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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.

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.

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.

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).

Objectives Caring for people with Korsakoff syndrome (KS) residing in specialized long-term care facilities (LTCFs) can be distressing because of challenging neuropsychiatric symptoms (NPS). However, good-quality studies on NPS in this under-researched population are lacking. This study examined the prevalence and severity of NPS in people with KS living in specialized LTCFs and the associated caregiver distress. Design Cross-sectional, observational study. Data were obtained using structured interviews with care staff, elderly care physicians, and residents. Setting Nine specialized LTCFs in the Netherlands. Participants KS residents admitted for at least 3 months. Measurements The prevalence and severity of NPS were measured with the Neuropsychiatric Inventory–Questionnaire (NPI-Q). The associated caregiver distress was assessed with the NPI Distress Scale (NPI-D) according to the nurse or nurse assistant. Results Almost all of the 281 residents (96.4%) showed at least 1 NPS and 45.8% showed 5 or more symptoms. Irritability/lability (68.3%), agitation/aggression (58.7%), and disinhibition (52.7%) were most prevalent. Although the mean level of severity for all NPS was relatively low, half of the residents (49.1%) had at least 1 severe NPS. Care staff experienced low levels of distress associated with NPS. Conclusion NPS are highly prevalent in KS residents. Unexpectedly, these did not have any severe impact on residents and care staff. Acquiring more insight into the persistence and course of NPS, and its associations, among KS residents is important to better understand and reduce these symptoms and, ultimately, improve the quality of care for these residents.

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.

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.

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.

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

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.

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.

This study investigated the prevalence of depressive symptoms and diagnoses among older adults newly admitted to long-term care facilities (LTCFs) in Ontario, Canada. Using anonymous cross-sectional and longitudinal Minimum Data Set 2.0 (MDS 2.0) assessments (N = 63,095), changes in depressive symptoms and predictors of depression following admission to institutional care were examined. Depressive symptoms were present in 54.3 cases per 100 residents at initial assessment, increasing to 60.8 cases per 100 residents by follow-up. Although depressive symptoms worsened, approximately 30% of residents showed moderate to significant improvement following LTCF admission. Results are discussed in the context of the MDS 2.0 and interRAI Mood CAP as a resource for LTCF care staff.

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.

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.