The HOMESIDE Study-A Research Project to Support People Living With Dementia and Their Family Caregivers: Preliminary Report on Reading Intervention.

The behavioral and psychological symptoms of dementia (BPSD) can be challenging for family caregivers to cope with, leading to distress and fatigue. It is therefore important to offer effective strategies to reduce the impact of BPSD. The HOMESIDE randomized controlled trial (RCT) was testing purposefully developed interventions to improve the quality of life and wellbeing of dyads of people with dementia and family caregivers as a result of reduction of BPSD. HOMESIDE RCT was conducted in Australia, Germany, Norway, Poland and the United Kingdom between 2019 and 2022. The study design was a three-arm parallel-group single-blinded, pragmatic RCT with a sample size of 432 dyads. Dyads were randomly allocated to one of three treatment conditions: Music Intervention plus Standard Care; or Reading Intervention plus Standard Care; or Standard Care only. The Reading Intervention (RI) within the HOMESIDE RCT aimed to evoke shared discussion, reminiscence, meaningful shared experiences and consequently enrich everyday life, interaction and the emotional connection between the caregiver (CG) and carereceiver (CR); as well as to enhance activities of daily living and to promote relaxation or stimulation as appropriate. This paper describes the underlying conceptual framework, the content, and delivery of the Reading Intervention within the HOMESIDE RCT.

Home-based family caregiver-delivered music and reading interventions for people living with dementia (HOMESIDE trial): an international randomised controlled trial.

Background: Music interventions provided by qualified therapists within residential aged care are effective at attenuating behavioural and psychological symptoms (BPSD) of people with dementia (PwD). The impact of music interventions on dementia symptom management when provided by family caregivers is unclear. Methods: We implemented a community-based, large, pragmatic, international, superiority, single-masked randomised controlled trial to evaluate if caregiver-delivered music was superior to usual care alone (UC) on reducing BPSD of PwD measured by the Neuropsychiatric Inventory-Questionnaire (NPI-Q). The study included an active control (reading). People with dementia (NPI-Q score ≥6) and their caregiver (dyads) from one of five countries were randomly allocated to caregiver-delivered music, reading, or UC with a 1:1:1 allocation stratified by site. Caregivers received three online protocolised music or reading training sessions delivered by therapists and were recommended to provide five 30-min reading or music activities per week (minimum twice weekly) over 90-days. The NPI-Q severity assessment of PwD was completed online by masked assessors at baseline, 90- (primary) and 180-days post-randomisation and analysed on an intention-to-treat basis using a likelihood-based longitudinal data analysis model. ACTRN12618001799246; ClinicalTrials.govNCT03907748. Findings: Between 27th November 2019 and 7th July 2022, we randomised 432 eligible of 805 screened dyads (music n = 143, reading n = 144, UC n = 145). There was no statistical or clinically important difference in the change from baseline BPSD between caregiver-delivered music (-0.15, 95% CI -1.41 to 1.10, p = 0.81) or reading (-1.12, 95% CI -2.38 to 0.14, p = 0.082) and UC alone at 90-days. No related adverse events occurred. Interpretation: Our findings suggested that music interventions and reading interventions delivered by trained caregivers in community contexts do not decrease enduring BPSD symptoms. Funding: Our funding was provided by National Health and Medical Research Council, Australia; The Research Council of Norway; Federal Ministry of Education and Research, Germany; National Centre for Research and Development, Poland; Alzheimer's Society, UK, as part of the Joint Programme for Neurodegenerative Diseases consortia scheme.

The Influence of Home-Based Music Therapy Interventions on Relationship Quality in Couples Living with Dementia-An Adapted Convergent Mixed Methods Study.

Relationship quality is important for well-being and quality of life in couples living with dementia. Home-based music therapy interventions may be conducted with the aim of enhancing relationship quality. However, the effects or influences of such interventions are only briefly investigated in previous studies. This study's aim was to identify how a 12-week home-based music therapy intervention may influence relationship quality in couples living with dementia, through an adapted convergent mixed methods design. In this case, 68 participating couples from the HOMESIDE RCT study, and four individually recruited couples, received the music therapy intervention. Relationship quality for all participants was measured by the standardized Quality of Caregiver-Patient Relationship scale, and qualitative interviews were conducted with the four individually recruited participants at baseline and post intervention. Quantitative analysis indicated no statistically significant intervention effect. However, relationship quality remained stable over the intervention period. The qualitative analysis identified that the music therapy interventions primarily led to positive emotions, closeness, intimacy, and communication between the persons with dementia and their care partners. Intervention influences could also be ambiguous, as sharing music experiences might involve a risk of evoking vulnerabilities or negative emotional responses.

Influential factors of spousal relationship quality in couples living with dementia - A narrative synthesis systematic review.

AIM: The aim of this systematic review is to identify factors that influence relationship quality in couples living with dementia. Previous research has shown how maintaining a positive spousal relationship quality is important for quality of life and coping for both the caregiver and the person with dementia. Knowledge of influential factors could contribute to a deeper understanding of the value of a couple-centred clinical practice and research, within the field of dementia. RESEARCH DESIGN AND METHODS: Systematic procedures to database search, screening, data extraction and synthesis were followed. Qualitative, quantitative and mixed methods studies were included. A narrative synthesis was conducted through narrative summaries of included studies, thematic analysis and narrative descriptions of factors influencing relationship quality. RESULTS: 39 studies were included in the study: 28 qualitative, 8 quantitative and 3 mixed methods. Through the narrative synthesis, 20 factors were identified. The factors were grouped into two overarching themes: The world of us and The world outside of us, and further to six influencing factor categories: (1) Attitudes and strategies, (2) Behaviour and activities, (3) Emotional connectedness, (4) Activities and experiences outside of the home, (5) Social behaviour and roles, and (6) Belonging and safety. DISCUSSION AND CONCLUSION: The identified factors influence relationship quality in couples living with dementia on various levels. The findings of this review study should inform clinical, couple-centred dementia care practise and intervention studies, and further research should seek to gain deeper understandings of the individual factors and broader understandings of the correlations between factors.

The Neurophysiological Processing of Music in Children: A Systematic Review With Narrative Synthesis and Considerations for Clinical Practice in Music Therapy.

Introduction: Evidence supporting the use of music interventions to maximize arousal and awareness in adults presenting with a disorder of consciousness continues to grow. However, the brain of a child is not simply a small adult brain, and therefore adult theories are not directly translatable to the pediatric population. The present study aims to synthesize brain imaging data about the neural processing of music in children aged 0-18 years, to form a theoretical basis for music interventions with children presenting with a disorder of consciousness following acquired brain injury. Methods: We conducted a systematic review with narrative synthesis utilizing an adaptation of the methodology developed by Popay and colleagues. Following the development of the narrative that answered the central question "what does brain imaging data reveal about the receptive processing of music in children?", discussion was centered around the clinical implications of music therapy with children following acquired brain injury. Results: The narrative synthesis included 46 studies that utilized EEG, MEG, fMRI, and fNIRS scanning techniques in children aged 0-18 years. From birth, musical stimuli elicit distinct but immature electrical responses, with components of the auditory evoked response having longer latencies and variable amplitudes compared to their adult counterparts. Hemodynamic responses are observed throughout cortical and subcortical structures however cortical immaturity impacts musical processing and the localization of function in infants and young children. The processing of complex musical stimuli continues to mature into late adolescence. Conclusion: While the ability to process fundamental musical elements is present from birth, infants and children process music more slowly and utilize different cortical areas compared to adults. Brain injury in childhood occurs in a period of rapid development and the ability to process music following brain injury will likely depend on pre-morbid musical processing. Further, a significant brain injury may disrupt the developmental trajectory of complex music processing. However, complex music processing may emerge earlier than comparative language processing, and occur throughout a more global circuitry.

Exploring self-concept, wellbeing and distress in therapeutic songwriting participants following acquired brain injury: A case series analysis.

Acquired brain injury (ABI) presents a significant threat to sense of self and necessitates a complex process of psychosocial adjustment. Self-concept changes remain understudied in the early stages of inpatient rehabilitation. The aim of the current study was to examine changes in self-concept, distress, wellbeing and functional skills for five inpatients undertaking a music therapy intervention within a subacute rehabilitation centre in Victoria, Australia. Participants completed a six-week, 12-session therapeutic songwriting programme to produce past-, current- and future-self-focused songs. A range of self-concept, subjective wellbeing and distress measures were completed pre-, mid- and post-intervention. A descriptive case series approach was applied to determine trends in pre-post scores for five individual cases. Participants showing the greatest gains across self-concept and subjective wellbeing indices also showed the greatest functional gains on the Functional Independence Measure (FIM) from admission to discharge. The current study highlights the importance of examining early changes in self-concept, wellbeing and distress in subacute rehabilitation, and suggests that individualised songwriting programmes warrant further research attention in neurological populations.

HOMESIDE: home-based family caregiver-delivered music and reading interventions for people living with dementia: protocol of a randomised controlled trial.

INTRODUCTION: Pharmacological interventions to address behavioural and psychological symptoms of dementia (BPSD) can have undesirable side effects, therefore non-pharmacological approaches to managing symptoms may be preferable. Past studies show that music therapy can reduce BPSD, and other studies have explored how formal caregivers use music in their caring roles. However, no randomised study has examined the effects on BPSD of music interventions delivered by informal caregivers (CGs) in the home setting. Our project aims to address the need for improved informal care by training cohabiting family CGs to implement music interventions that target BPSD, and the quality of life (QoL) and well-being of people with dementia (PwD) and CGs. METHODS AND ANALYSIS: A large international three-arm parallel-group randomised controlled trial will recruit a sample of 495 dyads from Australia, Germany, UK, Poland and Norway. Dyads will be randomised equally to standard care (SC), a home-based music programme plus SC, or a home-based reading programme plus SC for 12 weeks. The primary outcome is BPSD of PwD (measured using the Neuropsychiatric Inventory-Questionnaire). Secondary outcomes will examine relationship quality between CG and PwD, depression, resilience, competence, QoL for CG and QoL for PwD. Outcomes will be collected at baseline, at the end of the 12-week intervention and at 6 months post randomisation. Resource Utilisation in Dementia will be used to collect economic data across the life of the intervention and at 6-month follow-up. We hypothesise that the music programme plus SC will generate better results than SC alone (primary comparison) and the reading programme plus SC (secondary comparison). ETHICS AND DISSEMINATION: Ethical approval has been obtained for all countries. Results will be presented at national and international conferences and published in scientific journals and disseminated to consumer and caregiver representatives and the community. TRIAL REGISTRATION NUMBERS: ACTRN12618001799246p; NCT03907748.

Music Interventions for Dementia and Depression in ELderly care (MIDDEL): protocol and statistical analysis plan for a multinational cluster-randomised trial.

INTRODUCTION: In older adults, dementia and depression are associated with individual distress and high societal costs. Music interventions such as group music therapy (GMT) and recreational choir singing (RCS) have shown promising effects, but their comparative effectiveness across clinical subgroups is unknown. This trial aims to determine effectiveness of GMT, RCS and their combination for care home residents and to examine heterogeneity of treatment effects across subgroups. METHODS AND ANALYSIS: This large, pragmatic, multinational cluster-randomised controlled trial with a 2×2 factorial design will compare the effects of GMT, RCS, both or neither, for care home residents aged 65 years or older with dementia and depressive symptoms. We will randomise 100 care home units with ≥1000 residents in total across eight countries. Each intervention will be offered for 6 months (3 months 2 times/week followed by 3 months 1 time/week), with extension allowed if locally available. The primary outcome will be the change in the Montgomery-Åsberg Depression Rating Scale score at 6 months. Secondary outcomes will include depressive symptoms, cognitive functioning, neuropsychiatric symptoms, psychotropic drug use, caregiver burden, quality of life, mortality and costs over at least 12 months. The study has 90% power to detect main effects and is also powered to determine interaction effects with gender, severity and socioeconomic status. ETHICS AND DISSEMINATION: Ethical approval has been obtained for one country and will be obtained for all countries. Results will be presented at national and international conferences and published in scientific journals. TRIAL REGISTRATION NUMBERS: NCT03496675; Pre-results, ACTRN12618000156280.

Indirect Music Therapy Practice and Skill-Sharing in Dementia Care.

Public interest in the benefits of music for people with dementia has rapidly increased in recent years. In addition to clinical work with clients, music therapists are often required to support and train staff, families, and volunteers and skill-share some music therapeutic skills. Six music therapy researchers from six countries agreed it was timely to organize a roundtable and share their indirect music therapy practice and examples of skill-sharing in dementia care. This article was developed following the roundtable at the World Congress of Music Therapy in 2017 and further discussion among the authors. This process highlighted the diversity and complexity of indirect music therapy practice and skill-sharing, but some common components emerged, including: 1) the importance of making clinical decisions about when direct music therapy is necessary and when indirect music therapy is appropriate, 2) supporting the transition from direct music therapy to indirect music therapy, 3) the value of music therapy skill-sharing in training care home staff, 4) the need for considering potential risks and burdens of indirect music therapy practice, and 5) expanding the role of music therapist and cultivating cross-professional dialogues to support organizational changes. In indirect music therapy practice, a therapist typically works with carers and supporters to strengthen their relationships with people with dementia and help them further develop their self-awareness and sense of competence. However, the ultimate goal of indirect music therapy practice in dementia care remains the wellbeing of people living with dementia.

Personal identity narratives of therapeutic songwriting participants following Spinal Cord Injury: A case series analysis.

CONTEXT/OBJECTIVE: Spinal Cord Injury (SCI) patients face unique identity challenges associated with physical limitations, higher comorbid depression, increased suicidality and reduced subjective well-being. Post-injury identity is often unaddressed in subacute rehabilitation environments where critical physical and functional rehabilitation goals are prioritized. Therapeutic songwriting has demonstrated prior efficacy in promoting healthy adjustment and as a means of expression for post-injury narratives. The current study sought to examine the identity narratives of therapeutic songwriting participants. DESIGN: Case-series analysis of the individual identity trajectories of eight individuals. SETTING: Subacute rehabilitation facility, Victoria, Australia. PARTICIPANTS: Eight individuals with an SCI; 7 males and 1 female. INTERVENTION: Six-week therapeutic songwriting intervention facilitated by a music therapist to promote identity rehabilitation. OUTCOME MEASURES: Identity, subjective well-being and distress, emotional state. RESULTS: Three participants demonstrated positive trajectories and a further three showed negative trajectories; remaining participants were ambiguous in their response. Injury severity differentiated those with positive trajectories from those with negative trajectories, with greater injury severity apparent for those showing negative trends. Self-concept also improved more in those with positive trajectories. Core demographic variables did not however meaningfully predict the direction of change in core identity or wellbeing indices. CONCLUSION: Identity-focused songwriting holds promise as a means of promoting healthy identity reintegration. Further research on benefits for those with less severe spinal injuries is warranted.

Flow and Meaningfulness as Mechanisms of Change in Self-Concept and Well-Being Following a Songwriting Intervention for People in the Early Phase of Neurorehabilitation.

Anecdotal evidence suggests that songwriting assists people with spinal cord injury (SCI) or acquired brain injury (ABI) to explore threats to self-concept, yet studies that explore the mechanisms of change have not been reported. In a pilot study, we explored the correlations between changes in self-concept and well-being, with mechanisms of flow and meaningfulness of songwriting. Five people with ABI (all male) and 5 SCI (4 males, 1 female) (mean age 38.90 years, SD = 13.21), with an average 3 months post-injury, participated in a 12-session songwriting program that targeted examination of self-concept. Measures of self-concept, depression, anxiety, emotion regulation, affect, satisfaction with life, and flourishing were collected pre-, mid-, and post-intervention, and compared with repeated measures of flow and meaningfulness of songwriting. Medium effects were found for changes in self-concept (d = 0.557) and depression (d = 0.682) and approached a medium effect for negative affect (d = 0.491). Improvements in self-concept over time were associated with decreases in depression (r p = -0.874, n = 9, p < 0.01), anxiety (r p = -0.866, n = 9, p < 0.01), and negative affect (r p = -0.694, n = 10, p < 0.05), and an increase in flourishing (r p = +0.866, n = 9, p < 0.01) and positive affect (r p = + 0.731, n = 10, p < 0.05). Strong experiences of flow were not positively correlated with positive changes to self-concept and well-being, whereas deriving high levels of meaning were associated with increased negative affect (r p = +0.68 p < 0.05), increased anxiety (r p = +0.74, p < 0.05), and reduced emotional suppression (r p = -0.58, p < 0.05). These findings show that the targeted songwriting intervention appears to be positively associated with enhanced well-being outcomes. However, the findings also suggest that people who find the songwriting process has strong meaning for them might be more likely to start accepting their emotions and as a result experience an increase in anxiety and depression, although full, mediated regression analyses with larger sample sizes are required to explore this further. Acknowledging their changed circumstances may nonetheless assist people with SCI and ABI to grieve their losses and facilitate the building of a healthy post-injured self-concept. We propose that there may be other mechanisms more critical in facilitating the positive changes in self-concept and well-being than flow and meaning, such as the role of story-telling and the impact of music in facilitating the consolidation of self-concept explorations in memory.