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Carescopes: On Caring, Looking at and Becoming

A Case of Positive Dementia Portrayals in a Dementia Respite Center, North Italy
Barbara Pieta

Abstracts

In this paper, I focus on those images of dementia (care) which have been, or might be, deemed overtly positive, because they tend to marginalize suffering, decline and compassion fatigue. I argue for the notion of carescope, a heuristic tool which on one hand allows me to see caring and seeing as related to each other and which on the other brings to center stage the situated, relational, performative and sensorial aspects of images and care. Rather than conceptualizing images as mere representations offered to us to contemplate, I draw on my ethnographic fieldwork in a dementia respite center in North Italy to explore what images are in the localized context of care, what they do and what the image-makers and viewers do with them.

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Introduction

  • 1 Here I take the “dementia” on its emic terms, not as an analytical category. As with any other soci (...)

1Anthropologists tend to point out that overtly positive images of dementia1 may contribute to the further marginalization of people living with this condition. As Leibing notes, overtly positive images of caregiving risk transforming some more painful aspects of life with dementia into something that becomes even more terrifying than it already is and risk characterizing dementia as something that only the family (and not, e.g., the community or state) should be tasked with (Leibing 2018). To illustrate her point, Leibing mentions photos of carers smiling at the camera that are posted on social networks alongside stories of the complete dedication of these carers to those living with dementia for whom they are caring, e.g., grandparents. These stories, as Leibing notes, make no mention of bodily substances or of behaviors that might be considered unpleasant or disturbing, or of moments where no response or contact is received from the person with dementia despite the efforts of the carers to interact with them. This concern is also echoed in the analysis by Jessica Robbins of the 1995 White House Conference on Aging (WHCoA) final report. There, as Robbins observes, the images which portray almost exclusively older adults with no visible disability symbolically deprive less healthy individuals, including those living with Alzheimer’s, of the status of citizen (Robbins 2008).

  • 2 Nonetheless, this call to “bring the hardship back in” is even more powerful when Azoulay’s reminde (...)
  • 3 All names in this article are pseudonyms. I have also anonymized these aspects of the ethnographic (...)

2I have long been aware of these critical voices and I resoundingly agree with their arguments, even if the call to “bring the hardship back in” seems ironic in light of Sontag’s seminal thesis on the de-sensitizing effects of images that represent other people’s suffering (Sontag 2003).2 And yet, when the time came during my own fieldwork in a dementia respite center in North Italy to turn video footage I had produced into a finished product presentable to the local community (mainly as a thank you gift), I ended up meticulously editing out the footage that had recorded moments of irritation, confusion, lack of contact and disorientation exhibited by some individuals who frequented the center. After a prolonged period of ethnographic fieldwork, I had become more aware of the sensitivities of the respite center community, which made me want to cut out those fragments of the video that might pose a risk to the dementia center’s public image or could cause discomfort to people watching the film (such as individuals with dementia who frequent the center or their family members). The same applied to my filming strategies earlier on: I turned the camera off in moments of tension, even when I had general permission to film and had not received any hints or indication that I should stop filming. In effect, in the video I produced the dementia respite center emerges as a space of solidarity and affect that is set against a wider context of collapsing local social ties – this latter a result both of stigmatizing attitudes towards dementia and of a gradual decline of local community life. The main protagonist of the video was Giovanna3, an 80-year-old woman diagnosed with a type of mild dementia who became the main participant of my visual project. I spent dozens of hours filming her both at home and in the center, where she was surrounded by the center’s community. I also made sure to involve Giovanna’s family and the respite center staff and inserted those moments of their daily comings-and-goings that demonstrated the efficiency of their caring efforts. The unresolved problems, disputes, and compassion fatigue that I also encountered did not make their way onto this video. I also avoided filming certain organized activities like bingo, which some people enjoyed but which were commonly considered, especially by the outsiders, as infantilizing.

3No one forced me to make these editing choices. However, my fieldwork diaries from this period of filming and editing abound in notes to myself in which I railed about how frustrated, embarrassed, and concerned I was about the distorted and fragmented portrayals that I was about to produce. I was particularly worried about the moral status of these portrayals: they indeed elegantly swept some parts of life with dementia under the carpet. On the other hand, I also felt that this is how I should – and how I wanted – to edit this material; after all, I knew the respite center was already the object of the hostile gaze of those in the town who stigmatized both it and life with dementia in general, associating both with horrors taken to be the permanent companions of cognitive decline. Against this backdrop, I thought, the center “deserved” an alternative, perhaps more motivating in gaze and in representation. This concern with the opinion of the center’s onlookers was quite likely influenced by my experiences at home in Poland. While I have never been involved in eldercare as a primary caregiver, I did observe my parents taking care of my beloved grandfather in the final years of his life. At times, my parents wondered if they might be judged as bad carers by people from outside the household who might witness moments of family tension and especially my grandfather’s frustration with the children who provided for him. I also remember my grandfather’s preoccupation with hiding his walking stick from potential observers, considering it to be an embarrassing sign of the vulnerability of his own body. In retrospect, I think that the attitudes that I observed at home made me particularly sensitive to and fascinated by the role of appearances in shaping care relations.

4When in the field, it was not until several months had passed that I started to consider my filming choices, and the contradictory feelings linked to them, as film politics (or, more broadly, as visual politics). The filming was my way of gaining the trust and appreciation of the individuals frequenting the respite center and of their families and the center managers. These were strategic camera negotiations, an impression management strategy that is constitutive of every fieldwork (Berreman 2012). After all, as Lallier noted, the researcher is observed by the same people she is seeking to observe (Lallier 2015). However, filming and editing was not only an effort to either tiptoe around or embrace the voiced or tacit/assumed expectations of people that I had filmed. It was also a very messy process of trying to understand what was required of me as a filmmaker (and a researcher) so that my looking at and filming individuals with dementia could be experienced by them (and those around) as an act of care. It is precisely this – situated, embodied, relational and performative – connection between looking at and care itself that I want to explore in this paper. In the next section, I will highlight some of the complexities that come to the fore when contemplating seeing as care.

Carescopes: Exploring the Entanglements of Looking and Care

  • 4 In this interview for Visual Culture, Martin Jay argues to move beyond the debates about reifying p (...)
  • 5 I coined this term, taking as a model a similar concept, ethnoscope proposed by Bruce ‘Pacho’ Lane, (...)
  • 6 For a discussion of the anthropological corpus of work on care and images, please see Pieta (2021, (...)

5To some extent, my interrogation of various entwinements of looking and care echoes Martin Jay’s call to move beyond our conceptualization of vision as a controlling surveillance (Jay 2002). In a 2002 interview, Jay pointed to the French word “le regard” as well as to the “non-dominating and benign” gaze of Buddha, symbolic of the way looking is practiced in Buddhism, as two examples that should prompt us to “probe the ways in which the sense of ‘looking after’ someone is just as much a possibility as ‘looking at’ them’”.4 In contrast to Jay, and drawing on the ethnographic material presented below, I do not exclude the possibility of gaze as control but rather argue for the need to consider various local understandings of care (including its uncanny relations with power) and how these shape visual practices. To better untangle the different tensions related to care understood as visual engagement, I propose the term carescope5, by which I mean a heuristic device that allows us to analyze local historically-specific visual practices as care. The ‘scope’ in this term is important because the focus here is on visual aspects of care, still too rarely explored in anthropological literature6, even though other senses, e.g., touch, sound and thermoception, have increasingly been the focus of attention in care literature (R. L. Cohen 2011; Throop 2012; Peterson 2016; Douglas 2021). When referring to vision or seeing I mean visual engagement that is not limited to our interactions with visual material artefacts. As some authors note, the imaginary is visual too (Elkins 1997; Ingold 2010). While I do, in fact, engage with anthropological accounts that focus merely on representational qualities of the images, I do so primarily to support the argument about performativity of images (Didi-Huberman 2003; Edwards 2006; Ingold 2010; Favero 2021). Moreover, in focusing on vision, I do not want to suggest that this is separated from or is prior to other senses. Instead, as the stories in this paper will demonstrate, sight is deeply embedded in multi-sensory experience (Howes 1991; Ingold 2000; Grasseni 2009; Pink 2015). Rather, my choice in this paper to focus predominantly on the role of vision stems from a desire to critically engage with previous anthropological writing on (positive) images.

6The term ‘care’ of the carescope also requires clarification. It is commonplace (including in some visual anthropological writing) to associate care mainly with an affective disposition and a propensity to be aware of need. In contrast, in my analysis I will mainly draw on the wider Fisher and Tronto’s definition of care as practice, in which care is construed as:

“a species activity that includes everything we do to maintain, continue, and repair our ‘world’ so that we can live in it as well as possible. That world includes our bodies, our selves, and our environment, all of which we seek to interweave in a complex, life-sustaining web” (Fisher and Tronto 1990 cf. Tronto 1993: 103).

7This definition is better suited to capturing the tensions and conundrums that my camera negotiations in the respite center entailed. Firstly, it extends care beyond the family and domestic spheres, allowing for different activities to be interrogated as care (military service is care too, as is a laundry service). It also allows for a move beyond the normative framework, making space for the possibility that care can also bring harmful effects, or rather that good and bad are part of the same assemblages (Leibing and Lemos Dekker 2019). Thus defined, care is also marked by moments that Cheryl Mattingly called ‘moral experimentations’, i.e., ‘efforts at discerning a momentary best good’ in the context of unavoidable suffering and uncertainty (Mattingly 2014: 33). These efforts involve not only personal reflection but also practical action aimed at transforming social and physical spaces. For Mattingly, caring for an intimate other often requires ‘transformative efforts to imagine not only what will happen, but also what ought to happen or how one ought to respond not only to difficulties and suffering but also to unexpected possibilities’ (Mattingly 20014: 280). Care thus engenders moral experiments and is as much a mundane affair as it is a matter of imagination. Even if these ‘efforts to imagine’ might not bring about long-lasting effects, they nevertheless constitute occasions to re-visit familiar perspectives and modes of doing things. They lead to what Mattingly calls ‘moments in possible lives’ (Mattingly 2014: 34), or opportunities to enact a moral self that one aspires to. The stories of visual engagement that I will present here will mostly highlight the experimental character of care, illuminating what I will call carescopic experiments, or creative efforts to find the best way of looking at the person cared for or who, more broadly, matters to us. Despite their improvisational qualities, these experiments are always situated. They are shaped, at least to some extent, by what I will call carescopic regimes, or local normative assumptions about what type of gaze constitutes an act of good care.

8Tronto and Fisher proposed understanding care as a four-staged process, in ideal terms involving: caring about (i.e., noticing unmet caring needs), caring for (taking responsibility for making sure that someone’s needs are met), caregiving (carrying out the actual care-giving practices) and care-receiving (making judgements about the sufficiency of help received) (Tronto and Fisher 1990 cf. Tronto 2013). As Tronto and Fisher argue, identifying these diverse phases of caring complicates our understanding of what “good caring” is. For example, the practice of caring for one’s own aged parents requires different types of competences and creates ethical challenges other than those involved in caring for someone’s else parents as a staff member in a long-term care facility. Consequently, conflict is also an intrinsic feature of care: there are conflicts of interests, priorities, and moralities and tensions about who gets to interpret the needs. As I will suggest in the concluding remarks, each type of care also requires (in idealized terms) different types of gaze, and thus each is characterized by different types of carescopic regimes and experimentations.

9Overall, my argument is that acknowledging the situated and performative character of images, as well as the messy character of care, makes us better positioned to understand what was at stake when I – and, as I will demonstrate, other people in my field site – sought to create positive portrayals of dementia.

Camera in the Field

10The filming was part of my fieldwork in a town in North Italy, intended to explore how families who live with dementia craft their understandings of autonomy and care in the context of rapid population ageing, of the neoliberalization of the welfare state, and of a circulating rhetoric about family and personhood promoted by medical experts on dementia (see also Pieta 2020). Over the past number of decades, Italy’s earlier models of care have undergone dramatic transformations: firstly, the entrance of women to the paid labor market, as well as the gradual disappearance of the previously dominant model of multigenerational households, created a new reality in which a kinship group could no longer suffice as the only care-provider. Subsequently, the Italian state’s neoliberal policies as well as the emergence of global tendencies to fetishize independence at old age (Lamb 2017) have given rise to a state-level rhetoric that promotes as more noble the individualistic approach to personhood and care (Muehlebach 2012, Pieta, forthcoming). In effect, this country, which has the highest longevity rates and old-age dependency ratio in Europe, has had to reinvent itself while coping with changing models of family, demography, biomedicalization and, related to this, increasing dementia rates. One of the responses to this transformational crisis has been the emergence of eldercare social services (nursing homes, daycare and respite centers) which have become associated with abandonment and the stigma of institutionalization. In this context, Italy has been faced with two increasingly pressing challenges: to combat the stigma attached to their services and to give an efficient response to the extremely fast-growing number of families who – due to a lack of available family carers – seek support outside the kinship network. These transformations both re-configure and are shaped by local expectations and practices of kin care provisions (Minelli and Redini 2015; Pieta 2020; Diodati 2021).

11The post-industrial town (population 45,000) in the region of Veneto where I did my fieldwork offered several community services to their aged residents, some of which became crucial for my ethnographic fieldwork projects. During the 24 months of fieldwork, I followed various social spaces occupied by older adults of the town. Apart from households and bars (the traditional sites where elderly people would come together, in a gender-separated context), I regularly visited (eventually bringing my camera along with me) the already-mentioned dementia respite center, which was open for a few hours a day, two days per week, and was frequented by people living with mild forms of dementia.

12After five months visiting the center, I proposed to the coordinator (and subsequently to everyone else involved) that I make a film with one of the individuals who frequented the center.

13Because this was my first filming experience, I spent some part of my rather generous PhD grant on hiring a local professional filmmaker who showed me some basic filming techniques and tutored me as I struggled with several of my filming decisions. I later became more independent and with time I was asked to film pieces for the benefit of the community, e.g., to publicize the center or for archival purposes. My photos were also used to promote the center at some local public events. Clearly enthusiastic about my video project, the center’s managers involved me in preparing a video piece that would serve their anti-stigma social campaign, where my role was first to provide my own video footage and subsequently to collaborate with the aforementioned professional filmmaker to create and edit more video material to suit the managers’ vision. Consistent with Zamorano and Vailati’s thesis about the ethnographic relevance of on-demand and home/family videos, all these collaborations – training with the filmmaker, filming at various events (often commissioned by the respite center managers) and preparing the campaign video piece – were an opportunity to see how the production and circulation of media recreate and enact local imaginaries, including aspirational moral selves (Vailati and Zamorano Villarreal 2021).

  • 7 I used Nikon D5200 to film in the field.

14The presence of the camera significantly transformed my relationships in the field. Not only did my role become clearer, to the extent that some people began to call me fotografa (‘the photographer’7), but I became perceived as a useful contributor to the center’s community. As MacDougall predicted (MacDougall 1979), the work of a camera operator is much more comprehensible to ethnographic collaborators than the work of an anthropologist. Moreover, in the eyes of the managers and people frequenting the center, the presence of my camera gave status to the center, the implications of which I will explore in the section below. Importantly, in this project my camera was not, as it had been in MacDougall’s case, an extension of the camera operator’s body, almost always with him/her in the field (MacDougall 2005). Rather, there were several occasions when I decided not to take the camera to meetings with the research participants, or to film only for a short period of time. These negotiations of the presence and the working of the camera were central, because they helped to explore various dimensions of the local carescopic regimes.

  • 8 Following Vailati and Zamorano, I see on-demand films as ‘a space of collaboration and self-represe (...)

15As Lallier observed, the camera can define fieldwork relations in a variety of ways, some of which do not necessarily lead to ethnographic film as a final product (Lallier 2015). This was also the case of my project. Although some of the footage I did turn into a shareable short film (the aforementioned thank-you gift), this product still registered – for me and others – as a mixture of ‘home-movie mode’ and on-demand (amateur) video, radically different from any stand-alone ethnographic work (MacDougall 1969).8 Most importantly, as was the case in the Lereshe’s, Garcia’s and Poupins’ projects (Leresche 2015; Teresa 2015; Poupin 2015), of interest for this study was the sole act of filming (or refraining from filming), as well as the bond that emerged between me and the community thanks to the situated presence of the camera as a ‘relational device’ (Leresche 2015:18, my translation), as well as images as ‘relational objects’ (Edwards 2006:27). To some extent, this departure from the ethnographic film format was due to my limited audiovisual skills as well as a lack of familiarity with visual ethnographic methods. But the other reason was equally important: this being my concern about what I could film and show, and why – a conundrum that remained unsolved throughout the entirety of my fieldwork.

  • 9 In this paper I do not offer an in-depth analysis of how legal and institutional ethics oversight h (...)

16This concern was further complicated by my desire to protect the dementia center from eventual political consequences that particular readings of my critique might trigger in the highly politicized and competitive world of associations, where continuity of funding depends on the outcome of municipal and governmental audits.9 This is why, in this paper I have refrained from presenting images from the respite center, not even including any from the video segment that the center produced for the general public.

The Setting

17I started this paper with the discussion of my own visual engagement with life with dementia, by describing the filming project in the local respite center. Needless to say, my ‘looking at’ was hardly the only, let alone the most prominent, gaze directed at individuals affected by this condition. Moreover, my gaze and that of individuals described in this section were both shaping and being shaped by other images of dementia circulating locally. In this section, I discuss the visual material culture of social spaces occupied by the town’s aged residents. I will also highlight emic debates about seeing and representing dementia and ageing in general.

18The respite center where I filmed is run by a dementia patient association, which brings together individuals living with the disease, their families and dementia medical experts. The association is part of another broader collective and it competes for funding with several other associations that offer services to the aged. The respite center was also recently the subject of political attention, since the municipality (one the main financial sponsors of the center) presented the center as its own successful initiative, in what they promote as a progressive agenda to introduce person-centered care (cura centrata sulla persona) to local care facilities. The volunteers working in the dementia center, as well as the families who use the center’s services, are all extremely important figures through whom the center managers can demonstrate the center’s usefulness and that it is deserving of public funds. Despite the efforts of the management to implement changes that are believed to be progressive and despite, too, the appreciation of several families, in the town where it is located the respite center continued to be associated both with a stigmatized, debilitating and horrifying disease (dementia) and with types of activities that are classified by outsiders as infantilizing (bingo, drawing, crosswords). The identity of the center as a space of “dementia” meant that the center was automatically associated with terror.

  • 10 For examples of these posters or their variants, see online editions of Italian newspapers: Redazio (...)

19In these identity-making politics, visuals play a crucial role. The director of the respite center would always roll his eyes when mentioning the images that, according to him, dominated representations of dementia in various media circuits, including brochures, posters, internet pages – images such as human-head-shaped trees gradually losing their leaves.10 This particular image, hammering home the idea of cognitive decline with which dementia is popularly associated, has been widely used on posters advertising dementia-related seminars. It represents the old way of approaching dementia in the public discourse, including in the discourse of medical experts. This type of representation (and its different variants) has an even more harmful predecessor: invisibility, the status of being non-showable/unpresentable, i.e., as was the attitude in the past to people living with dementia, hiding them at home and erasing them from the sphere of the presentable. Stories about the non-presentability or “craziness” of people with dementia circulate locally even today and they are always presented by activists as harmful behaviors rooted in a backward past. In this context, the respite center sees its mission not only as improving the conditions of life of those with dementia but through that also making of Italy a country that achieves what they perceive as European standards for the understanding of late life and cognitive decline (Pieta, forthcoming).

20Although the center drew on a range of scholarship/methodologies, it could broadly be described as belonging to what Leibing called the “personhood movement” (Leibing 2006), a major trend in social gerontology typically associated with Tom Kitwood and highly critical of the widespread dehumanizing perception of people with dementia. To these extremely harmful imagery (“empty shells”, “vegetables”), the personhood movement has offered an alternative: a model of person-centered care (Kitwood 1997), which recognizes the human being with his or her individual desires and stories. Kitwood insisted that what is most important was not what has been lost but what desires and capacities are “still there”.

  • 11 Laughter yoga is one of the “body and mind wellness” techniques in which laughter is simulated in t (...)
  • 12 Developed by Moyra Jones, this technique teaches caregivers how to gain a better understanding of t (...)

21Kitwood’s quotes were on posters in the center managers’ room and his name was sometimes brought up in the conversations I had with the management. In the respite center, a melding of several techniques and methodologies (e.g., laughter yoga11 and gentlecare12) was employed in service of the person-centered care and, with the same aim, volunteers during training were reminded to address center users with their professional titles (e.g., professor), where appropriate and applicable.

22In the dementia respite center, there are no photos of the people who frequent the center. Concern with privacy issues does not allow it. Instead, the walls of the respite center are covered with paper decorations made by people with dementia who frequent the center. These decorations, made during occupational therapy workshops, are in the popular imagination (or for critical outsiders) the symbol of the debilitation that both dementia and the places like respite center epitomize. The typical pejorative comment I would hear about the respite center from people in the town (even from those who had never visited the center) was that respite center was a place where “they make you engage in “paper activities” (lavoretti)”. The respite center, of course, does not want to be associated with this visual culture of their space and therefore in their public communications (such as brochures and the video campaign piece) they are very careful when selecting visual cues to communicate their mission. In this context, my camera was another opportunity to create a positive profile of the respite center’s activities and as such fitted into the narrative of the center managers and that of the local politicians of the respite center as an innovative project offering person-centered care. The center exists independent of the camera, but it was the camera that was constitutive of the center’s status as the site of this innovative project.

Care as Training the Eye and the Ear

23Not long after I had begun my fieldwork, I was invited for pizza by members of an association that promoted, as they wrote in their mission statement, an innovative approach to dementia care. The association belonged to a wider, overlapping network to which a number of people from the dementia respite center also belonged. The pizza was served at home of a family of which a member, 85-year-old Paolo, was living with advanced stages of Alzheimer’s. This family was part of the association, as were the other families in attendance. As well as the families and the individuals living with dementia, also present at the party was the president of the association. This was 50-year-old Irene, who also had a role of trainer facilitating workshops for families interested in the “method” promoted by the association: laughter yoga, massages, gentle care, person-centered approaches, etc. At the end of the evening, when some attendees, including myself, were already gently affected by the mixture of beer and digestivo, the host Elena, the wife of Paolo, put on some music and her husband started dancing with one of the guests, Agnese, who was also living with advanced stages of dementia and who that evening was accompanied by her daughter Sara. Both Sara and Elena smiled and started bouncing to the music. While visibly enjoying the dance, their attention was also on the dancing of Paolo and Agnese, sometimes evident through their gentle gestures as they tried to prevent the couple from hitting the sharp edges of the table. Suddenly, Paolo stopped dancing and started to laugh very intensely and Agnese responded with a similar type of laughter which very soon transformed into singing and screaming at high frequency and decibel levels. It was the first time I had witnessed such a scene (although I was to witness many more in the next months of fieldwork). It certainly made an impression on me. However, I did not know how to define this impression, let alone what to do with it and how to express it to those around me. I did initially appreciate the delight emanating from the dancers, but I then started to struggle to decipher whether Agnese’s tones were still ludic expressions of joy or were uncontrolled screams of panic, a consequence of hallucination (as the biomedical discourse would have it) or an expression of emotions that I could not immediately name and embrace. In that moment I thought that a wise thing to do would be to try to understand what others also witnessing this scene were doing. Very conveniently, Irene, the president of the association, standing next to me, said in a voice loud enough for me to hear her clearly despite the hubbub around: “What a wonderful voice she has, look! This is so powerful! What a couple! And what a dance!” At that moment, Paolo’s wife, shouted “yoga risata, dai, tutti!” (laughter yoga, c’mon everybody!”) and started laughing, using her arms to invite everyone else to join in, as we did.

24I would argue that Irene’s comment was not only an expression of her own (genuine) awe but was also a hint that she was giving to us regarding where to direct our senses when observing and listening to this performance. She acted, as Jay would have it, as a virtuoso, ‘opening up new worlds to our eyes’ (and ears) (Jay 2002: 88), thus showing ‘moments in possible lives’ (Mattingly 2014:15). Irene offered us cues on how to listen to and look at dementia in a proper way. Notably, sound was crucial in guiding our attunement, interweaving with the vision to form the experience (Ingold 2000).

  • 13 In his subsequent article, Cohen juxtaposes his interlocutors’ way of listening to the older person (...)

25Irene’s remarks were part of the process which Cristina Grasseni called ‘apprenticeship in skilled vision’ (or senses in general), a social training through which one learns how to look (or listen, touch, smell etc.) in the right way; i.e., how to pick selected traits and ignore others to achieve the desired effect (Grasseni 2004). In this case, Irene helped me to ‘develop an eye and an ear’ to engage with dementia in a new way. One could argue that by insisting on directing attention to the beauty of the voice and the dance and by leaving unaddressed other aspects of the observed scene, Irene was reproducing the trend of overtly positive representations of which so many scholars are critical. However, stopping here would be to miss what this insistence, this channeling of the gaze, as well as of auditory attention, meant to the people involved. By offering tips on how to train my own eye and ear, Irene tried to show me how to address the situation of the person with dementia in the best possible way, i.e. how to do one of the possible “best goods” (Mattingly 2014). As Mattingly noted, the imaginary, the dramatic, the cinematographic is sometimes crucial in offering a new vantage point to the familiar way of seeing, and in crafting desired moral selves (Mattingly 2014:141-149). As the example above demonstrates, skilling the senses is necessary for participation in a meaningful way in this transformation. By guiding our sensory attunement, Irene transformed the narrative of decline into the narrative of dancing bodies and ceaselessly powerful voices. In consequence, we, the people at the pizza party, are transformed from passive witnesses of what Mattingly called moral tragedy (in which in face of decline there is no possible way to thrive as a good carer) to those crafting a memorable experience through the embodied appreciation of the voice and the dancing scene. In this context, learning how to look upon and listen to dementia in an ‘appropriate’ way (and to engage our bodies in dance) emerges as care and as a space of moral thriving – as a finding of our way to be the carers that we want to become. Notably, the voice in this story is ontologically different from the voice in Cohen’s seminal book ‘No aging in India’ (Cohen 1998). For Irene, the voice of Paolo was something she could engage with and thus also co-create, turning a scream into a song thanks to her skilled discerning of the sounds. Conversely, for Cohen’s interlocutors, the voice seemed to be an object “out there” the potential index of an older person’s “hot brain” or “bad family”, and therefore always requiring careful examination (Cohen 1998)13.

26Basing on her fieldwork in Chicago among older adults and their paid care workers, Elana Buch suggests that imagining and re-creating sensory worlds of the persons cared-for allows the care workers to sustain independent personhood of their elderly clients, especially when the latter’s ability to manifest their will diminished due to physical decline (Buch 2013). However, as Buch argues, this sensory attunement simultaneously reinforces bodily hierarchies between the care workers and those that they care for, because it naturalizes the carers’ exploitation of their own bodies. Building on Buch’s observation, I acknowledge that skilling the vision (and other senses) as a form of embodied empathy may also rely on, and reinforce, social inequalities (see also Grasseni 2004). However, my case points to another aspect of sensory attunement, namely its ability to generate, for individuals with dementia, their caregivers and the ethnographer, what Mattes and Lang called an embodied experience of belonging (Mattes and Lang 2021): This results from the skilled channeling of the senses, where new subjectivities and a sensorially mediated bodily reciprocity emerge, thus engendering new ways of being together.

Imagining as Care and Becoming

27The claim by anthropologists about the harmful effects of what are deemed to be (overtly) positive portrayals of dementia, reflected in my own initial concerns, is underpinned by a particular understanding of the relationship between images and reality. Specifically, there is an assumption that the world exists ontologically prior to the image, with the individuals who interact with the image conceived of as consumers with little agency. The argument proposed by Leibing, which I mentioned at the beginning of this paper, is useful for fleshing out these assumptions. Leibing recounts the story of Fernando, who posts pictures that tell the story of his grandmother, pictures that show him smiling – happy against the odds. Fernando has a smile on his face even after “giving up everything” to provide what Leibing calls ‘total care’ for his grandmother (Leibing 2018:2). Leibing appreciates the good intention behind these images but is also critical of them, warning that they do not adequately address the hardships of dementia care, thus downplaying the need for state and community involvement. Leibing is, I believe, right about the harmful effects of these overtly positive, ‘exclusively joyful’ (Leibing 2018:6) images. Hers is politically a very important argument. However, it is also to some extent limiting. What Leibing seems to imply is that images are intended to be representations of reality (in this case, of life with dementia), and the audience then consume these images as reality. A similar assumption seems to underlie the study by Kessler and Schwender (2012), which Leibing cite and in which the relation between the viewer and the image is imagined a priori to be an act of consumption (the viewers – respondents – were asked to offer feedback to particular images – objects). As some anthropologists have argued, such conceptualization of images as “decoys (given us) to contemplate’ (Henry c.f. Ingold 2010) is, at least to some extent, problematic. As Favero put it: “images do so much more than portraying and documenting. They do things to us, interact with us, guide us, merge with us; they are literally part of our bodies and life-worlds (2018: 113)”.

28In a similar vein, Tim Ingold puts it well when he writes:

“Perhaps it is the very notion of the image that has to be rethought, away from the idea that images represent, on another plane, the forms of things in the world to the idea that they are place-holders for these things, which travellers watch out for, and from which they take their direction. Could it be that images do not stand for things, but rather help you find them? (…) Should the drawing or painting be understood as a final image to be inspected and interpreted, as is conventional in studies of visual culture, or should we rather think of it as a node in a matrix of trails to be followed by observant eyes?” (Ingold 2010:16)

29I would argue that Ingold’s proposition is particularly useful in making sense of the cues Irene offered to me during the pizza party. By showing us how to attune our senses, Irene sought to evoke an imagery that could help in our moral positioning. She did not claim that what she was directing our senses to represented Paolo or dementia itself. Rather, she wanted to offer a place-holder through which I could sense what is going on around me (and Paolo) at that moment in space, and thus also re-imagine what doing good might mean in this context. Irene did propose a model for dementia. However, rather than being a descriptive model (of the phenomenal world), it was a prescriptive one (for the phenomenal world) (Carruthers, cf. Ingold 2010). In this example, consistent with Ingold’s proposal, the images proposed by others ‘do not stand for things, but rather help you find them’. As Florensky proposed, rather than attempting to represent or narrate, the images are here to transform and contemplate (c.f. Favero 2021:12). It is through these attempts that images can help, as they did during the pizza party, navigate what Favero calls the ‘ghostly terrain’ between life and death, light and darkness, presence and absence (Favero 2021:97).

Images as Care, Performance, and National Becoming

30Images can be easily conceptualized as place-holders in a situation like the one described above, i.e. where no fixed outer image is involved but rather an imaginary is evoked thanks to someone else offering guidance to our senses. However, as it has been argued elsewhere, the same holds true for visual material artefacts (Edwards 2006; Strassler 2010; Favero 2021; Larcher 2021). I will introduce another story to demonstrate how this performative and transformative character of images is crucial for national identity-making, and for re-imaging good dementia care simultaneously.

31Ten months after I left the field-site, the management of the respite center released a video that they had commissioned the local filmmaker. The video was sponsored by the municipality and was produced both to combat the stigma attached locally to dementia and – related to this – to help recruit volunteers for the respite center.

32“Even when the darkness appears all-consuming” the voice-over says in the video’s initial scene (in which the whole screen is black) - “there is always a light that will shine through. The light of those who see you. In a place where it is not the memories that matter but being together, with kindness, in this moment.” Zoom out and we see that the black screen was a close-up of a white-haired woman’s eye. We can now see that the woman is surrounded by a group of individuals, poised in a geometrically harmonious composition (with Botticelli clearly hinted at) at of one of the city’s landmarks – a beautiful 19-century park – engaged in activities evoking harmonious community life: painting, reading, dancing and playing guitar. We do not know which of these people have dementia, but all, except one, are behaving in a cooperative and visibly satisfied way. Most of the people shown are middle-aged, although there is also a group of young women among the dancers (the center’s volunteers participated as performers in the video). The word dementia is not used in the video clip; it appears only at the very end, in the credits when it is communicated that the video was made with sponsorship from a dementia patient association. In fact, most of the people with whom I watched the video did not realize that the video was about dementia.

33Arguably, the video ticked all the boxes of an overtly positive portrayal of dementia. The idyllic pictures conceal aspects that, as anthropologists such as Leibing, suggest, should ‘remain part of the picture’ so that the membership of people with dementia into society can be accomplished. This video does not evoke the feeling of loss and decline that can sometimes mark life with dementia. However, to insist on denouncing this video as a discriminatory portrayal would be to miss out on what these selective depictions mean and how they are experienced locally. Specifically, it would be to ignore what the images are, what they do and what the audience does with them. In attempt to answer these questions, I will take a step back and discuss the context within which this particular video was produced.

  • 14 The video was made during the pandemic, after I left my fieldwork site, so I could not directly obs (...)

34Even though the video was ultimately produced by another filmmaker, it was initially a joint commission to myself and the local professional filmmaker whom I had previously hired to coach me during my filming in the respite center. This cooperative project turned out to be a contentious process (the filmmaker did not seem to like the prospect of working with someone else), as a result of which both myself and the filmmaker had to withdraw from the project. Nonetheless, the initial discussions in which I participated allowed me to engage with the managers’ way of thinking about this video.14

35In a conversation in the center management office, the filmmaker and I were asked to produce a video four minutes long with, as the managers suggested, ‘people at the center’. The final video product was intended to show what individuals with dementia gain by frequenting the dementia respite center. This was to be done by showing how the center promotes positive relations, self-acceptance, autonomy and environmental mastery – all four being components of a classic psychological model of well-being (e.g., Ryff 1989). Without being asked or prompted, the managers admitted that the center did not fully live up to the theoretical model. For instance, to date not enough attention has been invested in increasing the “environmental mastery” of the persons frequenting the center: there are no “biscuits” labels to help the individuals to find and take a cookie whenever they might like, and persons with dementia are not informed about the facilities that are in the center’s vicinity. “We know it on their behalf but it is they who should know it”, lamented one of the managers. ‘Because they (people with dementia) are the true proprietors of the center (padroni di casa)”.

36The professional filmmaker was not sure how these confessions could help us make a video about what one gains by frequenting the center. She raised a concern that we were being asked to show in the video a reality that did not exist. The managers categorically refuted such a suggestion and rushed to clarify their intentions. They were not interested in turning the video into a paean about the efficiency of the respite center, they asserted. Neither were they interested in hiding the uncomfortable truth. What she wanted was a video that shows what the center should be, what it aspired to be.

37I was rather puzzled, quite struck that the managers had decided to formulate the goals of the center in a way that for me registered as an ableist agenda. Not sure whether to interject, I was rescued by the filmmaker who seemed at this point to finally get what we were expected to do. She suggested that, in the film, we could show individuals with dementia, actively engaged in various activities outside their domestic space. According to the filmmaker, this could help us challenge the stigmatizing beliefs which assume that all people who live with dementia get confused in new environments. ‘This could help us convey the message’ (her formulation, my emphasis); the filmmaker’s proposal was now met with the managers’ assent.

38Since the managers (and the filmmaker) did not want to engage in ‘marketing’, then what else was at stake for them with these positive portrayals? Indeed, it would be easy to assume that they simply wanted to present the respite center in the best possible way. It would be equally easy to state that they were naively subscribing to neoliberal and ableist assumptions about personhood and care. However, both propositions would be difficult to sustain in light of other ethnographic data: such as, in other contexts, e.g., during public meetings or meetings of family support groups, the respite center managers acknowledge and addresse dependence and the challenges that care in a respite center presents. Thus, something other than downplaying hardships, or a will to deceive, must be at play. Moreover, and equally importantly, the final video was met with enthusiasm and appreciation not only by the general public but also by the volunteers of the center and families using the center services, who were touched by the video. Even though some recognized that the slightly-too-rosy portrayal did not match the realities of the respite center, not to mention their own experience as caregivers, they did find the video beautiful (bello or even bellissimo) and thought it ‘gave the right message’. No other post on the center’s Facebook site has ever been shared as widely as this video piece has been. Several people commented on how proud they were of having family or friends who work as volunteers in the center.

39If people in other spaces acknowledge the hardships of care but do not address these aspects when creating an image of care, then this prompts the question of what – in the context of care – renders an image different from, e.g., a community town hall meeting or a self-support group, where hardships and decline are often brought center stage? I argue that it is useful here to make a comparison with mappa mundi, understood as prescriptive model of the world (Ingold 2010). Just like the images proposed by the managers, the mappa mundi is not a result of precise measurement and documentation. Rather, paraphrasing Ingold, it is a window to revelation. Similarly, the video is not a document but a signpost directing our senses and attention to ‘what could be’. Not a mirror of the present but a ‘beacon for the future’ (Kandinsky, paraphrased in Favero 2021: 95). The video is also a ‘relational object’: not only is it a result of social relations (a material testimony that the center exists), but also it forges new subjectivities, and evokes new stories (Edwards 2006:27). This was evident not only in the pride and enthusiasm with which the volunteers circulated the video to highlight their role in this initiative but also in the conversations that this video provoked. The volunteers and friends with whom I watched this video posed questions about generative aspects of illness and about the way the community should or should not provide care.

40This link between the video and national becoming was brought home to me a few days after the aforementioned conversation with the center managers took place. I eventually decided to confess to him that I was worried that the decision to downplay, in the video, the care-related challenges might result in some discriminatory effects. The managers strongly disagreed: ‘In Italy we already have a lot of horrific images of dementia circulating everywhere!’ This insistence was revelatory. As in previous examples, it represents a radical break from the Barthesian understanding of an image that portrays something that “has been”. Instead, for the center managers the video is, as Strassler had it, ‘carefully staged theatre-space for the projection of possible selves’ (Strassler 2010, p.79). In this enactment, the collected aspirational subjectivity is interwoven with imagery of national modernity. Also indicative was the insistence that the ‘darker’ side of dementia should not be shown. This pointed to the existence of the local carescopic regimes. For the center management, to care about means not showing those aspects that might feed into horrifying dementia imaginary.

Bella Figura: Care and Regimes of (In)visibility

41One day in the center Marta, a volunteer and one of my best friends there, visibly irritated, took me aside. A few hours earlier, another volunteer, who she considered not cut out for the role, had brought one of the center users to tears. Eraldo had been trying to leave the building and the volunteer pulled his arm “a little bit too much” when trying to convince him to re-enter. Worse still, this scene was observed by Eraldo’s family who at that same moment had arrived to pick him up.

42‘What an ugly impression we have made' (‘che brutta figura abbiamo fatto’), lamented Marta, bringing to my attention what Nardini called the central metaphor of Italian social life, namely, fare bella figura. Literally, ‘to make a beautiful figure’ this metaphor nevertheless is not about showing off or about a will to deceive (Nardini 1999). Rather, to cite Piktin it is, ‘a kind of displacement of interior self to the exterior, where it becomes constructed as a social fact. One is for the purpose of social discourse what one is perceived to be’ (c.f. Nardini 1999.). A carefully crafted presentation of self, to paraphrase Nardini, bella figura is both about civility and beauty. It is about managing impressions but also about strategic use of aesthetics and gestures to evoke positive emotions and thus stay well together.

43I posit that caring can also be strongly anchored in the logic of bella figura. The imperative to ‘make a beautiful figure’ was of concern not only for Marta but also for some other individuals in the stories I have discussed in this paper, including in the case of my own filming. That a proper display of public self can be crucial not only for upholding one’s reputation but also for ‘staying well together’ was especially evident during my filming in Giovanna’s household. Always present during my filming in Giovanna’s home, Giovanna’s family was quite uncomfortable witnessing her frequent complaining in front of the camera about profound loneliness. ‘Because we do spend time with her’, her daughter insisted as we talked about the collected footage. As family care is strongly moralized in Italy (Reher 1998; Pieta and Diodati 2023) it is easy to see how my filming could endanger their reputation as good children and carers. Indeed, one volunteer, who lived next door and who insisted that Giovanna received a lot of filial attention, was worried that my film might do a disservice to the family. Against this backdrop, despite my initial idea of directing my camera exclusively at Giovanna, I also made sure to film her family members. At later stages, I noticed that Giovanna, especially during the filmed interviews, started to make clear distinctions between her children, whom she called devoted carers, and now a more abstract “young generation” with “no time for anything”. Despite tensions and occasional conflicts between Giovanna and the daughter or daughter-in-law, the family was careful to maintain a united front whenever I, or my camera, was around.

44Apart from this particular issue, neither Giovanna nor her family seemed interested in participating in filming decisions. Thus, I decided to film, and often stage, scenes that to me seemed to best evoke the aspirational selves that Giovanna and her family sought to present when I was present. Just as is the case of ‘home commissioned movies’ (Larcher 2021), my filming become an extension of the gaze of the family who agreed to be filmed. At the same time, I also embodied the watchful eye of the future audience, and because of that I was not allowed to watch, let alone to film, everything. As already anticipated in the introduction to this paper, the (recorded or observed) moments of irritation, anger and anxiety were not presented in the film. I argue that this (ethnographic) way of seeing was also an act of care. In this case, attending to the family and Giovanna’s needs meant enacting – through particular filmed portrayals – their desired selves, thus not only honoring their efforts and affectivities but also confirming their moral status in the community (Pieta and Diodati 2023).

Dementia, Image and the Sensoriality of Both

45When viewing the film, Giovanna’s family seemed genuinely touched by the portrayals that emerged, especially by the framing of Giovanna as longing for her beloved late husband. Giovanna was mostly surprised by the number of wrinkles she could see on her face, now displayed on a large tv screen.

46She had no memory of the recording of some of the scenes. At the end of my fieldwork, we watched the film together (her family, one of the center managers and me), after a dinner she had prepared for us at her place. In this context at least, she found her memory gaps amusing. ‘Is that my kitchen? I remember nothing of that!’. These memory gaps did not have an impact on her as much as the fact that we were all here together, watching the film and happy to listen to and contribute to multiple stories of her late husband Sisto, who featured in the video through the filming of family photographs. While the film may have placed Giovanna’s loneliness center stage, this evening relegated it – at least a bit and momentarily – to the margins. This viewing definitely helped bring us even closer together and it also was an occasion for the center’s manager to move beyond what up till then have been purely formal contact with Giovanna. The tears, chatters and emotions that we shared while watching the video were strong testimony to the ability of images to initiate and influence social relations (Smith 2003:11). Clearly, viewing these images was not only a visual decoding of semiotic codes but also a profoundly sensorial and affective experience. Giovanna’s memory gaps further complicate the relation between images, self and the past. As Edwards suggests, photographs as material objects are a form of ‘extended personhood’, because they connect people through space and time (Edwards 2006: 6). In Giovanna’s case, this connection is also between her current self and that which she has forgotten, thus complicating, and expanding her connection to her body at this moment in space.

47Watching the fieldwork footage I realized how much of my recording in the center was sensory filming (Pink 2015). I had captured several minutes of footage of Giovanna bathed in sunlight. Of the flowers printed on her beautiful summer dress. Of the ticking of the clock in her living room. Of the colorful patterned surface of the bingo board upon which we often played, and the coin that Eraldo liked to set spinning on the center’s tables. From my occasional filming with Paolo (the same Paolo who featured in the earlier section on the pizza party), I have a long sequence footage of his fingers tapping – for several minutes – on the surface of the bench on which he and his wife had once rested during a trip to Salò – the material recorded during a trip we took to the same town to celebrate his birthday. The directing of my attention to surfaces, sounds and light helped me ground my senses and thoughts in an otherwise very distracting environment and in a context which at times was very emotionally demanding. It was my way of looking for beauty, lightness and joy, when I (and probably not only I) most needed it. ‘How I love these close-ups’, said one the center’s managers watching the footage, perhaps also tapping into the grounding experience the filmed surfaces offered to us. Grounding experience may become useful when one tries to manage, as Favero had it, the “ghostly terrain” (Favero 2021). The physical presence of the camera was for us also a way out of boredom, especially during some activities in the center that the center’s users (and me) found extremely tedious. ‘…Ara che siam in tv! (…look, we’re on tv)’ – laughed Eraldo, inviting Giovanna to smile to the camera.

48Now, having left my fieldwork site, when I call Giovanna every now and then, she has no recollection of me, but enjoys (as I do) the talk and exchange of jokes about the secret powers of her signature home-made liquor. I don’t know if she or her family ever rewatched the video but the bond this video-making created between us is alive still. Paolo, who danced and sang at the pizza party, passed away one year after I left. I recently watched the footage of the pizza party. The singing scene did not seem as perplexing as it originally had, which probably testifies to my apprenticeship under Irene having been successful. As for Agnese, who danced with Paolo during the pizza party, her health has significantly deteriorated. On the day of my last visit before departure, she had an anxiety attack, during which she continually called for her mother for help and comfort. Her daughter tried to calm her down by showing Agnese an old photograph of her parents. Agnese’s eyes swept across the surface of the photo but never rested on the image – a painful reminder about the materiality of images overrunning their semantic codes. Nonetheless, Agnese’s hand remained in that of her daughter’s, as she continued to ask after her mother.

Conclusions

49My purpose in this article was to highlight the importance of paying attention to those moments in which looking at becomes care. I argued that much can be gained by suspending, even if momentarily, our own convictions about how looking should be done in order to provide “good care” and about what “good care” is in the first place. By introducing the term carescope, I wanted to make space for emergent local understandings and embodied practices of care that come to the fore thanks to the sensorial, relational, and performative qualities of images. In constructing my argument, I have focused on positive dementia portrayals. However, this should not suggest that carescopic regimes, or carescopic experiments, evoke only harmonious imagery. Less positive examples have also been identified, though not dwelled on here as they fall outside my focus on positive portrayals. It is the gaze of the caregivers at the pizza party, where care entailed the constant scanning and assessing of the distance between the sharp edges of the table and the dancing bodies of the loved ones affected by dementia. To “care well” caregivers also need to acquire the skill of “good looking” (and listening, smelling and tasting), though this is not the same training as the one I received from Irene. In such cases, a carescopic regime at work does not forge the images of harmonious, joyful life. Rather, the risk, the potential harm and tragedy, is brought center stage. Yet another example of a carescopic regime is that of invisibility. This is epitomized both by the past erasure of dementia from public imagery and, also and ironically, by my own decision not to show some events recorded on the footage that I had captured. Moreover, there exist several films about dementia, death or disability that are excellent manifestations of there being no conditional link between care and what might be characterized as ‘rosy imagery’ of dementia (see also the Introduction to this Special Issue for a detailed discussion on the intermingling of care and vision [Pieta, 2021]).

50I opened this paper with an anthropological critique of positive portrayals and returned to these throughout the paper. They will also have a central place in my final remarks. Within this paper I have developed views that in certain conceptual ways diverge from the critique of positive portrayals by Leibing and others. Therefore, it is important for me to clarify that my intention here is not to dismiss this critique and undo the contribution of these scholars to the debate on dementia and social justice. Rather, their work has helped me make sense of some of the tensions I experienced during my own camera negotiations. Most importantly, theirs is a politically essential argument. That exclusively joyful images of life with dementia may erase the consciousness of the hardships of dementia from the collective imagination seems like a likely, and very unwanted, scenario, and a debate on how to prevent this occurring is an important and urgent one. However, and this is my argument here, the debate about any dementia images should be informed by a nuanced understanding of what really is going on when people create and engage with these portrayals. If images do much more than portray and document, as Favero and others suggest, then this means that there is also much more for anthropologists to do beyond signaling the potential harmful effects of a particular representation. I argue that it is in attending to the phenomenological, multisensory and agentive aspects of images that anthropology can best contribute to the discussion on looking as care, including our debates about overtly joyful images of dementia care.

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Notes

1 Here I take the “dementia” on its emic terms, not as an analytical category. As with any other social category, it deserves deconstruction. This task, however, is beyond the focus of this paper, although my argument about performative and sensorial qualities of dementia images could be considered as providing a conceptual space within which such deconstruction is possible.

2 Nonetheless, this call to “bring the hardship back in” is even more powerful when Azoulay’s reminder that images of pain and suffering are constitutive of citizenry and oblige the viewers to take (visual) political action (Azoulay 2008) is taken into consideration.

3 All names in this article are pseudonyms. I have also anonymized these aspects of the ethnographic accounts that could render the research participants recognizable locally.

4 In this interview for Visual Culture, Martin Jay argues to move beyond the debates about reifying power of the gaze, by highlighting the double meaning of the French term le regard, which means both ‘looking at’ and ‘looking after’. Another example he points to is as follows: “I remember very well a conversation I had in the mid-nineties in Berlin with the poet Allen Ginsberg about the ‘gaze of the Buddha’, in which he demonstrated for me the non-dominating, benign way in which looking takes place in that religion.” (Jay 2002:89).

5 I coined this term, taking as a model a similar concept, ethnoscope proposed by Bruce ‘Pacho’ Lane, and discussed by Antonio Pérez Zirión (Zirión 2018). In Lane’s definition, Ethnos stands for tribe, nation or culture in Greek, and skopein (as in ‘telescope’) stands for ‘to see’ or ‘look’. Carescopes can be seen as an ingredient of carescapes, that is ‘exchanges over space and across time of political and social ideas about care as well as of material changes in services and infrastructures’ (Bowlby and McKie 2019: 5).

This paper had been accepted for publication before another work which explores the connection between care and images was published by Cheryl Mattingly and Lone Grøn (Mattingly and Grøn 2022). Thus, in this paper I do not engage with the concept “imagistic care” proposed by these authors. However, I believe that the parallels and tensions emerging between this concept and the carescope offer encouragement for further explorations of the intermingling od care and vision from a comparative perspective (see also Pieta 2021, this issue).

6 For a discussion of the anthropological corpus of work on care and images, please see Pieta (2021, this issue).

7 I used Nikon D5200 to film in the field.

8 Following Vailati and Zamorano, I see on-demand films as ‘a space of collaboration and self-representation’, where fiction, artifice and montage are used to evoke and materialize desires, aspirations and ideas of the future (2021: 4). Instead, after Chalfen I understand ‘home-movie mode’ as a type of visual communication that enables ‘ordinary people’ to make certain claims about their lives (Chalfen 1987:12).

9 In this paper I do not offer an in-depth analysis of how legal and institutional ethics oversight has shaped my relations in the field. This is partly because I discussed this aspect in another paper (Pieta and Diodati 2023) but also because these frameworks, less restrictive and more context-sensitive than ethical protocols in place in other contexts (Israel and Hay 2006; McAreavey and Muir 2011; Fletcher 2021), have resulted in other factors, such as the local visual culture, and my ethical responsibility towards research participants, their families and other gatekeepers, having more impact on my decisions during and after fieldwork. I was required to obtain permission (which I did) from the dementia respite management to film and publish, as well as from individuals who were filmed or, in appropriate cases, from their proxy. All individuals frequenting the respite center were evaluated – by the center’s management – as able to give consent. Most of them did not have legal guardians.

10 For examples of these posters or their variants, see online editions of Italian newspapers: Redazione (2016), HuffPost (2018), Red.san. (2016).

11 Laughter yoga is one of the “body and mind wellness” techniques in which laughter is simulated in the form of an exercise.

12 Developed by Moyra Jones, this technique teaches caregivers how to gain a better understanding of the mood of the person with dementia, by paying close attention to various expressive forms, e.g., verbal language, gestures or emotions (Jones 1999).

13 In his subsequent article, Cohen juxtaposes his interlocutors’ way of listening to the older persons’ voice with another mode of listening - one which resists the imperative to decipher the meaning or diagnose. In this other mode, the voice of the aged person “[means to the listener] neither what it appears to say—if in a coded and provocative register suitable to pedagogy—nor the contrary to what it appears to say, but rather and simply [it means] something else”(Cohen 2003: 123).

14 The video was made during the pandemic, after I left my fieldwork site, so I could not directly observe the film-making process. Thus, my analysis here cannot account for the experience of the filmmaker, as well as the individuals who performed in front of the camera. Rather, I concentrate on what some of these individuals told me during the interviews I made online after the video was published, as well at their reactions to the video posted on the respite center’s Facebook page (and I also include the story of my initial engagement in the film). The phone/online interviews were not an adequate format to engage with the interlocutors who live with dementia. Thus, I am unable to account for their experience of and opinion on this video piece.

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References

Electronic reference

Barbara Pieta, Carescopes: On Caring, Looking at and BecomingAnthrovision [Online], 9.2 | 2021, Online since 01 December 2023, connection on 14 June 2024. URL: http://0-journals-openedition-org.catalogue.libraries.london.ac.uk/anthrovision/9299; DOI: https://0-doi-org.catalogue.libraries.london.ac.uk/10.4000/anthrovision.9299

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About the author

Barbara Pieta

Max Planck Institute for Social Anthropology

pieta@eth.mpg.de

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