Views of Caregivers on the Ethics of Assistive Technology Used for Home Surveillance of People Living with Dementia

Abstract

This paper examines the ethics of using assistive technology such as video surveillance in the homes of people living with dementia. Ideation and concept elaboration around the introduction of a camera-based surveillance service in the homes of people with dementia, typically living alone, is explored. The paper reviews relevant literature on surveillance of people living with dementia, and summarises the findings from ideation and concept elaboration workshops, designed to capture the views of those involved in the care of people living with dementia at home. The research question relates to the ethical considerations of using assistive technologies that include video surveillance in the homes of people living with dementia, and the implications for a person living with dementia whenever video surveillance is used in their home and access to the camera is given to the person’s family. The review of related work indicated that such video surveillance may result in loss of autonomy or freedom for the person with dementia. The workshops reflected the findings from the related work, and revealed useful information to inform the service design, in particular in fine-tuning the service to find the best relationship between privacy and usefulness. Those who took part in the workshops supported the concept of the use of camera in the homes of people living with dementia, with some significant caveats around privacy. The research carried out in this work is small in scale but points towards an acceptance by many caregivers of people living with dementia of surveillance technologies. This paper indicates that those who care for people living with dementia at home are willing to make use of camera technology and therefore the value of this work is to help shed light on the direction for future research.

Why Older Adults and Their Children Disagree About In-Home Surveillance Technology, Sensors, and Tracking

“…According to this study's participants, privacy is not just an intrinsic value that is valuable for privacy's sake, but rather, it is integral and necessary to enjoy other values like freedom, independence, and identity. Much of the aging and technology research has been driven by an interventionist logic, focused on validating a technology's acceptability (Peine & Neven, 2019), yet our findings align with critiques of the tradeoff framing that is often used in this work because it has the effect of oversimplifying older adults' experiences (Mulvenna et al, 2017;Cavoukian and Emam, 2010). Our participating dyads did not always agree on how values would be impacted, or if these values could be traded.…”

“…In another study with a high rate of acceptance of in-home monitoring, 60% of users had privacy or information security concerns, and these concerns increased after one year of use (Boise et al, 2013). The "zero-sum" tradeoff framing has been critiqued for its simplistic creation of mutually exclusive perspectives and for its potential to diminish certain values or perspectives in relation to safety (Mulvenna et al, 2017;Cavoukian and Emam, 3 2010). Moreover, research on passive monitoring's impact on older adults' privacy and independence has not thoroughly drawn out the meanings associated with these values or why they matter to participants (Shankar, 2010).…”

Ethical by Design

“…In Boger et al [3], several principles relating to the development of assistive technologies from a transdisciplinary perspective, including complexity and holism, relationships, communication and transformation were explored but an ethical perspective was not within scope of that work. In Mulvenna et al [15], an ethical by design philosophy was discussed as an advance on the 'privacy by design' [19] approach in the specific area of video surveillance to seek to understand the views and attitudes of the people living with dementia and their caregivers in the design and configuration of video surveillance services in their homes, within a clearly defined ethical framework. This is a particularly useful case study where there is a clear trade-off between the significant utility of video cameras in the home of people living with dementia and the resultant impact on their privacy.…”

Surveillance Technology in Dementia Care: Implicit Assumptions and Unresolved Tensions

“…The authors themselves, however, used different terms throughout the article (e.g. surveillance, camera's, telecare, AT) [33]. Consequently, Tinker et al [34] in their paper on terminology argue that ST should be more explicitly defined in order to implement changes in Gerontechnology.…”