Arts-based interventions for people living with dementia: Measuring ‘in the moment’ wellbeing with the Canterbury Wellbeing Scales

Background: There is growing acknowledgement for the need to move beyond exclusive biomedical understandings of dementia and also focus on how to improve the lives and wellbeing of people living with dementia. A mounting body of research advocates for the benefits of arts-based interventions for this population. The purpose of this study was to explore the links between multiple components of arts-based interventions and subjective wellbeing in order to help assess if these activities might contribute to meaningful community-based dementia care initiatives. Methods: Using previously collected data across different intervention sites, a within- and between- participants design was used that assessed wellbeing through the Canterbury Wellbeing Scales (CWS) in people with mild-to-moderate dementias (N = 201) who participated in various community arts-based interventions (ABI). Data were analysed using non-parametric statistical analyses and bootstrapped moderation models. Results: Increases in subjective wellbeing were associated with all forms of ABI. Co-creative sessions significantly strengthened the relationship between number of sessions attended and overall wellbeing as well as optimism. No significant moderating effect was observed between number of sessions attended and carer presence. Conclusions: In the largest study of its kind to date to assess wellbeing using arts activities in a community-based dementia sample, findings support the use and acceptability of the CWS as a measurement tool for people with early-to-middle stages of dementia and suggest that the CWS can reliably measure wellbeing in this population. In addition, the positive effect of arts-based interactions on specific aspects of wellbeing were found, which provide a better understanding of the conditions under which these effects can be prolonged and sustained. Further research is needed to better understand the environmental, social, and psychological mechanisms through which these improvements operate

Singing and music making: physiological responses across early to later stages of dementia [version 2; peer review: 1 approved with reservations]

Background: Music based interventions have been found to improve the wellbeing of people living with dementia. More recently there has been interest in physiological measures to provide additional information about how music and singing impact this population. / Methods: This multiple-case study design explored physiological responses (heart rate-HR, electrodermal activity-EDA, movement, and skin temperature-ST) of nine people with mild-to-moderate dementia during a singing group, and six people in the later stages of dementia during an interactive music group. The interactive music group was also video recorded to provide information about engagement. Data were analysed using simulation modelling analysis. / Results: The singing group showed an increase in EDA (p < 0.01 for 8/9 participants) and HR (p < 0.01 for 5/9 participants) as the session began. HR (p < 0.0001 for 5/9 participants) and ST (p < 0.0001 for 6/9 participants) increased during faster paced songs. EDA (p < 0.01 all), movement (p < 0.01 for 8/9 participants) and engagement were higher during an interactive music group compared to a control session (music listening). EDA (p < 0.0001 for 14/18 participants) and ST (p < 0.001 for 10/18 participants) increased and in contrast to the responses during singing, HR decreased as the sessions began (p < 0.002 for 9/18 participants). EDA was higher during slower music (p < 0.0001 for 13/18 participants), however this was less consistent in more interactive sessions than the control. There were no consistent changes in HR and movement responses during different styles of music. / Conclusions: Physiological measures may provide valuable information about the experiences of people with dementia participating in arts and other activities, particularly for those with verbal communication difficulties. Future research should consider using physiological measures with video-analysis and observational measures to explore further how engagement in specific activities, wellbeing and physiology interact

Situating support for people living with rarer forms of dementia

Background Awareness of a multitude of diseases that can cause neurodegenerative decline and their unique symptom profiles in the dementia care and support sectors remains limited. Obtaining an accurate diagnosis and post-diagnostic care and support is a challenge for many people and their families. As part of a larger study examining multi-component forms of support for people living with rarer dementias, the aim of this present study was to examine how rare dementia was situated within the complex social groupings, their organization and embedded discursive constructions that broadly form dementia care and support delivery. Methods Adopting a situational analysis approach, we undertook an examination of public documents and organizational websites within the support sector for people living with dementia in Canada, England, and Wales. We also surveyed professionals to further explore the situation at the point of care and support delivery. Consistent with our approach, data collection and analysis occurred concurrently including the development of a series of analytic maps. Results Recognizing the complexities within the situation, our findings provided new insights on the situated structures for support action and the discursive representations that illuminate both the limitations of the current support landscape and possibilities for a more flexible and tailored rare dementia support. Alongside, the predominant universal versus tailored support positionings within our data reinforced the complexity from which a promising new social space for people living with rarer dementias is being cultivated. Conclusions The social worlds engaged in supportive action with people living with rare dementia are less visible within the shadow of a universally constructed dementia support milieu and appear to be negotiated within this powerful arena. However, their evolving organization and discursive constructions point to an emerging new social space for people living with rarer conditions

Singing and music making: physiological responses across early to later stages of dementia [version 1; peer review: awaiting peer review]

BACKGROUND: Music based interventions have been found to improve the wellbeing of people living with dementia. More recently there has been interest in physiological measures to provide additional information about how music and singing impact this population. METHODS: This multiple-case study design explored physiological responses (heart rate-HR, electrodermal activity-EDA, movement, and skin temperature-ST) of nine people with mild-to-moderate dementia during a singing group, and six people in the later stages of dementia during an interactive music group. The interactive music group was also video recorded to provide information about engagement. Data were analysed using simulation modelling analysis. RESULTS: The singing group showed an increase in EDA (p < 0.01 for 8/9 participants) and HR (p < 0.01 for 5/9 participants) as the session began. HR (p < 0.0001 for 5/9 participants) and ST (p < 0.0001 for 6/9 participants) increased during faster paced songs. EDA (p < 0.01 all), movement (p < 0.01 for 8/9 participants) and engagement were higher during an interactive music group compared to a control session (music listening). EDA (p < 0.0001 for 14/18 participants) and ST (p < 0.001 for 10/18 participants) increased and in contrast to the responses during singing, HR decreased as the sessions began (p < 0.002 for 9/18 participants). EDA was higher during slower music (p < 0.0001 for 13/18 participants), however this was less consistent in more interactive sessions than the control. There were no consistent changes in HR and movement responses during different styles of music. CONCLUSIONS: Physiological measures may provide valuable information about the experiences of people with dementia participating in arts and other activities, particularly for those with verbal communication difficulties. Future research should consider using physiological measures with video-analysis and observational measures to explore further how engagement in specific activities, wellbeing and physiology interact

Dementia in rural settings: A scoping review exploring the personal experiences of people with dementia and their carers

Rural areas tend to be inhabited by more older people and thus have a higher prevalence of dementia. Combined with lower population densities and more sparse geography, rural areas pose numerous barriers and costs relating to support and resource provision. This may leave people with dementia in rural places at a significant disadvantage, leading to a heavy reliance on informal support networks. The present study explores the personal experiences of people living with dementia and carers living in rural areas, seeking to discover both benefits and challenges, as well as recommendations within the literature for improving the lives of those affected by dementia in rural areas. A scoping review following the framework of Arksey and O'Malley identified 60 studies that describe or discuss the personal experience of dementia (either by the person with dementia or carer), in relation to living in rural or remote geographical areas. Four overarching themes were derived, namely the possible benefits of living in a rural community (supportive rural communities), sources of strength described by people affected by dementia in rural areas (managing and coping), detrimental aspects of living in a rural community (rural community challenges) and difficulties with dementia care services. Three further themes yielded recommendations for improving the experience of dementia in rural areas. This review highlights some potential opportunities related to living in rural areas for people living with dementia. These often come with parallel challenges, reflecting a delicate balance between being well-supported and being in crisis for those living in rural areas. Given the limited access to formal services, supporting people with dementia in rural areas requires input and innovation from the people, organisations and services local to those communities

Development of the Video Analysis Scale of Engagement (VASE) for people with advanced dementia [version 2; peer review: 2 approved with reservations]

Background: The current study sought to develop a valid, reliable and unobtrusive tablet computer-based observational measure to assess engagement of people with advanced dementia. The Video Analysis Scale of Engagement (VASE) was designed to enable the rating of moment-by-moment changes in engagement during an activity, which would be useful for both future research and current residential care. Methods: An initial version of the VASE was tested. Face validity and content validity were assessed to validate an operational definition of engagement and develop an acceptable protocol for the scale. Thirtyseven non-professional and professional volunteers were recruited to view and rate level of engagement in music activities using the VASE. Results: An inter-class coefficient (ICC) test gave a high level of rating agreement across professionals and non-professionals. However, the ICC results of within-professionals were mixed. Linear mixed modelling suggested that the types of interventions (active or passive music listening), the particular intervention session being rated, time period of video and the age of raters could affect the ratings. Conclusions: Results suggested that raters used the VASE in a dynamic fashion and that the measure was able to distinguish between interventions. Further investigation and adjustments are warranted for this to be considered a valid and reliable scale in the measurement of engagement of people with advanced dementia in a residential care setting

Peer support for people living with rare or young onset dementia: An integrative review

Objectives: The aim of this integrative review was to identify and synthesize the literature on peer support interventions for people living with or caring for someone with a rare or young onset dementia. Design: A literature search of articles was performed using the Nipissing University Primo search system, a central index that enables simultaneous searches across databases which included MEDLINE (PubMed), Web of Science, PsycINFO, CINAHL, Sociological Abstracts, Cochrane Library. Results: The eleven papers that met the inclusion criteria spanned eighteen years and from five countries. Studies reported on peer support programs that were either hospital-based (n = 6) or community-based (n = 4), and were predominantly led by disciplines in the health sciences. Only one study did not involve delivering services. There was a range of methodological quality within the studies included in the review. Further analysis and synthesis led to the identification of three overarching peer support themes. These included: (1) peers as necessarily part of social support interventions; (2) a theoretical portmanteau; and (3) dementia spaces and relationality. Conclusion: Consistent with a much larger body of work examining peer involvement in social interventions, this review reinforced the valuable contribution of peers. A full understanding of the mechanisms of change was not achieved. Notwithstanding, the issue of studies neglecting to sufficiently conceptualize and describe interventions is an important one – drawing attention to the need to continue to explore varied delivery, including co-produced models, and more effective evaluation strategies to inform the dementia care sector

Development of the Video Analysis Scale of Engagement (VASE) for people with advanced dementia [version 3; peer review: 1 approved, 1 approved with reservations]

BACKGROUND: The current study sought to develop a valid, reliable and unobtrusive tablet computer-based observational measure to assess engagement of people with advanced dementia. The Video Analysis Scale of Engagement (VASE) was designed to enable the rating of moment-by-moment changes in engagement during an activity, which would be useful for both future research and current residential care. METHODS: An initial version of the VASE was tested. Face validity and content validity were assessed to validate an operational definition of engagement and develop an acceptable protocol for the scale. Thirty-seven non-professional and professional volunteers were recruited to view and rate level of engagement in music activities using the VASE. RESULTS: An inter-class coefficient (ICC) test gave a high level of rating agreement across professionals and non-professionals. However, the ICC results of within-professionals were mixed. Linear mixed modelling suggested that the types of interventions (active or passive music listening), the particular intervention session being rated, time period of video and the age of raters could affect the ratings. CONCLUSIONS: Results suggested that raters used the VASE in a dynamic fashion and that the measure was able to distinguish between interventions. Further investigation and adjustments are warranted for this to be considered a valid and reliable scale in the measurement of engagement of people with advanced dementia in a residential care setting

A systematic review and psychometric evaluation of resilience measurement scales for people living with dementia and their carers

Psychometrically sound resilience outcome measures are essential to establish how health and care services or interventions can enhance the resilience of people living with dementia (PLWD) and their carers. This paper systematically reviews the literature to identify studies that administered a resilience measurement scale with PLWD and/or their carers and examines the psychometric properties of these measures. Electronic abstract databases and the internet were searched, and an international network contacted to identify peer-reviewed journal articles. Two authors independently extracted data. They critically reviewed the measurement properties from the available psychometric data in the studies, using a standardised checklist adapted for purpose. Fifty-one studies were included in the final review, which applied nine different resilience measures, eight developed in other populations and one developed for dementia carers in Thailand. None of the measures were developed for use with people living with dementia. The majority of studies (N = 47) focussed on dementia carers, three studies focussed on people living with dementia and one study measured both carers and the person with dementia. All the studies had missing information regarding the psychometric properties of the measures as applied in these two populations. Nineteen studies presented internal consistency data, suggesting seven of the nine measures demonstrate acceptable reliability in these new populations. There was some evidence of construct validity, and twenty-eight studies hypothesised effects a priori (associations with other outcome measure/demographic data/differences in scores between relevant groups) which were partially supported. The other studies were either exploratory or did not specify hypotheses. This limited evidence does not necessarily mean the resilience measure is not suitable, and we encourage future users of resilience measures in these populations to report information to advance knowledge and inform further reviews. All the measures require further psychometric evaluation in both these populations. The conceptual adequacy of the measures as applied in these new populations was questionable. Further research to understand the experience of resilience for people living with dementia and carers could establish the extent current measures -which tend to measure personal strengths -are relevant and comprehensive, or whether further work is required to establish a new resilience outcome measure