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Objective: The effect of an intervention on neuropsychiatric symptoms (NPS), particularly agitation and aggression, and psychotropic drug use (PDU) in institutionalized people with young-onset dementia (YOD) was evaluated.Methods: A randomized controlled trial was conducted using a stepped wedge design. Thirteen YOD special care units were randomly assigned to three groups, which received the intervention at different time points. Four assessments took place every 6 months during a period of 18 months. Two hundred seventy-four people with YOD who resided in YOD special care units participated, of whom 131 took part in all assessments. The intervention consisted of an educational program combined with a care program, which structured the multidisciplinary process of managing NPS. The care program included the following five steps: evaluation of psychotropic drug prescription, detection, analysis, treatment, and evaluation of treatment of NPS. The Cohen-Mansfield Agitation Inventory and the Neuropsychiatric Inventory-Nursing Home version were used to assess NPS. Data on PDU were retrieved from residents' medical files. Multilevel models were used to evaluate the effect of the intervention, which accounted for clustering of measurements in clients within units.Results: No significant differences were found in agitation, aggression, other NPS, or PDU after crossing over to the intervention condition.Conclusion: We found no evidence that the intervention for management of NPS in nursing home residents with YOD was more effective in reducing agitation, aggression, other NPS, or PDU compared with care as usual. [ABSTRACT FROM AUTHOR]

Objective: To assess the course of quality of life (QoL) in nursing home residents with dementia and to study its predictors.Methods: This longitudinal, multicenter, observational cohort study with a 2-year follow-up looked at 290 residents with dementia, who lived in 14 dementia special care units in nine nursing homes in the Netherlands. QoL was assessed with the Qualidem, providing a total score and QoL profile with nine subscales. Residents were assessed at five assessments: every 6 months during 2 years. A linear mixed model was used for data analysis.Results: No change was found in the Qualidem total score (range: 0-111) over 2 years. However, a significant increase of QoL over time was seen in the subscales "Care relationship," "Negative affect," "Restless tense behavior," "Positive self-image," "Social isolation," and "Feeling at home." A significant decrease of QoL was seen in the subscales "Positive affect," "Social relations," and "Having something to do." Most predictors of the course of Qol were found for the subscales "Positive self-image" (sex, Global Deterioration Scale, Severe Impairment Battery, Activities of Daily Living, and Neuropsychiatric Inventory) and "Having something to do" (Global Deterioration Scale, Severe Impairment Battery, and Activities of Daily Living). Sex and Neuropsychiatric Inventory at baseline were the predictors found most frequently.Conclusion: The total QoL score was stable over a 2-year period. However, QoL subscales showed multidirectional changes. The largest QoL decline in the subscale "Having something to do" suggests that more attention should be given to useful activities in nursing home care. [ABSTRACT FROM AUTHOR]

Objective: Although many nursing home residents with dementia show agitation, hardly any literature is published about very frequent agitation. The WAALBED-III study focuses on the 2-week prevalence and correlates of very frequent agitation in these residents.Design: Cross-sectional study using combined data of four studies.Setting: One hundred nineteen dementia special care units in twenty-six nursing homes in The Netherlands.Participants: Two thousand seventy-four residents with dementia.Measurements: We operationally defined very frequent agitation as having a score of 6 (several times a day) or 7 (several times an hour) on at least five items of the Cohen Mansfield Agitation Inventory (CMAI) combined with a CMAI total score above the 90th percentile. To assess the association of demographic and behavioral characteristics with very frequent agitation, we performed a multivariate multilevel logistic regression analysis.Results: The 2-week prevalence of very frequent agitation was 7.4% (95% CI: 6.374-8.634). Correlates for very frequent agitation were age (OR: 0.967, 95% CI: 0.942-0.992), dementia severity (GDS 6 = OR: 3.636, 95% CI: 1.929-6.875; GDS 7 = OR: 2.951, 95% CI: 1.321-6.588), delusions (OR: 2.480, 95% CI: 1.555-3.956), anxiety (OR: 1.904, 95% CI: 1.259-2.881), euphoria (OR: 3.712, 95% CI: 2.171-6.337) and irritability (OR: 4.411, 95% CI: 2.854-6.816).Conclusions: To our knowledge, this study is the first to report prevalence data and correlates about nursing home residents with very frequent agitation. We found several correlated factors for very frequent agitation. Still, further research is needed for a better understanding of the behavior of this group, and to identify good treatment options. [ABSTRACT FROM AUTHOR]

Objective: To 1) compare the accuracy of the Montgomery-Asberg Depression Rating Scale (MADRS) and the Cornell Scale for Depression in Dementia (CSDD) in nursing home residents with dementia when professional caregivers are the only available source of information and 2) explore different methods to account for missing items. Design: Cross-sectional design. Setting: Nursing home (NH). Participants: One hundred one residents with dementia. Measurements: NH residents with dementia were assessed on the presence of clinical depression using Provisional Diagnostic Criteria for Depression of Alzheimer's Disease. The MADRS and CSDD were administered in a structured interview with professional primary caregivers. Results: Receiver operating characteristic" analyses revealed no significant differences between areas under the empirical curve for MADRS and CSDD. Imputation of a lowest possible item score for missing items revealed larger areas than three other methods (significant result only for CSDD). A MADRS cutoff score of "> 13" yielded the highest sum of sensitivity (78%) and specificity (66%). A CSDD cutoff score of ">6" yielded the highest sum of sensitivity (94%) and specificity (49%). Both scales showed high negative predictive values up to 100% and low positive predictive values not exceeding 50%. Conclusion: The proxy-based MADRS and CSDD did not differ in distinguishing depressed from nondepressed NH residents and may be used for screening purposes. For missing items, imputation of a lowest possib le item score may be applied. The MADRS and CSDD may be better used for ruling out rather than for ruling in depression. [ABSTRACT FROM AUTHOR]

Objective: To determine the course of neuropsychiatric symptoms (NPSs) in nursing home residents with dementia and to determine their variability across diagnosis. Design: Prospective cohort study over 2 years. Setting: Fourteen dementia special care units in nine nursing homes in The Netherlands. Participants: One hundred seventeen residents with dementia. Measurements: NPSs were measured using the Neuropsychiatric Inventory-Nursing Home version (NPI-NH). Results: The majority of residents had moderately severe to severe dementia. All but a few residents (97%) showed any NPS, and co-occurrence of NPSs was high. Agitation, irritability, and aberrant motor behavior were the most prevalent over the 2 years. Depression and anxiety as well as NPI total score decreased over time, whereas apathy tended to increase. Agitation and aberrant motor behavior were the most persistent symptoms. In asymptomatic residents, highest incidence rates were found for apathy, aggression/agitation, irritability, and aberrant motor behavior. Anxiety and apathy were more prevalent in Alzheimer disease (AD) compared with vascular disease (VaD); vice versa, aggression and depression were more prevalent in VaD. Differences in change over time between AD and VaD were found for irritability and disinhibition. Conclusion: This is the first study examining the 2-year course of NPSs in a large group of nursing home residents with dementia. Virtually all residents demonstrated and/or developed NPSs. Although affective symptoms decreased, apathy tended to increase. Agitated behaviors were particularly persistent. Our data may contribute to improve mental healthcare for demented nursing home residents. [ABSTRACT FROM AUTHOR]

Establishing the prevalence and determinants of neuropsychiatric symptoms (NPS) in patients with acquired brain injury (ABI) in nursing homes. Cross-sectional, observational study. Patients 18-65 years old with ABI in special care units in Dutch nursing homes. Nursing homes were recruited through the national expertise network for patients with severe ABI, regional brain injury teams, and by searching the Internet. Patient characteristics were collected through digital questionnaires. NPS were assessed with the Neuropsychiatric Inventory-Nursing Home version (NPI-NH) and the Cohen-Mansfield Agitation Inventory (CMAI), cognition with the Mini-Mental State Examination, and activities of daily living with the Disability Rating Scale. Psychotropic drug use (PDU) was retrieved from the electronic prescription system. Individual NPS were clustered. Associations between determinants and NPS were examined using multilevel multivariate linear regression models. In a population of 118 patients from 12 nursing homes, 73.7% had 1 or more clinically relevant NPS and 81.3% 1 or more agitated behaviors. The most common NPS were agitation, in particular aberrant motor behavior (24.6%), repetitious sentences/questions (35.5%), and constant requests for attention (34.6%), verbal (33.6%) and physical (50.5%) aggression, and irritability (28.0%). Male patients were more likely to display hyperactivity. Being married was associated with less verbally agitated behavior and pain was associated with a higher CMAI total score. PDU increased the likelihood of a higher NPI-NH total score. NPS are common in patients with ABI ≤65 years of age residing in nursing homes. This is a first step to fill in the knowledge gap concerning NPS in this population. An increasing number of patients with severe ABI may survive the acute phase and will reside many years in nursing homes. It is important to shed more light on these NPS, with regard to course, magnitude, and severity, to ultimately develop appropriate care for this vulnerable group of patients. [ABSTRACT FROM AUTHOR]

Neuropsychiatric symptoms are common in nursing home residents with young-onset dementia and burdensome for nursing staff. It is known that neuropsychiatric symptoms are associated with burn-out complaints and low job satisfaction. An intervention aimed at decreasing neuropsychiatric symptoms in nursing home residents with young-onset dementia might also result in less burnout complaints and job demands and improve job satisfaction in nursing staff. The aim was to evaluate the effect of the intervention on nursing staff burnout, job satisfaction and job demands. Cluster randomised controlled trial using a stepped wedge design with a total duration of 18 months, with four assessments. Thirteen young-onset dementia special care units across the Netherlands were, by means of random allocation software, assigned to three groups crossing over at different time points. All nursing staff, in total 391, were invited to participate. 305 nursing staff participated during the course of the study of whom 71 participated in all assessments. An educational program followed by a structured multidisciplinary care program aimed at the management of neuropsychiatric symptoms. The care program consists of evaluation of psychotropic drug prescription followed by detection, analysis, treatment and evaluation of treatment of neuropsychiatric symptoms. Emotional exhaustion, depersonalisation and personal accomplishment were assessed with the Utrecht Burnout Scale. Job satisfaction and job demands were assessed with subscales of the Leiden Quality of Work Questionnaire. The baseline burnout risk on emotional exhaustion and personal accomplishment was average, and low on depersonalisation. The mean scores for job satisfaction were above average and for job demands average. Linear mixed models showed that the intervention had no effect on emotional exhaustion (estimated effect −0.04, 95% confidence interval −1.25 to 1.16), depersonalisation (estimated effect 0.24, 95% confidence interval −0.26 to 0.74), personal accomplishment (estimated effect −0.82, 95% confidence interval −1.86 to 0.22) job satisfaction (estimated effect −0.40, 95% confidence interval −0.98 to 0.17) and job demands (estimated effect −0.04, 95% confidence interval −0.57 to 0.49). A significant difference was found between registered nurses and other nursing staff on emotional exhaustion and job satisfaction. Compared to other staff members, registered nurses' emotional exhaustion scores slightly increased while job satisfaction slightly decreased when using the intervention. The intervention was not effective on three dimensions of burnout, job satisfaction and job demands. Staff scored positive on the outcomes of interest before implementation of the intervention, leaving little opportunity for improvement. [ABSTRACT FROM AUTHOR]

Objectives A process evaluation was performed for an intervention aimed at improvement of the management of neuropsychiatric symptoms in young-onset dementia. Data about sample quality and intervention quality was evaluated to better understand internal and external validity. In addition, data about the implementation strategy and factors affecting implementation were evaluated to improve further implementation of the intervention. Design A model proposed by Leontjevas and colleagues consisting of first-order (validity) and second-order (implementation) data was used. Setting and Participants Care units delivering specialized treatment and support for residents with young-onset dementia. Measures A description of the recruitment, randomization procedure, and intervention reach was carried out to determine sample quality. To determine intervention quality, data on satisfaction, relevance, feasibility, and fidelity were collected through a questionnaire and reports logged on the server of the web-based intervention. A description of the implementation strategy was provided. Barriers and facilitators for implementation were collected by a questionnaire and analyzed by deductive content analysis. Results Care units varied in size and were recruited from different geographical regions in the Netherlands. The informed consent rate of the residents was 87.7%. The majority of the nursing home staff were satisfied with the intervention. However, parts of the intervention were perceived as less relevant for their own organization. The feasibility of the intervention was considered low. The fidelity differed between care units. The implementation strategy did not overcome all barriers. Factors affecting implementation covered 3 themes: organizational aspects, culture of the organization, and aspects of the intervention. Conclusions In general, our results showed sufficient internal and external validity, warranting further effect analyses. Adaptations to specific steps of the care program should be considered to increase feasibility and sustainability. In addition, integration of the care program into the electronic health records is expected to further improve implementation. [ABSTRACT FROM AUTHOR]

Objective Young-onset dementia (YOD) is defined as dementia that develops before the age of 65. Neuropsychiatric symptoms (NPS) have important clinical consequences for patients and their family members. To date, knowledge about the prevalence and correlates of NPS in YOD is limited, but essential to establish specific tailored care for patients with YOD. The aim of this study was to explore the prevalence and correlates of NPS in nursing home residents with YOD. Design/Setting Cross-sectional cohort study in Dutch long-term care facilities providing specialized care for YOD. Participants Participants included 230 institutionalized patients with YOD. Measurements NPS were assessed using the Cohen-Mansfield Agitation Inventory (CMAI) and the Neuropsychiatric Inventory-Nursing Home version (NPI-NH). The influence of gender, dementia severity, type of dementia, and disease awareness on clusters of relevant NPS was investigated using multivariate logistic regression analysis and subsequently corrected for the possible confounders of age, duration of institutionalization, and psychoactive medication use. Results Ninety percent of the nursing home residents with YOD showed 1 or more neuropsychiatric symptoms, 88% showed significant agitation, and 56% showed relevant apathy. No gender differences were found. Although physically aggressive behavior, non–physically aggressive behavior, and apathy were more common in patients with (very) severe cognitive decline (Global Deterioration Scale [GDS] stage 6–7), verbally agitated behavior was common in patients in all except the most severe stages of dementia (GDS 2–6). Apathy was more prevalent in alcohol-related dementia. Low levels of awareness were associated with more physically aggressive behavior and aberrant motor behavior. Conclusion The prevalence of NPS was high and was associated with the severity and type of dementia and disease awareness. Agitation and apathy are the most important symptoms to focus on in YOD. The high prevalence of NPS supports the idea of care delivery in special care units. Further research is needed on potentially influencing environmental correlates of NPS in YOD. [ABSTRACT FROM AUTHOR]

Abstract: Background: A multidisciplinary, evidence-based care program to improve the management of depression in nursing home residents was implemented and tested using a stepped-wedge design in 23 nursing homes (NHs): “Act in case of Depression” (AiD). Objective: Before effect analyses, to evaluate AiD process data on sampling quality (recruitment and randomization, reach) and intervention quality (relevance and feasibility, extent to which AiD was performed), which can be used for understanding internal and external validity. In this article, a model is presented that divides process evaluation data into first- and second-order process data. Methods: Qualitative and quantitative data based on personal files of residents, interviews of nursing home professionals, and a research database were analyzed according to the following process evaluation components: sampling quality and intervention quality. Setting: Nursing home. Results: The pattern of residents’ informed consent rates differed for dementia special care units and somatic units during the study. The nursing home staff was satisfied with the AiD program and reported that the program was feasible and relevant. With the exception of the first screening step (nursing staff members using a short observer-based depression scale), AiD components were not performed fully by NH staff as prescribed in the AiD protocol. Conclusion: Although NH staff found the program relevant and feasible and was satisfied with the program content, individual AiD components may have different feasibility. The results on sampling quality implied that statistical analyses of AiD effectiveness should account for the type of unit, whereas the findings on intervention quality implied that, next to the type of unit, analyses should account for the extent to which individual AiD program components were performed. In general, our first-order process data evaluation confirmed internal and external validity of the AiD trial, and this evaluation enabled further statistical fine tuning. The importance of evaluating the first-order process data before executing statistical effect analyses is thus underlined. [Copyright &y& Elsevier]

Challenging behavior is prevalent in people with dementia residing in nursing homes and places a high burden on the nursing staff of dementia special care units. This study evaluates an educational program for nursing staff for managing challenging behavior: The Educating Nursing Staff Effectively (TENSE) program. This program can be tailored to care organizations' wishes and needs and combines various learning styles. The aim of this cluster-randomized controlled trial was to examine the short-term (3 months) and long-term (9 months) effects of the TENSE training program on experienced stress, work contentment, and stress reactions at work in nursing staff working in dementia special care units. Cluster-randomized controlled trial. Nursing staff members of 18 dementia special care units within nine nursing homes from different Netherlands regions were randomized into an intervention (n = 168) or control (n = 129) group. The TENSE program consisted of a three-day training course and two follow-up sessions after three and six months, respectively. The primary outcome was stress experienced by nursing staff measured with the Utrecht Burnout Scale - C. Secondary outcomes were work contentment and stress reactions at work. Furthermore, process evaluation data on the reach of and compliance with the program and the program's feasibility and relevance were collected. Data were collected between November 2012 and November 2014. In general, the participants appreciated the quality and relevance of the TENSE training and evaluated the content of the training as beneficial. The TENSE training had no effect on the components of experienced stress, i.e., emotional exhaustion (p = 0.751), depersonalization (p = 0.701), and personal accomplishment (p = 0.182). Furthermore, no statistically significant effects of the intervention on work contentment and stress reactions at work were found. The TENSE training program did not have an effect on experienced stress, work contentment, nor stress reactions at work of nursing staff working in dementia special care units. In future studies, more focus on practicing new skills seems needed. Trial registration: NTR (Dutch Trial Registration) number NTR3620 [ABSTRACT FROM AUTHOR]

To explore the course of quality of life (QoL) and possible resident-related predictors associated with this course in institutionalized people with young-onset dementia (YOD). An observational longitudinal study. A total of 278 residents with YOD were recruited from 13 YOD special care units in the Netherlands. Secondary analyses were conducted with longitudinal data from the Behavior and Evolution in Young-ONset Dementia (BEYOND)-II study. QoL was assessed with proxy ratings, using the Quality of Life in Dementia (QUALIDEM) questionnaire at 4 assessment points over 18 months. Predictors included age, gender, dementia subtype, length of stay, dementia severity, neuropsychiatric symptoms, and psychotropic drug use at baseline. Multilevel modeling was used to adjust for the correlation of measurements within residents and clustering of residents within nursing homes. The total QUALIDEM score (range: 0-111) decreased over 18 months with a small change of 0.65 (95% confidence interval −1.27, −0.04) points per 6 months. An increase in several domains of QoL regarding care relationship, positive self-image, and feeling at home was seen over time, whereas a decline was observed in the subscales positive affect, social relations, and having something to do. Residents with higher levels of QoL and more advanced dementia at baseline showed a more progressive decline in QoL over time. Sensitivity analyses indicated a more progressive decline in QoL for residents who died during the follow-up. This study shows that although overall QoL in nursing home residents with YOD was relatively stable over 18 months, there were multidirectional changes in the QoL subscales that could be clinically relevant. Higher levels of QoL and more advanced stages of dementia at baseline predicted a more progressive decline in QoL over time. More longitudinal studies are needed to verify factors influencing QoL in YOD. [ABSTRACT FROM AUTHOR]

Extreme neuropsychiatric symptoms can be a heavy burden for nursing home (NH) residents, relatives, and caregivers. Sometimes, when extreme neuropsychiatric symptoms are considered refractory, continuous palliative sedation is administered. The aim of this study was to explore the trajectory leading to continuous palliative sedation and its administration in NH residents with dementia and refractory neuropsychiatric symptoms. A qualitative interview and explorative study was performed. Relatives, elderly care physicians, and other staff members involved with 3 NH residents with dementia and extreme refractory neuropsychiatric symptoms who received continuous palliative sedation were interviewed. These NH residents lived on dementia special care units of 3 NHs in the Netherlands. Consecutive sampling was used to select participants. Medical files were studied. Semistructured interviews were conducted. Transcriptions were analyzed with thematic analysis, including directed content analysis. Nine in-depth interviews with 13 participants were held. Analysis resulted in 6 main themes, with several subthemes reflecting phases of the continuous palliative sedation trajectory: (1) run-up, describing an unbearable struggle of the resident; (2) turning point, at which hope was lost; (3) considering continuous palliative sedation and administration of intermittent sedation; (4) decision to start continuous palliative sedation based on 1 decisive trigger; (5) administration of continuous palliative sedation with stakeholders experiencing relief; and (6) evaluation. The trajectory leading up to continuous palliative sedation in NH residents with dementia and extreme refractory neuropsychiatric symptoms was complex and burdensome, but the initiation led to relief and contentment for all those involved. This study highlights that continuous palliative sedation can be a valuable treatment option among these residents. A recommendation is to include external consultation in the decision process and to administer intermittent sedation as a preceding step when continuous palliative sedation is considered. [ABSTRACT FROM AUTHOR]

Abstract: Objective: To compare the Neuropsychiatric Inventory apathy subscale (NPIa) with the abbreviated Apathy Evaluation Scale (AES-10) on discriminant validity and on their performance to distinguish residents as apathetic or nonapathetic. Design: Cross-sectional design. Setting: Nursing home. Participants: 100 residents of 4 dementia special care units (n = 58) and 3 somatic units (n = 42). Measurements: Primary professional caregivers were interviewed to score the AES-10 and NPIa. The elderly care physician and the psychologist of each unit examined residents for clinical apathy using diagnostic criteria. Results: The AES-10 and NPIa correlated moderately with each other (rs  = 0.62, P < .0001). The AES-10 correlated weakly (rs  = 0.27, P = .024) and the NPIa moderately (rs  = 0.46, P = .001) with the Cornell Scale for Depression in Dementia. Receiver operating characteristic analysis showed an area under the curve (AUC) of 0.72 (P < .01) for AES-10 and 0.67 (P < .05) for NPIa. The AES-10 produced higher sums of sensitivity and negative predictive value than the NPIa. Explorative analyses revealed that both instruments produced higher scores in dementia independently of having an apathy diagnosis, whereas AUCs were significant in nondementia (AES-10: AUC = 0.88, P < .001; NPIa: AUC = 0.77, P = .023), but not in dementia. Conclusion: Both the AES-10 and NPIa may be used to distinguish apathetic from nonapathetic residents in a heterogeneous sample with and without dementia, or in residents without dementia. The AES-10 may be preferable to the NPIa apathy subscale when ruling out or screening for apathy. The performance of the scales against diagnostic criteria of apathy in dementia need to be further examined. [Copyright &y& Elsevier]