Dataset Information

Collaboration for Developing and Sustaining Community Dementia-Friendly Initiatives: A Realist Evaluation.

ABSTRACT:

Background

Dementia-friendly communities (DFCs) are seen as key to the inclusion and participation of people with dementia and carers. Dementia-friendly initiatives (DFIs) are important building blocks for the growth of DFCs. The collaboration between different stakeholders is a central aspect in developing and sustaining DFIs.

Aim

This study tests and refines an initial theory about collaborating for DFIs with special attention for the involvement of people with dementia and their carers during the collaboration for DFIs. The realist approach is used for deepening contextual aspects, mechanisms, outcomes, and its explanatory power.

Methods

A participatory case study design using qualitative data (focus groups, observations, reflections, minutes from meetings, and exit interviews) was executed in four Dutch municipalities that have ambitions to become dementia- friendly communities.

Results

The refined theory on the collaboration for DFIs incorporates contextual aspects such as diversity, shared insights, and clarity. It draws attention to the importance of mechanisms such as the recognition of efforts and progress, informal distributed leadership, interdependency, belonging, significance, and commitment. These mechanisms resonate with feeling useful and feeling collectively powerful in the collaboration. The outcomes of collaboration were activation, getting new ideas, and fun. Our findings address how stakeholders' routines and perspectives impact the involvement of people with dementia and their carers during collaboration.

Conclusion

This study provides detailed information about collaboration for DFIs. The collaboration for DFIs is largely influenced by feeling useful and collectively powerful. Further research is needed to understand how these mechanisms can be triggered with the involvement of people with dementia and their carers in the heart of the collaboration.

SUBMITTER: Thijssen M

PROVIDER: S-EPMC10001691 | biostudies-literature | 2023 Feb

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Collaboration for Developing and Sustaining Community Dementia-Friendly Initiatives: A Realist Evaluation.

Thijssen Marjolein M Graff Maud J L MJL Lexis Monique A S MAS Nijhuis-van der Sanden Maria W G MWG Radford Kate K Logan Pip A PA Daniels Ramon R Kuijer-Siebelink Wietske W

International journal of environmental research and public health 20230223 5

<h4>Background</h4>Dementia-friendly communities (DFCs) are seen as key to the inclusion and participation of people with dementia and carers. Dementia-friendly initiatives (DFIs) are important building blocks for the growth of DFCs. The collaboration between different stakeholders is a central aspect in developing and sustaining DFIs.<h4>Aim</h4>This study tests and refines an initial theory about collaborating for DFIs with special attention for the involvement of people with dementia and thei ...[more]

PMID: 36901017

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Project description:BackgroundGlobally, dementia care is under strain. Rising rates across ageing populations, coupled with overstretched health and care systems, mean that people living with dementia and their carers are missing out on crucial support. Addressing dementia care is a key priority for the UK government. This has led to a period of care transformation, including the implementation of new dementia support services across integrated care systems (ICS). However, little is known about how these new services work. This evaluation identifies how a dementia care coordinator service, implemented in the largest ICS in England, works for people living with dementia, their carers and the workforce.MethodsA realist evaluation using mixed methods was carried out between 2022 and 2024. This involved a repeat survey with dementia care coordinators, carried out a year apart, alongside 57 interviews with coordinators, service managers, healthcare practitioners, people living with dementia and their carers. A realist logic of analysis was applied across all data sets.ResultsThree broad concepts were identified including (1) workforce design and organisational culture, (2) meeting the needs of people living with dementia and their carers and (3) connecting to services and integrating care. A total of 23 context-mechanism-outcome configurations (CMOCs) across these concepts highlighted that whilst tensions exist between the service and wider system, dementia care coordinators ultimately act as bridge builders, connecting people to much-needed support. However, services like this could become a victim of their own success due to increasing caseloads and the risk of staff burnout.ConclusionsThe dementia care coordinator service is capable of supporting people who are pre- and post-dementia diagnosis despite the care system being under strain. This is a direct result of the bridge building work of the dementia care coordinators. Our findings support evidence-based recommendations for those wanting to implement and sustain a system-wide service and provide evidence for policy makers to consider increased funding for this service nationwide.

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:BackgroundThe aim of this study is to 1) explore the experiences of people living with dementia interacting with DFCs and 2) identify factors that influence empower and support people living with dementia to live successfully in DFCs. The main elements of a DFC are related to people; communities; organisations and partnerships. There are over 200 organisations recognised as dementia-friendly in Northern Ireland (NI). This realist evaluation is to understand how DFCs work for people living with dementia, how positive outcomes are achieved, for whom and in what contexts do DFCs work best.MethodsA realist evaluation using case study methodology. The process evaluation includes a realist review of the literature, non-participant observation of people living with dementia in their local communities, semi-structured interviews to explore the facilitators and barriers to living well in DFCs and focus groups comprised of people living with dementia, family caregivers and people working in DFCs to support Context- Mechanisms and Outcomes (CMOs). This four-stage realist assessment cycle is used, including iterative rounds of theory development, data gathering, and theory testing. In the end, analysis will reveal context mechanisms that influence how dementia-friendly communities operate and present an initial theory of how people think, which, if adopted, may be able to alter current contexts so that "key" mechanisms are activated to generate desired outcomes.DiscussionTo give confidence in moving from hypothetical constructions about how DFCs could function to explanations of possible or observable causal mechanisms, the realist evaluation of a complex intervention incorporates a variety of evidence and perspectives. Despite playing a significant role in a person with dementia's everyday life, it appears that little is known about how communities function to achieve intended results. Even though there has been a lot of work to pinpoint the fundamentals and crucial phases of building DFCs, it is still unclear how people living with dementia benefit the most from these communities. This study intends to advance our understanding of how outcomes are produced for people living with dementia by contributing to the underlying theory of DFCs as well as addressing the primary research objectives.

Project description:ObjectivesTo apply and evaluate dementia-friendly community (DFC) principles in prisons.DesignA pilot study and process evaluation using mixed methods, with a 1-year follow-up evaluation period.SettingTwo male prisons: a category C sex offender prison (prison A) and a local prison (prison B).Participants68 participants-50 prisoners, 18 staff.InterventionThe delivery of dementia information sessions, and the formulation and implementation of dementia-friendly prison action plans.MeasuresStudy-specific questionnaires; Alzheimer's Society DFC criteria; semi-structured interview and focus group schedules.ResultsBoth prisons hosted dementia information sessions which resulted in statistically significant (p>0.05) increases in attendees' dementia knowledge, sustained across the follow-up period. Only prison A formulated and implemented a dementia action plan, although a prison B prisoner dedicated the prisoner magazine to dementia, post-information session. Prison A participants reported some progress on awareness raising, environmental change and support to prisoners with dementia in maintaining independence. The meeting of other dementia-friendly aims was less apparent. Numbers of older prisoners, and those diagnosed with dementia, appeared to have the greatest impact on engagement with DFC principles, as did the existence of specialist wings for older prisoners or those with additional care needs. Other barriers and facilitators included aspects of the prison institution and environment, staff teams, prisoners, prison culture and external factors.ConclusionsDFC principles appear to be acceptable to prisons with some promising progress and results found. However, a lack of government funding and strategy to focus action around the escalating numbers of older prisoners and those living with dementia appears to contribute to a context where interventions targeted at this highly vulnerable group can be deprioritised. A more robust evaluation of this intervention on a larger scale over a longer period of time would be useful to assess its utility further.

Project description:BackgroundIn response to the significant increase in the global aging population, countries have increasingly prioritized Age-Friendly Primary Health Care (AFPHC) to address the unique needs of older adults. This study aims to develop a comprehensive model for assessing the progress of PHC systems in achieving the goals of an elderly-centered services.MethodA qualitative study design was utilized to develop the progress assessment model for AFPHC initiatives. This process involved a literature review (academic databases and manual search), semi-structured interviews, an expert panel discussion, and the Delphi technique for achieving consensus on the final model. Participants in the semi-structured interviews were selected based on specific inclusion criteria, which required professionals and stakeholders to have a minimum of two years of experience in care for older adults and active involvement in PHC. Additionally, older adults with a university education who had accessed PHC services in Iran at least three times were included. The expert panel was composed of multidisciplinary professionals who met similar criteria, ensuring a diverse and informed perspective.FindingsAccording to literature review results, 16 main domains and 28 sub-domains were identified. In the next step, through interviews, 7 main domains and 71 indicators were extracted. After summarizing the results of literature reviews, and interviews, and analyzing the results of the Delphi technique, the initial model with 7 main domains, including policymaking and planning processes related to older adults, principles of respect and interaction with older adults, education for older adults, principles of care and provision of services to older adults, access to PHC facilities, physical environment, specialized facilities and equipment, and human resources, was finalized along with the 60 indicators.ConclusionThe developed model for assessing progress of AFPHC Initiatives offers a comprehensive framework by focusing on key domains and indicators tailored to the needs of older adults. This model serves as a practical tool for assessing the progress of AFPHC, facilitating improvements in the quality and accessibility of PHC services for older adults.

Project description:Increasingly, it is being suggested that translational gaps might be eradicated or narrowed by bringing research users and producers closer together, a theory that is largely untested. This paper reports a national study to fill a gap in the evidence about the conditions, processes and outcomes related to collaboration and implementation.A longitudinal realist evaluation using multiple qualitative methods case studies was conducted with three Collaborations for Leadership in Applied Health Research in Care (England). Data were collected over four rounds of theory development, refinement and testing. Over 200 participants were involved in semi-structured interviews, non-participant observations of events and meetings, and stakeholder engagement. A combined inductive and deductive data analysis process was focused on proposition refinement and testing iteratively over data collection rounds.The quality of existing relationships between higher education and local health service, and views about whether implementation was a collaborative act, created a path dependency. Where implementation was perceived to be removed from service and there was a lack of organisational connections, this resulted in a focus on knowledge production and transfer, rather than co-production. The collaborations' architectures were counterproductive because they did not facilitate connectivity and had emphasised professional and epistemic boundaries. More distributed leadership was associated with greater potential for engagement. The creation of boundary spanning roles was the most visible investment in implementation, and credible individuals in these roles resulted in cross-boundary work, in facilitation and in direct impacts. The academic-practice divide played out strongly as a context for motivation to engage, in that 'what's in it for me' resulted in variable levels of engagement along a co-operation-collaboration continuum. Learning within and across collaborations was patchy depending on attention to evaluation.These collaborations did not emerge from a vacuum, and they needed time to learn and develop. Their life cycle started with their position on collaboration, knowledge and implementation. More impactful attempts at collective action in implementation might be determined by the deliberate alignment of a number of features, including foundational relationships, vision, values, structures and processes and views about the nature of the collaboration and implementation.

Dataset Information

Collaboration for Developing and Sustaining Community Dementia-Friendly Initiatives: A Realist Evaluation.

Background

Aim

Methods

Results

Conclusion

Publications

Collaboration for Developing and Sustaining Community Dementia-Friendly Initiatives: A Realist Evaluation.

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