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Objectives: Medical complications occur frequently in MCS and influence advance medical decision-making. This study aimed to report on medical complications and advance medical decision-making in a nationwide group of MCS patients., Methods: In this descriptive cross-sectional study, clinical and advance medical decision-making characteristics were collected in a survey, completed by the treating physician., Results: The MCS population consisted of 32 patients: 65.6% traumatic etiology, 68.8% male. Patients had a median of five complications: hypertonia/spasticity (81.3%) and pneumonia (50.0%) occurred most frequently. Most patients had curative goals: three patients had a fully curative treatment scenarios, 29 a curative scenario with ≥ 1 treatment restrictions, two a palliative and two a symptomatic scenario. Conversations about advance medical decision-making were complicated by disputes with next of kin, inability to evaluate medical treatment because of medical instability, next of kin not being ready to discuss medical treatment, or a treatment scenario explicitly based on requests of next of kin., Conclusion: Medical complications are common in MCS patients and advance medical decision making was complicated. This legitimates realization of specialized care across acute, post-acute and long-term care. Further longitudinal research into advance medical decision-making is recommended.

Background: Persons with dementia frequently experience mealtime behavioral problems that can result in reduced or lack of intake of food or fluids. Multiple underlying causes and expressions of mealtime behavioral problems complicate its interpretation and intervention, because problems originating from cognitive and functional decline and behavioral changes may interact. Healthcare professionals and family caregivers may encounter a variety of practical and moral dilemmas in dealing with these problems. We aimed at a better understanding of mealtime behavioral problems and related complex issues in nursing home residents with dementia from a daily practice perspective., Methods: We used a mixed-method Group Concept Mapping approach in this study, and collected data online with a panel of 67 healthcare professionals, researchers and relatives from across The Netherlands. The participants contributed to either or all of the following phases: (1) the generation of ideas (brainstorm), (2) sorting, and (3) rating of the ideas. Subsequent phases included data analysis with Groupwisdom ® software and interpretation of the results. Multidimensional scaling and hierarchical cluster analysis resulted in a concept map visualizing the coherence and importance of ideas. Bridging values were calculated, with low values indicating a distinct, clear concept., Results: Brainstorming resulted in 285 statements representing 85 ideas. The concept map visualized three categories capturing ten clusters which describe the management of mealtime behavioral problems, causes of mealtime behavioral problems, and expressions and interpretations of mealtime behavioral problems. Concepts reflecting direct consequences, ethical components, and considerations to handle challenging situations overlapped on the concept map with the highest bridging values (range 0.58-0.87)., Conclusion: This study added to unraveling the complex nature of mealtime behavioral problems, as perceived in practice. It is recommended to comprehensively analyze all components in the management of these problems, in particular being aware of ethical factors and align care for residents with dementia accordingly., (© 2024. The Author(s).)

Background: People with dementia and severe challenging behavior in the Netherlands can be temporarily admitted to highly specialized units when their behavior is not manageable in regular dementia special care units (DSCUs). With scarce evidence available for the treatment of these patients, treatment in these units is in a pioneering phase. To gain more insight into these units, this study investigated organizational characteristics, i.e. admission and discharge characteristics, staffing, the physical environment, and the management of severe challenging behavior., Methods: Three data collection methods were used: 1) a digital questionnaire to be completed by the unit manager, 2) an interview with the physician responsible for medical care and often another practitioner, and 3) an observation of the physical environment for which the OAZIS-dementia questionnaire was used. Descriptive analysis was used for quantitative data and thematic analysis for qualitative data, after which data was interpreted together. Thirteen units participated, with their sizes ranging from 10 to 28 places., Results: Patients were mainly admitted from regular DSCUs, home or mental health care, and discharged to regular DSCUs. A multidisciplinary team comprising at least an elderly care physician or geriatrician, psychologist, and nursing staff member and other therapists as needed provided the treatment. Nursing staff hours per patient considerably differed among units. Nursing staff played a central role in the treatment. Competences such as reflectiveness on one's own behavior, and being able to cope with stressful situations were described as relevant for nursing staff. Investing in a stable nursing staff team was described as important. The units varied in whether their work-up was more intuitive or methodological. In the diagnostic phase, observation together with an extensive analysis of the patient's biography was essential. The units used a broad variety of interventions, and all paid attention to sensory stimuli. In the observation of the physical environment, the safety scored well and domesticity relatively low., Conclusion: Highly specialized units show strong heterogeneity in organizational characteristics and management, which can be understood in the light of the pioneering phase. Despite this, similarities were found in nursing staff roles, frequent multidisciplinary evaluation, and attention to sensory stimuli., (© 2024. The Author(s).)

Objectives: One of the main reasons for people with dementia to move to a dementia special care unit of a nursing home is challenging behavior. This behavior is often difficult to manage, and in the Netherlands, residents are sometimes relocated to a severe challenging behavior specialized unit. However, relocation often comes with trauma and should be prevented if possible. This study aimed to investigate the patient- and context-related reasons for these relocations., Methods: Qualitative multiple case study using individual ( n  = 15) and focus group interviews ( n  = 4 with n  = 20 participants) were held with elderly care physicians, physician assistants, psychologists, nursing staff members, and relatives involved with people with dementia and severe challenging behavior who had been transferred to a severe challenging behavior specialized unit. Audio recordings were transcribed and analyzed with thematic analysis, including directed content analysis., Results: After five cases, data-saturation occurred. The thematic analysis identified three main processes: increasing severity of challenging behavior, increasing realization that the clients' needs cannot be met, and an increasing burden of nursing staff. The interaction between these processes, triggered mainly by a life-threatening situation, led to nursing staff reaching their limits, resulting in relocation of the client., Conclusion: Our study resulted in a conceptual framework providing insight into reasons for relocation in cases of severe challenging behavior. To prevent relocation, the increasing severity of challenging behavior, increasing burden on nursing staff, and increasing realization that the clients' needs cannot be met need attention.

Objectives: In older patients with mental and physical multimorbidity (MPM), personality assessment is highly complex. Our aim was to examine personality traits in this population using the Hetero-Anamnestic Personality questionnaire (HAP), and to compare the premorbid perspective of patients' relatives (HAP) with the present-time perspective of nursing staff (HAP-t)., Design: Cross-sectional., Setting: Dutch gerontopsychiatric nursing home (GP-NH) units., Participants: Totally, 142 GP-NH residents with MPM (excluding dementia)., Measurements: NH norm data of the HAP were used to identify clinically relevant premorbid traits. Linear mixed models estimated the differences between HAP and HAP-t trait scores (0-10). Agreement was quantified by intraclass correlation coefficients (ICCs). All HAP-HAP-t analyses were corrected for response tendency (RT) scores (-10-10)., Results: 78.4% of the patients had at least one premorbid maladaptive trait, and 62.2% had two or more. Most prevalent were: "disorderly" (30.3%), "unpredictable/impulsive" (29.1%) and "vulnerable" (27.3%) behavior. The RT of relatives appeared significantly more positive than that of nursing staff (+1.8, 95% CI 0.6-2.9, p = 0.002). After RT correction, the traits "vulnerable", "perfectionist" and "unpredictable/impulsive" behavior scored higher on the HAP than HAP-t (respectively +1.2, 95% CI 0.6-1.7, p < 0.001; +2.1, 95% CI 1.3-2.8, p < 0.001; +0.6, 95% CI 0.1-1.1, p = 0.013), while "rigid" behavior scored lower (-0.7, 95% CI -1.3 to -0.03, p = 0.042). Adjusted ICCs ranged from 0.15 to 0.58., Conclusions: Our study shows high percentages of premorbid maladaptive personality traits, which calls for attention on personality assessment in MPM NH residents. Results also indicate that the HAP and HAP-t questionnaires should not be used interchangeably for this patient group in clinical practice.

Background: The evidence underpinning palliative care in dementia is mostly based on research in older populations. Little is known about the palliative care needs of people with young-onset dementia (YOD)., Objective: To describe palliative care practices including advance care planning (ACP) in people with YOD residing in Dutch nursing homes., Methods: The study presents baseline questionnaire data from an observational cohort study. Physicians, family caregivers, and nursing staff completed questionnaires about 185 residents with YOD. The questionnaires included items on sociodemographics, quality of life measured with the quality of life in late-stage dementia (QUALID) scale, dementia-related somatic health problems, symptoms, pain medication, psychotropic drugs, and ACP., Results: The mean age was 63.9 (SD 5.8) years. Half (50.3%) of them were female. Alzheimer's disease dementia (42.2%) was the most prevalent subtype. The mean QUALID score was 24.0 (SD 7.9) as assessed by family caregivers, and 25.3 (SD 8.6) as assessed by the nursing staff. Swallowing problems were the most prevalent dementia-related health problem (11.4%). Agitation was often reported by physicians (42.0%) and nursing staff (40.5%). Psychotropics were prescribed frequently (72.3%). A minority had written advance directives (5.4%) or documentation on treatment preferences by the former general practitioner (27.2%). Global care goals most often focused on comfort (73.9%). Proportions of do-not-treat orders were higher than do-treat orders for all interventions except for hospitalization and antibiotics., Conclusions: ACP must be initiated earlier, before nursing home admission. A palliative approach seems appropriate even though residents are relatively young and experience few dementia-related health problems.

Objectives: To evaluate the effectiveness of the SPAN-intervention, a psychosocial intervention aiming at improving a sense of usefulness and engaging in meaningful activities, for community-dwelling people living with young-onset dementia (YOD) and their family caregivers., Methods: A cluster-randomized controlled trial with two parallel groups (SPAN-intervention vs. care as usual) with assessments at baseline and five-month follow-up was performed. Sixty-one persons living with YOD and their family caregivers were included (SPAN-intervention group: n  = 35; care as usual group: n  = 26). Outcomes included, for the person living with YOD, empowerment (operationalized by self-management abilities using the SMAS-30; primary outcome), quality of life, neuropsychiatric symptoms, disability, apathy; and, for the family caregiver, quality of life, emotional distress, sense of competence. Data were analyzed using linear mixed models., Results: We found no statistically significant effects of the SPAN-intervention on empowerment, nor on the secondary outcome measures for persons living with YOD or their family caregivers., Conclusion: Although the SPAN-intervention may provide concrete opportunities to engage in activities and stimulate reciprocity, such as meaningful social activities, this study did not demonstrate intervention effects. Additional qualitative evaluations may provide more insight into the implementation process and experiences of people living with YOD and their family caregivers.This trial was registered at ClinicalTrials.gov (NCT02937883).

Objectives: To develop and evaluate feasibility of a program for family and professional caregivers to identify and manage apathy in people with dementia: the Shared Action for Breaking through Apathy program (SABA)., Methods: A theory- and practice-based intervention was developed and tested among ten persons with apathy and dementia in two Dutch nursing homes from 2019 to 2021. Feasibility was evaluated with interviews with family caregivers ( n  = 7) and professional caregivers ( n  = 4) and two multidisciplinary focus groups with professional caregivers ( n  = 5 and n  = 6)., Results: SABA was found feasible for identifying and managing apathy. Caregivers mentioned increased knowledge and awareness regarding recognizing apathy and its impact on their relationship with the person with apathy. They experienced increased skills to manage apathy, a greater focus on small-scale activities and increased appreciation of small moments of success. The content, form and accessibility of the program's materials were considered facilitating by all stakeholders, as was the compatibility of the procedures with the usual way of working. The expertise and involvement of stakeholders, staff stability and the support of an ambassador and/or manager were facilitating, while insufficient collaboration was a barrier. Organizational and external aspects like not prioritizing apathy, staff discontinuity, and the Covid-19 pandemic were perceived as barriers. A stimulating physical environment with small-scale living rooms, and access to supplies for activities were considered facilitating., Conclusions: SABA empowers family and professional caregivers to successfully identify and manage apathy. For implementation, it is important to take into account the facilitators and barriers resulting from our study.

Background and Objectives: The minimally conscious state (MCS) is a prolonged disorder of consciousness (pDoC) and one of the most severe outcomes of acquired brain injury. Prevalence data are scarce. The aim of this study was to establish the nationwide point prevalence of institutionalized patients in MCS in the Netherlands., Methods: This was a descriptive cross-sectional study in which all 86 Dutch hospitals, all 5 specialized pDoC rehabilitation facilities, and all 274 nursing homes were asked whether they were treating patients with a pDoC on the point prevalence date of September 15, 2021. Each patient's legal representative provided informed consent for their inclusion. Patient level of consciousness was verified using the Coma Recovery Scale-Revised (CRS-R) in a single assessment session performed in the facility of residence by an experienced physician. Data on patient demographics, etiology, level of consciousness, facility of residence, and clinical status were collected from a questionnaire by the treating physician. The prevalence of institutionalized patients in MCS of per 100,000 members of the Dutch population was calculated, based on actual census data., Results: Seventy patients were reported to have a pDoC, of whom 6 were excluded. The level of consciousness was verified for 49 patients while for 15, it could not be verified. Of the patients verified, 38 had a pDoC, of whom 32 were in MCS (mean age 44.8 years, 68.8% male). The prevalence of institutionalized patients in MCS is 0.2-0.3 per 100,000 Dutch inhabitants. Traumatic brain injury was present in 21 of 32 patients (65.6%). Specialized pDoC rehabilitation was received by 17 of 32 patients (53%), with the rest admitted to nursing homes. The most frequent signs of consciousness on the CRS-R were visual pursuit, reproducible movement to command, and automatic motor response., Discussion: This nationwide study revealed a low prevalence of institutionalized patients in MCS in the Netherlands. These findings are now being used to organize pDoC care in this country., (Copyright © 2023 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the American Academy of Neurology.)

Background: Although apathy is common in people with dementia and has profound negative effects, it is rarely diagnosed nor specifically treated in nursing homes. The aim of this study is to explore experiences in identifying and managing apathy from the perspectives of people with dementia and apathy (PwA), family caregivers (FCs) and professional caregivers (PCs)., Methods: Descriptive qualitative study with purposive sampling, comprising eleven semi-structured in-depth interviews with PwA, FCs or PCs and focus groups with twelve PCs in Dutch nursing homes. Seventeen additional in-depth interviews with caregivers were held, after signals of increasing apathy during the first Covid-19 lockdown. Using an inductive approach, data was analysed thematically to explore the experiences in identifying and managing apathy from the perspective of different stakeholders., Results: Three themes were identified: 1) the challenge to appraise signals, 2) the perceived impact on well-being, 3) applied strategies to manage apathy. Although participants described apathy in line with diagnostic criteria, they were unfamiliar with the term apathy and had difficulties in appraising signals of apathy. Also, the perceived impact of apathy varied per stakeholder. PwA had difficulties reflecting on their internal state. FCs and PCs experienced apathy as challenging when it reduced the well-being of PwA or when they themselves experienced ambiguity, frustration, insecurity, disappointment or turning away. Dealing with apathy required applying specific strategies that included stimulating meaningful contact, adjusting one's expectations, and appreciating little successes., Conclusions: When addressing apathy in nursing homes, it is important to consider that a) all stakeholders experience that appraising signals of apathy is challenging; b) apathy negatively influences the well-being of people with dementia and especially their FCs and PCs; and c) FCs and PCs can successfully, albeit temporarily, manage apathy by using specific strategies., (© 2023. The Author(s).)

Objective: Conceptualize successful treatment of persons with dementia and severe challenging behavior as perceived by professionals., Methods: In this concept mapping study 82 experts in dementia care participated. The study followed two phases of data collection: (1) an online brainstorm where participants completed the focus prompt: ' I consider the treatment of people with severe challenging behavior in dementia successful if.' ; (2) individual sorting and rating of the collected statements followed by data analysis using multidimensional scaling and hierarchical cluster analysis, resulting in a concept map., Results: Three clusters were identified, the first addressing treatment outcomes and the latter two addressing treatment processes, each divided into sub-clusters: (1) well-being, comprising well-being of the person with dementia and all people directly involved ; (2) multidisciplinary analysis and treatment , comprising multidisciplinary analysis, process conditions, reduction in psychotropic drugs, and person-centered treatment; and (3) attitudes and skills of those involved , comprising consistent approach by the team, understanding behavior, knowing how to respond to behavior, and open attitudes ., Conclusions: Successful treatment in people with dementia and severe challenging behavior focuses on well-being of all people involved wherein attention to treatment processes including process conditions is essential to achieve this.

Background: Nursing homes were disproportionally affected by the COVID-19 pandemic. Vaccination was considered critical for the normalization of daily live of nursing home residents. The present study investigates the impact of the prolonged COVID-19 pandemic and the effect of vaccinations on the daily lives of residents and staff in Dutch nursing homes., Setting and Participants: The sample consisted of 78 nursing homes that participated in the Dutch national pilot on nursing home visits after the COVID-19 pandemic. One contact person per nursing home was approached for participation in this mixed-methods cross-sectional study., Methods: Data was collected twice through questionnaires in April and December 2021. Quantitative questions focused on recent COVID-19 outbreaks, progress of vaccination, effects of vaccination on daily living in the nursing home and burden experienced by staff. Open-ended questions addressed the prolonged effect of the pandemic on residents, family members and staff., Results: The overall vaccination rate of residents across nursing homes appeared to be high among both residents and staff. However, daily living in the nursing home had not returned to normal concerning personal interactions, visits, the use of facilities and work pressure. Nursing homes continued to report a negative impact of the pandemic on residents, family members and staff., Conclusions: Restrictions to the daily lives of residents in nursing homes were stricter than restrictions imposed on society as a whole. Returning to a normal daily living and working was found to be complex for nursing homes. With the emergence of new variants of the virus, policies strongly focusing on risk aversion were predominantly present in nursing homes., (© 2023. The Author(s).)

Background: Persons with dementia are at risk of developing nutritional problems. Theoretical models on nutritional problems have been developed, but have not been evaluated with healthcare professionals., Objective: This study aimed to explore the comprehensiveness and applicability of a theoretical model of nutritional problems in persons with dementia for daily nursing home practice., Methods: A qualitative design employing a combined deductive and inductive approach was used. Healthcare professionals were eligible to participate if they 1) had expert knowledge of and experience with nutritional problems related to dementia, and 2) worked in a nursing home affiliated with an academic network covering the east and south of the Netherlands. Three focus group interviews with 20 healthcare professionals from seven professions were held. We conducted thematic analysis and we compared themes with existing theoretical models from the literature., Results: We identified six themes, four of which corresponded with the existing models (observing and analysing nutritional problems; consequences of nutritional problems; functioning of the person with dementia; environmental factors). Interprofessional collaboration and ethical factors were identified as new themes. The analyses indicated interactions within each theme, between themes, and a bidirectional connection between themes., Conclusions: This study demonstrated the relevance of interprofessional collaboration and ethical considerations in nutritional problems related to dementia. It uncovered complex bidirectional relations within and between factors regarding nutritional problems. All aspects should be taken into account to minimize the consequences of nutritional problems for persons with dementia.

Considering the limited availability of dermatologists to perform live consultations in nursing homes, teledermatology could be used as a triage tool for selection of cases for which live consultations are considered to be of added value compared with teledermatology. This prospective, multicentre observational study aimed to determine the reasons for dermatology consultations in nursing homes and the estimated value of teledermatology as a triage tool, including potential predictors. Skin tumours were the most common reason (n = 161/270; 59.6%) for dermatology consultations in nursing homes. Dermatologists estimated that live consultations added value compared with teledermatology in 67.8% of cases (n = 183). Multivariable logistic regression showed that predictors for this added value of live consultations were: consultations because of a skin tumour; consultations during which a diagnostic or treatment procedure was performed; consultations during which a secondary diagnosis was made; and the dermatologist involved. These results indicate that using teledermatology as a triage tool potentially reduces the need for additional live consultations in one-third of patients, whereas live consultations are estimated to have added value over teledermatology in two-thirds of cases. To make optimal use of the limited capacity for live consultations by dermatologists, it could therefore be helpful if elderly care physicians use teledermatology more frequently.

Background: Situations of extreme challenging behavior such as very frequent and/or severe agitation or physical aggression in nursing home residents with dementia can be experienced as an impasse by nursing home staff and relatives. In this distinct part of our WAALBED (WAAL-Behavior-in-Dementia)-III study, we aimed to explore these situations by obtaining the experiences and perspectives of nursing home staff and relatives involved. This can provide a direction in providing tools for handling extreme challenging behavior of nursing home residents with dementia and may improve their quality of life., Methods: Qualitative multiple case study with individual interviews and focus group discussions. Interviewees were elderly care physicians, psychologists, care staff members, unit managers and relatives (n = 42). They were involved with nursing home residents with dementia and extreme challenging behavior living on dementia special care units in the Netherlands. For these residents, external consultation by the Centre for Consultation and Expertise was requested. Audio-recordings of the interviews were transcribed verbatim and analyzed with thematic analysis, including conventional content analysis., Results: Seven cases were included. Forty-one individual interviews and seven focus group discussions were held. For six stakeholder groups (resident, relative, care staff, treatment staff, nursing home staff, and the organization), three main factors could be identified that contributed to experiencing a situation of extreme challenging behavior as an impasse: 1) characteristics and attitudes of a stakeholder group, 2) interaction issues within a stakeholder group and 3) interaction issues among (groups of) stakeholders. The experienced difficulties with the resident's characteristics, as well as suboptimal interdisciplinary collaboration and communication among the nursing home staff are remarkable. Nursing home staff kept searching for a golden solution or lost hope., Conclusions: This study offers important insights into situations of extreme challenging behavior in nursing home residents with dementia and offers caregivers targets for improving care, treatment and interdisciplinary collaboration, such as working uniformly and methodically., (© 2022. The Author(s).)

Objective: To assess short- and long-term mortality and risk factors in nursing home patients with COVID-19 infection., Design: Retrospective 2-center cohort study., Setting and Participants: Dutch nursing home patients with clinically suspected COVID-19 infection confirmed by reverse transcription-polymerase chain reaction testing., Methods: 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., Results: 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)., Conclusions and Implications: 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., (Copyright © 2022 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Background: The aim of this Delphi study was to reach consensus about definition, operationalization and assessment of visual pursuit (VP) and visual fixation (VF)., Methods: In a three-round international Delphi study, clinical and research experts on disorders of consciousness indicated their level of agreement on 87 statements using a 5-point Likert scale. Consensus for agreement was defined by a median of 5, an interquartile range (IQR) ≤ 1, and ≥ 80% indicating moderate or strong agreement., Results: Forty-three experts from three continents participated, 32 completed all three rounds. For VP, the consensus statements with the highest levels of agreement were on the term 'pursuit of a visual stimulus', the description 'ability to follow visually in horizontal and/or vertical plane', a duration > 2 s, tracking in horizontal and vertical planes, and a frequency of more than 2 times per assessment. For VF, consensus statements with the highest levels of agreement were on the term 'sustained VF', the description 'sustained fixation in response to a salient stimulus', a duration of > 2 s and a frequency of 2 or more times per assessment. The assessment factors with the highest levels of agreement were personalized stimuli, the use of eye tracking technology, a patient dependent time of assessment, sufficient environmental light, upright posture, and the necessity to exclude ocular/oculomotor problems., Conclusion: This first international Delphi study on VP and VF in patients with disorders of consciousness provides provisional operational definitions and an overview of the most relevant assessment factors., (© 2021. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany.)

The measures taken in Dutch nursing homes during the first wave of the COVID-19 pandemic resulted in both an increase and a decrease of challenging behavior in nursing home residents. Staff undertook various initiatives to reduce the negative effects. For example, video calling between residents and their relatives was facilitated. In addition, initiatives in digital care (telehealth) were deployed. The aim of this study was to explore nursing home practitioners' experiences with online communication between residents and relatives, working remotely in general and the remote treatment of challenging behavior in particular. One hundred and seventy-five nursing home professionals (psychologists, elderly care specialists, nursing specialists, daytime activities coordinators) completed an online questionnaire at the end of 2020/start of 2021. Open and closed questions showed that face-to-face contacts are preferred over online communication. Online communication was mainly seen as a (meaningful) addition. Although professionals wanted to continue some of their work remotely, and found this efficient and workload-reducing, they felt that this could impair their job satisfaction and the quality of care. For remote work and remote treatment, each task needs to be evaluated on whether it can be performed properly and whether that results in good care. More research into online communication, remote working and digital care in nursing homes is needed.

Objectives: On May 11, the Dutch Government allowed 26 nursing homes to welcome 1 visitor per resident, after 2 months of lockdown. The study aimed to monitor in-depth the feasibility of the regulations and their impact on the well-being of residents, their visitors, and healthcare staff., Design: Mixed-methods study in 5 of the 26 facilities; the facilities were affiliated to an academic network of nursing homes., Participants: Visitors and healthcare professionals., Intervention: Allowing visitors using local regulations based on national guidelines., Measurements: Digital questionnaire, analyzing documentation such as infection prevention control protocols, attending meetings of COVID-19 crisis teams, in-depth telephone or in-person interviews with visitors and healthcare professionals, and on-site observations., Results: National guidelines were translated with great variety into local care practice. Healthcare professionals agreed that reopening would increase the well-being of the residents and their loved ones. However, there were also great worries for increasing workload, increasing the risk of emotional exhaustion, and the risk of COVID-19 infections. Compliance with local regulations was generally satisfactory, but maintaining social distance and correctly wearing face masks appeared to be difficult. Care staff remained ambivalent for fear of infections. In general, allowing visitors was experienced as having a positive impact on the well-being of all stakeholders. Nevertheless, some residents with dementia showed negative effects., Conclusion: The complete lockdown of Dutch nursing homes had a substantial impact on the well-being of the residents. The reopening was welcomed by all stakeholders, but provided a high organizational workload as well as feelings of ambivalence among care staff. In the second wave, a more tailored approach is being implemented. However, facilities are sometimes still struggling to find the right balance between infection control and well-being.

Background: COVID-19 restrictions in nursing homes resulted in a reduction in stimuli for residents. This study aimed to explore observed effects of changes in stimuli, both targeted (e.g., planned recreational activities) and untargeted (e.g., spontaneous noise), on challenging behavior in nursing home residents during COVID-19 anti-pandemic measures., Methods: In an online survey, nursing home healthcare professionals in the Netherlands provided their perspectives on the effects of the reduction in untargeted stimuli on residents with mild, advanced, or no dementia, and on different types of challenging behavior (i.e., psychotic, depressed, anxious, agitated, or apathetic behavior). Additionally, we asked participants' opinions about strategies for limiting untargeted stimuli and for adjusting targeted stimuli for optimal management of challenging behaviors., Results: In total, 199 professionals completed the survey. Residents with advanced dementia and those with psychotic and agitated behavior seemed to benefit from the reductions in stimuli not specifically targeted at the resident. In contrast, residents without dementia and those with depressive and apathetic behavior seemed to be negatively affected by reductions in untargeted stimuli. Participants would like to continue reducing untargeted stimuli in the future (e.g., limiting the use of corridors adjacent to residents' rooms) and to adapt existing or introduce new initiatives involving targeted stimuli (e.g., small-scale, individually tailored activities). Responses to open-ended questions revealed additional initiatives that could be useful in nursing home care., Conclusions: This study provided lessons to learn from the COVID-19 measures in nursing homes. While many residents may have been negatively affected by the restrictions imposed during the pandemic, specific resident groups may have benefitted from the reduction in untargeted stimuli and from the adjustments made to daily activities. Various strategies and initiatives used in nursing homes during the pandemic seem promising for meeting individual needs in managing challenging behavior. These findings suggest that certain stimuli may affect specific resident groups differently. This underlines the importance of finding the right balance between stimuli and tranquility, tailored to the needs of individual residents. It is important to consider the stimuli present in nursing homes, whether targeted or untargeted, when analyzing and treating challenging behavior., (© 2022. The Author(s).)

Objectives: The complex care needs of frail older persons living at home is a major challenge for health care systems worldwide. One possible solution is to employ a primary care physician (PCP) with additional geriatric expertise. In the Netherlands, elderly care physicians (ECPs), who traditionally work in nursing homes, are increasingly encouraged to utilize their expertise within primary care. However, little is known about how PCPs and ECPs collaborate. Therefore, we aimed to unravel the nature of the current PCP-ECP collaboration in primary care for frail older persons, and to identify key concepts for success., Design: A qualitative multiple case study with semistructured interviews., Setting and Participants: A selection of 22 participants from 7 "established collaboration practices" within the primary care setting in the Netherlands, including at least 1 ECP, 1 PCP, and 1 other health care professional for every included established collaboration practice., Methods: Transcripts of individual interviews were analyzed using largely double and independent open and axial coding, and formulation of themes and subthemes., Results: Data analysis revealed 4 key concepts for success: (1) clarification of roles and expectations (ie, patient-centered care and embedding in existing care networks), (2) trust, respect, and familiarity as drivers for collaboration (ie, mutual trust through knowing each other and having shared goals); (3) framework for regular communication (ie, structural meetings and a shared vision); and (4) government, payer, and organization support (ie, financial support and emphasis on the collaboration's urgency by organizations and national policy makers)., Conclusions and Implications: For a successful generalist-specialist collaboration, health care professionals need to invest in building relationships and mutual trust, and incorporating their efforts in the existing care networks to guarantee patient-centeredness. When provided with reimbursement and appreciation, this collaboration is a promising change in general practice to improve the care and outcomes of frail older persons., (Copyright © 2021. Published by Elsevier Inc.)

Background: To protect nursing home residents, many governments around the world implemented blanket visitor bans in March and April 2020. As a consequence, family caregivers, friends, and volunteers were not allowed to enter nursing homes, while residents were not allowed to go out. Up until now, little is known on the long-term consequences and effects of visiting bans and re-opening of nursing homes. The aim of the study was to assess the long-term effects of the pandemic on residents, family members, and staff, and their preparedness for the next coronavirus wave., Methods: A mixed-methods approach was used, consisting of a questionnaire and analyses of documentation (local visiting protocols). Of the 76 nursing home locations that participated in a Dutch national pilot on welcoming visitors back into nursing homes, 64 participated in this follow-up study. Data were collected in September/October 2020. For each nursing home, one contact person completed the questionnaire. Descriptive statistics were calculated for quantitative questionnaire data. Data on open-ended questions, as well as data from the documentation, were analyzed thematically., Results: The study demonstrated that the consequences of strict visiting bans do not disappear at the moment the visiting ban is lifted. Although in October 2020, daily life in nursing homes was more "back to normal," more than one-third of the respondents indicated that they still applied restrictions. Compared to the situation before the pandemic, fewer volunteers were working in the nursing homes, grandchildren visited their relative less often, and visits differed., Conclusions: Five months after the visiting ban in Dutch nursing homes had been lifted, it still had an impact on residents, family members, and staff. It is questionable whether nursing homes feel prepared for welcoming visitors in the case of new COVID-19 infections. Nursing homes indicated that they felt prepared for the next wave, while at the same time, they were particularly concerned about staff well-being and vitality. It seems wise to invest in staff well-being. In addition, it seems desirable to think about how to support nursing homes in seeking a balance between infection prevention and well-being of residents, family members, and staff., (© 2021. The Author(s).)

Objectives: Before drawing conclusions on the contribution of an effective intervention to daily practice and initiating dissemination, its quality and implementation in daily practice should be optimal. The aim of this process evaluation was to study these aspects alongside a randomized controlled trial investigating the effects of a multidisciplinary biannual medication review in long-term care organizations (NTR3569)., Design: Process evaluation with multiple measurements., Setting: Thirteen units for people with dementia in six long-term care organizations in the Netherlands., Participants: Physicians, pharmacists, and nursing staff of participating units., Intervention: The PROPER intervention is a structured and biannually repeated multidisciplinary medication review supported by organizational preparation and education, evaluation, and guidance., Measurements: Web-based questionnaires, interviews, attendance lists of education sessions, medication reviews and evaluation meetings, minutes, evaluation, and registration forms., Results: Participation rates in education sessions (95%), medication reviews (95%), and evaluation meetings (82%) were high. The intervention's relevance and feasibility and applied implementation strategies were highly rated. However, the education sessions and conversations during medication reviews were too pharmacologically oriented for several nursing staff members. Identified barriers to implementation were required time, investment, planning issues, and high staff turnover; facilitators were the positive attitude of professionals toward the intervention, the support of higher management, and the appointment of a local implementation coordinator., Conclusion: Implementation was successful. The commitment of both higher management and professionals was an important factor. This may partly have been due to the subject being topical; Dutch long-term-care organizations are pressed to lower inappropriate psychotropic drug use.

Objectives: We investigated the 2-week prevalence and correlates of very frequent physical aggression (PA) and vocalizations in nursing home (NH)-residents with dementia., Method/design: This cross-sectional study used combined data of 2074 NH-residents from four studies, collected from 119 dementia special care units in 26 Dutch NH. Very frequent PA was defined as scoring 6 or 7 on the items 'hitting', pushing', 'biting' and 'kicking' of the Cohen Mansfield Agitation Inventory; very frequent vocalizations as scoring 6 or 7 on 'screaming' and 'making strange noises'. We compared NH-residents with very frequent PA or vocalizations with residents with less frequent PA or vocalizations, assessing correlates using univariate and multivariate multilevel logistic regression analyses., Results: We found a 2-week prevalence of 2.2% (95% confidence interval (CI): 1.63-2.89) of very frequent PA and 11.5% of very frequent vocalizations (95% CI: 10.23-12.98). Very frequent PA was only associated with apathy (odds ratio (OR)=1.93, 95% CI: 1.04-3.61). Correlates of very frequent vocalizations were age (OR = 0.97, 95% CI: 0.951-0.998), dementia severity (overall p -value 0.020), antipsychotic drug use (OR = 1.56, 95% CI: 1.08-2.26), antiepileptic drug use (OR = 2.75, 95% CI: 1.34-5.68) and euphoria (OR = 2.01, 95% CI: 1.22-3.31)., Conclusion: Characteristics of NH-residents with very frequent PA or very frequent vocalizations differ from those of NH-residents with less frequent PA or vocalizations. Frontal lobe damage, boredom, pain and/or external factors may explain several of the found associations, but further research is necessary. Our findings may contribute to better care for these residents and thereby to improving their quality of life.

Background: 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., Objective: 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., Design: Cluster-randomized controlled trial., Methods: 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., Results: 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., Conclusions: 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., Competing Interests: Declaration of Competing Interest None., (Copyright © 2021 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Objectives: From the perspective of the nursing home (NH) practitioners, to gain understanding of (1) whether challenging behavior in NH residents changed during the COVID-19 measures, (2) whether the practitioners' involvement in the treatment of challenging behavior changed, (3) what can be learned from the experience of NH staff., Methods: A mixed methods study with a survey in 323 NH practitioners (psychologists, elderly care physicians, nurse practitioners) in the Netherlands, and in-depth interviews in 16 NH practitioners. Nonparametric analyses were used to compare estimated proportions of residents with increased and with decreased challenging behavior. Content analyses were conducted for open-ended questions and in-depth interviews., Results: Participants reported changes in challenging behavior with slightly higher proportions for increased (Q1/Mdn/Q3: 12.5%, 21.7%, 30.8%) than for decreased (8.7%, 14.8%, 27.8%, Z = -2.35, p = .019) challenging behavior. Half of the participants reported that their work load increased and work satisfaction worsened during the measures. Different strategies were described to respond to the effects of COVID-19 measures, such as video calls, providing special areas for residents to meet their loved ones, adjusting activities, and reducing the exposure to negative news., Conclusions: Because COVID-19 measures resulted in both increased and decreased challenging behavior in NH residents, it is important to monitor for their potential long lasting effects. Increased work load and worsened work satisfaction of the NH staff, together with the changes in type of challenging behavior, indicate that the harmful effects of the anti-pandemic measures should be taken seriously.

Objective: 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)., Design: An observational longitudinal study., Setting and Participants: A total of 278 residents with YOD were recruited from 13 YOD special care units in the Netherlands., Methods: 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., Results: 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., Conclusion and Implications: 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., (Copyright © 2020 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Objectives: To evaluate the effect of the PROPER intervention in nursing home residents with dementia on the prevalence of psychotropic drug use and neuropsychiatric symptoms., Design: A cluster-randomized controlled design with two parallel groups (intervention versus usual care) and assessments at 0, 6, 12, and 18 months., Setting: Thirty-one dementia special care units within 13 long-term care organizations in the Netherlands., Participants: Three hundred eighty nursing home residents with dementia., Intervention: The PROPER intervention consisted of a structured and repeated multidisciplinary medication review, supported by education and continuous evaluation., Measurements: Prescriptions of antipsychotics, antidepressants, anxiolytics, and hypnotics, and occurrence of neuropsychiatric symptoms., Results: The prescription of any type of psychotropic drugs increased in the intervention group, and decreased in the control group, with an estimated difference of 3.9 percentage points per 6 months (p = 0.01). Effects for the individual drug groups were minor (differences of 1.6 percentage points and below per 6 months) and not statistically significant. The occurrence of neuropsychiatric symptoms remained stable in both the intervention and control groups during the follow-up of 18 months., Conclusions: The PROPER intervention failed to demonstrate effectiveness in reducing the prevalence of psychotropic drugs. It may be interesting to enrich the intervention with components that address personal attitudes and communication between nursing home professionals, not only with respect to the prescription of psychotropic drugs, but also to neuropsychiatric symptoms.The study has been registered in The Netherlands Trial Register (NTR3569).

Background: Prolonged disorders of consciousness (PDOC) are amongst the severest sequelae of acquired brain injury. Evidence regarding epidemiology and rehabilitation outcomes is scarce. These knowledge gaps and psychological distress in families of PDOC patients may complicate clinical decision-making. The complex PDOC care and associated moral dilemmas result in high workload in healthcare professionals. Since 2019, all PDOC patients in the Netherlands have access to intensive neurorehabilitation up to 2 years post-injury provided by one rehabilitation center and four specialized nursing homes. Systematic monitoring of quantitative rehabilitation data within this novel chain of care is done in a study called DOCTOR. The optimization of tailored PDOC care, however, demands a better understanding of the impact of PDOC on patients, their families and healthcare professionals and their views on rehabilitation outcomes, end-of-life decisions and quality of dying. The True Outcomes of PDOC (TOPDOC) study aims to gain insight in the qualitative outcomes of PDOC rehabilitation and impact of PDOC on patients, their families and healthcare professionals., Methods: Nationwide multicenter prospective cohort study in the settings of early and prolonged intensive neurorehabilitation with a two-year follow-up period, involving three study populations: PDOC patients > 16 years, patients' family members and healthcare professionals involved in PDOC care. Families' and healthcare professionals' views on quality of rehabilitation outcomes, end-of-life decisions and dying will be qualitatively assessed using comprehensive questionnaires and in-depth interviews. Ethical dilemmas will be explored by studying moral deliberations. The impact of providing care to PDOC patients on healthcare professionals will be studied in focus groups., Discussion: To our knowledge, this is the first nationwide study exploring quality of outcomes, end-of-life decisions and dying in PDOC patients and the impact of PDOC in a novel chain of care spanning the first 24 months post-injury in specialized rehabilitation and nursing home settings. Newly acquired knowledge in TOPDOC concerning quality of outcomes in PDOC rehabilitation, ethical aspects and the impact of PDOC will enrich quantitative epidemiological knowledge and outcomes arising from DOCTOR. Together, these projects will contribute to the optimization of centralized PDOC care providing support to PDOC patients, families and healthcare professionals.

Objectives: Extreme neuropsychiatric symptoms can be a heavy burden for nursing home (NH) residents, relatives, and caregivers. Sometimes, when extreme neuropsychiatric symptoms are considered refractory, continuous palliative sedation is administered. The aim of this study was to explore the trajectory leading to continuous palliative sedation and its administration in NH residents with dementia and refractory neuropsychiatric symptoms., Design: A qualitative interview and explorative study was performed., Setting and Participants: Relatives, elderly care physicians, and other staff members involved with 3 NH residents with dementia and extreme refractory neuropsychiatric symptoms who received continuous palliative sedation were interviewed. These NH residents lived on dementia special care units of 3 NHs in the Netherlands., Methods: Consecutive sampling was used to select participants. Medical files were studied. Semistructured interviews were conducted. Transcriptions were analyzed with thematic analysis, including directed content analysis., Results: Nine in-depth interviews with 13 participants were held. Analysis resulted in 6 main themes, with several subthemes reflecting phases of the continuous palliative sedation trajectory: (1) run-up, describing an unbearable struggle of the resident; (2) turning point, at which hope was lost; (3) considering continuous palliative sedation and administration of intermittent sedation; (4) decision to start continuous palliative sedation based on 1 decisive trigger; (5) administration of continuous palliative sedation with stakeholders experiencing relief; and (6) evaluation., Conclusions and Implications: The trajectory leading up to continuous palliative sedation in NH residents with dementia and extreme refractory neuropsychiatric symptoms was complex and burdensome, but the initiation led to relief and contentment for all those involved. This study highlights that continuous palliative sedation can be a valuable treatment option among these residents. A recommendation is to include external consultation in the decision process and to administer intermittent sedation as a preceding step when continuous palliative sedation is considered., (Copyright © 2020 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Objectives: 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., Methods: 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., Results: 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)., Conclusions: 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.

Objectives: Establishing the prevalence and determinants of neuropsychiatric symptoms (NPS) in patients with acquired brain injury (ABI) in nursing homes., Design: Cross-sectional, observational study., Setting and Participants: Patients 18-65 years old with ABI in special care units in Dutch nursing homes., Methods: 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., Results: 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., Conclusions and Implications: 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., (Copyright © 2020 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Objectives: To prevent and control COVID-19 infections, nursing homes across the world have taken very restrictive measures, including a ban for visitors. These restrictive measures have an enormous impact on residents' well-being and pose dilemmas for staff, although primary data are lacking. A Dutch guideline was developed to cautiously open nursing homes for visitors during the COVID-19 pandemic. This study reports the first findings on how the guideline was applied in the local context; the compliance to local protocols; and the impact on well-being of residents, their family caregivers, and staff., Design: A mixed-methods cross-sectional study was conducted., Setting and Participants: In total, 26 nursing homes were permitted to enlarge their possibilities for allowing visitors in their facility. These nursing homes were proportionally representative of the Netherlands as they were selected by their local Area Health Authority for participation. At each nursing home, a contact person was selected for participation in the current study., Methods: A mixed-methods cross-sectional study was conducted, consisting of questionnaire, telephone interviews, analyses of documentation (ie, local visiting protocols), and a WhatsApp group., Results: Variation in local protocols was observed, for example, related to the use of personal protective equipment, location, and supervision of visits. In general, experiences were very positive. All nursing homes recognized the added value of real and personal contact between residents and their loved ones and indicated a positive impact on well-being. Compliance with local guidelines was sufficient to good. No new COVID-19 infections were reported during this time., Conclusions and Implications: These results indicate the value of family visitation in nursing homes and positive impact of visits. Based on these results, the Dutch government has decided to allow all nursing homes in the Netherlands to cautiously open their homes using the guidelines. More research is needed on impact and long-term compliance., (Copyright © 2020 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

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.

Objective: The Act in case of Depression program showed effects on the quality of life and depression in nursing home (NH) residents. We aimed to explore the effects of this complex multidisciplinary program on job satisfaction, job demands, and autonomy in nursing home staff., Design: Four data points from a stepped-wedge cluster-randomized trial on patient outcomes were used for secondary analyses on staff outcomes., Setting: Sixteen dementia special care and 17 somatic care units in Dutch NHs.Participants were 717 (90.1%) care staff or trainees, 34 (4.3%) paramedical staff, and 45 (5.7%) other staff members.Intervention describes procedures for nursing staff, activity therapists, psychologists, and physicians. It contains evidence-based pathways for depression assessment, treatment, and monitoring treatment results., Results: Mixed models for intention-to-treat analyses showed no significant changes in job demands, job satisfaction, or autonomy. Models corrected for the ratio of unit residents who received, when indicated, a specific program component revealed reduced job demands and improved job satisfaction and autonomy when treatment procedures were used. A better use of assessment procedures was associated with increased job demands, while conducting monitoring procedures was associated with increased job demands and decreased autonomy., Conclusions: Components of complex care programs may affect the staff outcomes in opposite directions and, taken together, produce a zero-sum or a statistically insignificant effect. While implementing treatment protocols affecting patients directly can also improve job outcomes such as satisfaction and autonomy and decrease job demands, it is possible that other procedures of complex programs may have unfavorable effects on job outcomes. It is important to account for specific components of complex interventions when evaluating intervention effects.

Objective: To evaluate the cost-consequences of an intervention for the management of neuropsychiatric symptoms in nursing home residents with young-onset dementia., Methods: A stepped wedge design was used. The intervention consisted of an educational program and a multidisciplinary care program and was implemented in 13 nursing homes from September 2015 to March 2017. Costs' outcomes included the time investment of the elderly care physician and health care psychologists regarding the management of neuropsychiatric symptoms, residents' psychotropic drug use, nursing staff absenteeism, and costs of the educational program. Composite cost measure contained the sum of costs of staff absenteeism, costs on psychotropic drugs, and costs of the educational program. Costs of time investment were investigated by comparing means. Costs of psychotropic drug use were analyzed with mixed models at resident level and as part of the composite cost measure on unit level. Staff absenteeism was also analyzed at unit level., Results: Compared with care as usual, the mean costs of time invested decreased with €36.79 for the elderly care physician but increased with €46.05 for the health care psychologist in the intervention condition. Mixed model analysis showed no effect of the intervention compared with care as usual on the costs of psychotropic drug use, staff absenteeism, and the composite cost measure. The costs of the educational program were on average €174.13 per resident., Conclusion: The intervention did not result in increased costs compared with care as usual. Other aspects, such as the lack of a structured working method, should be taken into account when considering implementation of the intervention., (© 2019 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons, Ltd.)

Objectives: The aim of this study was to investigate survival time and life-expectancy in people with young-onset dementia (YOD) and to examine the relationship with age, sex, dementia subtype and comorbidity., Design, Setting and Participants: Survival was examined in 198 participants in the Needs in Young-onset Dementia study, including participants with Alzheimer's dementia (AD), vascular dementia (VaD) and frontotemporal dementia (FTD)., Measures: The primary outcomes were survival time after symptom onset and after date of diagnosis. Cox proportional hazards models were used to explore the relationship between survival and age, sex, dementia subtype and comorbidity. Additionally, the impact on remaining life expectancy was explored., Results: During the six-year follow-up, 77 of the participants died (38.9%), 78 participants survived (39.4%) and 43 were lost to follow-up (21.7%). The mean survival time after symptom onset and diagnosis was 209 months (95% CI 185-233) and 120 months (95% CI 110-130) respectively. Participants with AD had a statistically significant shorter survival compared with VaD participants, both regarding survival after symptom onset (p = 0.047) as well as regarding survival after diagnosis (p = 0.049). Younger age at symptom onset or at diagnosis was associated with longer survival times. The remaining life expectancy, after diagnosis, was reduced with 51% for males and 59% for females compared to the life expectancy of the general population in the same age groups., Conclusion/implications: It is important to consider the dementia subtype when persons with YOD and their families are informed about the prognosis of survival. Our study suggests longer survival times compared to other studies on YOD, and survival is prolonged compared to studies on LOD. Younger age at symptom onset or at diagnosis was positively related to survival but diagnosis at younger ages, nevertheless, still diminishes life expectancy dramatically.

Background: The vegetative state, also known as the unresponsive wakefulness syndrome, is one of the worst possible outcomes of acquired brain injury and confronts rehabilitation specialists with various challenges. Emergence to (minimal) consciousness is classically considered unlikely beyond 3-6 months after non-traumatic or 12 months after traumatic etiologies. A growing body of evidence suggests that these timeframes are too narrow, but evidence regarding chances of recovery is still limited., Objective: To identify the moment of recovery of consciousness in documented cases of late emergence from a vegetative state., Methods: Four cases of apparent late recovery of consciousness, identified within a prospective cohort study, were studied in-depth by analyzing medical, paramedical and nursing files and interviewing the patients' families about their account of the process of recovery., Results: All patients were found to have shown signs of consciousness well within the expected time frame (5 weeks-2 months post-ictus). These behaviors, however, went unnoticed or were misinterpreted, leading to a diagnostic delay of several months to over 5 years. Absence of appropriate diagnostics, the use of erroneous terminology, sedative medication but also patient-related factors such as hydrocephalus, language barriers and performance fluctuations are hypothesized to have contributed to the delay., Conclusions: Delayed recognition of signs of consciousness in patients in a vegetative state may not only lead to suboptimal clinical care, but also to distorted prognostic figures. Discriminating late recovery from the delayed discovery of consciousness, therefore, is vital to both clinical practice and science.

Nursing home physicians face heavy workloads, because of the aging population and rising number of older adults with one or more chronic diseases. Skill mix change, in which professionals perform tasks previously reserved for physicians independently or under supervision, could be an answer to this challenge. The aim of this study was to describe how skill mix change in nursing homes is organized from four monodisciplinary perspectives and the interdisciplinary perspective, what influences it, and what its effects are. The study focused particularly on skill mix change through the substitution of nurse practitioners, physician assistants, or registered nurses for nursing home physicians. Five focus group interviews were conducted in the Netherlands. Variation in tasks and responsibilities was found. Despite this variation, stakeholders reported increased quality of health care, patient centeredness, and support for care teams. A clear vision on skill mix change, acceptance of nurse practitioners, physician assistants, and registered nurses, and a reduction of legal insecurity are needed that might maximize the added value of nurse practitioners, physician assistants, and registered nurses., (© 2019 The Authors Nursing & Health Sciences Published by John Wiley & Sons Australia, Ltd.)

Background: Neuropsychiatric symptoms are common in nursing home residents with young-onset dementia and burdensome for nursing staff. It is known that neuropsychiatric symptoms are associated with burn-out complaints and low job satisfaction. An intervention aimed at decreasing neuropsychiatric symptoms in nursing home residents with young-onset dementia might also result in less burnout complaints and job demands and improve job satisfaction in nursing staff., Objectives: The aim was to evaluate the effect of the intervention on nursing staff burnout, job satisfaction and job demands., Design: Cluster randomised controlled trial using a stepped wedge design with a total duration of 18 months, with four assessments., Setting: Thirteen young-onset dementia special care units across the Netherlands were, by means of random allocation software, assigned to three groups crossing over at different time points., Participants: All nursing staff, in total 391, were invited to participate. 305 nursing staff participated during the course of the study of whom 71 participated in all assessments., Intervention: An educational program followed by a structured multidisciplinary care program aimed at the management of neuropsychiatric symptoms. The care program consists of evaluation of psychotropic drug prescription followed by detection, analysis, treatment and evaluation of treatment of neuropsychiatric symptoms., Methods: Emotional exhaustion, depersonalisation and personal accomplishment were assessed with the Utrecht Burnout Scale. Job satisfaction and job demands were assessed with subscales of the Leiden Quality of Work Questionnaire., Results: The baseline burnout risk on emotional exhaustion and personal accomplishment was average, and low on depersonalisation. The mean scores for job satisfaction were above average and for job demands average. Linear mixed models showed that the intervention had no effect on emotional exhaustion (estimated effect -0.04, 95% confidence interval -1.25 to 1.16), depersonalisation (estimated effect 0.24, 95% confidence interval -0.26 to 0.74), personal accomplishment (estimated effect -0.82, 95% confidence interval -1.86 to 0.22) job satisfaction (estimated effect -0.40, 95% confidence interval -0.98 to 0.17) and job demands (estimated effect -0.04, 95% confidence interval -0.57 to 0.49). A significant difference was found between registered nurses and other nursing staff on emotional exhaustion and job satisfaction. Compared to other staff members, registered nurses' emotional exhaustion scores slightly increased while job satisfaction slightly decreased when using the intervention., Conclusion: The intervention was not effective on three dimensions of burnout, job satisfaction and job demands. Staff scored positive on the outcomes of interest before implementation of the intervention, leaving little opportunity for improvement., (Copyright © 2019 Elsevier Ltd. All rights reserved.)

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., (© The Author(s) 2018. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)