Dataset Information

How do community based dementia friendly initiatives work for people with dementia and their caregivers, and why? A rapid realist review.

ABSTRACT:

Objectives

To describe and explain the outcomes of community dementia friendly initiatives (DFIs) for people with dementia and their caregivers to inform the development and tailoring of DFIs.

Methods

Literature searches on DFIs were performed through two systematic online database searches of PubMed, Embase, ASSIA, CINAHL and Google scholar. Papers were only included if they evaluated outcomes using empirical data from people with dementia or caregivers. Data collection and analysis were guided by the categorization in the DEM-FACT taxonomy and RAMESES guidelines for realist reviews.

Results

Of 7154 records identified, 22 papers were included with qualitative, mixed method and quantitative study designs. The synthesis led to a description of programme theories addressing caring, stimulating and activating communities. Outcomes for people with dementia and caregivers included having contact with others, enjoyment and decrease of stress and, lastly, support. This synthesis also indicated how people with dementia participated in a specific role in DFIs, such as patient, team member or active citizen.

Conclusions

DFIs generate different outcomes for people with dementia and caregivers, depending on the kind of initiative and the specific role for people with dementia. These findings could be a catalyst for initiation and further development of DFIs in a dementia friendly community (DFC). This draws attention to the multiple aspects of DFCs and supports reflection on their essential principles.

SUBMITTER: Thijssen M

PROVIDER: S-EPMC9299867 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

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:ObjectivesCommunity-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.MethodsKey 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.ResultsAbility 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.ConclusionsThis 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.

Project description:BackgroundCommunity engagement is increasingly seen as crucial to achieving high quality, efficient and collaborative care. However, organisations are still searching for the best and most effective ways to engage citizens in the shaping of health and care services. This review highlights the barriers and enablers for engaging communities in the planning, designing, governing, and/or delivering of health and care services on the macro or meso level. It provides policymakers and professionals with evidence-based guiding principles to implement their own effective community engagement (CE) strategies.MethodsA Rapid Realist Review was conducted to investigate how interventions interact with contexts and mechanisms to influence the effectiveness of CE. A local reference panel, consisting of health and care professionals and experts, assisted in the development of the research questions and search strategy. The panel's input helped to refine the review's findings. A systematic search of the peer-reviewed literature was conducted.ResultsEight action-oriented guiding principles were identified: Ensure staff provide supportive and facilitative leadership to citizens based on transparency; foster a safe and trusting environment enabling citizens to provide input; ensure citizens' early involvement; share decision-making and governance control with citizens; acknowledge and address citizens' experiences of power imbalances between citizens and professionals; invest in citizens who feel they lack the skills and confidence to engage; create quick and tangible wins; take into account both citizens' and organisations' motivations.ConclusionsAn especially important thread throughout the CE literature is the influence of power imbalances and organisations' willingness, or not, to address such imbalances. The literature suggests that 'meaningful participation' of citizens can only be achieved if organisational processes are adapted to ensure that they are inclusive, accessible and supportive of citizens.

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:ObjectiveTo identify the relationships between the context in which integrated care programmes (ICPs) for community-dwelling frail older people are applied, the mechanisms by which the programmes do (not) work and the outcomes resulting from this interaction by establishing a programme theory.DesignRapid realist review.Inclusion criteriaReviews and meta-analyses (January 2013-January 2019) and non-peer-reviewed literature (January 2013-December 2019) reporting on integrated care for community-dwelling frail older people (≥60 years).AnalysisSelection and appraisal of documents was based on relevance and rigour according to the Realist And Meta-narrative Evidence Syntheses: Evolving Standards criteria. Data on context, mechanisms, programme activities and outcomes were extracted. Factors were categorised into the five strategies of the WHO framework of integrated people-centred health services (IPCHS).Results27 papers were included. The following programme theory was developed: it is essential to establish multidisciplinary teams of competent healthcare providers (HCPs) providing person-centred care, closely working together and communicating effectively with other stakeholders. Older people and informal caregivers should be involved in the care process. Financial support, efficient use of information technology and organisational alignment are also essential. ICPs demonstrate positive effects on the functionality of older people, satisfaction of older people, informal caregivers and HCPs, and a delayed placement in a nursing home. Heterogeneous effects were found for hospital-related outcomes, quality of life, healthcare costs and use of healthcare services. The two most prevalent WHO-IPCHS strategies as part of ICPs are 'creating an enabling environment', followed by 'strengthening governance and accountability'.ConclusionCurrently, most ICPs do not address all WHO-IPCHS strategies. In order to optimise ICPs for frail older people the interaction between context items, mechanisms, programme activities and the outcomes should be taken into account from different perspectives (system, organisation, service delivery, HCP and patient).

Project description:BACKGROUND:Caring for someone with dementia is one of the most challenging caring roles. The need for support for family caregivers has been recognized for some time but is often still lacking. With an aging population, demand on health and social care services is growing, and the population is increasingly looking to the internet for information and support. OBJECTIVE:In this review, we aimed to (1) identify the key components of existing internet-based interventions designed to support family caregivers of people with dementia, (2) develop an understanding of which components are most valued by caregivers, and (3) consider the evidence of effectiveness of internet-based interventions designed to support family caregivers of people with dementia. METHODS:We conducted a systematic search of online databases in April 2018. We searched reference lists and tracked citations. All study designs were included. We adopted a narrative synthesis approach with thematic analysis and tabulation as tools. RESULTS:We identified 2325 studies, of which we included 40. The interventions varied in the number and types of components, duration and dose, and outcomes used to measure effectiveness. The interventions focused on (1) contact with health or social care providers, (2) peer interaction, (3) provision of information, (4) decision support, and (5) psychological support. The overall quality of the studies was low, making interpretation and generalizability of the effectiveness findings difficult. However, most studies suggested that interventions may be beneficial to family caregiver well-being, including positive impacts on depression, anxiety, and burden. Particular benefit came from psychological support provided online, where several small randomized controlled trials suggested improvements in caregiver mental health. Provision of information online was most beneficial when tailored specifically for the individual and used as part of a multicomponent intervention. Peer support provided in online groups was appreciated by most participants and showed positive effects on stress. Finally, online contact with a professional was appreciated by caregivers, who valued easy access to personalized practical advice and emotional support, leading to a reduction in burden and strain. CONCLUSIONS:Although mixed, the results indicate a positive response for the use of internet-based interventions by caregivers. More high-quality studies are required to identify the effectiveness of internet interventions aimed at supporting family caregivers, with particular focus on meeting the needs of caregivers during the different stages of dementia.

Project description:IntroductionPeople with dementia develop progressive difficulties conducting basic activities of daily living, often requiring considerable assistance from caregivers. Many people with dementia, particularly in the advanced stages, can refuse assistance with care leading to difficult interactions. The ways in which refusals of care can be best reduced are unknown. Using a realist approach, this study aims to develop and refine evidence-based programme theories showing which mechanisms of interventions contribute to reducing refusals of care between caregivers and people with dementia, in which contexts, how and why.Methods and analysisThe realist synthesis will be conducted in three iterative stages.Stage 1 will develop initial programme theories through secondary analysis of caregivers and persons with dementia interviews and observations, a preliminary exploratory literature review and team discussions. After initial programme theory development, the focus of the synthesis will be decided by the study team.Stage 2 will involve conducting focused, iterative and targeted literature searches to test and refine our initial programme theories considering the evidence for each setting: hospital, care home, home care and family. Data synthesis will use a realist lens to examine what works for whom in what circumstances and how, and organise related evidence to context-mechanism-outcome configurations whenever possible.Stage 3 will use stakeholder interviews to explore reactions to the programme theories and enhance validity after integration of these findings, recommendations and conclusions will be developed.Ethics and disseminationThe NHS Social Care Research Ethics Committee has approved the interview stage of this study (REC reference: 24/IEC08/0007; IRAS project ID: 338274). Informed consent will be obtained from all interviewees prior to data collection. Findings will be disseminated via peer-reviewed publications, conference presentations and accessible information for key stakeholders.Propspero registration numberCRD42024496072.