Search

Objectives: For older people who worry about their memory, their general practitioner (GP) is often the first healthcare professional they turn to. This study aims to increase knowledge of GPs' daily practice on diagnostic strategies for patients who present themselves with memory complaints and/or worries about dementia for the first time in general practice and to explore associations of patients' characteristics with these strategies. Method: Retrospective observational study using electronic patient records from patients presenting with memory complaints between 2012 and 2019. The patient records are derived from a Dutch primary care registration network. The decision on diagnostic strategy was extracted and categorized as (1) wait and see, (2) diagnostic testing in primary care, or (3) referral. Patient characteristics (gender, age, general practice, level of comorbidities, chronic polypharmacy, and the number of consultations on memory complaints), fear of developing dementia, and information on why the first consultation on memory complaints was scheduled were extracted. Results: A total of 228 patients were included. Most patients were cared for within primary care, either for further primary care diagnostics (56.1%) or because a wait‐and‐see strategy was pursued (14.9%). One‐third (28.9%) of patients were referred. Differences between diagnostic strategies in patient characteristics, fear of developing dementia, or reason for first consultation between these diagnostic strategies were not found, nor were these variables predictive of referral. Conclusion: Most Dutch patients with memory complaints and/or worries about dementia who seek help from their GP for the first time are cared for in the primary care setting for the following 6 months. The lack of association between included patient characteristics and diagnostic strategies highlights the complexity of the decision‐making process on diagnostic testing for dementia in general practice. Key points: Most Dutch patients who seek help for memory complaints from their general practitioner (GP) for the first time are not referred for specialized diagnostic testing, which underlines the crucial and gatekeeper role GPs play in the management and care for this patient group.Previous qualitative research indicates that GPs consider patient characteristics important in decisions on diagnostic trajectories for memory complaints. Retrospective data from the studied electronic patient records, however, indicates that patient characteristics such as age and comorbidity do not differ between diagnostic strategies nor are they predictive for referrals.Further unraveling of the complex decision‐making process for diagnostic testing for dementia is needed to facilitate timely dementia diagnoses. [ABSTRACT FROM AUTHOR]

OBJECTIVES: To construct a set of quality indicators (QIs) for dementia diagnosis and management in a primary care setting. DESIGN: RAND modified Delphi method, including a postal survey, a stakeholders consensus meeting, a scientific expert consensus meeting, and a demonstration project. SETTING: Primary care. PARTICIPANTS: General practitioners (GPs), primary care nurses (PCNs), and informal caregivers (ICs) in postal survey and stakeholders consensus meeting. Eight national dementia experts in scientific consensus meeting. Thirteen GPs in the demonstration project. MEASUREMENTS: Mean face validity and feasibility scores. Compliance rates using GPs' electronic medical record data. RESULTS: The initial set consisted of 31 QIs. Most indicators showed moderate or good face validity and feasibility scores. Consensus panels reduced the preliminary set used in the demonstration project to 24 QIs. The overall compliance to the QIs was 45.3%. Discriminative validity of the set was good; significant differences in adherence were found between GPs with high and low levels of patients aged 65 and older in their practice, with and without PCNs, and with positive and negative attitudes toward dementia (all P<.05). Based on the demonstration project, one QI was excluded. The final set consisted of 23 QIs; 15 QIs contained innovative quality criteria on collaboration between GPs and PCNs, referral criteria, and assessment of caregivers' needs. CONCLUSION: This new set of dementia QIs is feasible, reliable, and valid and can be used to improve primary dementia care. Because of the innovative quality criteria, the set is complementary to the existing dementia QIs. [ABSTRACT FROM AUTHOR]

Background This study aims to provide greater insight into the current decision-making process on diagnostic testing for dementia by exploring the expectations, needs and experiences of patients with memory complaints, significant others and general practitioners (GPs). Methods We performed semi-structured interviews with patients (>60 years) who consulted their GP on memory complaints, significant others and GPs. Participants were recruited until data saturation was reached in thematic analysis of interview transcripts. Results We performed 51 interviews (patients n  = 20, significant others n  = 15, GPs n  = 16). Thematic analysis revealed four themes: (i) 'drivers to (not) testing', i.e. need to act on symptoms, beliefs on the necessity and expected outcomes of diagnostic testing; (ii) 'patient preferences and context are critical in the actual decision', i.e. in the actual decision-making process interpretation of symptoms, GPs' desire to meet patient preferences, social context and healthcare system dynamics guided the decision; (iii) 'need for individualised communication in the decision-making process', i.e. for patients feeling heard was a prerequisite for decision-making and GPs tailored communication strategies to individual patients and (iv) 'GP practice and barriers to shared decision-making (SDM)', i.e. although GPs value SDM in the decision on diagnostic testing for dementia, patients express limited awareness of the decision and options at stake. Conclusions Decision-making on diagnostic testing for dementia is a multifactorial and preference-guided process for all involved stakeholders, but decisions are often not explicitly jointly made. Development of patient decision aids could facilitate better involvement and more informed choices by patients. [ABSTRACT FROM AUTHOR]

Background: Persons with dementia are at risk of developing nutritional problems. Theoretical models on nutritional problems have been developed, but have not been evaluated with healthcare professionals. Objective: This study aimed to explore the comprehensiveness and applicability of a theoretical model of nutritional problems in persons with dementia for daily nursing home practice. Methods: A qualitative design employing a combined deductive and inductive approach was used. Healthcare professionals were eligible to participate if they 1) had expert knowledge of and experience with nutritional problems related to dementia, and 2) worked in a nursing home affiliated with an academic network covering the east and south of the Netherlands. Three focus group interviews with 20 healthcare professionals from seven professions were held. We conducted thematic analysis and we compared themes with existing theoretical models from the literature. Results: We identified six themes, four of which corresponded with the existing models (observing and analysing nutritional problems; consequences of nutritional problems; functioning of the person with dementia; environmental factors). Interprofessional collaboration and ethical factors were identified as new themes. The analyses indicated interactions within each theme, between themes, and a bidirectional connection between themes. Conclusions: This study demonstrated the relevance of interprofessional collaboration and ethical considerations in nutritional problems related to dementia. It uncovered complex bidirectional relations within and between factors regarding nutritional problems. All aspects should be taken into account to minimize the consequences of nutritional problems for persons with dementia. [ABSTRACT FROM AUTHOR]

The concept of resilience, i.e., the capacity of a system to bounce back after a stressor, is gaining interest across many fields of science, policy, and practice. To date, resilience research in people with cognitive decline has predominantly addressed the early stages of decline. We propose that: (1) resilience is a relevant concept in all stages of cognitive decline; and (2) a socio-ecological, multisystem perspective on resilience is required to advance understanding of, and care and support for people with cognitive decline and their support networks. We substantiate our position with literature and examples. Resilience helps understand differences in response to risk factors of (further) cognitive decline and informs personalised prevention. In a curative context, interventions to strengthen resilience aim to boost recovery from cognitive decline. In care for people with dementia, resilience-focused interventions can strengthen coping mechanisms to maintain functioning and well-being of the individual and their support network. A good example of improving resilience in the social and policy context is the introduction of age-friendly cities and dementia-friendly communities. Good care for people with cognitive decline requires a health and social care system that can adapt to changes in demand. Given the interdependency of resilience at micro-, meso- and macro-levels, an integrative socio-ecological perspective is required. Applying the concept of resilience in the field of cognitive decline opens new horizons for research to improve understanding, predicting, intervening on health and social care needs for the increasing population with cognitive decline. [ABSTRACT FROM AUTHOR]

To explore the preferences of people with memory complaints (PwMC) and their significant others regarding starting a diagnostic trajectory for dementia. A systematic literature search was conducted in PubMed, PsycINFO, CINAHL, Web of Science, and Embase. Selection of abstracts and papers was performed independently by two researchers. Methodological quality was assessed with the Mixed Method Appraisal Tool. Result sections of the selected papers were thematically synthesized. From 2497 citations, seven qualitative studies and two mixed methods studies published between 2010 and 2020 were included. Overall quality of the studies was high to moderate. A thematic synthesis showed that preferences for starting a diagnostic trajectory arose from the feeling of needing to do something about the symptoms, beliefs on the necessity and expected outcomes of starting a diagnostic trajectory. These views were influenced by normalization or validation of symptoms, the support or wishes of the social network, interactions with health care professionals, the health status of the PwMC, and societal factors such as stigma and socioeconomic status. A variety of considerations with regard to decision-making on starting a diagnostic trajectory for dementia were identified. This emphasizes the need to explore individual preferences to facilitate a timely dementia diagnosis. [ABSTRACT FROM AUTHOR]

Dementia is a clinical diagnosis without curative treatment. It is uncertain whether ancillary testing is beneficial for patients. This study investigates the association between use of diagnostic tests and time to poor outcome and health care costs. Nationwide register-based cohort study using health care reimbursement data in the Netherlands. All Dutch hospitals, including 13,312 patients diagnosed with dementia in 2018. Diagnostic testing included computed tomography or magnetic resonance imaging (CT/MRI), neuropsychological examination (NPE), nuclear imaging (PET/SPECT), electroencephalography (EEG), and cerebrospinal fluid (CSF) testing. We compared time to poor outcome (institutionalization or death) and costs per month from 2018 to 2021 between those who underwent a specific diagnostic test in previous years to controls, propensity score matched for age, sex, type of hospital, and comorbidity. Time to poor outcome in those who underwent CT/MRI, EEG, or CSF testing was similar to those who did not, but was longer for those who underwent NPE. Time to poor outcome was shorter in patients who underwent PET/SPECT. Patients who underwent CSF testing or PET/SPECT had higher mean total health care costs as compared to controls (CSF €248, 95% CI 64-433; PET/SPECT: €315, 95% CI 179-451). NPE during the diagnostic trajectory was associated with lower total health care cost (–€127, 95% CI –62, –193). NPE was associated with longer time to poor outcome and lower health care costs, potentially due to confounding by indication. Patients who underwent neuroimaging (CT, MRI, SPECT/PET), CSF testing, or EEG for dementia diagnostics did not experience a longer time to poor outcome or lower health care costs. This emphasizes the importance of clinical examination as anchor for the diagnosis of dementia. [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]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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]

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. [ABSTRACT FROM AUTHOR]

Advance care planning (ACP) is seldom initiated with people with dementia (PWD) and mainly focuses on medical end-of-life decisions. We studied the effects of an educational intervention for general practitioners (GPs) aimed at initiating and optimizing ACP, with a focus on discussing medical and nonmedical preferences of future care. A single-blinded cluster randomized controlled trial. In 2016, 38 Dutch GPs (all from different practices) completed the study. They recruited 140 PWD, aged ≥65 years at any stage and with any type of dementia, from their practice. Intervention group GPs were trained in ACP, including shared decision-making and role-playing exercises. Control group GPs provided usual care. The primary outcome was ACP initiation: the proportion of PWD that had at least 1 ACP conversation documented in their medical file. Key secondary outcomes were the number of medical (ie, resuscitation, hospital admission) and nonmedical (ie, activities, social contacts) preferences discussed. At the 6-month follow-up, subjects' medical records were analyzed using random effect logistics and linear models with correction for GP clustering. 38 GP clusters (19 intervention; 19 control) included 140 PWD (intervention 73; control 67). Four PWD (2.9%) dropped out on the primary and key secondary outcomes. After 6 months, intervention group GPs initiated ACP with 35 PWD (49.3%), and control group GPs initiated ACP with 9 PWD (13.9%) [odds ratio (OR) 1.99; P =.002]. Intervention group GPs discussed 0.8 more medical [95% confidence interval (CI) 0.3, 1.3; P =.003] and 1.5 more nonmedical (95% CI 0.8, 2.3; P <.001) preferences per person with dementia than control group GPs. Our educational intervention increased ACP initiation, and the number of nonmedical and medical preferences discussed. This intervention has the potential to better align future care of PWD with their preferences but because of the short follow-up, the GPs' long-term adoption remains unknown. [ABSTRACT FROM AUTHOR]