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Psychotropic drugs (PD) are often prescribed to nursing home residents with Korsakoff syndrome (KS). It is unknown whether these drugs are prescribed correctly or whether they are prescribed off-label, for example, to treat behavioral symptoms. To get more insight into PD prescriptions, a descriptive study was performed. The type, category and indications of PD prescriptions of 285 participants were analyzed using medication charts and questionnaires. Behavioral symptoms were investigated with the Neuropsychiatric Inventory-Questionnaire. The results showed that atypical antipsychotics (57.1%) were prescribed more frequently than typical antipsychotics (49.3%). Of the antidepressants, selective serotonin/norepinephrine reuptake inhibitors (63.1%) were most frequently prescribed, followed by tricyclic antidepressants (23.4%). Of the benzodiazepines, anxiolytics (85.7%) were more prescribed than hypnotics (24.5%). Besides psychiatric disorders, PD were also prescribed to treat behavioral symptoms varying from 29.9% (antipsycho-tics) to 26.3% (benzodiazepines) and 9.3% (antidepressants). Furthermore, prescriptions were high if behavioral symptoms were present. To conclude, PD are often prescribed to residents with KS for an unapproved indication, namely behavioral symptoms. Additional research is needed to obtain further insight into the current prescribing culture and the effectiveness of PD. The insights thus obtained may, ultimately, contribute to the appropriate prescription of PD for people with KS.

Difficulties in performing activities of daily living (ADL) are common in patients with Korsakoff‘s syndrome (KS). The aim of this study was to identify factors associated with ADL dependence in nursing home residents with KS. This exploratory, cross-sectional study included 281 residents with KS from 9 specialized nursing homes in the Netherlands. We examined demographic, cognitive, somatic, and (neuro)psychiatric characteristics. ADL dependence was assessed with the Inter-RAI ADL Hierarchy Scale. Multivariable logistic regression analyses were used to identify factors associated with ADL dependence. Cognitive impairment (odds ratio [OR] = 7.46; 95% confidence interval [CI] = 2.10–30.5), female gender (OR = 3.23; CI, 1.21–8.78), staying in a nursing home for ≥5 years (OR = 3.12; CI, 1.24–8.33), and impaired awareness (OR = 4.25; CI, 1.56–12.32) were significantly associated with higher ADL dependence. Chronic obstructive pulmonary disease (COPD) was significantly associated with lower ADL dependence (OR = 0.31; CI, 0.01–0.84). The model explained 32% of the variance. The results suggest that when choosing interventions aimed at improving ADL functioning, special attention should be paid to residents living more than five years in the nursing home, with a female gender, with more severe cognitive impairments, and/or with COPD.

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.

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.

Background: The COVID-19 pandemic has a large impact worldwide and is known to particularly affect the older population. This paper outlines the protocol for external validation of prognostic models predicting mortality risk after presentation with COVID-19 in the older population. These prognostic models were originally developed in an adult population and will be validated in an older population (≥70 years of age) in three healthcare settings: the hospital setting, the primary care setting, and the nursing home setting. Methods: Based on a living systematic review of COVID-19 prediction models, we identified eight prognostic models predicting the risk of mortality in adults with a COVID-19 infection (five COVID-19 specific models: GAL-COVID-19 mortality, 4C Mortality Score, NEWS2+ model, Xie model, and Wang clinical model and three pre-existing prognostic scores: APACHE-II, CURB65, SOFA). These eight models will be validated in six different cohorts of the Dutch elder population, three hospital cohorts, two primary care cohorts, and a nursing home cohort. All prognostic models will be validated in hospital setting while the GAL-COVID-19 mortality model will be validated in hospital, primary care, and nursing home settings. The study will include individuals ≥70 years of age with a highly suspected or PCR-confirmed COVID-19 infection from March 2020 to December 2020 (and up to December 2021 in a sensitivity analysis). The predictive performance will be evaluated in terms of discrimination, calibration, and decision curves for each of the COVID-19 prognostic models in each cohort individually. For prognostic models with indications of miscalibration, an intercept update will be performed after which predictive performance will be re-evaluated. Discussion:Insight into the performance of existing prognostic models in one of the most vulnerable populations clarifies the extent to which tailoring of COVID-19 prognostic models is needed when models are applied to the older population. Such insight will be important for possible future waves of the COVID-19 pandemic or future pandemics.

ObjectivesTo evaluate the feasibility, facilitators of and barriers to delivering Namaste Care by volunteers and family carers to community-dwelling people with dementia, and to map family carers and volunteers’ experiences with the programme.DesignQualitative interview study with two phases: (1) preparation phase; (2) pilot phase.SettingPrivate residences of community-dwelling people with dementia in the UK and the Netherlands.ParticipantsFamily carers and volunteers of community-dwelling people with dementia (phase 1: 36 Dutch interviews, phase 2: 9 Dutch and 16 UK interviews).InterventionNamaste Care is a multicomponent psychosocial programme, originally developed for people with dementia residing in long-term care facilities. Meaningful activities were offered by carers and volunteers. Each person with dementia was offered 10 one-hour sessions.ResultsPhase 1: Namaste Care was deemed feasible for community-dwelling people with dementia and no major adaptations to the programme were considered necessary. Phase 2: perceived effects of Namaste Care on people with dementia included improved mood and increased interaction. The programme appeared enriching for both family carers and volunteers, providing joy, respite from care and new insights for coping with challenging behaviour. A flexible attitude of the Namaste provider facilitated its delivery. High caregiver burden and a strained relationship between the family carer and person with dementia were considered barriers. Experiences of family carers and volunteers with Namaste Care were very positive (mean satisfaction rating: 8.7 out of 10, SD=0.9, range 7–10).ConclusionWe recommend offering Namaste Care delivered by volunteers, preferably multiple sessions per week of 1.5–2 hours to optimise quality of life of community-dwelling people with dementia. Working with well-matched, flexible Namaste providers is pivotal. Family involvement should be encouraged, although the extent should be adapted depending on preference, caregiver burden and the relationship between the family carer and the person with dementia.Trial registration numberNL5570

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.

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.

Background and Objectives Arts activities can improve social connectedness and foster reciprocity between people living with dementia and their caregivers. The extent to which the arts can help shape attitudes towards dementia remains unclear. This paper explores the impact of a 12-week visual arts program “Dementia and Imagination” on the attitudes of family and professional caregivers through a mixed-methods longitudinal investigation, underpinned by a conceptual framework of the arts in dementia care. Research Design and Methods One hundred and forty-six family and professional caregivers were recruited across three settings in England and Wales (residential care homes, a county hospital, and community venues). Quantitative and qualitative data on caregivers’ attitudes and perceptions of the impact of the arts program were collected through interviews at three time points. Results Thematic analysis identified four themes shared across the caregivers: (1) Recognizing capabilities, (2) Social connectedness, (3) Improvements to well-being, and (4) Equality and personhood. Two further themes were distinct to family caregivers: (5) Duration of the effects of the art program, and (6) Enriched perspective. The final theme Inspiring professional development was distinct to the professional caregivers. The quantitative analysis found no effect for caregivers’ attitude change over time. Family caregivers scored significantly lower than professional caregivers at each of the three time points. Discussion and Implications Art programs have the potential to make visible the capabilities of the people living with dementia, enabling caregivers to see the person behind the condition. This study highlights practice implications for future implementation, such as the role of the arts in dementia care education.

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.

Introduction Family caregivers often experience guilt after nursing home placement. The aim of the present study was to describe family caregivers’ guilt over time and assess the impact of conflicts with staff and satisfaction with care on guilt. Method Data of 222 family caregivers at three assessments during one-year follow-up were used. In addition to caregivers’ guilt and the variables conflicts with staff and satisfaction with the care, potential confounders were measured: sociodemographic data, clinical characteristics of the person with dementia, and caregiver burden. Linear mixed model analyses were performed to examine the longitudinal relationships between variables. Results Guilt remained stable over time. Unadjusted models showed that conflicts with staff were positively associated with guilt ( β = 0.11; p < 0.001; 95% CI: 0.06 to 0.16) and satisfaction with care showed a negative association with guilt ( β = −0.10; p< 0.05; 95% CI: −0.18 to −0.01). After adjusting for the confounders, only the positive association of guilt with conflicts with staff was similar as in the unadjusted analysis ( β = 0.11; p < 0.001; 95% CI: 0.05 to 0.16), whereas satisfaction with care was not significantly associated with guilt in the adjusted analyses ( β = −0.07; p = 0.10; 95% CI: −0.16 to 0.01). Discussion More conflicts with staff are associated with stronger guilt feelings. Guilt feelings are experienced by caregivers even after the admission of the person with dementia, and they remain stable over time. Further studies should focus on how to address guilt in family caregivers of people with dementia living in nursing homes.

BackgroundIdentification of community-dwelling older adults at risk of unplanned hospitalizations is of importance to facilitate preventive interventions. Our objective was to review and appraise the methodological quality and predictive performance of prediction models for predicting unplanned hospitalizations in community-dwelling older adultsMethods and findingsWe searched MEDLINE, EMBASE and CINAHL from August 2013 to January 2021. Additionally, we checked references of the identified articles for the inclusion of relevant publications and added studies from two previous reviews that fulfilled the eligibility criteria. We included prospective and retrospective studies with any follow-up period that recruited adults aged 65 and over and developed a prediction model predicting unplanned hospitalizations. We included models with at least one (internal or external) validation cohort. The models had to be intended to be used in a primary care setting. Two authors independently assessed studies for inclusion and undertook data extraction following recommendations of the CHARMS checklist, while quality assessment was performed using the PROBAST tool. A total of 19 studies met the inclusion criteria. Prediction horizon ranged from 4.5 months to 4 years. Most frequently included variables were specific medical diagnoses (n = 11), previous hospital admission (n = 11), age (n = 11), and sex or gender (n = 8). Predictive performance in terms of area under the curve ranged from 0.61 to 0.78. Models developed to predict potentially preventable hospitalizations tended to have better predictive performance than models predicting hospitalizations in general. Overall, risk of bias was high, predominantly in the analysis domain.ConclusionsModels developed to predict preventable hospitalizations tended to have better predictive performance than models to predict all-cause hospitalizations. There is however substantial room for improvement on the reporting and analysis of studies. We recommend better adherence to the TRIPOD guidelines.

Objectives: In the first months of 2021, the Dutch COVID-19 vaccination campaign was disturbed by reports of death in Norwegian nursing homes (NHs) after vaccination. Reports predominantly concerned persons >65 years of age with 1 or more comorbidities. Also, in the Netherlands adverse events were reported after COVID-19 vaccination in this vulnerable group. Yet, it was unclear whether a causal link between vaccination and death existed. Therefore, we investigated the risk of death after COVID-19 vaccination in Dutch NH residents compared with the risk of death in NH residents prior to the COVID-19 pandemic. Design: Population-based longitudinal cohort study with electronic health record data. Setting and Participants: We studied Dutch NH residents from 73 NHs who received 1 or 2 COVID-19 vaccination(s) between January 13 and April 16, 2021 (n = 21,762). As a historical comparison group, we included Dutch NH residents who were registered in the same period in 2019 (n = 27,591). Methods: Data on vaccination status, age, gender, type of care, comorbidities, and date of NH entry and (if applicable) discharge or date of death were extracted from electronic health records. Risk of death after 30 days was evaluated and compared between vaccinated residents and historical comparison residents with Kaplan-Meier and Cox regression analyses. Regression analyses were adjusted for age, gender, comorbidities, and length of stay. Results: Risk of death in NH residents after one COVID-19 vaccination (regardless of whether a second vaccination was given) was decreased compared with historical comparison residents from 2019 (adjusted HR 0.77, 95% CI 0.69-0.86). The risk of death further decreased after 2 vaccinations compared with the historical comparison group (adjusted HR 0.57, 95% CI 0.50-0.64). Conclusions and Implications: We found no indication that risk of death in NH residents is increased after COVID-19 vaccination. These results indicate that COVID-19 vaccination in NH residents is safe and could reduce fear and resistance toward vaccination.

Objectives: We aimed to explore the effects of the Dutch COVID-19 lockdown (March 20–May 25, 2020) on mood, behavior, and social and cognitive functioning of older residents of long-term care facilities (LTCFs) prospectively. Design: Mixed methods: historically controlled longitudinal cohort study and focus groups. Setting and Participants: Residents of Dutch LTCFs. Methods: Residents who were assessed during and prior to the lockdown were compared to residents of the same wards with 2 assessments prior to the lockdown. We used mixed models and generalized estimating equation analyses to explore differences in changes in mood, withdrawal and aggressive behavior, loneliness and conflict, and cognition and delirium. We also explored whether the effect of the lockdown differed for different subgroups. In 2 online focus groups, LTCF care professionals, ranging from care staff to physicians, reflected on their experiences of the effect of the lockdown and the cohort study results. Results: The lockdown group of 298 residents was compared to the control group of 625 residents. Self-reported mood symptoms showed a slightly greater increase during the lockdown. During the first half of the lockdown, the level of conflict with other residents decreased whereas it increased in the control group. The subgroup with moderate-severe cognitive impairment showed a decrease in withdrawal during the lockdown, whereas the group with no-mild cognitive impairment showed a statistically nonsignificant relative increase. Professionals described great individual variation in the effects of the lockdown on residents. Facilities attempted to preserve the experienced positive effects, for example, by promoting tranquility in shared rooms and continuing to organize individualized ward-based activities. Conclusions and Implications: We did not find clinically relevant negative effects of the lockdown on mood, behavior, and social and cognitive functioning in older residents of LTCFs at the group level. Possibly, staff mitigated the negative effects at the group level. Meanwhile, they learned lessons that they continue to apply to enhance resident well-being.

Contains fulltext : 238038.pdf (Publisher’s version ) (Open Access) AIM: To compare the Positive Experiences Scale (PES), Gain in Alzheimer Care INstrument (GAIN) and Positive Aspects of Caregiving (PAC) in assessing positive caregiving experiences among caregivers of nursing home residents with dementia, and to explore which caregiver and care recipient characteristics relate to positive caregiving experiences. METHODS: A total of 63 caregivers (mean age 59.2 years; SD 11.8) of nursing home residents with dementia from four Dutch nursing homes participated in this cross-sectional observational study. Internal consistency, convergent validity and user-friendliness (i.e. perception of item relevance and comprehensibility, ease of use, missing items, and user preference) were examined using Cronbach's alpha's, correlation coefficients and descriptive statistics, respectively. RESULTS: The Cronbach's alpha for the GAIN, PAC and PES was 0.90, 0.94 and 0.68, respectively. The sum score of the PES showed a ceiling effect. Convergent validity was confirmed for all three instruments. The PES had the least missing data (mean number of missing items 0.2, SD 0.5) and was preferred by 40% of the caregivers, followed by the GAIN (mean number of missing items 0.6, SD 1.7, preferred by 11%). Positive caregiving experiences were negatively associated with educational level (range -0.28 to -0.35). Only the PES correlated positively with caregiver age (r = 0.25). CONCLUSIONS: All three questionnaires can be used to assess positive caregiving experiences, but the GAIN might be the most suitable questionnaire for caregivers of nursing home residents with dementia. Further research is necessary to examine generalizability of the findings. Geriatr Gerontol Int 2021; 21: 636-643.

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.

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Objectives To describe symptomatology, mortality and risk factors for mortality in a large group of Dutch nursing home (NH) residents with clinically-suspected COVID-19 who were tested with a Reverse Transcription Polymerase Chain Reaction (RT-PCR) test. Design Prospective cohort study. Setting and participants Residents of Dutch NHs with clinically-suspected COVID-19 and who received RT-PCR test. Methods We collected data of NH residents with clinically-suspected COVID-19, via electronic health records between March 18th and May 13th, 2020. Registration was performed on diagnostic status (confirmed (COVID-19+)/ruled out (COVID-19-)) and symptomatology (typical and atypical symptoms). Information on mortality and risk factors for mortality were extracted from usual care data. Results In our sample of residents with clinically-suspected COVID-19 (N=4007), COVID-19 was confirmed in 1538 residents (38%). Although, symptomatology overlapped between residents with COVID-19+ and COVID-19-, those with COVID-19+ were three times more likely to die within 30 days (hazard ratio (HR), 3·1; 95% CI, 2·7 to 3·6). Within this group, mortality was higher for men than for women (HR, 1·8; 95%, 1·5-2·2) and we observed a higher mortality for residents with dementia, reduced kidney function, and Parkinson’s Disease, even when corrected for age, gender, and comorbidities. Conclusions and implications About 40% of the residents with clinically-suspected COVID-19 actually had COVID-19, based on the RT-PCR test. Despite an overlap in symptomatology, mortality rate was three times higher for residents with COVID-19+. This emphasizes the importance of using low-threshold testing in NH residents which is an essential prerequisite to using limited personal protective equipment and isolation measures efficiently., Summary:Despite an overlap in symptoms, mortality rate was 3 times higher for residents with COVID-19 than for residents with a clinical suspicion of COVID-19. Risk factors for mortality were male, dementia, kidney function and Parkinson.

Although ageing research increasingly incorporates resilience, a common notion on what resilience means is lacking. We aimed to give a comprehensive overview of the conceptual literature on resilience in older persons, identifying areas of consensus and variation/debate. A systematic search of eight databases from different disciplines led to the inclusion of 36 texts. Across the conceptual literature of resilience in older persons, three common features of descriptions of resilience were identified: a stressor, a response and a mechanism. Based on differences in their interpretation of how resilience is expressed we distinguished two perspectives. The first, classical and most widely applied perspective, describes the expression of resilience as a positive response to a high intensity stressor. The second, newer perspective, describes resilience in the context of responses relative to equilibrium, following low intensity stressors. Almost all descriptions across the two perspectives describe the resilience mechanism to be dynamic and emphasize the importance of the context in achieving resilience. This review provides clarity on the current conceptual status of resilience in older persons, an important step towards a higher level of consistency in the future use of resilience in ageing.

OBJECTIVES: To estimate (1) the duration of no formal care, home care, and institutional care after dementia diagnosis, and (2) the effect of age, sex, living situation, dementia medication, migration background, and income on this dementia care duration.DESIGN: Longitudinal retrospective study using routinely recorded general practice electronic health records linked with population-based healthcare and mortality data.SETTING AND PARTICIPANTS: In total, 11,012 community-dwelling persons who received an incident dementia diagnosis and were listed in a Dutch general practitioner database from 448 general practices in the Netherlands.METHODS: Using multistate modeling analyses, we estimated the mean duration of care types (no/home/institutional care) for different ages based on simulations of transition rates and examined the influence of demographic and clinical factors on these durations.RESULTS: From dementia diagnosis onward in 85-year-old men, the mean duration without formal care was 0.7 years, of home care 1.7, and institutional care 1.1 years. In 85-year-old women, the duration without formal care was 0.8 years, of home care 2.3, and institutional care 2.3 years. Total care duration was 3.5 years in 85-year-old men and 5.4 years in 85-year-old women. In men, the duration of home care was longer compared with no formal care and institutional care. The duration of no formal care was longer in persons not living alone, without prescribed dementia medication, with a non‒Western migration background, or with a higher income. The duration of home or institutional care was longer in women, persons without polypharmacy, in those living alone, or those with a Western background.CONCLUSIONS AND IMPLICATIONS: Our findings help to increase understanding of long-term dementia care trajectories and show that demographic and clinical factors determine the duration of care types. Our results can contribute to the organization of healthcare resource planning and monitoring of the effects of healthcare policy and interventions.

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.

Quality of life of people with advanced dementia living in nursing homes is often suboptimal. Family caregivers can feel frustrated with limited contact with their relatives, which results in visits that are perceived as stressful and not very meaningful. Few psychosocial interventions are specifically developed for people with advanced dementia, and actively involve family caregivers or volunteers. Also, interventions usually stop when it becomes difficult for people to participate. The Namaste Care Family programme aims to increase the quality of life of people with advanced dementia, and improve family caregiving experiences through connecting to people and making them comfortable.Our study will evaluate the effects of the Namaste Care Family programme on quality of life of people with advanced dementia living in nursing homes and family caregiving experiences using a cluster-randomised controlled trial. Longitudinal analyses will be performed taking into account clustering at the nursing home level. Both a cost-effectiveness and a cost-utility analysis from a societal perspective will be performed. We will modify the Namaste Care Family programme to increase family and volunteer involvement in ongoing and end-of-life care. Data collection involves assessments by family caregivers, nursing staff and elderly care physicians using questionnaires, and observations by the researchers at baseline and multiple times over 12 months. The last questionnaire will be sent up to month 24 after the death of the person with dementia. During semistructured interviews, the feasibility, accessibility and sustainability of the Namaste Care Family programme will be assessed.The study protocol is approved by the Medical Ethics Review Committee of the VU University Medical Center in Amsterdam (protocol no. 2016.399) and registered with the Nederlands Trial Register (NTR5692). The findings will be disseminated via publications in peer-reviewed journals, conference presentations and presentations for healthcare professionals where appropriate.NTR5692.

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.

IntroductionQuality of life of people with advanced dementia living in nursing homes is often suboptimal. Family caregivers can feel frustrated with limited contact with their relatives, which results in visits that are perceived as stressful and not very meaningful. Few psychosocial interventions are specifically developed for people with advanced dementia, and actively involve family caregivers or volunteers. Also, interventions usually stop when it becomes difficult for people to participate. The Namaste Care Family programme aims to increase the quality of life of people with advanced dementia, and improve family caregiving experiences through connecting to people and making them comfortable.Methods and analysisOur study will evaluate the effects of the Namaste Care Family programme on quality of life of people with advanced dementia living in nursing homes and family caregiving experiences using a cluster-randomised controlled trial. Longitudinal analyses will be performed taking into account clustering at the nursing home level. Both a cost-effectiveness and a cost-utility analysis from a societal perspective will be performed. We will modify the Namaste Care Family programme to increase family and volunteer involvement in ongoing and end-of-life care. Data collection involves assessments by family caregivers, nursing staff and elderly care physicians using questionnaires, and observations by the researchers at baseline and multiple times over 12 months. The last questionnaire will be sent up to month 24 after the death of the person with dementia. During semistructured interviews, the feasibility, accessibility and sustainability of the Namaste Care Family programme will be assessed.Ethics and disseminationThe study protocol is approved by the Medical Ethics Review Committee of the VU University Medical Center in Amsterdam (protocol no. 2016.399) and registered with the Nederlands Trial Register (NTR5692). The findings will be disseminated via publications in peer-reviewed journals, conference presentations and presentations for healthcare professionals where appropriate.Trial registration numberNTR5692.

The future of primary care research (PCR) has recently undergone critical analyses from major thought leaders in the field, resulting in a mixed view of its prospects.1–3 In response, as members of the Oxford International Primary Care Research Leadership programme’s 2016–2018 cohort (http://www.oxfordleadershipprogramme.co.uk/), we provide our mid-career analysis of the future of the field, as well as making some recommendations for supporting a positive outlook.4 We are committed to the tenet that primary care is the foundation of efficient and high-quality health systems around the world. High-quality primary care is underpinned by high-quality research. We need research to evaluate policy, practice, service design, the role of health technology in care delivery, and innovative solutions to ever-pressing workforce issues. A strong pipeline of primary care researchers is required to deliver this agenda. In this piece, we briefly reflect on where we feel the key blockage in the pipeline is, the ‘mid-career primary care researcher’, and make recommendations on how we might ‘unblock’ it. Primary care encompasses a distinct and complex model of health care, with core values of first-contact, person-centred, comprehensive, and ongoing care that underpin how we design, deliver, and monitor care for most of our population here in the UK and in many other countries.4 In order to respond to the increasingly complex needs of patients (for example, ageing and multimorbidity), primary care researchers are challenged to pursue complex, innovative, and wide-reaching research agendas.5–8 The complexity of such concepts reflects the fact that a variety of researchers are typically engaged in these issues: clinicians, nurses, pharmacists, psychologists, sociologists, anthropologists, statisticians, health economists, and those who simply term themselves ‘health services researchers’. Indeed, we see the diversity of researchers routinely involved in PCR as another core strength, with multidisciplinary research teams working …

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.

People with advanced dementia often die in nursing homes. Family caregivers frequently feel that their loved one’s quality of life and dying is suboptimal. The daily Namaste Care Family program -derived from the US Namaste Care program- involves family caregivers and integrates personalized care with meaningful activities for people with advanced dementia. A cluster-randomized controlled trial (December 2016 - December 2018) examined effects of the Namaste Care Family program on resident and family caregiver outcomes. Ten Dutch nursing homes implemented Namaste Care Family for 117 residents, while nine nursing homes provided usual care for 114 residents in the study. Nursing staff assessed quality of life over the last week with the Quality of Life in Late-Stage Dementia (QUALID, the primary resident outcome measure). Research assistants observed discomfort during the sessions with the Discomfort Scale-Dementia of Alzheimer Type (DS-DAT). Assessments were at baseline and after 1, 3, 6, and 12 months. We found a significant difference in QUALID score at 12 months favoring quality of life in the intervention group. Further, the intervention group showed less signs of discomfort at 3, 6, and 12 months compared with the control group. The Namaste Care Family program can improve quality of life of people with advanced dementia in the long run. These study findings support sustained implementation of the daily program in nursing homes. Further analyses of effects on the other outcomes will include blinded DS-DAT assessments, more secondary outcome measures and family caregiver outcomes.

Background: the STOPP/START criteria are a promising framework to increase appropriate prescribing in the elderly in clinical practice. However, the current definitions of the STOPP/START criteria are rather non-specific, allowing undesirable variations in interpretation and thus application. The aim of this study was to design specifications of the STOPP/START criteria into international disease and medication codes to facilitate computerised extraction from medical records and databases. Methods: a three round consensus procedure with a multidisciplinary expert panel was organised to prepare, judge and agree on the design of the STOPP/START criteria specifications in corresponding international disease codes (ICD9 and ICPC) and medication codes (ATC). Results: after two rounds consensus was reached for 74% of the STOPP criteria and for 73% of the START criteria. After three rounds full consensus was reached resulting in a specification of 61 out of 62 STOPP criteria and 26 START criteria with their corresponding codes. One criterion could not be specified and for some criteria corresponding disease codes were lacking or imperfect. Conclusion: this study showed the necessity of a consensus procedure as even experts frequently differed on how to specify the STOPP/START criteria. This specification enables next steps such as prognostic validation of these criteria on adverse outcomes and studying the impact of improving appropriate prescribing in the elderly.

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.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.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).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.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.

ObjectivesThe 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.MethodsThe 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.ResultsInverse-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 (sic)/incremental unit of effect.ConclusionThis 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.

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.

Background: Although most depressed patients are treated in primary care, not all are recognized as such. This study explores the determinants of (non-)recognition of depression by general practitioners (GPs), with a focus on specific depression symptoms as possible determinants. Methods: Recognition of depression by GPs was investigated in 484 primary care participants of the Netherlands Study of Depression and Anxiety, with a DSM-IV diagnosis of depression in the past year. Recognition (yes/no) by GPs was based on medical file extractions (GP diagnosis of depressive symptoms/depressive disorder and/or use of antidepressants/referral to mental health care). Potential determinants of (non-)recognition (patient, depression, patient-GP interaction, and GP characteristics) were bivariately tested and variables with a p-value ≤ 0.2 entered into a multilevel multivariate model. Subgroup analysis was performed on 361 respondents with more reliable GP diagnosis data. Results: 60.5% of patients were recognized by their GP. Patients who did not consult their GP for mental problems, and without comorbid anxiety disorder(s) were less often recognized. In the subgroup, where 68.7% was recognized, in addition to these, decreasing number of symptoms of depression and increased appetite were associated with decreased recognition. No GP characteristics were retained in the final model. Limitations: Some data on recognition were collected retrospectively. Conclusions: In addition to patients without a comorbid anxiety disorder or who did not consult their GP for mental problems, GPs less often recognized patients with fewer depression symptoms or with increased appetite. Recognition may be improved by informing/teaching GPs that also increased appetite can be a symptom of depression. © 2012 Elsevier B.V. All rights reserved.

Background: Previous estimates of depression recognition in primary care are low and inconsistent. This may be due to registration artifacts and limited extraction efforts. This study investigated a) whether GPs' medical records demonstrate an accurate recognition of depression and b) which combinations of indications within the record most accurately reflect a diagnosis of depression.Methods: GPs' registrations were compared with a reference standard, the Composite International Diagnostic Interview (CIDI), according to DSM-IV criteria. Six definitions of GPs' recognition of depression were tested using diagnostic codes, medication data, referral data and free text in the medical records. The Youden-index was used to select the optimal definition of recognition. Data were derived from the Netherlands Study of Depression and Anxiety. 816 primary care patients from 33 general practitioners were included in the vicinities of Amsterdam and Leiden, The Netherlands.Results: Registration of antidepressant prescriptions was the best single indicator of GPs' recognition of CIDI depression with a recognition rate of 0.43. The best combination of indicators increased the recognition rate to 0.69. All indications except the specific diagnostic codes for 'depressive disorder' and 'depressive feelings' were included in this definition.Limitations: Potential bias due to the selection of participating GPs might have influenced our recognition rates.Conclusion: GPs are aware of mental health problems in most depressed patients, but labeling with specific diagnostic codes is weak. Researchers should consider that diagnostic coding alone is not an accurate measure of the diagnostic ability of depression and strongly underestimates the accuracy of the GP. (C) 2011 Elsevier B.V. All rights reserved.

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.

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. © 2013 Joling et al.; licensee BioMed Central 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.

BackgroundInterventions 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.MethodsA 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.ResultsDuring 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).ConclusionThis family meetings intervention for primary caregivers of patients with dementia did not postpone patient institutionalization more than usual care.Trial registrationCONTROLLED-TRIALS.COM ISRCTN90163486.

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. © 2010 American Association for Geriatric Psychiatry.

Background: Despite the high consistency of evidence in favor of person-centered care, little information is available on how person-centered and family-centered interventions are actually provided. The aim of this study is to gain insight into the provision of the effective New York University Caregiver Intervention (NYUCI) in order to enhance its implementation.Methods: This is a qualitative study using a grounded theory approach. Group interviews were carried out with three purposefully sampled counselors who had provided the NYUCI.Results: Six themes were identified: (1) family problems, (2) ways to deal with these family problems, (3) barriers encountered by counselors,(4) ways to deal with these barriers, (5) facilitators or rewards of being a counselor, and (6) perceived effectiveness.The problem categories were (a) conflicts within families; (b) past experiences and personality; and (c) daily living with dementia. Ways of helping caregivers deal with these problems included problem clarification from the perspectives of the key players. An important barrier was reluctance to be helped. This was dealt with by acknowledging caregivers’ need for control over situations. Additional effects of participation in the NYUCI observed by the counselors were reduction of anger and awareness of more and new options for dealing with dementia.Conclusions: Person- or family-centered care offers new perspectives on problems that are seemingly unmanageable. We hypothesize that seeing new and more options is a direct effect of this person-centered counseling. This might be an important outcome to be measured in future studies.