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Language, dementia and meaning making: Navigating challenges of cognition and face in everyday life. Note in Extract 2b below how the topic of the bell collection emerges from the previous topic of Ms. Todds marriage. Phonetics and social action in agreements and disagreements. I think youre- youre spot on Rhonda its- its act- actually ((Janet nods head)) A [letter [From my reading about this its- its a letter. 21. about (.) Each Swedish utterance is given an English translation in italics beneath it. In all sessions, visitors sat on a bench or in wheelchairs in front of the artwork. The first author asks Jim several close-ended demographic questions that Jim easily answers. And then, looking back, he must have gotten it from my grandfather. Half her body is now outside the shower cabin, her left arm touching the basin behind her. In addition, it helps the participants avoid focusing on sensitive parts of the body. Institutional discourse. New York, NY: The Huntington Disease Society of America. ), Thinking about dementia: Culture, loss, and the anthropology of senility (pp. Minna: (R) Ivan: 06. Markus responds: First, um like, for like (pause) to early (pause) very late 80s, we knew it was there, but we didnt, we knew that I was here, and of course, my uncle, he uh, he was diagnosed at the time. Heritage (Eds. As it turns out, part of the difficulty is that the author is working with an incorrect premise that Markus has difficulty correcting: that he knew of his uncles HD prior to his own genetic test. Anna continues rubbing the residents left arm, and when she arrives at Siris hand, she bends her upper body down so as to come closer to the residents hand with her gaze (Fig. The cooperative transformative organization of human action and knowledge. What questions might you pose? While the first author did cobble together a basic sense of Jims narrative or experience through the responses to these numerous close-ended questions, the responses largely lack the detail needed for analyses. Moa: 36. Hoboken, NJ: Wiley. Although the test can determine whether someone has inherited the gene that causes HD, it does not confer diagnosis. Medina: 26. I like fairies. 204 M. Halpin and N. Richard To resolve this tension, and to balance inclusivity, data quality, and bioethics, we suggest conducting tandem interviews when participants have pronounced cognitive symptoms. Uh I dont know. Ove: 33. A change-of state token and aspects of its sequential placement. 72. (xx) looks at Adila--------->> smiles; tilts head aside lazemlen trab ahmar jdid, (.) So I went to [university] and I got checked into [the clinic], and ah, that was about 3 to 4years ago, ah 4years. 08. Oh [thats neat. [To fix the light into the room? But its a very minor case. Given that Jim 10 Dementia and the Life Course: Examining Cognitive Decline 201 is in his early 70s and the majority of individuals with HD succumb to symptoms in their 40s50s, Jims assessment seems plausible to the first author. Take copious notes while interviewing persons with dementia to ensure topics are not obscured by tangents or diversions. Cognitive-communicative disorders of aging and dementia. 10. Debbie argues that, in some ways, HD has improved her life, encouraging her to let go of certain stressors. 11. Similarly, clarifying questions by providing a range of potential response options might complicate, rather than simplify, the question, as asking a participant to select among different response options might require increased cognitive effort. At this moment, when the water is raining down from Oves head, Moa likens him to a sport diver. 08. Tarapata, K., & Murrary, C. (2011). Thinking Point Imagine yourself offering a positive assessment of a painting in the room you and a friend are occupying: A: What a beautiful landscape. Pomerantz, A. How do the visitor and Ms. Todd then navigate the challenge of this memory gap? Drew and Heritage (1992, p. 39) refer to specialized institutional turn-taking systems that influence such conversational features as turn design and sequence organization. 144 A. R. Isaac and H. E. Hamilton In the following exchange, participants are about to discuss Napier Wallers Christian Waller with Baldur, Undine, and Siren at Fairy Hills,2 a large painting that depicts a 1930s-era young woman sitting outside on the grass surrounded by three dogs. [hello ------- zaratek shoufi your plants look (1.1) ((Stina leaves hold of the plant; steps forward on the floor gazing at A)) shou dakhalltili bi zarati what do you put in my plants *makes a hand point* moves the tray with soil aside---(0.5) +smiles------------------------+ hhhhh(. Cambridge, UK: Cambridge University Press. By emphasizing the initial syllable while making an extended hand pointing at the table with potted plants, she describes the event as something worthy of attention. For instance, in reflecting on the experience of Debbie, who feared future cognitive decline despite showing no present evidence of such symptoms, medical providers may become more conscientious of the role that a feared future plays in patients present-day concerns. Some plants are from exotic fruit seeds that her son has bought for her. In this they noted that while affiliation and agreement generally are sought from others; when provided, however, they must respect the parties information territories and their associated epistemic rights (Heritage & Raymond, 2005, p. 36). 58. Of these 193 questions, 156 (81%) queried something (that could be assumed to be) within a guides epistemic domain; 37 of these 193 questions (19%) queried an aspect of a visitors epistemic domain. Beyond the stigma of Alzheimers. Journal of Pragmatics, 46(1), 823. And what the disease can do to you. With the interview seemingly back on track, the first author situates the breakdown as a typical miscommunication, which often occurs during in-depth interviews, particularly when sensitive topics are addressed. Just as a form of interest. Analysis focuses on five illustrative cases, drawn from a sample of 43 in-depth interviews with members of the HD community. The epistemics of social relationships: Owning grandchildren. Mr. Wayne: Visitor: Mr. Wayne: Visitor: Mr. Wayne: We raised them. (1995). In Section2, we then explored dyadic conversations within assisted living apartments that included topics that were triggered by objects in clear view. As Freda is moving toward Diane, Diane produces another like-assessment in line 04, at which point Penny then produces her supportive recommend: Freda you should get that. Freda here then produces her assessment, No I dont like it. It is unclear whether Fredas utterance is a second assessment to Dianes and Pennys original assessments or whether it is just responsive to Pennys prior turn in line 05, but, regardless, by this point, both Diane and Penny have made several commitments to their assessments, and as a result, require validation or treatment interactionally by their placement. 11.9 Repotting activity (Source Author) that emanate from unclear boundaries. Anna: siri: varsgod here you are +hands over a towel to Siri+ tack thank you (2.0) va sta dom hr handdukarna e how pretty these towels are javisst erom gulliga yes they are cute arent they sna hr skulle ja beh- (.) The Arabic-speaking resident received information about the project in her language. This is 182 M. S. Smith perhaps the crux of this chapter: being prepared for such anomalies may, in fact, assuage the non-impaired participant of any negative assessment or interactional obligations felt toward the person with dementia. In line 24, the care worker turns her body aside and withdraws the shower tube (Fig. First, Scott discusses meeting a psychiatrist prior to learning of his genetic status. Pomerantz defined second assessments as assessments produced by recipients of prior assessments in which the referents in the seconds are the same as those in the first (Pomerantz, 1984, p. 59). 47. Although Markus is considerably impacted by 10 Dementia and the Life Course: Examining Cognitive Decline 205 the symptoms of HD, the three of us have a nearly two-hour interview. 2. Goffman, E. (1967). (1982) provided early empirical evidence of what these scholars termed context- or stimulus-boundedness. More recently, Bayles and Tomoeda (2014, pp. Well collect- start collecting fairies and Ill buy you some They are just angelical arent [they? Heritage 9 Disagreements in Assessment Sequences with Persons 169 and Raymond have shown that in many situations, assessments can also be used for asserting exclusive or singular epistemic or relational rights to specific forms of knowledge. 11.6 (0.7) he he he ((laughter)) ---------- faktiskt really bends her upper body down------------>> #fig. 21. Now, your co-participant might issue a second assessment that agrees: B: Yes, it is lovely. Goodwin, C. (2000). The doctor had an envelope and he opened it. He had all kinds of. ), The morality of knowledge in conversation (pp. As the visitor refers to the month of March, Mr. Wayne begins to speak (lines 5 and 7), linking the bridges depicted in the photograph (like this) to his memories of aspects of nearby geography (the lowlands of the Carolinas down there). Dementia, 9(4), 517534. Freda: Diane: The lady down here at (this) place I used to sell at everything I was a wonder of [the world= [Ive never been down there= =and Ive known her for years and years =(xxxx) 174 M. S. Smith Extract 3: Wonder of the World (2) ((Penny is talking to a stranger couple in a novelty shop)) 05. The reader will note that the guides initial questions did not select specific aspects of the objects of joint attention in the way that Rhondas question did. Mother did. Arriving where the repotting is occurring, Medina turns away from Adila and places her wheelchair in a position right in front of Stina, who is standing at the table with the plants. Yeah. 06. She greets Adila, steps forward and moves aside a tray with soil. Zeisel, J. In response to this inquiry, Darla explains that one could open the window with the cords: They were () you could pull em on a cord couldnt you if I remember (at the top of them) this uh- the light and- and the air too (lines 1618). Despite Ivans negotiations, the continuation of the interaction, marked by opposition and complaining, embodies the vulnerability that frames the care encounter. ), Learning from the Talk of Persons with Dementia, The Language of Mental Health, https://doi.org/10.1007/978-3-030-43977-4_11 209 210 G. Jansson Introduction Disability can necessitate care that involves transgressing customary social rules concerning privacy. Medina: 22. Indeed, unlike the first authors interview with Jim, or his first interview with Markus, he is able to document the vivid and detailed accounts needed for qualitative analyses. 8 Meaningfulness at the Intersection of Knowledge 151 As you envision this conversation, consider what comments you might use to engage the residents. 3See Appendix for transcription conventions. Diagnosis, psychiatry, and neurology: The case of Huntington disease. After discussing the data, the analysis is divided into two sections. [And I like Mary and the baby too. Any disability necessitating intimate care involves transgressing customary social rules concerning privacy. 19. New Brunswick, NJ: Rutgers University Press. Summary Huntington Disease provides both an opportunity to view dementia as a process and a means to reflect on how different stages of dementia confront researchers and health care providers with varying challenges. He passed away from a stomach condition. 11. Following Adilas reaction, Medina starts laughing (line 09). 10. As Anna continues massaging the residents hands and arms (lines 1017), Siri indicates that she takes care of her hands, emphasizing she plays the piano, which Anna approves. Mm hmm. In this we see, much like normal individuals, the speaker can interrupt components-in-progress in order to insert ones that belong earlier (Schegloff, 1992, pp. 73. Assessments Assessments are conversational actions that participants produce in interaction in which one individual constructs an utterance either with one or more partstechnically Turn Constructional Units (TCU) that contains both a referent (the assessable) and the actual assessment, or value statement, of that assessable. Boston, MA: Little, Brown and Company. Minna: 11. In these sequences, institutional representatives typically maintain greater knowledge regarding the topics of talk and exercise greater discursive control over the trajectory of the interaction than do the lay participants (Drew & Heritage, 1992; Freed, 2015; Freed & Ehrlich, 2010; Heritage & Clayman, 2010). Moa: 16. hadjeh. (2005). The lead guide typically stood next to the painting while one to two additional guides sat in chairs next to the visitors on either side of the bench. In G. Watson & R. M. Seiler (Eds. (2015). I Shouldnt Be Here: Advanced HD Symptoms The last cases are drawn from interviews the first author completed with individuals with advanced HD. Professional vision. We then see that the guides third-position utterance displays a change-of-state token as in the oh-prefaced follow-up question Oh so you like to- to ventilate the house? (line 21). In M. Nevile, P. Haddington, T. Heinemann, & M. Rauniomaa (Eds. Second Assessments inthe Talk ofa Person withFTD In the context of this first extract, the patient, Freda, and her caregiver are looking through a novelty and collectible shop near the patients house. The ambiguity of these two spaces and the associated challenges has been emphasized in the research literature on care work (Hauge & Heggen, 2008; Twigg, 1999, 2000). Goodwin, C. (2013). (man) fr st p h(h)nderna yes you may do that yea (.) 10 Dementia and the Life Course: Examining Cognitive Decline 199 Part of the difficulty the first author encountered was the contrast between Markus discussion of politics and their formal interview. Anna: (2.0)+massages Siris back with lotion------> va sknt de va p ryggen oh that felt good on my back ----------------------------------+ m:m (.) This mutual orientation of the participants bodies toward the region of the residents body they are discussing and working with creates a public focus of attention, allowing the private to remain private. Discourse, consciousness, and time: The flow and displacement of conscious experience in speaking and writing. The answer is difficult to interpret. From a qualitative methodological perspective, Scotts experience emphasizes issues with context and dementia symptoms. What special joy may be sparked? Hultgren, A. K., & Cameron, D. (2010). What objects from years ago do you see (books, jewelry, furniture, dishes, vases, toys)? What about the one with the red roses on it that says love has a sound that hearts always hear? At the beginning of the interview, Scott notes he is keeping an active social life, running three times a week, rain or shine. Furthermore, to ward off HD symptoms, Scott says I challenge my mind by teaching myself new things I practice math, languages. From the care workers procedural talk preceding the extract, the task of undressing, except for the shoes, has been carried out when the extract begins. As a result, Freda, or others who display similar problems, is seen as being emotionally distant, self-centered, or emotionally disinhibited. While this wasnt the case for the first open-ended q uestion Jim was asked, it became an issue in the remainder of the interview. Diane: Penny: Diane: Penny: Penny: Freda: Penny: Diane: Freda: Diane: Freda: Diane: Freda: Diane: Penny: Freda: Diane: Penny: ????? The first author completed two such interviews, one of which was a follow-up interview with Agatha and Markus nearly a decade after the initial interview. After seven seconds only the sound of running water, the care worker introduces a joke (lines 1213), kan man se som lite morrongymnastik samtidigt (.) Well, thats, thats one thing. At her but what I want to do is-, (Extract 1B, line 06) Freda suddenly cuts off her own production (line 07) and inserts something she displays as belonging earlier: the assessment. Boston, MA: Wiley. Ove: 08. The first author visits Scott in his downtown apartment, where he lives alone. Annas reply, de kan jag skaffa till 11 Public and Private Spaces in Residential Care 213 dej (I can buy them for you) contributes to the portrayal of the towels as semi-public objects, detached from personal ownership, and something one can observe and admire from a distance, something Siri admires and would like to have as her own. Extract 1 illustrates the ambiguity to which this chapter is devoted. Moa: 32. Allow, as much as possible, for the person with dementia to control the direction of the talk (e.g., they might initiate questions about the object, tell you something about it, or provide assessments in response to your own). In this specific extract, Penny has just looked to something and called Fredas attention to it, through a summons, a directive, and then finally an assessment to the assessable: flowers. 9 Disagreements in Assessment Sequences with Persons 171 Extract 1: Gardenias 01. In M. Nevile, P. Haddington, T. Heinemann, & M. Rauniomaa (Eds. [Mmm Mmm hmm. Okay. She is now inside the shower cabinet and close to the residents body. In the sequence above, Anna and Siri praise the towels, but the towels are portrayed as no ones private possession. Extract 2 exemplifies such a strategy. Searle, J. R. (1969). The last casesJim and subsequent tandem interview with Markus and Agathaoutline difficulties and strategies for interviewing individuals with advanced dementia. Whereas Adila and Siri have lived at the care facility for several years, Minna and Ove are rather new admittances. The extracts below attend to care workers use of bodily conduct to maintain an aspect of spatial privacy for residents during these care activities. Embodied interaction: Language and body in the material world. Minna: 09. Cultivating a culture of thinking in museums. 19. With respect to the knowledge asymmetries that play out in such patterns of interaction, the participant with relatively greater epistemic access to a particular knowledge domain is said to have greater epistemic status (Heritage, 2012). How are these instances of (dis) agreement related to what they know or feel about the objects theyre talking about? 154 A. R. Isaac and H. E. Hamilton Extract 2b: Bell collection (part 1) 01. Practical Highlights 1. [(Uh huh) Uh seemed like somebody (.) This is a- beautiful meadow. Background A burgeoning area of research within the field of human interaction has centered on processes of meaning-making that result from the reflexive relationship between unfolding interaction and the material surround (e.g., Goodwin, 1994, 2000, 2013, 2017; Nevile etal., 2014; Streeck, Goodwin, & LeBaron, 2011). Cambridge, UK; New York, NY: Cambridge University Press. The open-ended question that starts this exchange addresses a central paradox of the HD experience, namely that someone can have the gene for HD but not yet manifest any of the symptoms (see Halpin, 2018). Section2: From theArt Gallery tothe Home: The Readers Turn toApply andAnalyze In the second section of this chapter, the reader has opportunities to explore these insights through pedagogical activities, first by stepping into the role of a potential conversational partner to consider how conversations might be facilitated by objects in the environment in both public spaces (e.g., hallways and dining rooms) (Activity 1a) and private spaces (e.g., photographs and collectibles) (Activity 1b), and, secondly, by taking on the role of a discourse analyst, evaluating conversations that were recorded inside two residents apartments (Activity 2a) and comparing them to the art gallery interactions above (Activity 2b). Birmingham, AL: University of Alabama Press. Cambridge, UK: Cambridge University Press. This trend continues in the interaction, though in the next turn, Freda produces something that is significant: 178 M. S. Smith Extract 4B: Its Broken 11. Freda: [Yeah^, I kno:w^ but what I want to do isthat [its my wonder of= =the world I want to go down and cross and go back to this: Freda: Yeah, I know that its my wonder of the world but what I want to do is I want to go down and cross and go back. 69. The timing and lexical choices of participants in producing assessment activities is connected to the general preference structures found in adjacency pairs; 168 M. S. Smith with preference here being the normative organization, where deviations from the norm are accountable by and/or problematic for participants (Ogden, 2005, p. 1755). 10 Dementia and the Life Course: Examining Cognitive Decline 193 While describing the meeting, Scott begins a tangent about his life overseas that lasts several minutes. 441464). Turning first to the language used by the visitor, note the question posed in line 27 (What made you collect bells?) and the memory gap that it uncovers in Ms. Todd 8 Meaningfulness at the Intersection of Knowledge 155 (lines 2832). 02. 13. 195217). yea where did you buy them de var lnge sen it was a long time ago 11 Public and Private Spaces in Residential Care 227 07. now you can wash yourself I will take care of the water then). 04. Social Science and Medicine, 73(6), 858865. Interrogative structures of American English. 68. 8 Meaningfulness at the Intersection of Knowledge 141 The extracts in this chapter were taken from three hour-long tours involving visitors in the early stage of dementia, as these visitors exhibited a greater degree of interactional engagement (asking more questions and attending more fully to the guides questions) than did the visitors in later stages of the disease. So some things might come out the wrong way in a brief sentence, whereas he cant totally bring across his total way of feeling. Rather than providing an abrupt or disinterested response to the first authors questions, Agathas interview suggests Markus might have been frustrated by feeling like he incompletely expressed his opinion. It is to these interactions that we now turn.

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