Dataset Information

Sustaining community-based interventions for people affected by dementia long term: the SCI-Dem realist review.

ABSTRACT:

Objectives

Community-based support for people with earlier-stage dementia and their care partners, such as regularly meeting groups and activities, can play an important part in postdiagnostic care. Typically delivered piecemeal in the UK, by a variety of agencies with inconsistent funding, provision is fragmented and many such interventions struggle to continue after only a short start-up period. This realist review investigates what can promote or hinder such interventions in being able to sustain long term.

Methods

Key sources of evidence were gathered using formal searches of electronic databases and grey literature, together with informal search methods such as citation tracking. No restrictions were made on article type or study design; only data pertaining to regularly meeting, ongoing, community-based interventions were included. Data were extracted, assessed, organised and synthesised and a realist logic of analysis applied to trace context-mechanism-outcome configurations as part an overall programme theory. Consultation with stakeholders, involved with a variety of such interventions, informed this process throughout.

Results

Ability to continually get and keep members; staff and volunteers; the support of other services and organisations; and funding/income were found to be critical, with multiple mechanisms feeding into these suboutcomes, sensitive to context. These included an emphasis on socialising and person-centredness; lowering stigma and logistical barriers; providing support and recognition for personnel; networking, raising awareness and sharing with other organisations, while avoiding conflict; and skilled financial planning and management.

Conclusions

This review presents a theoretical model of what is involved in the long-term sustainability of community-based interventions. Alongside the need for longer-term funding and skilled financial management, key factors include the need for stigma-free, person-centred provision, sensitive to members' diversity and social needs, as well as the need for a robust support network including the local community, health and care services. Challenges were especially acute for small scale and rural groups.

SUBMITTER: Morton T

PROVIDER: S-EPMC8264885 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:IntroductionWith numbers set to increase globally, finding ways to better support people with dementia and their families is a matter of growing concern. Community-based interventions can play a key role in supporting people with early to moderate stage dementia postdiagnosis, helping delay decline and hospitalisation. However, provision of such interventions is fragmented, with significant gaps and no reliable funding model, hence innovative groups and schemes catering for a genuine need can struggle long term and frequently fold.Methods and analysisThis realist review aims to expand our understanding of how best to implement and facilitate community-based interventions to run sustainably, focusing on contextually relevant explanations. We will gather and synthesise literature using a realist approach designed to accommodate and account for the complexity of 'real life' programmes, as implemented under different conditions in different settings, aiming to draw transferable conclusions about their sustainability that explain how and why context can influence outcomes. Our review will iteratively progress through five steps: (1) locate existing theories; (2) search for evidence (using Academic Search, AMED, CINAHL, EMBASE, MEDLINE, ProQuest, PsycINFO, PubMed, Scopus and Social Care Online, between May and September 2019); (3) article selection; (4) extracting and organising data; (5) synthesising the evidence and drawing conclusions. Data analysis will use a realist logic to explain what works, for whom, in what circumstances, in what respects, how and why. A stakeholder group will provide guidance and feedback throughout.Ethics and disseminationEthical approval was not required. Recommendations drawn from results are likely to be of interest to a range of stakeholders including those commissioning, planning, running, supporting or attending such interventions, as well as policymakers, healthcare professionals and researchers. We will draw on the expertise of our stakeholder group regarding tailoring dissemination to each audience using a variety of materials, formats and channels.

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.

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.

Project description:BackgroundSeventy percent of people with advanced dementia live and die in care homes. Multisensory approaches, such as Namaste Care, have been developed to improve the quality of life and dying for people with advanced dementia but little is known about effectiveness or optimum delivery. The aim of this review was to develop an explanatory account of how the Namaste Care intervention might work, on what outcomes, and in what circumstances.MethodsThis is a realist review involving scoping of the literature and stakeholder interviews to develop theoretical explanations of how interventions might work, systematic searches of the evidence to test and develop the theories, and their validation with a purposive sample of stakeholders. Twenty stakeholders - user/patient representatives, dementia care providers, care home staff, researchers -took part in interviews and/or workshops.ResultsWe included 85 papers. Eight focused on Namaste Care and the remainder on other types of sensory interventions such as music therapy or massage. We identified three context-mechanism-outcome configurations which together provide an explanatory account of what needs to be in place for Namaste Care to work for people living with advanced dementia. This includes: providing structured access to social and physical stimulation, equipping care home staff to cope effectively with complex behaviours and variable responses, and providing a framework for person-centred care. A key overarching theme concerned the importance of activities that enabled the development of moments of connection for people with advanced dementia.ConclusionsThis realist review provides a coherent account of how Namaste Care, and other multisensory interventions might work. It provides practitioners and researchers with a framework to judge the feasibility and likely success of Namaste Care in long term settings. Key for staff and residents is that the intervention triggers feelings of familiarity, reassurance, engagement and connection.Study registrationThis study is registered as PROSPERO CRD42016047512.

Project description:BackgroundThe prevalence of dementia is increasing, and there are many associated problems that family members face as informal carers, including emotional, physical, and financial difficulties. There are benefits for a person with dementia to live at home for as long as possible, and therefore, supporting their informal carers is crucial. The growing interest in supporting carers through internet-based interventions is evidenced by the volume of systematic reviews on this topic. It is now appropriate to systematically examine this body of work and provide an overview of the literature.ObjectiveThis umbrella review aimed to identify the most effective internet-based intervention content and delivery method to support those caring for someone with dementia living in the community.MethodsPsycINFO, Web of Science, CINAHL, MEDLINE, Cochrane Library, and PubMed were searched for systematic reviews examining the effectiveness of web-based interventions for informal carers of people with dementia. A total of 3 reviewers extracted data and evaluated the quality of the papers. To ascertain the extent to which the systematic reviews reported on the same evidence, the proportion of overlap between their included studies was calculated. Qualitative research findings were extracted and reported.ResultsA total of 21 papers were included in the study. The quality of the review papers was mainly rated as low to moderate, and 10% (2/21) of papers were of high quality. The findings suggest that multicomponent interventions were the most effective in supporting carers. These included combinations of cognitive behavioral therapy and relaxation strategies, educational resources, and online support groups. Interventions that were delivered on the web but included sessions with a personal element, such as telephone contact, showed the best results. When comparing the studies reviewed in all the review papers, a moderate overlap was noted. However, when comparing individual reviews with each other, they showed a high overlap of the included studies.ConclusionsMixed delivery methods and intervention content showed the most effective results in supporting those caring for people with dementia. However, many papers do not separate the results for differing intervention contents or delivery; this needs to be considered when drawing conclusions. There was an overlap among the studies included in the reviews. This suggests a lack of current research on the effectiveness of web-based interventions for people caring for a person with dementia. There was also a lack of consistency in the outcome measures across all papers. Future studies can involve updating research on the effectiveness of these interventions while distinguishing between different intervention types, thus creating guidelines for the use of standardized measures to enable comparisons of intervention effects and improve the scientific quality of the overall research.Trial registrationPROSPERO CRD42021241559; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=241559.

Project description:Objectives(1) To develop an understanding of how social capital may be conceptualised within the context of end-of-life care and how it can influence outcomes for people with dementia and their families with specific reference to the context and mechanisms that explain observed outcomes. (2) To produce guidance for healthcare systems and researchers to better structure and design a public health approach to end-of-life care for people with dementia.DesignA realist review.Data sourcesMEDLINE, EMBASE, CINAHL and grey literature.AnalysisWe conceptualised social capital as a complex intervention and, in order to understand how change is generated, used realist evaluation methods to create different configurations of context, mechanism and outcomes. We conducted an iterative search focusing on social capital, social networks and end-of-life care in dementia. All study designs and outcomes were screened and analysed to elicit explanations for a range of outcomes identified. Explanations were consolidated into an overarching programme theory that drew on substantive theory from the social sciences and a public health approach to palliative care.ResultsWe identified 118 articles from 16 countries ranging from 1992 to 2018. A total of 40 context-mechanism-outcome configurations help explain how social capital may influence end-of-life care for people with dementia. Such influence was identified within five key areas. These included: (1) socially orientating a person with dementia following diagnosis; (2) transitions in the physical environment of care; (3) how the caregiving experience is viewed by those directly involved with it; (4) transition of a person with dementia into the fourth age; (5) the decision making processes underpinning such processes.ConclusionThis review contributes to the dispassionate understanding of how complex systems such as community and social capital might be viewed as a tool to improve end-of-life care for people with dementia.Prospero registration numberCRD42018084524.

Project description:BackgroundBefriending is a popular way in which to intervene to combat loneliness and social isolation among older people. However, there is a need to improve our understanding about how these interventions work, for whom and in which contexts, to make the best use of the increasing investment in the provision and delivery of befriending services.MethodsA realist evaluation was undertaken as it focuses on uncovering causal processes and interactions between mechanisms and contextual characteristics. Five case studies of befriending programmes in Northern Ireland were studied, reflecting variation in contextual variables, service user and provider characteristics. Data was collected via service documentation and semi-structured interviews (n = 46) with stakeholders involved in the delivery and receipt of befriending interventions.ResultsEight initial programme theories were generated, which were 'tested' in the case study analysis to uncover context-mechanism-outcome relationships. Mechanisms identified included reciprocity, empathy, autonomy, and privacy which were triggered in different contexts to support the alleviation of loneliness and social isolation. Reciprocity was 'triggered' in contexts where service users and befrienders shared characteristics, the befriender was a volunteer and befriending took the form of physical companionship. Contexts characterised in terms of shared experiences between befriender and service user triggered empathy. Autonomy was triggered in contexts where befriending relationships were delivered long-term and did not focus on a pre-defined set of priorities. Privacy was triggered in contexts where service users had a cognitive/sensory impairment and received one-to-one delivery.ConclusionThis study improves understanding about how and why befriending interventions work. Findings indicate that services should be tailored to the needs of service users and take into consideration characteristics including mobility, impairments e.g. physical, sensory and/or cognitive, as well as the influence of service characteristics including payment for befrienders, fixed/long-term befriending relationship, one-to-one support and the impact of non-verbal communication via face-to-face delivery.