Article
Storytelling in dementia: Embodiment as a resource
Dementia 12(3) 359–367 ! The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1471301213476290 dem.sagepub.com
Lars-Christer Hyde´n Linko¨ping University, Sweden
Abstract In narrative research about persons with dementia, much research focuses on individual storytellers and their stories often stressing the discursive or textual aspects of stories. As persons with Alzheimer’s disease generally have difficulties in telling stories according to often implicit narrative norms, they may appear to be less competent and agentive than what is actually the case. In the article, I argue for a change of focus from the textual aspects of narratives and the story as a product, to a focus on performative aspects and the embodied aspects of storytelling. A focus on the storytelling activity implies a change from the individual storyteller to the interaction with other participants in the storytelling situation. Drawing on two particular cases of storytelling, I stress the collaborative and embodied aspects of storytelling and argue that embodiment is less an individual expressive phenomenon than it is an interactive resource. Keywords dementia, embodiment, narrative, performance, storytelling
Alzheimer’s disease (AD) is a degenerative disorder of the brain that primarily results in cognitive deficits and losses. Among the most prominent and early symptoms are selective deficits in especially episodic memory, attention and executive functions – although other symptom presentations may occur (Hodges, 2006; Morris & Becker, 2004). These symptoms are often followed by other cognitive impairments in semantic memory, and also increasing linguistic deficits like anomia and, later on, simplified and stereotyped utterances and repetition (Macoir & Turgeon, 2005). These impairments have consequences for persons with AD making participation in everyday activities more complicated (Giovannetti, Libon, Buxbaum, & Schwartz, 2002; Vikstro¨m, Josephsson, Stigsdotter-Neely, & Nyga˚rd, 2008). Storytelling can be viewed as central to everyday activities in which people engage and one of the most important means we have for sharing experiences and negotiating identities Corresponding author: Lars-Christer Hyde´n, Center for Dementia Research (CEDER), Linko¨ping University, 581 82 Linko¨ping, Sweden. Email: [email protected]
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(Heath, 1983; Ochs & Capps, 2001). Storytelling is also a very complex social, cognitive and linguistic activity that means that persons with AD will have problems telling and understanding stories (Small, Geldart, & Gutman, 2000). In narrative research about persons with dementia, much research focuses on individual storytellers and their stories (see for instance Alema´n & Helfrich, 2010; Angus & Bowen, 2011; Beard, Knauss, & Moyer, 2009; Crisp, 1995; Malthouse, 2011; Mills, 1997; Phinney, 2002; Stewart, 2009; Surr, 2006; Westius, Andersson, & Kallenberg, 2009). This research often stresses the discursive or textual aspects of stories like coherence. As persons with AD generally will have increasing difficulties in telling stories because of the implicit narrative norms, they may appear to be less competent and agentive than what is actually the case. One way to deal with the risk of not understanding what persons with dementia are expressing in storytelling, I suggest, is to change the focus from the textual aspects of narratives – the story as a product – to performative aspects, that is, the actual telling of stories in conversations in order to attend to the embodied aspects of storytelling (Hubbard, Cook, Tester, & Downs, 2002; Hyde´n & O¨rulv, 2009). A focus on storytelling also implies a shift from the decontextualized individual storyteller to his/her interaction with other participants in the storytelling situation (see for instance Davies, 2011; Davies & Gregory, 2007; Hyde´n, 2011; Molyneaux, Butchard, Simpson, & Murray, 2012). Stressing the collaborative aspects of storytelling as well as the embodied aspects further shifts the focus of embodiment as an individual expressive phenomenon to the ways in which it serves as an interactive resource (Young, 1997). In the following, I would like to briefly discuss an approach to storytelling involving persons with AD that emphasizes both the collaborative aspects of storytelling as well as the importance of embodiment as an interactive resource. Such an approach opens possibilities for social scientists as well as clinicians and relatives for understanding people with dementia as storytellers by shifting away from a primarily textual focus to include also embodiment and enactment.
Embodiment, narrative and storytelling Although the concept embodiment may mean different things (for an overview of embodiment in the narrative field, see Hyde´n, 2013), there are two aspects of embodiment that are of particular interest here. First, individuals who participate in conversational storytelling are physically present to each other. This implies that they can use their bodies as communicative resources because bodies are visible ‘objects’ to which it is possible to ascribe meaning (Goodwin, 2000a; Kendon, 1990). Conversational storytelling is in that respect embodied. Second, modern cognitive neuroscientists, as well as phenomenological philosophers, have argued that experience and various kinds of knowledge are modally embodied (Gallagher, 2005; Gibbs, 2006). In telling autobiographical stories this implies that we make use of embodied experiences like visual perception as well as motor actions, both when we tell stories and when we listen to stories (Bolens, 2012; Nelson & Fivush, 2004). Autobiographical memories are thus modally embodied and bodily enacted through the telling (Gibbs, 2006; Kontos, 2004). This view of embodiment and storytelling has certain consequences for understanding storytelling in AD. When cognitive functions like planning, remembering, as well as linguistic abilities used in storytelling become impaired, the person with dementia can use other resources in combination with still fully functional abilities. Instead of gestures
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accompanying words in a story, gestures can take the lead role with words only stressing or supporting bodily gestures, or gestures may even replace words entirely. This implies that the verbal narrating of an event may be partially or totally substituted by the bodily enactment of the event. This adaptive compensation entails a restructuring both of the relationship between the teller’s various cognitive and semiotic resources used in storytelling as well as between the participants in the storytelling situation, (cf. Goodwin, 2000b). That is, as the person’s ability to communicate linguistically declines, he/she may resort to other semiotic resources using his/her body to physically enact and perform memories of past events, as well as making use of the conversational partners’ semiotic and cognitive resources (Hyde´n, 2011; Medved, 2007). I turn now to two examples from two of my own research projects in order to further illustrate and elaborate these ideas. The first example is from an interview study involving couples, and the second from an ethnographic fieldwork study at a residential care unit for persons with dementia.
Sharing a bodily memory The first example is from an interview with two persons that have been married for almost 50 years – Linda and Oswald (pseudonyms). Oswald has mid-stage AD and has severe problems with both finding words and constructing complete utterances. The interview is part of a larger ongoing research project involving joint interviews with ten couples where one spouse has AD (for more information about the study, see Hyde´n, 2011). The aim of the project is to understand the strategies couples use to deal with the consequences of AD – in particular linguistic and cognitive (especially memory) loss – when telling joint stories about shared experiences. The interviews involve several narrative tasks; the couples are, for example, requested to tell stories about their shared life. The study is longitudinal with interviews conducted once a year as long as possible with the couples. The interviews are video-recorded to facilitate analysis of the interaction between the spouses. Hence, the focus is on collaborative storytelling and remembering, rather than on the stories themselves (Hyde´n, 2011). In the first interview the couples are invited to jointly share the history of their relationship: when they met, married, had children, etc. Although Oswald had severe problems finding words and constructing utterances, he and Linda succeeded to cover a great deal of their joint life history in the interview. They did this mainly by Linda ‘scaffolding’ the storytelling, which involved such strategies as asking clarifying questions in a format that Oswald could follow, and presenting possible interpretations of Oswald’s utterances (for a more detailed explication of the concept scaffolding, see Hyde´n, 2011). In that way it becomes possible for Oswald to continue as an active partner in the storytelling. At some points in the interview, Oswald had severe difficulties finding words for communicating events he appeared to remember. As a result he had to restructure the relationship between spoken language and other bodily resources. Instead of relying primarily on words, he had to use gestures in order to get Linda to understand what he was referring to, with words assuming a more general indicative function. In this process it also became evident that Oswald’s memories were embodied memories of an event – and it appeared that Linda was also able to recount this embodied memory. One such occasion was when Oswald initiated a small story about a sailing event (Example 1). In this example Oswald not only makes use of gestures to outline parts of this event, but he is also
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successful in bringing forth a memory based on embodied motor experiences of sailing which then prompts further comments by both himself and Linda. Example 1
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33
Oswald:
Linda: Oswald: Linda: Oswald:
Linda:
Oswald: Linda: Oswald: Linda: Oswald: Linda: Oswald:
I remember when we were at at the cape we were going to ttt turn o yes and that it was good Mmm we had a one that we went like so ((makes gestures with his hands outlining the turns of the boat)) and then down right so ((makes gestures with his hands outlining the turns)) and then that one out so ((makes gestures with his hands outlining the turns)) it went okay Yes thanks to the kids who knew more than we did Linda she knows she knows a lot well no I’m not good at sea things yes you are at least you know some things I didn’t know anything about the boat wasn’t interested but I you were very clever with the boat yes I was aaaa I aaa it was yes
In Lines 1–4 Oswald presents an ‘abstract’ of the story: having to get around a cape. Linda confirms that she also remembers this event (Line 5). Then Oswald continues to talk about what they actually did (Lines 6–17). He clearly has word-finding issues when describing the event; he starts, but then cannot find the word he apparently is searching for, but continues nonetheless. When he could not find the word he was searching for, he relied upon gestures to enact and thus describe the event (Lines 12, 14, 16). On Line 17 he evaluates the story events by saying ‘it went okay.’
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His gestures describe the different turns they made with their sailboat. Further, the gestures are made against a background of an imagined map space: there is an up and down, left and right, but also the specific geography of the land they had to round. What is enacted is the trajectory of the boat’s and crew’s movements seen against the visual properties of the sea and land (‘we went’) – events in the ‘storyworld’. This indicates that Oswald is using an embodied memory of the experiences from the sailing event rather than referring to an abstract non-modal representation of the event. It appeared Linda was able to remember the same event based on Oswald’s enactment (Lines 5, 8, 18), thus indicating that they both are referring to a shared embodied experience. From the ensuing exchange in the example, it is also evident that the couple uses this story in order to affirm and demonstrate their relationship and affection for each other (Lines 19–33) and in this way also to show and assert their shared identity as a couple.
‘Storyworld’ and ‘here-and-now’ As the disease progresses, persons with AD will increasingly have problems constructing a verbal narrative discourse that connects various specific events together into a coherent story; that is, to communicate ‘the storyworld’ (Herman, 2009; Young, 1987). In spite of this, many persons with dementia will often keep their pragmatic abilities related to the ‘here-and-now’ world of the storytelling activity, even until very late in the disease process (Macoir & Turgeon, 2005). That is, they are still good at sustaining the relationship between the participants in the storytelling situation. This introduces another possibility for dealing with loss, namely by shifting emphasis from the discursive storyworld to the social functions of the story enhancing the relations between the participants and using bodily resources like touch, eye contact, etc. In a second study, video recording took place during 5 months at a residential care unit in Sweden serving eight residents, seven of whom were diagnosed with some form of dementia, mostly of the Alzheimer’s type (for further details see O¨rulv & Hyde´n, 2006; Hyde´n & O¨rulv, 2009, 2010). Two women – Martha and Catherine (pseudonyms) – were often engaged in storytelling. Both women were diagnosed with AD; Martha is quite fluent verbally, but has severe cognitive impairment, while Catherine is less fluent verbally having word-finding problems and also has severe cognitive impairments. During an observation they were videotaped sitting and conversing for some 30 minutes on a bench waiting for lunch to be served. During this time period Martha told a story about getting a driver’s license. The story was organized around several sub-themes such as deciding to get a driver’s license, learning to drive, and buying a car. In a conversation, ideally these sub-themes form a part of a temporally progressing story with some events happening first, and then giving place for succeeding events. When Martha tells her story, this higher order temporal organization of the narrative is problematic and even missing; the temporal relation between the sub-themes is broken up and the sub-themes are told without any internal temporal organization. Further, some sub-themes are repeated without Martha or Catherine noting it or expressing any concern about the repetition. Martha’s rendering of the sub-themes of the story, in contrast, is generally well organized, and in most cases ends with an evaluation of the events. The evaluation is of special interest because in all these instances, its interactional organization has a similar structure where Catherine is drawn in together with Martha, the teller, in appreciating the point of the story as it is enacted bodily.
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In the following excerpt Martha is referring to having bought a car herself in spite of her husband not believing she would be able to learn to drive. The telling about this specific event ends with the evaluation found in Example 2. Example 2
1a 1 2 3 4 4a
5 5a 6 7 7a
Martha:
Catherine: Martha:
Catherine: Martha:
8 9 9a
Catherine: Martha:
10
Catherine:
((seeking eye contact)) ’’oh ss sure I can’’ I said [‘‘one can’’] [(not audible)] ’’one can do whatever one wants to’’ [I said] ((turning the upper part of her body towards Catherine, leaning against her and maintaining eye contact during the whole utterance. At the same time she pats Catherine on the arm with a slow and dramatic gesture, timing the bodily contact so as to further underline the word ‘‘whatever’’)) that’s true ((nodding)) yes and then one does not give up until one is there ((marking the beginning of the line with two downward strokes with her fist and the stressed word in the end of it with a short nod accompanied by eye contact)) ¼no and one is about to do it ((raising her loosely clenched hands so as to underline the stressed part maintaining eye contact during the whole utterance)) ¼yes
Martha starts by establishing eye contact with Catherine (Line 1a) and in that way stresses the importance of what will come. She then alters her voice and quotes herself from many years ago delivering the evaluation: ‘one can do whatever one wants to’ (Lines 1, 2, 4). Simultaneously she keeps eye contact and shifts her body towards Catherine patting her arm, in that way stressing the importance of what she says. Martha then continues (Lines 7, 8) adding downwards strokes with her fist and head nodding. Martha uses her body to accomplish many things at the same time. First, she establishes an interpretative frame by using her body. She stresses that something is important by shifting body position and leaning towards Catherine while seeking and holding eye contact. Her patting Catherine on her arm emphasizes the importance of what Martha is saying. The rhythmic patting of the arm as well as the closing and opening of her hand is perfectly coordinated with her verbal utterances. She emphasizes the importance of the word ‘whatever’ (Lines 4, 4a), the words ‘one is there’ (Lines 7, 7a) and finally ‘one is about to do it’ (Lines 9, 9a) – words that are central to her evaluation. Further, Martha is dramatizing her evaluation by enacting verbally and bodily what she said many years ago. She quotes herself thus making her utterance present in the storytelling situation – she is the person who uttered these words many years ago. Catherine’s responses (Lines 3, 5, 8, 10) support Martha’s evaluation as well as confirm that Catherine has understood what Martha is saying.
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Martha’s evaluation is well organized on account of her use of non-verbal, bodily resources (eyes, voice, bodily position, gestures) that belong to the ‘here-and-now’ of the speech situation, although they referred to events in the ‘storyworld.’ Her performance of the evaluation is enacted and embodied in the gestures, body positions and in the qualities of Martha’s voice. It seems likely that Martha makes use of recounted, embodied experiences related to her performance of the story evaluation. Whether these embodied experiences are ‘original’ or are a result of previous performances of the same story part, we don’t know. They nevertheless add a further layer of embodiment to Martha’s storytelling.
Conclusions Viewing narratives as primarily ‘texts’ risks introducing limitations in understanding storytelling amongst persons with AD. Instead, treating storytelling and listening as a collaborative and embodied activity facilitates going beyond the ‘narrative text’ to the enactment and performance of the story. In conclusion I would like to stress four issues in particular. First, storytellers with AD – like most other storytellers – are best seen as creative problem solvers: when they encounter or face some kind of difficulty in telling their story, they try to find a practical solution, like a shift towards more feasible semiotic means (from spoken words to gestures for instance). This puts a demand on the listener – and the researcher – to be equally creative and generous, as Frank (2004) has pointed out in his discussion about the need for renewal of generosity in medicine and care. Second, problems with using spoken language may prompt the use of non-vocal semiotic resources – like gestures and bodily movements – to supplement, repair or even substitute for spoken words in a narrative. When gestures or bodily movements play a more prominent role or even substitute for words there will be a tendency towards an enactment of story rather than a re-telling (that is, a movement from what is called diegesis in contrast to mimesis in traditional narrative theory; see Herman, 2009, for a discussion). Third, another possibility for the storyteller is to strategically shift between different narrative frames (Young, 1987). Words, gestures and other bodily semiotic means may refer to or mimic events in the storyworld and hence attempt to engage the listener in these events. Facing problems with, for instance discursive constructions, it is possible for the storyteller to rather let words and the embodied semiotic means be part of comments or evaluations of the story in the storytelling situation, thus aiming at effecting the relation between the participants. In other words, a possibility is to stress the relationship between the participants in the storytelling situation, rather than to attempt to construct the events in the storyworld. Finally, the fact that conversational storytelling is a multimodal event needs to be reflected in the methodological and analytic strategies used by social scientists when working with narrative analysis involving persons with dementia. One way to do this is to use video recording and analysis as a standard methodology when researching narrative activities involving persons with dementia. It is only by acknowledging that storytelling sometimes may be less about the story as a text, and much more about sustaining a relationship with other participants and using all available semiotic resources, that we will be able to become better listeners to the stories told by persons with dementia.
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Medved, M. (2007). Remembering without a past: Individuals with anterograde memory impairment talk about their lives. Psychology, Health & Medicine, 12, 603–616. Mills, M. A. (1997). Narrative identity and dementia: A study of emotion and narrative in older people with dementia. Ageing and Society, 17, 673–698. Molyneaux, V. J., Butchard, S., Simpson, J., & Murray, C. (2012). The co-construction of couplehood in dementia. Dementia, 11, 483–502. Morris, R., & Becker, J. (Eds.) (2004). Cognitive neuropsychology of Alzheimer’s disease (2nd ed.). Oxford, UK: Oxford University Press. Nelson, K., & Fivush, R. (2004). The emergence of autobiographical memory: A social cultural developmental theory. Psychological Review, 111, 486–511. Ochs, E., & Capps, L. (2001). Living narrative. Creating lives in everyday storytelling. Cambridge, MA: Harvard University Press. O¨rulv, L., & Hyde´n, L. C. (2006). Confabulation: Sense-making, self-making and world-making in dementia. Discourse Studies, 8, 647–673. Phinney, A. (2002). Fluctuating awareness and the breakdown of the illness narrative in dementia. Dementia, 1, 329–344. Small, J. A., Geldart, K., & Gutman, G. (2000). Communication between individuals with dementia and their caregivers during activities of daily living. American Journal of Alzheimer’s Disease and Other Dementias, 15, 291–302. Stewart, K. A. (2009). How do i remember you? A narrative of memory, loss, and Alzheimer’s disease. Qualitative Inquiry, 15, 201–213. Surr, C. A. (2006). Preservation of self in people with dementia living in residential care: A sociobiographical approach. Social Science and Medicine, 62, 1720–1730. Vikstro¨m, S., Josephsson, S., Stigsdotter-Neely, A., & Nyga˚rd, L. (2008). Engagement in activities: Experiences of persons with dementia and their caregiving spouses. Dementia: The International Journal of Social Research and Practice, 7, 251–270. Westius, A., Andersson, L., & Kallenberg, K. (2009). View of life in persons with dementia. Dementia, 8, 481–499. Young, K. (1987). Taleworlds and storyrealms. The phenomenology of narrative. Dordrecht, Netherlands: Martinius Nijhoff Publishers. Young, K. (1997). Presence in the flesh: The body in medicine. Cambridge, MA: Harvard University Press.
Author’s Biography Lars-Christer Hyde´n received his PhD in Psychology from the Stockholm University, Sweden. His current position is as full professor of Social Psychology at Linko¨ping University, Sweden, and as director of Center for Dementia Research (CEDER). His research primarily concerns how people with Alzheimer’s disease and their significant others interact and use language – especially narrative – as a way to sustain and negotiate identity and a sense of self.
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Storytelling in dementia: Embodiment as a resource
Dementia 12(3) 359–367 ! The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1471301213476290 dem.sagepub.com
Lars-Christer Hyde´n Linko¨ping University, Sweden
Abstract In narrative research about persons with dementia, much research focuses on individual storytellers and their stories often stressing the discursive or textual aspects of stories. As persons with Alzheimer’s disease generally have difficulties in telling stories according to often implicit narrative norms, they may appear to be less competent and agentive than what is actually the case. In the article, I argue for a change of focus from the textual aspects of narratives and the story as a product, to a focus on performative aspects and the embodied aspects of storytelling. A focus on the storytelling activity implies a change from the individual storyteller to the interaction with other participants in the storytelling situation. Drawing on two particular cases of storytelling, I stress the collaborative and embodied aspects of storytelling and argue that embodiment is less an individual expressive phenomenon than it is an interactive resource. Keywords dementia, embodiment, narrative, performance, storytelling
Alzheimer’s disease (AD) is a degenerative disorder of the brain that primarily results in cognitive deficits and losses. Among the most prominent and early symptoms are selective deficits in especially episodic memory, attention and executive functions – although other symptom presentations may occur (Hodges, 2006; Morris & Becker, 2004). These symptoms are often followed by other cognitive impairments in semantic memory, and also increasing linguistic deficits like anomia and, later on, simplified and stereotyped utterances and repetition (Macoir & Turgeon, 2005). These impairments have consequences for persons with AD making participation in everyday activities more complicated (Giovannetti, Libon, Buxbaum, & Schwartz, 2002; Vikstro¨m, Josephsson, Stigsdotter-Neely, & Nyga˚rd, 2008). Storytelling can be viewed as central to everyday activities in which people engage and one of the most important means we have for sharing experiences and negotiating identities Corresponding author: Lars-Christer Hyde´n, Center for Dementia Research (CEDER), Linko¨ping University, 581 82 Linko¨ping, Sweden. Email: [email protected]
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(Heath, 1983; Ochs & Capps, 2001). Storytelling is also a very complex social, cognitive and linguistic activity that means that persons with AD will have problems telling and understanding stories (Small, Geldart, & Gutman, 2000). In narrative research about persons with dementia, much research focuses on individual storytellers and their stories (see for instance Alema´n & Helfrich, 2010; Angus & Bowen, 2011; Beard, Knauss, & Moyer, 2009; Crisp, 1995; Malthouse, 2011; Mills, 1997; Phinney, 2002; Stewart, 2009; Surr, 2006; Westius, Andersson, & Kallenberg, 2009). This research often stresses the discursive or textual aspects of stories like coherence. As persons with AD generally will have increasing difficulties in telling stories because of the implicit narrative norms, they may appear to be less competent and agentive than what is actually the case. One way to deal with the risk of not understanding what persons with dementia are expressing in storytelling, I suggest, is to change the focus from the textual aspects of narratives – the story as a product – to performative aspects, that is, the actual telling of stories in conversations in order to attend to the embodied aspects of storytelling (Hubbard, Cook, Tester, & Downs, 2002; Hyde´n & O¨rulv, 2009). A focus on storytelling also implies a shift from the decontextualized individual storyteller to his/her interaction with other participants in the storytelling situation (see for instance Davies, 2011; Davies & Gregory, 2007; Hyde´n, 2011; Molyneaux, Butchard, Simpson, & Murray, 2012). Stressing the collaborative aspects of storytelling as well as the embodied aspects further shifts the focus of embodiment as an individual expressive phenomenon to the ways in which it serves as an interactive resource (Young, 1997). In the following, I would like to briefly discuss an approach to storytelling involving persons with AD that emphasizes both the collaborative aspects of storytelling as well as the importance of embodiment as an interactive resource. Such an approach opens possibilities for social scientists as well as clinicians and relatives for understanding people with dementia as storytellers by shifting away from a primarily textual focus to include also embodiment and enactment.
Embodiment, narrative and storytelling Although the concept embodiment may mean different things (for an overview of embodiment in the narrative field, see Hyde´n, 2013), there are two aspects of embodiment that are of particular interest here. First, individuals who participate in conversational storytelling are physically present to each other. This implies that they can use their bodies as communicative resources because bodies are visible ‘objects’ to which it is possible to ascribe meaning (Goodwin, 2000a; Kendon, 1990). Conversational storytelling is in that respect embodied. Second, modern cognitive neuroscientists, as well as phenomenological philosophers, have argued that experience and various kinds of knowledge are modally embodied (Gallagher, 2005; Gibbs, 2006). In telling autobiographical stories this implies that we make use of embodied experiences like visual perception as well as motor actions, both when we tell stories and when we listen to stories (Bolens, 2012; Nelson & Fivush, 2004). Autobiographical memories are thus modally embodied and bodily enacted through the telling (Gibbs, 2006; Kontos, 2004). This view of embodiment and storytelling has certain consequences for understanding storytelling in AD. When cognitive functions like planning, remembering, as well as linguistic abilities used in storytelling become impaired, the person with dementia can use other resources in combination with still fully functional abilities. Instead of gestures
Downloaded from dem.sagepub.com at The University of Iowa Libraries on June 5, 2015
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accompanying words in a story, gestures can take the lead role with words only stressing or supporting bodily gestures, or gestures may even replace words entirely. This implies that the verbal narrating of an event may be partially or totally substituted by the bodily enactment of the event. This adaptive compensation entails a restructuring both of the relationship between the teller’s various cognitive and semiotic resources used in storytelling as well as between the participants in the storytelling situation, (cf. Goodwin, 2000b). That is, as the person’s ability to communicate linguistically declines, he/she may resort to other semiotic resources using his/her body to physically enact and perform memories of past events, as well as making use of the conversational partners’ semiotic and cognitive resources (Hyde´n, 2011; Medved, 2007). I turn now to two examples from two of my own research projects in order to further illustrate and elaborate these ideas. The first example is from an interview study involving couples, and the second from an ethnographic fieldwork study at a residential care unit for persons with dementia.
Sharing a bodily memory The first example is from an interview with two persons that have been married for almost 50 years – Linda and Oswald (pseudonyms). Oswald has mid-stage AD and has severe problems with both finding words and constructing complete utterances. The interview is part of a larger ongoing research project involving joint interviews with ten couples where one spouse has AD (for more information about the study, see Hyde´n, 2011). The aim of the project is to understand the strategies couples use to deal with the consequences of AD – in particular linguistic and cognitive (especially memory) loss – when telling joint stories about shared experiences. The interviews involve several narrative tasks; the couples are, for example, requested to tell stories about their shared life. The study is longitudinal with interviews conducted once a year as long as possible with the couples. The interviews are video-recorded to facilitate analysis of the interaction between the spouses. Hence, the focus is on collaborative storytelling and remembering, rather than on the stories themselves (Hyde´n, 2011). In the first interview the couples are invited to jointly share the history of their relationship: when they met, married, had children, etc. Although Oswald had severe problems finding words and constructing utterances, he and Linda succeeded to cover a great deal of their joint life history in the interview. They did this mainly by Linda ‘scaffolding’ the storytelling, which involved such strategies as asking clarifying questions in a format that Oswald could follow, and presenting possible interpretations of Oswald’s utterances (for a more detailed explication of the concept scaffolding, see Hyde´n, 2011). In that way it becomes possible for Oswald to continue as an active partner in the storytelling. At some points in the interview, Oswald had severe difficulties finding words for communicating events he appeared to remember. As a result he had to restructure the relationship between spoken language and other bodily resources. Instead of relying primarily on words, he had to use gestures in order to get Linda to understand what he was referring to, with words assuming a more general indicative function. In this process it also became evident that Oswald’s memories were embodied memories of an event – and it appeared that Linda was also able to recount this embodied memory. One such occasion was when Oswald initiated a small story about a sailing event (Example 1). In this example Oswald not only makes use of gestures to outline parts of this event, but he is also
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successful in bringing forth a memory based on embodied motor experiences of sailing which then prompts further comments by both himself and Linda. Example 1
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33
Oswald:
Linda: Oswald: Linda: Oswald:
Linda:
Oswald: Linda: Oswald: Linda: Oswald: Linda: Oswald:
I remember when we were at at the cape we were going to ttt turn o yes and that it was good Mmm we had a one that we went like so ((makes gestures with his hands outlining the turns of the boat)) and then down right so ((makes gestures with his hands outlining the turns)) and then that one out so ((makes gestures with his hands outlining the turns)) it went okay Yes thanks to the kids who knew more than we did Linda she knows she knows a lot well no I’m not good at sea things yes you are at least you know some things I didn’t know anything about the boat wasn’t interested but I you were very clever with the boat yes I was aaaa I aaa it was yes
In Lines 1–4 Oswald presents an ‘abstract’ of the story: having to get around a cape. Linda confirms that she also remembers this event (Line 5). Then Oswald continues to talk about what they actually did (Lines 6–17). He clearly has word-finding issues when describing the event; he starts, but then cannot find the word he apparently is searching for, but continues nonetheless. When he could not find the word he was searching for, he relied upon gestures to enact and thus describe the event (Lines 12, 14, 16). On Line 17 he evaluates the story events by saying ‘it went okay.’
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His gestures describe the different turns they made with their sailboat. Further, the gestures are made against a background of an imagined map space: there is an up and down, left and right, but also the specific geography of the land they had to round. What is enacted is the trajectory of the boat’s and crew’s movements seen against the visual properties of the sea and land (‘we went’) – events in the ‘storyworld’. This indicates that Oswald is using an embodied memory of the experiences from the sailing event rather than referring to an abstract non-modal representation of the event. It appeared Linda was able to remember the same event based on Oswald’s enactment (Lines 5, 8, 18), thus indicating that they both are referring to a shared embodied experience. From the ensuing exchange in the example, it is also evident that the couple uses this story in order to affirm and demonstrate their relationship and affection for each other (Lines 19–33) and in this way also to show and assert their shared identity as a couple.
‘Storyworld’ and ‘here-and-now’ As the disease progresses, persons with AD will increasingly have problems constructing a verbal narrative discourse that connects various specific events together into a coherent story; that is, to communicate ‘the storyworld’ (Herman, 2009; Young, 1987). In spite of this, many persons with dementia will often keep their pragmatic abilities related to the ‘here-and-now’ world of the storytelling activity, even until very late in the disease process (Macoir & Turgeon, 2005). That is, they are still good at sustaining the relationship between the participants in the storytelling situation. This introduces another possibility for dealing with loss, namely by shifting emphasis from the discursive storyworld to the social functions of the story enhancing the relations between the participants and using bodily resources like touch, eye contact, etc. In a second study, video recording took place during 5 months at a residential care unit in Sweden serving eight residents, seven of whom were diagnosed with some form of dementia, mostly of the Alzheimer’s type (for further details see O¨rulv & Hyde´n, 2006; Hyde´n & O¨rulv, 2009, 2010). Two women – Martha and Catherine (pseudonyms) – were often engaged in storytelling. Both women were diagnosed with AD; Martha is quite fluent verbally, but has severe cognitive impairment, while Catherine is less fluent verbally having word-finding problems and also has severe cognitive impairments. During an observation they were videotaped sitting and conversing for some 30 minutes on a bench waiting for lunch to be served. During this time period Martha told a story about getting a driver’s license. The story was organized around several sub-themes such as deciding to get a driver’s license, learning to drive, and buying a car. In a conversation, ideally these sub-themes form a part of a temporally progressing story with some events happening first, and then giving place for succeeding events. When Martha tells her story, this higher order temporal organization of the narrative is problematic and even missing; the temporal relation between the sub-themes is broken up and the sub-themes are told without any internal temporal organization. Further, some sub-themes are repeated without Martha or Catherine noting it or expressing any concern about the repetition. Martha’s rendering of the sub-themes of the story, in contrast, is generally well organized, and in most cases ends with an evaluation of the events. The evaluation is of special interest because in all these instances, its interactional organization has a similar structure where Catherine is drawn in together with Martha, the teller, in appreciating the point of the story as it is enacted bodily.
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In the following excerpt Martha is referring to having bought a car herself in spite of her husband not believing she would be able to learn to drive. The telling about this specific event ends with the evaluation found in Example 2. Example 2
1a 1 2 3 4 4a
5 5a 6 7 7a
Martha:
Catherine: Martha:
Catherine: Martha:
8 9 9a
Catherine: Martha:
10
Catherine:
((seeking eye contact)) ’’oh ss sure I can’’ I said [‘‘one can’’] [(not audible)] ’’one can do whatever one wants to’’ [I said] ((turning the upper part of her body towards Catherine, leaning against her and maintaining eye contact during the whole utterance. At the same time she pats Catherine on the arm with a slow and dramatic gesture, timing the bodily contact so as to further underline the word ‘‘whatever’’)) that’s true ((nodding)) yes and then one does not give up until one is there ((marking the beginning of the line with two downward strokes with her fist and the stressed word in the end of it with a short nod accompanied by eye contact)) ¼no and one is about to do it ((raising her loosely clenched hands so as to underline the stressed part maintaining eye contact during the whole utterance)) ¼yes
Martha starts by establishing eye contact with Catherine (Line 1a) and in that way stresses the importance of what will come. She then alters her voice and quotes herself from many years ago delivering the evaluation: ‘one can do whatever one wants to’ (Lines 1, 2, 4). Simultaneously she keeps eye contact and shifts her body towards Catherine patting her arm, in that way stressing the importance of what she says. Martha then continues (Lines 7, 8) adding downwards strokes with her fist and head nodding. Martha uses her body to accomplish many things at the same time. First, she establishes an interpretative frame by using her body. She stresses that something is important by shifting body position and leaning towards Catherine while seeking and holding eye contact. Her patting Catherine on her arm emphasizes the importance of what Martha is saying. The rhythmic patting of the arm as well as the closing and opening of her hand is perfectly coordinated with her verbal utterances. She emphasizes the importance of the word ‘whatever’ (Lines 4, 4a), the words ‘one is there’ (Lines 7, 7a) and finally ‘one is about to do it’ (Lines 9, 9a) – words that are central to her evaluation. Further, Martha is dramatizing her evaluation by enacting verbally and bodily what she said many years ago. She quotes herself thus making her utterance present in the storytelling situation – she is the person who uttered these words many years ago. Catherine’s responses (Lines 3, 5, 8, 10) support Martha’s evaluation as well as confirm that Catherine has understood what Martha is saying.
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Martha’s evaluation is well organized on account of her use of non-verbal, bodily resources (eyes, voice, bodily position, gestures) that belong to the ‘here-and-now’ of the speech situation, although they referred to events in the ‘storyworld.’ Her performance of the evaluation is enacted and embodied in the gestures, body positions and in the qualities of Martha’s voice. It seems likely that Martha makes use of recounted, embodied experiences related to her performance of the story evaluation. Whether these embodied experiences are ‘original’ or are a result of previous performances of the same story part, we don’t know. They nevertheless add a further layer of embodiment to Martha’s storytelling.
Conclusions Viewing narratives as primarily ‘texts’ risks introducing limitations in understanding storytelling amongst persons with AD. Instead, treating storytelling and listening as a collaborative and embodied activity facilitates going beyond the ‘narrative text’ to the enactment and performance of the story. In conclusion I would like to stress four issues in particular. First, storytellers with AD – like most other storytellers – are best seen as creative problem solvers: when they encounter or face some kind of difficulty in telling their story, they try to find a practical solution, like a shift towards more feasible semiotic means (from spoken words to gestures for instance). This puts a demand on the listener – and the researcher – to be equally creative and generous, as Frank (2004) has pointed out in his discussion about the need for renewal of generosity in medicine and care. Second, problems with using spoken language may prompt the use of non-vocal semiotic resources – like gestures and bodily movements – to supplement, repair or even substitute for spoken words in a narrative. When gestures or bodily movements play a more prominent role or even substitute for words there will be a tendency towards an enactment of story rather than a re-telling (that is, a movement from what is called diegesis in contrast to mimesis in traditional narrative theory; see Herman, 2009, for a discussion). Third, another possibility for the storyteller is to strategically shift between different narrative frames (Young, 1987). Words, gestures and other bodily semiotic means may refer to or mimic events in the storyworld and hence attempt to engage the listener in these events. Facing problems with, for instance discursive constructions, it is possible for the storyteller to rather let words and the embodied semiotic means be part of comments or evaluations of the story in the storytelling situation, thus aiming at effecting the relation between the participants. In other words, a possibility is to stress the relationship between the participants in the storytelling situation, rather than to attempt to construct the events in the storyworld. Finally, the fact that conversational storytelling is a multimodal event needs to be reflected in the methodological and analytic strategies used by social scientists when working with narrative analysis involving persons with dementia. One way to do this is to use video recording and analysis as a standard methodology when researching narrative activities involving persons with dementia. It is only by acknowledging that storytelling sometimes may be less about the story as a text, and much more about sustaining a relationship with other participants and using all available semiotic resources, that we will be able to become better listeners to the stories told by persons with dementia.
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Author’s Biography Lars-Christer Hyde´n received his PhD in Psychology from the Stockholm University, Sweden. His current position is as full professor of Social Psychology at Linko¨ping University, Sweden, and as director of Center for Dementia Research (CEDER). His research primarily concerns how people with Alzheimer’s disease and their significant others interact and use language – especially narrative – as a way to sustain and negotiate identity and a sense of self.
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