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Objectives: Previous research in the general population shows more potentially inappropriate medications (PIMs) among persons with a migration background compared with persons without a migration background. This study investigated the association between non-Western (nw) migration background (MB) and dementia-specific PIMs in older adults with dementia in the Netherlands., Design: Cohort study using routinely recorded electronic health records and administrative data., Setting and Participants: Electronic health record data of general practitioners from the NIVEL-Primary Care Database, were linked to registries managed by Statistics Netherlands (2013-2014). A total of 9055 community-dwelling older adults with dementia were included, among whom 294 persons had an nw-MB from Africa, South America, or Asia, based on their country of birth., Methods: We determined the presence of dementia-specific PIM prescriptions and compared this between persons with an nw-MB and without an MB, using logistic regression analysis adjusted for follow-up time, age, registered sex, and total number of prescriptions. Interaction effects of potentially relevant covariates were tested. The 3 largest nw-MB groups in the Netherlands were analyzed separately., Results: Dementia-specific PIMs were less frequently prescribed to persons with an nw-MB compared to persons without an MB with a dementia diagnosis [30.6% vs 34.4%, odds ratio (OR) 0.71, 95% CI 0.54-0.92], with especially less often a benzodiazepine prescription in the group with an nw-MB, compared to persons without an MB (15.0% vs 19.3%, OR 0.61, 95% CI 0.43-0.84). Dementia duration, living alone, household income, and degree of urbanization did not influence the associations., Conclusions and Implications: Among older adults with dementia in the Netherlands, persons with an nw-MB had less often a dementia-specific PIM prescription compared to persons without an MB. Whether this difference is a reflection of better quality of care, higher professional uncertainty, or less recognition of (mental) health problems in persons with an nw-MB and dementia, needs further investigation., Competing Interests: Disclosures The authors declare no conflicts of interest., (Copyright © 2024 The Author(s). Published by Elsevier Inc. All rights reserved.)

Objectives: To provide insight into the health and social care costs during the disease trajectory in persons with dementia and the impact of institutionalization and death on healthcare costs compared with matched persons without dementia., Methods: Electronic health record data from family physicians were linked with national administrative databases to estimate costs of primary care, medication, secondary care, mental care, home care and institutional care for people with dementia and matched persons from the year before the recorded dementia diagnosis until death or a maximum of 4 years after the diagnosis., Results: Total mean health and social care costs among persons with dementia increased substantially during the disease trajectory, mainly due to institutional care costs. For people who remained living in the community, mean health and social care costs are higher for people with dementia than for those without dementia, while for those who are admitted to a long-term care facility, mean health and social care costs are higher for people without dementia than for those with dementia., Conclusions: The steep rise in health and social care costs across the dementia care trajectory is mainly due to increasing costs for institutional care. For those remaining in the community, home care costs and hospital care costs were the main cost drivers. Future research should adopt a societal perspective to investigate the influence of including social costs., (© 2024 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.)

Objective: This study examined the dyadic association of self and informal caregiver proxy-reported met needs in persons living with dementia on the health-related quality of life (HRQOL)., Methods: A total of 237 persons with dementia and their caregivers were included from a previous observational study. HRQOL was assessed by the EuroQol-5D and the number of met needs by the Camberwell Assessment of Needs for the Elderly. The Actor-Partner Interdependence Model framework was used to analyze the effect of an individual's self or proxy-reported met needs on their own HRQOL (actor effects), and an individual's self or proxy-reported met needs on the other dyad member's HRQOL (partner effects)., Results: The number of self-reported met needs by persons living with dementia was negatively associated with their own HRQOL (actor effect b = -0.200, p  < 0.001), and the HRQOL of informal caregivers (partner effect b = -0.114, p  = 0.001). The number of proxy-reported met needs by informal caregivers was negatively associated with their own HRQOL (actor effect b = -0.105, p  < 0.001) but not the person living with dementia's HRQOL (-0.025, p  = 0.375)., Conclusion: Study findings suggest that both self-reported and informal caregiver proxy-reported met needs in persons living with dementia should be considered in research and practice because they have different implications for each dyad members' HRQOL.

Background: Advance care planning (ACP) is a process of communication in which patients and family caregivers discuss preferences for future care with the healthcare team. For persons with dementia, it is crucial to timely engage in ACP. Therefore, we study ACP in dementia using electronic health record data. This study aims to determine how often ACP conversations are recorded, analyze time from dementia diagnosis until the first recorded conversation and time from the first recorded conversation to death, and analyze which factors are associated with the timing of ACP., Methods: Electronic records of 15,493 persons with dementia in Dutch general practice between 2008 and 2016 were linked to national administrative databases. ACP conversations and indicators of health deficits to determine frailty were obtained from electronic records coded with the International Classification of Primary Care. Socio-demographic characteristics were derived from the national population registry managed by Statistics Netherlands. Date of death was derived from the Personal Records Database (2008-2018)., Results: ACP was recorded as such as 22 (95% CI, 20-23) first conversations per 1,000 person-years of follow-up. The hazard ratio (HR) for the first conversation increased every year after dementia diagnosis, from 0.01 in the first year to 0.07 in the 7th and 8th year after diagnosis. Median time from a first conversation to death was 2.57 years (95% CI, 2.31-2.82). Migrant status [non-Western vs. Western (HR 0.31, 95% CI, 0.15-0.65)] was significantly associated with a longer time from dementia diagnosis to the first conversation. Being pre-frail (HR 2.06, 95% CI, 1.58-2.69) or frail (HR 1.40, 95% CI, 1.13-1.73) vs. non-frail was significantly associated with a shorter time from dementia diagnosis to the first ACP conversation., Conclusion: ACP conversations in Dutch general practice were rare for persons with dementia, or was rarely recorded as such. In particular among persons with a non-Western migration background and those who are non-frail, it started long after diagnosis. We advise further research into public health and practical strategies to engage persons with dementia with a non-Western migration background and non-frail persons early in the disease trajectory in ACP., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. The reviewer FP is currently organizing a Research Topic with one author HH., (Copyright © 2022 Azizi, Tilburgs, van Hout, van der Heide, Verheij, Achterberg, van der Steen and Joling.)

Introduction: This study aims to provide insight into the prevalence of health problems and the frequency of general practitioner (GP) contacts in cohabiting partners of persons with dementia, during the year prior to the dementia diagnosis and up to 3 years after the diagnosis., Methods: Partners of persons with dementia and a matched control group of partners of persons without dementia were identified in the routinely recorded electronic health records of 451 Dutch general practices in 2008-2015. These data were used to examine the prevalence of the partners' health problems. Differences between these partners and comparison partners in the prevalence of 16 groups of health problems (diagnostic chapters) and in the frequency of GP contacts were examined using generalized estimating equation models., Results: 1,711 partners of persons with dementia and 6,201 comparison partners were included in the analyses. Social problems, more specifically problems related to the illness and/or the loss of the partner, were significantly more prevalent in partners than in comparison partners across the years (p < 0.01), as were musculoskeletal problems (p < 0.01). Respiratory and psychological problems increased over time in partners and remained stable in comparison partners. Across the years, partners contacted their GP more often than comparison partners (p < 0.01)., Discussion/conclusion: Having a cohabiting partner with dementia has consequences for caregiver's physical and psychosocial health. The specific health problems found in this study and the increase in GP contacts might be relevant indicators of overburdening in partners of persons with dementia., (© 2021 S. Karger AG, Basel.)

Objectives: To evaluate whether the prevalence of health problems in cohabiting partners of people with dementia differs between the year before and the year after 3 transitions: the diagnosis of dementia, institutionalization, and the death of the person with dementia., Methods: Individuals with dementia and their partners were identified on the basis of data in the electronic health records (EHRs) of 451 Dutch general practices. EHRs were also the data source on their health problems, which were linked to the Dutch population registry and health administration data with demographic characteristics, date of institutionalization, and date of death. Differences in the prevalence of 16 groups of health problems and of specific health problems in partners during the year before and the year after the 3 transitions were examined using a generalized estimating equation., Results: About 1,110 partners of persons with dementia were identified. Problems related to the illness and/or loss of the person with dementia were significantly more prevalent in the year after the dementia diagnosis (32% vs. 17%) and in the year after the death of the person with dementia (59% vs. 41%) than in the years before. Unspecified health problems were more prevalent in the year after the diagnosis than in the year before (30% vs. 22%). After institutionalization, an increase was found in digestive problems and urological problems (30% vs. 18% and 24% vs. 17%)., Discussion: Transitions during the dementia care trajectory, namely, the diagnosis, institutionalization, and death of the person with dementia, significantly affect the cohabiting partner's health., (© The Author(s) 2020. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background: Psychotropic drugs are frequently prescribed to people with dementia in nursing homes although severe adverse events and side effects are common. Less is known about the prevalence and types of psychotropic drug prescription in primary care for people with dementia., Objective: This study examined the prevalence of psychotropic drug prescriptions in primary care among persons with dementia from the year of diagnosis onwards., Methods: A longitudinal observational study using electronic health record (EHR) data was conducted. People with dementia were selected from EHR data of 451 general practices in the Netherlands. Age and gender-adjusted psychotropic drug prescription rates were calculated per 1000 person-years from the year the dementia diagnosis was first recorded in general practice up to 8 years after diagnosis., Results: Data of 15,687 patients were analyzed. The prescription rate of psychotropic drugs (not including antidementia drugs) was 420 per 1000 person-years (95% CI 409; 431) in the first year after the recorded dementia diagnosis, which increased to 801 per 1000 person-years (95% CI 649; 989) in the eighth year. The most frequently prescribed drugs were antidepressants, antipsychotics, and antidementia drugs, followed by anxiolytics, hypnotics, and antiepileptics., Conclusions: After a dementia diagnosis is recorded in general practice, the prevalence of psychotropic drug prescriptions is substantial and increases steadily during the disease trajectory of persons with dementia. Although the (in)appropriateness of prescribing was not assessed, these insights may stimulate primary care clinicians to (re)consider their prescription policy of psychotropics for people with dementia more carefully., (© 2020 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.)

Introduction: Reliable estimates of time from diagnosis until institutionalization and death in people with dementia from routine nationally representative databases are lacking., Methods: We selected 9230 people with dementia and 24,624 matched controls from family physicians' electronic records linked with national administrative databases to analyze time until institutionalization and death and associated factors., Results: Median time from recorded diagnosis until institutionalization and until death for people with dementia was 3.9 and 5.0 years, respectively, which was considerably shorter than for controls. Once institutionalized, median time to death was longer for persons with dementia (2.5 years) than for controls (1.2 years). Older age and receiving home care were the strongest predictors of shorter time until institutionalization and death in people with dementia. Gender, cohabitation, migration status, frailty, polypharmacy, and dementia medication were other significant factors., Discussion: The estimates could help to inform patients, their families, and policymakers about probable trajectories., (© 2019 The Authors. Alzheimer's & Dementia published by Wiley Periodicals, Inc. on behalf of Alzheimer's Association.)

Objective: Family caregivers of people with dementia often report high levels of stress and depression, but little is known about those who contemplate suicide or self-harm. This study explores thoughts of suicide, self-harm and death in dementia caregivers and investigates the characteristics that distinguish them from those without such thoughts., Methods: Data were collected every 3 months, for 24 months, from 192 family caregivers of people with dementia living in the Netherlands. Caregivers did not have a clinical depression or anxiety disorder at baseline. Suicide-related thoughts were measured with an item from the Mini International Neuropsychiatric Interview, a diagnostic instrument for DSM-IV mental disorders. Fisher exact, analysis of variance or Kruskal-Wallis tests compared the characteristics of caregivers who had contemplated suicide with two comparison groups., Results: Within 24 months, 76 caregivers reported symptoms of a potential depression and were further assessed for suicidal thoughts. Nine carers (11.8%, 4.7% of the total sample) reported suicidal thoughts with three of those at multiple points. Caregivers with suicidal thoughts had more severe depressive and anxious symptoms, had a lower sense of competence and mastery, felt less happy and experienced more health problems, less family support and more feelings of loneliness than caregivers who had not., Conclusion: Suicidal thoughts are present in dementia caregivers and can persist across the care trajectory. Various psychological and social characteristics significantly distinguish caregivers with suicidal thoughts from those without. More research is needed to enable the identification of high-risk caregivers and provide an evidence base for the development of preventive strategies and interventions. © 2017 The Authors. International Journal of Geriatric Psychiatry Published by John Wiley & Sons Ltd., (© 2017 The Authors. International Journal of Geriatric Psychiatry Published by John Wiley & Sons Ltd.)

Background: Many older people worry about cognitive decline. Early cognitive screening in an anonymous and easily accessible manner may reassure older people who are unnecessarily worried about normal cognitive aging while it may also expedite help seeking in case of suspicious cognitive decline., Objective: To develop and validate online and telephone-based automated self-tests of cognitive function., Methods: We examined the feasibility and validity of the self-tests in a prospective study of 117 participants of whom 34 had subjective cognitive decline (SCD), 30 had mild cognitive impairment (MCI), and 53 had dementia. The ability of these self-tests to accurately distinguish MCI and dementia from SCD was examined with ROC curves. Convergent validity was examined by calculating rank correlations between the self-tests and neuropsychological tests., Results: Both the online and telephone cognitive self-tests were feasible, because the majority of participants (86% and 80%, respectively) were able to complete them. The online self-test had adequate diagnostic accuracy in the screening for MCI and dementia versus SCD with an Area under the Curve (AUC) of 0.86 (95% CI: 0.78-0.93). The AUC of the MMSE was 0.82 (95% CI: 0.74-0.89). By contrast, the telephone self-test had lower diagnostic accuracy (AUC = 0.75, 95% CI: 0.64-0.86). Both self-tests had good convergent validity as demonstrated by moderate to strong rank correlations with neuropsychological tests., Conclusion: We demonstrated good diagnostic accuracy and convergent validity for the online self-test of cognitive function. It is therefore a promising tool in the screening for MCI and dementia.

Background: Different forms of case management for dementia have emerged over the past few years. In the COMPAS study (Collaborative dementia care for patients and caregivers study), two prominent Dutch case management forms were studied: the linkage and the integrated care form., Aim of Study: Evaluation of the (cost)effectiveness of two dementia case management forms compared to usual care as well as factors that facilitated or impeded their implementation., Methods: A mixed methods design with a) a prospective, observational controlled cohort study with 2 years follow-up among 521 dyads of people with dementia and their primary informal caregiver with and without case management; b) interviews with 22 stakeholders on facilitating and impeding factors of the implementation and continuity of the two case management models. Outcome measures were severity and frequency of behavioural problems (NPI) for the person with dementia and mental health complaints (GHQ-12) for the informal caregiver, total met and unmet care needs (CANE) and quality adjusted life years (QALYs)., Results: Outcomes showed a better quality of life of informal caregivers in the integrated model compared to the linkage model. Caregivers in the control group reported more care needs than those in both case management groups. The independence of the case management provider in the integrated model facilitated the implementation, while the rivalry between multiple providers in the linkage model impeded the implementation. The costs of care were lower in the linkage model (minus 22 %) and integrated care model (minus 33 %) compared to the control group., Conclusion: The integrated care form was (very) cost-effective in comparison with the linkage form or no case management. The integrated care form is easy to implement.

Purpose: Despite a call for earlier diagnosis of dementia, the diagnostic yield of case finding and its impact on the mental health of patients and relatives are unclear. This study assessed the effect of a two-component intervention of case finding and subsequent care on these outcomes., Methods: In a cluster RCT we assessed whether education of family physicians (FPs; trial stage 1) resulted in more mild cognitive impairment (MCI) and dementia diagnoses among older persons in whom FPs suspected cognitive decline and whether case finding by a practice nurse and the FP (trial stage 2) added to this number of diagnoses. In addition, we assessed mental health effects of case finding and subsequent care (trial stage 2). FPs of 15 primary care practices (PCPs = clusters) judged the cognitive status of all persons ≥ 65 years. The primary outcome, new MCI and dementia diagnoses by FPs after 12 months as indicated on a list, was assessed among all persons in whom FPs suspected cognitive impairment but without a formal diagnosis of dementia. The secondary outcome, mental health of patients and their relatives, was assessed among persons consenting to participate in trial stage 2. Trial stage 1 consisted of either intervention component 1: training FPs to diagnose MCI and dementia, or control: no training. Trial stage 2 consisted of either intervention component 2: case finding of MCI and dementia and care by a trained nurse and the FP, or control: care as usual., Results: Seven PCPs were randomized to the intervention; eight to the control condition. MCI or dementia was diagnosed in 42.3% (138/326) of persons in the intervention, and in 30.5% (98/321) in the control group (estimated difference GEE: 10.8%, OR: 1.51, 95%-CI 0.60-3.76). Among patients and relatives who consented to stage 2 of the trial (n = 145; 25%), there were no differences in mental health between the intervention and control group., Conclusions: We found a non-significant increase in the number of new MCI diagnoses. As we cannot exclude a clinically relevant effect, a larger study is warranted to replicate ours., Trial Registration: Nederlands Trial Register NTR3389.

Background/aims: Although caring for a person with dementia can be stressful, some caregivers appear to experience few negative consequences to their well-being. This study aimed to examine what proportion of caregivers demonstrates resilience under different challenging circumstances and to identify factors related to their resilience., Methods: Baseline data from 4 studies from the Netherlands and UK among informal caregivers of people with dementia were harmonized and integrated. Caregiver resilience was defined as high levels of psychological well-being despite different types of high caregiving demands. Multivariate regression analyses identified factors significantly related to caregiver resilience., Results: The integrated data set included 15 harmonized variables with data from 1,048 caregivers facing a high care demand. The prevalence of resilience varied between 35 and 43%, depending on the demand for high care. Being a male caregiver, caring for a female, living apart from your relative, and low caregiver burden were positively related to caregiver resilience., Conclusion: Caregivers have the capacity to demonstrate resilience despite significant challenges. This study demonstrates how harmonization of data from multiple existing studies can be used to increase power and explore the consistency of findings. This contributes to a better understanding of which factors are likely to facilitate caregiver resilience and offers insights for developing services., (© 2016 The Author(s) Published by S. Karger AG, Basel.)

Objectives: Dementia poses a substantial economic burden on society. Knowing which factors predict high costs in dementia may help to better target interventions and optimize resource allocation. This study aimed to identify predictors of the total societal costs in dementia patients and their informal caregivers., Design: Prospective cohort study with 2-year follow up., Setting and Participants: 192 community-dwelling patients with dementia and their primary informal caregivers in the Netherlands., Measurements: Data on health care resource utilization, informal carer time and caregivers' work absenteeism were collected by cost diaries and interviews. Predictors of total costs were identified for patient-caregiver dyads, and for patients and informal caregivers separately by performing univariate and multivariate generalized linear models., Results: Societal costs of patient-caregiver dyads averaged €75,084 (SEM: €4,263) in the first year and €99,369 (SEM: €6,441) in the second year. Sixty percent was attributed to costs of informal care. Patient impairments in activities of daily living (ADLs) and instrumental activities of daily living (IADLs), disruptions during daily activities of the caregiver, and receiving case management were significantly associated with higher costs in dyads. The same predictors remained significant for patients' costs separately, and for informal caregivers, a poorer caregiver's quality of life and having more chronic diseases determined higher costs., Conclusions: The societal costs of dementia are substantial and mainly due to high costs of informal care. The burden for caregivers caused by a disrupted schedule and patients' ADL and IADL dependencies contributed most to the total costs. Interventions targeting these factors effectively might result in relevant economic benefits for society., (Copyright © 2015 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.)

Objective: To evaluate outcomes for persons with dementia and primary informal caregivers of 2 types of implemented case management (intensive case management [ICMM] and linkage [LM] models) with no case management (control group)., Design: A pragmatic trial using a prospective, observational, controlled, cohort study., Setting: Community care in the Netherlands., Participants: A total of 521 dyads., Intervention: Case management provided within one care organization (ICMM), case management where multiple case management organizations are present within one region (LM), and a group with no access to case management (control)., Measurements: Neuropsychiatric problems in persons with dementia assessed by the Neuropsychiatric Inventory (NPI) and psychological health in informal caregivers as measured with the General Health Questionnaire (GHQ-12). Secondary outcomes included care and support needs, quality of life, and institutionalization. Comparability of groups at baseline was secured by inverse-propensity-score-weighted mixed models., Results: No significant differences in changes in total NPI or GHQ-12 scores between the groups over 2 years were found. Secondary outcomes showed better quality-of-life scores for informal caregivers in the ICMM than the LM. Total needs, met and unmet care needs were significantly less in the ICMM compared with the control group., Conclusion: Neither case management type affected clinical outcomes of dyads meaningfully. The ICMM has positive impact on caregivers' quality of life and patient's number of needs compared with persons in LM and persons without access to case management respectively., (Copyright © 2015 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Dementia is often not formally diagnosed in primary care. To what extent this is due to family physicians' (FPs) watchful waiting, reluctance to diagnose or to their unawareness of the presence of cognitive impairment is unclear. The objective of this study was to assess FPs' awareness of cognitive impairment by comparing their evaluation of the absence or presence of cognitive impairment in older patients without an established diagnosis of dementia, with a reference test of cognitive functioning. In addition, we assessed which patient characteristics were associated with con- and discordance between FPs' evaluation of cognition and results of the reference test., Methods: The design was a nested diagnostic study. FPs (n = 29) of 15 primary care practices classified the cognitive status of all their patients ≥ 65 years of age (n = 7865) into four categories, based on recollection and medical records. All patients categorized as 'possible cognitive impairment or dementia' and a sample of patients categorized as 'no signs of cognitive impairment' randomly selected to match age and gender were offered to receive a reference test of cognitive function (the CAMCOG) to verify the FPs' label. This reference test could yield three outcomes: no cognitive impairment, amnestic mild cognitive impairment (aMCI) or dementia. Reference test results were weighted back to the original samples to provide estimates for the correct categorization of elderly as 'possible cognitive impairment or dementia' (positive predictive value [PPV]) and 'no signs of cognitive impairment' (negative predictive value [NPV]). Cognitive functioning was not assessed for patients evaluated by FPs as 'probable dementia' and 'unknown or no recent contact'. Characteristics associated with the con- or discordance of the FPs' classification and the reference test were assessed using logistic regression., Results: Complete reference test results were obtained from 318 elderly. FPs labeled 8.3 % of elderly 'possible cognitive impairment or dementia'. The PPV of this label for a CAMCOG score suggestive of dementia or aMCI was 47.1 % (95 %-confidence interval: 43.5 - 62.4 %). FPs labeled 83.7 % 'no signs of cognitive impairment'. The 1-NPV of this label for a CAMCOG score suggestive of dementia or aMCI was 12.5 % (95 %-CI 8.2 - 16.8 %). FPs labeled 3.6 % as 'probable dementia' and 4.5 % as 'unknown or no recent contact'. The odds that FPs' suspicion of cognitive impairment were confirmed by the CAMCOG were higher if persons were ADL dependent (OR 2.24 [95 %-CI 1.16 - 4.35]). The odds of FPs being unaware of the presence of cognitive impairment were higher in the older elderly (OR 1.15 [95 %-CI 1.09 - 1.23] per year)., Conclusion: Evaluation of FPs' classification of the global cognitive function of elderly without a firm diagnosis of dementia showed both over- and unawareness of the presence of cognitive impairment. FPs were more often unaware of cognitive impairment in the older elderly.

Background: Few personalized e-interventions are available for informal and professional caregivers of people with dementia. The DEMentia Digital Interactive Social Chart (DEM-DISC) is an ICT tool to support customized disease management in dementia. The aim of this study was to improve and evaluate DEM-DISC, its user-friendliness and usefulness and to investigate the future implementation., Methods: A cluster randomized controlled trial (RCT) design was used with measurements at baseline, 6 and 12 months. A total of 73 informal caregivers of people with dementia, supported by 19 randomized case managers participated in the study. In the intervention group, both carers (n = 41) and case managers (n = 13) could access DEM-DISC during twelve months. The control group, 32 carers and 14 case managers, had no access to DEM-DISC. Semi-structured interviews were conducted with ten stakeholders., Results: Informal caregivers who used DEM-DISC for twelve months reported an increased sense of competence than controls. A subgroup of users who frequently accessed DEM-DISC reported more met needs after six months than controls. Overall informal caregivers and case managers judged DEM-DISC as easy to learn and user-friendly., Conclusions: This study demonstrates that using DEM-DISC had a positive effect on the sense of competence and experienced (met) needs of informal carers. This shows the importance of user-friendly ICT solutions to assist carers in finding appropriate care services tailored to their specific situation and needs. For further implementation of DEM-DISC methods to keep the information updated is of great importance.

Objective: Caregivers of persons with dementia play an important and economically valuable role within society, but many may do so at a considerable cost to themselves. Knowing which caregivers have the highest risk of developing a mental disorder may contribute to better support of ultra-high-risk groups with preventive interventions. This study aims to describe the incidence of depression and anxiety disorders in caregivers and to identify its significant predictors., Design: Prospective cohort study with a follow-up of 24 months., Participants: 181 spousal caregivers of persons with dementia without a clinical depression or anxiety disorder at baseline., Setting: Memory clinics, case management services, and primary care settings in the Netherlands., Measurements: The onset of depression and anxiety was measured every 3 months with the MINI International Neuropsychiatric Interview, a structured diagnostic instrument for DSM-IV mental disorders. Potential predictors were assessed at baseline., Results: 60% of the caregivers developed a depressive and/or anxiety disorder within 24 months: 37% a depression, 55% an anxiety disorder, and 32% both disorders. Sub-threshold depressive symptoms (Wald χ2=6.20, df=1, OR: 3.2, 95% CI: 1.28-8.03, p=0.013) and poor self-reported health of the caregiver (Wald χ2=5.56, df=1, OR: 1.17, 95% CI: 1.03-1.34, p=0.018) at baseline were significant predictors of disorder onset., Conclusion: Spousal caregivers of persons with dementia have a high risk to develop a mental disorder. Indicators related to the caregiver's (mental) health rather than environmental stressors such as patient characteristics or interruption of caregivers' daily activities predict disorder onset and can be used to identify caregivers for whom supporting preventive interventions are indicated., (Copyright © 2015 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.)

Background: The aim of this process evaluation was to provide insight into facilitators and barriers to the delivery of community-based personalized dementia care of two different case management models, i.e. the linkage model and the combined intensive case management/joint agency model. These two emerging dementia care models differ considerably in the way they are organized and implemented. Insight into facilitators and barriers in the implementation of different models is needed to create future guidelines for successful implementation of case management in other regions., Methods: A qualitative case study design was used; semi-structured interviews were conducted with 22 stakeholders on the execution and continuation phases of the implementation process. The stakeholders represented a broad range of perspectives (i.e. project leaders, case managers, health insurers, municipalities)., Results: The independence of the case management organization in the intensive model facilitated the implementation, whereas the presence of multiple competing case management providers in the linkage model impeded the implementation. Most impeding factors were found in the linkage model and were related to the organizational structure of the dementia care network and how partners collaborate with each other in this network., Conclusions: The results of this process evaluation show that the intensive case management model is easier to implement as case managers in this model tend to be more able to provide quality of care, are less impeded by competitiveness of other care organizations and are more closely connected to the expert team than case managers in the linkage model.

Background: Dementia imposes a heavy burden on health and social care systems as well as on family caregivers who provide a substantial portion of the care. Interventions that effectively support caregivers may prevent or delay patient institutionalization and hence be cost-effective. However, evidence about the cost-effectiveness of such interventions is scarce. The aim of this study was to evaluate the cost-effectiveness of a family meetings intervention for family caregivers of dementia patients in comparison with usual care over a period of 12 months., Methods: The economic evaluation was conducted from a societal perspective alongside a randomized trial of 192 primary caregivers with community-dwelling dementia patients. Outcome measures included the Quality Adjusted Life-Years (QALY) of caregivers and patients and the incidence of depression and anxiety disorders in caregivers. Missing cost and effect data were imputed using multiple imputations. Bootstrapping was used to estimate uncertainty around the cost-differences and the incremental cost-effectiveness ratio (ICER). The bootstrapped cost-effect pairs were plotted on a cost-effectiveness plane and used to estimate cost-effectiveness curves., Results: No significant differences in costs and effects between the groups were found. At 12 months, total costs per patient and primary caregiver dyad were substantial: €77,832 for the intervention group and €75,201 for the usual care group (adjusted mean difference per dyad €4,149, 95% CI -13,371 to 21,956, ICER 157,534). The main cost driver was informal care (66% of total costs), followed by patients' day treatment and costs of hospital and long-term care facility admissions (23%). Based on the cost-effectiveness acceptability curves, the maximum probability that the intervention was considered cost-effective in comparison with usual care reached 0.4 for the outcome QALY per patient-caregiver dyad and 0.6 for the caregivers' incidence of depression and/or anxiety disorders regardless of the willingness to pay., Conclusions: The annual costs of caring for a person with dementia were substantial with informal care being by far the largest contributor to the total societal costs. Based on this study, family meetings cannot be considered a cost-effective intervention strategy in comparison with usual care., Trial Registration: ISRCTN register, ISRCTN90163486.

Background: Little is known about met and unmet needs of individuals in residential care, many of whom suffer from dementia. Unmet needs are associated with a decreased quality of life, worse mental health, dissatisfaction with services, and increased costs of care. The aim of this study was to compare the number and type of (unmet) needs of people with and without dementia in residential care in the Netherlands., Methods: 187 individuals in residents care or their relatives were interviewed to identify their care needs on 24 topics using the Camberwell Assessment of Needs for the Elderly (CANE) interview., Results: Individuals diagnosed with probable dementia reported more needs in total and more unmet needs in comparison with individuals without this diagnosis. More specifically, differences were found for the topics "accommodation", "money", "benefits", "medication management", "incontinence", "memory problems", "inadvertent self-harm", "company" and "daytime activities"., Conclusions: It seems that the differences in care needs between individuals with and without dementia can be attributed to actual differences in physical and cognitive functioning. Residents with dementia reported more often unmet needs which might imply that care for people with dementia can still be better attuned to their needs.

Background: Crisis is a term frequently used in dementia care lacking a standardized definition. This article systematically reviews existing definitions of crisis in dementia care literature to create a standardized definition that can be utilized for research, policy and clinical practice., Methods: We systematically searched for articles containing definitions of crisis in the context of dementia care. We created an operational framework of crisis based on retrieved definitions. Recommendations to address crisis situations were reviewed and classified according to care settings., Results: Abstracts and titles of 1,113 articles, screened from PubMed and EMBASE, were narrowed down to 27 articles. After review, crisis in dementia was defined as a process where a stressor causes an imbalance requiring an immediate decision to be made which leads to a desired outcome and therefore a resolution of the crisis. If the crisis is not resolved, the cycle continues. Recommendations for resolving crisis involving persons with dementia and their caregivers include awareness therapy after diagnosis and increased contact with general practitioners, case manager consultations, caregiver support and education. Furthermore, nursing home staff should be attuned to the environmental, physical and psychological needs of persons with dementia., Conclusions: This is the first article to review the definition of crisis in the context of dementia care. A review of the literature indicated that the definition of a crisis is idiosyncratic. Therefore, it is difficult to prevent or plan for all crises. We used an operational framework to compile types of crisis stressors and recommendations from the crisis literature based on three different perspectives; the person with the dementia, the caregiver and the healthcare providers.

Background: In the primary care setting, dementia is often diagnosed relatively late in the disease process. Case finding and proactive collaborative care may have beneficial effects on both patient and informal caregiver by clarifying the cause of cognitive decline and changed behaviour and by enabling support, care planning and access to services.We aim to improve the recognition and diagnosis of individuals with dementia in general practice. In addition to this diagnostic aim, the effects of case finding and subsequent care on the mental health of individuals with dementia and the mental health of their informal carers are explored., Design: cluster randomised controlled trial with process evaluation., Participants: 162 individuals ≥ 65 years, in 15 primary care practices, in whom GPs suspect cognitive impairment, but without a dementia diagnosis.Intervention; case finding and collaborative care: 2 trained practice nurses (PNs) invite all patients with suspected cognitive impairment for a brief functional and cognitive screening. If the cognitive tests are supportive of cognitive impairment, individuals are referred to their GP for further evaluation. If dementia is diagnosed, a comprehensive geriatric assessment takes place to identify other relevant geriatric problems that need to be addressed. Furthermore, the team of GP and PN provide information and support., Control: GPs provide care and diagnosis as usual.Main study parameters: after 12 months both groups are compared on: 1) incident dementia (and MCI) diagnoses and 2) patient and caregiver quality of life (QoL-AD; EQ5D) and mental health (MH5; GHQ 12) and caregiver competence to care (SSCQ). The process evaluation concerns facilitating and impeding factors to the implementation of this intervention. These factors are assessed on the care provider level, the care recipient level and on the organisational level., Discussion: This study will provide insight into the diagnostic yield and the clinical effects of case finding and collaborative care for individuals with suspected cognitive impairment, compared to usual care. A process evaluation will give insight into the feasibility of this intervention.The first results are expected in the course of 2013., Trial Registration: NTR3389.

Background: Dementia care in the Netherlands is shifting from fragmented, ad hoc care to more coordinated and personalised care. Case management contributes to this shift. The linkage model and a combination of intensive case management and joint agency care models were selected based on their emerging prominence in the Netherlands. It is unclear if these different forms of case management are more effective than usual care in improving or preserving the functioning and well-being at the patient and caregiver level and at the societal cost. The objective of this article is to describe the design of a study comparing these two case management care models against usual care. Clinical and cost outcomes are investigated while care processes and the facilitators and barriers for implementation of these models are considered., Design: Mixed methods include a prospective, observational, controlled, cohort study among persons with dementia and their primary informal caregiver in regions of the Netherlands with and without case management including a qualitative process evaluation. Inclusion criteria for the cohort study are: community-dwelling individuals with a dementia diagnosis who are not terminally-ill or anticipate admission to a nursing home within 6 months and with an informal caregiver who speaks fluent Dutch. Person with dementia-informal caregiver dyads are followed for two years. The primary outcome measure is the Neuropsychiatric Inventory for the people with dementia and the General Health Questionnaire for their caregivers. Secondary outcomes include: quality of life and needs assessment in both persons with dementia and caregivers, activity of daily living, competence of care, and number of crises. Costs are measured from a societal perspective using cost diaries. Process indicators measure the quality of care from the participant's perspective. The qualitative study uses purposive sampling methods to ensure a wide variation of respondents. Semi-structured interviews with stakeholders based on the theoretical model of adaptive implementation are planned., Discussion: This study provides relevant insights into care processes, description of two case management models along with clinical and economic data from persons with dementia and caregivers to clarify important differences in two case management care models compared to usual care.

Objective: Optimising care for dementia patients and their informal carers is imperative in light of the impending dementia epidemic. An important aspect of care is accurate recognition and diagnosis of dementia. The aim of this review was to estimate family physicians' diagnostic accuracy at the different stages of dementia., Methods: Pubmed, Embase, CINAHL, PsycINFO and the Cochrane Library were searched for articles comparing family physicians' 'dementia' and 'cognitive impairment' diagnoses in the primary care setting to reference standard dementia diagnoses., Results: Data from six cross-sectional studies of moderate to reasonable methodological quality were extracted for the analysis. One study considered the accuracy of family physicians' recollected diagnoses, and three studies focussed on documented diagnoses. In these four studies, the sensitivity of family physicians' combined diagnostic categories of 'cognitive impairment' together with 'dementia' was 0.48-0.67 for mild dementia and 0.76-0.85 for moderate to severe dementia. The sensitivity of their diagnostic category 'dementia' alone was 0.14-0.33 for mild and 0.28-0.61 for moderate to severe dementia. Specificity was excellent for all severity stages in both comparisons. Three studies examined the accuracy of family physicians' judgement of cognition during consultation. Compared with the studies on recollection and documentation, these studies reported higher sensitivity and lower specificity., Conclusion: Many individuals with dementia are not recognised or not diagnosed as such; particularly mild dementia is under-diagnosed. Collaboration within primary care and education focussing both on knowledge and attitude are recommended to improve the accuracy of family physicians' dementia diagnosis., (Copyright © 2011 John Wiley & Sons, Ltd.)

Background: Depression in informal caregivers of persons with dementia is a major, costly and growing problem. However, it is not yet clear which caregivers are at increased risk of developing depression. With this knowledge preventive strategies could focus on these groups to maximize health gain and minimize effort., Methods: The onset of clinically relevant depression was measured with the Center for Epidemiologic Studies - Depression Scale in 725 caregivers who were not depressed at baseline and who were providing care for a relative with dementia. Caregivers were followed over 18 months. The indices calculated to identify the most important risk indicators were: odds ratio, attributable fraction, exposure rate and number needing to be treated., Results: The following significant indicators of depression onset were identified: increased initial depressive symptoms, poor self-rated health status and white or Hispanic race/ethnicity. The incidence of depression would decrease by 72.3% (attributive fraction) if these risk indicators together are targeted by a completely effective intervention. Race/ethnicity was not a significant predictor if caregivers of patients who died or were institutionalized were left out of the analyses., Conclusion: Detection of only a few characteristics makes it possible to identify high-risk groups in an efficient way. Focusing on these easy-to-assess characteristics might contribute to a cost-effective prevention of depression in caregivers.

Background: Family caregivers of dementia patients are at increased risk of developing depression or anxiety. A multi-component program designed to mobilize support of family networks demonstrated effectiveness in decreasing depressive symptoms in caregivers. However, the impact of an intervention consisting solely of family meetings on depression and anxiety has not yet been evaluated. This study examines the preventive effects of family meetings for primary caregivers of community-dwelling dementia patients., Methods: A randomized multicenter trial was conducted among 192 primary caregivers of community dwelling dementia patients. Caregivers did not meet the diagnostic criteria for depressive or anxiety disorder at baseline. Participants were randomized to the family meetings intervention (n = 96) or usual care (n = 96) condition. The intervention consisted of two individual sessions and four family meetings which occurred once every 2 to 3 months for a year. Outcome measures after 12 months were the incidence of a clinical depressive or anxiety disorder and change in depressive and anxiety symptoms (primary outcomes), caregiver burden and quality of life (secondary outcomes). Intention-to-treat as well as per protocol analyses were performed., Results: A substantial number of caregivers (72/192) developed a depressive or anxiety disorder within 12 months. The intervention was not superior to usual care either in reducing the risk of disorder onset (adjusted IRR 0.98; 95% CI 0.69 to 1.38) or in reducing depressive (randomization-by-time interaction coefficient = -1.40; 95% CI -3.91 to 1.10) or anxiety symptoms (randomization-by-time interaction coefficient = -0.55; 95% CI -1.59 to 0.49). The intervention did not reduce caregiver burden or their health related quality of life., Conclusion: This study did not demonstrate preventive effects of family meetings on the mental health of family caregivers. Further research should determine whether this intervention might be more beneficial if provided in a more concentrated dose, when applied for therapeutic purposes or targeted towards subgroups of caregivers., Trial Registration: Controlled-Trials.com ISRCTN90163486.

Background: Interventions relieving the burden of caregiving may postpone or prevent patient institutionalization. The objective of this study was to determine whether a family meetings intervention was superior to usual care in postponing nursing home placement of patients with dementia., Methods: A randomized multicenter trial was conducted among 192 patients with a clinical diagnosis of dementia living at home at enrolment and their primary family caregiver. Dyads of caregivers and patients were randomized to the family meetings intervention (n = 96) or usual care (n = 96) condition. The intervention consisted of two individual sessions with the primary caregiver and four family counseling sessions that included family members and friends. The primary outcome measure was the time until institutionalization of the patient. Intention-to-treat as well as per protocol analyses were performed. Survival analyses were carried out to evaluate the effectiveness of the intervention., Results: During 18 months follow-up 23 of 96 relatives with dementia of caregivers in the intervention group and 18 of 96 relatives with dementia of caregivers in the usual care group were institutionalized. No significant difference between the intervention and the usual care group was found in time until institutionalization (adjusted hazard ratio (HR) 1.46, 95% confidence interval (CI) 0.78 to 2.74). The per-protocol analysis revealed no significant effect either (adjusted HR 0.57, 95% CI 0.21 to 1.57), although the number of placements among the adherers was relatively low (9.4%). A subgroup effect was found for patients' age, with a significantly higher risk of institutionalization for 'younger' patients in the intervention group compared with the usual care group (adjusted HR = 4.94, 95% CI 1.10 to 22.13)., Conclusion: This family meetings intervention for primary caregivers of patients with dementia did not postpone patient institutionalization more than usual care., Trial Registration: CONTROLLED-TRIALS.COM ISRCTN90163486.

Background: It is believed that timely recognition and diagnosis of dementia is a pre-condition for improving care for both older adults with dementia and their informal caregivers. However, diagnosing dementia often occurs late in the disease. This means that a significant number of patients with early symptoms of dementia and their informal caregivers may lack appropriate care., Objectives: To compare the effects of case management and usual care among community-dwelling older adults with early symptoms of dementia and their primary informal caregivers., Design: Randomized controlled trial with measurements at baseline and after 6 and 12 months., Setting: Primary care in West-Friesland, the Netherlands., Participants: 99 pairs of community-dwelling older adults with dementia symptoms (defined as abnormal screening for symptoms of dementia) and their primary informal caregivers., Intervention: 12 months of case management by district nurses for both older adults and informal caregivers versus usual care., Primary Outcome: informal caregiver's sense of competence., Secondary Outcomes: caregiver's quality of life, depressive symptoms, and burden, and patient's quality of life. Process measurements: intervention fidelity and caregiver's satisfaction with the quality of case management., Results: Linear mixed model analyses showed no statistically significant and clinically relevant differences over time between the two groups. The process evaluation revealed that intervention fidelity could have been better. Meanwhile, informal caregivers were satisfied with the quality of case management., Conclusion: This study shows no benefits of case management for older adults with dementia symptoms and their primary informal caregivers. One possible explanation is that case management, which has been recommended among diagnosed dementia patients, may not be beneficial if offered too early. However, on the other hand, it is possible that: (1) case management will be effective in this group if more fully implemented and adapted or aimed at informal caregivers who experience more severe distress and problems; (2) case management is beneficial but that it is not seen in the timeframe studied; (3) case management might have undetected small benefits. This has to be established. Trial registration ISCRTN83135728., (Copyright © 2011 Elsevier Ltd. All rights reserved.)

Objective: Although community-based studies reported an increased incidence of depression among demented persons compared with non-demented persons, it is not clear whether this relationship also exists among institutionalised elderly persons. The aim of this study was to compare the prevalence of diagnosed depressive disorders and mood symptoms between demented and non-demented residents living in Dutch homes for the elderly., Methods: Cross-sectional analysis in 16 homes for the elderly of routine outcome measurements by trained nurse assistants using the Resident Assessment Instrument (RAI) between January 2007 and April 2008. Nurse assistants recorded all known medical diagnoses including dementia and depression, as well as a structured observation of the presence or absence of 11 mood symptoms over the last 3 days., Results: 313 demented and 463 non-demented residents with complete data were included (99% of all residents, mean age 84 years). 24.6% of participants were diagnosed with a depressive disorder, with no statistically significant difference between demented and non-demented persons (p = 0.237). Mood symptoms were more prevalent in demented residents (p < 0.001, OR 2.14, 95%CI 1.56-2.93). Among residents with mood symptoms, demented residents were less likely to be diagnosed with a depressive disorder than non-demented residents (p = 0.039, OR 0.61, 95%CI 0.38-0.98)., Conclusions: The prevalence of diagnosed depressive disorders was comparable between demented and non-demented residents. However, demented residents suffered more from mood symptoms and may be at risk of under-diagnosis of depression., ((c) 2009 John Wiley & Sons, Ltd.)

Objective: Living with a demented person has been associated with high levels of clinical depression and anxiety. However, there are no prospective studies that allow good estimates of the incidence of depression and anxiety. In this study, the authors assess the long-term incidence of depression and anxiety in the spouses of patients with dementia as recorded by general practitioners., Design: Prospective naturalistic cohort study with a comparison group. Data from medical records in 2001-2007 were analyzed., Participants: Two hundred eighteen spouses of patients with dementia and 353 age and gender-matched spouses of nondemented persons., Setting: Seventy-one general practices in the Netherlands with a listed source population of 320,309 patients., Measurements: Incidence rates (IRs) per 1,000 person-years and hazard ratios (HRs) of depression and anxiety; prescription rates (per 1,000 person-years) for antidepressants and anxiolytics., Results: A new episode of depression was diagnosed in 18 spouses and 7 comparison spouses (IRs of 18.8/1,000 person-years and 4.4/1,000 person-years, respectively). Spouses of patients with dementia were far more likely to be diagnosed with depression than the comparison spouses (HR, 4.16; 95% CI: 1.73-9.98). Spouses did not have a higher incidence of anxiety than the comparison group (HR, 1.26; 95% CI: 0.58-2.71). The prescription rates for both antidepressants and anxiolytics were significantly higher for spouses than for the comparison group., Conclusion: The spouses of patients with dementia have a fourfold higher risk of a diagnosis of depression than the spouses of nondemented persons. The authors could not establish this for anxiety.

Background: Tailor-made care in dementia requires an individual needs assessment. The Camberwell Assessment of Need for the Elderly (CANE) was developed to assess needs of older people with mental disorders. In this study the validity and reliability of the Dutch version of the CANE were studied among community-dwelling persons with dementia and their informal carers., Method: Interviews were carried out with 236 people with mild to severe dementia and 322 informal carers; 69 informal carers were interviewed twice. Construct and criterion validity and test-retest reliability of the CANE were studied using data for informal carers. Construct validity was also studied for CANE ratings of people with dementia., Results: The construct validity of the CANE was good among people with dementia and informal carers. Criterion validity could be studied for 76.9% of the CANE items, and all significant correlations were convergent. Test-retest reliability of the CANE varied from poor to very good and was best on domains where needs were explicit and problems well defined., Conclusions: Use of the Dutch version of the CANE among community-dwelling people with dementia and their carers is supported by the study results, with the study showing acceptable construct and criterion validity and test-retest reliability of the CANE.

Background: Dementia is a major public health problem with enormous costs to society and major consequences for both patients and their relatives. Family members of persons with dementia provide much of the care for older adults with dementia in the community. Caring for a demented relative is not easy and fraught with emotional strain, distress, and physical exhaustion. Family caregivers of dementia patients have an extremely high risk developing affective disorders such as major depression and anxiety disorder. Family meetings appear to be among the most powerful psychosocial interventions to reduce depression in caregivers. An American landmark study reported substantial beneficial effects of a multifaceted intervention where family meetings had a central place on depression in family caregivers as well as on delay of institutionalization of patients. These effects were not replicated in other countries yet. We perform the first trial comparing only structured family meetings with significant others versus usual care among primary family caregivers of community dwelling demented patients and measure the effectiveness on both depression and anxiety in the primary caregiver, both on disorder and symptom levels., Methods/design: In this randomized controlled trial effectiveness as well as cost-effectiveness of family meetings is evaluated. The intervention group receives four family meetings with family and close friends of the primary family caregiver of a community dwelling patient with a clinical diagnosis of dementia. Dyads of patients and their primary caregiver are followed up to one year after baseline assessment. The main outcome measures are the incidence of anxiety and depressive disorders assessed with the Mini-International Neuropsychiatric Interview (MINI) and the severity of anxiety and depressive symptoms in caregivers is measured by validated self report instruments: the Centre for Epidemiologic Studies Depression Scale (CES-D) for depression and the anxiety scales of the Hospital Anxiety and Depression scales (HADS) for anxiety. The economic evaluation is performed from a societal perspective., Discussion: By evaluating the effectiveness of only structured family meetings organized in the Netherlands, this study will contribute to the existing literature about the value of psychosocial interventions for dementia caregivers., Trial Registration: Dutch Trial Registry ISRCTN90163486.

Background: Earlier reports suggest limited clinical reasoning and substantial uncertainty of GPs in assessing patients suspected of dementia., Objective: To explore the predictors of GPs to decide on the presence and absence of dementia as well as the predictors of diagnostic confidence of GPs., Design: An observational study was set up among 107 patients of 64 GPs. The GPs were instructed to use the Dutch national dementia guideline on consecutive patients newly suspected of dementia and to register their assessment on a detailed form. The predictors of the presence and absence of dementia according to the GPs and their diagnostic confidence were explored by logistic regression analyses., Dependent Variables: (i) presence and absence of dementia according to GPs and (ii) diagnostic confidence., Independent Variables: clinical (cognitive, behavioural, somatic, functional), applications of recommendations, patient related and GP related., Results: Dementia was diagnosed in 67% of the suspected patients. The presence of dementia according to the GPs was positively associated with observed impairment of the higher cognitive functions, absence of depression and female gender of patients. The GPs expressed diagnostic confidence in 58% of the cases. This was positively associated with application of recommendations, ADL dependency, longer duration, informant availability, restless behaviour and a patient's female gender. Use of the Mini Mental Status Examination was not associated with confidence., Conclusions: GPs seem to base the diagnosis of dementia on rational grounds. Application of the dementia guideline's recommendations may contribute to more diagnostic confidence.

Background: Dementia is an incurable disease with devastating consequences for both patients and their relatives. The objective of this study is to describe the study protocol of a randomized controlled trial with assignment to either usual care or case-management by district nurses, among informal caregivers of older adults with dementia symptoms who live at home and the older adults who receive informal care., Methods/design: In this randomized controlled trial, effectiveness as well as cost-effectiveness of case-management is evaluated. It concerns case-management in early-detected patients with dementia symptoms and their primary informal caregivers. Participants are followed up to twelve months after baseline assessment. The main outcome measure of the effect evaluation is the caregiver's sense of competence to care for the older person with dementia symptoms. The economic evaluation is performed from a societal perspective., Discussion: This is one of the first trials on case-management that includes an economic evaluation. In addition, it concerns a tailor-made intervention in early-detected patients with dementia symptoms and their caregivers. The results of this randomized controlled trial will provide valuable information for health professionals and policy makers on effectiveness and cost-effectiveness of early tailor-made case-management for patients and their informal caregivers. Moreover, positive effects will challenge current health care systems to move to more pro-active approaches for this group.

Introduction: This paper provides insight into the development of the Dutch Dementia Care and Support Registry and the lessons that can be learned from it. The aim of this Registry was to contribute to quality improvement in dementia care and support. Methods: This paper describes how the Registry was set up in four stages, reflecting the four FAIR principles: the selection of data sources (Findability); obtaining access to the selected data sources (Accessibility); data linkage (Interoperability); and the reuse of data (Reusability). Results: The linkage of 16 different data sources, including national routine health and administrative data appeared to be technically and legally feasible. The linked data in the Registry offers rich information about (the use of) care for persons with dementia across various healthcare settings, including but not limited to primary care, secondary care, long-term care and medication use, that cannot be obtained from single data sources. Conclusions: A key lesson learned is that in order to reuse the data for quality improvement in practice, it is essential to involve healthcare professionals in setting up the Registry and to guide them in the interpretation of the data. [ABSTRACT FROM AUTHOR]

Introduction: Impaired awareness in dementia caused by Alzheimer's disease and related disorders made study partner-report the preferred method of measuring interference in "instrumental activities of daily living" (IADL). However, with a shifting focus toward earlier disease stages and prevention, the question arises whether self-report might be equally or even more appropriate. The aim of this study was to investigate how participant- and study partner-report IADL perform in a community-based volunteer population without dementia and which factors relate to differences between participant- and study partner-report. Methods: Participants (N = 3,288; 18–97 years, 70.4% females) and their study partners (N = 1,213; 18–88 years, 45.8% females) were recruited from the Dutch Brain Research Registry. IADL were measured using the Amsterdam IADL Questionnaire. The concordance between participant- and study partner-reported IADL difficulties was examined using intraclass correlation coefficient (ICC). Multinomial logistic regressions were used to investigate which demographic, cognitive, and psychosocial factors related to participant and study partner differences, by looking at the over- and underreport of IADL difficulties by the participant, relative to their study partner. Results: Most A-IADL-Q scores represented no difficulties for both participants (87.9%) and study partners (89.4%). The concordance between participants and study partners was moderate (ICC = 0.55, 95% confidence interval [CI] = [0.51, 0.59]); 24.5% (N = 297) of participants overreported their IADL difficulties compared with study partners, and 17.8% (N = 216) underreported difficulties. The presence of depressive symptoms (odds ratio [OR] = 1.31, 95% CI = [1.12, 1.54]), as well as memory complaints (OR = 2.45, 95% CI = [1.80, 3.34]), increased the odds of participants overreporting their IADL difficulties. Higher IADL ratings decreased the odds of participant underreport (OR = 0.71, 95% CI = [0.67, 0.74]). Conclusion: In this sample of community-based volunteers, most participants and study partners reported no major IADL difficulties. Differences between participant and study partner were, however, quite prevalent, with subjective factors indicative of increased report of IADL difficulties by the participant in particular. These findings suggest that self- and study partner-report measures may not be interchangeable, and that the level of awareness needs to be considered, even in cognitively healthy individuals. [ABSTRACT FROM AUTHOR]

Background: Health care systems that succeed in preventing long term care and hospital admissions of frail older people may substantially save on their public spending. The key might be found in high-quality care in the community. Quality Indicators (QIs) of a sufficient methodological level are a prerequisite to monitor, compare, and improve care quality. This systematic review identified existing QIs for community care for older people and assessed their methodological quality. Methods: Relevant studies were identified by searches in electronic reference databases and selected by two reviewers independently. Eligible publications described the development or application of QIs to assess the quality of community care for older people. Information about the QIs, the study sample, and specific setting was extracted. The methodological quality of the QI sets was assessed with the Appraisal of Indicators through Research and Evaluation (AIRE) instrument. A score of 50% or higher on a domain was considered to indicate high methodological quality. Results: Searches resulted in 25 included articles, describing 17 QI sets with 567 QIs. Most indicators referred to care processes (80%) and measured clinical issues (63%), mainly about follow-up, monitoring, examinations and treatment. About two-third of the QIs focussed on specific disease groups. The methodological quality of the indicator sets varied considerably. The highest overall level was achieved on the domain ‘Additional evidence, formulation and usage’ (51%), followed by ‘Scientific evidence’ (39%) and ‘Stakeholder involvement’ (28%). Conclusion: A substantial number of QIs is available to assess the quality of community care for older people. However, generic QIs, measuring care outcomes and non-clinical aspects are relatively scarce and most QI sets do not meet standards of high methodological quality. This study can support policy makers and clinicians to navigate through a large number of QIs and select QIs for their purposes. PROSPERO Registration: 2014:CRD42014007199 [ABSTRACT FROM AUTHOR]

Objectives: The objective of this article was to compare the costs and cost-effectiveness of the two most prominent types of case management in the Netherlands (intensive case management and linkage models) against no access to case management (control group) for people with already diagnosed dementia and their informal caregivers. Methods: The economic evaluation was conducted from a societal perspective embedded within a two year prospective, observational, controlled, cohort study with 521 informal caregivers and community-dwelling persons with dementia. Case management provided within one care organization (intensive case management model, ICMM), case management where care was provided by different care organizations within one region (Linkage model, LM), and a group with no access to case management (control) were compared. The economic evaluation related incremental costs to incremental effects regarding neuropsychiatric symptoms (NPI), psychological health of the informal caregiver (GHQ-12), and quality adjusted life years (QALY) of the person with dementia and informal caregiver. Results: Inverse-propensity-score-weighted models showed no significant differences in clinical or total cost outcomes between the three groups. Informal care costs were significantly lower in the ICMM group compared to both other groups. Day center costs were significantly lower in the ICMM group compared to the control group. For all outcomes, the probability that the ICMM was cost-effective in comparison with LM and the control group was larger than 0.97 at a threshold ratio of 0 €/incremental unit of effect. Conclusion: This study provides preliminary evidence that the ICMM is cost-effective compared to the control group and the LM. However, the findings should be interpreted with caution since this study was not a randomized controlled trial. [ABSTRACT FROM AUTHOR]

Background: The aging society will bring an increase in the number of people with dementia living in the community. This will mean a greater demand on care and welfare services to deliver efficient and customized care, which requires a thorough understanding of subjective and objective care needs. This study aims to assess the needs of community-dwelling people with dementia as reported by themselves and by their informal carers. The study also aims to give insight into the service use and gaps between needs and the availability of services. Methods: 236 community-dwelling people with dementia and 322 informal carers were interviewed separately. (Un)met needs were assessed using the Camberwell Assessment of Needs for the Elderly (CANE). Results: Most unmet needs were experienced in the domains of memory, information, company, psychological distress and daytime activities. People with dementia reported fewer (unmet) needs than their carers. Type and severity of dementia, living situation and informal carer characteristics were related to the number of reported needs. Conclusions: This study showed a large number of unmet needs in dementia. Reasons for unmet needs are lack of knowledge about the existing service offer, a threshold to using services and insufficient services offer. These results provide a good starting point for improving community care for people with dementia. [ABSTRACT FROM AUTHOR]

The Informant Questionnaire on Cognitive Decline (IQCODE) has been successful in identifying demented persons in a general population. In this study, this questionnaire was used as a self-report screening for dementia symptoms. The object was to investigate the feasibility, homogeneity and construct validity of self-reports on the IQCODE. Participants were 4823 community-dwelling older adults who received an IQCODE-SR. Feasibility was assessed on the basis of response rate, the proportion of missing data for each item, and the number of persons who received help in completing the questionnaire. Homogeneity was checked with Cronbach's a. To investigate construct validity hypotheses on performance of the IQCODE-SR were tested. Feasibility was acceptable, with a response rate of 58.9%. Missing answers per item ranged from 2.5% to 7.3%, and 915 of 2841 participants received help in completing the questionnaire. Homogeneity was good, with Cronbach's a = .94. The majority of hypotheses on construct validity were confirmed. It was concluded that the IQCODE-SR meets the basic requirements of a good measurement instrument. [ABSTRACT FROM AUTHOR]

Objective To examine whether a new screening method that identified patients with cognitive impairment who needed further examination on the presence of dementia yielded patients who were not detected by their general practitioner (GP), and to identify factors associated with GPs' awareness of patients identified by the screening. Methods Cross-sectional comparison between two methods used to identify dementia symptoms: (1) usual identification of dementia by GPs; (2) a two-stage screening to identify cognitive impairment. The two methods were implemented on the same older general practice population. The study was set in primary care practices in the Netherlands. The participants were 44 GPs and 2,101 general practice patients aged 75+ who lived at home. The following measurements were used: (1) yield of the screening; (2) determinants of GPs' awareness of patients identified by the screening. Results The two-stage screening yielded 117 patients with cognitive impairment who needed further examination; in most cases (n = 82, 70.1%) their GP was unaware of the symptoms. Among patients identified by the screening, GPs' awareness was associated with co-morbidity of chronic diseases [odds ratio (OR) = 3.19; 95% Confidence Interval (CI) = 1.25 to 8.15], depressive symptoms (OR = 0.41; 95% CI = 0.17 to 0.99), and cognitive functioning (per point on the MMSE, OR = 0.88; 95% CI = 0.79 to 0.98). Conclusion A two-stage screening method and increased alertness for cognitive impairment and dementia among patients with depressive symptoms may improve detection rate of dementia in general practice. Copyright © 2007 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

A letter to the editor is presented concerning a study examining the personal characteristics associated with location of death for people with dementia in the Netherlands which found most people with dementia as a cause of death died in long term care facilities.

Objective: To evaluate outcomes for persons with dementia and primary informal caregivers of 2 types of implemented case management (intensive case management [ICMM] and linkage [LM] models) with no case management (control group). Design: A pragmatic trial using a prospective, observational, controlled, cohort study. Setting: Community care in the Netherlands. Participants: A total of 521 dyads. Intervention: Case management provided within one care organization (ICMM), case management where multiple case management organizations are present within one region (LM), and a group with no access to case management (control). Measurements: Neuropsychiatric problems in persons with dementia assessed by the Neuropsychiatric Inventory (NPI) and psychological health in informal caregivers as measured with the General Health Questionnaire (GHQ-12). Secondary outcomes included care and support needs, quality of life, and institutionalization. Comparability of groups at baseline was secured by inverse-propensity-score-weighted mixed models. Results: No significant differences in changes in total NPI or GHQ-12 scores between the groups over 2 years were found. Secondary outcomes showed better quality-of-life scores for informal caregivers in the ICMM than the LM. Total needs, met and unmet care needs were significantly less in the ICMM compared with the control group. Conclusion: Neither case management type affected clinical outcomes of dyads meaningfully. The ICMM has positive impact on caregivers' quality of life and patient's number of needs compared with persons in LM and persons without access to case management respectively. [ABSTRACT FROM AUTHOR]