A Tablet App– and Sensor-Based Assistive Technology Intervention for Informal Caregivers to Manage the Challenging Behavior of People With Dementia (the insideDEM Study): Protocol for a Feasibility Study

Abstract

BackgroundDespite the enormous number of assistive technologies (ATs) in dementia care, the management of challenging behavior (CB) of persons with dementia (PwD) by informal caregivers in home care is widely disregarded. The first-line strategy to manage CB is to support the understanding of the underlying causes of CB to formulate individualized nonpharmacological interventions. App- and sensor-based approaches combining multimodal sensors (actimetry and other modalities) and caregiver information are innovative ways to support the understanding of CB for family caregivers.ObjectiveThe main aim of this study is to describe the design of a feasibility study consisting of an outcome and a process evaluation of a newly developed app- and sensor-based intervention to manage CB of PwD for family caregivers at home.MethodsIn this feasibility study, we perform an outcome and a process evaluation with a pre-post descriptive design over an 8-week intervention period. The Medical Research Council framework guides the design of this feasibility study. The data on 20 dyads (primary caregiver and PwD) are gathered through standardized questionnaires, protocols, and log files as well as semistructured qualitative interviews. The outcome measures (neuropsychiatric inventory and Cohen-Mansfield agitation inventory) are analyzed by using descriptive statistics and statistical tests relevant to the individual assessments (eg, chi-square test and Wilcoxon signed-rank test). For the analysis of the process data, the Unified Theory of Acceptance and Use of Technology is used. Log files are analyzed by using descriptive statistics, protocols are analyzed by using documentary analysis, and semistructured interviews are analyzed deductively using content analysis.ResultsThe newly developed app- and sensor-based AT has been developed and was evaluated until July in 2018. The recruitment of dyads started in September 2017 and was concluded in March 2018. The data collection was completed at the end of July 2018.ConclusionsThis study presents the protocol of the first feasibility study to encompass an outcome and process evaluation to assess a complex app- and sensor-based AT combining multimodal actimetry sensors for informal caregivers to manage CB. The feasibility study will provide in-depth information about the study procedure and on how to optimize the design of the intervention and its delivery.International Registered Report Identifier (IRRID)DERR1-10.2196/11630

Access to and interest in assistive technology for home-dwelling people with dementia during the COVID-19 pandemic (PAN.DEM)

“…Our current review presents existing research on commercially available and prototype technologies that utilise wearable sensors, nonwearable motion sensor technologies, and assistive technologies/smart housing (Husebo et al, 2019). Different prognostic approaches at home may have the potential to inform clinicians about a range of patient responses, including alterations in circadian rhythm (Merilahti et al, 2016), changes in gait speed (Channa et al, 2020), falls (Silva de Lima et al, 2017), and monitoring behaviour such as agitation and wandering (Khan et al, 2018;Kernebeck et al, 2019;Bankole et al, 2020). Further, devices for better communication (on behalf of the PD_Manager consortium, 2018; Dorsey et al, 2020), ethical considerations of surveillance technology in dementia (Sorell & Draper, 2012), or the need for real-world, evidence-based solutions to conduct clinical trials (Teipel et al, 2018) are becoming potentially available.…”

Feasibility of a standard cognitive assessment in European academic memory clinics

“…For countries already using a local standard, it is necessary to provide conversion tables to translate scores 34 and ensure datasets compatibility (Figure 4). More general needed actions consist of, but are not limited to, feasibility analysis adopting cUDS to evaluate its implementation in real‐world settings (e.g., pilot studies), 24 the creation of a standard operating procedure, 13 and the development of digital tools to harmonize data entry, ultimately facilitating score computation, display, storage, and sharing 35 . In light of the cultural variability and the foreign patients’ assessment requests across EU regions, an additional step is to generate normative values in different languages.…”

“…We used the methodological framework Process Evaluation (PE), typically used to evaluate processes and outcomes of complex medical interventions, 18,23 also in the dementia field, 24,25 to guide our analysis of feasibility. PE uses mixed‐methods designs to capture information based on both theoretical assumptions and unbiased information from the context 18,26 …”

Lower activity linkage between caregivers and persons with neurodegenerative diseases is associated with greater caregiver anxiety

“…Conversely, if caregivers and PWNDs are largely separated, activity linkage and behavioral mimicry would presumably be lower and caregivers could experience greater anxiety as they worry about harm that might befall the unsupervised PWND. Given these possibilities, future research would benefit from collecting data about PWNDs' and caregivers' physical proximity (Arguello et al, 2018) and/or location in the home (e.g., whether they are in the same or different rooms; Kernebeck et al, 2019) to better understand the conditions under which activity linkage occurs..…”