Emotion Work in Caregiving: Technology's Role in Dementia Care PDF

Emotion Work in Caregiving: The Role of Technology to Support Informal Caregivers of Persons Living With Dementia DIVA SMRITI, Drexel University, USA LU WANG, Drexel University, USA JINA HUH-YOO, Drexel University, USA The CSCW and HCI community has increasingly examined ways to support informal car...

Emotion Work in Caregiving: The Role of Technology to Support Informal Caregivers of Persons Living With Dementia DIVA SMRITI, Drexel University, USA LU WANG, Drexel University, USA JINA HUH-YOO, Drexel University, USA The CSCW and HCI community has increasingly examined ways to support informal caregivers through technology, given the increasing burden and its consequences on caregivers’ emotional and physical health. In this paper, we interviewed 12 informal caregivers of Persons Living With Dementia (PLWD) to understand their needs and current coping strategies for overcoming caregiving burden, specifically around emotion work. The caregivers associated different personal meanings with caregiving. Participants wanted technology to take over some of the utilitarian, mundane caregiving tasks. At the same time, they did not want technology to take over the tasks that fostered personal connections with PLWD. As the disease progressed, caregivers started to lose their perceived bond with PLWD, making it more challenging to juggle between rewarding, positive emotions with negative experiences. We discuss such complexity of emotion work using the notion of Invisible Work to understand when technology should or should not support the emotion work engaged in informal caregiving. CCS Concepts: Human-centered computing → Empirical studies in collaborative and social com- puting; Empirical studies in HCI. Additional Key Words and Phrases: Dementia; Alzheimer’s; Informal Caregivers; Family Caregivers; Emotion Work; Technology ACM Reference Format: Diva Smriti, Lu Wang, and Jina Huh-Yoo. 2024. Emotion Work in Caregiving: The Role of Technology to Support Informal Caregivers of Persons Living With Dementia. Proc. ACM Hum.-Comput. Interact. 8, CSCW1, Article 48 (April 2024), 34 pages. https://doi.org/10.1145/3637325 1 INTRODUCTION Dementia is a progressive condition without the development of medical breakthroughs to prevent, slow, or cure it. The number of Persons Living With Dementia (PLWD) in the U.S. aged 65 and older is projected to increase from 6.5 million to 13.8 million by 2060. The total cost of caring for PLWD in the U.S. is projected to reach $321 billion in 2022. One or more family members provide most of the care for PLWD, with over 11 million informal, unpaid caregivers providing an estimated 16 billion hours of care in 2021. Informal caregivers include family, friends, or other personal acquaintances of the PLWD, who tend to “live to provide care” to the PLWD. Informal caregiving is not simply an imposed duty but arises from emotional bonds with the care recipient and is usually assumed without formal Authors’ addresses: Diva Smriti, Drexel University, 3675 Market St, Philadelphia, Pennsylvania, USA, 19104, ds3659@drexel. edu; Lu Wang, Drexel University, Philadelphia, USA, [email protected]; Jina Huh-Yoo, Drexel University, Philadelphia, USA, [email protected]. Permission to make digital or hard copies of all or part of this work for personal or classroom use is granted without fee provided that copies are not made or distributed for profit or commercial advantage and that copies bear this notice and the full citation on the first page. Copyrights for components of this work owned by others than the author(s) must be honored. Abstracting with credit is permitted. To copy otherwise, or republish, to post on servers or to redistribute to lists, requires prior specific permission and/or a fee. Request permissions from [email protected]. © 2024 Copyright held by the owner/author(s). Publication rights licensed to ACM. ACM 2573-0142/2024/4-ART48 https://doi.org/10.1145/3637325 Proc. ACM Hum.-Comput. Interact., Vol. 8, No. CSCW1, Article 48. Publication date: April 2024. 48:2 Diva Smriti, Lu Wang, & Jina Huh-Yoo preparation or monetary remuneration. These caregivers are often overburdened. Caregiving burden can lead to higher levels of anxiety, depression, use of psychotropic medications, sleep problems, and chronic fatigue. Researchers have recognized such challenges of caregivers and have called for attention to supporting caregiver burden, given that much attention has been paid so far in supporting PLWD. Given the high psychological challenge of caregivers, many focused on improving the psychological outcomes of dementia caregivers, such as depression, anxiety, and strain [2, 32, 90, 93, 106] and what technology can do to off-load the burden [22, 40, 63, 75, 109]. Examples include monitoring PLWD’s whereabouts , scheduling and reminding for tasks , helping with the repetitive questioning behavior of PLWD and their deteriorating memory , and helping PLWD live independently in their homes. Recent studies report that there are also positive experiences of being a dementia caregiver [1, 17, 78]. Examples include personal growth, rewarding experiences, and an emotional connection with the care recipient that might balance out and reshape the subjective burden of the caregiver. Computer-Supported Cooperative Work (CSCW) and Human-Computer Interaction (HCI) work in caregiving has developed novel and creative solutions on how caregiving burden and negative emotional experiences can be supported [15, 55, 84, 87, 93, 109]. However, unpacking what those positive experiences of caregiving are and how they can play a role in designing technology for caregivers of PLWD are still underexplored. To address this gap, we conducted semi-structured interviews with 12 dementia informal care- givers to understand the following research questions: RQ1: What does being a caregiver mean to the informal caregivers of PLWD? RQ2: What part of caregiving do these informal caregivers (a) want technology to do for them and (b) do not want technology to do for them? RQ3: What challenges do informal caregivers face, and how do they cope with them? We found that being a caregiver was challenging but also rewarding as a caregiver of PLWD. Contrary to our assumptions where caregiving burden will be lessened if more work can be offloaded to technology, the intense emotional connection caregivers made with PLWD and the work influenced how they perceived their work should be supported by technology. However, the distress of everyone involved (PLWD, participants, and other caregivers) and the changing nature of emotions in dementia caregiving further challenged these positive experiences. The caregivers then sought help to address these emerging negative experiences to maintain and balance their positive experiences with caregiving. Our findings contribute to the fundamental shift from offloading the caregiving burden to enhancing and supporting caregivers’ work in balancing positive and negative emotions associated with caregiving, which we call emotion work. We leverage and expand on Hochschild’s emotion work concept , which has been mainly described in the contexts of paid formal work, to informal unpaid caregiving context. We show how this emotion work of the primary caregiver is often functionally invisible , can change and intensify as PLWD progress through dementia, and involves the complexities of coordinating with other caregivers. We also discuss how technology should or should not support caregivers in their emotion work. We contribute to the existing discourse in CSCW on invisible work [15, 68, 91] to articulate emotion work, and what technology should not replace, such as human connection [54, 92]. 2 BACKGROUND In this section, we first highlight a shift from a clinical to a psychosocial view of dementia, focusing on the everyday challenges of informal caregivers of PLWD. We provide an overview of how sociotechnical systems have explored supporting such challenges of informal caregivers and discuss Proc. ACM Hum.-Comput. Interact., Vol. 8, No. CSCW1, Article 48. Publication date: April 2024. Role of Technology in Emotion Work of Informal Caregivers 48:3 how literature has mostly focused on the objective caregiving burden. We expand on what subjective burden might mean in dementia caregiving through the concept of emotion work and discuss the remaining gaps in supporting the work of informal caregivers of PLWD involving complex emotions. 2.1 Everyday challenges of Informal Caregivers of PLWD Dementia brings a severe burden and suffering for patients and their families. For patients, the progression of cognitive and functional deterioration coupled with behavioral and psychological complications result in increased use of health and social services, comorbid conditions, complex coordination of clinical management of such comorbid conditions, and increased complications around delirium, falls, motor vehicle crashes, etc. For informal caregivers, the caregiving burden can lead to higher levels of anxiety, depression, use of psychotropic medications, sleep problems, and chronic fatigue. As such, dementia is a debilitating, serious health condition that puts risks to not just patients but also their caregivers. In the context of cancer, Chen et al. in 2013 redirected the CSCW community’s attention from supporting not only patients but also caregivers. Since then, the CSCW and HCI community has engaged dementia and caregiving of PLWD as an important focus in many recent studies [36, 55, 61, 93, 101, 103]. In contrast to the clinical view of dementia focused on a series of memory loss and cognitive impairments [8, 59], CSCW and HCI researchers have paid attention to the psychosocial view of dementia by understanding PLWD through their social, physical, and emotional experiences with those around them [19, 27, 44, 61, 101, 108]. Without prior training or support, informal caregivers face challenges in understanding the evolving conditions of PLWD , conducting physical and nursing care , providing supervision support of PLWD , and making decisions in coping with the comorbidity conditions of PLWD. Informal caregivers also struggle with financial costs [30, 35, 103] as well as planning for future crises [69, 104, 107]. They also face challenges in taking care of their own physical health and emotional health [18, 50, 107]. Al-Megren et al. reported how informal caregivers of PLWD shared their day-to-day experiences through #dementiacaregiver on a social media platform (TikTok ). This paper provided unique data on the self-reported experiences of caregivers. Some examples included the realities of caregiving, such as ‘the Good, the Bad, and the Ugly’, discussing both the positive and negative sides of caring. Authors reported such types of videos always concluded on an optimistic note, focusing on the honor of ‘giving back.’ In addition to working with PLWD, primary caregivers encounter challenges in coordinating multiple stakeholders, including the clinical providers, the primary caregiver, and other family and friends who provide some variations of support. Caregiving coordination involves coordinating caregiving tasks and schedules among the caregivers and dealing with conflicting perceptions among family members about what the “best” care is for the patient [85, 95]. In cultures and health domains where community plays an important role in care, such as dementia, challenges in care coordination become important as caregivers want to be recognized as more than just ancillaries in caregiving [10, 88]. To address such physical and psychosocial challenges that informal caregivers face, researchers developed multiple solutions to help these caregivers offload some of their caregiving tasks and, in turn, ease their burden. 2.2 Technology Supporting Informal Caregivers of PLWD In supporting dementia and their caregivers, CSCW, HCI, Human-Robot Interaction (HRI), and gerontology researchers largely investigated educational or psychotherapeutic interventions for Proc. ACM Hum.-Comput. Interact., Vol. 8, No. CSCW1, Article 48. Publication date: April 2024. 48:4 Diva Smriti, Lu Wang, & Jina Huh-Yoo the information and psychological needs of caregivers (e.g., mobile app for training ), assis- tive solutions (e.g., robots ) to help with physically demanding activities, and platforms for communications among caregivers (e.g., mobile app to facilitate better visits to PLWD ). To support the information needs of caregivers, researchers developed applications for early diagnosis , web-based framework for trust and information seeking [3, 51], and web-based or video-based psychoeducational interventions [7, 12, 21, 26, 31, 39, 56, 60, 66, 100]. For daily caregiving activities, sensors, camera systems, GPS Tracking systems, alarms, and exergames were explored to help with safety , monitoring [63, 90], reminders , physical caring , support for PLWD in washing hands , and activities to train PLWD for physical and cognitive abilities [102, 103]. Other major technological solutions focusing on social interactions were platforms for peer-moderated support groups and healthcare professionals’ support groups [58, 67, 99]. Bhat and Kumar discuss ‘negative spaces’ in health tracking technologies, in which certain data pertaining to health management are unaccounted for by virtue of being hard to collect, subjec- tive, or complex. They posit that these negative spaces are essential to recognize and work toward the goal of collecting diverse socio-cultural health data. Although in the context of cancer, Chen et al. cited Montgomery et al. and discussed the caregiving burden via two dimensions–objective vs. subjective burden. Objective burdens refer to “activities associated with the caring process or practical consequences of the physical and behavioral changes in the care receiver, while subjective burdens are the emotional reactions of caregivers”. Most of the technologies that have been explored for supporting informal caregivers of PLWD include off-loading objective burdens, such as the activities that are visible and seen—monitoring PLWD’s whereabouts , scheduling tasks and reminders , physical caring , helping with the PLWD’s deteriorating cognitive abilities , and information and social support. Little work has focused on the subjective burden of caregivers—the emotional, invisible side of caregiving. The research community has mainly portrayed such subjective caregiving work as a ‘burden’ with a negative connotation. 2.3 Emotion work in Informal Caregiving Hochschild coined the term emotion work to refer to the management and navigation of emotional processes in professional, paid work [43, 45]. Hochschild developed this concept to describe the work done by flight attendants in managing the expression of their own emotions. Hochschild considered emotion work to be a skill developed by individuals if they work with others face to face and are required to manage their emotions in such interactions. Emotion work is guided by feeling rules that regulate what types of emotional behaviors are deemed appropriate in a given context and within particular roles. The individual often works on evoking or suppressing emotions so as to render them “appropriate” to a situation. Emotion work is considered to be a part of many professions that require face-to-face or voice interactions, including teaching , nursing , and counseling. We leverage Hochschild’s emotion work concept and extend it to describe informal, unpaid caregiving work. Emotion work in caregiving has extensively been explored for informal caregivers of cancer patients. The caregivers helped the cancer patient stay strong and brave in the face of a cancer diagnosis, even though these were not the genuine emotions they felt. Caregivers also put in work to suppress their negative emotions to remain strong or to evoke positive emotions for the care recipient and do the right thing as a caregiver. Emotion work was especially difficult when the patient was emotionally distraught, when tension occurred between the patient and caregiver, or when the patient did not want to talk about the disease [76, 97]. Few studies also explored emotion work by informal caregivers of PLWD [38, 42, 89]. Informal caregivers of PLWD have to suppress their true emotions and control their frustration in order to behave in the way they perceive to be appropriate. For instance, caregivers were stressed but put on a positive Proc. ACM Hum.-Comput. Interact., Vol. 8, No. CSCW1, Article 48. Publication date: April 2024. Role of Technology in Emotion Work of Informal Caregivers 48:5 face for the PLWD. The studies identified that caregivers of PLWDs need support in helping them manage this emotion work and that future studies should investigate the nuance of this support, taking into account caregivers’ emotions. Guan et al. explored dementia community health workers’ accounts of designing technology to support the emotional needs of informal caregivers. They suggested using embodied cues such as visuals, robots performing activities, and sounds to promote non-verbal communication between caregivers and PLWD. Houben et al. examined using sounds to promote well-being in PLWD and their caregivers, supporting conversations and social and emotional connections between them [47, 48]. Work that has explored applying robots to offload some of the burdens involved in dementia caregiving, such as providing social companionship to PLWD and helping them live independently , suggests making the robots emotionally intelligent and engaging. Several researchers have started to focus on the positive aspects of caregiving, such as a sense of reward, satisfaction, and companionship. Peacock et.al found caregivers of PLWD often reported positive experiences, including personal growth, a sense of competence, and closer family relationships. Through caregiving, caregivers were able to connect with others as an effective coping strategy for negative emotions associated with caregiving. Al-Megren et al. also shared how dementia caregivers shared rewarding experiences of caregiving on TikTok. These positive experiences provide opportunities for supportive interventions that can lead to better experiences for both patients and caregivers [17, 34, 49]. Such focus on the positive experiences of caregivers pushes us to rethink whether we should shift our attention to not just what technology should replace in the caregiving work, but what technology should not replace. This approach of attempting to understand when technology should not intervene aligns with the ongoing discussions on the appropriate role of artificial intelligence technology [54, 92]. Building on the discourse around emotion work and expanding on research in supporting the social and emotional needs of informal caregivers through technology, we further investigate the subjective burdens in caregiving PLWD and how to support the work involved in dealing with the complexities of emotions involved in caregiving. 3 METHODS To understand caregivers’ experiences of caring for PLWD and what the role of technology might be in supporting them, we conducted semi-structured interviews with caregivers of PLWD. Below, we walk through our research processes from recruitment to data analysis. 3.1 Participants The inclusion criteria of recruitment included participants who (i) were caregivers to a PLWD, (ii) were over 18 years old, (iii) did not have a cognitive disability, (iv) were able to speak and read English fluently, (v) resided in the United States, and (vi) had access to the internet and a camera-enabled device. The average age of the participants was 43.4 years (SD=12.6). Of the 12 participants, 9 were females, and 3 were males. There were 6 White people, 4 Black people, and 2 Asian people. The average age of the PLWD the participants cared for was 80.1 years (SD=10.1), with two PLWD no longer living. 7 PLWD were females, while 5 were males. In terms of the latest stage of PLWD, the participants reported 1 PLWD was in the early stage of dementia, 3 were in the middle stage, 4 were in the late stage of dementia, and 4 were unknown. The average time the participants cared for the PLWD was 5.09 years (SD=4.99), with a maximum of 15 years and a minimum of 1 year. The demographics of the participants and the PLWD they cared for are shown in Table 1. Participants were recruited through a screening questionnaire posted on Drexel University’s internal recruiting system and on Philadelphia city Craigslist. Given the recruitment challenges Proc. ACM Hum.-Comput. Interact., Vol. 8, No. CSCW1, Article 48. Publication date: April 2024. 48:6 Diva Smriti, Lu Wang, & Jina Huh-Yoo Table 1. Demographics of the Participants and the PLWD They Cared For Participant Age Gender Race PLWD’s Re- PLWD’s Age PLWD’s PLWD’s PLWD’s Demen- Duration Cared ID lationship Gender Race tia Stage for PLWD P1 45 Female White Father Not living Male White NA 10 years P2 20 Male Black Grandfather 82 Male Black NA 1 year P3 40 Male Black Father 72 Male Black Early stage 1 year 6 months P4 23 Female Black Mother 58 Female Black Late stage 2 years P5 64 Female White Mother 87 Female White NA 15 years P6 37 Female White Husband 58 Male White Middle stage 4 years P7 49 Female Asian Mother 92 Female Asian NA 15 years P8 53 Male White Mother 74 Female White Late stage 1 year 2 months P9 41 Female Black Mother 75 Female Black Middle stage 4 years P10 58 Female White Mother 86 Female White Late stage 3 years 6 months P11 38 Female Asian Grandmother Not living Female Asian Late stage 2 years P12 53 Female White Friend 87 Male White Middle stage 2 years due to people feeling overwhelmed to participate in research during the COVID-19 pandemic, we used Craigslist, a recommended outlet by a local expert in dementia research, to maximize the recruitment. We posted the requirements on Craigslist of one city (Philadelphia), but the participants recruited were from various cities in the United States. A $25 Amazon gift card was given to each participant as compensation for participating in the study. 3.2 Data Collection: Semi-structured Interviews Drexel University’s Institutional Review Board approved this study. We conducted the study online via the Zoom videoconferencing service (a video conferencing platform that has data usage agreement with the university). We conducted Zoom instead of in-person interviews because the interviews happened during the COVID-19 pandemic (June - July 2022), when our city was still under social distancing rules. Also, the participants were geographically dispersed, so traveling for the interview study was not always feasible, especially given the participants’ already busy schedules. Each participant was asked to participate in one interview session. In each session, beginning with an informed consent process, we started a semi-structured interview, asking about what caregiving meant to them (RQ1). We then asked the participants questions about their caregiving process and what they liked and disliked about caring for a PLWD (RQ1, RQ3). We also probed participants on what tasks they could see technology doing for them and what tasks they did not want technology to do for them (RQ2). The researchers further probed the participants by asking them what support they received and used for themselves, who they received this support from, and how this support helped them (RQ3). The interviews were audio-recorded and transcribed. Each interview lasted between 50-70 minutes. 3.3 Data Analysis We transcribed the interviews and applied Strauss and Corbin’s grounded theory , specifically using open coding and constant comparison techniques for the analysis. The data analysis process included interpretations that emerged through interactions with our participants, with our data, and between the authors. Data analysis was an ongoing process throughout data collection, involving discussions between the authors around emerging themes after every interview. The interviewer made field notes after each interview and discussed new insights with the rest of the team. At the end of data collection, the authors randomly selected two interview transcripts (approxi- mately 10% of the total transcripts) and conducted open coding using NVivo 12. The authors Proc. ACM Hum.-Comput. Interact., Vol. 8, No. CSCW1, Article 48. Publication date: April 2024. Role of Technology in Emotion Work of Informal Caregivers 48:7 generated codes together, discussing any disagreements that arose. During this process, interview- ers’ insights and other authors’ independent interpretation of the transcribed data were discussed together. The first author then coded the remaining ten transcripts based on the agreed codes. The authors met weekly to discuss the newly emerged codes to maintain agreement and extract insights as a team. The open codes were refined throughout these iterative cycles of discussions. Because we focused primarily on the participants’ experience conducting emotion work in dementia caregiving, open coding resulted in codes that represented various themes around the caregivers’ perceptions of when help from technology was/was not needed, associated challenges with emotion work, and relationships with the people involved in dementia caregiving. After completing the coding process, the team iteratively conducted affinity diagramming on the generated codes to identify broader themes relating to each research question while performing constant comparisons of the resulting codes. Each of the generated codes was written on a separate sticky note on Miro and clustered by their relationships, including similarity, differences, and hierarchy. The affinity diagramming resulted in two levels of themes relating to each research question. For example, some high-level themes include ‘how participants became caregivers,’ ‘what it means to be a caregiver,’ ‘informational tasks,’ and ‘the work that increases personal connection, deep conversations, and bonding.’ Some low-level themes include ‘fell into being a caregiver,’ ‘challenging yet rewarding experience,’ ‘check on PLWD’s health progress over time,’ and ‘making sure to check in and ‘being there’ for PLWD.’ The findings section below discusses these themes under each research question. 4 FINDINGS To the participants, caregiving was a challenging but rewarding experience, which became more demanding over time (RQ1). As part of the attempt to manage the caregiving tasks, participants expressed that mundane, logistical tasks that did not require emotional effort could be handed off to technology. At the same time, participants shared they did not want technology to take over certain caregiving work, even though it was stressful. This was because these tasks allowed the participants to make increased personal connections with the PLWD and made them feel emotionally rewarded (RQ2). Finally, participants shared the distress they faced as part of their caregiving due to other caregivers, the changing nature of caregiving, and their challenges managing emotions (RQ3). 4.1 RQ1. What Does Being a Caregiver Mean? When the participants shared how they became a caregiver, they expressed that they either chose to be one or ‘fell into being a caregiver’ (P4, P5, P7) because they were the only ones available among their family members (P2, P10), have been living together with the PLWD (P3, P7, P8), considered themselves ‘more compassionate’ than other family members (P4, P12), or kept their family tradition of taking care of the PLWD as their disease worsened (P7, P9, P11). These varied starting points and perspectives as a caregiver contributed to multiple interpretations of what it means to provide caregiving. Three participants perceived dementia caregiving as ‘challenging yet rewarding’. Although they faced problems in their day-to-day lives as a caregiver, they were motivated by the reward they received in the form of ‘joy and smiles’ they could extend to the PLWD. They even considered caregiving as ‘an honor’: “It’s been both a blessing and an honor to be able to care for somebody and make them smile and give them a little bit of joy in the time that they have left.” -P6 “For the most part, I would say it’s a 90% positive with the 10% just being the hard days of just not wanting to admit that you need more help. Or, just even on my end, it being Proc. ACM Hum.-Comput. Interact., Vol. 8, No. CSCW1, Article 48. Publication date: April 2024. 48:8 Diva Smriti, Lu Wang, & Jina Huh-Yoo just difficult maybe to get out to her for that day, or just having one extra thing on my calendar to do in the week and it [caregiving] being more mandatory than before. So those have been the difficulties, but overall I’ve had a pretty positive experience. I’m glad I can take care of my mom [PLWD].” -P4 Six participants perceived caregiving as advocating for the needs of the person they cared for. They deemed it important that the caregivers be considerate of the PLWD’s ‘body and spirit’ and ensure that the needs of the PLWD are being met—caregivers were just the ‘deliverers of the message,’ and they had to respect the PLWD as a person with the ‘final voice’: “Being someone’s advocate means protecting them, not taking away their voice but heightening their voice and amplifying their voice because they still have one... making sure that I’m not overshadowing the person that my mom [PLWD] still is just because I’m helping her out with a couple of favors. I think caregivers are supposed to be just the deliverers of the message in a way, not the final voice.” -P4 “Caregiving means making sure all the needs are met— the spiritual, the emotional, and the physical needs. And it may not mean hands-on care, but it means finding resources needed and filling in where you need to what is needed.” -P5 P2 and P3 felt that caregiving meant ‘sacrificing [their] time and needs’ to cater to the needs of and show their love for the person they cared for. P3 said, “Sacrificing, I mean, you create time from your busy time to help someone or maybe a family member out, showing love and care to the person.” P2 added, “For me, it [caregiving] is sacrifice because not everyone can do it. Somebody else might come in, and after a while, maybe they leave because they are not comfortable having to be there always.” P1 and P4, on the other hand, felt caregiving meant ‘taking care of [themselves] too’ by ‘making sure that I’m giving care to myself first before I go out and try to give it to someone else.’ Such self-care was needed because dementia caregiving was not a stable experience but something that all participants said changed drastically over time. Participants often considered caregiving a positive thing and strived to make it a positive experience for the PLWD as well, both in a physical, mental, and spiritual way. They even considered caregiving ‘an honor’ rather than just doing tasks for the caregivers. However, these positive meanings they put toward caregiving were not constant but changed over time as dementia caregiving became more demanding as the disease progressed. Accordingly, to maintain the positive meaning of caregiving, some help would be needed over time to ease the caregiving burden. 4.2 RQ2a. The Work Caregivers Wanted Technology To Do for Them Easing the caregiving burden meant some of the caregiving tasks could be done by technology. The participants currently managed the logistics of caregiving and sought help with mundane, everyday tasks from technology. 4.2.1 Technological Solutions Can Help With Utilitarian, Mundane Tasks. The participants cited various technologies they used to hand off everyday caregiving tasks, which helped them be more independent. The participants often used grocery and local store mobile apps to get groceries and food delivered to their door (N =5). One participant mentioned using a camera to monitor PLWD’s condition. Participants also mentioned the possibility of technology helping them figure out the logistics of scheduling tasks with other caregivers (N =5). Technology also helped PLWD communicate with other people through video calling instead of having to have others visit them or drive the PLWD to meet them in person. Video calling helped the PLWD to feel less isolated Proc. ACM Hum.-Comput. Interact., Vol. 8, No. CSCW1, Article 48. Publication date: April 2024. Role of Technology in Emotion Work of Informal Caregivers 48:9 while staying in the comfort of their homes, which was especially beneficial for older adults who often could not get outside. Video calling, instead of voice-only phones, helped the participants better understand what the PLWD was trying to communicate through non-verbal actions: “The other thing that’s made things easier for us is also teaching her [PLWD] how to live stream video conference on her phone using an app. That’s made it easier instead of calling because sometimes the way she’s explaining something is in a language I don’t understand. So, I ask her to show me what she’s talking about, so that’s helpful.” -P8 P3 used a camera to monitor the PLWD and regularly checked from his room how the PLWD was doing and if they needed help. One instance that P3 recalled of when he found the camera useful was when he was attending a Zoom meeting and heard a sound. P3 was able to assess the urgency of the situation quickly with the help of technology and take appropriate action: “I was on Zoom having a meeting with my colleagues. Suddenly, I heard a sound. I knew the sound was coming from his [PLWD’s] room. I checked the camera on the laptop so I could see him— on the floor. I ran out of my room to his room. I saw him on the floor grumbling and crying, and pointing at the cup of water.” -P3 Being able to hand off grocery shopping and transporting people for in-person visits helped the caregivers to focus on other important tasks, including taking time out for themselves. Although the participants did not currently use them, they thought technology would be useful for task reminders (P3) or scheduling appointments with providers (P7, P9). Five participants (P3-5,7,9) had trouble scheduling caregiving tasks with other caregivers, finding out what tasks they wanted to do, and their progress with those tasks. For example, P3 felt he always had to inform his wife about the tasks he had already done for his father (PLWD) before leaving the house. He was frustrated doing this again and again, but it was also mandatory for his wife to know the tasks she had to take care of. For such logistical help in handling scheduling, the participants felt technology could help. Participants also used mobile apps and websites to get more information on taking care of PLWD for everyday tasks. For instance, P5, P6, P8, P9, P10, and P12 used WebMD and Google to search for information related to dementia. In addition to these, P5 also used Medline. P4 and P10 used social media such as Tiktok and Instagram to get advice and support from other caregivers going through the same process. Telehealth apps that let the participants schedule doctor appointments and check on PLWD’s health progress over time were used by P2, P5, and P9. However, these technologies were often culturally irrelevant. One participant, P7, who had an East Asian background, wanted culturally relevant scheduling applications for the PLWD. For instance, she wanted a bilingual calendar that had both English and Chinese languages together on the same calendar. This feature could help her mother (PLWD), who wasn’t fluent in English, to also make use of the calendar application by herself, thereby reducing the burden on P7. Although many technological solutions were available for them for informational and logistical tasks, participants felt other tasks, such as physically demanding tasks (e.g., lifting and doing laundry), lacked support. The participants wanted to hand off helping PLWD to help them to become more independent physically. For instance, participants needed help with lifting PLWD after a fall (P5), helping PLWD take a walk outside their homes (P2), and monitoring PLWD for any accidents or medical attention (P3). P5 elaborated on how she thought technology could help and said, “Something to help with lifting. That would be really helpful for home caregivers. Lifting PLWD is archaic in the medical field. Even in a hospital setting, even when you have the best equipment, it’s not very dignifying [for PLWD].” Proc. ACM Hum.-Comput. Interact., Vol. 8, No. CSCW1, Article 48. Publication date: April 2024. 48:10 Diva Smriti, Lu Wang, & Jina Huh-Yoo Such technological support can help the participants in aiding PLWD to become more indepen- dent physically, thereby reducing the burden on the caregivers. We examined how participants viewed the caregiving work that can be handed off to technology. This work often included mundane work, physical tasks, or logistics, such as coordinating with other secondary caregivers. At the same time, however, the participants felt that some of these very tasks that were mundane and physically demanding still had an emotional value, thus, they wanted to keep them as their own tasks and not let technology take over. 4.3 RQ2b. The Work Caregivers Did Not Want Technology To Do for Them Throughout the interviews, we discovered there were things that the participants were unsure about handing off to anyone, let alone technology. We continued to probe this aspect— what caregiving tasks the participants did not want technology to do for them. Participants felt those tasks that enabled personal connection, deep conversations, and bonding were something they would like to continue doing themselves, even though these tasks were emotionally and physically challenging. 4.3.1 The Work That Increases Personal Connection, Deep Conversations, and Bonding. There were routine work as well as emotionally challenging but rewarding caregiving tasks that participants were uncertain of handing off to technology. These tasks were those that enabled personal connec- tions through increased interactions with the PLWD, either through physical touch, conversations, or handling and managing the personal information of the PLWD. Examples included helping PLWD take a bath (P3, P9), making meals for PLWD (P2-7,9,11), combing PLWD’s hair (P4, P10), making medical decisions on behalf of PLWD (P5, P9) or managing PLWD’s financial affairs (P8). Giving a bath made P3 remind himself of his childhood and the warmth that his father, the PLWD, gave to him, “I think the task I would not want to hand off would be helping him [PLWD] to take his bath in the morning. I always loved to do that because I remember, when I was young too, he wanted to help me with my baths. I would still want to help him with his bath. That’s like trying to cherish him more.” P1 and P4 explained below that making sure to check in and ‘being there’ to ensure the PLWD is on routine with everyday tasks were also important to them in building their bond and personal connection: “Probably just seeing her [PLWD] as often as I do, I would still want to be the person to see her three times a week, make sure she’s good. I wouldn’t want someone else to be checking in on that front, I would want to be making sure that I physically see her, get her food, and make sure she’s getting enough nutrients in all of her categories and stuff.” -P4 “Task reminders [from technology], things like that I think are okay. But, the ‘being there for them’ is something that I wouldn’t want to take away. I wouldn’t want all of their reminders to come from an electronic device, essentially.” -P1 Making sure that they see PLWD at certain frequencies was a criterion participants had in continuing the personal connection they needed. These caregiving tasks participants referred to as not wanting technology to do on their behalf were not always special tasks but ‘everyday stuff’— the routine work that mattered in being able to stay with the person. For example, P12 emphasized the importance of a ‘constant caregiver’ and not ‘handing off everything’ because constantly being with the PLWD also gave a sense of responsibility and accomplishment to P12: “I think it’s important to have someone who’s a constant. I couldn’t hand off everything”. Participants also did not want to hand off the tasks that enabled ‘deep talks’ with the PLWD. These talks helped participants develop a lasting bond with the PLWD, therefore making caregiving more rewarding: Proc. ACM Hum.-Comput. Interact., Vol. 8, No. CSCW1, Article 48. Publication date: April 2024. Role of Technology in Emotion Work of Informal Caregivers 48:11 “[I would like to keep] the part where I interact with him [PLWD].Most of the time nowadays, we usually have really great conversations. There was this time something was bothering me, and I talked with him, and he helped me solve that issue. I felt like with his knowledge on it, I don’t think others would have handled it the way he handled.” -P2 Even though the PLWD were cognitively declining, they were still there to give the participants wisdom and advice that they could not get otherwise. Similarly, P11 below shared how sharing a meal enabled such an opportunity for more conversation, which led to strengthening their relationship: “I’ve always thought that sharing a meal is a good opportunity for conversation. It strengthens the relationships between the individuals, between the caregiver and the receiver.”Also, P7 found it frustrating to cook for her mother (PLWD), a native Asian, as there were specific food items that her mother liked that P7 did not like to prepare. Even though cooking for her mother was challenging, P7 did not want other people or technology to take over this task. Cooking for her mother gave her a reason to show affection for her mother and to also share a conversation with her mother, with food serving as a common memory for both from P7’s childhood. Not only did participants benefit from the conversation with PLWD, but participants perceived PLWD could also benefit from unstructured conversations. However, P2 pointed out that current technology tends to make things into ‘question and answers’ and that those are not what makes for ‘good’ conversations: “I could say maybe if the technology would come in place of maybe me having to interact with him, there are some stuff that he would miss out because there are some things that maybe we can talk with him like we can discuss where maybe he can’t with the technology because it will be just giving answers to whatever he’s asking, not a conversation.” -P2 Another area that enabled a deeper connection with PLWD was medical tasks and information that were personal to the PLWD (P5, P9). Since the participants were emotionally connected to and responsible for the PLWD, they felt they could make better decisions than anybody else around medical decision-making or managing medical tasks. P9 said, “I don’t want anyone to be in control of her [PLWD’s] medicine. Making medical decisions? No. She’s my family member, and I feel I would make a better decision. I might consult somebody, but I’m not going to have them make the decision.” This caregiving work that involved more connection between the PLWD the participants referred to so far helped the participants show their appreciation towards the PLWD. Even the tasks that seemed like chores had an emotional component that worked as a way for the participants to show their love and appreciation for the PLWD, which led to bonding. 4.3.2 The Rewarding Side of What Seems Like a Chore. Counter-intuitively, participants expressed that the challenging caregiving tasks made them participants feel more emotionally rewarded and they did not want technology to take over these tasks. These tasks meant more than just physically taking care of a person to the participants. P4 and P6 saw caregiving as ’not just a chore’ or ‘a job’ but as something that they liked to do and felt rewarded from: “By chore, I mean [caregiving] is not just a job. People say, ‘This is my job. I hate my job.’ It’s just something that I do. I love doing it. It’s just in my nature I care for people and to help people and I would do it for anybody if they asked me to.” -P6 P4 considered caregiving to go beyond doing chores, but also adding engagement to their own and the PLWD’s life, and said “Caregiving is not just like changing diapers and stuff, caregiving can also be we’re watching cartoons for an hour, we’re watching something from your childhood Proc. ACM Hum.-Comput. Interact., Vol. 8, No. CSCW1, Article 48. Publication date: April 2024. 48:12 Diva Smriti, Lu Wang, & Jina Huh-Yoo just to bring some engagement to your life.” Similarly, P11 found it challenging to deal with her late grandmother’s (PLWD) frustrations and tantrums. P11 felt it was ‘hard in the moment’ to converse with her grandmother when she was having a tantrum or argument. She discussed how technology could help her record her everyday life, which she could use as a moment of ‘reflection and savoring’. She could ‘replay the action to talk about what happened and how we could address that more appropriately in the future.’ However, P11 also felt that tantrums and arguments were an ‘opportunity’ to talk about suppressed feelings of both the caregiver and the PLWD, which she would not want technology to replace. Five participants (P4, P6, P8, P11, P12) perceived caregiving as coming in different forms– caregiving was not just about helping with physical stuff but also being there for the PLWD and providing emotional support. It was about simple hugs or enjoying each other’s company and just helping out with ‘absolutely anything she [PLWD] needs’: “[Caregiving is] providing any kind of help or support in any way, shape or form that I possibly can. So, in its most basic form, it’s me giving my mom a hug when I see her, any time I get off the train, that’s where it begins. We enjoy each other’s company... anything, absolutely anything that she needs help with.” -P8 Such engagement and being there to help with ‘anything’ was what participants saw as irreplace- able. It was hard to generalize, pinpoint, or concretely define what can be handed off to technology because caregiving came in many forms, in a ‘whole bunch of shapes and sizes’. For example, P4 said, “I mean I think caregiving is an interesting aspect, not a lot of people look at it like a profession or almost like a mandatory path for the family, but I think it can come in a whole bunch of shapes and sizes.” Caregiving was complex, a mix of job, chores, loving acts, or personal connections. The emotion- ally challenging side of caregiving brought out the rewarding experience. To keep these emotional rewards, participants developed coping mechanisms that would allow them to keep going. 4.4 RQ3. Challenges of Caregiving and How Caregivers Cope With Them Even though the emotional connection with PLWD is what made the participants feel rewarded, there was a challenging side of this caregiving work that the participants attempted to find coping strategies for. The distress of everyone involved, including the PLWD, other caregivers, and the participants themselves, added to the distress and burden of the participants. 4.4.1 Emotional Distress of Other People Adding to Primary Caregivers’ Emotional Challenges. People involved in caregiving all experienced some amount of psychological distress, which added to the emotional challenges of the primary caregiver, the participants in our study. For instance, PLWD were often demanding and angry as they could not do things by themselves, such as simple communication with the participants, as they often forgot names and tasks (P3, P5, P7, P8, P11). PLWD became ‘cranky’ when they missed meals (P4, P7) and were very particular about getting things done on time (P2, P7). These experiences and the frustration from PLWD added to the emotional challenges of the participants: “Yeah, I would say most challenging and stressful in the sense that he [PLWD] can talk but not really trying to tell me what he needs or what he wants to do. And also, the problem of not remembering things he needs to do, or maybe fulfilling his personal duties... I’m always there to take him around. I always try my best to help him out doing such things.” -P3 Such behavior changes from the cognitive decline of PLWD added to the caregivers’ emotional challenge. PLWD often forgot names and things they had to do, which increased frustration in Proc. ACM Hum.-Comput. Interact., Vol. 8, No. CSCW1, Article 48. Publication date: April 2024. Role of Technology in Emotion Work of Informal Caregivers 48:13 the participants (P5, P7, P8, P11). For example, P7 was frustrated that “She [the PLWD] forgets things. So she says one thing, does another, and she likes doing her things her way in the house, this way, that way. It’s a little frustrating to deal with that.” The physical limitations of the PLWD also induced frustration and anger that they directed toward the participants. This made caregiving sometimes frustrating for the participants, as P7 noted, “When she [PLWD] is very demanding, she won’t put the other hearing aid on, or she doesn’t turn it high enough, so I have to scream. My voice goes loud and everything. She puts the wrong glasses on, so she can’t see because she has them for distance, and close up, and everything, so it’s frustrating.” As such, although there are solutions to the problems (e.g., hearing aid for hearing loss), unantici- pated problems occur (e.g., hearing aid is uncomfortable), generating heightened negative emotional experiences for the participants. There was often friction between taking care of the PLWD while at the same time allowing them to age with dignity (P4, P7, P8). PLWD did not want to accept that they needed help, making the process of caregiving a tricky balancing act: “Just the emotional aspect of people wanting to age with dignity and trying to be able to give that to them. I’m 23, so I haven’t had to think too much about [not being] functional.... In a situation like that I’m the person kind of taking [the dignity] away from her while also trying to help her, so balancing the two of that can be tricky.” -P4 Not only did the participants have to take on this balancing act with PLWD, but coordinating care with other caregivers was also emotionally burdensome. Some participants did not get along with other caregivers but still had to work with them (P2, P8). P8 elaborated, “Because, me and my sister, the only thing we have in common is DNA. Meaning, we do not get along, and we do not see eye to eye on almost everything outside of the universe here. [Coordinating caregiving] was limited to text message exchanges for the most part. Once, I moved into my mom’s [PLWD] apartment for two weeks to take care of basically everything except for transportation because I don’t drive. So, my sister was able to transport her back and forth for appointments. My mother would get that set up between us without us having to actually speak to each other.” Notice how P8 used the expression ‘transport back and forth’, rather than ‘driving my mom’, showing how he considered his sister to not provide emotional support to the PLWD, unlike what P8 does. Dividing tasks and figuring out who does what task was also frustrating when secondary caregivers offered limited help (P1, P3). P3 found that “Mostly, I’m the one doing the tasks because she [P3’s wife, secondary caregiver] is always busy.” Participants could seek logistical help with everyday tasks from other caregivers. However, this coordination generated more emotional challenges for the participants when it did not do well. It was also difficult when other caregivers did not put in the same amount of emotion work as the participants did. 4.4.2 The Changing Nature of Emotions in Dementia Caregiving. Caregiving began as rewarding, positive, or even honorable work. However, as PLWD progressed with their dementia conditions, the burden of caregiving changed, and the participants experienced more negative emotions than before. Also, other external factors, such as relationships with other caregivers and the degrading physical and cognitive condition of PLWD, changed how participants perceived caregiving. However, the participants, who were the primary caregivers, also gained more experience over time and adapted to the changing nature of the disease. For instance, P2 initially had the challenge of adapting from being a single college student to someone who lived with another person whom he took care of. P2 felt overwhelmed, especially during the initial days of caregiving, as he was less prepared to take care of another person: Proc. ACM Hum.-Comput. Interact., Vol. 8, No. CSCW1, Article 48. Publication date: April 2024. 48:14 Diva Smriti, Lu Wang, & Jina Huh-Yoo “Because I hadn’t lived with him [PLWD]. I used to visit his place, see him around, and go back. Now I had to adjust to the fact that I had to live with him throughout the day and throughout the week. Yeah, for that long. So that was the first problem. Also, the roles that my aunt used to take had to be switched to me. So it was a bit difficult to adapt to that.” -P2 As such, caregivers would go through various phases of feeling challenged. This (P2) was the participant who later felt caregiving was an activity that strengthened his personal connection with his grandfather and that he felt glad to be able to take care of his grandfather. Even as caregivers adapted over time, PLWD’s dementia condition became worse, which came as another emotional challenge for the participants. The participants felt they were ‘not in control of the situation’, as P1 noted, “But that, I think, were some of the biggest challenges that I went through as a caregiver. Just a lot of it was not being able to be in control of that situation, and nothing I did really seemed to have any effect.” Such a feeling of ‘nothing I did seemed to have any effect’ added to the emotional challenge of the participants. As PLWD’s condition got worse, participants started to feel that the PLWD was losing the personal bond with them (P5, P7, P9, P11). Remembering how she once was more of a daughter rather than a caregiver, P5 said, “No, my situation isn’t so much of a daughter now as being a caregiver. Because when I’m just a daughter, we have a lot more fun. The first time she [PLWD] turned me down for a Braves game, I knew that things were changing.” When the personal bond was something that caregiving brought them with rewarding experi- ences, it was challenging to face losing that emotional reward with the PLWD. P9 felt that “It can be stressful. It could be a lot. Meaning, as the person [PLWD] is my mother and watching my mom be sick, it could be sad.” As PLWD moved towards the later stages of dementia, it became difficult to think of ways to include the PLWD in activities so that the personal bond was not lost (P5, P7, P9, P11). For example, P5 exclaimed, “It seems like everything I do now, I think, ‘How am I going to get Mother [PLWD] to experience this? How are we going to include Mother in this?”’ As PLWD progressed in their condition, the caregiving burden continued to increase over time, where it became more scheduled and demanding for the participants. As PLWD’s dementia progressed from early to mid to late stage, participants felt more stressed taking out time from their schedules to cater to the different needs of PLWD: “In the beginning, she didn’t require as much care. She was able to walk and she was still feeding herself and everything. Over time, she’s lost different abilities. So there’s more dependency now than it was in the beginning.” -P9 “[caregiving burden] has increased over time. Also, I’m the one who has to have difficult conversations with her. And in snippets, we do this and have been doing this for the last couple of years in terms of what she wants to have happened when she passes.” -P8 All participants similarly shared, like P8, that their caregiving burden increased with time, with caregiving becoming more ‘demanding and scheduled’. For example, P4 stated that, as her mother’s (PLWD) dementia started to worsen, caregiving became more ‘mandatory than optional’. This change happened within six months of her caring for her mother. Similarly, P8 felt that his caregiving for his mother (PLWD) has increased over time as his mother’s condition worsened. He also found himself having to have ‘difficult conversations’ now, such as what would happen when she passes away. This changing nature of dementia caregiving made the personal meaning of caregiving to shift over time as well. As primary caregivers dealt with the changing and mostly worsening emotional challenges involved in dementia caregiving, such as even planning the passing of PLWD, they attempted different ways to cope— muddling through these challenges that seemed to get worse over time. Proc. ACM Hum.-Comput. Interact., Vol. 8, No. CSCW1, Article 48. Publication date: April 2024. Role of Technology in Emotion Work of Informal Caregivers 48:15 4.4.3 Muddling Through Constantly Changing Emotions in Dementia Caregiving Through the Support of Other People. Even though participants did not want to let technology take over some of the tasks that were emotionally challenging, they still sought and received support from therapists, friends, and family, and even attempted to develop self-coping mechanisms for psychological support. This support helped the participants to muddle through the changing experiences of dementia caregiving, helping them to voice their frustrations and come up with plans to deal with these problems by themselves. Four participants were seeing therapists (P4, P6, P10, P11). The participants stated therapists helped them ‘deal with the current situation’, ‘unload some of the frustrations’, and ‘balance taking care of themselves and PLWD’. How often they saw the therapists varied, with participants often resolving to self-coping mechanisms. As P7 said, “[I see the therapist] maybe once or twice a month, if that. Most of the time, I can cope by using my coping mechanisms, like going for a walk or getting on my computer, listening to music or going somewhere.” Friends and family of participants, who were sometimes other caregivers of PLWD, also helped to provide emotional support (P3, P5, P7, P8, P9). They provided a listening ear to the participants’ problems and helped the participants feel calm. P3 said he felt supported by his family who “have been very helpful– calling, checking on me, checking on my dad. I think that’s very, very helpful.” This support was, however, limited to the friends and family listening to the participants’ problems. Participants also developed self-coping mechanisms to better take care of themselves. Some participants (P4, P6, P8, P9) preferred doing physical activities such as going for a walk, exercising, doing yoga, or canoeing to help calm themselves down. P7 and P11 listened to music whenever they felt frustrated or stressed. P4 said she ‘cried and moved on’ whenever she felt emotionally distressed during caregiving. The coping mechanisms helped participants to talk about and temporarily overcome their emotional challenges. However, the participants could not think of permanent solutions that they could regularly use to help them cope with the emotionally challenging side of caregiving. Accordingly, they opted to think of caregiving as a ‘sacrifice’ they had to make to deal with difficult emotions. As P1 said, “Being a caregiver is an act of sacrifice. Having the ability to be able to put someone else above your own needs, that is difficult.” The participants perceived this emotional support they received from friends, family, therapists, or self-coping mechanisms as an aid to the caregiving tasks they were in charge of completing. The participants were comfortable receiving help and support to aid them in completing the emotionally challenging tasks but did not want technology to take over these tasks. This finding presents an insightful perspective into what is acceptable when thinking about supporting tasks through technology in dementia caregiving and how we should let the primary caregivers be the main drivers of completing these tasks. Next, we discuss how the findings should be interpreted through the lens of emotion work and how technology might support this changing, dynamic, and challenging but rewarding ‘emotion work of caregivers.’ 5 DISCUSSION The findings all pointed to how much caregiving work was intertwined with ‘emotion work.’ This emotion work involves striving to be in control, balancing, sacrificing, being persistent, and finding joy in hardships. Participants, as primary caregivers, attempted to take control of caregiving at the center of different people involved in caregiving. Participants felt joy and rewarded even as they encountered challenges. They were the primary witness to the worsening dementia of someone they loved. They muddled through these ‘ebbs and flows’ of the emotional side of caregiving. Here, we first summarize the caregiving tasks and what part of these tasks caregivers wanted technology to do for them. We then discuss what they did not want technology to do for them in Proc. ACM Hum.-Comput. Interact., Vol. 8, No. CSCW1, Article 48. Publication date: April 2024. 48:16 Diva Smriti, Lu Wang, & Jina Huh-Yoo terms of emotion work, and connect it with Star and Strauss’ articulation and invisible work , followed by implications for the role of technology in caregiving. 5.1 The Emotion Work in Dementia Caregiving In Table 2, we summarize dementia caregiving work that involves various physical, logistical, and informational tasks. These tasks are visible tasks that can often be supported by technology. For each of these tasks, we show the emotional side of the task that the participants did not want technology to do for them. These parts of the tasks presented the invisible, emotion work involved with these tasks. Emotion work as exemplified in the far right column of Table 2 is work that caregivers undertake in order to: (1) juggle negative emotions that come with positive emotions, (2) maintain the positive experience in the changing nature of dementia, (3) while managing negative experiences to not make them harmful for themselves or anyone involved. Such emotion work is often tied to the caregivers’ identity and value as a caregiving person (e.g., ‘feeling honored’), as we discovered in RQ1. It is also tied with all kinds of tasks that one might want others, including technology, to do for them (e.g., washing hair, cooking, scheduling appointments). As we discovered from P1-4 in RQ2, however, these everyday tasks were coupled with sentimental memory and personal connections that caregivers had with the PLWD, perceiving caregiving as ‘rewarding’ or ‘an act of love’. Participants were able to have deeper conversations with PLWD in between the caregiving tasks but also found it emotionally challenging to meet PLWD’s increasing needs. Participants were sad to both witness the PLWD’s deteriorating mental health and also know that they may have to go through the same condition in the future. However, they were content knowing that they had helped their loved ones during the most difficult time in their lives, just as their PLWD had helped as a caregiver to their loved ones when they were younger. As the dementia of some PLWD worsened, the emotions of participants who cared for them intensified— there were frustrations in dealing with PLWD’s changing behaviors, psychological distress, and sadness on witnessing PLWD’s deteriorating health conditions. It became difficult for the participants to stay motivated when PLWD, who were often their family members or a loved one, could not even remember them. The participants then worked harder to hang onto the personal connections and values that caregiving brought to them. To manage the negative side of emotion work, participants found coping strategies as we discovered from answering RQ3. 5.2 Articulating the Invisible Emotion Work To Be Visible and Supported Star and Strauss describe the ecology of visible and invisible work , in which informal work becomes invisible because there does not exist a formal definition or connotation to the work. Additionally, informal work often becomes part of the background and is taken for granted by virtue of routine and social status. The emotion work we saw in our findings was largely functionally invisible in ways that Star and Strauss describe. Participants in our study put in emotion work that was taken for granted and often went unrecognized by family members, including the PLWD. This invisible nature of emotion work added to the subjective burden of caregivers as they could not figure out appropriate ways to divide the work or seek support and just ‘muddled through the challenges.’ Researchers have used the discourse on invisible work to generate an understanding of supporting caregiving and care coordination. For instance, Hochschild described how people often experienced guilt, inauthenticity, and self-blame due to their ongoing and often unrecognized, invisible emotion work. Johnson et al. discussed how the caregivers of PLWD require much emotional support to help them navigate the caregiving journey. Benavides et al. explained informal caregivers felt overwhelmed and burdened from fulfilling their tasks, and this experience was invisible to other members of the family network. Building on the existing Proc. ACM Hum.-Comput. Interact., Vol. 8, No. CSCW1, Article 48. Publication date: April 2024. Role of Technology in Emotion Work of Informal Caregivers 48:17 Table 2. What Participants Wanted Technology To Do Versus Not Do for Them What caregivers want technol- What caregivers did not want ogy to do for them (Often visible technology to take away from work) them (Often involves invisible emotion work) Physical tasks Help bring over food and grocery Memories associated with meals shopping PLWD made for them Help find someone to babysit the Memories from childhood brought caregivers’ children when they are up when caring for PLWD’s hy- busy running errands giene (combing PLWD’s hair, help- ing PLWD take a bath) Help with PLWD’s independence Social connection earned from (lifting PLWD after a fall, helping spending time and doing activities PLWD take a walk) together Check in on the PLWD when they Checking in on PLWD regularly (caregivers) are not available and just ‘being there’ for them Help transport PLWD for in-person Routine tasks that help them stay clinic visits close to the PLWD Logistical tasks Help balance the time with other The emotional support received caregivers and figure out schedules from other caregivers Help manage the expectation of Emotionally tied caregiver coor- tasks with other caregivers in- dination and logistics, such as fi- volved and progress tracking nances Schedule doctor appointments and Making medical decisions on behalf visits of PLWD Help with video calling to under- Deep talks and conversations with stand non-verbal communication the PLWD of PLWD Informational Help seek information on dementia Receiving advice and wisdom from tasks and taking care of PLWD PLWD’s experiences Monitor PLWD for accidents and Emotions involved in managing health progress over time PLWD’s deteriorating physical and mental health Dealing with the Help take time out for themselves Managing PLWD’s frustrations and Deteriorating anger Health Condi- Online support groups for advice Difficult emotions seeing the deteri- tion of PLWD and emotional support oration of PLWD’s health over time Proc. ACM Hum.-Comput. Interact., Vol. 8, No. CSCW1, Article 48. Publication date: April 2024. 48:18 Diva Smriti, Lu Wang, & Jina Huh-Yoo discourse around invisible work in CSCW [15, 68, 91], we argue that the invisible, emotion work is the critical component that constitutes caregiving and should be appropriately made visible and supported. However, this invisible work was, at the same time, what the participants did not want technology to take over. We further discuss how technology design should address such a double-edged problem. 5.3 What Technology Should or Should Not Do in Supporting the Emotion Work of Caregivers of PLWD Prior work in CSCW, HCI, and other fields on designing technology to support the caregiving of PLWD has often focused on what part of caregiving work can be reduced and replaced by technology to ease the burden [15, 55, 84, 87, 93, 109]. That is, what the technology can do for them. The attention has been on the negative aspect of caregiving burden, and understandably so, given the critical harm that it can bring. Although few pieces of literature highlighted the positive emotions caregivers experience, our work shifts the focus to the emotion work of caregiving and expands on its complexities around the duality of emotions–its positive and negative nature and caregivers’ nuanced perceptions of what tasks they want technology to intervene in. Participants in our study did not want technology to completely take over this invisible, emotion work as it strengthened their emotional bond with the PLWD, but they also faced challenges because of this work. Our work highlights that emotion work is not simply a problem to be solved but a complex, multifaceted, ever-changing situation with which we must grapple. Rather than imagining what solution technology design offers to the problems of emotion work, we must think of design as intervention support in a complex situation. We should design technology that fosters, maintains, embraces, and strengthens the emotion work to make dementia caregiving possible. Based on this novel focus, we discuss what technology should not do , a large gap that we address in the CSCW and HCI literature in caregiving. 5.3.1 Technology Should Not Replace But Support Caregivers’ Sense of Control Over Emotion Work. Whether the caregiving tasks were emotionally rewarding or challenging, participants preferred to be in control of them and did not want technology to take over the tasks of emotional value to them (Section 4.3). Participants felt these emotional tasks helped them to engage in deeper, personal interactions with the PLWD that they did not want to let go of. This finding is in line with prior work, which states that caregivers want to maintain agency over the caregiving work, especially when they receive help from others. However, as we see from Section 4.4.3, participants also sought support from other people, such as therapists, friends, and family, to navigate the emotional challenges they faced. This finding presents a unique problem to solve, wherein participants understand they need help sometimes but do not want to give away control of the emotion work for fear of losing a personal connection with the PLWD. To help caregivers stay in control of their emotion work and feel safe with using technology, technological systems should aim at doing small tasks that are part of the larger task [16, 96]. Technological systems can help caregivers achieve a particularly challenging microtask within a larger task, thereby ensuring that the overall control over the caregiving work continues to remain under the caregiver. For example, we had presented that P11 found it challenging to deal with her late grandmother’s (PLWD) frustrations but also felt that these frustrations and arguments were an opportunity to talk about suppressed feelings. Instead of taking over the task of resolving arguments with PLWD, technology could provide support to the caregivers whenever needed. For instance, as things got heated during arguments, participants forgot what they had said and how they had reacted to PLWD. P11 discussed technology could help her ‘replay’ the arguments so that she could reanalyze the argument when she was calmer. This process could help caregivers Proc. ACM Hum.-Comput. Interact., Vol. 8, No. CSCW1, Article 48. Publication date: April 2024. Role of Technology in Emotion Work of Informal Caregivers 48:19 come up with ways of reconciling with the PLWD and addressing arguments more appropriately in the future. Furthermore, during arguments, we suggest technology can also intervene and remind caregivers that PLWD may not necessarily be reacting due to a perceived lack of care but just due to the toll of dementia disease taking over the PLWD. Having technology also play music, pictures, or stories [48, 57, 105] that caregivers shared with PLWD can help caregivers to move on from the argument and find the motivation to reconcile with PLWD. Such examples of simple features that involve technology intervening for the duration of the microtask could help caregivers cope with the emotional challenges and learn and develop a deeper emotional bond with PLWD. 5.3.2 Technology Should Go Beyond Supporting Negative Caregiving Burden to Supporting the Changing, Double-sided Emotion Work in Dementia Caregiving. The emotion work in caregiving that technology helps with should not only be about psychological outcomes, such as reducing anxiety or depression [22, 63, 90, 103]. The emotions involved in dementia caregiving are forever changing, especially as PLWD’s dementia progresses. The emotions involved are also double-sided, where there is frustration and anger, and there is love and forgiveness. Technology should be aware and able to adapt to these changing emotion work of the caregivers, especially when emotions intensify towards the later stages of dementia and may require regulation. Dixon et al. suggested designing adaptive and context-aware systems that take into account the current cognitive and physical ability of PLWD. In our study, for example, as P5’s mother (PLWD) moved to the late stage of dementia and began to lose her memory, she stopped participating in games with P5, making it sad for P5 to witness this change in her mother. Yet, P5 was always looking for ways to include her mother in activities and for her mother to share experiences with her so that she could still feel close to her mother. To help caregivers during such periods of intense, double-sided emotions, we can start by designing technology to create adaptive experiences that both PLWD and caregivers can participate in and share. An example would be tracking and recording events and memories [48, 57, 105] when PLWD are in the earlier stages of dementia and can participate in these events. As the PLWD’s condition worsens and their abilities decline, the same system could then frequently play back these recordings and memories to both caregivers and PLWD. This can help caregivers, and PLWD re-live their memories and remind them of the bond and experiences they shared. Such an example of adaptive technological aid for remembering fond memories during sad periods [23, 82] for both PLWD and caregivers can help them further strengthen, remember, and cherish the bond between them, making caregiving more rewarding. 5.3.3 Technology Should Help Articulate Emotion Work of Primary Caregivers To Others While Maintaining Emotional Privacy of the Caregivers. Coordination in informal caregiving is often implicit and comes with its own set of challenges [37, 85]. These challenges include the primary caregiver being overburdened with having to implicitly assume the role of coordinating tasks with other caregivers, resulting in emotional frustration. In our study, participants found it challenging to balance time and caregiving tasks with other caregivers (Section 4.4.1). Although other caregivers often took care of logistical tasks, they were often not involved in the same amount of emotion work the participants engaged in with the PLWD. Other caregivers were also not fully aware of the extent of emotion work primary caregivers put in, increasing the tension between the caregivers. To ease this tension, we suggest technology should help make the emotion work of primary caregivers visible to other caregivers involved. For example, a digital whiteboard that shows the emotion work the primary caregiver put in for that day, such as resolving an argument, can be displayed in the common room for the whole family to see and recognize the invisible emotion work. This visibility of emotion work put in by primary caregivers will help other people get more context and appreciation for the depth of work being put in by primary caregivers. This visibility can also make other caregivers more proactive toward resolving any emotional tensions they may develop Proc. ACM Hum.-Comput. Interact., Vol. 8, No. CSCW1, Article 48. Publication date: April 2024. 48:20 Diva Smriti, Lu Wang, & Jina Huh-Yoo in the future with the primary caregiver. This complex, individualized, and situated nature of the emotion work and what part of the work can be shared with technology for support is an open question and calls for more work. As we discuss making the invisible emotion work of caregivers visible using technology, privacy issues may arise. Mentis et al. explored emotion work in an emergency room (ER) setting and discussed privacy issues. They suggested that technology be transient in conveying the invisible emotions of the users, and the users are appropriately informed about this feature to build trust in the system. Technology should refrain from permanently storing information about emotion work of caregivers and give caregivers the agency to remove this information, to decide how long their emotional information is stored, and how this information can be used over time. Relatedly, technological systems hold the promise of alleviating some of the concerns participants had about losing control of emotion work and not developing deeper bonds with PLWD. Details on what the technology should be, how it should look like, where it should be placed, or what modality of interactions is favorable should be further explored and situated in the caregiving context. 5.4 Applying the Lessons to Other Contexts of Caregiving As we have learned from caregiving in chronic conditions such as cancer, severe chronic back pain, glaucoma, diabetes, and stroke [15, 76, 97], our work can also apply to such similar contexts that might require emotion work by the caregivers. Here, the care recipient’s worsening health condition due to the chronic condition takes a toll on the caregiver burden [33, 86]. Chronic condition caregiving thus becomes similar to dementia caregiving, wherein the emotion work changes as the disease progresses, often intensifying towards the end stages. Technology can help make visible to the care recipients the difference caregivers make in their lives, which can help resolve some of the tension between the care recipients and caregivers, supporting the emotion work of informal caregivers. Another similar context is caregiving for people with cognitive and learning disabilities. Cognitive disabilities can lead to difficulties in problem-solving, memory, attention, and comprehension, similar to dementia. People can learn to resolve their cognitive disabilities, or they may worsen with time, such as dementia. Caregivers need to handle the care recipient’s emotions and frustrations along with their own, demanding increased challenges in emotion work from the caregivers. We can apply and extend our learning about the role of technology in helping with the emotion work of informal caregivers to contexts similar to dementia. 5.5 Limitations and Future Work There are some limitations to this study. First, 9 out of 12 participants were female, resulting in a skewed gender ratio of the participants. Therefore, the findings may not be representative of other genders. However, literature shows the majority of informal caregivers reported are females [28, 73], which generates new possible research directions around the role of gender in the emotion work of caregiving. Second, 6 out of 12 participants were White people, which may have made the findings not representative of other races and cultures. We only had two Asian family caregivers who participated in our study. A new theme around culturally appropriate support started to emerge for the Asian participants, but we did not have enough data to further probe such seemingly critical implications for technology design. Future work should look at recruiting gender and racially-diverse populations to account for fuller findings. Third, most participants were primary caregivers of the PLWD, resulting in findings from their perspective on coordination challenges. Future work should also account for the perspectives of caregivers other than the primary caregiver to understand more about the complexities of emotion work in coordinating dementia care. Proc. ACM Hum.-Comput. Interact., Vol. 8, No. CSCW1, Article 48. Publication date: April 2024. Role of Technology in Emotion Work of Informal Caregivers 48:21 6 CONCLUSION Informal caregivers of PLWD are overburdened physically, financially, and emotionally. Current work on dementia informal caregivers is limited to providing technological interventions that help with their adverse psychological outcomes such as depression, anxiety, strain, etc. Furthermore, technology supporting dementia has focused on reducing the burden (visible work) through what it can do for them. Our study is a first step towards defining the dual, invisible emotion work in informal dementia caregiving and understanding how technology can play a role in (not) supporting the different facets of emotion work by informal caregivers. We provided insights into the invisible emotion work primary caregivers undertake, how primary caregivers’ negative and positive emotions are intertwined with caregiving work and intensify as PLWD move toward the later stages of dementia, and what role technology should play in supporting caregivers. Specifically, we investigate which part of caregiving work caregivers did not want technology to take over or do for them. We contribute to how technology can help provide momentary help with some of the emotion work in caregiving while adapting to the changing nature of the emotion work of dementia caregiving and providing visibility and support to the work. 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