Balancing rights and risks: Conflicting perspectives in the management of wandering in dementia

Abstract

Current Government recommendations in England suggest a national approach to risk management but, in an increasingly litigious society, how do professional carers balance risk management with the promotion of a person-centred approach in dementia care? Wandering behaviour can be both beneficial and harmful to a person with dementia and generate considerable emotional distress in their carers. This study combined a systematic review and qualitative research methods to explore the perspectives of different stakeholders in the management of wandering in dementia. A major theme for carers was the conflict between the prevention of harm and the facilitation of a person's right to autonomy. Such tensions also impacted on carers' abilities to provide person-centred care. This dilemma was highlighted through the use of assistive technologies such as electronic tracking devices. Interestingly, people with dementia felt that the use of such technology placed them at greater risk, i.e. as a target to theft, than the process of wandering itself. They spoke of their need for independence and their concern over carer surveillance and the identity of 'big brother.' There is a need to develop practical tools for managing risk within dementia care which allow all perspectives to be captured and risk management to be negotiated.

Cooperation with Complex Research Protocols: The Use of Global Positioning Systems with Cognitively Impaired Elders – A Preliminary Report~!2010-03-02~!2010-06-12~!2010-08-12~!

“…Participants whose study partners were their spouses and were older were more likely to comply. This may reflect the spouses' encouragement for cooperation in the hope that electronic tracking would give them some peace of mind and eliminate future need to search for a lost relative [28].…”

A Review of Contemporary Work on the Ethics of Ambient Assisted Living Technologies for People with Dementia

“…Overprotection, paternalism, previous work habits, rigid application of protocols: Although care-givers are known for their general protective character and for trying to protect the remaining privacy of the elderly (Sponselee et al, 2008), cases of overprotection by care-givers have been reported (L. Robinson et al, 2007), which could be understood as a form of paternalism (Martin et al, 2010).…”

Ethics of the health-related internet of things: a narrative review

“…Autonomy is often discussed in terms of freedom and independence, particularly in reference to assistive technologies (Remmers 2010;Zwijsen et al 2011;Robinson et al 2007), smart homes (Remmers 2010; Townsend et al 2011;Brey 2005), and H-IoT embedded in residential care (Dorsten et al 2009;Zwijsen et al 2011). Generally speaking, the freedom of users may be impeded due to the presence of sensors or transmission of data generated by H-IoT devices.…”

“…The related concept of visibility refers to the degree to which a H-IoT device is noticeable to the user and others, both at home and in public (Robinson et al 2007;Landau et al 2010;Essén 2008;van Hoof et al 2011). Visibility is not equivalent to obtrusiveness.…”