Participatory Research to Design a Novel Telehealth System to Support the Night-Time Needs of People with Dementia: NOCTURNAL

Abstract

Strategies to support people living with dementia are broad in scope, proposing both pharmacological and non-pharmacological interventions as part of the care pathway. Assistive technologies form part of this offering as both stand-alone devices to support particular tasks and the more complex offering of the “smart home” to underpin ambient assisted living. This paper presents a technology-based system, which expands on the smart home architecture, orientated to support people with daily living. The system, NOCTURNAL, was developed by working directly with people who had dementia, and their carers using qualitative research methods. The research focused primarily on the nighttime needs of people living with dementia in real home settings. Eight people with dementia had the final prototype system installed for a three month evaluation at home. Disturbed sleep patterns, night-time wandering were a focus of this research not only in terms of detection by commercially available technology but also exploring if automated music, light and visual personalized photographs would be soothing to participants during the hours of darkness. The NOCTURNAL platform and associated services was informed by strong user engagement of people with dementia and the service providers who care for them. NOCTURNAL emerged as a holistic service offering a personalised therapeutic aspect with interactive capabilities.

More Than Talking

“…Participatory methods were used to involve people with dementia in hands-on processes including filmmaking (Capstick & Ludwin, 2015), writing and acting (Jenkins et al, 2016), diary keeping (Bartlett, 2012), design (Boman et al, 2014;Martin et al, 2013;van Hoof, Sprong, Marston, & Janssen, 2015), and autobiographical narrative production (Benbow & Kingston, 2014). In these studies, innovation was consistently demonstrated in both the hands-on processes and the methods used to explore them.…”

Sensing Technology to Monitor Behavioral and Psychological Symptoms and to Assess Treatment Response in People With Dementia. A Systematic Review

“…In a prodromal population, data from 8 of the studies suggest that motion data can also be useful in early detection of mild cognitive impairment and/or mild Alzheimer`s disease (Sacco et al, 2012;Hsu et al, 2014;Akl et al, 2015;Dodge et al, 2015;Gochoo et al, 2018;Zhou et al, 2018). While the majority of identified studies focused on the assessment of behaviors, we also identified 8 studies that developed intervention approaches based on sensor data or other feedback (Rowe et al, 2009;Aloulou et al, 2013;Martin et al, 2013;Hattink et al, 2016;Vahia et al, 2017;Khosla et al, 2017;Melander et al, 2018).…”

Effects of Assistive Home Technology on quality of life and falls of people with dementia and job satisfaction of caregivers: Results from a pilot randomized controlled trial

“…So far, the potential of technology solutions in long-term care settings has been recognized (Lynn et al, 2017;Martínez-Alcalá et al, 2016), and various positive outcomes have been found regarding, e.g. improvements of safety (Yayama et al, 2013), sense of security for residents (Margot-Cattin & Nygard, 2006), complementing staff observations (Yamakawa, Suto, Shigenobu, Kunimoto, & Makimoto, 2012), and promotion of independence (Martin et al, 2013). However, the need for more robust research has also been stressed (Fleming & Sum, 2014;Frisardi & Imbimbo, 2011;Lynn et al, 2017).…”