Implementation and dissemination of home- and community-based interventions for informal caregivers of people living with dementia: a systematic scoping review
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SUBMITTER: Zhu E
PROVIDER: S-EPMC10631024 | biostudies-literature | 2023 Jan
REPOSITORIES: biostudies-literature
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Project description:IntroductionAgeing in place, supported by formal home and community services and informal caregivers, is the most used long-term care option for people with dementia (PwD). Informal caregivers are inundated by their caregiving responsibilities and resultantly suffer consequences. Despite the multitude of clinical effectiveness studies on interventions that support informal caregivers, there is a paucity of information regarding their implementation process. This scoping review aims to identify the implementation strategies, implementation outcomes, and barriers and facilitators that impede or support the dissemination and uptake of interventions that support informal caregivers of PwD at home.Methods and analysisThis protocol is guided by the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) Protocols, and the scoping review will follow the systematic steps of the PRISMA-Extension for Scoping Reviews guideline. The search strategy will include publications produced from inception to 8 March 2021 and will be conducted in the search engines Embase, Medline (Ovid), Web of Science and Cochrane Central Register of Controlled Trials (Wiley), followed by a three-stage approach. First, title and abstracts will be screened by two independent reviewers. Second, full-text articles will also be screened by both reviewers and, in case of disagreement, by a third reviewer. The first two stages are based on a set of inclusion and exclusion criteria. Reference lists of the final included studies will also be checked for relevant articles. Data from the final included studies will be extracted and synthesised using the Expert Recommendations for Implementing Change compilation and Proctor's implementation outcomes to ensure homogenous and standardised reporting of implementation information.Ethics and disseminationThe review findings will be published in a peer-reviewed journal and disseminated at geriatric and implementation conferences to inform researchers, health service planners and practice professionals with an overview of the existing literature to guide them in the effective implementation of caregiver-focused interventions in dementia support.
| S-EPMC8804630 | biostudies-literature
Project description:BackgroundWeb-based interventions aimed at supporting informal caregivers of people living with dementia have the potential to improve caregivers' well-being and psychological health. However, few interventions are widely implemented for this population, and none of the prior reviews have systematically examined the use of behavior change techniques (BCTs), theories, and agents in web-based interventions for informal caregivers of people living with dementia. To better understand this implementation gap, we reviewed the literature to map behavioral factors (BCTs, theories, and agents) deployed in the studies. Furthermore, because there is an emerging consensus that retention could be shaped by participant characteristics and behavioral factors, we explored relationships between these features and retention rates across studies.ObjectiveWe pursued 3 objectives: to map behavioral factors involved in the web-based interventions for informal caregivers of people living with dementia; to examine the relationship between behavioral change elements and retention in the studies; and to examine the relationship between participant characteristics (gender, age, and spouse or adult children caregiver proportion) and study retention.MethodsWe conducted a literature review using the following keywords and their corresponding Medical Subject Headings terms: dementia, caregivers, and web-based intervention. The time limits were January 1998 to March 2022. Using the BCTv1 taxonomy, which specifies active behavioral components in interventions, 2 coders collected, summarized, and analyzed the frequency distributions of BCTs. Similarly, they abstracted and analyzed participant characteristics, behavior change theories, behavior change agents, and retention rates in the studies.ResultsThe average age was 61.5 (SD 7.4) years, and the average proportion of spousal informal caregivers, adult children informal caregivers, and retention rates were 51.2% (SD 24.8%), 44.8% (SD 22%), and 70.4% (SD 17%), respectively. Only 53% (17/32) of the studies used behavior change theories, but 81% (26/32) included behavior change agents. The most common BCTv1 clusters were shaping knowledge and social support. The median number of BCTv1 clusters was 5 (IQR 3). We observed a negative correlation between the proportion of spousal informal caregivers and the retention rate (r=-0.45; P=.02) and between the number of BCTv1 clusters and retention rates (r=-0.47; P=.01). We also found that the proportion of adult children informal caregivers in the study was significantly and positively correlated with the retention rate (r=0.5; P=.03). No other participant characteristics or behavioral factors were associated with retention rates.ConclusionsWe found that almost half of the studies were not informed by behavior change theories. In addition, spousal involvement and a higher number of BCTs were each associated with lower retention rates, while the involvement of adult children caregivers in the study was associated with higher retention. In planning future studies, researchers should consider matching participant characteristics with their intended intervention as the alignment might improve their retention rates.
| S-EPMC9305400 | biostudies-literature
Project description:Dementia increases dependence in older adults and decreases their quality of life and that of their family members. These family members often take on the responsibility of caregiving and suffer from burden and health deterioration due to facing various stressors. The aim is to verify the effectiveness of existing interventions aimed at relieving the burden and stress of informal caregivers of older people with dementia. A scoping review was conducted by consulting the Web of Science, Scopus, ProQuest, and PubMed databases, following the guidelines of the PRISMA 2020 Statement. The review protocol has been registered in PROSPERO under number CRD42024558609. Twenty-six articles met the inclusion criteria and were reviewed, studying the type of intervention design, the sample size of caregivers and their main characteristics, the duration and follow-up, and the variables investigated with their respective measurement instruments. The analysis of the different studies showed that the most developed types of interventions are psychoeducational and cognitive-behavioral therapies, both individual and group. These interventions were mainly effective in reducing the burden and depressive symptoms of caregivers. It is considered advisable to implement more randomized controlled trials for further research, because as the number of caregivers increases, so does the need for affordable and effective interventions.
| S-EPMC11417853 | biostudies-literature
Project description:Objectives:The objectives were to (1) systematically review the literature on the implementation of eHealth interventions for informal caregivers of people with dementia, and (2) identify determinants of successful implementation. Methods:Online databases were searched for articles about eHealth interventions for informal caregivers of people with dementia, providing information on their implementation. Articles were independently screened and inductively analyzed using qualitative analysis. The analysis was mapped onto the Consolidated Framework for Implementation Research (CFIR; Damschroder et al., 2009). Findings:46 articles containing 204 statements on implementation were included. The statements on implementation were grouped into four categories: Determinants associated with the eHealth application, informal caregiver, implementing organization, or wider context. Mapping of the determinants on the CFIR revealed that studies have focused mostly on characteristics of the intervention and informal caregiver. Limited attention has been paid to organizational determinants and the wider context. Conclusions:Despite prolific effectiveness and efficacy research on eHealth interventions for caregivers of people with dementia, there is a critical dearth of implementation research. Furthermore, there is a mismatch between eHealth intervention research and implementation frameworks, especially concerning organizational factors and wider context. This review underscores the importance of future implementation research in bridging the gap between research and practice.
| S-EPMC6112102 | biostudies-literature
Project description: Not available
| S-EPMC6573123 | biostudies-literature
Project description:ObjectiveThe objective of this proposed scoping review is to identify and map the available evidence on interventions that aim to help informal caregivers identify and/or manage delirium in an older person at home.IntroductionDelirium is a neurocognitive condition characterized by acute confusion and is associated with increased risk of morbidity and mortality. Research estimates delirium to be present in 17% of community-dwellers aged 85 and older, increasing proportionally with age to 45% in those aged 90 and older. Delirium often occurs at the onset of an older person's acute illness or exacerbation of a chronic illness (sometimes while at home) and, because of its protracted nature, usually continues after a hospital stay. Even when an older person's delirium resolves during hospitalization, they remain at risk of its recurrence after discharge home. Consequently, knowing how to detect and manage delirium is critical for informal caregivers of older people at home. However, there are no reviews focused exclusively on this topic in this setting.Inclusion criteriaThe population of interest includes informal caregivers of a person aged 65+. Concepts of interest include delirium detection and/or management interventions. The context of interest is any setting where informal care is delivered, including the transition from hospital to home, in any geographical area.Materials and methodsThe review will be conducted according to the JBI guidelines for scoping reviews. A three-step search strategy will be used to locate both published and unpublished papers in MEDLINE, Embase, CINAHL, PsycINFO, Web of Science Core Collection, ProQuest Nursing & Allied Health, SCOPUS, LILACS, and SciELO, PQD&T, NDLTD, Google Scholar and Google. No language restrictions will be placed on the review. Papers will be screened for eligibility at the title, abstract, and full text level by two independent reviewers. Data will be extracted by two independent reviewers and managed in Covidence. Any disagreements in screening or data extraction will be resolved by consensus or a third reviewer. Results will be summarised in narrative and tabular formats.
| S-EPMC11414944 | biostudies-literature
Project description:Objectives: With the increasing prevalence of dementia worldwide, there is a growing need for an integrated approach to dementia care. Little is known at present about the benefits of educational interventions for informal caregivers of people living with dementia (PLWD) in low- and middle-income countries (LMICs). This review aimed to identify and synthesise the current research on these interventions. Method: Four databases (PsycINFO, Medline, Web of Sciences and Scopus) were searched, alongside Google Scholar and reference lists. The Downs and Black checklist was used for quality assessment and data relating to intervention characteristics, outcomes, and educational component features were compared. Results: Eighteen papers detailing 17 studies were included. All studies presented found at least one significant outcome/effect. Study comparison was difficult due to diverse methodologies, intervention structures, and outcomes. Study quality was also variable. Four studies had education as the primary focus, and most interventions utilised multicomponent and group-based designs. Interventions that included group delivery tended to find more significant results than individual approaches. Intervention length did not appear to influence efficacy. Regular delivery and an average intervention dosage of around 12 h appeared most effective. Conclusions: Research into educational interventions for caregivers in LMICs appears to be promising and can help guide future interventions towards clinical implementation. A multicomponent group intervention trialled in Egypt provided particularly favourable findings. Future studies should focus on understanding the active mechanisms within such interventions to optimize their effectiveness. Collaboration between LMICs, high-income countries (HICs), and caregivers is crucial in developing interventions tailored to meet caregiver needs whilst accounting for feasibility and equity for dementia care worldwide.
| S-EPMC10968231 | biostudies-literature
Project description:BackgroundThe daily life of informal caregivers assisting individuals with dementia widely varies throughout the day and week. As an answer, an increasing number of researchers have used intensive longitudinal methods (ILMs) such as diary studies, experience sampling methods, or ecological momentary assessment.Objectives and methodsThe present scoping review aims at synthesizing the use of ILMs in informal dementia caregivers to clarify what is currently done and how, as well as what remains unaddressed.ResultsThe screening process identified 48 studies from 22 different datasets. Synthesis of these studies showed the diversity of devices and uses of ILMs in informal care, including the exploration of associations between variables or accompanying an intervention. ILMs showed the important variability of caregiving phenomena, as well as the important association of momentary stress and well-being. Gaps were nevertheless identified, such as transparency in the construction of the tool or the absence of focus on emotions and dyads.ConclusionsFor now, this field of research remains in its infancy and does not seem to have reached its full potential as it has in other fields. Nevertheless, it appears that ILMs are promising tools for informal dementia caregivers as they contribute to understanding the complexity of their daily life, with changing resources and challenges. Future directions include focusing more on (emotion) regulation, temporal lags, and the use of ILMs in interventional designs.Trial registrationThe present review was registered on OSF (osf.io/b2qr4).
| S-EPMC10367249 | biostudies-literature
Project description:Abstract Background The transition from home to a nursing home is a common care process experienced by older persons with dementia and their informal caregivers. This transition process is often experienced as fragmented and is paired with negative outcomes for both older persons (e.g. mortality) and informal caregivers (e.g. grief). Due to the central role that informal caregivers play, it is crucial to capture their experiences throughout all phases of the transition. Methods A secondary data analysis was conducted using an interpretative phenomenological design. A total of 24 informal caregivers of older persons with dementia, moving to a nursing home, participated in in-depth interviews. Data were collected between February 2018 and July 2018 in the Netherlands. Data were analysed using Interpretative Phenomenological Analysis. Results The transition experiences are characterised by three paradoxes: (i) contradicting emotions during the transition process; (ii) the need for a timely transition versus the need to postpone the transition process and (iii) the need for involvement versus the need for distance. All paradoxes are influenced by the healthcare system. Conclusions The identified paradoxes show the impact of the healthcare system and the importance of timely planning/preparing for this transition on the experiences of informal caregivers. In addition, it provides healthcare professionals insight into the thought processes of informal caregivers. Future research can use these paradoxes as a foundation to develop innovations aiming to improve the transition process from home to a nursing home for informal caregivers and, consequently, older persons.
| S-EPMC8824707 | biostudies-literature
Project description:Introduction and purposeInformal caregivers of persons living with dementia have significant unmet information needs that, if met, would better equip them to provide effective care. Despite the existence of health information technologies, websites, resources, and organizations dedicated to dementia caregiving, caregivers continue to report unmet information needs. Caregivers' continued unmet information needs suggest a misalignment between information products, and caregivers' information behavior-how caregivers generate, acquire, manage, use, communicate, and seek information. Researchers have developed conceptual models for understanding caregivers' information behavior, but these models are limited in that they are task-oriented, and they assume that caregivers' information needs will be met if they engage in information behavior. To address these limitations, the present study sought to explore caregivers' information behavior as a sociotechnical-systems-based process.MethodsWe conduced semi-structured interviews with 30 self-identified caregivers to explore their daily experience of caregiving activities, including their information behavior. We applied a process-based conceptual framework that takes into account inputs, processes, outputs, and feedback mechanisms within a sociotechnical system to guide analysis. The process of interest was caregivers' information behavior as modeled by the information-seeking and communication model (ISCM). We conducted a deductive content analysis guided by the components of the ISCM. We then used team-based affinity diagramming to collapse and categorize the ISCM components into inputs, processes, outputs, and feedback.ResultsWe developed a conceptual model to depict caregivers' information behavior as a sociotechnical-systems-based process of inputs, processes, and outputs that feedback into the system. The conceptual model consisted of three inputs (i.e., information users, information providers, and information products), three information seeking and communication processes (i.e., information access, information interaction, and information assessment and processing), two outputs (i.e., utility and credibility), and feedback.Discussion and conclusionBuilding on and addressing the gaps in previous information behavior models, our conceptual framework advances the previous task-level understandings of caregivers' information behavior into a comprehensive feedback-driven, process-level perspective consisting of context-based inputs, information seeking and communication processes, outputs, and feedback. A sociotechnical-systems-based understanding of caregivers' information behavior allows for misalignments between information providers and products, and caregivers' information behavior not only to be illuminated, but systematically addressed.
| S-EPMC8045462 | biostudies-literature