Costs of care trajectories of people with dementia compared with matched controls. Longitudinal analysis of linked health and administrative data.

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.

The effect of current antithrombotic therapy on mortality in nursing home residents with COVID-19: a multicentre retrospective cohort study.

BACKGROUND: The first wave of COVID led to an alarmingly high mortality rate among nursing home residents (NHRs). In hospitalised patients, the use of anticoagulants may be associated with a favourable prognosis. However, it is unknown whether the use of antithrombotic medication also protected NHRs from COVID-19-related mortality. OBJECTIVES: To investigate the effect of current antithrombotic therapy in NHRs with COVID-19 on 30-day all-cause mortality during the first COVID-19 wave. METHODS: We performed a retrospective cohort study linking electronic health records and pharmacy data in NHRs with COVID-19. A propensity score was used to match NHRs with current use of therapeutic dose anticoagulants to NHRs not using anticoagulant medication. The primary outcome was 30-day all-cause mortality, which was evaluated using a logistic regression model. In a secondary analysis, multivariable logistic regression was performed in the complete study group to compare NHRs with current use of therapeutic dose anticoagulants and those with current use of antiplatelet therapy to those without such medication. RESULTS: We included 3521 NHRs with COVID-19 based on a positive RT-PCR for SARS-CoV-2 or with a well-defined clinical suspicion of COVID-19. In the matched propensity score analysis, NHRs with current use of therapeutic dose anticoagulants had a significantly lower all-cause mortality (OR = 0.73; 95% CI: 0.58-0.92) compared to NHRs who did not use therapeutic anticoagulants. In the secondary analysis, current use of therapeutic dose anticoagulants (OR: 0.62; 95% CI: 0.48-0.82) and current use of antiplatelet therapy (OR 0.80; 95% CI: 0.64-0.99) were both associated with decreased mortality. CONCLUSIONS: During the first COVID-19 wave, therapeutic anticoagulation and antiplatelet use were associated with a reduced risk of all-cause mortality in NHRs. Whether these potentially protective effects are maintained in vaccinated patients or patients with other COVID-19 variants, remains unknown.

Setting up a Governance Framework for Secondary Use of Routine Health Data in Nursing Homes: Development Study Using Qualitative Interviews.

BACKGROUND: In the nursing home sector, reusing routinely recorded data from electronic health records (EHRs) for knowledge development and quality improvement is still in its infancy. Trust in appropriate and responsible reuse is crucial for patients and nursing homes deciding whether to share EHR data for these purposes. A data governance framework determines who may access the data, under what conditions, and for what purposes. This can help obtain that trust. Although increasing attention is being paid to data governance in the health care sector, little guidance is available on development and implementation of a data governance framework in practice. OBJECTIVE: This study aims to describe the development process of a governance framework for the "Registry Learning from Data in Nursing Homes," a national registry for EHR data on care delivered by nursing home physicians (in Dutch: specialist ouderengeneeskunde) in Dutch nursing homes-to allow data reusage for research and quality improvement of care. METHODS: Relevant stakeholders representing practices, policies, and research in the nursing home sector were identified. Semistructured interviews were conducted with 20 people from 14 stakeholder organizations. The main aim of the interviews was to explore stakeholders' perspectives regarding the Registry's aim, data access criteria, and governing bodies' tasks and composition. Interview topics and analyses were guided by 8 principles regarding governance for reusing health data, as described in the literature. Interview results, together with legal advice and consensus discussions by the Registry's consortium partners, were used to shape the rules, regulations, and governing bodies of the governance framework. RESULTS: Stakeholders valued the involvement of nursing home residents and their representatives, nursing home physicians, nursing homes' boards of directors, and scientists and saw this as a prerequisite for a trustworthy data governance framework. For the Registry, involvement of these groups can be achieved through a procedure in which residents can provide their consent or objection to the reuse of the data, transparency about the decisions made, and providing them a position in a governing body. In addition, a data request approval procedure based on predefined assessment criteria indicates that data reuse by third parties aligns with the aims of the Registry, benefits the nursing home sector, and protects the privacy of data subjects. CONCLUSIONS: The stakeholders' views, expertise, and knowledge of other frameworks and relevant legislation serve to inform the application of governance principles to the contexts of both the nursing home sector and the Netherlands. Many different stakeholders were involved in the development of the Registry Learning from Data in Nursing Homes' governance framework and will continue to be involved. Engagement of the full range of stakeholders in an early stage of governance framework development is important to generate trust in appropriate and responsible data reuse.

Psychotropic drug prescription rates in primary care for people with dementia from recorded diagnosis onwards.

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.

Predicting unplanned hospital visits in older home care recipients: a cross-country external validation study.

BACKGROUND: Accurate identification of older persons at risk of unplanned hospital visits can facilitate preventive interventions. Several risk scores have been developed to identify older adults at risk of unplanned hospital visits. It is unclear whether risk scores developed in one country, perform as well in another. This study validates seven risk scores to predict unplanned hospital admissions and emergency department (ED) visits in older home care recipients from six countries. METHODS: We used the IBenC sample (n = 2446), a cohort of older home care recipients from six countries (Belgium, Finland, Germany, Iceland, Italy and The Netherlands) to validate four specific risk scores (DIVERT, CARS, EARLI and previous acute admissions) and three frailty indicators (CHESS, Fried Frailty Criteria and Frailty Index). Outcome measures were unplanned hospital admissions, ED visits or any unplanned hospital visits after 6 months. Missing data were handled by multiple imputation. Performance was determined by assessing calibration and discrimination (area under receiver operating characteristic curve (AUC)). RESULTS: Risk score performance varied across countries. In Iceland, for any unplanned hospital visits DIVERT and CARS reached a fair predictive value (AUC 0.74 [0.68-0.80] and AUC 0.74 [0.67-0.80]), respectively). In Finland, DIVERT had fair performance predicting ED visits (AUC 0.72 [0.67-0.77]) and any unplanned hospital visits (AUC 0.73 [0.67-0.77]). In other countries, AUCs did not exceed 0.70. CONCLUSIONS: Geographical validation of risk scores predicting unplanned hospital visits in home care recipients showed substantial variations of poor to fair performance across countries. Unplanned hospital visits seem considerably dependent on healthcare context. Therefore, risk scores should be validated regionally before applied to practice. Future studies should focus on identification of more discriminative predictors in order to develop more accurate risk scores.

Caregivers' perspectives on good care for nursing home residents with Korsakoff syndrome.

BACKGROUND: In the Netherlands, people with severe cognitive deficits due to Korsakoff syndrome are generally admitted to a specialized nursing home. Professional caregivers experience that these residents are often not aware of their deficits, and consequently, their willingness to accept care is relatively low. However, these residents need permanent support when performing daily tasks due to severe cognitive deficits. The combination of objective care needs and low subjective responsiveness makes caring for people with Korsakoff syndrome a complex undertaking. It is unknown how professional caregivers deal with this complex task and how they manage the associated ethical challenges. OBJECTIVES: The aim of this study was to explore the professional caregivers' perspectives on good care for residents with Korsakoff syndrome. METHODS: A qualitative study design was used. Data were collected via semi-structured interviews. The Framework Method was used for the thematic analyses of the interview data. PARTICIPANTS AND RESEARCH CONTEXT: Five specialized nursing homes participated in this study. Twelve professional caregivers, including nurses, nursing assistants, and support workers, were selected based on the ability to provide rich information on the study topics and to capture a variety of demographic and professional characteristics. ETHICAL CONSIDERATIONS: The institutional review board of the VU University Medical Center Amsterdam approved the research protocol. The study was conducted in accordance with the ethical principles for medical research involving human subjects. FINDINGS: Three perspectives on good care emerged: (1) making daily life a joint effort, (2) being steadfast, and (3) treating with respect. DISCUSSION AND CONCLUSION: Professional caregivers try to achieve responsiveness in people with Korsakoff syndrome in three different ways. These perspectives reflect fundamentally different views on the care relationship and the autonomy of the resident. By elucidating the three perspectives, we hope to promote the practitioners' reflection on their own ideas about good care for people with Korsakoff syndrome.

Cost-effectiveness of the Namaste care family program for nursing home residents with advanced dementia in comparison with usual care: a cluster-randomized controlled trial.

BACKGROUND: Dementia is a progressive disease that decreases quality of life of persons with dementia and is associated with high societal costs. The burden of caring for persons with dementia also decreases the quality of life of family caregivers. The objective of this study was to assess the societal cost-effectiveness of Namaste Care Family program in comparison with usual care in nursing home residents with advanced dementia. METHODS: Nursing homes were randomized to either Namaste Care Family program or usual care. Outcome measures of the cluster-randomized trial in 231 residents included Quality of Life in Late-Stage Dementia (QUALID) and the Gain in Alzheimer Care Instrument (GAIN) for family caregivers over 12 months of follow-up. Health states were measured using the EQ-5D-3L questionnaire which were translated into utilities. QALYs were calculated by multiplying the amount of time a participant spent in a specific health state with the utility score associated with that health state. Healthcare utilization costs were estimated using standard unit costs, while intervention costs were estimated using a bottom-up approach. Missing cost and effect data were imputed using multiple imputation. Bootstrapped multilevel models were used after multiple imputation. Cost-effectiveness acceptability curves were estimated. RESULTS: The Namaste Care Family program was more effective than usual care in terms of QUALID (- 0.062, 95%CI: - 0.40 to 0.28), QALY (0.0017, 95%CI: - 0.059 to 0.063) and GAIN (0.075, 95%CI: - 0.20 to 0.35). Total societal costs were lower for the Namaste Care Family program as compared to usual care (- 552 €, 95%CI: - 2920 to 1903). However, these differences were not statistically significant. The probability of cost-effectiveness at a ceiling ratio of 0 €/unit of effect extra was 0.70 for the QUALID, QALY and GAIN. CONCLUSIONS: The Namaste Care Family program is dominant over usual care and, thus, cost-effective, although statistical uncertainty was considerable. TRIAL REGISTRATION: Netherlands Trial Register ( http://www.trialregister.nl/trialreg/index.asp , identifier: NL5570, date of registration: 2016/03/23).

Time from diagnosis to institutionalization and death in people with dementia.

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.

Awareness and its relationships with neuropsychiatric symptoms in people with Korsakoff syndrome or other alcohol-related cognitive disorders living in specialized nursing homes.

OBJECTIVES: Impaired awareness of functional deficits is often observed in people with Korsakoff syndrome (KS) and may result in refusal of care, although this area has been understudied. This study aimed to investigate levels of impaired awareness and their relationships with neuropsychiatric symptoms (NPS) in people with KS residing in specialized nursing homes. METHODS: A cross-sectional, observational study was conducted among 215 residents with KS or other alcohol-related cognitive disorders. Awareness was measured with the Patient Competency Rating Scale (PCRS). NPS and subsyndromes were measured with the Neuropsychiatric Inventory-Questionnaire (NPI-Q). Adjusted multilevel regression analyses were performed to examine the relationships between the level of awareness and NPS. RESULTS: The mean level of impaired awareness was 39.3 (SD = 19.9) indicating moderate impairment. Twenty-nine percent of the residents had no or mildly impaired awareness; 37% were moderately impaired, and 34% were severely impaired. Residents with moderately impaired awareness showed more severe apathy than residents with no or mildly impaired awareness (difference 1.23; 95% CI 1.02-1.48; p = 0.03). No associations were found between the level of awareness and other NPI outcomes. Cognitive functioning seems to have the strongest impact on the association between level of awareness and NPS in KS residents. CONCLUSIONS: Impaired awareness of functional deficits is highly common in KS residents; however, apart from apathy, is not significantly related with NPS. Additional research should further examine, which interventions are effective in dealing with impaired awareness in these people, particularly when apathy is present.

Risk factors for suicidal thoughts in informal caregivers: results from the population-based Netherlands mental health survey and incidence Study-2 (NEMESIS-2).

BACKGROUND: Previous research suggests that family caregivers contemplate suicide at a higher rate than the general population. Much of this research has been disease specific and in relatively small samples. This study aimed to compare suicidal thoughts between non-caregivers and informal caregivers of people with a variety of conditions, in a large representative sample, and to identify significant risk factors. METHODS: The general population study NEMESIS-2 (N at baseline = 6646) included 1582 adult caregivers at the second wave (2010-2012) who also participated at the third wave (2013-2015). Suicidal thoughts were assessed over 4 years, with the Suicidality Module of the Composite International Diagnostic Interview 3.0. The presence of suicidal thoughts was estimated and risk factors for suicidal thoughts were assessed with logistic regression analyses adjusted for age and gender. RESULTS: Thirty-six informal caregivers (2.9%) reported suicidal thoughts during the 4 year study period. The difference between caregivers and non-caregivers (3.0%) was not significant. Among caregivers, significant risk factors for suicidal thoughts included being unemployed, living without a partner, having lower levels of social support, having a chronic physical disorder, a mood disorder or an anxiety disorder, and having impaired social, physical and emotional functioning. These risk factors were also found in non-caregivers. No caregiving-related characteristics were associated with suicidal thoughts. CONCLUSION: There was no elevated rate of suicidal thoughts in caregivers and risk factors for suicidal thoughts in caregivers were consistent with risk factors in non-caregivers. No association between caregiving characteristics and suicidal thoughts was found. Caregivers with limited resources and in poorer health might still benefit from prevention and intervention efforts.

Performance on bedside tests of attention and organized thinking in patients with dementia free from delirium.

ABSTRACTObjectives:Bedside tests of attention and organized thinking were performed in patients with cognitive impairment or dementia but without delirium, to provide estimates of false positive rates for detecting delirium superimposed on dementia (DSD). DESIGN AND SETTING: This cross-sectional study was conducted in outpatients and institutionalized patients without delirium representing a wide spectrum of severity of cognitive impairments. PARTICIPANTS: Patients with dementia or a cognitive disorder according to DSM IV criteria, after exclusion of (suspected) delirium according to DSM IV criteria. MEASUREMENTS: Tests for inattention and disorganized thinking from the CAM-ICU were assessed. RESULTS: The sample included 163 patients (mean age 83 years (SD 6; 64% women)), with Alzheimer's disease as most prevalent (45%) diagnosis and a mean MMSE-score of 16.8 (SD 7.5). False positive rates of the test of attention varied from 0.04 in patients with normal to borderline cognitive function to 0.8 in those with severe dementia. The false positive rate of the test of disorganized thinking was zero in the normal to borderline group, increasing to 0.67 in patients with severe dementia. When combining test results false positive rates decreased to 0.03 in patients with MMSE scores above 9. CONCLUSION: Use of simple bedside tests of attention and organized thinking for the clinical diagnosis of DSD will result in high rates of false positive observations if used regardless of the severity of dementia. However, if test results are combined they may be useful to exclude DSD in patients with minimal to moderate degrees of dementia, but not in the severe group.

The occurrence and persistence of thoughts of suicide, self-harm and death in family caregivers of people with dementia: a longitudinal data analysis over 2 years.

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.

The impact of a visual arts program on quality of life, communication, and well-being of people living with dementia: a mixed-methods longitudinal investigation.

ABSTRACTBackground:Research reviews highlight methodological limitations and gaps in the evidence base for the arts in dementia care. In response, we developed a 12-week visual art program and evaluated the impact on people living with dementia through a mixed-methods longitudinal investigation. METHODS: One hundred and twenty-five people living with mild to severe dementia were recruited across three research settings in England and Wales (residential care homes, a county hospital, and community venues). Quantitative and qualitative data on quality of life (QoL), communication and perceptions of the program were obtained through interviews and self-reports with participants and their carers. Eight domains of well-being were measured using a standardized observation tool, and data compared to an alternative activity with no art. RESULTS: Across all sites, scores for the well-being domains of interest, attention, pleasure, self-esteem, negative affect, and sadness were significantly better in the art program than the alternative condition. Proxy-reported QoL significantly improved between baseline and 3-month follow-up, but no improvements in QoL were reported by the participants with dementia. This was contrasted by their qualitative accounts, which described a stimulating experience important for social connectedness, well-being, and inner-strength. Communication deteriorated between baseline and follow-up in the hospital setting, but improved in the residential care setting. CONCLUSIONS: The findings highlight the potential for creative aging within dementia care, the benefits of art activities and the influence of the environment. We encourage dementia care providers and arts and cultural services to work toward embedding art activities within routine care provision.

Prevalence and severity of behavioural symptoms in patients with Korsakoff syndrome and other alcohol-related cognitive disorders: a systematic review.

OBJECTIVE: Experiences from clinical practice suggest that behavioural symptoms in patients with Korsakoff syndrome (KS) are a frequent problem. Knowledge about behavioural symptoms is important in understanding and managing these symptoms. The aim of this study is to review the prevalence and severity of behavioural symptoms in KS. METHODS: Relevant articles were identified by searching Medline (PubMed), PsycINFO, Embase and CINAHL up to 4 June 2014. Two reviewers independently selected the studies, extracted their baseline data and assessed methodological quality using a standardized checklist. RESULTS: Fifteen studies fulfilled the inclusion criteria. A diversity of diagnoses was used indicating that KS and other alcohol-related cognitive disorders and terms were used interchangeably. None of the studies were primarily designed to estimate the prevalence or severity of behavioural symptoms in patients with KS. Most studies had serious methodological limitations. The reported prevalence estimates of behavioural symptoms in the included studies varied strongly. Most prevalent were depressive symptoms and disorders (2-50%, median 27%) and agitation and aggression (10-54%, median 27%). None of the reported, mean severity estimates met pathological thresholds. The highest severity estimates were found for apathy. CONCLUSIONS: Good quality studies on behavioural symptoms in patients with KS are lacking. Observational research designed to provide reliable estimates of the prevalence and severity of behavioural symptoms in patients with KS is needed. This could improve understanding and managing these symptoms and help care staff to better support the needs of this specific patient group. Copyright © 2016 John Wiley & Sons, Ltd.

What are the essential features of resilience for informal caregivers of people living with dementia? A Delphi consensus examination.

OBJECTIVES: Few studies have examined what might enable or prevent resilience in carers of people with dementia. Consequently, there are limited insights as to how it should be understood, defined and measured. This creates challenges for research, and also practice in terms of how it might best be promoted. This study aimed to address these limitations and add new insights, identifying the essential features of resilience in dementia caregiving. METHODS: A Delphi consensus study was conducted, consulting a multi-disciplinary panel of informal caregivers and experts with relevant professional expertise. Panellists rated the relevance of various statements addressing essential components of resilience; 'adversity' and 'successful caregiving' on a 5-point Likert scale. Based on the median and Inter Quartile Range, the most relevant statements with moderate consensus were proposed in Round 2 in which panellists selected up to five statements in order of importance. RESULTS: Moderate consensus was reached for all statements after two rounds. Patients' behavioural problems and feeling competent as a caregiver were selected by both caregivers and professionals as essential resilience features. Caregivers also emphasized the importance of social support, the quality of the relationship with their relative and enjoying spending time together. Professionals considered coping skills, experiencing positive aspects of caregiving, and a good quality of life of caregivers most relevant. CONCLUSION: The essential elements of resilience selected from multiple stakeholder perspectives can be used to select appropriate outcomes for intervention studies and give guidance to policy to support caregivers more effectively and better tailored to their needs.

Factors of Resilience in Informal Caregivers of People with Dementia from Integrative International Data Analysis.

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.

[Implementation and (cost-)effectiveness of case management for people with dementia and their informal caregivers: results of the COMPAS study]. / Implementatie en (kosten-)effectiviteit van casemanagement voor mensen met dementie en hun mantelzorgers: resultaten van de COMPAS-studie.

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.

Predictors of Societal Costs in Dementia Patients and Their Informal Caregivers: A Two-Year Prospective Cohort Study.

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.

The two-year incidence of depression and anxiety disorders in spousal caregivers of persons with dementia: who is at the greatest risk?

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.

Does an outreaching stepped care program reduce depressive symptoms in community-dwelling older adults? A randomized implementation trial.

OBJECTIVES: To examine the effects of an outreaching stepped care intervention program (Lust for Life) compared with usual care on depressive symptoms in older adults living in the community. DESIGN: Randomized clinical implementation trial. SETTING: 18 general practices and a home care organization in the Netherlands. PARTICIPANTS: 263 community-dwelling 65+-year-olds with depressive symptoms according to the Patient Health Questionnaire-9 (PHQ-9). INTERVENTION: After three months of watchful waiting, participants could sequentially choose between the following evidence-based interventions: 1) guided self-help or an exercise program, 2) problem solving treatment or life review, and 3) a referral to their general practitioner. MEASUREMENTS: The outcome measure was depression severity (PHQ-9), measured every three months over 2 years. RESULTS: After the provision of the stepped care program, a significant short-term positive effect on depressive symptoms was found in the first three months after implementation, in which average PHQ-9 scores dropped from 9.34 (SE: 0.61, 95% CI: 8.14-10.5) to 7.83 (SE: 0.51, 95% CI: 6.84-8.81). CONCLUSIONS: The Lust for Life program has a promising potential to relieve depressive symptoms of older adults in primary care in the short term. Providing one single clinical intervention in accordance with participants' choices instead of stepped care could be sufficient.