & Sandman, P. -O. (1993). Experience of at-homeness and homesickness in patients with Alzheimer’s disease. American Journal of Alzheimer’s Disease and Other Dementias, 8(3), 10–16.
Tove Harnett (PhD) is an associate senior lecturer at the School of Social Work at Lund and at the interdisciplinary Centre for Ageing and Supportive Environment (CASE) at Lund University. Particular areas of interest include power relations in elder care contexts, residential care, and aspects of social policy.
Downloaded from dem.sagepub.com at University of Birmingham on May 29, 2015
Framing spaces in places: Creating ‘‘respite spaces’’ in dementia care settings
Dementia 2014, Vol. 13(3) 396–411 ! The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1471301212474144 dem.sagepub.com
Tove Harnett Lund University, Sweden
Abstract Research on dementia care settings has primarily focused on routine aspects of life, including mealtimes, bathing procedures, etc. However, studies rarely explore how individuals with dementia interact in these settings during the intervals between routines. This study aimed to analyze how residents actively carved out spaces that provided temporary respite from institutional life, termed ‘‘framing respite spaces.’’ Ethnographic data was collected over five months in a dementia care setting in Sweden. Frame analysis was employed to investigate residents’ shared understanding of non-task-orientated situations. The results showed that individuals with dementia adjusted to institutional order, but also actively created respite spaces through conversation. Interestingly, individuals with dementia interpreted conversational cues and often acted logically according to a shared definition of the specific situation. These findings showed that looking beyond task-orientated interactions between staff and residents can provide a more detailed picture of everyday life in dementia care settings. Keywords dementia, frame analysis, ethnography, dementia care settings
Introduction Erwing Goffman’s (1961) notion of the total institution is commonly used by researchers to describe nursing homes and dementia care settings (e.g. Clark & Bowling, 1990; Harnett, 2010; Harper Ice, 2002). Although these settings have some characteristics similar to the total institution, there are fundamental differences that should not be overlooked. Focusing on the similarities between total institutions and nursing homes (cf. Mali, 2008; Winzelberg, 2003) tends to over-institutionalize nursing homes, and can portray an excessively rigid view of nursing home life. Interactions between residents are often neglected and under-theorized in studies on institutional life. However, most of the time, the residents are not interacting with staff or Corresponding author: Tove Harnett, Lund University, Sweden. Email: [email protected]
Downloaded from dem.sagepub.com at University of Birmingham on May 29, 2015
Harnett
397
involved in task-oriented routines (i.e. meals, going to bed, or taking a shower); instead, they are sitting, waiting in the corridor, chit-chatting on the sofa, or looking out of the window. Bearing this in mind, remarkably few studies have included these aspects of resident life. Thus, the present study explored situations that might provide a more detailed understanding of everyday life for individuals with dementia. The approach bears similarities to Kontos’ (2004, 2005) ethnographic research on selfhood and Alzheimer’s disease. However, while Kontos emphasizes aspects of embodiment, this study focuses primarily on verbal interactions (though residents’ practical actions are described for analytical and contextual purposes). Based on a broad-minded notion of frames as a theoretical tool, the aim of this study was to describe and analyze situations that could be interpreted as a method that residents employed to create ‘‘respite spaces,’’ which provided relief or escape from institutional life. The term ‘‘framing respite’’ was defined as the interactions and conversations used by residents to create respite spaces. Even if it was impossible to determine whether the individuals with dementia purposely interacted in this way, it was obvious that they shared ‘‘framed spaces’’ of situations outside of institutional tasks or routines.
Life in dementia care settings Most previous research on life in dementia care settings has portrayed the relationship between the care-providing staff and the care-receiving residents (cf. Berg, Rahm Hallberg, & Norberg, 1998; Eliasson, 1995; Graneheim, Norberg, & Jansson, 2001; Powers, 2006). That approach has provided indispensable knowledge about the routines and tasks of residents, including eating meals (Charras & Fre´montier, 2010; Lin, Watson, & Wu, 2010), getting dressed (Engelman, Mathews, & Altus, 2002), showering (Westerberg & Strandberg, 2007), and taking medications (Tjia et al., 2010). Previous research has also provided important information about how staff members perceived and experienced different aspects of their work, including their views on individualized care (Chappell, Reid & Gish, 2007), their job satisfaction (Vernooij-Dassen et al., 2009), stress (Pitfield, Shahriyarmolki, & Livingston, 2011), routines (Harnett, 2010), and their rituals when residents die (Magnu´sson, 2009; Strid, 2007). Few studies have investigated how residents frame situations that do not belong to typical institutional tasks or routines. Among those studies, McColgan (2005) performed an ethnographic study to examine resistance strategies employed by residents with dementia. That study specifically analyzed the use of resistance strategies in selecting a place to sit in the public areas of the institution. The findings highlighted the irony of staff who, through rearrangements of furniture, often denied residents the simple choice of selecting a place to sit, when sitting was one of their few independent activities. McGolgan’s study showed that people with dementia could be considered both strategically and socially competent.
Interactions and communications Previous studies that focused on interactions in dementia care settings were often based on staff perspectives. For instance, Zingmark, Norberg, and Sandman (1993) discussed communications between residents and caregivers that were related to the experience of homesickness among individuals with Alzheimer’s disease. A Japanese study analyzed communications between individuals with severe dementia and a toy robot (Tamura
Downloaded from dem.sagepub.com at University of Birmingham on May 29, 2015
398
Dementia 13(3)
et al., 2004). Another study by Chappel et al. (2007) operationalized ‘‘individualized care communication’’ with subscales for staff-to-resident communications and staff-to-staff communications, but they neglected communications between residents. In an ethnographic study, Ericsson, Hellstro¨m, and Kjellstro¨m (2011) described interactions between individuals with dementia and cognitively intact individuals (i.e. with the staff) during meals in a nursing home. The study provided important information, but neglected interactions that occurred between residents with dementia and interactions that occurred in the time intervals between institutional routines. However, it is important to note that, during recent years, findings have been published that bring to light the potential of conducting interviews with individuals with dementia (cf. Nwe Winn Thein, D’Souza, & Sheehan, 2011). In the past, individuals with dementia were typically excluded from qualitative research. There were some exceptions; some studies were based on interviews and provided important information about how individuals with dementia experienced everyday life from a first person perspective (cf. Hellstro¨m, Nolan, Nordenfelt, & Lundh, 2007; O¨rulv, 2010; Swane, 1995). Another aspect of current thinking in dementia research has explored bodies and embodiment, articulating a vision in which selfhood is embodied and reproduced through practical and corporeal actions (Kontos, 2004, 2005). Nevertheless, many studies that aimed to explore how residents experienced daily life in these settings often relied on interviews with staff members. One recent example was a mixed method study that investigated ‘‘friendships’’ among individuals with dementia living in long-term care. In that study, staff members were asked about key factors that they believed influenced friendships among residents (de Medeiros, Saunders, Doyle, Mosby, & Van Haitsma, 2012). Although staff members’ views are important for understanding life in dementia care settings, the present study aimed to show that researchers should not neglect the views of residents with dementia when collecting empirical data.
The setting: Sunny Hill This study was based on empirical material collected at a dementia care ward in a non-profit institution called Sunny Hill (Sunny Hill is a pseudonym and pseudonyms are also used for the residents mentioned in the article). Sunny Hill, built relatively recently, was located in a residential section of a medium-sized town (about 100,000 inhabitants) in Sweden. The ward that specialized in dementia was located on the third floor of the building, and it comprised 14 small individual apartments, a kitchen, a dining area, a communal living room, a corridor, a laundry room, a large ‘‘indoor balcony,’’ and a small office for the staff. Fourteen residents, with an age ranged from 80 to 98 years, lived in the ward. Like the majority of Swedish nursing homes, Sunny Hill was funded by the local government.1 All residents at Sunny Hill required assistance with physical activities and those on the ward studied had been diagnosed with dementia. In the analysis of field notes, it became clear that some individuals exhibited more severe dementia than others. In the field notes, a few of Sunny Hill’s residents portrayed themselves as quite intelligible, despite their assignment to a dementia care unit. However, it is important for the reader to bear in mind that the notes represent only a short glimpse of a resident’s life. None of the residents were sufficiently competent to provide informed consent, and I had to constantly remind them that I was a researcher, not a staff member.2
Downloaded from dem.sagepub.com at University of Birmingham on May 29, 2015
Harnett
399
The staff at Sunny Hill stated that they encouraged resident family members to bring personal objects, like photos and paintings, to make residents’ rooms more homelike. In Sweden, there is a trend in policy towards more homelike and less ‘‘institutional’’ care settings (National Board of Health and Welfare, 2010). Nevertheless, many aspects of life in Sunny Hill were far from homelike. Meals were served at fixed times, staff had organized a shower schedule with assigned days for each resident, and residents could not leave the ward without being accompanied by a staff member. Residents were expected to live their private lives in Sunny Hill, which had many characteristics of a public place (cf. Gubrium, 1997; Willcocks, Peace, & Kellaher, 1987). Consequently, the division between public and private places was ambiguous at Sunny Hill, and it was often difficult for residents to find privacy.
Theoretical background for framing Goffman (1974, p. 21) used the idea of frames to describe the outlines of interpretation that allowed individuals ‘‘to locate, perceive, identify, and label’’ events and, thus, interpret meaning that would guide future actions. Later expansions of the frame-concept included, for example, Gordon’s (2008) analysis of how several frames may be combined within the same situation. I used frame analysis in studying resident life in dementia care institutions because frames comprised the situational norms for interactions in a particular situation. However, a situational frame need not be static; it can be continually reconstructed and maintained by each individual’s actions. Frame-switching can be identified by looking for cues, or signals, used by members to indicate a switch in framing. A cue also indicates how a situation will be framed. Despite the fact that all residents at Sunny Hill had dementia, they appeared to be able to interpret each other’s cues and shape their actions according to a shared definition of a given situation.
Methods The role of the observer This study resulted from continuous analytical exploration of previously collected material (cf. A˚kerstro¨m, Jacobsson, & Wa¨sterfors, 2004). The data collection was part of a larger research project that analyzed the influence of residents on nursing home policies (Persson & Berg, 2009; Persson & Wa¨sterfors, 2009). The empirical data used for the present study were field notes from five months of observations at Sunny Hill (February to June 2008). In conducting fieldwork, I ascribed to the advice of Emerson, Fretz, and Shaw (1995), in striving to compose my notes to capture ‘‘scenes’’. To encounter a variety of situations, I was present at Sunny Hill from four to nine hours per day, at different times, and on different days of the week. However, I did not conduct any overnight field work. During this time, I observed nurses and aides, the setting, and the residents. I was accepted into the private rooms of residents, making small talk and listening to their stories and worries. I also joined residents in the ‘‘entertainment’’ activity sessions held on the first floor a couple of days per week. The activity sessions were arranged by two occupational therapists, and they included bingo, movies, qi-gong, and basic handicrafts. My role as an ethnographer was sometimes ambiguous. Previously, I had worked parttime for seven years as a nursing aide in a dementia care unit. This experience made it
Downloaded from dem.sagepub.com at University of Birmingham on May 29, 2015
400
Dementia 13(3)
challenging for me to preserve sufficient distance from the staff to meet the requirements of ethical, rigorous research. Initially, I engaged extensively in personal care for residents (such as assisting with their personal hygiene and eating). However, I subsequently reduced my level of engagement to assist with only impersonal tasks, such as washing dishes and food preparation. I gradually disengaged myself from the staff by not joining in when the staff had a break or a meeting; instead, I walked along the corridor or sat in a resident’s room. To minimize any negative effects of my presence, I engaged in informal interviews with residents. Also, I strived to spend considerable amounts of time with residents in noncaregiving situations, like sitting down to look at photo albums or going for walks. When I began to analyze my field notes, I first considered that my involvement might be a drawback in the study. However, my involvement, and the strategy to spend time with residents rather than staff, could also be seen as a methodological approach for exploring spaces between routine tasks at Sunny Hill. During the analysis the observational data was organized into ‘‘analytic brackets’’ (Gubrium and Holstein, 1997). This analytic approach will be described more in detail below (in the section ‘‘Ways of framing respite’’).
Theoretical approach To explore ways of framing ‘‘respite spaces,’’ this study used an interactionist approach, focusing primarily on verbal interactions. Inspired by Mead (1964) and Kontos (2004), I viewed social interaction as essential for the sense of self. When two people interact, each person observes the other person’s attitude toward them, and this provides an outside view of the self. This way of seeing yourself through the eyes of others requires a certain cognitive ability and little is known about how individuals with dementia interpret social interactions with others. Previous studies of selfhood in Alzheimer’s disease have focused on how individuals use their own bodies, and demonstrated that selfhood persists even with severe dementia, as an embodied dimension of human existence (Kontos, 2004, 2005). Focusing on verbal interactions, this study illustrated that, although a resident’s interactions may seem absurd from the outsider’s point of view, their actions may be logical in the context of a shared understanding (i.e. framing) of the particular situation. I explored interactions that took place in the intervals between task-oriented routines. Specific attention was focused on the residents’ shared understanding of these interactions. Thus, the focus was on ordinary, non-task-oriented interactions taking place when residents sat down in the corridor, when they waited in front of the TV, spent time in their individual apartments or chit-chatted with each other in the sofa. I hypothesized that understanding how a particular situation was framed would provide an understanding of how the framed situation was shared and of how framing shaped the individual’s actions. Compared to interactions described in previous research on dementia care settings, the interactions analyzed in this study were distinct. Interactions interpreted as framing respite spaces were characterized as follows: (a) They were initiated by the residents (not by the staff); (b) They did not involve routines or task-oriented matters inside the institution; (c) They were triggered, or cued, by physical objects within the institution, but referred to life outside the institutional setting; (d) They could take place almost anywhere in time and space, unrestricted by institutional order.
Downloaded from dem.sagepub.com at University of Birmingham on May 29, 2015
Harnett
401
Results and discussion The discovery of resident respite spaces Although residents could not physically leave, or escape, from Sunny Hill without staff member permissions, I became aware of other ways that they interactively ‘‘carved out’’ temporary respite from institutional life. These observations of residents ‘‘framing respite spaces’’ later formed the empirical basis for the present analysis. When residents talked with the staff, it was often about task-orientated matters. It was as if the residents knew that, when a member of staff entered the scene, something was going to happen. It could be a sign that it was time to get up, time for lunch, time for coffee or medication, or time for bingo. Interactions between residents and staff were often framed by institutional matters; these frames were termed ‘‘institutional talk.’’ For instance, staff talked about the food as they served lunch, they gave instructions as they helped with showering, or they talked about the weather when they woke residents in the morning. Sometimes, however, residents might begin to talk to staff about matters that had nothing to do with routines or with Sunny Hill; at these times, staff usually drew residents back to the present by reminding them about an ongoing routine. For instance, a woman resident at Sunny Hill often talked about her ‘‘lovely little boys’’ (i.e. her sons) while the staff served lunch. At these times, the staff often reminded her about the food being served; for instance, that she should eat her peas or that she should not forget her dessert. Through these kinds of reminders, the staff could ‘‘reframe’’ (cf. Gordon, 2008) the situation, by pointing out that this is a meal situation where we eat, not a situation where we talk about our children. Sometimes I was personally involved in interactions with the residents, and at other times I was passively observing, without interacting. When I spent time with residents, they often shared short personal stories and opinions about the life ‘‘out there’’ (i.e. outside of the institution); I asked questions and sometimes told brief stories from my own life. As I observed residents waiting, between meals and before going to bed at night, I discovered that they were framing respite spaces. This observation led to the hypothesis that the time intervals between routine tasks were not merely empty spaces from the resident’s point of view; rather, these intervals were filled with meaningful interactions that framed pockets of respite from institutional life.
Framing everyday life at Sunny Hill A switch of frames changes people’s interpretations of a given situation. For example, in the morning, before starting work at 7 a.m., the staff of Sunny Hill often sat on the sofa in the staff room, engaging in small talk about what to do on the weekend or about TVprograms they had watched the previous night. After a while, someone often commented about the time ‘‘Oh, it is already 10 past seven.’’ This type of comment served as a cue, or signal, for frame switching, from ‘‘small talk’’ to ‘‘job talk,’’ and the night nurse would begin to report information from the previous night shift. This frame-switching changed both the topic and the staff’s behavior. During the ‘‘small talk’’ frame, nurses and aides talked indiscriminately and interrupted each other. However, during the ‘‘job talk’’ frame, the aides became the audience, listening to the nurses. First, they listened to the night shift report; then, they listened to the plan for the day shift. Thus, the staff roles changed according to how a situation was framed. The frames did not make people act like
Downloaded from dem.sagepub.com at University of Birmingham on May 29, 2015
402
Dementia 13(3)
institutional ‘‘dopes’’ (Garfinkel, 1967, pp. 68–69); rather, frames provided members with a repertoire of actions appropriate for different situations. Sometimes, there were competing frames for how to define a particular situation at Sunny Hill. For example, interactions between residents might be framed in one way by the residents and in a completely different way by the staff. In one case, two residents spent a large part of an afternoon looking for a girl that (according to them) had gotten lost somewhere in the living room. The residents framed this situation as ‘‘urgent business,’’ but the staff, as outsiders, framed it as ‘‘dementia talk.’’ The field notes from Sunny Hill also illustrated how frames could be layered (cf. Gordon, 2008); thus, ‘‘respite talk’’ and ‘‘institutional talk’’ were sometimes layered in the same situation. The staff described some activities at Sunny Hill as entertainment. These included bingo, TV-watching, and cake baking. Although these activities were not described by the staff as routine tasks (but rather as a break from routines), they were indeed part of the weekly routines, and thus, they were institutionally framed. During the five months of ethnographic field work, none of the residents were observed organizing or initiating those types of activities. Furthermore, these activities were organized at times and places that were convenient for the staff. If residents wanted to play bingo, they had to do so on Wednesday mornings in the same room every week. If they wanted to go for a walk, they had to wait until a staff member had time to accompany them. Cake baking took place on weekends, and the staff decided what to bake. If a resident wanted some snacks and a beer on a Tuesday afternoon, they had to wait until Friday night, and then, they must sit with the others in front of the TV in the communal living room. Therefore, organized activities at Sunny Hill did not constitute a break with the institutional routine. Contrary to the staff’s intentions, the breaks continued to form an important part of the order and monotony.
Ways of framing respite The observational data was organized into ‘‘analytic brackets,’’ as described by Gubrium and Holstein (1997). Analytic bracketing required breaking down the data into descriptions of either ‘‘what’’ or ‘‘how.’’ For instance, descriptions of what the residents talked about in the intervals between routine tasks were analyzed separately from descriptions of how respite spaces were accomplished, and, in particular, how individuals with dementia interpreted cues, or signals, for framing respite spaces. Typically, a resident’s cue for framing respite was directed to another resident within the institution, but the topic of the talk was focused outside the institution. Analytically, the respite spaces framed by residents fell into two practices, which I termed ‘‘recollection talk’’ and ‘‘worrying talk,’’ defined as follows: Recollection talk. Respite spaces were framed through describing recollections of past episodes that took place before moving to Sunny Hill. This recollection also served as a cue for another resident to get involved in the interaction. Worrying talk. Respite spaces were also framed through an expression of worry to another resident. In these situations, the cue for the ‘‘respite frame’’ was created by a resident’s concern about something ‘‘out there;’’ i.e. not an institutional matter. The frame defined an issue (e.g. when could they go grocery shopping), and the individuals within the frame
Downloaded from dem.sagepub.com at University of Birmingham on May 29, 2015
Harnett
403
were defined as problem solvers with a common interest (e.g. those set on finding out what time they could go grocery shopping). Although recollection-talk and worrying-talk sometimes overlapped or occurred in the same interaction, they were nonetheless distinguished for analytic purposes.
Recollection talk Talking about the past may seem like a natural part of life as individuals age; therefore, it was surprising that residents at Sunny Hill rather seldom talked about their past. When they did talk about the past, it was often a brief comment; for instance, how they had had beautiful flowers in their garden at home or that they remembered something about a teacher they had had in school. Although residents rarely shared long stories about the past with the staff, they sometimes shared long, but disjointed, stories about the past with each other. Sometimes they also told me stories, but only during intervals between routine tasks. When residents included me in their conversations, it was not clear whether they considered me part of the staff, a researcher, or someone else. Occasionally, a resident’s referral to an episode in the past served as cue for framing a respite space. The conversation started with an episode or person in the past and interactively moved somewhere else; often, it became a long, winding story without any references to the institution. One example of frame switching, from institutional matters to a ‘‘respite space’’ is illustrated in the following excerpt from field notes: The members of the staff are in the staff room. Anna, Selma, and Iris sit on the sofa in the day room. I sit in an armchair next to the sofa. Iris asks me what day it is. I tell her it is Monday. Iris turns to Selma, points to her eye, and says she is going to the eye doctor in a fortnight. Then, Selma begins to talk about men. She tells the others that she was young when she first started going out with her husband. They had a lot of fun, Selma says, and they traveled a lot. Selma continues with the comment that her husband is dead now, and she does not want anyone else. Iris turns to Anna and Selma and asks what they should do. Anna asks Iris if she wants to join her in shopping. ‘‘I have to buy a dress’’ Anna says. Anna explains that she wears jumpers most of the time, and therefore needs help buying a dress. Anna adds: ‘‘And men know nothing about clothes!’’
In this example, Iris repeatedly informed the people in the room about a forthcoming routine task, apparently important to her, namely a doctor’s appointment. Then Selma, rather suddenly, started to talk about men; here, she provided a cue for frame switching, and she introduced a new way of defining the situation. Anna and Iris seemed to interpret Selma’s cue, accepted the new definition, and framed their actions accordingly. The members switched frames from ‘‘institutional talk’’ about doctor’s appointments to ‘‘recollection talk’’ about men (and later to talk about shopping). They did not refer to the institution; thus, the talk could be interpreted as a way of framing a ‘‘respite space’’ by interactively moving away from Sunny Hill. In this interaction, Selma did not present herself as a resident in a dementia care institution, but rather, as a person who has traveled and had a lot of fun with her husband. From Selma’s talk about men, the interaction takes a winding detour via Anna’s mention of shopping. Finally, Anna returns to the men-theme by declaring that ‘‘men know nothing about clothes.’’ Here, Anna involved Iris in her ideas about shopping, and then she shared her opinion that men lack shopping knowledge. The interaction described above shows how conversation topics could shift rather quickly and the frame of recollection talk could be combined with talk about the present (cf. Gordon, 2008).
Downloaded from dem.sagepub.com at University of Birmingham on May 29, 2015
404
Dementia 13(3)
At times, recollection talk could constitute the framing of an entire coherent respite episode. During these episodes, individuals would talk about their past for relatively long periods of time without interruptions from staff that might switch the frame from ‘‘past’’ to ‘‘present’’ or from ‘‘there’’ to ‘‘here.’’ Given that all residents had dementia, they had varying capabilities for telling a coherent story. One example of a long recollection story occurred when the residents had just finished a rather confused game of bingo on the first floor. As the staff members helped the residents to return to the third floor, some residents, including Bertil and Sven, had to wait in the therapy room for the staff to come back for them. The following account illustrates an example of a longer recollection, using an excerpt from field notes of the conversation of the individuals waiting in the therapy room: Two men, Bertil and Sven, sit around the table. Bertil turns to me and asks where I come from. I tell them that I come from Lund, in Ska˚ne (a region in southern Sweden). Both Bertil and Sven tell me that they had spent time in Ska˚ne, when they were young. Bertil says he was forced to pick sugar beets in the fields outside Lund when he was completing his military service. Bertil talks with enthusiasm about what it was like to pick sugar beets when the ground was frozen. They used a pitchfork to get the beets up in one piece, but sometimes, the beets split. For an area 20 by 20 meters, they got paid 20 kronor. But, Bertil points out, other people got paid 22 kronor for the same job. Sven nods, but he does not say anything. Bertil tells us that he slept on a sofa in a barn, and that they had gotten up to a lot of mischief during the nights. Sven tries to say something, and mumbles that he has also picked sugar beets, but he has difficulty getting the words right.
This excerpt illustrated how Bertil’s question about my origin (given my Southern accent) served as a cue for framing the situation. Through Sven’s and Bertil’s recollections of their youth in the south of Sweden, they created a respite space, where Bertil was the main character, and Sven was a supporting actor who confirmed the story and also acted as part of the audience. Through his story, Bertil presented himself as a person who has coped with hard times. Bertil’s talk about his past could be interpreted as a way to characterize himself as something more than a nursing home resident. The shared respite space provided Sven and Bertil with a means for interactively moving to a different time in a different place, far away from Sunny Hill and its institutional order. In another instance, I had asked Margit if she wanted to go out for a walk. Instead, we remained in her room for nearly an hour, as she told me about her past and her family: I knock on the door to Margit’s room. ‘‘Come in,’’ she says. I enter the room and ask Margit if she wants to go out for a walk. But Margit does not answer. Instead, she walks to a shelf and looks at some photos. I stand next to her. She shows me the photos and talks about her daughter. Margit tells a story about when the daughter got married and how her sister-in-law fixed Margit’s daughters hair for the wedding. Margit then tells me that she used to work at a clinic. She started working in the clinic when she was only 18 years old, and she even received a gold medal in the end. We continue to look at more photos. Margit shows me photos of her five siblings and says that all are dead. She shows me photos of her husband and tells me that he is dead too. Then, she shows photos of her grandchildren and great grandchildren. Margit talks about her home and that it is no longer there. She misses her home, but explains that she has been very ill and that she was no longer able to live at home by herself. Her daughter has helped her a lot, but she has her own family now. ‘‘Here is my kitchen’’ Margit says, and shows me the sink and the little cooking area. She explains that she can make coffee there. I try
Downloaded from dem.sagepub.com at University of Birmingham on May 29, 2015
Harnett
405
to explain who I am and why I am visiting, but I am not sure she understands. I tell Margit that I also have five siblings. Margit says it is unusual to see families with many children nowadays. Margit points at two paintings on the wall and says that they were painted by a doctor from Poland. She talks about the doctor and says he was a wonderful doctor and a wonderful person, but he had problems with his nerves, which you can see in some of his paintings (according to Margit). The paintings are all rather abstract, painted in black and brown.
Here, Margit had presented herself in two entirely different ways. First, through her recollection talk, she presented herself as a family member, a mother, grandmother, greatgrandmother, sister-in-law, and sister; in addition, she was a loyal employee, emphasized by her information about the gold medal she received from her previous employer. Then, Margit shifted the frame, and presented herself as a nursing home resident, as she indicated her room and cooking facilities. Thus, Margit and I had moved in and out of frames, from recollection talk to the present. The two different frames appeared to be layered (cf. Gordon, 2008) in the same interaction. When I mentioned that I had five siblings, just like her, it seemed to serve as a bridge between the past and present. In Margit’s statement that it was uncommon to see large families nowadays, there was an implicit comparison between the past and present, with her lifetime belonging to the past and mine to the present.
Worrying talk Expressions of worry were common at Sunny Hill. The residents worried about all kinds of matters, including their family members, cooking, being late for work or school, etc. Sometimes, their worries clearly referred to the institution; for instance, a resident might worry about another resident’s health or that the staff might be working too hard. At other times, they expressed worry about things outside of the institution. In these situations, it became evident that a situation was sometimes interpreted differently by individuals in different positions. When two residents with dementia worried about something, they often interpreted each other’s conversational cues and acted logically according to a shared definition of the situation. Usually, they did not question the other person’s worry, but rather, got engaged in it. The mutual definition often had nothing to do with institutional order and could be interpreted as a way of framing ‘‘respite space’’ from institutional life. In contrast, when the staff observed residents worrying about something outside of Sunny Hill, they often defined this as ‘‘dementia-talk;’’ i.e. that the worry was not to be taken seriously, but rather, as a sign of dementia. Hence, the staff would not act according to the resident’s frame of the situation; rather, they would try to introduce a competing frame. In a typical example, some of the residents were talking about gardening, and they worried about when they might have time to do the weeding in their gardens. The residents framed this as worrying-talk. Then, the staff introduced a competing frame by referring to the institution; for instance, they might interrupt and ask the residents if they wanted to go to the kitchen to see if the coffee was ready. It was not surprising that the staff framed these situations differently from the residents with dementia. However, it was striking that people with rather severe dementia could interpret cues and adjusts their behavior according to a shared definition of a particular situation. Many of the topics that residents in Sunny Hill worried about appeared to be absurd or confused (e.g. when to go to school, how to find their mother, when to do their
Downloaded from dem.sagepub.com at University of Birmingham on May 29, 2015
406
Dementia 13(3)
gardening, etc.). However, once the residents had created a worrying frame, the worrying was quite real. In addition, the interactions within the frames were often logical. For instance, it may seem absurd that two 90-year-old women would worry about when to go to school. However, they interacted in a logical way, interpreted conversational cues, and adjusted their behavior according to a shared definition of what was going on. An example of this type of interaction in worrying talk is illustrated in the following excerpt: Iris and Esther sit on the sofa by the TV. In front of the sofa, there is a table with a pile of old magazines. Esther looks in one of the magazines at a page with Christmas recipes and shows a photo to Iris. Esther and Iris begin to talk about meat. Esther explains that she is worried that there are forgotten pieces of meat lying around somewhere. Esther says that the meat may be on the toilet. Iris appears very worried and asks what the meat looks like. Esther says it is probably wrapped up in paper. Iris opens her red handbag and looks inside it. She takes up a little handkerchief and says that at least she does not have the meat in her handbag. Iris and Esther then continue to talk about the preparation of meat. Esther says that you cannot just serve raw meat; you need to cook it first. Iris asks the others in the room if they have had any food today. Vera, a woman sitting in a wheel chair next to the sofa, says she has eaten. Iris says that she has not had any food all day.
Here, Esther provided a first cue for framing the situation by showing Iris the photos of the recipes; i.e. this is a situation about food. The worry about the forgotten meat opens up many alternative ways of interpreting the situation. For instance, Iris could ignore Esther or comfort her by saying that she does not need to worry about any meat. Instead, Iris shapes her behavior according to the worrying frame suggested by Esther. Iris and Esther play roles of two worrying friends trying to solve a problem. By initiating the meat ‘‘search,’’ Esther becomes the ‘‘expert,’’ providing information to Iris by explaining what the meat might look like (wrapped in paper). Esther also presents her cooking knowledge by explaining that meat needs to be cooked and not served raw. It is clear that Iris and Esther have acted according to a shared frame of the situation, even though the framing may seem absurd to an outsider. The excerpt also illustrates that, despite severe dementia, Iris and Esther had certain social competencies. For instance, they could actively interpret each other’s cues for situational framing, and they adjusted their behavior accordingly. This interaction also illustrated a way of framing a respite space away from the institution. Through mutual framing of the situation, the residents could talk about matters that had nothing to do with Sunny Hill and its routines; thus, they interactively created a respite space from institutional order. A similar interaction took place on another day between two other women. This situation was unusual, because both women touched and talked to a cushion as if it were a cat. Greta and Selma sit on the sofa. Greta picks up one of the cushions and begins to pet it, as if it were a cat. She snuggles up with the cushion; she kisses it and holds it in front of her face, as if she were talking to it. Greta then turns to Selma and asks: ‘‘Is it yours?’’ ‘‘Is there no name on it?’’ Selma wonders. Greta begins to inspect the cushion. After a little while, she places the cushion on the table in front of the sofa. Greta and Selma seem to be confused; for a long time, they discuss to whom it (the cushion) may belong. Finally, Greta rises from the sofa, takes her walker, and leaves the room.
Downloaded from dem.sagepub.com at University of Birmingham on May 29, 2015
Harnett
407
Here, Greta’s question ‘‘Is it yours?’’ served as an interactional ‘‘hook’’ (cf. Goffman, 1963) for Selma to get involved in the conversation. Although we cannot know what Selma thought about the cushion, she appeared to interact according to Greta’s definition of the situation. She did not question Greta when she kissed the cushion, and Selma acted worried when they could not determine who owned the cushion. Thus, they interacted, not as members of an institution, but as two worried friends trying to solve an urgent problem. Again, through their mutual focus on the cushion and the intense worrying talk, they framed a situation that could be interpreted as a respite space from the institution and its order. As in the previous excerpt, they interacted logically within the frame, although the topic of conversation seemed absurd.
Shifting and combining frames The interactions at Sunny Hill included situations in which several frames were layered or combined in a single interaction. Staff members often combined or shifted frames to accomplish specific tasks. For example, one evening, at 8 p.m., only one resident, Greta, was watching TV; all the other residents were in bed. Residents were usually in bed when the night staff started their shift at 9 p.m. In this case, the staff member asked Greta if she wanted to go to bed, but Greta said she did not want to go. This caused a mismatch in expectations; therefore, the staff member decided to accomplish the task by combining task-oriented framing with playful framing. The staff member took Greta’s hands and started dancing. They danced all the way to Greta’s bedroom. Taking Greta’s hands and dancing established a play frame by sending the metamessage (cf. Gordon, 2008) ‘‘this is play.’’ Simultaneously, however, the staff member’s physical actions (guiding Greta to her room and to bed) established a task-oriented frame by sending the message ‘‘it is time to go to bed.’’ Thus, combining frames was used to accomplish a very specific task. Sometimes, frame disputes occurred between staff and residents. However, these disputes rarely developed between residents. When residents framed ‘‘respite spaces,’’ it was a collective achievement; residents did not question each other, but instead got involved and followed a logical interaction order.
Conclusions Sometimes researchers describe how a person with dementia is in his or her own little world (Beck, 1996). The findings from this study show that people with dementia may not only be in their own individual worlds, but they may indeed share experiences with each other and have shared understandings of how a situation should be framed. This study revealed a number of interesting findings. First, frame analysis represented a novel method for studying individuals in dementia care settings and for understanding interactions in these settings. The primary finding was that individuals with dementia did not simply passively adjust to institutional order; they also actively carved out temporary respite spaces from institutional life. The residents at Sunny Hill commonly used two methods for framing respite spaces: 1) by recollection talk and 2) by worrying talk. Due to the difficulty in finding physical privacy in dementia care settings, it is crucial to understand how residents can achieve interactional respite from the institutional order in these settings.
Downloaded from dem.sagepub.com at University of Birmingham on May 29, 2015
408
Dementia 13(3)
At Sunny Hill, framing task-oriented situations followed certain common ‘‘rules’’: The staff member was the ‘‘expert,’’ who gave instructions or guidance (‘‘take your pill,’’ ‘‘sit down,’’ ‘‘eat some more’’), and the resident followed instructions (or at least was supposed to do so). These implicit rules made framing task-oriented situations rather predictable. In contrast, framing non-task oriented situations was relatively unpredictable, but not necessarily illogical. This study showed that individuals with dementia were able to interpret cues related to framing, and then act logically according to a shared definition of the frame. This suggested that individuals with rather severe dementia retained certain social competencies. The findings also confirmed other studies that reported staff members’ descriptions of resident talk as ‘‘dementia-talk.’’ This suggested that, once the label Alzheimer’s was applied, even normal behavior may be interpreted in terms of disease stages (Gubrium & Lynott, 1987; Lyman, 1988, 1989). To understand resident life in dementia care settings, it is important to analyze resident framing of situations that are not related to task-oriented routines. Because most of the time spent in these settings is not related to task-oriented routines, these situations represent aspects of life that may be of great concern to the residents. Framing can be interpreted as a multilayered, complex activity in the day-to-day life in dementia care settings. By studying these situations, we may gain a more detailed picture of everyday life in dementia care settings. Combining frames of past and present experiences and layering ‘‘institutional’’ frames with ‘‘respite spaces’’ may serve to bridge dimensions that are constantly at odds in resident interactions. Individuals that live in dementia care settings are members of an institution, but they have also lived most of their lives independent of this setting. Based on the observations of this study, I suggest that future researchers should continue critical analyses of framing of everyday situations in all forms of institutional care. Researchers should be careful not to reduce residents’ lives to only the situations guided by task-orientated routines. Situations that do not belong to institutional order represent a large part of life in all kinds of institutions. Further research is required to understand these situations more fully. This study demonstrated that, by looking beyond task-orientated situations between staff and residents, we gained a more detailed picture of everyday life for people living in dementia care settings. Acknowledgements I am deeply grateful for the valuable comments provided by Dr. David Wa¨sterfors and Dr. Leili Laanemets on the drafts of the article. I also thank two anonymous reviewers for providing important comments that helped to improve the manuscript.
Conflict of interest None declared.
Funding This research was carried out within the context of the School of Social Work at Lund University and of the interdisciplinary Centre for Ageing and Supportive Environment (CASE) at Lund University, funded by the Swedish Council for Working Life and Social Research.
Downloaded from dem.sagepub.com at University of Birmingham on May 29, 2015
Harnett
409
Notes 1. In Sweden, local governments are responsible for providing organizational and financial support for all types of care for people over 65 years old. The municipal authorities also have considerable freedom in the interpretation of this responsibility, and they levy local taxes and fees for the care of aged individuals. 2. The study was approved by the Linko¨ping ethical board (Reg. no. 102-08).
References A˚kerstro¨m, M., Jacobsson, K., & Wa¨sterfors, D. (2004). Reanalysis of previously collected material. In C. Seale, G. Gobo, J. Gubrium, & D. Silverman (Eds.), Qualitative research practice (pp. 902–942). London, UK: SAGE. Beck, C. T. (1996). Nursing students’ experiences caring for cognitively impaired elderly people. Journal of Advanced Nursing, 23(5), 992–998. Berg, A., Rahm Hallberg, I., & Norberg, A. (1998). Nurses reflections about dementia care, the patients, the care and themselves in their daily caregiving. International Journal of Nursing Studies, 35(5), 271–282. Chappell, N. L., Reid, R. C., & Gish, J. A. (2007). Staff-based measures of individualized care for persons with dementia in long-term care facilities. Dementia, 6(4), 527–547. Charras, K., & Fre´montier, M. (2010). Sharing meals with institutionalized people with dementia: A natural experiment. Journal of Gerontological Social Work, 53(5), 436–448. Clark, P., & Bowling, A. (1990). Quality of everyday life in long stay institutions for the elderly. An observational study of long stay hospital and nursing home care. Social Science & Medicine, 30(11), 1201–1210. de Medeiros, K., Saunders, P. A., Doyle, P. J., Mosby, A., & van Haitsma, K. (2012). Friendships among people with dementia in long-term care. Dementia, 11(3), 363–381. Eliasson, R. (1995). Forskningsetik och perspektivval [Research ethics and choice of perspective] (2nd ed.). Lund, Sweden: Studentlitteratur. Emerson, R. M., Fretz, R. I., & Shaw, L. L. (1995). Writing ethnographic fieldnotes. Chicago, IL: University of Chicago Press. Engelman, K. K., Mathews, R. M., & Altus, D. E. (2002). Restoring dressing independence in persons with Alzheimer’s disease: A pilot study. American Journal of Alzheimer’s Disease and Other Dementias, 17(1), 37–43. Ericsson, I., Hellstro¨m, I., & Kjellstro¨m, S. (2011). Sliding interactions: An ethnography about how persons with dementia interact in housing with care for the elderly. Dementia, 10(4), 523–538. Garfinkel, H. (1967). Studies in ethnomethodology. Englewood Cliffs: Prentice-Hall. Geertz, C. (1983). Local knowledge: Further essays in interpretive anthropology. New York: Basic Books. Goffman, E. (1961). Asylums. New York, NY: Penguin Books. Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. New York, NY: Prentice Hall. Goffman, E. (1974). Frame analysis: An essay on the organization of experience. Cambridge, MA: Harvard University Press. Gordon, C. (2008). A(p)parent play: Blending frames and reframing in family talk. Language in Society, 37(03), 319–349. Graneheim, U. H., Norberg, A., & Jansson, L. (2001). Interaction relating to privacy, identity, autonomy and security. An observational study focusing on a woman with dementia and ‘behavioural disturbances’, and on her care providers. Journal of Advanced Nursing, 36(2), 256–265. Gubrium, J. (1997). Living and dying in Murray Manor. New York, NY: St. Martin’s Press. Gubrium, J., & Holstein, J. (1997). The new language of qualitative method. New York, NY: Oxford University Press.
Downloaded from dem.sagepub.com at University of Birmingham on May 29, 2015
410
Dementia 13(3)
Gubrium, J. F., & Lynott, R. J. (1987). Measurement and the interpretation of burden in the Alzheimer’s disease experience. Journal of Aging Studies, 1, 265–285. Harnett, T. (2010). Seeking exemptions from nursing home routines: Residents’ everyday influence attempts and institutional order. Journal of Aging Studies, 24(4), 292–301. Harper Ice, G. (2002). Daily life in a nursing home: Has it changed in 25 years? Journal of Aging Studies, 16(4), 345–359. Hellstro¨m, I., Nolan, M., Nordenfelt, L., & Lundh, U. (2007). Ethical and methodological issues in interviewing persons with dementia. Nursing Ethics, 14(5), 608–619. Kontos, P. (2004). Ethnographic reflections on selfhood, embodiment and Alzheimer’s disease. Ageing and Society, 24(6), 829–849. Kontos, P. (2005). Embodied selfhood in Alzheimer’s disease: Rethinking person-centred care. Dementia, 4(4), 553–570. Lin, L. -C., Watson, R., & Wu, S. -C. (2010). What is associated with low food intake in older people with dementia? Journal of Clinical Nursing, 19(1–2), 53–59. Lyman, K. A. (1988). Infantilization of elders: Day care for Alzheimer’s disease victims. In D. Wertz (Ed.), Research in the sociology of health care (pp. 71–103). Greenwich, CT: JAI Press. Lyman, K. A. (1989). Day care for persons with dementia: The impact of the physical environment on staff stress and quality of care. The Gerontologist, 29, 557–560. Magnu´sson, F. (2009). Att tala om a¨ldres do¨d: en kulturanalys [Talking about older people’s death. A cultural analysis]. Malmo¨, Sweden: Liber. Mali, J. (2008). Comparison of the characteristics of homes for older people in Slovenia with Goffman’s concept of the total institution. European Journal of Social Work, 11(4), 431–443. McColgan, G. (2005). A place to sit: Resistance strategies used to create privacy and home by people with dementia. Journal of Contemporary Ethnography, 34(4), 410–433. Mead, G. H. (1964). On social psychology: Selected papers. Chicago, IL: University of Chicago Press. National Board of Health and Welfare [Socialstyrelsen]. (2010). Nationella riktlinjer fo¨r va˚rd och omsorg vid demenssjukdom 2010 – sto¨d fo¨r styrning och ledning [National guidelines for dementia care 2010]. Stockholm: Socialstyrelsen. Nwe Winn Thein, D’Souza, G., & Sheehan, B. (2011). Expectations and experience of moving to a care home: Perceptions of older people with dementia. Dementia, 10(1), 7–18. O¨rulv, L. (2010). Placing the place, and placing oneself within it. Dementia, 9(1), 21–44. Persson, T., & Berg, S. (2009). Older people’s ‘‘voices’’—On paper: Obstacles to influence in welfare states—A case study of Sweden. Journal of Aging & Social Policy, 21(1), 94–111. Persson, T., & Wa¨sterfors, D. (2009). Such trivial matters: How staff account for restrictions of residents’ influence in nursing homes. Journal of Aging Studies, 23(1), 1–11. Pitfield, C., Shahriyarmolki, K., & Livingston, G. (2011). A systematic review of stress in staff caring for people with dementia living in 24-hour care settings. International Psychogeriatrics, 23(1), 4–9. Powers, B. A. (2006). Nursing home ethics. Everyday issues affecting residents with dementia. New York, NY: Springer Publishing Company. Strid, A. -L. (2007). Att arbeta i do¨dens na¨rhet - Rutiner och ritualer i a¨ldreomsorg. Meddelanden fra˚n Socialho¨gskolan 2007:2. Swane, C. (1995). Hverdagen med demens: Billeddannelser og hverdagserfaringer i kulturgerontologisk perspektiv. Copenhagen, Denmark: Munksgaard. Tamura, T., Yonemitsu, S., Itoh, A., Oikawa, D., Kawakami, A., Higashi, Y., & . . .Nakajima, K. (2004). Is an entertainment robot useful in the care of elderly people with severe dementia? The Journals of Gerontology Series A: Biological Sciences and Medical Sciences, 59(1), M83–M85. Tjia, J., Rothman, M. R., Kiely, D. K., Shaffer, M. L., Holmes, H. M., Sachs, G. A., & Mitchell, S. L. (2010). Daily medication use in nursing home residents with advanced dementia. Journal of the American Geriatrics Society, 58(5), 880–888.
Downloaded from dem.sagepub.com at University of Birmingham on May 29, 2015
Harnett
411
Vernooij-Dassen, M., Faber, M., Olde Rikkert Marcel, G., Koopmans, R., van Achterberg, T., Braat, D., & . . .Wollersheim, H. (2009). Dementia care and labour market: The role of job satisfaction. Aging and Mental Health, 13(3), 383–390. Westerberg, K., & Strandberg, S. (2007). Showering is more than resistance: Cognitive interview sequences in residential homes for elderly clients with dementia. Qualitative Research in Psychology, 4(1–2), 15–28. Willcocks, D., Peace, S., & Kellaher, L. (1987). Private lives in public places. London: Tavistock. Winzelberg, G. (2003). The quest for nursing home quality: Learning history’s lessons. Archives of Internal Medicine, 163(21), 2552–2556. Zingmark, K., Norberg, A., & Sandman, P. -O. (1993). Experience of at-homeness and homesickness in patients with Alzheimer’s disease. American Journal of Alzheimer’s Disease and Other Dementias, 8(3), 10–16.
Tove Harnett (PhD) is an associate senior lecturer at the School of Social Work at Lund and at the interdisciplinary Centre for Ageing and Supportive Environment (CASE) at Lund University. Particular areas of interest include power relations in elder care contexts, residential care, and aspects of social policy.
Downloaded from dem.sagepub.com at University of Birmingham on May 29, 2015
