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Background: Dementia is a multi-factorial condition rather than a natural and inevitable consequence of ageing. Some factors related to dementia have been studied much more extensively than others. To gain an overview of known or suspected influential factors is a prerequisite to design studies that aim to identify causal relationships and interactions between factors. This article aims to develop a visual model that a) identifies factors related to cognitive decline that signal the onset of dementia, b) structures them by different domains and c) reflects on and visualizes the possible causal links and interactions between these factors based on expert input using a causal loop diagram., Method: We used a mixed-method, step-wise approach: 1. A systematic literature review on factors related to cognitive decline; 2. A group model building (GMB) workshop with experts from different disciplines; 3. Structured discussions within the group of researchers. The results were continuously synthesized and graphically transformed into a causal loop diagram., Results: The causal loop diagram comprises 73 factors that were structured into six domains: physical (medical) factors (23), social health factors (21), psychological factors (14), environmental factors (5), demographic factors (5) and lifestyle factors (3). 57 factors were identified in the systematic literature review, additionally 16 factors, mostly of the social health cluster, were identified during the GMB session and the feedback rounds., Conclusion: The causal loop diagram offers a comprehensive visualisation of factors related to cognitive decline and their interactions. It supports the generation of hypotheses on causal relationships and interactions of factors within and between domains., (© 2022. The Author(s).)

Background: General practitioners (GPs) are advised to offer advance care planning (ACP) to people with dementia (PWD). In a randomized controlled trial, an educational intervention for GPs aimed at initiating and optimizing ACP proved to be effective. During the intervention most GPs were accompanied by their practice nurse (PN). To provide insights into the intervention's successful components and what could be improved, we conducted a process evaluation and explored implementation, mechanisms of impact and contextual factors., Methods: We used the Medical Research Council guidance for process evaluations. Implementation was explored identifying reach and acceptability. We performed descriptive analyses of participants' characteristics; selection, inclusion and intervention attendance; a GP post-intervention survey on initiating ACP; a post intervention focus group with trainers of the intervention. Mechanisms of impact were explored identifying adoption and appropriateness. We used: participants' intervention ratings; a GP post-intervention survey on conducting ACP; ACP documentation in PWD's medical files; post-intervention interviews with PWD/FC dyads. All data was used to identify contextual factors., Results: The intervention was implemented by a small percentage of the total Dutch GP population invited, who mostly included motivated PWD/FC dyads with relatively little burden, and PWD with limited cognitive decline. The mechanisms of impact for GPs were: interactively learning to initiate ACP with training actors with a heterogeneous group of GPs and PNs. For PWD/FCs dyads, discussing non-medical preferences was most essential regarding their SDM experience and QoL. Some dyads however found ACP stressful and not feasible. Younger female GPs more often initiated ACP. Male PWD and those with mild dementia more often had had ACP. These characteristics and the safe and intimate training setting, were important contextual facilitators., Conclusion: We recommend Interventions aimed at improving ACP initiation with PWD by GPs to include interactive components and discussion of non-medical preferences. A safe environment and a heterogeneous group of participants facilitates such interventions. However, in practice not all FC/PWD dyads will be ready to start. Therefore, it is necessary to check their willingness when ACP is offered.

Background: Implementation of integrated primary care is considered an important strategy to overcome fragmentation and improve quality of dementia care. However, current quality indicator (QI) sets, to assess and improve quality of care, do not address the interprofessional context. The aim of this research was to construct a feasible and content-wise valid minimum dataset (MDS) to measure the quality of integrated primary dementia care., Methods: A modified Delphi method in four rounds was performed. Stakeholders (n=15) (1) developed a preliminary QI set and (2) assessed relevance and feasibility of QIs via a survey (n=84); thereafter, (3) results were discussed for content validity during a stakeholder and (4) expert consensus meeting (n=8 and n=7, respectively). The stakeholders were professionals, informal caregivers, and care organisation managers or policy officers; the experts were professionals and researchers. The final set was pilot-tested for feasibility by multidisciplinary dementia care networks., Results: The preliminary set consisted of 40 QIs. In the survey, mean scores for relevance ranged from 5.8 (SD=2.7) to 8.5 (SD=0.7) on a 9-point Likert scale, and 25% of all QIs were considered feasible to collect. Consensus panels reduced the set to 15 QIs to be used for pilot testing: 5 quality of care, 3 well-being, 4 network-based care, and 3 cost-efficiency QIs. During pilot testing, all QIs were fully completed, except for well-being QIs., Conclusion: A valid and feasible MDS of QIs for primary dementia care was developed, containing innovative QIs on well-being, network-based care and cost-efficiency, in addition to quality of care QIs. Application of the MDS may contribute to development and implementation of integrated care service delivery for primary dementia care., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: ACP enables individuals to define and discuss goals and preferences for future medical treatment and care with family and healthcare providers, and to record these goals and preferences if appropriate. Because general practitioners (GPs) often have long-lasting relationships with people with dementia, GPs seem most suited to initiate ACP. However, ACP with people with dementia in primary care is uncommon. Although several barriers and facilitators to ACP with people with dementia have already been identified in earlier research, evidence gaps still exist. We therefore aimed to further explore barriers and facilitators for ACP with community-dwelling people with dementia., Methods: A qualitative design, involving all stakeholders in the care for community-dwelling people with dementia, was used. We conducted semi-structured interviews with community dwelling people with dementia and their family caregivers, semi structured interviews by telephone with GPs and a focus group meeting with practice nurses and case managers. Content analysis was used to define codes, categories and themes., Results: Ten face to face interviews, 10 interviews by telephone and one focus group interview were conducted. From this data, three themes were derived: development of a trust-based relationship, characteristics of an ACP conversation and the primary care setting. ACP is facilitated by a therapeutic relationship between the person with dementia/family caregiver and the GP built on trust, preferably in the context of home visits. Addressing not only medical but also non-medical issues soon after the dementia diagnosis is given is an important facilitator during conversation. Key barriers were: the wish of some participants to postpone ACP until problems arise, GPs' time restraints, concerns about the documentation of ACP outcomes and concerns about the availability of these outcomes to other healthcare providers., Conclusions: ACP is facilitated by an open relationship based on trust between the GP, the person with dementia and his/her family caregiver, in which both medical and non-medical issues are addressed. GPs' availability and time restraints are barriers to ACP. Transferring ACP tasks to case managers or practice nurses may contribute to overcoming these barriers.

Introduction: This study aimed to provide insight into the merits of DementiaNet, a network-based primary care innovation for community-dwelling dementia patients., Methods: Longitudinal mixed methods multiple case study including 13 networks of primary care professionals as cases. Data collection comprised continuously-kept logs; yearly network maturity score (range 0-24), yearly quality of care assessment (quality indicators, 0-100), and in-depth interviews., Results: Networks consisted of median nine professionals (range 5-22) covering medical, care and welfare disciplines. Their follow-up was 1-2 years. Average yearly increase was 2.03 (95%-CI:1.20-2.96) on network maturity and 8.45 (95%-CI:2.80-14.69) on quality indicator score. High primary care practice involvement and strong leadership proved essential in the transition towards more mature networks with better quality of care., Discussion: Progress towards more mature networks favored quality of care improvements. DementiaNet appeared to be effective to realize transition towards network-based care, enhance multidisciplinary collaboration, and improve quality of dementia care., Competing Interests: The authors have declared that no competing interests exist.

Background: Due to the disease's progressive nature, advance care planning (ACP) is recommended for people with early stage dementia. General practitioners (GPs) should initiate ACP because of their longstanding relationships with their patients and their early involvement with the disease, however ACP is seldom applied., Aim: To determine the barriers and facilitators faced by GPs related to ACP with people with dementia., Data Sources: We systematically searched the relevant databases for papers published between January 1995 and December 2016, using the terms: primary healthcare, GP, dementia, and ACP. We conducted a systematic integrative review following Whittemore and Knafl's method. Papers containing empirical data about GP barriers and/or facilitators regarding ACP for people with dementia were included. We evaluated quality using the Mixed-Method-Appraisal-Tool and analyzed data using qualitative content analysis., Results: Ten qualitative, five quantitative, and one mixed-method paper revealed four themes: timely initiation of ACP, stakeholder engagement, important aspects of ACP the conversation, and prerequisites for ACP. Important barriers were: uncertainty about the timing of ACP, how to plan for an uncertain future, lack of knowledge about dementia, difficulties assessing people with dementia's decisional capacities, and changing preferences. Facilitators for ACP were: an early start when cognitive decline is still mild, inclusion of all stakeholders, and discussing social and medical issues aimed at maintaining normal life., Conclusion: Discussing future care is difficult due to uncertainties about the future and the decisional capacities of people with dementia. Based on the facilitators, we recommend that GPs use a timely and goal-oriented approach and involve all stakeholders. ACP discussions should focus on the ability of people with dementia to maintain normal daily function as well as on their quality of life, instead of end-of-life-discussions only. GPs need training to acquire knowledge and skills to timely initiate collaborative ACP discussions., Competing Interests: The authors have declared that no competing interests exist.

Introduction: Primary healthcare professionals will increasingly be required to manage and optimise their treatment for patients with dementia. With DementiaNet, we aim to reduce the burden of dementia on healthcare services and society through implementation and facilitation of integrated network-based care with increased dementia expertise. DementiaNet is designed as a stepwise approach including clinical leadership, quality improvement cycles and interprofessional training, which are tailor-made to the local context. For example, the composition of the network and improvement goals are tailored to the local context and availability. Here, we describe the linked evaluation study which aims to provide insight in effectiveness, process and mechanism of the DementiaNet approach through an innovative evaluation design., Methods and Analysis: We designed a longitudinal, mixed methods, multiple case study. Study population consists of two levels: (i) local DementiaNet networks of primary care professionals and (ii) patients and informal caregivers who receive care from these networks. At the start and after 12 and 24 months, quantitative data are collected for each network on: level of network maturity, quality of care indicators and outcomes reported by informal caregivers of dementia patients. We assess changes in networks over time and the association with quality of care and informal caregiver-reported outcomes. Throughout the study, logs about each network are registered. Additionally, semi-structured interviews with network members and informal caregivers will provide insight in experiences and opinions regarding effects and mechanisms through which changes in quantitative outcomes are effectuated. Rich narratives will be constructed about the development of the local networks using collected data., Ethics and Dissemination: The study protocol was reviewed by the local medical ethics committee; formal judgement was not required (protocol number: 2015-2053). The findings of this study will be disseminated through peer-reviewed publications, conference presentations and presentations for healthcare professionals where appropriate., Competing Interests: Competing interests: None declared., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)

Introduction: The rising incidence and policies to keep dementia patients in their own homes are increasingly putting pressure on primary care systems and budgets. The DementiaNet program stimulates development of primary care networks of medical, nursing and welfare professionals for community-dwelling dementia patients through practice facilitation. This study aimed to provide insight into the merits and drawbacks of this program, mechanisms and which contextual factors influenced them. Methods: In this longitudinal mixed methods multiple case study, primary care professionals with shared caseloads of dementia patients, were enrolled to form networks in the DementiaNet program. Data collection consisted of continuously kept logs, yearly structured interviews to rate the network maturity score (range 0-24), yearly quality of care assessment through a sum score of quality indicators (range 0-100), and in-depth interviews regarding experiences and perceived effects. Quantitative data were analyzed through mixed models; qualitative data with thematic analysis. Results were integrated by combined interpretation. Results: Thirteen networks were successfully initiated in the program, consisting of a median of 9 professionals. Overall, the networks showed an average yearly increase of 2.03 (95% CI 1.20-2.96) on network maturity and 8.45 (95% CI 2.80-14.69) on quality indicator sum scores. Mixed methods interpretation revealed patterns regarding network and contextual factors enabling the transition towards more mature networks and better quality of care. Discussion: Time trends in network maturity and quality of care indicators showed overall improvements. Several enabling factors for the transition to network-based care were identified including strong and adequate leadership (preferably with leaders from primary care practice), high involvement of motivated primary care physicians, high acquaintanceship with other network members, and network seize with a compact network that operates in a relatively small geographical area. Conclusions: Participation in the DementiaNet program was associated with increased network maturity and subsequent beneficial effects on quality of care. Adaptation towards a more mature network seemed to favour quality of care improvements. Lesson learned: The multiple case study design demonstrated its value in the evaluation of DementiaNet as example of a complex health care innovation by incorporating interactions and contextual dependency. Limitations: The main limitation of the study was the limited follow-up. The DementiaNet approach demands considerable changes in behaviour and practice from large numbers of actors; such adaptations require time and will be different per network. Indeed, networks work different in speed of change and improvement goals. Nonetheless, these initial results show improvements even over one and two year timeframes. Suggestions for future research: A succeeding study will be initiated to ensure longer followup of existing networks, while simultaneously expanding the number of networks. [ABSTRACT FROM AUTHOR]

Introduction Crisis admissions of persons with dementia are more prevalent due to the rising number of people with dementia living longer at home. Moreover, societal dependency on informal care grows, which negatively impacts caregivers' wellbeing. This is often a direct reason for crisis admission of the person with dementia. Therefore, we developed REMIND, a digital tool for frequent monitoring of wellbeing and resilience of caregivers, which enables case managers to provide timely support, thereby preventing deterioration in caregiver wellbeing and eventually crisis admissions. The aim of this pilot study is to explore the usability and acceptability of REMIND. Theory/Methods During a 3-month period case manager-caregiver duo's used REMIND. The monitor was developed in co-creation with end-users during focus groups. The pilot version of REMIND consisted of a weekly set of questions on social support, reciprocity, burden, wellbeing, own activities and small crises, filled in via a chat on a smartphone or computer. Caregiver wellbeing was displayed in graphs on a dashboard for case managers to act upon. Usability and acceptability of the tool were explored in semi-structured interviews with the caregivers and case managers. Two independent researchers applied content analysis on the transcripts. Results Eight case managers and fourteen caregivers participating considered the tool easy to use. Caregivers appreciated REMIND, because it stimulated self-reflection regarding the burden of their caregiving processes. Case managers valued the tool's ability to gain better insight in the actual wellbeing of caregivers, because some caregivers find it hard to acknowledge themselves being burdened during a face-to-face conversation. The fact that REMIND provided insight in wellbeing patterns over time instead of a single assessment during a monthly home visit, was highly appreciated by case managers. The monitor outcomes were therefore considered a suitable starting point for conversations with caregivers. Suggestions for improvements included, more diverse set of questions and additional functions including peers support. Discussions In this pilot, REMIND was found highly usable and acceptable for both caregivers and casemanagers. The use a co-design approach in the development likely contributed to these findings. Conclusions Pilot evaluation of digital monitor for caregivers and case managers showed that the tool was easy to use and stimulated self-reflection in caregivers. For case managers it provided a starting point for conversations. The tool is able to monitor wellbeing of caregivers and thereby has the potential to prevent crisis. Lessons learned Developing a monitoring tool for caregivers of persons with dementia in a co-creation design process with end-users led to a well-accepted and easy-to-use device. Limitations Casemanagers in this pilot study were early adopters. Further research should include a more diverse group of case managers. Suggestions for future research A future randomized controlled study with longer follow-up may determine whether its use prevents (small) crises. [ABSTRACT FROM AUTHOR]

Introduction: Rearrangements are needed in primary care because of aging populations, the increased prevalence of dementia and increasing costs of health care. With DementiaNet, we aim to enhance primary care via integrated network-based care. We focus on structural collaboration from healthcare professionals from medical, care and social domains, and increased dementia expertise. Here, we describe our evaluation study on the DementiaNet innovation to provide insight in the merits and drawbacks of the DementiaNet innovation. Methods: The evaluation study is a longitudinal, mixed methods, multiple case study. The study population consists of two levels: (i) local DementiaNet networks of primary care professionals, and (ii) dyads of dementia patients and their informal caregivers who receive care from DementiaNet networks. At the start of participation and after 12 and 24 months, quantitative data is collected in each network on the maturity of the network, quality of care indicators, and outcomes reported by informal caregivers. Additionally, qualitative data is collected via in-depth interviews with professionals in the networks and dyads of patients and informal caregivers which provide insight in experiences and opinions regarding effects of the DementiaNet approach and the mechanism through which changes in quantitative outcomes are effectuated. Results: This study is currently ongoing with 17 networks included. Preliminary results of the first five networks show stable or improved quality of care and mostly positive experience with the DementiaNet approach. Analysis of quantitative data at 12 months (n=12) and at 24 months (n=5) will show time trends of these networks regarding their quality of care scores and association with informal caregiver-reported outcomes. Additionally, qualitative results from the interviews will be available. Discussion: This study will show whether the DementiaNet innovation leads to improved quality of dementia care and if this is associated with informal caregiver-reported outcomes, through an innovative study design that is designed to capture the complexity. Furthermore, it will provide insight in how this approach is perceived by primary care professionals. This evaluation study adds to the evidence-base of integrated health care, taken from a complex systems perspective. Conclusion: To conclude, this evaluation study will provide insight in the merits and drawbacks, facilitators and barriers, and improvement opportunities of the DementiaNet approach for integrated dementia care. [ABSTRACT FROM AUTHOR]