RESUMEN
Background: The number of people living with dementia (PwD) worldwide is expected to double every 20 years. Many continue living at home, receiving support from family caregivers who may experience significant stress, simultaneously to that of the PwD. Meaningful and effective home-based interventions to support PwD and their caregivers are needed. The development of a theory- and practice-driven online home-based music intervention (MI) is delivered by credentialed music therapists, nested within the HOMESIDE RCT trial. Methods: Dyads including the PwD and their family carer are randomised to MI, reading (RI) or standard care (SC). MI aims to support health wellbeing and quality of life by training caregivers to intentionally use music (singing, instrument playing, movement/dancing, and music listening) with their family member (PwD) in daily routines. MI is underpinned by cognitive, relational, social, and psychological theories of mechanisms of change. Results: Preliminary sub-cohort results analyses show MI can be delivered and is accepted well by participants and music-therapist interventionists across five countries. Conclusions: The specialist skills of a music therapist through MI enable carers to access music when music therapists are not present, to meet carer and PwD needs. Music therapists embrace this changing professional role, observing therapeutic change for members of the dyads.
RESUMEN
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.