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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]

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]

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]

There is much ambiguity regarding the term “nursing home” in the international literature. The definition of a nursing home and the type of assistance provided in a nursing home is quite varied by country. The International Association of Gerontology and Geriatrics and AMDA foundation developed a survey to assist with an international consensus on the definition of “nursing home.” [ABSTRACT FROM AUTHOR]

Objectives The objective of this study is to explore factors that elucidate reasons for psychotropic drug (PD) prescription for neuropsychiatric symptoms (NPS) in nursing home (NH) residents with dementia. Design A qualitative study using a grounded theory approach. Setting Twelve NHs in The Netherlands. Participants Fifteen physicians and 14 nurses. Measurements Individual, face-to-face, in-depth semistructured interviews. Interviews were audio recorded, transcribed, and qualitatively analyzed using Atlas.ti. Results The qualitative analysis revealed 4 emerging themes with factors either or both enhancing or limiting PD prescription, which we used to develop a conceptual framework. First, the mindset of physicians and nurses toward NPS and PDs appeared to contribute. Second, inadequate knowledge of and experience with NPS and limited people skills of nurses may induce PD prescription. Also, knowledge of effectiveness and side effects of PDs from education, literature, and guidelines, and previous personal experiences was considered relevant. Third, effective communication and cooperation between professionals and with family may improve the appropriateness of PD prescription. Fourth, external factors including staffing issues, nursing home setting, access to consultants, national and local policies, and zeitgeist were considered to affect PD prescription. Conclusion We have developed a conceptual framework explaining how different factors influence PD prescription. This provides opportunities for improving PD prescription in NH residents with dementia. [ABSTRACT FROM AUTHOR]

Introduction Parkinson's disease (PD) is a complex and disabling disorder. Ultimately, 20% to 40% of patients are admitted to a nursing home, and neurologists often lose track of these patients. Care and treatment of these institutionalized patients have not been addressed comprehensively, but anecdotal reports suggest it is suboptimal. We conducted a qualitative study to analyze the quality of PD care in Dutch nursing homes from the perspective of residents, caregivers, and health care workers. Methods Experiences and (unmet) needs of 15 nursing home residents with PD and parkinsonism (90% Hoehn and Yahr stage 4 and 5) and 15 informal caregivers were assessed using semistructured interviews. Furthermore, 5 focus group discussions were organized with 13 nurses and 22 other health care professionals to explore the experiences and barriers of PD care. Results Three core unmet needs were identified: (1) unsatisfactory empathy and emotional support, according to residents and informal caregivers; (2) insufficient staff knowledge on PD-related issues, such as motor fluctuations, leading to poorly timed administration of levodopa; (3) suboptimal organization of care with limited access to neurologists and specialized PD nurses. Conclusions PD care in Dutch nursing homes is suboptimal according to residents, informal caregivers, and health care workers. Three core areas for improvement were identified, including greater attention for psychosocial problems, improved PD-specific knowledge among nursing home staff, and better collaboration with hospital staff trained in movement disorders. [ABSTRACT FROM AUTHOR]

Abstract: This article reports the findings of a policy survey designed to establish research priorities to inform future research strategy and advance nursing home practice. The survey was administered in 2 rounds during 2013, and involved a combination of open questions and ranking exercises to move toward consensus on the research priorities. A key finding was the prioritization of research to underpin the care of people with cognitive impairment/dementia and of the management of the behavioral and psychological symptoms of dementia within the nursing home. Other important areas were end-of-life care, nutrition, polypharmacy, and developing new approaches to putting evidence-based practices into routine practice in nursing homes. It explores possible innovative educational approaches, reasons why best practices are difficult to implement, and challenges faced in developing high-quality nursing home research. [Copyright &y& Elsevier]

Abstract: Parkinson disease (PD) is common in long term care (LTC) facilities. The number of institutionalized patients with PD will rise sharply in the coming decades because of 2 concurrent phenomena: aging of the population leads to an increased PD prevalence and improved quality of care has led to a prolonged survival in advanced disease stages. Only a few studies have investigated the prevalence and clinical characteristics of patients with PD in LTC facilities. Even fewer studies have addressed the treatment strategies used to support these institutionalized patients, who are mostly in advanced stages of the disease. The available evidence suggests that current management of patients with PD in LTC facilities is less than optimal. In the Netherlands, and we suspect in many other countries, there are no formal guidelines for treating patients with PD who have been admitted to a LTC facility. In this review, we describe the epidemiology, clinical characteristics, and clinical management of patients with PD in LTC settings. We also address potentially modifiable elements of care and provide several recommendations to improve the management of PD in these facilities. We conclude by suggesting a possible guide for future research in this area. [Copyright &y& Elsevier]

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: 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]

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]

Abstract: Background: Patients in hospitals and nursing homes are at risk for the development of often preventable adverse events. Guidelines for the prevention of many types of adverse events are available, however compliance with these guidelines appears to be lacking. As a result many patients do not receive appropriate care. We developed a patient safety program that allows organisations to implement multiple guidelines simultaneously and therefore facilitates guideline use to improve patient safety. This program was developed for three frequently occurring nursing care related adverse events: pressure ulcers, urinary tract infections and falls. For the implementation of this program we developed educational activities for nurses as a main implementation strategy. Objectives: The aim of this study is to describe the effect of interactive and tailored education on the knowledge levels of nurses. Design: A cluster randomised trial was conducted between September 2006 and July 2008. Settings: Ten hospital wards and ten nursing home wards participated in this study. Prior to baseline, randomisation of the wards to an intervention or control group was stratified for centre and type of ward. Participants: All nurses from participating wards. Methods: A knowledge test measured nurses’ knowledge on the prevention of pressure ulcers, urinary tract infections and falls, during baseline en follow-up. The results were analysed for hospitals and nursing homes separately. Results: After correction for baseline, the mean difference between the intervention and the control group on hospital nurses’ knowledge on the prevention of the three adverse events was 0.19 points on a zero to ten scale (95% CI: −0.03 to 0.42), in favour of the intervention group. There was a statistically significant effect on knowledge of pressure ulcers, with an improved mean mark of 0.45 points (95% CI: 0.10–0.81). For the other two topics there was no statistically significant effect. Nursing home nurses’ knowledge did neither improve (0 points, CI: −0.35 to 0.35) overall, nor for the separate subjects. Conclusion: The educational intervention improved hospital nurses’ knowledge on the prevention of pressure ulcers only. More research on long term improvement of knowledge is needed. Trial registration: ClinicalTrials.gov ID [NCT00365430]. [Copyright &y& Elsevier]

Objectives To assess the provision and need of dermatologic care among Dutch nursing home patients and to obtain recommendations for improvement. Design Cross-sectional nationwide survey. Setting All 173 nursing home organizations in the Netherlands. Participants Physicians working in nursing homes. Measurements Web-based questionnaire concerning the burden of skin diseases in nursing home patients, diagnostic procedures and therapy, collaboration with dermatologists, physicians' level of education, and suggestions for improvement. Results A total of 126 (72.8%) nursing home organizations, with 1133 associated physicians participated in our study and received the questionnaire. A total of 347 physicians (30.6%) completed the questionnaire. Almost all respondents (99.4%) were recently confronted with skin diseases, mostly (pressure) ulcers, eczema, and fungal infections. Diagnostic and treatment options were limited because of a lack of availability and experience of the physicians. More live consultation of dermatologists was suggested as being important to improve dermatologic care. Other suggestions were better education, more usage of telemedicine applications, and better availability of diagnostic and/or treatment procedures like cryotherapy. Conclusion Physicians in nursing homes are frequently confronted with skin diseases. Several changes in organization of care and education are expected to improve dermatologic care in nursing home patients. [ABSTRACT FROM AUTHOR]

Introduction Patients in a vegetative state/unresponsive wakefulness syndrome (VS/UWS) open their eyes spontaneously, but show only reflexive behavior. Although VS/UWS is one of the worst possible outcomes of acquired brain injury, its prevalence is largely unknown. This study's objective was to map the total population of hospitalized and institutionalized patients in VS/UWS in the Netherlands: prevalence, clinical characteristics, and treatment limitations. Methods Nationwide point prevalence study on patients in VS/UWS at least 1 month after acute brain injury in hospitals, rehabilitation centers, nursing homes, institutions for people with intellectual disability, and hospices; diagnosis verification by a researcher using the Coma Recovery Scale-revised (CRS-r); gathering of demographics, clinical characteristics, and treatment limitations. Results We identified 33 patients in VS/UWS, 24 of whose diagnoses could be verified. Patients were on average 51 years old with a mean duration of VS/UWS of 5 years. The main etiology was hypoxia sustained during cardiac arrest and resuscitation. More than 50% of patients had not received rehabilitation services. Most were given life-sustaining treatment beyond internationally accepted prognostic boundaries regarding recovery of consciousness. Seventeen (39%) of 41 patients presumed to be in VS/UWS were found to be at least minimally conscious. Conclusions Results translate to a prevalence of 0.1 to 0.2 hospitalized and institutionalized VS/UWS patients per 100,000 members of the general population. This small figure may be related to the legal option to withhold or withdraw life-sustaining treatment, including artificial nutrition and hydration. On the other hand, this study shows that in certain cases, physicians continue life-prolonging treatment for up to 25 years. Patients have poor access to rehabilitation and are at substantial risk for misdiagnosis. [ABSTRACT FROM AUTHOR]