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The aim of this study was to describe the course of psychotropic drug use in people with young-onset dementia and to explore possible associations with age, sex, dementia severity, dementia subtype and neuropsychiatric symptoms. Psychotropic drug use was studied in 198 community-dwelling persons participating in the Needs in Young-onset Dementia study. Data about psychotropic drug use were retrieved at baseline, as well as at 6, 12, 18 and 24 months and was classified into five groups (antiepileptics, antipsychotics, anxiolytics, hypnotics/sedatives and antidepressants) and quantified as 'present' or 'absent'. Generalized Estimating Equation modeling and chi-square tests were used to study associations between the determinants and psychotropic drug use. There was a statistically significant increase in the prevalence of psychotropic drug use from 52.3% to 62.6% during the course of the study. Almost three-quarters (72.4%) of the participants were treated with any psychotropic drug during the study, and more than one-third (37.4%) received psychotropic drugs continuously. Antipsychotics were used continuously in more than 10% of the participants and antidepressants in more than 25%. Increasing age was positively associated (p =.018) with psychotropic drug use at baseline, while apathy symptoms were negatively associated (p =.018). Despite the recommendations of various guidelines, the prolonged use of psychotropic drugs in community-dwelling people with young-onset dementia is high. Therefore, more attention is needed to timely evaluate psychotropic drug use and the introduction of self-management programs for caregivers should be encouraged to support caregivers in dealing with the neuropsychiatric symptoms caused by the dementia. [ABSTRACT FROM AUTHOR]

Objectives: Young onset dementia (YOD) often comes with neuropsychiatric symptoms (NPS) that are burdening for patients and caregivers and are predictors for institutionalization. The course of NPS in institutionalized patients with YOD is unknown. This study aims to fill this gap. Method: This study is part of the BEYOND-study, a descriptive longitudinal cohort study of institutionalized YOD patients. Eighty-nine patients were included in this two-year follow-up study, of which 50 completed the whole follow-up. Clinically relevant NPS were assessed using the Neuropsychiatric Inventory-Nursing Home version with a threshold of FxS ≥4. Mean scores and prevalence were calculated of all patients alive at the moment of a given assessment. Cumulative percentages were calculated in patients with complete follow-up. Results: 82–94% of the residents had at least one NPS at any of the five assessments. Over the two year course, 94% of the patients developed at least one new symptom of which 58% developed irritability, 52% agitation, 44% disinhibition and 44% eating change. All patients had any NPS during follow-up. Apathy had the highest overall prevalence rate and was the most persistent symptom over the two-year course, followed by eating changes, aberrant motor behaviour and irritability. The course during follow-up was variable for all NPS with no clear increase or decrease. Conclusion: The severity and prevalence of NPS in institutionalized YOD patients fluctuated during follow-up. Apathy and hyperactive symptoms were most severe and persistent. Future research should focus on the influence of psychotropic drug use and dementia subtype on the course of NPS. [ABSTRACT FROM AUTHOR]

Objective: Aging societies will bring an increase in the number of long-term care patients with mental-physical multimorbidity (MPM). This paper aimed to describe the natural course of neuropsychiatric symptoms (NPS) in patients with MPM in the first 8 months after admission to a geronto-psychiatric nursing home (GP-NH) unit. Methods: Longitudinal cohort study among 63 patients with MPM no dementia living in 17 GP-NH units across the Netherlands. Data collection consisted of chart review, semi-structured interviews, and brief neuropsychological testing, among which our primary outcome measure the Neuropsychiatric Inventory (NPI). Descriptive and bivariate analyses were conducted. Results: Our study showed a significant increase of the NPI total score (from 25.3 to 29.3, p = 0.045), and the total scores of a NPI hyperactivity cluster (from 9.7 to 11.8, p = 0.039), and a NPI mood/apathy cluster (from 7.7 to 10.1, p = 0.008). Just over 95% had any clinically relevant symptom at baseline and/or six months later, of which irritability was the most prevalent and persistent symptom and the symptom with the highest incidence. Hyperactivity was the most prevalent and persistent symptom cluster. Also, depression had a high persistence. Conclusions: Our results indicate the omnipresence of NPS of which most were found to be persistent. Therefore, we recommend to explore opportunities to reduce NPS in NH patients with MPM, such as creating a therapeutic milieu, educating the staff, and evaluating patient's psychotropic drug use. [ABSTRACT FROM AUTHOR]

Background: During the course of dementia, most people develop some type of neuropsychiatric symptoms (NPS), which result in lower quality of life, high caregiver burden, psychotropic drug use and a major risk of institutionalization. Studies on NPS in people with dementia have been mainly conducted in clinical centres or psychiatric services.Objectives: To investigate the course of NPS in people with dementia in primary care.Methods: Analysis of (cumulative) prevalence and incidence, persistence and resolution based on data collected during an assessment at home of a prospective naturalistic cohort study in primary care in a sample of 117 people with dementia and their informal caregivers. Subsyndromes of NPS were assessed with the Neuropsychiatric Inventory (NPI) and Cohen-Mansfield Agitation Inventory. Multivariate analyses were used to detect determinants for the course of NPS.Results: The mean age of the people with dementia was 78.6 years, and 52% were female. Mean Mini-Mental State Examination total score was 19.5, mean NPI total score 15.7. The most prevalent clinically relevant subsyndromes of the NPI were hyperactivity and mood/apathy, and the most prevalent individual NPS were aberrant motor behaviour (28%), agitation/aggression (24%) and apathy/indifference (22%). Of the people with dementia, 72.3% had one or more symptoms of the mood/apathy and 75.3% of the hyperactivity subsyndrome.Conclusions: GPs should be aware of NPS in people with dementia and should actively identify them when they visit these patients or when informal caregivers consult them. Timely diagnosing facilitates adequate professional care. [ABSTRACT FROM AUTHOR]

Background: Neuropsychiatric symptoms (NPS) frequently occur in community-dwelling patients with dementia and they are also frequently prescribed psychotropic drugs. The prescription of psychotropic drugs has been found to be associated with the level of NPS. Data on NPS in patients with dementia in general practices are scarce.Objectives: The aim of this study was to assess the prevalence rates of NPS and psychotropic drug use (PDU) in patients with dementia in general practices.Methods: We analyzed data from the baseline measurement of a prospective cohort study in a sample of (Dutch) patients in general practices. Prevalence rates of NPS and subsyndromes assessed with the Neuropsychiatric Inventory (NPI) and of PDU were calculated. Prevalence rates of individual NPS are presented both as clinically relevant symptoms (NPI symptom score ≥ 4) and as prevalence rates of symptoms with symptom score > 0.Results: Of the 117 patients, more than 90% had at least one symptom and more than 65% had at least one clinically relevant symptom. The most common NPS were agitation/aggression, dysphoria/depression and irritability/lability. The most common clinically relevant NPS were aberrant motor behaviour, agitation/aggression and apathy/indifference. Only 28.7% of the patients used at least one, 7.0% used at least two different and 1.7% used at least three different types of psychotropic drugs (excluding anti-dementia medication).Conclusions: NPS are highly prevalent in patients with dementia in general practices, but PDU is rather low. The most common clinically relevant NPS were aberrant motor behaviour, agitation/aggression and apathy/indifference. [ABSTRACT FROM AUTHOR]

Objective: Our aim was to describe physicians' perceptions of the suffering of their patients who are dying with dementia, many of whom are incompetent with regard to decision making and have difficulty with communicating about the source of their distress and with identifying related factors.Method: We analyzed data from the nationally representative observational Dutch End-of-Life in Dementia (DEOLD) cohort study (2007-2011), which involved 34 long-term care facilities. A total of 103 physicians completed questionnaires about 330 patients with dementia who had died in a participating facility. Suffering during the last six hours of life was defined as "a patient being disturbed by or aware of symptoms," "suffering until the end or death was a struggle"-all related to objective indicators of lack of comfort. We employed generalized estimating equation models to assess associations of suffering with the characteristics of physicians and patients, the patient's death, and the decision-making process.Results: In 13.8% of cases, the physician felt that the patient had suffered. An unexpected death and death with pneumonia were strongly (an odds ratios close to 6) associated with suffering, and suffering was also independently associated with the physician's perception of worse quality of end-of-life care, death with cardiovascular disease, a less experienced physician, no palliative sedation, and a younger patient.Significance Of Results: Most patients with dementia did not suffer during their final hours of life, according to their physicians. There are a number of factors associated with suffering, among them death with pneumonia and unexpected death. We may not be able to have much influence on death from pneumonia, but quality of care and an unexpected death are reasonable targets for intervention. Earlier identification of the beginning of the dying process would allow time to better prepare for approaching death, which would provide a source of comfort. [ABSTRACT FROM AUTHOR]

Background: Shared decision-making (SDM) is a means of allowing people with dementia to take part in making choices, be autonomous and participate in social activities. Involving them in SDM is an important way of promoting social health. However, including families and dementia residents in decision-making can be challenging for care staff working in nursing homes. The objective of this study was to identify barriers and facilitators regarding the implementation of an SDM framework for care planning in two nursing homes, one in Italy and one in the Netherlands. Methods: Focus group interviews were conducted with healthcare professionals who, after being trained, applied the SDM framework. Content analysis was used to analyze the data. Results: Six months after the feasibility trial, focus group interviews with healthcare professionals (n = 10 in Italy; n = 9 in the Netherlands) were held. We found 6 themes and 15 categories. Within these themes, facilitators and barriers were identified. The categories of team collaboration, communication skills and nursing home policy were found to be facilitators to the implementation process, whereas regulations, lack of funding and of involvement of family caregivers were the main barriers. Family attitudes towards SDM could be both. The main difference between countries concerned the residents' cognitive status that influenced their degree of involvement. Conclusion: Communication skills training for professionals, training of family caregivers, and involvement of the management in the implementation process seem to be crucial factors in successfully implementing SDM in nursing homes, and increasing the involvement of families and dementia residents in decision-making. [ABSTRACT FROM AUTHOR]

Background: Promoting adaptation, improving well-being and maintaining an optimal quality of life (QOL) is an important aspect in dementia care. The purpose of this study was to identify determinants of QOL in young onset dementia, and to assess differences in QoL domains between people with Alzheimer's disease (AD) and frontotemporal dementia (FTD). Methods: In total 135 persons with AD and 58 persons with FTD were included from two prospective cohort studies. QOL was assessed with the proxy reported quality of life in Alzheimer's disease questionnaire (QoL-AD). Possible determinants were explored using multiple linear regression and included sociodemographic variables, diagnosis, dementia severity, disease awareness, neuropsychiatric symptoms, met and unmet needs and hours of personal and instrumental care. Differences between QOL domains in people with AD and FTD were calculated using Mann-Whitney U tests. Results: Lower QOL was associated with more depressive symptoms, lower disease awareness, and a higher amount of needs, both met and unmet. People with AD scored lower on the memory and higher on the friends' subscale. No differences were found for the other items. Conclusion: This study demonstrates a unique set of determinants of QOL in AD and FTD. Interventions directed towards these specific factors may improve QOL. [ABSTRACT FROM AUTHOR]

Background: The course of psychological distress in informal caregivers of patients with dementia has been investigated in longitudinal studies with conflicting outcomes.Objectives: We investigated the course and determinants of psychological distress in informal caregivers of patients with dementia in primary care.Methods: In this prospective observational cohort study, data were collected at baseline, after 9 and 18 months. We assessed cognition and neuropsychiatric symptoms (NPS) of the patient (Mini-Mental State Examination and Neuropsychiatric Inventory) and psychological distress (Sense of Competence Questionnaire, Center for Epidemiological Studies Depression scale and General Health Questionnaire 12-tem version) of the informal caregivers. Determinants for the course of psychological distress were caregivers' age, gender and relationship with the patient, patients' cognition and NPS, participation in a care program and admission to long-term care facilities (LTCF). With linear mixed models, the course over time for psychological distress and its determinants were explored.Results: We included 117 informal caregivers, of whom 23.1% had a high risk for depression and 41.0% were identified to be likely to have mental problems at baseline. We found a stable pattern of psychological distress over time. Higher frequency of NPS, informal caregivers' age between 50 and 70 years and being female or spouse were associated with higher psychological distress. For patients who were admitted to a LTCF during the study psychological distress of the informal caregivers improved.Conclusions: GPs should focus on NPS in patients with dementia and on caregivers' psychological distress and be aware of their risk for depression and mental problems, specifically to those who are spouse, female or between 50 and 70 years of age. [ABSTRACT FROM AUTHOR]

Objectives:Geriatric patients’ physical disabilities, dependency on care, and possible psychological ill-being may negatively affect both the patient's quality of life and the informal caregiver burden. Focusing on this interrelationship which can be particularly prominent in geriatric patients with stroke, the objective of this study was to identify determinants of patients’ quality of life and informal caregiver burden. Method:This is a prospective, multicentre, cohort study. Data were collected in 84 geriatric home-dwelling patients with stroke three months after their rehabilitation period in skilled nursing facilities (SNFs). We assessed patients’ quality of life, depressive complaints, neuropsychiatric symptoms, balance, (instrumental) activities of daily living, and informal caregiver burden. Linear regression models were constructed to study the association between the variables. Results:For several domains, high quality of life of these geriatric patients was associated with high functional independence, less neuropsychiatric symptoms, and less depressive complaints. Informal caregiver burden was not associated with patients’ quality of life, but patients’ neuropsychiatric symptoms were a significant determinant of high informal caregiver burden. Conclusion:The presence of neuropsychiatric symptoms (more specifically depressive complaints) negatively affects the quality of life of geriatric patients. Their neuropsychiatric symptoms also affect caregiver burden. Health care professionals in SNFs can play an important role in providing the necessary psychosocial support and aftercare. [ABSTRACT FROM PUBLISHER]

Purpose To describe the concurrent incidence of pressure ulcers, urinary tract infections, and falls in hospitals and nursing homes, and the preventive care given. Additionally, the correlation between the occurrence of these adverse events and preventive care was explored. Design and Settings A prospective, 3-month, cohort study at 10 hospitals and 10 nursing homes in the Netherlands. Participants 687 hospital patients and 241 nursing home patients. Main Outcome Measures The incidence of three adverse events and preventive care given to patients at risk. During weekly visits, the patients and their files were assessed. Additionally, observations were performed. Results Seventy-seven hospital patients (11%) and 111 nursing home patients (46%) developed one or more adverse events. The incidence rate for both types of patients, and for the three adverse events combined, was 9% adverse events per patient week. In hospitals, 34% of the patients received adequate pressure ulcer preventive care, while 47% of the patients received adequate urinary tract infection preventive care, and none of the patients received adequate falls preventive care. In nursing homes, 18% of the patients received adequate pressure ulcer preventive care, 42% of the patients received adequate urinary tract infection preventive care, and less than 1% of the patients received adequate falls prevention care. Negative or no correlations were found between the incidence rates for the three adverse events. In nursing homes the incidence of pressure ulcers and preventive care were positively correlated. Conclusions There is a high incidence of adverse events in hospitals and nursing homes. Many patients at risk do not receive adequate preventive care. [ABSTRACT FROM AUTHOR]

Background/Aims: Knowledge about neuropsychiatric symptoms in young-onset Alzheimer's disease (YO-AD) is scarce, but essential to establish a prognosis and plan care for YO-AD patients. The aim of this study is to assess frequency parameters of neuropsychiatric symptoms in YO-AD over 2 years and investigate whether there are differences compared with late-onset Alzheimer's disease (LO-AD). Methods: 98 YO-AD and 123 LO-AD patients and caregivers from two prospective cohort studies were included and assessed every 6 months for 2 years, using the Neuropsychiatric Inventory to evaluate neuropsychiatric symptoms. Results: Over the course of 2 years, the incidence, prevalence and persistence of neuropsychiatric symptoms were in general lower in YO-AD than in LO-AD, specifically for delusions, agitation, depression, anxiety, apathy, irritability and aberrant motor behavior. Frequency of individual symptoms showed large variability in both groups. Within the group of YO-AD patients, apathy was the most prevalent symptom. Conclusion: Neuropsychiatric symptoms, notably apathy, should be paid appropriate attention to in the diagnosis and treatment of YO-AD patients. Further research is needed to gain insight into the mechanisms underlying the differences in neuropsychiatric symptoms between YO-AD and LO-AD. Copyright © 2012 S. Karger AG, Basel [ABSTRACT FROM AUTHOR]

Objective: to identify important demographic, clinical and functional determinants of successful discharge of geriatric patients from skilled nursing facilities (SNFs), particularly the role of multi-morbidity.Design: prospective cohort study with data collection at baseline and at discharge.Setting: fifteen SNFs in the Netherlands.Participants: of 378 eligible patients, 186 were included.Methods: multi-disciplinary teams recorded demographic and disease characteristics, as well as functional status, cognitive functioning and multi-morbidity on admission. The study outcomes were discharge to an independent living situation within 1 year of admission and functional status at discharge (Barthel index).Results: of the included 186 patients, 175 were followed up. Of these patients, 123 (70%) were successfully discharged. High Berg Balance Scale (BBS) and Star Cancellation test (SCT) scores independently contributed to 48% of the variance of functional status at discharge, while low age, high BBS and SCT scores were independently related to successful discharge, explaining 33% of the variance. Multi-morbidity was not an independent determinant of rehabilitation outcome.Conclusion: geriatric patients admitted for ‘low intensity’ rehabilitation in SNFs after stroke appeared to have a fair prognosis for being successfully discharged. Postural control was an important determinant of both outcome measures. [ABSTRACT FROM PUBLISHER]

To assess short- and long-term mortality and risk factors in nursing home patients with COVID-19 infection. Retrospective 2-center cohort study. Dutch nursing home patients with clinically suspected COVID-19 infection confirmed by reverse transcription-polymerase chain reaction testing. Data were gathered between March 2020 and November 2020 using electronic medical records, including demographic characteristics, comorbidities, medical management, and symptoms on the first day of suspected COVID-19 infection. Mortality at 30 days and 6 months was assessed using multivariate logistic regression models and Kaplan-Meier analysis. At 6 months, a subgroup analysis was performed to estimate the mortality risk between COVID-negative patients and patients who survived COVID-19. Risk factors for mortality were assessed through multivariate logistic regression models. A total of 321 patients with suspected COVID-19 infection were included, of whom 134 tested positive. Sixty-two patients in the positive group died at 30 days, with a short-term mortality rate of 2.9 (95% CI 1.7–5.3). Risk factors were fatigue (OR 2.6, 95% CI 1.3–6.2) and deoxygenation (OR 2.9, 95% CI 1.3–7.6). At 6 months, the mortality risk was 2.1 (95% CI 1.3–3.7). Risk factors for 6-month mortality were shortness of breath (OR 2.7, 95% CI 1.3–7.0), deoxygenation (OR 2.5, 95% CI 1.1–6.5) and medical management (OR 4.5, 95% CI 1.7–25.8). However, among patients who survived COVID-19 infection, the long-term mortality risk was not sustained (OR 1.0, 95% CI 0.4–2.7). Overall, COVID-19 infection increases short- and long-term mortality risk among nursing home patients. However, this study shows that surviving COVID-19 infection does not lead to increased mortality in the long term within this population. Therefore, advanced care planning should focus on quality of life among nursing home patients after COVID-19 infection. [ABSTRACT FROM AUTHOR]

Objective Aging societies will bring an increase in the number of long-term care residents with mental-physical multimorbidity. To optimize care for these residents, it is important to study their care needs, since unmet needs lower quality of life. To date, knowledge about care needs of residents with mental-physical multimorbidity is limited. The aim of this study was to explore (un)met care needs of residents with mental-physical multimorbidity and determinants of unmet needs. Methods Cross-sectional cohort study among 141 residents with mental-physical multimorbidity without dementia living in 17 geronto-psychiatric nursing home units across the Netherlands. Data collection consisted of chart review, semi-structured interviews, (brief) neuropsychological testing, and self-report questionnaires. The Camberwell Assessment of Need for the Elderly (CANE) was used to rate (un)met care needs from residents’ and nursing staff’s perceptions. Descriptive and multivariate regression analyses were conducted. Results Residents reported a mean number of 11.89 needs (SD 2.88) of which 24.2% (n = 2.88, SD 2.48) were unmet. Nursing staff indicated a mean number of 14.73 needs (SD 2.32) of which 10.8% (n = 1.59, SD 1.61) were unmet. According to the residents, most unmet needs were found in the social domain as opposed to the psychological domain as reported by the nursing staff. Different opinions between resident and nursing staff about unmet needs was most common in the areas accommodation, company, and daytime activities. Further, nearly half of the residents indicated ‘no need’ regarding behavior while the nursing staff supposed that the resident did require some kind of support. Depression, anxiety and less care dependency were the most important determinants of unmet needs. Conclusions Systematic assessment of care needs showed differences between the perspectives of resident and nursing staff. These should be the starting point of a dialogue between them about needs, wishes and expectations regarding care. This dialogue can subsequently lead to the most optimal individually tailored care plan. To achieve this, nurses with effective communication and negotiation skills, are indispensable. [ABSTRACT FROM AUTHOR]

Context: A gold standard or validated tool for monitoring the level of discomfort during continuous palliative sedation (CPS) is lacking. Therefore, little is known about the course of discomfort in sedated patients, the efficacy of CPS, and the determinants of discomfort during CPS.Objectives: To identify the course of discomfort in patients receiving CPS.Methods: A prospective observational multicenter study in nine hospices and palliative care units was performed. The Discomfort Scale-Dementia of Alzheimer Type (DS-DAT) was independently assessed for monitoring of patient discomfort during CPS. The DS-DAT scores range from 0 (no observed discomfort) to a maximum of 27 (high level of observed discomfort). Using a mixed model, the mean group score of discomfort between four predefined time frames of CPS was compared, correcting for confounding patient characteristics.Results: A total of 130 patients were sedated, and the DS-DAT was completed in 106 patients at least once. The median duration of the sedation in these 106 patients was 25.5 hours (range 2-161). The mean score of the DS-DAT in the phase before sedation was 12.16 (95% CI 9.83-14.50) and decreased significantly to 8.06 (95% CI 5.53-10.58) in the titration phase of sedation. The mean score of the DS-DAT in the final phase of sedation was 7.42 (95% CI 4.90-9.94).Conclusion: This study shows that CPS is associated with a decrease in the level of discomfort within an acceptable time frame, although in some sedated patients higher levels of discomfort in the last hours of life occurred. Although the DS-DAT seems to be of value for monitoring the level of discomfort during CPS, the results of this study should be interpreted within the constraints of the limitations, and further research on the psychometric properties of this tool is needed before the DS-DAT can be used in clinical practice. [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]

Context: Knowledge of determinants that are associated with the administration of continuous palliative sedation (CPS) helps physicians identify patients who are at risk of developing refractory symptoms, thereby enabling proactive care planning.Objectives: This study aims to explore which patient-related factors at admission are associated with receiving CPS later in the terminal phase of life.Methods: A prospective multicenter observational study was performed in six Dutch hospices and three nursing home-based palliative care units. The association between patient-related variables at admission (age, gender, diagnosis, use of opioids or psycholeptics, number of medications, Karnofsky Performance Status scale score, Edmonton Symptom Assessment System distress score, and Glasgow Coma Scale score) and the administration of CPS at the end of life was analyzed.Results: A total of 467 patients died during the study period, of whom 130 received CPS. In univariate analysis, statistically significant differences were noted between the sedated and nonsedated patients with respect to younger age (P = 0.009), malignancy as a diagnosis (P = 0.05), higher Karnofsky Performance Status score (P = 0.03), the use of opioids (P < 0.001), the use of psycholeptics (P = 0.003), and higher Edmonton Symptom Assessment System distress score (P = 0.05). Multivariate logistic regression analysis showed that only the use of opioids at admission (odds ratio 1.90; 95% confidence interval 1.18-3.05) was significantly associated with the administration of CPS.Conclusion: Physicians should be aware that patients who use opioids at admission have an increased risk for the administration of CPS at the end of life. In this group of patients, a comprehensive personalized care plan starting at admission is mandatory to try to prevent the development of refractory symptoms. Further research is recommended, to identify other determinants of the administration of CPS and to investigate which early interventions will be effective to prevent the need for CPS in patients at high risk. [ABSTRACT FROM AUTHOR]

Objectives With the lack of a cure for Alzheimer disease (AD), the identification of comorbidity is important to reduce the possibility of excess disability. Although comorbidity in patients with late-onset AD (LO-AD) is common, for people with young-onset AD (YO-AD), it is unclear how often comorbidity occurs. Furthermore, it is uncertain whether comorbidity in patients with YO-AD differs from that in patients with LO-AD. The aim of this study was to explore the prevalence, types of morbidity, and morbidity profiles in patients with YO-AD compared with those of patients with LO-AD. Design Explorative cohort study from 2 separate Dutch cohorts (Needs in Young-onset Dementia [NeedYD] and the Clinical Course of Cognition and Comorbidity–Dementia Study [4C-Dementia study]). Setting Participants were recruited in 2007 and 2008 from (1) the memory clinics of 3 Dutch Alzheimer centers, (2) the memory clinics of general hospitals, (3) mental health services in the southern part of the Netherlands, and (4) young-onset dementia specialized day care facilities. A comparison group of community-dwelling, elderly patients with AD was selected from the 4C-Dementia study. Patients in this study were recruited in 2010 and 2011 from the aforementioned Alzheimer centers. Measurements The prevalence rates of comorbidity were compared between 177 patients with YO-AD and 155 patients with LO-AD. Comorbidity was classified using the International Classification of Diseases, 10th Revision (ICD-10). The total amount of comorbidity was established by counting the number of existing diseases (ICD categories or chapters) and comorbidity was also dichotomized as present or absent. Furthermore, a hierarchical cluster analysis was performed to study clusters of comorbidity. Results Compared with LO-AD, patients with YO-AD showed less ( P < .001) overall comorbidity (58.2% vs 86.5%) and had lower prevalence rates of diabetes, obesity, and circulatory diseases; however, the prevalence rates of diseases of the nervous system in YO-AD (6.2%) were higher compared with those of patients with LO-AD (4.5%). The cluster analysis revealed a distinctive group of patients with YO-AD with either no comorbidity or with a disease of the nervous system. Endocrine, nutritional, and metabolic diseases and diseases of the circulatory system were present in 34% of the patients with YO-AD. Conclusion Comorbidity is less common in YO-AD than in LO-AD. However, general practitioners should be aware that approximately one-third of the patients with YO-AD suffer from or have endocrine, nutritional, and metabolic diseases and/or diseases of the circulatory system. Treatment should therefore not only focus on dementia but also on comorbidity. This attention may slow the functional decline in AD. These exploratory analyses suggested a higher prevalence of nervous system diseases in YO-AD compared with LO-AD. However, the finding did not reach statistical significance and in combination with the exploratory nature of the analyses justifies further investigation. If verified, this finding may help to decrease the time to diagnosis of AD and, subsequently, support in young patients with a neurological disease. Further investigation is needed to gain more insight into the association between comorbidity and AD in younger people. [ABSTRACT FROM AUTHOR]

Objectives To describe observations of suffering in patients with dementia from the diagnosis of pneumonia until cure or death. Design Prospective observational study between January 2012 and May 2014. Setting Dutch nursing homes (32). Participants Nursing home patients with dementia and pneumonia (n = 193). Measurements Independent observers performed observations of patients with dementia scheduled 13 times within the 15 days following diagnosis of pneumonia; twice daily in the first 2 days– to observe discomfort (Discomfort Scale–Dementia of Alzheimer Type; range 0–27), comfort (End Of Life in Dementia-Comfort Assessment in Dying; range 14–42), pain (Pain Assessment in Advanced Dementia; range 0–10), and dyspnea (Respiratory Distress Observation Scale; range 0–16). Results Observational data were obtained for 208 cases of pneumonia in 193 patients. In 71.2% of cases, patients received 1 or more treatments to relieve symptoms such as antipyretics, opioids, or oxygen; 89.4% received antibiotics. Discomfort was highest 1 day after diagnosis [mean Discomfort Scale-Dementia of Alzheimer Type score 8.1 (standard deviation, SD 5.8)], then declined, and stabilized around day 10 [mean 4.5 (SD 4.1)], or increased in the days preceding death. Observed pain and dyspnea followed a comparable pattern. Discomfort patterns did not differ much between cases treated with and without antibiotics. Conclusions Pneumonia in patients with dementia involved elevated levels of suffering during 10 days following diagnosis and in the days preceding death. Overall observed discomfort was low compared with prior Dutch studies, and the number of treatments to relieve symptoms was higher. Future studies should examine whether symptoms of pneumonia can be relieved even more, and what treatments are the most effective. [ABSTRACT FROM AUTHOR]

Abstract: Objective: To investigate the time from symptom onset to institutionalization in persons with young-onset dementia (YOD) and compare these findings with late-onset dementia (LOD), and to determine which factors predict institutionalization in persons with YOD compared with LOD. Design/Setting: Longitudinal study of community-dwelling patients with YOD and LOD and their caregivers. Participants: A total of 226 patients with YOD and 102 with LOD and their informal caregivers were recruited through memory clinics and health care facilities. Measurements: Cox proportional hazard models were used to relate covariates with time to institutionalization. The main outcome was time from symptom onset to institutionalization. Key predictors were cohort (YOD or LOD), neuropsychiatric symptoms, caregiver distress caused by neuropsychiatric symptoms, and caregivers’ sense of competence (Short Sense of Competence Questionnaire total score). Results: The time from symptom onset to institutionalization was nearly 9 years for patients with YOD compared with approximately 4 years for patients with LOD. In the YOD group, apathy significantly predicted time of institutionalization. Furthermore, the caregiver’s competence in caring for the person with dementia significantly predicted institutionalization in both groups. Conclusions: Patients with YOD are cared for at home for a longer period than patients with LOD. The results of this study underline the importance of a timely diagnosis for these patients and their families to facilitate the initiation of appropriate care and support. Support programs aimed at enhancing the caregivers’ sense of competence and ability to deal with neuropsychiatric symptoms, especially apathy, may postpone the institutionalization of the patient. [Copyright &y& Elsevier]

Abstract: Background: Patient care guidelines are usually implemented one at a time, yet patients are at risk for multiple, often preventable, adverse events simultaneously. Objective: This study aimed to test the effect of the SAFE or SORRY? programme on the incidence of three adverse events (pressure ulcers, urinary tract infections and falls). This paper describes Part I of the study: the effect on the incidence of adverse events. Design: A cluster randomised trial was conducted between September 2006 and November 2008. After a three-month baseline period the intervention was implemented followed by a nine-month follow-up period. Settings: Ten wards from four hospitals and ten wards from six nursing homes were stratified for institute and ward type and then randomised to intervention or usual care group. Participants: During baseline and follow-up, patients (≥18 years) with an expected length of stay of at least five days, were asked to participate. Methods: The SAFE or SORRY? programme consisted of the essential recommendations of guidelines for the three adverse events. A multifaceted implementation strategy was used for the implementation: education, patient involvement and feedback on process and outcome indicators. The usual care group continued care as usual. Data were collected on the incidence of adverse events and a Poisson regression model was used to estimate the rate ratio of the adverse events between the intervention and the usual care group at follow-up. Results: At follow-up, 2201 hospital patients with 3358 patient weeks and 392 nursing home patients with 5799 patient weeks were observed. Poisson regression analyses showed a rate ratio for the development of an adverse event in favour of the intervention group of 0.57 (95% CI: 0.34–0.95) and 0.67 (95% CI: 0.48–0.99) for hospital patients and nursing home patients respectively. Conclusion: This study showed that implementing multiple guidelines simultaneously is possible, which is promising. Patients in the intervention groups developed 43% and 33% fewer adverse events compared to the usual care groups in hospitals and nursing homes respectively. Even so, more research is necessary to underline these results. Trial registration: clinicaltrials.gov, number NCT00365430. [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]