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

Dixon, Emma; Piper, Anne Marie; Lazar, Amanda

doi:10.1145/3411764.3445225

Cited by 25 publications

(10 citation statements)

References 100 publications

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“…There is a relatively stronger representation of the approach of automatic collection of data using sensor networks in literature [9,18,19]. However, we join with recent work [8] in calling designers and developers to explore the other two approaches that center the needs and wishes of individuals with dementia on how AI learns about their information presentation needs in order to support individuals privacy preferences and their need to be self-determinate.…”

Section: Discussionmentioning

confidence: 99%

“…We analyzed transcripts from Dixon and Lazar's study [8] of sessions completed by 17 participants (average age = 62.5 years) with mild to moderate dementia (Table 1) who self-reported being regular users of technology. Some participants identified as dementia advocates and even being members of advocacy organizations' peer-support groups in the past.…”

Section: Study Details 21 Participants and Proceduresmentioning

confidence: 99%

“…using Artificial Intelligence (AI), as a scalable approach to make mainstream technologies accessible rather than custom builds of dementia-specific assistive technologies [8,26]. Dixon and Lazar [7] discuss the concept of an AI-driven interface that learns from the user with Dementia to improve interface usability.…”

Section: Introduction and Related Workmentioning

confidence: 99%

“…However, there is a lack of understanding on the perceptions of people with dementia around AI as an aid on their everyday devices and its role as part of the user's overall self-management approach that include other non-AI technology, and human assistance. This paper presents an analysis of transcripts from Dixon and Lazar's interview study on self-management of information needs by people with dementia [8]. Prior HCI and sociology research has shown that multiple analysis through different perspectives albeit of the same data can yield different useful insights and allows wider use of data from rare or inaccessible participants such as people with dementia [12,16].…”

Section: Introduction and Related Workmentioning

confidence: 99%

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

Maddali

Dixon

Pradhan

et al. 2022

CHI Conference on Human Factors in Computing Systems Extended Abstracts

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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. CCS CONCEPTS• Human-centered computing → Human computer interaction (HCI).

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Section: Discussionmentioning

confidence: 99%

Section: Study Details 21 Participants and Proceduresmentioning

confidence: 99%

Section: Introduction and Related Workmentioning

confidence: 99%

Section: Introduction and Related Workmentioning

confidence: 99%

See 2 more Smart Citations

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

Maddali

Dixon

Pradhan

et al. 2022

CHI Conference on Human Factors in Computing Systems Extended Abstracts

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“…RenderX to practice self-determination well into the progression of the condition [32][33][34]. In addition, technology research has informed our practice of supporting people with dementia [35] and other disabling conditions to take an active role in their own health and well-being [36][37][38][39]. These perspectives have influenced the ways in which we conduct research on how people with dementia use information.…”

Section: Xsl • Fomentioning

confidence: 99%

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

Dixon¹,

Anderson²,

Blackwelder³

et al. 2022

J Med Internet Res

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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.

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Barriers to Online Dementia Information and Mitigation

Dixon

Anderson

Blackwelder

et al. 2022

CHI Conference on Human Factors in Computing Systems

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

Cited by 25 publications

References 100 publications

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

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

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

Barriers to Online Dementia Information and Mitigation

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