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Repetitional responses in frontotemporal dementia discourse: Asserting agency or demonstrating confusion? Lisa Mikesell Discourse Studies 2010 12: 465 DOI: 10.1177/1461445610370127 The online version of this article can be found at: http://dis.sagepub.com/content/12/4/465
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Article
Repetitional responses in frontotemporal dementia discourse: Asserting agency or demonstrating confusion?
Discourse Studies 12(4) 465–500 © The Author(s) 2010 Reprints and permission: sagepub. co.uk/journalsPermissions.nav DOI: 10.1177/1461445610370127 http://dis.sagepub.com
Lisa Mikesell
University of California, Los Angeles, USA
Abstract Frontotemporal dementia (FTD) is a young-onset neurodegenerative dementia that primarily affects social behaviors. This paper examines the use of repetitional responses in FTD discourse, finding that patients often use repeats to assert agency or epistemic authority (i.e. to claim rights to knowledge). For example, repetitional responses are often used by patients to exert some autonomy when their interlocutors display a belief about the patients’ lack of knowledge about basic functioning. FTD has been associated with echolalia, the meaningless use of repetition; however, this analysis shows that the use of repetitional responses in FTD discourse can be meaningful and thus suggests that, at least in early stages of the dementia, echolalia is not always an accurate characterization of FTD patients’ use of repetitional responses.
Keywords agency, discourse, echolalia, epistemic authority, frontotemporal dementia, repetition
1. Introduction to frontotemporal dementia and study participants Frontotemporal dementia (FTD) is a young-onset neurodegenerative dementia affecting the frontal and/or temporal lobes (Mendez and Perryman, 2002; Ratnavalli et al., 2002), and is reported to be the second most common degenerative dementia following Alzheimer’s disease (AD) (Keane et al., 2002; Snowden et al., 2002). FTD belongs to a cluster of disorders, which consists of three subtypes including two language variants: progressive non-fluent aphasia and semantic dementia. The third subtype – the focus of Corresponding author: Lisa Mikesell, Semel Institute Health Services Research Center, Department of Psychiatry and Biobehavioral Sciences, University of California, Los Angeles, 10920 Wilshire Blvd, Suite 300, Los Angeles, CA 90024, USA. Email:
[email protected]
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this report – is sometimes referred to as the behavioral variant (or bv-FTD1). While many dementias such as AD are known to cause cognitive deficits (Molloy and Lubinski, 1991), such dysexecutive symptoms are generally absent in this (behavioral) type of FTD until degeneration has spread profusely in the brain (Bozeat et al., 2000). The most noticeable declines associated with FTD involve social functioning and changes in personality. Behaviors reported in the literature include a range of social deficits: violations of interpersonal space, inflexibility, hypersexual behavior such as inappropriate touching and compulsive masturbation (Grossman, 2002), changes in affect, lack of concern for others (Neary et al., 2005) or lack of empathy (Kipps et al., 2007), and impaired social emotions such as embarrassment (Miller et al., 2001); patients may also become impulsive and/or verbally and physically disinhibited (Jagust et al., 1989). FTD diagnosis has been noted to be particularly problematic, often resulting in misdiagnosis (Graham, 2007). One problem is that, although evidence of brain degeneration is used to corroborate diagnosis (Osimani and Freedman, 1991), there is no definitive biological marker for FTD (Mendez et al., 2005). Rather, the current diagnostic criteria consist solely of behavioral measures (see Appendix I for diagnostic criteria; Neary et al., 1998). Another problem is that FTD patients lack insight into their own condition, meaning they are unaware that their behaviors and personality have changed (Kipps et al., 2007). As a result, the descriptions of FTD behaviors that come to be used for diagnosis stem from observations during clinical interviews (i.e. in structured institutional settings) and from second-hand reports of caregivers (Kipps et al., 2007). While such reports are valuable and necessary, alone these reports do not seem to be sufficient for documenting FTD behaviors (Kipps et al., 2007). The diagnostic criteria have been reported to be particularly problematic, with ‘approximately two-thirds of patients eventually [being] diagnosed with FTD not meeting any of the behavioral diagnostic criteria upon initial presentation’ (Mendez et al., 2005; see also Mendez and Perryman, 2002). Others have reported the diagnostic criteria to be subjective and to lack reliability (e.g. Rascovsky et al., 2007). FTD does not appear to be a homogeneous dementia. Patients have been reported to present with distinct behavioral profiles. Snowden et al. (1996), for instance, describe three different variants of FTD: an apathetic variant, a disinhibited variant, and a stereotypic variant. More recent reports (e.g. Snowden et al., 2001), however, discuss only two variants: a disinhibited variant and an apathetic variant. The disinhibited variant tends to affect the orbitomedial frontal and anterior temporal regions of the brain and causes individuals to become socially inappropriate and overactive, while the apathetic variant is more commonly associated with degeneration of the dorsolateral frontal cortex; apathetic patients, in addition to being apathetic, have also been described as bland, lacking volition, unmotivated, and mentally rigid (Snowden et al., 2002). Although the division of an apathetic and disinhibited variant is not always a clean one and some report patients to display characteristics of both profiles depending on context (Kipps et al., 2007), the two patients in this study, ‘Steve’2 (SD in the transcripts) and ‘Romeo’ (RO in the transcripts), seem to be aptly described by the characteristics of the apathetic profile. Both subjects are male; Steve was 72 at the time of recording while Romeo was 62. Both patients have been described as lethargic, unmotivated, and as lacking spontaneous and creative speech, and both men often need to be prompted to participate
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in conversation or collaborative activities. The data from which this research draws consist of two hours of naturally occurring interaction, one hour recorded in each patient’s home. Other participants in the data include ST and AM, the two primary ethnographers for Steve and Romeo, respectively; the spouses of Steve and Romeo: ‘Anne’ (AD) and ‘Juliet’ (JU); and Steve’s primary hired caretaker, CT. The two hours of video data from which this study stems belong to a database from the Social Relations of Frontotemporal Dementia Research Group, of which the author is a member. Steve was visited for 50 hours over approximately six months, and six hours of ordinary interaction were video recorded, while Romeo was visited for 70 hours over the course of 16 months, and 35 hours of video were recorded. The two hours of data were chosen based on 1) the time of visit (these are both early visits to Steve and Romeo, roughly one month into their participation) and 2) the type of activity the participants were involved in (both visits center around meal times). The interactions take place in the participants’ homes and consist of ordinary or routine activities.
2. Using conversation analysis to examine FTD interactions As social behavior can be observed and analyzed in social interactions and through the conversational practices employed within them, this article uses conversation analysis (CA) (which requires audio- and, to a large extent, video-recording) to investigate a particular language practice observed in FTD speech. As noted by Goodwin (2003: 7), CA has devised ‘rigorous analytical methods for describing the procedures participants use to construct meaningful talk and action . . .’. Obvious questions thus arise: are FTD patients using different procedures than those used in ordinary discourse or are they using the same procedures that we find in ordinary discourse? If they are using the same procedures, are they using them for different aims or functions? In an attempt to examine the social interactions of FTD patients, this research began by exploring some noticeable conversational devices in FTD discourse that seemed to occur with rather high frequency. This article focuses on one of these practices: the use of repetitional responses. The nature of the interactions between FTD patients and their interlocutors is in many ways ‘mixed’. Although the data were collected from ordinary conversation, the caregivers, family members, and researchers who participated in the interactions are aware of the diagnosis of the patient and have observed and experienced various personality changes and behavioral declines. Thus conversations often take on an institutional ‘flavor’. For instance, patients must often respond to directives relating to daily functioning (see for example, Extracts 5 and 6 later), and they are often asked test questions or what Dunn called training questions (reported in Goody, 1978), that is, questions to which first speakers already know the answer, often in an effort to gauge the patients’ capacities or accuracy of their response or to encourage more active participation (see Extract 12 later).
2.1. Some benefits of using CA to examine FTD discourse practices As noted above, one of the features and core diagnostic criteria (Neary et al., 1998; see Appendix) of FTD is a loss of insight: an unawareness or ignorance of one’s behavioral
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and personality changes and abilities. A common behavioral consequence of lack of insight is that when patients are asked if they are facing any difficulties or have experienced any changes, they typically report that everything is fine (for recorded examples of patients’ ‘no problem reports’ in the clinic, see Avineri, in press). As such, patients cannot be interviewed or surveyed about their behavioral changes or the progression of their disease. Additionally, an ethnographic account of FTD patients, while beneficial because of its emphasis on systematic observation of real world behaviors, also has limitations when it comes to understanding many patient behaviors. One limitation has to do with the fact that several of the behavioral criteria for diagnosing FTD are language related deficits: stereotypy of speech, economy of speech, and echolalia are a few examples (Neary et al., 1998; see Appendix). Additionally, some of the core diagnostic criteria, such as a decline in interpersonal conduct (Neary et al., 1998), may also reference patients’ use of language given that communicative practices are used to initiate and maintain relationships. Given that language and discourse practices are often difficult to describe (see Mikesell, in press, who mentions that FTD caregivers are less likely to report verbal management practices that they employ to discourage or stop disruptive behaviors than they are to report behavioral management practices) and given that the functions of discourse practices may not be analytically accessible from observations in real time (i.e. without repetitive viewing of details easily forgotten or overlooked), ethnographic accounts may pose shortcomings. Although there are limitations to ethnographic observation, its value should not be dismissed. My own participation as an ethnographer in the Social Relations of FTD Research Group was quite valuable, as were the ethnographic perspectives of my colleagues, in guiding me to ask particular questions and examine particular interactional practices more carefully in the video data. For instance, the primary ethnographers, ST and AM, who visited the two apathetic patients in this study each made note of the patients’ use of repetitional responses. ST remarked that Steve’s repetition was not echolalic, which is one of the supporting diagnostic criteria (Neary et al., 1998; see Appendix): [Steve] was very quiet. Repeated a lot of what was said to him, but it wasn’t blind parroting. He would be asked ‘are you tired’ and he would say ‘yes I’m tired’. Tons of that kind of discourse. (ST, 17 July 2006, field notes)
and AM noted that Romeo’s use of repetition may have changed over time. One of Romeo’s strategies is to just repeat back the most recent thing said. I feel like this is new. (AM, 22 August 2007, field notes)
These initial observations motivated further inquiry, inquiry that resulted in the findings presented below. Nevertheless, without being certain of the exact linguistic form and without a thorough understanding of the contexts in which such forms are employed, it is difficult to know if patients’ use of repetition is meaningless and thus truly echolalic, which is how it has been described in the literature, or if patients are using repeats systematically. Indeed, this study shows that patients’ use of repetition is often motivated; yet given that echolalia is one of the diagnostic criteria, it may be concluded that commonsense understandings of patients’ use of repetition can conflict with the current report
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(see Schegloff, 1996: 169, for a discussion on how ‘empirically grounded results’ may be ‘at variance with our commonsense intuitions about how some action is accomplished . . .’).
3. Motivation for the study In a recent report, Mikesell (2009) describes two of Steve’s common conversational practices: responding to Wh-questions with I don’t know and repeating all or part of the just-prior utterance of his interlocutor. She illustrates how these practices are sometimes treated by interlocutors as appropriate and other times present problems. With regard to repeats, for instance, Extract 1 shows problematic uses of repetitional responses (lines 3 and 5): Extract 1 1 ST: 2 3 → SD: 4 ST: 5 → SD: 6 7 ST: 8 9 10 ST: 11 SD: 12 13
W’l what about Cathy. I’ll be the- (.) you be the guy. I’ll be the guy. I’ll be the girl. You be the girl. (2.3) So, (6.0) ((ST is holding paper up pointing where to begin. ST and SD looking at newspaper)) So you start. (1.0) ((SD leans forward to see newspaper)) Does my stomach look as fat as it did yesterday, Cathy?
In Extract 1, ST and Steve have agreed to read a comic strip aloud together, an activity they have done before. After ST suggests that they read Cathy, he proposes that Steve read the male character’s part and that ST read the female character’s part, which Steve confirms in lines 3 and 5. Steve’s character reads first in this comic strip, but rather than read his character’s line following the end of the pre-activity negotiation (line 5), there is silence (line 6). ST then provides a subtle prompting to begin the activity with a standalone so, which Raymond (2004: 186) finds is used when speakers ‘find themselves ‘‘out of sync”’ and a participant may be uncertain about when an action is due or what type of action is due. This subtle prompting is unsuccessful in encouraging a response from Steve. ST then produces a more explicit directive – So you start. (in line 10), and Steve responds by reading his character’s first line. In this extract, Steve repeats part of ST’s turns in lines 3 and 5 while modifying the pronouns to reflect the speaker transition. Regarding this example, Mikesell (2009) notes that although Steve’s use of repetition indicates a positive knowledge state (i.e. he clearly displays that he has understood the terms of his interlocutor’s turns), later in the sequence he shows uncertainty about how the activity is to transpire. The repetitional responses in Extract 1 (lines 3 and 5) seem to be mere displays of understanding, which Steve is later unable to demonstrate when a specific action is required
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(Mikesell, 2009). In this way, such uses of repetition point to a problem. Steve’s turns containing repeats are here locally treated as unproblematic (i.e. immediately following Steve’s repeats, there is no indication of concern or confusion from the interlocutor); however, once a demonstration of Steve’s displayed understanding is required, Steve’s interlocutor must often do extra work, such as provide explicit directives to elicit an appropriate demonstration from Steve. Mikesell (in press) documents similar dissociations – that is, displays of understanding but subsequent inability to demonstrate such understanding – in a disinhibited (i.e. non-apathetic) FTD patient with perseverative behaviors. This may suggest that these kinds of dissociations in behavior are a common attribute of FTD interactions more generally and not specific to the apathetic variant. In contrast to Extract 1, many of Steve’s repetitional responses do not point to a problem in his understanding. Rather they are used to resist assumptions embedded in an interlocutor’s previous utterance (discussed in section 5). While Extract 1 could very well be an example of echolalia (or meaningless repetition), the majority of unproblematic instances of repetition seemed to be employed to show resistance.3 An examination of apathetic patients’ use of repetitional responses across contexts reveals that these same apathetic patients, described as passive and lacking motivation, often use repetitional responses in a manner that shows that they are still motivated to claim rights to knowledge, and repetitional responses provide them with a means with which to assert agency when those rights are compromised. In other words, patients do not lack motivation in all respects; rather their use of repeats shows that they retain some motivation to present themselves as competent individuals. Using conversation analysis (CA), this article explores this competence as it is evidenced in patients’ use of repetitional responses.
4. Review of epistemic authority and repetition in ordinary conversation 4.1. Epistemic authority and claiming access to knowledge in assessment sequences Heritage and Raymond (2005: 16) show how important it is for participants in a variety of settings to demonstrate their epistemic rights or access to a particular claim or matter at hand. They state, . . . conversationalists treat one another as possessing privileged access to their own experiences and as having specific rights to narrate them (Pomerantz, 1980; Sacks, 1984); journalists distinguish between firsthand and derivative access to breaking news as relevant for the rights to describe it (Raymond, 2000; Roth, 2002); callers to 911 emergency services report matters in quite distinctive terms if they are bystanders to an incident rather than victims (Whalen & Zimmerman, 1990); and patients offer medical diagnoses to physicians only under relatively particular circumstances (Gill, 1998: Gill & Maynard, forthcoming). In each of these cases, the distribution of rights and responsibilities regarding what participants can accountably know, how they know it, whether they have rights to describe it, and in what terms is directly implicated in organized practices of speaking.
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They examine assessment sequences, showing how second speakers can demonstrate their epistemic authority following a first assessment. In such sequences, they find first position assessments can be produced as unmarked first assessments (i.e. usually simple declaratives as in example 1 below), Example 1 [VIYMC 1:4] (from Heritage and Raymond, 2005) 1 J: Let’s feel the water. Oh, it … 2 → R: It’s wonderful. It’s just right. It’s like bathtub water.
downgraded first assessments which may include evidentials like seems in example 2, Example 2 [SBL 2–1-8:5] (from Heritage and Raymond, 2005) 1 Bea: hh hhh We:ll, h I wz gla:d she c’d come too las’ni:ght= 2 → Nor: =Sh[e seems such a n]ice little [ l a dy ] 3 Bea: [ (since you keh) ] [ dAwf’l ]ly nice l*i’l 4 p*ers’n. t hhhh hhh We:ll, I[: j’s ] 5 [I thin]k everyone enjoyed jus
or upgraded first assessments which may incorporate interrogative syntax (as shown in example 3), and which ‘mandates a second assessment’ by making an answer to the question a conditionally relevant next move (21). Example 3 [SBL: 2–1-8:5] (from Heritage and Raymond, 2005) 1 Bea: 2 3 Nor: 4 Bea: 5 Nor: 6 → Bea:
Wz las’night th’firs’time you met Missiz Kelly? (1.0) Me:t who:m? Missiz Kelly? ^Ye:s. hh[Yih kno]:w whatY’know where they ar:e
