Abstract
A diagnosis of dementia is devastating, not just for the patient but all close family and friends. There are concerns about loss of skill, personality, and even identity. In his book Entangled Narratives: Collaborative Storytelling and the Re-imagining of Dementia, Lars-Christer Hydén argues that it is important to know more about the ways that people adapt to the disease. He describes the book as “less about loss, and more about possibilities and the often ingenius approaches to storytelling that are found when listening—and looking—carefully at persons with dementia and their significant others engaging in storytelling” (p. 2). This book offers critical understanding of the social psychological implications of dementia as it relates to storytelling and identity.
Storytelling has long been acknowledged as a critical way in which humans share their experiences and history with others. Hydén explores the concept that storytelling is not prevented by dementia. Instead, those with dementia may still take part in their own storytelling with the participation of their friends and family. This co-communication helps the person with dementia sustain their personhood, and also helps strengthen bonds of family and friends. The book explores this concept, not only for family and friends but also professionals, to help them “re-imagine their patients and loved ones as collaborative meaning-makers.”
The author’s interest in the relationship between narratives and those with dementia developed over a period of nearly 15 years, as he became interested “in how people use language in social interactions” (p. vii). As a young psychologist in the 1970s, Hydén had heard many “fragmented and entangled stories” in the large geriatric hospital wards he worked in. His book explores the relationship between identity and narrative storytelling. It will appeal to two distinct audiences. The first is those with a medical background such as nursing, occupational therapy, gerontology, psychology, or dementia studies. The second is narrative scholars who are interested in the application of “narrative theory in the medical field, in this case, dementia” (p. 24). The book is organized around four main themes (dementia; story, memory, and self and identity), which are woven throughout its eight chapters. The book does not focus on the stories told by those with dementia as much as it focuses on how those with dementia join with others to tell a story.
Chapter 1, “Personhood Regained,” provides a fascinating overview of theories related to storytelling and storytellers afflicted with brain disorders. Hydén recounts that narrative researchers have concluded that those who cannottell their own autobiographical stories have lost not only their sense of self, but, indeed, their personhood. According to Bruner (2002, p. 5), “There is now evidence that if we lacked the capacity to make stories about ourselves, there would be no such thing as selfhood.” Hydén strongly disagrees with this claim, outlining the ways in which those with dementia and their family and friends support storytelling together. Much of the chapter investigates theories of self and identity, going back as far as Locke, who in his Essay on Human Understanding (1690), identified self as one who has the capability to keep memories. The sociocultural tradition as outlined by Vygotsky (1987) makes the point that people interacting linguistically have always been part of human development, not only for children but also adults as they advance cognitively, socially, and linguistically. This framework has been applied to the study of developmental processes, but it is equally useful to study the collaborative ways that people with Alzheimer’s and other dementias are supported by others to foster their communication and storytelling.
Chapter 2, “Dementia, Selves and Stories,” summarizes the research in storytelling and dementia upon which the rest of the book is built. The first focus is the idea that those with dementia are capable of and engage in storytelling. Hydén reviews evidence from dementia support group studies showing that these people tell stories, and that they can be good at this skill. Phinney (2002) argues that even when these storytellers struggle—when their story is “inherently and fundamentally unknowable and untellable”—the “meaning is in the telling itself.” Those struggles give the listener the opportunity to “bear witness to the suffering when meanings cannot be told” (p. 49).
The research also points to this type of storytelling as “entangled” (Cheston, 1996; Phinney, 2002), in which the challenges of dementia place added demands upon the storyteller. Although the quest for meaning is the purpose of all storytelling, the importance of being understood—and the difficulty in making that happen—is much higher when dementia is involved. Much research has focused on the weaknesses and shortcomings of the dementia storyteller, looking at all they can no longer do. Hydén’s review, instead, focuses on researchers who engaged in the identity function of stories and the importance of redefining what a story is and how these altered stories should be listened to when dementia is involved.
Storytelling is not an isolated act. For those with dementia, listeners are also co-weavers of the story. This assistance can come from first-hand knowledge if the partner had participated in the event being told about, or from being part of previous tellings of the story. The assistance may also come in the form of helping the storyteller find needed words or phrases to complete their telling, allowing those with dementia to still be active meaning makers even as their disease progresses.
Chapter 3, “Living with a Changing Brain,” summarizes the brain’s role in “realizing and regulating interaction with both persons and artifacts” (p. 83). The brain’s language system is “made up of basic skills like word finding, sentence construction, attention, and working memory” (p. 83). As dementia progresses, language choices decline, and people with dementia face two risks: that they will be unable to solve their own problems, or they will risk being “micromanaged” by others. Collaboration is a way to keep the person with dementia involved and not have choices imposed upon them.
Chapter 4, “Stories: Making Worlds and Selves,” examines three important concepts. The first is that conversational storytelling is cultural, coming with “implicit and embodied norms” (p. 112) of what a story is and how it should work. These societal norms include what content is appropriate for a particular type of story, as well as how “the performance should be organized” (p. 112) and what is expected in terms of storytelling. The second is that the teller often serves as a character in autobiographical stories, allowing the comparison between the teller and the character he or she has crafted for themselves within the story. Third, as has been previously mentioned, storytelling is a collaboration between the crafter and the audience—all working together to craft and receive meaning.
However, the stories told by persons with dementia often do not fit within the boundaries of what society says a story should be. Hence, the concept of “entangled stories.”
Violating these norms implies the linguistic and discursive organization of the story becomes problematic because words are missing or word choices are made that might confuse the listener; discursively the story might start in the middle of a chain of events and lack an ending. Thus the story told by the person with dementia becomes entangled in itself. (p. 113)
The entanglement is further complicated when the storyteller struggles to remember characters in the story, or their relationship to each other and to the events of the tale. What was once a simple, entertaining, and enjoyable process of sharing stories for reminiscence and entertainment can become laborious and time consuming as the listener and the teller together struggle to disentangle the details and weave an understandable story.
Chapter 5, “Collaborative Compensation: Scaffolding,” focuses on the task of providing support for the activity of storytelling. Family members and spouses of people with dementia mourn losing the ability to share stories, so it becomes incumbent on them to provide support for the activity of storytelling. Hydén refers to these activities as “scaffolding.” Scaffolding actually takes three separate forms. The first is an “activity frame,” which includes “environment and general preconditions for the activity and format, perspective, wording, topic that will increase chances for contributions from the person with dementia” (p 135). The second is actions that increase the opportunity for joint interaction, while the third is the critical stage of “repair activity,” which allows the narrative to be fixed enough to make it acceptable to at least one of the participants.
The chapter includes a narrative from a married couple, Oswald and Linda. Oswald has middle-stage dementia, which severely restricts his ability to create effective narrative. Yet Hydén refers to Oswald’s narrative as “an example of possibilities—what a person with dementia can do together with other persons, rather than what he or she cannot do” (p. 138). It is apparent in this example that Linda is performing “extensive repair work” on Oswald’s narrative. Given that they are a married couple who have lived closely together and experienced many of the same things, Linda has the tools necessary to repair Oswald’s narrative. She is also adept at building scaffolding—asking supportive questions that allow Oswald to be successful in crafting a narrative. For collaborative storytelling and scaffolding to work, the partners have two mutual obligations. The first is a commitment to the activity—their willingness to work toward shared understanding. The second is a commitment to the relationship, their longstanding history and their ability to support and understand each other.
In Chapter 6, “Embodied Memories,” Hydén takes on the notion that the brain works like a library, storing messages for later orderly access. Memory researchers have debunked this concept of memory retrieval. Schacter (1996) explained that memory is composed of a variety of distinct and dissociable processes and system. Each system depends on a particular constellation of networks in the brain that involve different neural structures, each of which plays a highly specialized role within the system. (p. 5)
Rather than one “library” of memories, many parts of the brain contribute to the creation and recall of what we think of as memories. This diversity of memory sources allows those with dementia to use fragments of information from a variety of sources to recapture memories and retell them, often by relying on nonverbal communication such as gestures and intonation.
Hydén explores the interdependent identities of spouses when one has dementia in chapter 7, “Selves and Interdependent Identities.” Shared identity is critical for cohabitating spouses. They each share parts of each other’s stories, which reflect their “shared (we-) experience” (p. 191). This process magnifies the importance of both spouses, as each is integral to their shared identity. It also magnifies the loss suffered by the healthy spouse; their storytelling capacity is diminished as their partner loses the ability to share in the telling and understanding of their autobiographical stories.
The final chapter, “Listening with a Third Ear,” returns to where the book opened—answering Jerome Bruner’s charge that if there are no memories, there are no stories, and hence, no self or identity. As such, Bruner endorses a traditional notion that autobiographical stories have one teller who both authors and owns that story. Hydén’s definition of story is far different, explaining that persons in the early and mid-stages of dementia who struggle to remember details from their lives are still able to tell their own stories. Those stories are different than what they may have previously told in terms of complexity and detail. They may have a high degree of repetition, a heavy reliance on gestures, or be confusing to the listener. But the person with dementia, sometimes with the assistance of scaffolding, is able to tell their own story, which reflects both their past and current realities.
Hydén identifies three issues surrounding storytelling that contribute to changes in the person with dementia’s identity and self. The first is that the agency of the person changes as they require more assistance in their storytelling. In joint activities—such as storytelling—their role changes from a central to a peripheral one. Second, the storyteller’s dementia means that the cognitive and semiotic resources used to craft stories are restructured. There are more gestures and repetitions, along with more fragmentation. Third, the stories shift in narrative voice. What once was an autobiographical story featuring the voice of the story teller over time becomes a story that features the storyteller as the protagonist.
These dynamics change the person with dementia’s identity and sense of self. They do not eliminate personhood or identity as Bruner suggested, or the linguistic and social nature of storytelling itself. Hydén does, however, acknowledge the limits of storytelling by persons with dementia. “As the dementia progresses, persons will have fewer and fewer linguistic and cognitive resources, and thus engaging in storytelling becomes not only difficult but also threatens to become yet another disappointment and ‘disencounter’” (p. 205). As others repeat stories featuring the once healthy person, there is risk that there will be no room for stories that reflect the person with dementia’s current realities and meet their need for expression. Despite these challenges, storytelling, even when it requires assistance, remains a highly linguistic and social process.