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.

Observing Music Therapy in Dementia: Repeated Single-case Studies Assessing Well-being and Sociable Interaction.

OBJECTIVES: This study compared behavioral expressions of momentary well-being and sociable behavior toward significant others during music therapy and regular social interaction. METHODS: A 10-week active music therapy intervention was provided for people living with dementia and family caregivers. A bi-phasic AB single-case design was replicated for three sessions per dyad and coded using the Observable Well-being in Living with Dementia-Scale (OWLS) and the Verbal and Nonverbal Sociable Interaction Scale-Care Receiver (VNVIS-CR). Effect sizes (Log Response Ratio) were calculated for each session and analyzed with robust cluster meta-analysis. RESULTS: Eleven dyads were included, and 32 sessions analyzed (2102 observations). Within sessions we found a 48% increase in well-being, and a 32% increase in sociable interaction during music therapy. Heterogeneity was high. Dementia severity predicted an increase in nonverbal sociable interaction (93% for moderate dementia). Depression and time did not predict any change. CONCLUSION: The potential of music therapy to increase well-being and sociable interactions toward significant others calls for further investigation of heterogeneity and covariates. Single-case designs are demonstrated to be feasible for these investigations. CLINICAL IMPLICATIONS: Preference-based music therapy may alleviate some of the individual and relational consequences of living with dementia, facilitating positive emotions and connection to significant others.

Assessing Momentary Well-Being in People Living With Dementia: A Systematic Review of Observational Instruments.

Optimizing the possibility to lead good lives is at the core of treatment and care for people with dementia. This may be monitored by assessing well-being and quality of life. However, cognitive impairment following dementia may complicate recall-based assessment with questionnaires, and proxy-ratings from family-caregivers do not correspond well to self-reports. Thus, using observational measures represents a potentially advanced option. Systematic reviews evaluating measurement properties, interpretability and feasibility of observational instruments assessing well-being in people living with dementia are lacking. Thus, this review performed systematic searches to find peer reviewed validated instruments of relevance in the databases MEDLINE, EMBASE, PsycINFO, Web of Science, CINAHL and ProQuest. Twenty-two instruments assessing well-being were included for evaluation of measurement properties based on the systematic approach of the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN). The evaluation included risk of bias on study level, and assessment of measurement properties on instrument level including content validity, construct validity, structural validity, internal consistency, measurement invariance, cross-cultural validity, measurement error and inter-rater/intra-rater/test-retest reliability and responsiveness. Additionally, the feasibility and interpretability of the measures were evaluated. No single instrument could be recommended based on existing publications. Thus, we provide general recommendations about further assessment and development of these instruments. Finally, we describe the most promising instruments and offer guidance with respect to their implementation and use in clinical and research contexts.