The acceptability, adoption, and feasibility of a music application developed using participatory design for home-dwelling persons with dementia and their caregivers. The "Alight" app in the LIVE@Home.Path trial.

Background: Music interventions for persons with dementia can improve health and interaction with caregivers, yet the reach is often restricted to institutions. We describe the participatory design process of a prototype music application for patients affiliated with a gerontopsychiatric hospital and evaluate the acceptability, adoption, and feasibility of use for dyads of home-dwelling persons with dementia and their informal caregivers. Methods: The application "Alight" was developed following an iterative, expert-driven participatory design approach, which includes a requirement elicitation phase and two rounds of prototyping and testing in real-world settings. End users and stakeholders were involved in all steps, that is, workshops, interviews, field observation, ethnographic inquiries, and beta testing sessions with music therapists, patients, and caregivers in collaboration with a commercial music and technology company. The last prototyping and testing took place in the LIVE@Home.Path trial, a stepped-wedge multicomponent randomized controlled trial to improve resource utilization and caregiver burden in municipal dementia care during 2019-2021. Results: Mean age of the person with dementia in the LIVE@Home.Path trial was 82 years, 62% were female, and the majority had Alzheimer's dementia (44%) of mild severity (71%). Sixty-three dyads were offered Alight in the multicomponent intervention, of which 13% (n = 8) accepted use. The dyads accepting Alight did not differ in demographic and clinical characteristics compared to those not interested. The feasibility was high among those accepting Alight, 75% (n = 6) reported a positive impact on mood, 50% (n = 4) experienced a positive impact on activity, and 50% (n = 4) gooduser-friendliness. The adoption was high with daily use or use several times a week reported by 63% (n = 5). Obstacles emerged when updating the application in homes without wireless Wi-Fi, and some participants were unfamiliar with using touchscreens. Conclusion: The feasibility and adoption of the application were high and accepting dyads did not differ on demographic and clinical variables from those not reached. This suggests a high potential for utilization in dementia care. This study contributes methodologically to the field of participatory design and mHealth interventions by demonstrating a specific design approach that throughout the process successfully involved researchers, industry partners, health care practitioners, and end users. Clinical trial registration: ClinicalTrials.gov, NCT04043364.

Factors associated with access to assistive technology and telecare in home-dwelling people with dementia: baseline data from the LIVE@Home.Path trial.

BACKGROUND: There is a knowledge gap regarding factors that may influence the access to different devices for home-dwelling people with dementia (PwD). The aim of this study was to identify different assistive technology and telecare (ATT) devices installed in the home and key factors associated with access to such technology. METHODS: The baseline data came from the LIVE@Home.Path trial, a 24-month multi-component intervention including PwDs and their informal caregivers (dyads) and were collected through semi-quantitative questionnaires in three Norwegian municipalities between May and November of 2019. Regression models were applied to detect demographic and clinical factors associated with access to ATT. RESULTS: Of 438 screened dyads, 276 were included at baseline. The mean ages of the PwDs and caregivers were 82 ± 7.0 and 66 ± 12 years, respectively, and 62.8% of the PwD were female and 73.5% had access to any type of ATT. The majority had traditional equipment such as stove guards (43.3%) and social alarms (39.5%) or everyday technology, e.g. calendar support and door locks (45.3%). Multivariate regression analyses revealed that access to a social alarm was more often available for females than males, at increased age, and when the PwD lived alone, while tracking devices (14.9%) were more often accessible at lower age. Everyday technology was more often available for females, at increased age of the PwD and the caregiver, higher comorbidity, and poor IADL (instrumental activities of daily living) function. For PwDs with severe dementia, access to ATT was significantly associated with poor IADL function, having their children as the main caregiver (61.3%), and having caregivers who contributed 81-100% to their care (49.5%). CONCLUSIONS: Home-dwelling PwDs mainly had access to traditional and obligated devices, followed by everyday technology. There is unmet potential for communication, tracking, and sensing technology, especially for devices not offered by the municipalities. Gender, ages of the PwD and caregiver, cohabitation status, and physical function were the main associated factors for access to ATT. TRIAL REGISTRATION: ClinicalTrials.gov NCT04043364.

LIVE@Home.Path-innovating the clinical pathway for home-dwelling people with dementia and their caregivers: study protocol for a mixed-method, stepped-wedge, randomized controlled trial.

BACKGROUND: The global health challenge of dementia is exceptional in size, cost and impact. It is the only top ten cause of death that cannot be prevented, cured or substantially slowed, leaving disease management, caregiver support and service innovation as the main targets for reduction of disease burden. Institutionalization of persons with dementia is common in western countries, despite patients preferring to live longer at home, supported by caregivers. Such complex health challenges warrant multicomponent interventions thoroughly implemented in daily clinical practice. This article describes the rationale, development, feasibility testing and implementation process of the LIVE@Home.Path trial. METHODS: The LIVE@Home.Path trial is a 2-year, multicenter, mixed-method, stepped-wedge randomized controlled trial, aiming to include 315 dyads of home-dwelling people with dementia and their caregivers, recruited from 3 municipalities in Norway. The stepped-wedge randomization implies that all dyads receive the intervention, but the timing is determined by randomization. The control group constitutes the dyads waiting for the intervention. The multicomponent intervention was developed in collaboration with user-representatives, researchers and stakeholders to meet the requirements from the national Dementia Plan 2020. During the 6-month intervention period, the participants will be allocated to a municipal coordinator, the core feature of the intervention, responsible for regular contact with the dyads to facilitate L: Learning, I: Innovation, V: Volunteering and E: Empowerment (LIVE). The primary outcome is resource utilization. This is measured by the Resource Utilization in Dementia (RUD) instrument and the Relative Stress Scale (RSS), reflecting that resource utilization is more than the actual time required for caring but also how burdensome the task is experienced by the caregiver. DISCUSSION: We expect the implementation of LIVE to lead to a pathway for dementia treatment and care which is cost-effective, compared to treatment as usual, and will support high-quality independent living, at home. TRIAL REGISTRATION: ClinicalTrials.gov: NCT04043364. Registered on 15 March 2019.

Traumatic vs non-traumatic spinal cord injury: A comparison of primary rehabilitation outcomes and complications during hospitalization.

Objective: To compare outcome for patients with traumatic (TSCI) and non-traumatic spinal cord injuries (NTSCI) after primary rehabilitation regarding neurological improvement measured by the American Spinal Injury Association Impairment Scale (AIS), length of stay and complications.Design: Retrospective comparative cohort study on patients with TSCI and NTSCI, hospitalized during a ten-year period at Haukeland University Hospital, Norway. Impairment, length of stay and complications during first in-patient rehabilitation period were analyzed. Uni- and multivariate analysis was performed.Setting: Spinal Cord Rehabilitation Unit, Haukeland University Hospital, NorwayParticipants: A total of 174 persons with a spinal cord injury (SCI) were included; 102 with TSCI and 72 with NTSCI.Outcome measures: Neurological improvement measured by AIS from admission to discharge, number of weeks in the hospital, frequency and significance of complications were compared.Results: Improvement in AIS after primary rehabilitation did not differ between TSCI and NTSCI. Length of stay was in average 3.4 weeks longer for TSCI. Urinary tract infections and pressure ulcers significantly influenced length of stay in both groups. Urinary tract infections were more frequent in TSCI (67%) vs NTSCI (42%). Pressure ulcers were more frequent among NTSCI (24%) vs TSCI (14%). Pneumonia and neuropathic pain did not depend on etiology and did not influence length of stay.Conclusions: Patients with SCI have a rehabilitation potential regardless of etiology. Complications are frequent in both groups and often prolong hospitalization. Complication patterns differ in the two groups, and specific prevention and optimal treatment will shorten and optimize the length of primary rehabilitation.