The use of global positional satellite location in dementia: a feasibility study for a randomised controlled trial

Abstract

BackgroundGetting lost outside is stressful for people with dementia and their caregivers and a leading cause of long-term institutionalisation. Although Global Positional Satellite (GPS) location has been promoted to facilitate safe walking, reduce caregivers’ anxiety and enable people with dementia to remain at home, there is little high quality evidence about its acceptability, effectiveness or cost-effectiveness. This observational study explored the feasibility of recruiting and retaining participants, and the acceptability of outcome measures, to inform decisions about the feasibility of a randomised controlled trial (RCT).MethodsPeople with dementia who had been provided with GPS devices by local social-care services and their caregivers were invited to participate in this study. We undertook interviews with people with dementia, caregivers and professionals to explore the perceived utility and challenges of GPS location, and assessed quality of life (QoL) and mental health. We piloted three methods of calculating resource use: caregiver diary; bi-monthly telephone questionnaires; and interrogation of health and social care records. We asked caregivers to estimate the time spent searching if participants became lost before and whilst using GPS.ResultsTwenty people were offered GPS locations services by social-care services during the 8-month recruitment period. Of these, 14 agreed to be referred to the research team, 12 of these participated and provided data. Eight people with dementia and 12 caregivers were interviewed. Most participants and professionals were very positive about using GPS. Only one person completed a diary. Resource use, anxiety and depression and QoL questionnaires were considered difficult and were therefore declined by some on follow-up. Social care records were time consuming to search and contained many omissions. Caregivers estimated that GPS reduced searching time although the accuracy of this was not objectively verified.ConclusionsOur data suggest that a RCT will face challenges not least that widespread enthusiasm for GPS among social-care staff may challenge recruitment and its ready availability may risk contamination of controls. Potential primary outcomes of a RCT should not rely on caregivers’ recall or questionnaire completion. Time spent searching (if this could be accurately captured) and days until long-term admission are potentially suitable outcomes.

Reasons for nonparticipation in the Valuing Active Life in Dementia randomised controlled trial of a dyadic occupational therapy intervention: An interview study

“…Inconveniences have previously been cited as a significant barrier to participation in dementia trials. 5 , 14 – 21 It is accepted that not all expressions of interest in trials will convert into participants due to the time constraints inherent in caring. 29 However, it is possible that inconveniences were considered easier to talk about as reasons for declining than risk opening the ‘Pandora’s box’ of caring for a person with dementia.…”

“…12 These principles can restrict the reporting of why people decline. 13 Some reasons for declining psychosocial dementia trials are reported, either with the trial outcome 5 , 14 – 19 or when reflecting on recruitment issues. 20 , 21 These papers reported multifaceted reasons for declining, including time constraints, the wish to maintain normality, perceived insufficient value exchange, dissonance between dyad’s health and the study requirements, and protection of the person with dementia.…”

Using GPS Technologies with People with Dementia

“…These were intervention studies, which had 'safer walking' -defined as walking independently by managing perceived risks (Milne et al, 2014) -and wellbeing for the person with dementia and/or their spouse as outcome measures (Hettinga, Boer, Goldberg, & Moelaert, 2009); Olsson, Engström, Asenlöf, Skovdahl, & Lampic, 2014); Pot, Willemse, & Horjus, 2012;Rasquin, Williams, deVlieger, Geers, & Soede, 2007). Evidence suggests that physical harm is prevented because a person can be found more quickly when they are wearing a GPS device than when they are not wearing anything (Milne et al, 2014). One study compared a radio transmitter with GPS system and found the latter to be more reliable in providing a position as soon as it was requested (Bulat et al, 2016).…”

Using diffusion of innovation theory to describe perceptions of a passive positioning alarm among persons with mild dementia: a repeated interview study

“…In these contexts, use of a PPA would seem to be a way to promote the health and well-being of PwMDs (cf. [ 40 – 42 ]). The participants felt that the PPA gave them the ability to make immediate contact with their partner, which was seen as an important aspect of feeling safe.…”