Together they shall not fade away: Opportunities and challenges of self-tracking for dementia care |
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| Institution: | 1. School of Computing and Information, University of Pittsburgh, Pittsburgh, Pennsylvania, USA;2. School of Information Science, University of Kentucky, Lexington, Kentucky, USA;3. School of Nursing, The University of Texas at Austin, Austin, Texas, USA;4. School of Information, The University of Texas at Austin, Austin, Texas, USA;1. West China Biomedical Big Data Center, West China Hospital, Sichuan University, No.37 Guoxue Alley, Chengdu 610041, China;2. Department of Radiology, West China Hospital, Sichuan University, No.37 Guoxue Alley, Chengdu 610041, China;3. West China Periodicals, West China Hospital, Sichuan University, No.37 Guoxue Alley, Chengdu 610041, China;4. Department of Bile Duct Surgery, West China Hospital, Sichuan University, No.37 Guoxue Alley, Chengdu 610041, China;1. College of Computer and Communication Engineering, Zhengzhou University of Light Industry, Zhengzhou, China 450002;2. School of Cyber Science and Engineering, Wuhan University, Wuhan, China 430079;3. School of Information Engineering, North China University of Water Resources and Electric Power, Zhengzhou, China 450045;4. Henan Key Laboratory of Cyberspace Situation Awareness, Zhengzhou 450001;1. Institute of Environmental Science and Technology, Universitat Autònoma de Barcelona, Spain;2. Graduate School of Economics and Management, Ural Federal University, Yekaterinburg, Russian Federation |
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| Abstract: | Dementia is a major public health concern, and mobile technologies have been identified as having the potential to improve the quality of life for individuals with dementia and their caregivers. Recent research, however, suggests that technology-based solutions are frequently driven by and beneficial to caregivers, not both. Emerging personal technologies that are equipped with self-tracking are an ideal option for accommodating person-centered care in light of the collaborative nature of dementia care. However, there is a lack of investigation on how tracking occurs in the context of dementia care. This article presents a thematic analysis of the types of tracking-related information desired in dementia care online communities, as well as how and by whom they are desired through adapting the Conceptual Model of Shared Health Informatics (CoMSHI) for tracking in chronic illness management. Our findings show that four types of tracking metrics are desired for nine types of information: safety alert for wandering, falls, and strangers, reminders of daily life activities and medical and health related activities, monitoring data related to daily life activities and data related to health status, and remote control for patients' daily life activities and financial safety. Family members, caregivers, community members, and persons with dementia involved in work with tracked data face specific challenges. We recommend that self-tracking technologies be implemented in dementia care through collaboration, with the recognition of different types of information as well as different roles involved and with particular attention paid to different types of data work and related roles in data work. |
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