Surveillance Technology in Dementia Care: Implicit Assumptions and Unresolved Tensions

Abstract

This paper examines the concept of "Surveillance Technology [ST]" as it is used in ageing and dementia research but which suffers from poor definition. We attempt to clarify this imprecision by contextualising a brief history of the development of ST and provide a summary of the research in this area. We contrast this with the responses provided by a public and patient involvement group of people living with a dementia diagnosis, or experience of supporting people with dementia. ST operates in multiple interacting ways, all of which need to be taken into account in research, public and policy debate. As a technology it is often seen as a way of assisting individuals and therefore classified as an Assistive Technology [AT]. However, the meaning of ST used in dementia care has pragmatic implications beyond the meeting of the needs for "safety and independence"; ideas which is often used to justify its use. We argue that there is need to interrogate the terms "Surveillance" and "Technology" more carefully if ST is to be considered as empowering for people with dementia. This tension is brought out in the accounts present in a group discussion on ST and its use. This paper argues that there needs to be an acknowledgement that the purposes of such technologies need to be regularly reviewed in order for society to keep up with the rapidly changing pace of technology and the changing needs of users.

Requirements for Unobtrusive Monitoring to Support Home-Based Dementia Care: Qualitative Study Among Formal and Informal Caregivers

“…Extending previous work of others in the field that mainly included the views of healthy older adults [ 25 - 28 , 42 ], our study contributes to a better understanding of formal and informal caregivers’ expectations referring to the newest generation of AI-driven in-home monitoring systems, and what is needed from such systems to support home-based dementia care in an unobtrusive way. In that regard, our study provides a response to previous research that highlights the need for concrete requirements of monitoring systems in home-based dementia care [ 13 ], and argues that the purpose of such technologies needs to be regularly reviewed to keep up with their rapid development and the changing needs of users [ 43 ].…”

People with dementia and carers online discussing surveillance

“…There has been much discussion on the most appropriate terminology for such technology, and trackers have been classified variously as "information and communication technology", "assistive or enabling technology" or "surveillance technology". Although the word "surveillance" has negative connotations and ethical implications, it is an accurate descriptor of the monitoring products on sale, some of which are barely modified from their original form used for tracking dogs, children or prisoners (Vermeer et al, 2019a). The term "surveillance" also reflects the covert use of tracking products, for example on people with dementia who do not have the capacity to consent to the use of wearable devices and for whom a "best interest" decision is made to reduce the risks associated with unmonitored "wandering".…”

“…Technological solutions can challenge the self-determination and sense of freedom of the person with dementia (Boman et al, 2014). This is, however, a point of individual difference as some people with dementia find renewed freedom and independence in travel with the reassurance of knowing that they can, if needed, be located through an application on their smartwatch (Vermeer et al, 2019a).…”

“…Best practice guidance on technology and dementia has recently been made available from the European Union on www.dementiainduct.eu/guidance/ (INDUCT, 2019) with extensive recommendations for developers, designers, policy-makers, researchers and care-providers on how to design, implement and evaluate products. However, it is known that users of technology often take matters "into their own hands" to adapt, personalise and customise, for example through combining household items with technological devices (Greenhalgh et al, 2013;Gibson et al, 2019;Vermeer et al, 2019a). "Bricolage" highlights the creativity of individuals, the limitations of commercially available products and the potential for consumer to consumer sharing of experience and "know-how".…”

Selling surveillance technology: semiotic themes in advertisements for ageing in place with dementia

“…For example, STs such as Global Positioning Systems (GPS) and tracking devices can be used as a resilience tool to increase the safety and independence of people living with dementia (McCabe and Innes 2013). Notably, much debate covers the most appropriate terminology for such products as the word "surveillance" raises ethical implications and negative connotations, yet it does explain the products sold online (Vermeer et al 2019b;2019c).…”