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BACKGROUND: Music has long been identified as a nonpharmacological tool that can provide benefits for people with dementia, and there is considerable interest in designing technologies to support the use of music in dementia care. However, to ensure that music technologies are appropriately designed for supporting caregivers and people living with dementia, there remains a need to better understand how music is currently used in everyday dementia care at home. OBJECTIVE: This study aims to understand how people living with dementia and their caregivers use music and music technologies in everyday caring, as well as the challenges they experience using music and technology. METHODS: This study used a mixed methods design. First, a survey was administered to 13 people living with dementia and 64 caregivers to understand their use of music and technology. Subsequently, 18 survey respondents (family caregivers: n=12, 67%; people living with dementia: n=6, 33%) participated in focus groups regarding their experiences of using music and technology in care. Interview transcripts were analyzed using reflexive thematic analysis. RESULTS: Most of the survey respondents (people living with dementia: 9/13, 69%; family caregivers: 47/63, 75%) reported using music often or very often in their daily lives. Participants reported a range of technologies used for listening to music, such as CDs, radio, and streaming services. Focus groups highlighted the benefits and challenges of using music and music technologies in everyday care. Participants identified using music and music technologies to regulate mood, provide joy, facilitate social interaction and connection, encourage reminiscence, provide continuity of music use before and after the dementia diagnosis, and make caregiving easier. The challenges of using music technology in everyday caring included difficulties with staying up to date with evolving technology and low self-efficacy with technology for people living with dementia. CONCLUSIONS: This study shows that people with a dementia diagnosis and their caregivers already use music and music technologies to support their everyday care needs. The results suggest opportunities to design technologies that enable easier access to music and to support people living with dementia with recreational and therapeutic music listening as well as music-based activities.
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Cuidadores , Demencia , Grupos Focales , Música , Humanos , Demencia/psicología , Cuidadores/psicología , Música/psicología , Femenino , Masculino , Anciano , Encuestas y Cuestionarios , Musicoterapia/métodos , Persona de Mediana Edad , Anciano de 80 o más AñosRESUMEN
OBJECTIVES: People living with dementia often experience behavioural and psychological symptoms of dementia (BPSD), which severely affect their well-being during the course of the disease. Particularly for BPSD outcomes, there is a high demand for increasing the evidence-based knowledge of non-pharmacological approaches, such as music-based interventions. Although previous reviews emphasize the potential effects of music-based interventions in people with dementia, they cover a wide range of different interventions and outcomes. METHOD: Therefore, this systematic review (SR) and network meta-analysis (NMA) aims to not only investigate the efficacy of music-based interventions on BPSD, but also to compare the impact of different types of music-based interventions on outcomes. Preferred reporting items for SR and meta-analysis protocols (PRISMA-P) and the PRISMA NMA extension were followed. Several databases will be searched from inception to the date the search will be performed, for relevant randomized or non-randomized controlled trials comparing a music-based intervention with treatment as usual, active controls, or another music-based intervention. Multivariate pairwise meta-analyses will be conducted for each outcome. NMA based on a frequentist random-effects model will be used to estimate the comparative effects of each type of music-based intervention and related components across outcomes. Heterogeneity will be investigated by meta-regression models. CONCLUSION: Based on our knowledge, this may be the first SR and NMA study to compare the efficacy of different types of music-based interventions. In addition, combined with our multivariate analysis approach, it will allow us to identify potential effect modifiers in music-based intervention for treating BPSD.
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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.
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BACKGROUND: This study was initiated and co-designed by a Participant and Public Involvement (PPI) group attached to HOMESIDE, a randomized controlled trial that investigated music and reading interventions for people living with dementia and their family caregivers across five countries: Australia, Germany, Norway, Poland, and the UK. The aim was to capture experiences of PPI across the five countries, explore the benefits and challenges of PPI in dementia research, and identify contributions made to the study. METHODS: We surveyed PPI members and academic researchers who collaborated on the HOMESIDE study. The survey was co-designed through consultation with PPI members and academics, alongside a small scoping literature review. Survey questions covered four topics: (1) expectations for PPI, (2) perceived contributions of PPI to the research study, (3) benefits and challenges of PPI, and (4) recommendations for future PPI in dementia research. RESULTS: There were 23 responses, representing 50% of the PPI members (n = 16) and 29% of academics (n = 7). PPI was found to be beneficial to the research and individuals involved. Contributions to the research included supporting recruitment and publicity, advising on the design of participant-facing materials, guiding the design and delivery of the interventions, and identifying cultural differences affecting research delivery. PPI members benefited from building connections, sharing experiences and receiving support, learning about dementia and research, and gaining new unexpected experiences. Academics learned about the realities of living with dementia, which they felt informed and grounded their work. Several challenges were identified, including the need for clear expectations and objectives, inconsistency of PPI members across research stages, limitations of meeting online versus in-person, scheduling difficulties, and language barriers. CONCLUSIONS: This study identifies important considerations for implementing PPI within dementia studies and international healthcare research more broadly. Our findings guided the development of five recommendations: (1) involve PPI members as early as possible and throughout the research process; (2) create a space for constructive criticism and feedback; (3) have clear tasks, roles, and expectations for PPI members; (4) involve PPI members with a diverse range of experiences and backgrounds; and (5) embed infrastructure and planning to support PPI.
Participant and Public Involvement (PPI) brings the knowledge of those with lived experience into research to improve research relevance and delivery. Our international study, called HOMESIDE, explored the benefits of music and reading activities for people with dementia and their family caregivers across five countries: Australia, Germany, Norway, Poland, and the UK. The study's PPI members included people with dementia, family carers, and healthcare professionals, who met regularly with the research team throughout the 3-year study. The current article reports the findings of a co-designed survey about PPI within HOMESIDE. Initiated by the HOMESIDE PPI members, we carried out a survey of PPI members and academics who worked on the study to learn about the unique experiences, perspectives, and contributions of PPI across the international research team.Our findings show that PPI helped to publicize the study, improved recruitment of research participants, and informed delivery of the interventions. Another important outcome was learning from each other; PPI members learned about dementia research and academics learned about the realities of living with dementia. However, the survey also highlighted challenges, including managing expectations, scheduling difficulties, and language barriers.To support PPI in future dementia research, we highlight five recommendations: (1) involve PPI members as early as possible and throughout the research process; (2) create a space for constructive criticism and feedback; (3) have clear tasks, roles, and expectations for PPI members; (4) involve PPI members with a diverse range of experiences and backgrounds; and (5) embed infrastructure and planning to support PPI.
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Music-based interventions are acknowledged to be accessible and beneficial to people living with dementia. As part of an over-arching research project exploring the contributions of person-centered caregiver singing (PCCS) intervention to caregiver's provision of care, this study aimed to explore caregiver's experiences of a PCCS training program. 8 caregivers across 2 care homes in South Africa participated in 4 iterative participatory cycles aimed at refining the training protocol. We completed a thematic analysis of semi-structured interviews of caregivers' experiences of the training. 3 themes emerged: workshop components contributed to positive learning experiences; caregivers' increased knowledge and insight into dementia, music, and personhood; and caregivers' enhanced self-efficacy which encompassed their emotional wellbeing, self-awareness, and confidence. Our study highlights caregivers' self-efficacy, self-hood, and personhood as valuable benefits in person-centered care training. Caregivers experienced training as both professionally and personally beneficial. While PCCS supported a shift toward a person-centered care approach, further research would help establish approaches to support sustainability of PCCS training and use in wider contexts.
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Dementia negatively affects the wellbeing of both caregivers and care recipients. Community-based therapeutic choir singing offers opportunities for music participation and social engagement that are accessible and mutually enjoyable for people with dementia and their family caregivers and promotes shared and meaningful musical interactions, which may support relationship quality. This study aimed to investigate the impact of the Remini-Sing therapeutic choir intervention on relationship quality, quality of life, depression, and social connectedness for dyads, as well as caregiver burden and care recipient anxiety. A randomized-controlled trial design was used with a target sample of 180 dyads. Due to recruitment difficulties, 34 participant dyads were recruited and randomly assigned to a 20-week group singing condition (nâ =â 16) or a waitlisted control group (nâ =â 18). Participant dyads consisted of people with dementia and their family caregivers who resided at home in the community. The Remini-Sing therapeutic choirs were held in community settings. Assessments were conducted by masked assessors at baseline, 11 weeks, and 21 weeks. Twenty-one dyads completed assessments at the primary timepoint (Week 11). Issues with recruitment and retention resulted in an unpowered study with no statistically significant findings. Mean decreases in anxiety and depression for choir participants with dementia were supported by medium to large effect sizes, indicating a potential intervention effect to be explored in future powered studies. Key learnings related to study design are discussed regarding recruitment, retention, participant burden, and sustainability, with recommendations made for future dementia research.
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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.
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OBJECTIVE: Occupational stress in professional dementia caregivers in residential aged care facilities has adverse effects on care quality, caregivers' health, and workforce sustainability. The purpose of this study was to examine the evidence regarding interventions to mitigate occupational stress for this population. METHODS: A systematic review of CINAHL, PsycINFO, PubMed and MEDLINE databases was conducted to identify original RCT research reporting on stress interventions, published in English between 1995 and March 2022. Search results were screened by two independent reviewers. Quality and risk of bias were appraised using the Downs and Black Checklist and Risk of Bias by two reviewers. Meta-analysis and subgroup analysis examined the pooled intervention effects on stress compared to control. RESULTS: 10 studies met the inclusion criteria, and these reported on 15 interventions and 28 outcomes from 92 facilities, involving 1,397 caregivers. We found a small and insignificant effect of interventions on caregiver stress (g = -.27, p = .16). Heterogeneity was partially explained by subgroup analysis. Interventions can mitigate stress and burden not attributed to client behaviour (n = 3) (g = -.85, p < .001), and improve caregivers' self-efficacy (n = 4) (g = -.35, p = .07). We were unable to determine the most effective type of intervention, although organisation focused interventions showed the greatest potential (g = -.58, p = .08). CONCLUSION: Interventions that improve caregivers' personal and organisational resources can reduce non-client associated stress and burden and increase self-efficacy. Aged care providers are recommended to prioritise education with organisational support interventions. Research on longitudinal effects and high-risk caregivers is required. Limitations are discussed. PROSPERO REGISTRATION NUMBER: CRD42022313715 (registered April 2022).
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Demencia , Estrés Laboral , Anciano , Humanos , Cuidadores , Hogares para Ancianos , Estrés Laboral/prevención & control , Carga del CuidadorRESUMEN
BACKGROUND: Parkinson's disease can negatively affect vocal functioning and social wellbeing, particularly in the latter stages of disease progression. Face-to-face group singing interventions can improve communication and wellbeing outcomes, yet not all people can access in-person sessions. To help overcome barriers to participation, exploration of the feasibility and utility of online therapeutic singing programs is needed. OBJECTIVES: To evaluate the feasibility, acceptability, and preliminary efficacy of a 12-week ParkinSong Online intervention on speech and wellbeing for people with Parkinson's disease. METHODS: A total of 28 participants with idiopathic Parkinson's disease were recruited to a single-arm feasibility study. Weekly 90-minute online sessions were co-facilitated by a music therapist and speech pathologist. Speech and wellbeing assessments were conducted pre and post intervention. Participant and facilitator surveys were administered after each session, with focus group interviews at the end of the program. RESULTS: The recruitment rate was high (90%) with no attrition, adverse events, or safety issues. There was good intervention fidelity, attendance (average 89%), and positive participant experience. Feasibility was good, with technology reported as the main challenge (connecting and navigating Zoom). No improvements were seen in voice measures or wellbeing outcomes in this small trial. The online format used in this study did not provide the same benefits as in-person ParkinSong sessions. CONCLUSIONS: ParkinSong Online is feasible for recreational purposes and social engagement provided that people have adequate technological knowledge or support. The optimal online delivery format to achieve communication improvements in Parkinson's awaits confirmation.
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Enfermedad de Parkinson , Canto , Telemedicina , Humanos , Estudios de Factibilidad , Encuestas y CuestionariosRESUMEN
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.
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BACKGROUND: Dementia care in South Africa faces challenges including a paucity of published research, a prevalent medical model in healthcare, and inadequate caregiver training. Music is a meaningful psychosocial intervention in dementia care, yet its application is not always safe and effective. A training protocol was codesigned to enhance caregivers' delivery of person-centred care through attuned, live singing. OBJECTIVES: This study explored the acceptability and caregivers' experiences of a person-centred caregiver singing (PCCS) protocol in South Africa. METHODS: A PCCS workshop was applied at seven aged care homes in Cape Town, South Africa. Forty-one formal caregivers adhered to inclusion criteria and consented to attend one workshop on PCCS. Mixed methods data collection was obtained from questionnaires containing a Likert scale and written reflections. Quantitative data were analysed through nonparametric tests and narrative descriptions, and qualitative data through thematic content analysis. Findings were integrated deductively using seven components of acceptability. RESULTS: Findings converged to show caregivers' positive experiences, highlighting observed improvements in residents' wellbeing, caregivers' capabilities, empathic connection, and person-centred care beyond the one-on-one. Caregivers' limited song repertoire and residents' unpredictability hindered implementation, however, the skills acquired appeared useful and applicable. CONCLUSIONS: Integration of findings suggests the acceptability of PCCS as caregivers experienced PCCS as a helpful, easy-to-implement intervention that contributes to their delivery of person-centred care. Further research focused on caregiver self-efficacy, empathy, and caregivers' own personhood is needed as well as determining the most effective strategies to ensure maximum uptake and sustainability in the sector. PATIENT OR PUBLIC CONTRIBUTION: Formal caregivers participated in this study, both attending the training and implementing the singing protocol with residents in their care at their respective care homes. The people living with dementia residing at the care home were recipients of the singing protocol but not included as participants in the research.
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This action research study explored the co-design of a person-centered caregiver singing (PCCS) protocol and caregivers' experiences of applying the PCCS intervention with people living with dementia. Eight caregivers across two care homes participated in four iterative cycles aimed at refining the training. Qualitative data collected from semi-structed group interviews, individual interactions and researcher reflections were analysed via thematic analysis which informed the refinements to the training protocol. A Person-Centered Caregiver Singing Model was developed from the thematic findings relating to caregivers' experiences of applying the PCCS intervention: enhanced caregiver capabilities, resident's wellbeing, improved relationship, the positive ecological shift, and ease of caregiving. PCCS fostered caregivers' empathy and self-efficacy, helping them better attune to and meet the needs of people with dementia. Findings suggest music therapists could share music therapy-informed skills with caregivers for use in daily care. Further research would be beneficial to understand the relationship between live music interventions and caregivers' self-efficacy and empathy, and to explore the training barriers in South Africa.
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Demencia , Música , Canto , Humanos , Cuidadores , SudáfricaRESUMEN
An increasing number of people with dementia receive informal care from family members to help them remain living in the community. Music therapy is particularly beneficial for supporting the wellbeing of people living with dementia. However, little is known about how music therapy might support people with dementia and their family care partners as dyads. This study explored the experiences of six dyads participating in a 12-week home-based skill-sharing music intervention facilitated by a music therapist. We examined their experiences during the intervention period and in the 3-6 months following. This study was conducted within a larger randomised control trial, HOMESIDE. Data was collected through video-recorded music-based interviews, participant diaries, and a semi-structured interview. Data was analysed using an abductive and relational-centred research approach in consideration of the Contextual Connection Model of Health Musicking for People Living with Dementia and Their Family Care Partners. The study found fifteen themes that describe dyads' supported experiences of sharing music in their homes. These were organised into three global themes: (1) experiences were shaped by complex influences; (2) a connected musical ecosystem; and (3) music was a resource for wellbeing. This study highlighted the important role of personalised facilitation and the therapeutic relationship as dyads learned to use music as a resource through a process of trial and error. The implications for skill-sharing, indirect music therapy and direct music therapy practice are discussed.
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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.
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BACKGROUND: Most people with dementia live in the community, not in residential care. Therefore, quality informal care for them is critical for managing behavioural and psychological symptoms of dementia (BPSD). Music therapy has been shown to reduce BPSD. However, no randomised controlled trial has examined the effects of music interventions delivered by caregivers in home settings. The HOME-based caregiver-delivered music intervention for people living with dementia (HOMESIDE) trial aims to evaluate the effectiveness of a 12-week music intervention in addition to standard care for BPSD. This article describes the statistical analysis plan. METHODS AND ANALYSIS: HOMESIDE is a large, pragmatic international three-arm parallel-group randomised controlled trial. Dyads (persons with dementia and caregiver) in Australia, Germany, the UK, Poland and Norway were randomised to receive music and standard care, reading and standard care or standard care alone. The primary outcome is BPSD (proxy) of the person living with dementia, measured using the Neuropsychiatric Inventory-Questionnaire (NPI-Q) at 90 and 180 days post-randomisation. Longitudinal analysis will compare NPI-Q severity between music and standard care versus standard care alone. Secondary outcomes include quality of life and depression (both person with dementia and caregiver), cognition (person with dementia only), distress, resilience, competence and caregiver-patient relationship (caregiver only). Treatment effects will be obtained at 90 and 180 days post-randomisation, where applicable. Safety outcomes (adverse events, hospitalisations, deaths) will be summarised. DISCUSSION: This statistical analysis plan provides a detailed methodology for the analysis of HOMESIDE and will improve the validity of the study and reduce the potential for bias. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12618001799246. Registered on November 05, 2018. CLINICALTRIALS: gov NCT03907748. Registered on April 09, 2019.
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Demencia , Música , Humanos , Cuidadores , Australia , Calidad de Vida , Lectura , Demencia/diagnóstico , Demencia/terapiaRESUMEN
Background: While studies have identified strategies that are useful for recruiting people living with dementia, none have focused on psychosocial interventions involving arts therapies, or have examined the profiles of older people living in the community who consent or decline participation, particularly during a global pandemic. We aimed to identify the most effective recruitment strategies according to participant characteristics and transnational differences and develop a profile of consenting and non-consenting participants. Methods: Recruitment teams in Australia, Norway, Germany, Poland, and the United Kingdom, recorded participants' source of study awareness and characteristics of consenting and non-consenting participants. Distributions of participants 'consenting to participate' were compared and logistic regressions were used to estimate the odds ratios. Results: Consenting female caregivers were disproportionally represented. Study awareness differed between countries but overall, most expressions of interest to participate were derived from referrals from professionals or organisations, or from databases of people wanting to participate in research. Troughs in recruitment rates occurred during Northern Hemisphere summer vacation periods, and during Christmas periods. Conclusions: This study found that recruiting for a trial with community-dwelling family caregivers and people living with dementia is challenging, especially during a global pandemic. While spousal caregivers comprised the highest proportion of dyads recruited, overall spousal caregivers were more reluctant to consent to participate than adult child caregivers. More targeted recruitment strategies designed for minority groups are also needed to ensure broader representation in dementia treatment studies.
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OBJECTIVES: To examine research on the training of formal caregivers in live music interventions within care situations with persons with dementia. METHODS: This review was registered with PROSPERO (CRD42020196506). PubMed, PsycINFO (Ovid), MEDLINE, Discovery EBSCO, Embase, CINAHL (Complete), AMED and ProQuest Dissertations and Theses Global were searched in September 2020 and again in October 2022. English, peer-reviewed studies on formal caregivers trained in using live music when caring one-on-one with persons with dementia were included. The Mixed Methods Assessment Tool (MMAT) was employed to assess quality, and narrative synthesis with effect sizes (Hedges-g) and thematic analysis were used for quantitative and qualitative studies respectively. RESULTS: Nine studies (four qualitative, three quantitative, two mixed methods studies) were included. Quantitative studies demonstrated significant differences for music training on outcomes measuring agitation and emotional expression. Thematic analysis yielded five themes: emotional wellbeing; mutual relationship; shifts in caregivers' experiences; care environment; and insights into person-centered care. CONCLUSION: Training for staff in live music interventions may benefit the delivery of person-centered care by supporting communication, easing care, and capacitating caregivers to meet the needs of persons with dementia. Findings appeared context specific due to high heterogeneity and small sample sizes. Further research on quality of care and caregiver outcomes, and sustainability of training is recommended.
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Demencia , Musicoterapia , Música , Humanos , Cuidadores/psicología , Demencia/terapia , Demencia/psicología , Investigación CualitativaRESUMEN
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.
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Demencia , Musicoterapia , Música , Humanos , Musicoterapia/métodos , Demencia/terapia , Calidad de Vida , EmocionesRESUMEN
AIM: The aim of this study is to describe the individualized occupational performance issues identified by parents/carers and children prior to selective dorsal rhizotomy (SDR) surgery and analyse change up to 2 years post surgery in goal attainment and quality of life (QoL). METHOD: The Australian SDR Research Registry (trial registration: ACTRN12618000985280) was used to extract data for individualized goals, goal attainment and QoL based on the Canadian Occupational Performance Measure (COPM) and the Cerebral Palsy Quality of Life Questionnaire for Children (CP QOL-Child parent-proxy) at baseline and 1 and 2 years following SDR. Change in mean scores was analysed using linear mixed models. RESULTS: Fifty-two children had COPM scores at baseline and 1 and/or 2 years post, of which 28 had two QoL scores. COPM problem areas included leisure (n = 39), productivity (n = 37) and self-care (n = 173). The most common goals were walking (26.1%), participation in physical activities (17.7%) and transitions (14.1%). Mean COPM scores improved significantly between baseline to 1 year and baseline to 2 years (P < 0.001). Mean QoL scores improved between baseline to 1 year for functional QoL domains: participation and physical health (P = 0.003) and pain and impact of disability (P = 0.011). CONCLUSIONS: Collaborative goal setting is an integral part of family-centred rehabilitation practice. The COPM was an appropriate individualized outcome measure in identifying meaningful goals for our SDR cohort. Results demonstrate improved scores in goal attainment and improvement in functional QoL domains. This paper highlights the need to include outcomes that measure daily life experiences.
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Parálisis Cerebral , Rizotomía , Humanos , Rizotomía/métodos , Calidad de Vida , Objetivos , Australia , Canadá , Parálisis Cerebral/rehabilitación , Resultado del TratamientoRESUMEN
Aligned with best practice guidelines for patients presenting with a disorder of consciousness (DoC), music therapy interventions with this population aim to increase arousal and awareness to support emergence to consciousness. There is a significant evidence base supporting music therapy for adults with a DoC; however, there are currently no published tools that systematically capture behavioral responses of this population during rehabilitative music therapy interventions. Further, the developmentally specific response to severe brain injury in the pediatric population means pediatric-specific research is required. The Music Interventions in Pediatric DoC Behavior Observation Record (Music Behavior Record [MBR]) was developed to objectively record responses during music therapy interventions for children presenting with a DoC. To establish content validity and inter-rater reliability, a pragmatic pilot study was undertaken. Results established that the MBR has content validity with 100% agreement among participants. Overall fair-substantial inter-rater reliability in >70% of the behavioral responses recorded in the MBR indicate the MBR is an early but promising tool to objectively capture responses during music therapy interventions. The use of the MBR may ultimately support clinical advancement and intervention research to optimize consciousness recovery for the pediatric DoC population.