Search for: All records

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. 

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. 

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. 

Background: Research suggests that direct exposure to suicidal behavior and acts of self-harm through social media may increase suicidality through imitation and modeling, with adolescents representing a particularly vulnerable population. One example of viral self-harming behavior that could potentially be propagated through social media is the Blue Whale Challenge (BWC). Objective: We investigate how people portray BWC on social media and the potential harm this may pose to vulnerable populations. Methods: We first used a grounded approach coding 60 publicly posted YouTube videos, 1112 comments on those videos, and 150 Twitter posts that explicitly referenced BWC. We deductively coded the YouTube videos based on the Suicide Prevention Resource Center (SPRC) Messaging guidelines. Results: Overall, 83.33%, 28.33%, and 68.67% of the YouTube videos, comments, and Twitter posts were trying to raise awareness and discourage participation in BWC. Yet, about 37% of the videos violated six or more of the SPRC messaging guidelines. Conclusions: These posts might have the problematic effect of normalizing BWC through repeated exposure, modeling, and reinforcement of self-harming and suicidal behavior, especially among vulnerable adolescents. Greater efforts are needed to educate social media users and content generators on safe messaging guidelines and factors that encourage versus discourage contagion effects.