'I'D RATHER HAVE MUSIC!': the effects of live and recorded music for people with dementia living in care homes, and their carers

The objectives of this thesis were to explore the effects of receptive individualised live and recorded-music on interactions within participating dyads consisting of a person with dementia who was in their final phase of life (resident), and a person with whom he or she shared a close connection (carer), as well as on each individual participant. A 'Receptive' music intervention is one where participants are not required to do anything but listen. METHODS The conceptual frameworks of realist evaluation, ethnography, symbolic interactionism, and dramaturgical actionism influenced the design of this study. There were two phases: during phase-1, fifteen semi-structured interviews were conducted with 'key-consultants', who were specialists in topics related to this thesis, to inform the design of 'phase-2'. During 'phase-2', musical interventions were conducted at five non-NHS care homes in Scotland over a period of nine-months. Each intervention consisted of either individualised live-music (3 sessions) or the same or similar music pre-recorded (three sessions); all music was played by the researcher on the solo cello. Interventions took place in residents' private bedrooms, and lasted between fifteen and seventy-minutes. The order of live and recorded-music interventions was switched for approximately half the dyads. Each intervention was video-recorded for later observation. Semi-structured interviews and Visual Analogue Scales (VAS) were administered with each participating carer before and after the conclusion of their series of interventions, to compare their expectations with their actual experiences and to better understand their experience. Whenever possible, key-staff and managers were also interviewed to learn what their perceptions of this study had been: its effects on them and on participants. ANALYSIS required repeated visits to the raw data: beginning with thickly-describing all video-footage; then thematically coding all thick-descriptions and transcribed audio-interviews; and lastly revisiting all video-footage via a self-modified version of an evaluative observation instrument; 'Person Interaction Environment Care Experience in Dementia' (PIECE-dem). FINDINGS support prior research regarding the beneficial effects of individualised receptive music on listeners who have dementia. This study suggests that both live and recorded-music promote wellbeing, and enhance dyad interaction in the moment of listening. These findings demonstrate the potential for receptive music to create an embodied sense of 'haven' for people with dementia who are nearing the end of life and for those sharing the experience with them: by capturing and holding their attention, and transporting them either back in time, or entirely out of time into a state of 'flow', or into an 'intense musical experience'

A Taxonomy of Arts Interventions for People With Dementia

Background and Objectives The current evidence base for the arts and dementia has several limitations relating to the description, explanation, communication, and simplification of arts interventions. Research addressing these challenges must be multidisciplinary, taking account of humanities and science perspectives. Consequently, this research aimed to produce a taxonomy, or classification, of arts interventions for people with dementia as a contribution to this growing field. Research Design and Methods This research was underpinned by taxonomy and realist methodology. Taxonomy, the science of classification, produces a common language to name, define, and describe the world around us. Realist theory explains how interventions “work” and produce their effects. The main findings in this paper were generated from a case study and a Delphi study. Results An arts and dementia taxonomy of 12 dimensions was developed: Art Form, Artistic elements, Artistic focus, Artistic materials, Arts activity, Arts approaches, Arts facilitators, Arts location, Competencies, Complementary arts, Intervention context, Principles. Discussion and Implications Arts interventions can be classified according to their contexts, mechanisms, and outcomes. A range of stakeholders could benefit from the taxonomy, including people with dementia, artists, practitioners, carers, care staff, funders, commissioners, researchers, and academics. Language relating to the arts and dementia can be adapted depending on the audience. This is a foundational model requiring further development within the arts and dementia community

Mentoring and Peer Support as Facilitators of Arts-based Practice in Care Homes

This article reports on the evaluation of a mentoring approach that was adopted to support the sustainable provision of activities in UK care homes across three creative art forms: poetry, dance, and drama. Data are presented from multiple sources including questionnaires, focus groups, reflective diaries and interviews to explore implementation and impact of the approach. Artists reported that the support of their mentors enabled them to develop the confidence, skills and strategies required to work effectively in care homes as a new setting. For the mentors, being involved in the project led to professional development. Diverse methods of mentor- to- artist contact were a key feature of the approach, including face-to-face meetings, telephone calls, emails and tele-conferencing. Peer support, although not planned, emerged as an important mechanism for sharing skills and information among artists. The impact of the mentoring approach continued beyond the life of the project, with some artists extending their practice to additional care homes and other settings including homeless adults, young children and hospitals

Dementia: When music is the Only Way In – An Emergency Intervention: Innovative Practice

Music cannot only provide comfort and reduce agitation associated with dementia, but can also generate connections between all who are present. This article describes an ‘emergency’ music intervention conducted by the author during doctoral fieldwork, which illustrates how music was used as a medium for connection and comfort with a highly agitated person with advanced dementia. This experience provides strong support for increasing the training of musicians towards providing music for people living with dementia – particularly when other nonpharmaceutical methods are not proving effective

Connections With Nature For People Living With Dementia

Purpose: The benefits of ‘green dementia care’, whereby people living with dementia are supported to connect with nature, are increasingly being recognised. Evidence suggests that these benefits span physical, emotional and social spheres and can make a significant contribution towards quality of life. However, care settings often present specific challenges to promoting such connections due to a range of factors including risk averse cultures and environmental limitations. This paper reports on a project that aimed to explore the opportunities, benefits, barriers and enablers to interaction with nature for people living with dementia in residential care and extra care housing schemes in the UK. Design/methodology/approach: Data were gathered from 144 responses to an online survey by managers/staff of extra care housing schemes and care homes in the UK. In depth-case studies were carried out at three care homes and three extra care housing schemes, involving interviews with residents, staff and family carers. Findings: Findings A wide variety of nature-based activities were reported, both outdoor and indoor. Positive benefits reported included improved mood, higher levels of social interaction and increased motivation for residents, and greater job satisfaction for staff. The design and layout of indoor and outdoor spaces is key, in addition to staff who feel enabled to promote connections with nature. Research limitations/implications: This paper is based on a relatively small research project in which the participants were self-selecting and therefore not necessarily representative. Practical implications: The paper makes some key recommendations for good practice in green dementia care in extra care housing and care homes. Social Implications: Outdoor activities can promote social interaction for people living with dementia in care settings. Our findings are relevant to the recent policy focus on social prescribing. Originality/value: The paper makes some key recommendations for good practice in green dementia care in extra care housing and care homes

“Now he sings”. The My Musical Memories Reminiscence Programme: Personalised Interactive Reminiscence Sessions for People Living With Dementia

This paper explores the impact of the My Musical Memories Reminiscence Programme (MMMRP), an innovative intervention that adopts a music-based reminiscence approach. MMMRP builds on the format of the popular Singing for the Brain sessions with the aim of increasing opportunities for interaction and reminiscence among people living with dementia. Data were collected pre- and post-intervention and three months later using structured observation, interviews and focus groups. Results suggest that that programme had a positive impact on participants by promoting engagement, reminiscence and social interaction. For some individuals the impacts continued beyond their participation in the programme. A range of key facilitators for successful implementation of this approach were identified including the Session Leader role, the involvement of informal carers and the input of volunteers

Haven: Sharing Receptive Music Listening to Foster Connections and Wellbeing for People with Dementia Who Are Nearing the End of Life, and Those Who Care For Them

This paper reports on research exploring the effects of music played for 12 dyads: a care home resident (‘resident’) with dementia and someone closely connected to him/her (‘carer’). Six individualised music interventions (3 live and 3 pre-recorded) were played by the first author on solo cello within five Scottish non-NHS care homes. All interventions were video-recorded. Semi-structured interviews with carer participants, key staff, and managers explored their responses to interventions. Thick descriptions of video recordings and interview transcripts were thematically coded using Nvivo. A key finding was that structural elements of the interventions combined with characteristics of the music played facilitated an internalised experience of ‘haven’; sonically transporting listeners away from their present reality and fulfilling the basic human needs for inclusion, comfort, identity, occupation and attachment

Stronger together: learning from an interdisciplinary Dementia, Arts & Wellbeing Network (DA&WN)

There is increasing interest in the use of arts and creative activity to enhance dementia care (e.g. Beard, 2012; Cowl & Gaugler, 2014; Young, Camic & Tischler, 2016), and to bring together and support professionals and those who use services, see Creative Practice as Mutual Recovery (2018). Over the past decade a growing body of research has established this interdisciplinary field of study and there are strategic moves to embed the arts in healthcare more widely (All-Party Parliamentary Group for Arts, Health and Wellbeing, 2017). However, existing research and arts practice have often proceeded in parallel with practitioners criticised for not providing evidence of efficacy, and researchers berated for not working collaboratively with artists (Zeilig & West, in press) and not involving people living with dementia in the co-design of research

Principles and Features to Define and Describe Arts Interventions for People with Dementia: a Qualitative Realist Study

Background: There is currently no consensus regarding the definition and description of arts interventions for people with dementia. Developing a common language of classification will encourage reflection on artistic practice, support the evaluation and improvement of arts interventions, and enable their benefits to be communicated more effectively. Methods: Using a qualitative framework derived from taxonomy and realist methodology, a literature review was undertaken to identify what key principles underpin arts interventions. This analysis was complemented by focus groups and workshops incorporating the lived experience of carers, artists, practitioners and care staff. Results: Nine principles were identified as elements present in person-centred arts interventions for people with dementia: Animation, Transcendence, Selfhood, Humanity, Expression, Connection, Possibility, Involvement and Awareness. Conclusions: It is possible to identify the component parts of arts interventions for people with dementia. These principles form an empirical basis for understanding how arts interventions work, while still respecting their individual nature

Pathogenetics of alveolar capillary dysplasia with misalignment of pulmonary veins.

Alveolar capillary dysplasia with misalignment of pulmonary veins (ACDMPV) is a lethal lung developmental disorder caused by heterozygous point mutations or genomic deletion copy-number variants (CNVs) of FOXF1 or its upstream enhancer involving fetal lung-expressed long noncoding RNA genes LINC01081 and LINC01082. Using custom-designed array comparative genomic hybridization, Sanger sequencing, whole exome sequencing (WES), and bioinformatic analyses, we studied 22 new unrelated families (20 postnatal and two prenatal) with clinically diagnosed ACDMPV. We describe novel deletion CNVs at the FOXF1 locus in 13 unrelated ACDMPV patients. Together with the previously reported cases, all 31 genomic deletions in 16q24.1, pathogenic for ACDMPV, for which parental origin was determined, arose de novo with 30 of them occurring on the maternally inherited chromosome 16, strongly implicating genomic imprinting of the FOXF1 locus in human lungs. Surprisingly, we have also identified four ACDMPV families with the pathogenic variants in the FOXF1 locus that arose on paternal chromosome 16. Interestingly, a combination of the severe cardiac defects, including hypoplastic left heart, and single umbilical artery were observed only in children with deletion CNVs involving FOXF1 and its upstream enhancer. Our data demonstrate that genomic imprinting at 16q24.1 plays an important role in variable ACDMPV manifestation likely through long-range regulation of FOXF1 expression, and may be also responsible for key phenotypic features of maternal uniparental disomy 16. Moreover, in one family, WES revealed a de novo missense variant in ESRP1, potentially implicating FGF signaling in the etiology of ACDMPV