This chapter takes an anthropological perspective to examine how different modes of communication play a crucial role in caregiving for a person with Alzheimer's disease (AD) in the context of modern-day China and to rethink the predominant perception of AD as a condition of degeneration, loss, and disability. This chapter is based on 10 weeks of ethnographic fieldwork research in Beijing, including 13 interviews with clinicians and family caregivers, as well as observational data gathered in diverse therapeutic settings. Putting into question the common impulse to listen primarily for the semantic qualities of speech, the authors argue that alternative and experimental forms of communication make possible a different interactive space between people with AD and their caregivers. This research proposes the notion of play as a particular mode of communication that can enact new and transformative practices of care and, as a result, reconfigure and reaffirm relationships of care.
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The problem is that my father is deaf in one ear. My mother wants to talk—she’s always enjoyed talking—but he can’t hear her, so she stopped talking. She just gave up trying to speak to him. Then, she stopped going out, in case she’d wander and get lost, and her interactions with the outside world and her relationships with other people diminished. I think once that happened, she lost her ability to express herself. I think that’s part of the reason why she developed dementia. She used to be so healthy, and she would talk all the time, to everyone. But now, when I speak to her on the phone and she can’t respond, I just tell her, ‘When you were young, you were so active, so now that you’re older, your brain needs to rest.’ I tell her that, and she understands. —Mr. Wu, whose 83-year-old mother was diagnosed with Alzheimer’s disease in 2012
This chapter takes an anthropological perspective to examine how interpersonal interaction and different modes of communication play a crucial role in caregiving for a person with Alzheimer’s disease (AD) in the context of modern-day China. With attention to the current directions in Chinese gerontology, geriatric psychiatry, and health policy for elderly care, it can be argued that attention to particular ways of verbal and non-verbal communication make possible new forms of caregiving at the level of individual experience. This chapter is based on original, ethnographic research conducted over 10 weeks between July and September 2013 in Beijing at an academic institute of mental health and its affiliated teaching hospital. Drawing upon the literature in medical anthropology and a phenomenological approach to its analysis, this chapter explores the notion of play as a mode of therapeutic and meaningful communication that has the potential to be integrated into everyday caregiving practices and to transform intersubjective experiences of AD and relationships of care.
Ethnographic vignettes are presented in this chapter in order to provide insight into the everyday, interactive dynamics between people with AD and their caregivers, by attending not only to specific words exchanged between them, but also to the ways that these communicative exchanges take place. Because AD can affect the person’s capacity for language and speech, verbal communication may become increasingly difficult, and it is not uncommon for communication to cease altogether, which can lead to deleterious health effects for the person with AD. This chapter proposes alternative ways of speaking and listening that abandon the expectations for conventional, semantic associations with spoken language, and instead, engage with people with AD on their own terms. Rather than correcting or dismissing their speech because it does not “make logical sense,” conforming to what is typically expected of language, alternative modes of communication can incorporate playfulness, humor, and creativity into the caregiving relationship. By giving rise to new and meaningful forms of interaction, the practice of play can help to make people with AD feel heard, engaged with, and cared for, ultimately creating a lasting, positive impact on their interpersonal relationships.
This chapter is divided into three sections. The first gives a general overview of research methodology used in ethnographic fieldwork, including the approach taken by a phenomenological orientation to medical anthropology. It then details the methods used by the authors in carrying out their research, with a particular emphasis on the practice of participant observation. The second part provides background into AD and elderly care in China. It examines current attitudes toward issues of aging and geriatric psychiatric care in contemporary Chinese society, illustrated, for example, by the ongoing debate among clinicians, families of people with AD, and the general public over accurate nomenclature for “dementia” (the umbrella term under which AD is subsumed). Amidst what anthropologist Yan (2011) calls the “changing moral landscape” (p. 36) in China regarding issues of elderly care, this research points to the importance of communication as a sustained practice of care. The final section of the chapter takes up this concern with meaningful communication and consists of three ethnographic vignettes that trace the diverse ways in which play can unfold as a distinct and experimental form of communicative care. Each vignette, which takes place in a particular setting of care, is interwoven with theoretical reflections and analyses that draw upon the social science literature on aging, dementia, care, and play.