A mixed methods evaluation of the music and psychology and social connections (MAPS) pilot - A dyadic intervention for couples affected by young-onset dementia.

INTRODUCTION: People living with young-onset dementia and their care-partners are at risk of a range of adverse mental health outcomes and social isolation. There are few interventions aimed at supporting couples affected by young-onset dementia, which poses unique psychosocial challenges for younger people. METHODOLOGY: This pre-post interventional mixed methods pilot study aimed to assess the feasibility and acceptability of an online group program for people with young-onset dementia and their care-partners living at home in Australia. The Music And Psychology and Social connections (MAPS) program aimed to address: (1) the challenges and changes associated with young-onset dementia; and (2) coping and wellbeing. The program involved six weekly two-hour sessions co-facilitated by a psychologist and music therapist, and a private Facebook group. The primary outcomes of feasibility and acceptability were assessed through a post-program focus group, separate individual feedback sessions with each couple, and a program evaluation questionnaire. Thematic analysis was conducted on the focus group transcripts and field notes from couple feedback sessions. We also examined the preliminary utility of MAPS in improving mental health and social connectedness, using quantitative pre-post-measures. RESULTS: Five couples completed the MAPS program. The most common dementia type was Alzheimer's Disease. Participant attendance was 87% across all sessions. Qualitative findings supported acceptability of the program with four emergent themes: being connected to others with shared experiences; reframing thoughts and feelings about dementia; music as a therapeutic tool; and benefits of MAPS. CONCLUSION: The high retention rate, qualitative findings and positive program evaluation suggest MAPS may be a promising, feasible and acceptable program for couples affected by young-onset dementia.

The experiences of people living with dementia and their care partners participating in an online therapeutic songwriting program.

BACKGROUND AND AIM: Despite the impact of dementia on close care relationships, accessible therapeutic services for people living with dementia and their care partners remain scarce. Further, there is an increasing demand for online services, highlighting the need for ongoing telehealth research. This study aimed to explore the experiences of people living with dementia and their informal and formal care partners following participation in a 10-week online therapeutic songwriting program. METHODS: The songwriting program included four duo and six group sessions facilitated by a music therapist. Post-program semi-structured interviews were analysed using thematic analysis. FINDINGS: Nine people with dementia and six care partners (nine duos) participated in the program. Five duos were in spousal relationships and four people with dementia participated with a formal care partner. Participants attended an average of four duo sessions and three group sessions. Six people with dementia and five care partners participated in post-program interviews. Four themes were developed: (1) No one else does this; (2) It's all about us as people; (3) After the sessions we'd come out buzzing; and (4) The journey was as important as the product. CONCLUSIONS: Participants highlighted songwriting as a unique opportunity to connect with music, experience welcomed challenges, and spend 'real time' together. The program drew on participants' lived experience and promoted connection with others, resulting in feelings of enjoyment, enhanced mood, and achievement. Participants valued both the songwriting process and song product, emphasising the importance of sensitive and skilful facilitation. Our findings suggest that these distinct benefits were not available through other support services. Further, online songwriting is a viable option for people living with dementia and their care partners where in-person sessions are not available or accessible.

Content development and validation for a mobile application designed to train family caregivers in the use of music to support care of people living with dementia.

Background: Music therapy is increasingly recognized as an effective support for people living with dementia. However, with incidences of dementia increasing, and limited availability of music therapists, there is a need for affordable and accessible ways that caregivers can learn to use music-therapy based strategies to support the people they care for. The MATCH project aims to address this by creating a mobile application that can train family caregivers in the use of music to support people living with dementia. Methods: This study details the development and validation of training material for the MATCH mobile application. Training modules developed based on existing research were assessed by 10 experienced music therapist clinician-researchers, and seven family caregivers who had previously completed personalized training in music therapy strategies via the HOMESIDE project. Participants reviewed the content and scored each training module based on content (music therapists) and face (caregivers) validity scales. Descriptive statistics were used to calculate scores on the scales, while thematic analysis was used to analyze short-answer feedback. Results: Participants scored the content as valid and relevant, however, they provided additional suggestions for improvement via short-answer feedback. Conclusion: The content developed for the MATCH application is valid and will be trailed by family caregivers and people living with dementia in a future study.

Clinical effectiveness of music interventions for dementia and depression in elderly care (MIDDEL): Australian cohort of an international pragmatic cluster-randomised controlled trial.

BACKGROUND: Dementia and depression are highly prevalent and comorbid conditions among older adults living in care homes and are associated with individual distress and rising societal costs. Effective, scalable, and feasible interventions are needed. Music interventions have shown promising effects, but the current evidence base is inconclusive. The present study aimed to determine the effectiveness of two different music interventions on the depressive symptoms of people with dementia living in residential aged care. METHODS: We implemented a 2 × 2 factorial cluster-randomised controlled trial to determine whether group music therapy (GMT) is more effective than no GMT with standard care, or recreational choir singing (RCS) is more effective than no RCS with standard care, for reducing depressive symptoms and other secondary outcomes in people with dementia with mild to severe depressive symptoms living in residential aged care. Care home units with at least ten residents were allocated to GMT, RCS, GMT plus RCS, or standard care, using a computer-generated list with block randomisation (block size four). The protocolised interventions were delivered by music therapists (GMT) and community musicians (RCS). The primary outcome was Montgomery-Åsberg Depression Rating Scale score at 6 months, assessed by a masked assessor and analysed on an intention-to-treat basis using linear mixed-effects models, which examined the effects of GMT versus no-GMT and RCS versus no-RCS, as well as interaction effects of GMT and RCS. We report on the Australian cohort of an international trial. This trial is registered with ClinicalTrials.gov, NCT03496675, and anzctr.org.au, ACTRN12618000156280. FINDINGS: Between June 15, 2018, and Feb 18, 2020, we approached 12 RAC facilities with 26 eligible care home units and, excluding six units who could not be enrolled due to COVID-19 lockdowns, we screened 818 residents. Between July 18, 2018, and Nov 26, 2019, 20 care home units were randomised (318 residents). Recruitment ceased on March 17, 2020, due to COVID-19. The primary endpoint, available from 20 care home units (214 residents), suggested beneficial effects of RCS (mean difference -4·25, 95% CI -7·89 to -0·62; p=0·0221) but not GMT (mean difference -0·44, -4·32 to 3·43; p=0·8224). No related serious adverse events occurred. INTERPRETATION: Our study supports implementing recreational choir singing as a clinically relevant therapeutic intervention in reducing depressive symptoms for people with dementia in the Australian care home context. FUNDING: National Health and Medical Research Council, Australia.

Demographic and clinical profile of residents living with dementia and depressive symptoms in Australian private residential aged care: Data from the Music Interventions for Dementia and Depression in ELderly care (MIDDEL) cluster-randomised controlled trial.

OBJECTIVES: 1) To describe the demographic and clinical characteristics of residents with dementia and depressive symptoms in the Australian private residential aged care (RAC) context; and 2) to investigate the association between neuropsychiatric symptoms, depression and quality of life and their interactions with dementia severity. METHODS: This study examined the baseline demographic and clinical data from the Australian arm of the Music Interventions for Dementia and Depression in ELderly care (MIDDEL) study, a multinational, cluster-randomised controlled trial. Demographic characteristics, neuropsychiatric symptoms, depression, quality of life and dementia severity were collected in 330 residents of 12 private RAC facilities across Melbourne, Australia. Descriptive statistics, the Kruskal-Wallis test and the Pearson Χ2 test were used to describe and compare the demographic and clinical characteristics according to dementia severity. The association between clinical characteristics and dementia severity was examined using linear regression analyses. RESULTS: Residents' mean age was 86.5 years, 69% were female, and 44.2% had severe dementia. There were no significant differences between the dementia severity groups on age, sex and education. Residents with severe dementia were more likely to have a diagnosis of Alzheimer's disease (40.3%) and be born overseas (46.8%). Higher levels of neuropsychiatric symptoms, distress and depressive symptoms, and lower quality of life were associated with more severe dementia. CONCLUSIONS: The findings from our study highlight the diverse and complex care needs of people living with dementia in the Australian private RAC setting, which can be used to inform targeted, person-centred dementia care planning, staff training and allocation of resources.

Music and Psychology & Social Connections Program: Protocol for a Novel Intervention for Dyads Affected by Younger-Onset Dementia.

Psychosocial interventions targeting the specific needs of people affected by younger-onset dementia are lacking. Younger-onset dementia refers to dementia where symptom onset occurs at less than 65 years old. Because of its occurrence in middle age, the impact on spouses is particularly marked and dyadic-based interventions are recommended. Music And Psychology & Social Connections (MAPS) is a novel online intervention, informed by the theory of adaptive coping by Bannon et al. (2021) for dyads affected by younger-onset dementia. MAPS combines therapeutic songwriting, cognitive behaviour therapy, and a private social networking group that focuses on the dyads. This will be a randomised controlled trial with a waitlist control. The primary aims are to assess whether MAPS improves depressive, anxiety, and stress symptoms in caregivers, with secondary aims to assess whether MAPS improves depressive symptoms in people with younger-onset dementia. The trial also aims to assess dyadic social connectedness; caregiver coping skills; and neuropsychiatric symptoms in people with younger-onset dementia. We will recruit 60 dyads to participate in a group-based weekly online program for 8 weeks facilitated by a credentialed music therapist and psychologist. Sessions 1 and 8 will include both caregivers and people with younger-onset dementia and Sessions 2-7 will involve separate group sessions for caregivers and those with dementia. There will be focus groups for qualitative feedback. Due to its online administration, MAPS has the potential to reach many dyads affected by younger-onset dementia.

Therapeutic music interventions with people with dementia living in residential aged care: Perspectives of residents, family members and care home staff from a cluster randomised controlled trial.

BACKGROUND: Despite growing support for the benefits of music interventions in dementia care, the perspectives of people with dementia, their families and carers are often missing from the research. This study explored multiple perspectives and first-person experiences of group music interventions delivered within a large cluster randomised controlled trial examining the effectiveness of group music therapy (GMT) and recreational choir singing (RCS) with people with dementia living in residential-aged care (RAC) settings. METHODS: Focus group and individual interviews with residents with dementia (n = 4), family members (n = 5) and care home staff (n = 15) were conducted following completion of the 6-month GMT and/or RCS intervention and analysed using inductive thematic analysis. FINDINGS: Three main themes were identified as follows: (1) direct and indirect intrapersonal benefits, (2) direct and indirect interpersonal benefits and (3) therapeutic music interventions versus entertainment. GMT and RCS supported residents' mood, enjoyment, engagement and connectedness to self and others within and post-sessions, with flow-on effects to family members, care staff and the care home environment. Participants differentiated GMT and RCS from other forms of music engagement in the RAC facilities and described feelings of post-programme loss, highlighting ongoing meaning in active therapeutic music interventions. CONCLUSION: This research highlights the need for increased access to sustainable and meaningful activities, such as purposefully designed therapeutic music interventions in RAC. Improving knowledge about the distinct benefits of therapeutic music interventions compared with other forms of music engagement in RAC may assist nursing staff to make appropriate treatment planning decisions regarding therapeutic music programmes to meet the complex needs of residents with dementia.

"Doing Things Together Is What It's About": An Interpretative Phenomenological Analysis of the Experience of Group Therapeutic Songwriting From the Perspectives of People With Dementia and Their Family Caregivers.

BACKGROUND: The wellbeing of people living with dementia and their family caregivers may be impacted by stigma, changing roles, and limited access to meaningful opportunities as a dyad. Group therapeutic songwriting (TSW) and qualitative interviews have been utilized in music therapy research to promote the voices of people with dementia and family caregivers participating in separate songwriting groups but not together as dyads. PROCEDURES: This study aimed to explore how ten people with dementia/family caregiver dyads experienced a 6-week group TSW program. Dyads participated in homogenous TSW groups involving 2-4 dyads who were either living together in the community (2 spousal groups) or living separately because the person with dementia resided in a care home (1 family group, 1 spousal group). The TSW program, informed by personhood, couplehood, family centered and group process frameworks, involved creating original lyrics through song parody and song collage. Qualified Music Therapists facilitated sessions and interviewed each dyad separately. Interviews were analyzed using interpretative phenomenological analysis. FINDINGS: Five recurrent group themes were developed, indicating group TSW: (1) was a positive shared experience, benefiting both members of the dyad and motivating further engagement with music; (2) stimulated mental processes and reignited participants' interests and skills; (3) provided meaningful opportunities for reflection and connection with memories and life experiences; and (4) prompted interaction and collaboration, leading to social connections, empathic relationships and experiences of inclusion. Participants also highlighted how: (5) the facilitated process supported engagement, highlighting abilities and challenging doubts. CONCLUSION: Dyads identified group TSW as an opportunity to recognize strengths, voice ideas and opinions, share meaningful experiences, and do "more with music." Participants valued TSW as a new, creative and stimulating experience that enabled connection with self and others and led to feelings of pride and achievement. Our findings further recognize how therapeutic intention and approach were reflected in participants' engagement and responses regardless of dementia stage and type, dyad relationship, or musical background. This research may broaden perspectives and expand understanding about how people with dementia and their family caregivers access and engage in music therapy.

Resource assessment in trials undertaken in residential care homes: Experiences from the Australian MIDDEL cluster randomised controlled trial research team.

BACKGROUND: The resources involved in delivering a clinical trial in residential aged care facilities (RACFs) are significant and the success of a trial is dependent upon adequate planning, including appropriate timelines for each component of the study and the required budget. This paper describes process and resource assessment during recruitment, collection of outcome measures and intervention delivery, and presents learnings and considerations for conducting trials in RACFs with people living with dementia. METHODS: Data were collected across 24 clusters in 12 RACFs over 18 months during a cluster randomised controlled trial which was testing the effectiveness of music interventions in people living with dementia. Data were collected on resources required for recruitment and assessment of baseline data, as well as reasons for participant non-attendance at the interventions. RESULTS: Time between contacting next of kin and receiving formal consent often exceeded 45 days. The ratio of time between direct and indirect research activity was approximately 1:2. Participant intervention adherence is at risk from unplanned RACF lockdowns and reasons for non-attendance include those both related directly to the participant and to staff resources, scheduling or other practical considerations. CONCLUSIONS: Research planning should focus on building relationships with RACF staff and resident families, factor in adequate time for recruitment in the study timeline and consider budgeting for backfill of RACF staff during data collection phases to expedite the process and ensure adherence to study protocol timelines. TRIAL REGISTRATION AUSTRALIAN AND NEW ZEALAND CLINICAL TRIAL REGISTRY ANZCTR12618000156280 1/02/2018 HTTP//ANZCTRORGAU/TRIAL/REGISTRATION/TRIALREVIEWASPX?ACTRN=12618000156280: A.

"It's Feasible to Write a Song": A Feasibility Study Examining Group Therapeutic Songwriting for People Living With Dementia and Their Family Caregivers.

BACKGROUND: Psychosocial interventions for people with dementia and their family caregivers together may sustain relationship quality and social connection. No previous music therapy research has examined the effects of group therapeutic songwriting (TSW) attended by people with dementia/family caregiver dyads. METHODS: This pre-post feasibility study aimed to examine the acceptability of a group TSW intervention for people with dementia/family caregiver dyads and test the sensitivity of the following outcomes: Quality of the Caregiver-Patient Relationship (QCPR, primary); Cornell Scale for Depression in Dementia (CSDD) and Quality of Life-Alzheimer's Dementia for people with dementia, Patient Health Questionnaire-9, Assessment of Quality of Life-8 Dimensions (AQoL-8D); and Zarit Burden Interview for family caregivers. Six weekly 1 h sessions guided participants to identify preferred music, brainstorm ideas, create lyrics, and record songs. Qualitative interviews were conducted with dyads who completed the intervention. RESULTS: Fourteen dyads were recruited and completed baseline assessments. Participants with dementia were aged 62-92 years (M = 77, SD = 11). Caregiver participants (11 spouses, two daughters, one son) were aged 54-92 years (M = 67, SD = 10.1). Four dyads withdrew owing to declining health or inconvenience before the program commenced (n = 2) and after attending 1-2 sessions (n = 2). Ten dyads formed four homogeneous TSW groups (71% completion). No statistically significant changes were detected for any measure. High QCPR ratings at baseline (M = 57.1) and follow-up (M = 57.4) demonstrated sustained relationship quality. For participants with dementia, large effect sizes for the CSDD suggested trends toward decreased depression (d = -0.83) and improved mood (d = -0.88). For family caregivers, a large effect size suggested a trend toward improvement for the AQoL-8D sub-domain examining independent living (d = -0.93). Qualitative data indicated that session design and delivery were acceptable, and TSW was a positive shared experience with personal benefits, which supported rather than changed relationship quality. CONCLUSION: High retention and qualitative data indicate that TSW was well received by participants. Effect sizes suggest that group TSW for dyads may have beneficial impacts on depression for people with dementia and quality of life for family caregivers. Future research with a fully powered sample is recommended to further examine the psychosocial impacts of group TSW for people living with dementia/family caregiver dyads.

A Group Therapeutic Songwriting Intervention for Family Caregivers of People Living With Dementia: A Feasibility Study With Thematic Analysis.

This study aimed to test the feasibility of implementing a group songwriting program with family caregivers (FCGs) of people living with dementia. Fourteen FCGs consented to participate in either the songwriting group (n = 8) or control condition (n = 6). Participants completed baseline and 7-week measures of depression (PHQ-9), perceptions of their caregiving experience (PACQ), and perceptions of their relationship with the care recipient (QCPR). A six-session group songwriting program was implemented across two sites, focusing on participants co-creating a song about their caregiving experiences. Participation and retention rates were high suggesting the intervention was acceptable. An observed pre-post effect size for the PHQ-9 in the experimental group (d = 0.64) and control group (d = -0.33) suggests the measure is sensitive to change over a short period of time in this population and has the potential to detect significant change in a larger controlled trial. Qualitative analysis of focus group interviews suggested the songwriting process allowed participants to share their entire caregiver journey with others, differentiating the intervention from standard carer support groups. Participants described group songwriting as enabling them to find connections with other caregivers, create a group identity, and gain insight into their carer journey, subsequently leading to the development of inner strength and personal growth. Qualitative findings suggest coping may be a more relevant construct to measure than caregiver-patient relationship quality or caregivers' perception of caregiving.