The Human Need for Equilibrium: Qualitative Study on the Ingenuity, Technical Competency, and Changing Strategies of People With Dementia Seeking Health Information.

BACKGROUND: Prior research on health information behaviors of people with dementia has primarily focused on examining the types of information exchanged by people with dementia using various web-based platforms. A previous study investigated the information behaviors of people with dementia within a month of their diagnosis. There is an empirical gap in the literature regarding the evolution of health information needs and behaviors of people with dementia as their condition progresses. OBJECTIVE: Our work primarily investigated the information behaviors of people with dementia who have been living with the condition for several (4 to 26) years. We also aimed to identify their motivations for changing their information behaviors over time. Our primary research questions were as follows: how do people with dementia get informed about their condition, and why do people with dementia seek information about their condition? METHODS: We adopted an action research approach by including 2 people with dementia as members of our research team. Collaboratively, we conducted 16 remote 1-hour contextual inquiry sessions with people living with mild to moderate dementia. During the study sessions, the first 40 minutes included semistructured interviews with participants concerning their information behaviors, followed by a 20-minute demonstration of their information-seeking strategies. Data from these interviews were analyzed using a constructivist grounded theory approach. RESULTS: Participants described their information needs in terms of managing the disrupted physiological, emotional, and social aspects of their lives following a diagnosis of dementia. They used various information behaviors, including active search, ongoing search, monitoring, proxy search, information avoidance, and selective exposure. These information behaviors were not stagnant; however, they were adapted to accommodate the changing circumstances of their dementia and their lives as they worked to re-establish equilibrium to continue to engage in life while living with a degenerative neurological condition. CONCLUSIONS: Our research revealed the motivations, changing abilities, and chosen strategies of people with dementia in their search for information as their condition evolves. This knowledge can be used to develop and improve person-centered information and support services for people with dementia so that they can more easily re-establish equilibrium and continue to engage in life.

Control Matters in Elder Care Technology:: Evidence and Direction for Designing It In.

Studies find that older adults want control over how technologies are used in their care, but how it can be operationalized through design remains to be clarified. We present findings from a large survey (n=825) of a well-characterized U.S. online cohort that provides actionable evidence of the importance of designing for control over monitoring technologies. This uniquely large, age-diverse sample allows us to compare needs across age and other characteristics with insights about future users and current older adults (n=496 >64), including those concerned about their own memory loss (n=201). All five control options, which are not currently enabled, were very or extremely important to most people across age. Findings indicate that comfort with a range of care technologies is contingent on having privacy- and other control-enabling options. We discuss opportunities for design to meet these user needs that demand course correction through attentive, creative work.

Understanding How Sensory Changes Experienced by Individuals with a Range of Age-Related Cognitive Changes Can Effect Technology Use.

Clinical researchers have identified sensory changes people with age-related cognitive changes, such as dementia and mild cognitive impairment, experience that are different from typical age-related sensory changes. Technology designers and researchers do not yet have an understanding of how these unique sensory changes affect technology use. This work begins to bridge the gap between the clinical knowledge of sensory changes and technology research and design through interviews with people with mild to moderate dementia, mild cognitive impairment, subjective cognitive decline, and healthcare professionals. This extended version of our ASSETS conference paper includes people with a range of age-related cognitive changes describing changes in vision, hearing, speech, dexterity, proprioception, and smell. We discuss each of these sensory changes and ways to leverage optimal modes of sensory interaction for accessible technology use with existing and emerging technologies. Finally, we discuss how accessible sensory stimulation may change across the spectrum of age-related cognitive changes.

Barriers to Online Dementia Information and Mitigation.

There is growing interest in HCI to study ways to support access to accurate, accessible, relevant online health information for different populations. Yet, there remains a need to understand the barriers that are posed by the way our platforms are designed as well as how we might overcome these barriers for people with dementia. To address this, we conducted sixteen interviews and observation sessions with people with mild to moderate dementia. Our analysis uncovered four barriers to online health information and corresponding mitigation strategies that participants employed. We discuss how HCI researchers may apply these findings towards new technical approaches and standards concerning information accessibility and credibility for neurodiverse populations. Finally, we broaden the scope of HCI research to include investigations of the accessibility and credibility of online information for people with age-related cognitive impairment independent of proxies.

Investigating the Potential of Artificial Intelligence Powered Interfaces to Support Different Types of Memory for People with Dementia.

There has been a growing interest in HCI to understand the specific technological needs of people with dementia and supporting them in self-managing daily activities. One of the most difficult challenges to address is supporting the fluctuating accessibility needs of people with dementia, which vary with the specific type of dementia and the progression of the condition. Researchers have identified auto-personalized interfaces, and more recently, Artificial Intelligence or AI-driven personalization as a potential solution to making commercial technology accessible in a scalable manner for users with fluctuating ability. However, there is a lack of understanding on the perceptions of people with dementia around AI as an aid to their everyday technology use and its role in their overall self-management systems, which include other non-AI technology, and human assistance. In this paper, we present future directions for the design of AI-based systems to personalize an interface for dementia-related changes in different types of memory, along with expectations for AI interactions with the user with dementia.

Mobile Phone Use by People with Mild to Moderate Dementia: Uncovering Challenges and Identifying Opportunities: Mobile Phone Use by People with Mild to Moderate Dementia.

With the rising usage of mobile phones by people with mild dementia, and the documented barriers to technology use that exist for people with dementia, there is an open opportunity to study the specifics of mobile phone use by people with dementia. In this work we provide a first step towards filling this gap through an interview study with fourteen people with mild to moderate dementia. Our analysis yields insights into mobile phone use by people with mild to moderate dementia, challenges they experience with mobile phone use, and their ideas to address these challenges. Based on these findings, we discuss design opportunities to help achieve more accessible and supportive technology use for people with dementia. Our work opens up new opportunities for the design of systems focused on augmenting and enhancing the abilities of people with dementia.

Does XR introduce experience asymmetry in an intergenerational setting?

Intergenerational social interactions are beneficial for bridging generational gaps, strengthening family bonds, and improving social cohesiveness. However, opportunities for in-person intergenerational social interactions are decreasing as families become increasingly geographically dispersed. Researchers are examining how technology might support these interactions. Extended Reality (XR) is an emerging technology that has shown potential for supporting immersive remote interactions but might cause an "experience asymmetry" in an intergenerational setting. In this poster we contrast the user experience of younger and older participants engaging in remote gardening sessions with our social XR prototypes. We present systemic influence factors that affected user experience of participants from different age groups differently with our XR prototypes. We discuss potential approaches to mitigate their effects based on observational learning and becoming aware of designer biases.

Probing the Potential of Extended Reality to Connect Experts and Novices in the Garden.

As extended reality (XR) systems become increasingly available, XR-based remote instruction is being adopted for diverse purposes in professional settings such as surgery and field servicing. Hobbyists have been well-studied in HCI and may similarly benefit from remote skill-sharing. However, little is known about how XR technologies might support expert-novice collaboration for skilled hobby activities. This paper examines the potential and limitations of XR to connect experts and novices for one such activity: gardening. Through two studies involving 27 expert and novice gardeners, we designed prototypes to understand 1) practitioner perceptions of XR and remote skill-sharing in the garden and 2) what kinds of interactions can be supported in XR for expert-novice groups. We discuss design opportunities and challenges for XR systems in supporting informal connecting interactions and meaningful sensory interactions with a remote environment during skill-sharing.

Designing for and with People with Dementia using a Human Rights-Based Approach.

User-centered design is typically framed around meeting the preferences and needs of populations involved in the design process. However, when designing technology for people with disabilities, in particular dementia, there is also a moral imperative to ensure that human rights of this segment of the population are consciously integrated into the process and respectfully included in the product. We introduce a human rights-based user-centered design process which is informed by the United Nations Convention on the Rights of Persons with Disabilities (CRPD). We conducted two editions of a three-day-long design workshop during which undergraduate students and dementia advocates came together to design technology for people with dementia. This case study demonstrates our novel approach to user-centered design that centers human rights through different stages of the workshop and actively involves people with dementia in the design process.

Studying the Formation of an Older Adult-Led Makerspace.

Makerspaces are being introduced in a wide variety of settings, including community settings such as schools and libraries. Older adults are one group for whom making agendas are being pursued, with envisioned outcomes such as supporting agency and well-being. However, research on making and DIY with older adults typically study individuals who are already engaged in making practices or bring individuals in to a technology environment that has already been created. In this paper, we study the older adult-driven formation of a makerspace in an independent living community. Through an ethnographically-informed approach, we studied the ways that individuals considered appropriate allocation of resources towards a makerspace, scoped activities, evaluated goals, and made trade-ofs. Our analysis is centered around describing the way that this makerspace formed as well as three ways that individuals made sense of the makerspace as the planning unfolded: the openness of a space that promises to cater to interests of the population; the promise of a makerspace to involve more residents in technology, but the need to obscure the technology to make it appealing; and a valuation of the return on investment for limited fnancial and space resources. Our discussion contributes to supporting and studying early adoption of technology by older adults, complicates visions of "making for all," and presents considerations regarding the often under-specifed community of a makerspace.

"Taking care of myself as long as I can": How People with Dementia Configure Self-Management Systems.

Self-management research in HCI has addressed a variety of conditions. Yet, this literature has largely focused on neurotypical populations and chronic conditions that can be managed, leaving open questions of what self-management might look like for populations with progressive cognitive impairment. Grounded in interviews with seventeen technology savvy people with mild to moderate dementia, our analysis reveals their use of technological and social resources as part of the work of self-management. We detail how participants design self-management systems to enable desired futures, function well in their social world, and maintain control. Our discussion broadens the notion of self-management to include future-oriented, sociotechnical, self-determinate design. We advocate for expanding the way technologists, designers, and HCI scholars view people with mild to moderate dementia to recognize them as inventive creators and capable actors in self-management.

Dignity, Autonomy, and Style of Company: Dimensions Older Adults Consider for Robot Companions.

Research into companion robots for older adults, including those who are socially isolated and lonely, continues to grow. Although some insight into older adults' preferences for various robotic types and functionality is emerging, we lack research examining how these robots fulfil or challenge a range of values and aspirations individuals have in later life. This study examines the attitudes and perspectives of 16 older adults (aged 65+) living independently but alone in their own homes, who were interviewed and shown videos depicting three distinctive companion robots: a talking assistant; a roving toylike vehicle; and a robotic dog. This approach illuminated values, preferences, and needs amongst older people that are vital for understanding the potential of companion robots. In comparing the robots, participants expressed concerns about the impact of different companion robots on their abilities and skills, their sense of autonomy and control over their lives, and the maintenance of several kinds of dignity. These results inform user-centered design and use of companion robots for older people living alone and independently.

The Work of Workplace Disclosure: Invisible Chronic Conditions and Opportunities for Design.

Health disclosure at work is complicated for people with invisible chronic conditions. Due to the lack of visible symptoms, invisible conditions affect the work life of people in ways that are not obvious to others. This study examines how people disclose and conceal their conditions in the workplace and opens the design space for this topic. In the first phase, we analyzed posts on two subreddit forums, r/migraine and r/fibromyalgia, and found a range of strategies that individuals use to disclose or conceal their conditions. In the second phase, we created five technological design concepts based on these strategies that were shown to eight people with migraines or fibromyalgia in semi-structured interviews. Based on these phases, we contribute understandings of disclosure and concealment of invisible conditions in the workplace for future research, such as potential areas for intervention ranging from individual to societal level efforts, as well as the potential and limitations of relying on empathy from others.

Adopting Diffractive Reading to Advance HCI Research: A Case Study on Technology for Aging.

Researchers in Human-Computer Interaction (HCI) have long developed technologies for older adults. Recently, researchers are engaging in critical reflections of these approaches. IoT for aging in place is one area around which these conflicting discourses have converged, likely in part driven by government and industry interest. This article introduces diffractive analysis as an approach that examines difference to yield new empirical understandings about our methods and the topics we study. We constructed three analyses of a dataset collected at an IoT design workshop and then conducted a diffractive analysis. We present themes from this analysis regarding the ways that participants are inscribed in our research, considerations related to transferability and novelty between work centered on older adults and other work, and insights about methodologies. Our discussion contributes implications for researchers to form teams and account for their roles in research, as well as recommendations how diffractive analysis can support other research agendas.

Investigating Best Practices for Remote Summative Usability Testing with People with Mild to Moderate Dementia.

People with dementia may miss out on the benefits of using technology, because they often find it difficult to use. Usability testing is one method to identify barriers and areas for improvement in technology. Unfortunately, usability testing is often not conducted with people with dementia, independent of their caregivers. Difficulty recruiting local participants with dementia who regularly use technology further compounds the problem. Remote methods have been proposed as one approach to recruiting hard-to-reach populations. Currently, it is unclear how to effectively conduct remote summative usability testing with people with dementia. We recruited 15 participants. Five took part in the pilot study and 10 participated in the main study. We identify best practices and make suggestions for remote summative usability tests with people who have mild to moderate dementia, independent of caregivers. We discuss our findings in three sections: (1) logistics for planning remote summative usability testing, (2) approaches for conducting remote summative usability testing, including modifications of research methods, and (3) considerations when evaluating findings from remote summative usability sessions. We also present modified usability testing methods we developed to meet the unique needs of users with mild to moderate dementia, and summarize lessons learned and new directions for research on this topic.

How Content Authored by People with Dementia Affects Attitudes towards Dementia.

Negative attitudes shape experiences with stigmatized conditions such as dementia, from affecting social relationships to influencing willingness to adopt technology. Consequently, attitudinal change has been identified as one lever to improve life for people with stigmatized conditions. Though recognized as a scaleable approach, social media has not been studied in terms of how it should best be designed or deployed to target attitudes and understanding of dementia. Through a mixed methods design with 123 undergraduate college students, we study the effect of being exposed to dementia-related media, including content produced by people with dementia. We selected undergraduate college students as the target of our intervention, as they represent the next generation that will work and interact with individuals with dementia. Our analysis describes changes over the period of two weeks in attitudes and understanding of the condition. The shifts in understanding of dementia that we found in our qualitative analysis were not captured by the instrument we selected to assess understanding of dementia. While small improvements in positive and overall attitudes were seen across all interventions and the control, we observe a different pattern with negative attitudes, where transcriptions of content produced by people with dementia significantly reduced negative attitudes. The discussion presents implications for supporting people with dementia as content producers, doing so in ways that best affect attitudes and understanding by drawing on research on cues and interactive media, and supporting students in changing their perspectives towards people with dementia.

An avian dominance hierarchy at a supplemental water source in the Patagonian steppe.

Birds often compete and engage in interspecific agonistic interactions for access to resources such as food and breeding territories. Based on the observed outcomes from such interactions (i.e., patterns of displacements) dominance hierarchies can be established. Knowing which species can outcompete others for essential resources allows researchers to make predictions about the broader ecological impacts of interspecific interactions. We constructed an interspecific dominance hierarchy of twelve avian species which visited an artificial water source in an arid region of coastal Patagonia, Argentina. Displacements were categorized into four types, based on the behaviors involved in the interaction, and we tested if they could predict the difference in dominance between the interacting species (the difference between calculated dominance coefficients for the two focal species). Indirect displacements, involving only the arrival of the dominant species to the water source without direct aggression toward the subordinate bird, occurred more frequently between species with a large difference in dominance. The most dominant bird observed was the kelp gull (Larus dominicanus), which, due to an increasing population and expanding range, in part due to food supplementation from fisheries waste, is likely to outcompete terrestrial and marine avian species for other scarce resources.

Relational, Flexible, Everyday: Learning from Ethics in Dementia Research.

Engaging in participatory research in HCI raises numerous ethical complexities such as consent, researcher relationships, and participant compensation. Doing HCI work in the area of dementia amplifies these issues, and researchers in this area are modelling ethical stances to ensure researcher-participant relationships focus on meaningful engagement and care. This paper presents an insight into the kinds of ethical foci required when doing design research with people living with dementia and their carers. We interviewed 22 HCI researchers with experience working in dementia care contexts. Our qualitative analysis outlines subsequent lessons-learned, such as recognition of the participants, self-care, research impact, and subjectivity in ethical review boards. Furthermore, we found the complexity of navigating both "everyday" and more formal, institutional ethics in dementia research has implications beyond the context of working with people with dementia and outline key considerations for ethical practices in socially orientated HCI research.

Approach Matters: Linking Practitioner Approaches to Technology Design for People with Dementia.

Technology design for dementia is an active and growing area. Though work to date has largely addressed functional needs, there is a growing recognition of the importance of supporting meaningful activities. However, technology for active, rather than passive, engagement is relatively novel beyond specific applications (e.g., music or reminiscence therapy). To better understand how to support active engagement of people with dementia in activities, we interviewed nineteen practitioners. Our findings reveal differing approaches to making sense of the actions of people with dementia, as well as to engaging them in activities. We discuss the importance of tracing epistemological understandings of dementia to different configurations of technology for people living with dementia and provide a practical guide to support designers to do so. Finally, we discuss considerations for the design of dementia technologies around facilitating self-actualization and managing emotional exposure for care-providers.

Supporting Remote Participation when Designing with People with Dementia.

Exploring accessible remote design methods has become the need of the hour for supporting participation in research and collaborative design with individuals with dementia. Existing remote design approaches face specific challenges when facilitating best practices for co-design with participants with dementia. These challenges include, enabling sensory engagement with physical design materials and prototypes and observing these interactions in a natural manner. We present a system architecture and use cases for a portable system with a range of connected devices that support real-time, embodied design activities with individuals with dementia.