Arts-based interventions for people living with dementia: Measuring 'in the moment' wellbeing with the Canterbury Wellbeing Scales.
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SUBMITTER: Strohmaier S
PROVIDER: S-EPMC8370129 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundArts-based activities are being increasingly suggested as a valuable activity for people living with dementia in terms of countering the negative aspects of their condition. The potential for such programmes to improve a broad range of psychosocial outcomes is suggested in some studies. However, there is largely an absence of rigorous methodology to demonstrate the benefits, and research results are mixed. Practice variability in terms of the content, contexts and implementation of such interventions raises challenges in terms of identifying an optimal arts programme model that could be adopted by other service providers. Understanding how interventions may have the best chance at broad implementation success and uptake is limited.Methods/designA realist review will be undertaken. This aims to understand how visual arts interventions influence outcomes in people living with dementia. The review will explore how the context, that is the circumstances which enable or constrain, affect outcomes through the activation of mechanisms. An early scoping search and a stakeholder survey formulated the preliminary programme theory. A systematic literature search across a broad range of disciplines (arts, humanities, social sciences, health) will be undertaken to identify journal articles and grey literature. Data will be extracted in relation to the programme theory, contextual factors, mechanisms and outcomes and their configurations, background information about the study design and participant characteristics, detail about the quantity ('dose') of an intervention, theoretical perspectives proposed by the authors of the paper and further theorising by the reviewer. Thematic connections/patterns will be sought across the extracted data, identifying patterns amongst contextual factors, the mechanisms they trigger and the associated outcomes.DiscussionAlong with stakeholder engagement and validation, this review will help inform the development of an optimal, replicable arts intervention for people with dementia as part of our broader research programme, titled 'Dementia and Imagination' (funded by the Arts and Humanities Research Council). Forthcoming work under this programme of research will test this theoretically informed intervention in three different geographical areas of the UK. The production of freely available practice guidance is a key aspect of dissemination.Trial registrationPROSPERO registration number CRD42014008702.
| S-EPMC4141269 | biostudies-literature
Project description:Background and objectivesTo determine how the wellbeing of carers of people with dementia is understood and measured in contemporary health research.Research design and methodsA systematic review of reviews was designed, registered with PROSPERO, and then conducted. This focused on systematic reviews of research literature published from 2010 onwards; with the wellbeing of carers of people with dementia being a primary focus. N = 19 studies met the inclusion criteria. Quality appraisal was conducted using the AMSTAR tool (2015). A narrative synthesis was conducted to explore how wellbeing is currently being understood and measured.ResultsContemporary health research most frequently conceptualizes wellbeing in the context of a loss-deficit model. Current healthcare research has not kept pace with wider discussions surrounding wellbeing which have become both more complex and more sophisticated. Relying on the loss-deficit model limits current research in understanding and measuring the lived experience of carers of people with dementia. There remains need for a clear and consistent measurement of wellbeing.Discussion and implicationsWithout clear consensus, health professionals must be careful when using the term "wellbeing". To help inform healthcare policy and practice, we offer a starting point for a richer concept of wellbeing in the context of dementia that is multi-faceted to include positive dimensions of caregiving in addition to recognized aspects of burden. Standardized and robust measurements are needed to enhance research and there may be benefit from developing a more mixed, blended approach to measurement.
| S-EPMC6857741 | biostudies-literature
Project description:Background and objectivesA 2008 European consensus on research outcome measures in dementia care concluded that measurement of carer quality of life (QoL) was limited. Three systematic reviews (2012, 2017, and 2018) of dementia carer outcome measures found existing instruments wanting. In 2017, recommendations were published for developing reliable measurement tools of carers' needs for research and clinical application. The aim of this study was to develop a new instrument to measure the QoL of dementia carers (family/friends).MethodsItems were generated directly from carers following an inductive needs-led approach. Carers (n = 566) from 22 English and Welsh locations then completed the items and comparator measures at three time points. Rasch, factor, and psychometric (reliability, validity, responsiveness, and minimally important differences [MIDs]) analyses were undertaken.ResultsFollowing factor analysis, the pool of 70 items was refined to three independent scales: primary SIDECAR-D (direct impact of caring upon carer QOL, 18 items), secondary SIDECAR-I (indirect impact, 10 items), and SIDECAR-S (support and information, 11 items). All three scales satisfy Rasch model assumptions. SIDECAR-D, I, S psychometrics: reliability (internal ≥ .70; test-retest ≥ .85); convergent validity (as hypothesized); responsiveness (effect sizes: D: moderate; I and S: small); MIDs (D = 9/100, I = 10/100, S = 11/100).Discussion and implicationsSIDECAR scales demonstrate robust measurement properties, meeting COSMIN quality standards for study design and psychometrics. SIDECAR provides a theoretically based needs-led QoL profile specifically for dementia carers. SIDECAR is free for use in public health, social care, and voluntary sector services, and not-for-profit organizations.
| S-EPMC8023371 | biostudies-literature
Project description:BackgroundThe European Association for Palliative Care White Paper defined optimal palliative care in dementia based on evidence and expert consensus. Yet, we know little on how to achieve this for people with dementia living and dying at home.AimsTo examine evidence on home palliative care interventions in dementia, in terms of their effectiveness on end-of-life care outcomes, factors influencing implementation, the extent to which they address the European Association for Palliative Care palliative care domains and evidence gaps.DesignA systematic review of home palliative care interventions in dementia.Data sourcesThe review adhered to the PRISMA guidelines and the protocol was registered with PROSPERO (CRD42018093607). We searched four electronic databases up to April 2018 (PubMed, Scopus, Cochrane library and CINAHL) and conducted lateral searches.ResultsWe retrieved eight relevant studies, none of which was of high quality. The evidence, albeit of generally weak quality, showed the potential benefits of the interventions in improving end-of-life care outcomes, for example, behavioural disturbances. The interventions most commonly focused on optimal symptom management, continuity of care and psychosocial support. Other European Association for Palliative Care domains identified as important in palliative care for people with dementia, for example, prognostication of dying or avoidance of burdensome interventions were under-reported. No direct evidence on facilitators and barriers to implementation was found.ConclusionsThe review highlights the paucity of high-quality dementia-specific research in this area and recommends key areas for future work, for example, the need for process evaluation to identify facilitators and barriers to implementing interventions.
| S-EPMC6620864 | biostudies-literature
Project description:ObjectivesTo identify features of programmes and approaches to make healthcare delivery in secondary healthcare settings more dementia-friendly, providing a context-relevant understanding of how interventions achieve outcomes for people living with dementia.DesignA realist review conducted in three phases: (1) stakeholder interviews and scoping of the literature to develop an initial programme theory for providing effective dementia care; (2) structured retrieval and extraction of evidence; and (3) analysis and synthesis to build and refine the programme theory.Data sourcesPubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Cochrane Library, NHS Evidence, Scopus and grey literature.Eligibility criteriaStudies reporting interventions and approaches to make hospital environments more dementia-friendly. Studies not reporting patient outcomes or contributing to the programme theory were excluded.ResultsPhase 1 combined findings from 15 stakeholder interviews and 22 publications to develop candidate programme theories. Phases 2 and 3 identified and synthesised evidence from 28 publications. Prominent context-mechanism-outcome configurations were identified to explain what supported dementia-friendly healthcare in acute settings. Staff capacity to understand the behaviours of people living with dementia as communication of an unmet need, combined with a recognition and valuing of their role in their care, prompted changes to care practices. Endorsement from senior management gave staff confidence and permission to adapt working practices to provide good dementia care. Key contextual factors were the availability of staff and an alignment of ward priorities to value person-centred care approaches. A preoccupation with risk generated responses that werelikely to restrict patient choice and increase their distress.ConclusionsThis review suggests that strategies such as dementia awareness training alone will not improve dementia care or outcomes for patients with dementia. Instead, how staff are supported to implement learning and resources by senior team members with dementia expertise is a key component for improving care practices and patient outcomes.Trial registration numberCRD42015017562.
| S-EPMC5541590 | biostudies-literature
Project description: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.
| S-EPMC9675235 | biostudies-literature
Project description:The majority of people living with dementia are cared for by their families. Family carers play a vital role in upholding the formal care system. Caring for a family member with dementia can be fulfilling. However, this role can have a considerable negative impact on family carers' mental and physical health and quality of life. Several empirical research studies have recently been conducted that explore the potential benefits of music interventions for family carers of people living with dementia. Singing has been the primary musical medium employed. This article presents the first review of this literature to date. It investigates the impact of music interventions on the health and well-being of family carers of people living with dementia, and how they experience and perceive these interventions. Whittemore and Knafl's five-stage integrative review framework was utilized: (i) problem identification; (ii) literature search; (iii) data evaluation; (iv) data analysis and synthesis; and (v) presentation of the findings. A total of 33 studies met the inclusion criteria. Analysis and synthesis resulted in three overarching themes: impact on family carers, carer perceptions of music interventions and null quantitative findings in small studies. The review found that singing and music interventions may improve family carers' social and emotional well-being, enhance their ability to cope and care and ameliorate the caring relationship, contributing to experiences of flourishing. However, it highlighted that this area is under-researched and pointed to the need for larger, more rigorous studies.
| S-EPMC9162174 | biostudies-literature
Project description:BackgroundHealth policy promotes post-diagnostic support for people affected by dementia. Evidence suggests psychosocial interventions can effectively support people living with dementia after diagnosis. Yet, what influences uptake of psychosocial interventions by people with early dementia is poorly understood. This research aimed to identify influences on uptake of psychosocial interventions by people with early dementia.MethodsSixteen face-to-face semi-structured interviews with people with early dementia, either alone or with a family member(s), were completed. Twelve staff participated in semi-structured interviews or a focus group. Thematic analysis and triangulation enabled identification of overall themes across different participant groups and interview types.Main findingsFour overarching themes influencing uptake were identified: (1) adjusting to a diagnosis, (2) appeal of activities and perception of benefit, (3) service and societal context, and (4) relationships and communication. Individual responses to diagnosis, experiences of dementia and dementia services influenced uptake. Group interventions were discussed the most by all participants. Group interventions offering social contact, peer support, information, enjoyable activities and mental stimulation were valued. However, group interventions specifically aimed at people with dementia did not appeal to all. Ability to travel and convenience of locations were important. Continuing with community activities not focused on dementia was valued. Stigma around dementia appeared to discourage uptake. Emotional and practical support from family was key to facilitating uptake as were the relationships between people with dementia and staff.ConclusionA complex interplay of individual, service and societal influences affect uptake of psychosocial interventions by people with early dementia. How interventions and which services can enable people with early dementia remain engaged in their everyday lives needs consideration. Further research examining uptake of specific interventions commonly offered to people living with early dementia is needed. Involving people with early dementia in designing interventions aiming to support them is paramount.
| S-EPMC8723173 | biostudies-literature
Project description:BackgroundAdult Day care centres provide an important aspect of care provision through all phases of the dementia illness from diagnosis to the end of life (Dabelko HI 2008) supporting the well-being of both older people living with dementia and their care partners. Services within adult day care settings are designed to provide biopsychosocial health benefits to participants as well as care partner respite.ObjectiveTo examine research studies, literature reviews and grey literature and identify and map the literature on psychosocial interventions used in day care services for older people living with dementia and chart their use, evaluation and outcomes. The research review question is "what are the psychosocial interventions used in day care service for older people living with dementia?" Psychosocial interventions are important non-pharmacological interventions which support people's wellbeing.MethodsInclusion/Exclusion criteria were identified and guided the search strategy. Participants were people aged 60 years and over living with dementia attending day care services. The use of psychosocial interventions for this cohort was the focus of the review. Databases were searched (Cochrane Reviews, CINAHL, Embase, Medline EBSCO, Medline Ovid, Medline PubMed, PsycINFO, Scopus, Open Grey, Lenus and WHO Global Index Medicus databases) using keywords/terms with Boolean operators from 2011 to 2023. Rayyan was used to extract and manage the data.ResultsThe findings present a narrative and charting of the data from the 45 papers that met the review criteria, and this data is mapped onto the five objectives. Within this review, interventions were grouped into five broad types: nature (n = 6 papers), memory/cognitive (n = 11 papers), social (n = 17 papers), animal (n = 4 papers), or physical/sensory (n = 7 papers) based interventions.ConclusionsThis review has illustrated the wide variety in the types, range and facilitation of psychosocial interventions within adult day care services. This review highlights the potential benefits of these interventions. However, findings must be considered in the context that many were provided as brief intervention studies with little evidence of continuation after the study and further research is required given the complex and diverse range of interventions. Results will be of interest to practitioners planning to implement or evaluate psychosocial interventions used in day care services for older people living with dementia.
| S-EPMC10712883 | biostudies-literature
Project description:BackgroundDementia is a distressing and disabling illness with worldwide estimates of increased numbers of people with the condition. Two thirds of people with dementia live at home and policies in many countries seek to support more people for longer in this setting. Incontinence both contributes to carer burden and is also a significant factor in the decision to move into care homes. A review was conducted for evidence of effectiveness for conservative interventions, which are non-pharmacological and non-surgical interventions, for the prevention or management of incontinence in community dwelling people with dementia.MethodFourteen electronic databases were searched, including MEDLINE, EMBASE and CINAHL (from inception to 2012). Assessments of risk of bias were made. Meta-analysis was inappropriate due to the heterogeneity of the interventions and outcome measurements. A narrative analysis was undertaken.ResultsFrom 427 identified abstracts, 56 studies were examined but only three met the inclusion criteria, all more than a decade old. All three focused on urinary incontinence. Two studies were exploratory or pilot studies. All had a control arm. The interventions were of advice for the carer to implement. Two included toileting education of prompted voiding or an individualised toileting schedule. There was insufficient evidence to support or rule out effectiveness of any of these interventions. Some interventions were unacceptable for some carers. None specifically reported the perspective of the person with dementia.ConclusionsThere was insufficient evidence from any studies to recommend any strategies. There remains an urgent need for both research and also clinical guidance for health professionals tailored to community settings where the majority of people with dementia live.
| S-EPMC3562513 | biostudies-literature