Extended safety and support systems for people with dementia living at home

Abstract

Purpose – The purpose of this paper is to highlight the complexity surrounding the implementation of advanced electronic tracking, communication and emergency response technologies, namely, an extended safety and support (ESS) system for people with dementia (pwd) living at home. Results are presented from a Swedish demonstration study (2011-2012) conducted in 24 municipalities. Design/methodology/approach – It is a descriptive intervention study with a pre-post test design. Questionnaires were administered to pwd, carers and professionals at the outset and eight months later. ESS logging data were analyzed. Findings – ESS usage rates varied widely. A total of 650 alerts were triggered, mainly when the pwd was outdoors. Activities were reduced amongst pwd, most likely due to a progression of their disease. Carers noted that pwd were more independent than previously on those occasions when they engaged in outdoor activities. Staff considered that nearly half of pwd could remain living at home due to the ESS, compared with a third amongst carers. In total, 50 per cent of carers felt it was justified to equip their relative with an ESS without their explicit consent, compared to one in eight staff. Research limitations/implications – A limitation is the amount of missing data and high drop- out rates. Researchers should recruit pwd earlier in their illness trajectory. A mixed-methods approach to data collection is advisable. Practical implications – Carers played a crucial role in the adoption of ESS. Staff training/supervision about assistive devices and services is recommended. Social implications – Overall, use of ESS for pwd living at home was not an ethical problem. Originality/value – The study included key stakeholder groups and a detailed ethical analysis was conducted.