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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]