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Conceptualize successful treatment of persons with dementia and severe challenging behavior as perceived by professionals. 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. 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. 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. [ABSTRACT FROM AUTHOR]

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. 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. 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. 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). [ABSTRACT FROM AUTHOR]

Objective: We studied the efficacy of biannual structured medication reviews to improve the appropriateness of psychotropic drug (PD) prescriptions for neuropsychiatric symptoms (NPS) in nursing home patients with dementia. Study Design and Setting: In this randomised controlled trial, the intervention encompassed a structured multidisciplinary medication review by physician, pharmacist and nurse. During this 18-month study, the patient's medical files were assessed every 6 months. The primary outcome was the appropriateness of PD prescriptions defined by the Appropriate Psychotropic drug use In Dementia (APID) index sum score, lower scores indicating more appropriate use. Results: At baseline, 380 patients were included, of which 222 were randomised to the intervention group. Compared to the control group, the APID index sum score in the intervention group improved significantly for all PD prescriptions (-5.28, P = 0.005). Conclusion: We advise the implementation of a structured, repeated medication review with the essential roles of pharmacist, physician and nurse, into daily practice. This work was supported and funded by the Netherlands Organisation for Health Research and Development (ZonMw). Netherlands Trial Register (NTR3569). [ABSTRACT FROM AUTHOR]

Objectives To assess neuropsychiatric symptoms and quality of life in a group of patients in the final phase of dementia. Methods All patients with dementia (n = 216) residing on dementia special care units of two Dutch nursing homes were included in the study provided they met the criteria for the final phase of dementia. Neuropsychiatric symptoms were assessed with the Neuropsychiatric Inventory Nursing Home version (NPI-NH) and the Cohen Mansfield Agitation Inventory (CMAI). Quality of life was assessed with the QUALIDEM Results Of the 216 dementia patients 39 met the criteria for the final phase of dementia. The patients showed a specific pattern of behaviours with a high prevalence of apathy, agitation and behaviours that were mainly observed during morning care such as making strange noises, grabbing, performing repetitious mannerism, spitting, hitting, screaming and pushing. Overall quality of life of these patients in the final phase of dementia was moderate. Conclusion In this small sample, patients in the final phase of dementia show specific behavioural problems, that mainly should be addressed with psychosocial interventions. Copyright © 2008 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Objectives To investigate the causes of death in nursing home patients with dementia, and to compare causes of death in patients who survive until the final phase of dementia with those who die before reaching that phase, adjusted for potential confounders. Design Observational analysis of a cohort of patients with a prospective follow-up. Setting Psychogeriatric nursing home ‘Joachim en Anna’ in Nijmegen, the Netherlands. Participants Eight hundred and ninety dementia patients admitted between 1980 and 1989. All patients were followed until death. Measurements The final phase of dementia was defined as total impairment on 20 items of a functional status questionnaire. Immediate causes of death (part 1a of the Dutch death certificate) were classified by the International Classification of Health Problems in Primary Care. Results The three most important reported immediate causes of death were cachexia/dehydration (35.2%), cardio-vascular disorders (20.9%) and acute pulmonary diseases (20.1%), mainly pneumonia. Cachexia/dehydration was particularly common as a cause of death of patients who survived to the final phase (53.2%); survival to the final phase of dementia was an independent predictor of cachexia/dehydration as an immediate cause of death with reference to cardiovasculair disorders in multinomial regression adjusted for age at death, gender, and type of dementia. Conclusion Patients who survive to the final phase of dementia are more likely to die from cachexia or dehydration than those who die before. The findings contribute to a debate on what should be reported as the immediate cause of death in dementia including perspectives from a palliative care viewpoint. Copyright © 2006 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

The prevalence of neuropsychiatric symptoms and the influence of predictive factors in cognitively impaired nursing home patients were reviewed. Articles were identified by means of a MEDLINE and PsychInfo literature search. Neuropsychiatric symptoms were present in more than 80% of the cognitively impaired patients. Prevalences ranged considerably, from 3% to 54% for delusions, 1% to 39% for hallucinations, 8% to 74% for depressed mood, 7% to 69% for anxiety, 17% to 84% for apathy, 48% to 82% for aggression or agitation, and 11% to 44% for physical aggression. Neuropsychiatric symptoms seemed to be predicted not only by dementia type or stage but also by the psychosocial environment and the amount of psychoactive medication and physical restraints used. Neuropsychiatric symptoms are common and influenced by both the disease itself and the psychosocial environment of the institutional setting. The latter may have important consequences for staff planning and education and the future design of care facilities. [ABSTRACT FROM AUTHOR]

OBJECTIVES: To investigate the determinants of survival to late dementia in Dutch nursing home patients. DESIGN: Observational analysis of a cohort of patients with a prospective follow-up. SETTING: Psychogeriatric nursing home “Joachim en Anna” in Nijmegen, the Netherlands. PARTICIPANTS: Dementia patients from a psychogeriatric nursing home admitted between 1980 and 1989. MEASUREMENTS: All patients were followed until death. Age, sex, severity of dementia on admission, and type of dementia were analyzed as determinants of survival to late dementia. Late dementia was operationally defined as total impairment on 20 items of the functional status questionnaire. RESULTS: The mean disease duration of the study population was 7.0 years, with a wide range. Some died soon after dementia was diagnosed, whereas others lived for more than 25 years after onset of the disease. One hundred twenty-six patients (14.2%) reached the phase of late dementia, most of whom were women (90%) with Alzheimer's disease (60%). For most of the patients, this phase lasted 1 year or less. Age, sex, type of dementia, and severity of dementia on admission all contributed significantly to predicting survival to late dementia. CONCLUSION: One of seven nursing home patients with dementia survived to late dementia. Nursing home physicians can use these findings to inform relatives about the prognosis. J Am Geriatr Soc 51:184–187, 2003. [ABSTRACT FROM AUTHOR]

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. 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. 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. 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. [ABSTRACT FROM AUTHOR]

Background: General practitioners (GPs) are advised to offer advance care planning (ACP) to people with dementia (PWD). In a randomized controlled trial, an educational intervention for GPs aimed at initiating and optimizing ACP proved to be effective. During the intervention most GPs were accompanied by their practice nurse (PN). To provide insights into the intervention's successful components and what could be improved, we conducted a process evaluation and explored implementation, mechanisms of impact and contextual factors. Methods: We used the Medical Research Council guidance for process evaluations. Implementation was explored identifying reach and acceptability. We performed descriptive analyses of participants' characteristics; selection, inclusion and intervention attendance; a GP post-intervention survey on initiating ACP; a post intervention focus group with trainers of the intervention. Mechanisms of impact were explored identifying adoption and appropriateness. We used: participants' intervention ratings; a GP post-intervention survey on conducting ACP; ACP documentation in PWD's medical files; post-intervention interviews with PWD/FC dyads. All data was used to identify contextual factors. Results: The intervention was implemented by a small percentage of the total Dutch GP population invited, who mostly included motivated PWD/FC dyads with relatively little burden, and PWD with limited cognitive decline. The mechanisms of impact for GPs were: interactively learning to initiate ACP with training actors with a heterogeneous group of GPs and PNs. For PWD/FCs dyads, discussing non-medical preferences was most essential regarding their SDM experience and QoL. Some dyads however found ACP stressful and not feasible. Younger female GPs more often initiated ACP. Male PWD and those with mild dementia more often had had ACP. These characteristics and the safe and intimate training setting, were important contextual facilitators. Conclusion: We recommend Interventions aimed at improving ACP initiation with PWD by GPs to include interactive components and discussion of non-medical preferences. A safe environment and a heterogeneous group of participants facilitates such interventions. However, in practice not all FC/PWD dyads will be ready to start. Therefore, it is necessary to check their willingness when ACP is offered. [ABSTRACT FROM AUTHOR]

Although dementia has a profound impact in general, young-onset dementia causes additional problems and challenges as people are affected in their prime years. Awareness has increased that people with young-onset dementia and their families have specific care needs and dedicated services are necessary to accommodate those needs. However, in many countries, age-appropriate care and support for people with young-onset dementia is still largely unavailable. In this special article, barriers as well as facilitators for the development of postdiagnostic care and support in young-onset dementia are addressed. Drawing from the experiences in the Netherlands, the establishment of an appropriate infrastructure has proven a corner stone in service development in young-onset dementia. The establishment of a center at the national level for the development and dissemination of knowledge and affiliated regional centers that coordinate and offer care and support at the regional level has helped to reimagine, redefine, but more importantly also rearrange, postdiagnostic care and support in young-onset dementia in the Netherlands. This has resulted in care standards for service provision in young-onset dementia that have been incorporated in the dementia standard at the national level. Also, a quality hallmark has been developed to guide the arrangement of age-appropriate services at the local level. Moreover, specific training programs are in place for health care professionals involved in young-onset dementia. To be able to prioritize topics in research for the upcoming years, a scientific agenda has been established. The strong collaboration between organizations that provide a voice for people with dementia, care providers and research centers, that all strive to support people to live well with young-onset dementia has boosted these developments and may inspire other countries searching for ways to improve postdiagnostic care and support in young-onset dementia. [ABSTRACT FROM AUTHOR]

An introduction is presented in which the editor discusses various reports within the issue on topics including pain management and therapy for older people, polypharmacy, and drug-drug interactions caused by pharmacodynamic and pharmacokinetic interactions.

A letter to the editor is presented concerning the article ""Nursing home physician specialists: A response to the workforce crisis in long-term care," by P.R. Katz, J. Karuza, O. Intrator, and others in a previous issue.

Advance care planning (ACP) is seldom initiated with people with dementia (PWD) and mainly focuses on medical end-of-life decisions. We studied the effects of an educational intervention for general practitioners (GPs) aimed at initiating and optimizing ACP, with a focus on discussing medical and nonmedical preferences of future care. A single-blinded cluster randomized controlled trial. In 2016, 38 Dutch GPs (all from different practices) completed the study. They recruited 140 PWD, aged ≥65 years at any stage and with any type of dementia, from their practice. Intervention group GPs were trained in ACP, including shared decision-making and role-playing exercises. Control group GPs provided usual care. The primary outcome was ACP initiation: the proportion of PWD that had at least 1 ACP conversation documented in their medical file. Key secondary outcomes were the number of medical (ie, resuscitation, hospital admission) and nonmedical (ie, activities, social contacts) preferences discussed. At the 6-month follow-up, subjects' medical records were analyzed using random effect logistics and linear models with correction for GP clustering. 38 GP clusters (19 intervention; 19 control) included 140 PWD (intervention 73; control 67). Four PWD (2.9%) dropped out on the primary and key secondary outcomes. After 6 months, intervention group GPs initiated ACP with 35 PWD (49.3%), and control group GPs initiated ACP with 9 PWD (13.9%) [odds ratio (OR) 1.99; P =.002]. Intervention group GPs discussed 0.8 more medical [95% confidence interval (CI) 0.3, 1.3; P =.003] and 1.5 more nonmedical (95% CI 0.8, 2.3; P <.001) preferences per person with dementia than control group GPs. Our educational intervention increased ACP initiation, and the number of nonmedical and medical preferences discussed. This intervention has the potential to better align future care of PWD with their preferences but because of the short follow-up, the GPs' long-term adoption remains unknown. [ABSTRACT FROM AUTHOR]

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). 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). 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. 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Relocations within and between nursing homes often induce stress, anxiety, and depression in residents and cause additional workload for and burnout in staff. To prevent this, many nursing homes deploy pre-transition initiatives, bridging initiatives, and post-transition initiatives to support residents and staff during the relocation process. As little is known about these initiatives, this study aims to explore the pre-relocation, bridging and post-relocation initiatives used for relocations within and between nursing homes. Methods: In seven Dutch nursing homes, eight focus groups were conducted with two to six participants (N = 37) who were actively involved in relocation processes in different roles (i.e., managers, healthcare professionals, support staff, client council members, residents and family). The focus groups were conducted based on a predefined topic list and lasted approximately 60 min. The transcripts were recorded, transcribed verbatim and analysed using thematic coding. Results: Nursing homes had to be inventive in developing relocation initiatives as neither shared guidelines nor knowledge exchange on this topic were available. A total of thirty-seven relocation initiatives were identified in these seven nursing homes. Nineteen pre-relocation initiatives were identified, of which eight emphasized information and engagement, three highlighted training and practice and eight stressed orientation and visualization. Seven bridging initiatives were identified, of which four emphasized coordination and continuity and three highlighted entertainment and celebration. Eleven post-relocation initiatives were identified, of which seven emphasized evaluation and troubleshooting and four highlighted change and adjustment. Conclusion: The identified relocation initiatives were developed unassisted by nursing homes, due to a lack of shared guidelines, knowledge exchange and mutual learning on this topic. Therefore, it may be expedient and more effective to develop general guidelines for relocations within and between nursing homes in collaboration with nursing homes. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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

The authors propose the implementation of a comprehensive geriatric assessment as the cornerstone and input for a multidisciplinary, problem-oriented care plan in order to improve the role of physicians in the changing culture of nursing homes in the Netherlands. The objectives of the care plan, according to the authors, are improvement or preservation of the quality of life and functional independence. The authors believe that nursing homes need a specially trained physician who will care for patients.

Background: Due to the disease’s progressive nature, advance care planning (ACP) is recommended for people with early stage dementia. General practitioners (GPs) should initiate ACP because of their longstanding relationships with their patients and their early involvement with the disease, however ACP is seldom applied. Aim: To determine the barriers and facilitators faced by GPs related to ACP with people with dementia. Data sources: We systematically searched the relevant databases for papers published between January 1995 and December 2016, using the terms: primary healthcare, GP, dementia, and ACP. We conducted a systematic integrative review following Whittemore and Knafl’s method. Papers containing empirical data about GP barriers and/or facilitators regarding ACP for people with dementia were included. We evaluated quality using the Mixed-Method-Appraisal-Tool and analyzed data using qualitative content analysis. Results: Ten qualitative, five quantitative, and one mixed-method paper revealed four themes: timely initiation of ACP, stakeholder engagement, important aspects of ACP the conversation, and prerequisites for ACP. Important barriers were: uncertainty about the timing of ACP, how to plan for an uncertain future, lack of knowledge about dementia, difficulties assessing people with dementia’s decisional capacities, and changing preferences. Facilitators for ACP were: an early start when cognitive decline is still mild, inclusion of all stakeholders, and discussing social and medical issues aimed at maintaining normal life. Conclusion: Discussing future care is difficult due to uncertainties about the future and the decisional capacities of people with dementia. Based on the facilitators, we recommend that GPs use a timely and goal-oriented approach and involve all stakeholders. ACP discussions should focus on the ability of people with dementia to maintain normal daily function as well as on their quality of life, instead of end-of-life-discussions only. GPs need training to acquire knowledge and skills to timely initiate collaborative ACP discussions. [ABSTRACT FROM AUTHOR]

Aims To evaluate the effects of substituting nurse practitioners, physician assistants or nurses for physicians in long-term care facilities and primary healthcare for the ageing population (primary aim) and to describe what influences the implementation (secondary aim). Background Healthcare for the ageing population is undergoing major changes and physicians face heavy workloads. A solution to guarantee quality and contain costs might be to substitute nurse practitioners, physician assistants or nurses for physicians. Design A systematic literature review. Data sources PubMed, EMBASE, CINAHL, Psyc INFO, CENTRAL, Web of Science; searched January 1995-August 2015. Review methods Study selection, data extraction and quality appraisal were conducted independently by two reviewers. Outcomes collected: patient outcomes, care provider outcomes, process of care outcomes, resource use outcomes, costs and descriptions of the implementation. Data synthesis consisted of a narrative summary. Results Two studies used a randomized design and eight studies used other comparative designs. The evidence of the two randomized controlled trials showed no effect on approximately half of the outcomes and a positive effect on the other half of the outcomes. Results of eight other comparative study designs point towards the same direction. The implementation was influenced by factors on a social, organizational and individual level. Conclusion Physician substitution in healthcare for the ageing population may achieve at least as good patient outcomes and process of care outcomes compared with care provided by physicians. Evidence about resource use and costs is too limited to draw conclusions. [ABSTRACT FROM AUTHOR]

Objective: This study aimed to assess the degree of implementation and barriers encountered in the use of a practice guideline for optimal symptom relief for patients with dementia and pneumonia in Dutch nursing homes.Methods: A process evaluation included assessment of reach, fidelity, and dose delivered using researcher's observations, and dose received was addressed in a question "use of the practice guideline," which the physicians completed for each patient included in the study. Perceived barriers were assessed with a structured questionnaire (response 69%) and semi-structured interviews (n = 14), which were subject to qualitative content analysis.Results: Of the 55 physicians involved in the intervention phase, 87% attended an implementation meeting; 20 physicians joined the study later (reach). The intervention was implemented as planned, and all intervention components were delivered by the researchers (fidelity and dose delivered). Thirty-six physicians included 109 patients. For 81% of the patients, the treating physician stated to have used the guideline (dose received). The guideline was perceived as providing a good overview of current practice, but some physicians had expected a more directive protocol or algorithm. Further, recommended regular observations of symptoms were rarely performed. Physician's often felt that "this is not different from what we usually do," and with the acute illness, there was not always enough time to (re)familiarize with the contents.Conclusions: The physicians used the practice guideline frequently despite important barriers. Future implementation may involve strategies such as multiple interactive meetings. Further, the greatest potential to alter usual practice should be emphasized, such as using observational instruments. Copyright © 2016 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Background: Timely diagnosis and adequate care is important for persons with young-onset dementia (YOD) and their caregivers, due to the high impact of the disease. Initiating care can be difficult for the general practitioner (GP) and other healthcare professionals. Objective: Provide insight in the care use of persons with YOD and identify factors influencing care use. Methods: A primary care register was used for this study. Information on the care use of persons with YOD was extracted from the GPs written notes. Information entailed time until start of care use, reasons and factors influencing the GP's decision, and reasons and factors influencing actual care use were included. Analyses included quantitative explorative descriptive analyses, and qualitative manifest content analyses. Results: 75 persons with YOD were included in this study. The main reason for GPs to refer for diagnosis was concerns of caregivers. After diagnosis, 72% of the persons were assigned a case manager, 42.7% received day care, and 44% were admitted to a long-term care facility. A higher percentage of persons without a case manager was admitted to a long-term care facility (64%) compared to the persons with a case manager (36%). Reasons for not initiating care were reluctancy of the persons with YOD or their caregivers, the person deceased, or because the GP did not refer for care. Conclusion: Care use differed between persons due to different needs and reasons. Although most persons with YOD receive care in the years after diagnosis, there are still factors that could be improved. [ABSTRACT FROM AUTHOR]

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

Background: Timely diagnosis and adequate care is important for persons with young-onset dementia (YOD) and their caregivers, due to the high impact of the disease. Initiating care can be difficult for the general practitioner (GP) and other healthcare professionals. Objective: Provide insight in the care use of persons with YOD and identify factors influencing care use. Methods: A primary care register was used for this study. Information on the care use of persons with YOD was extracted from the GPs written notes. Information entailed time until start of care use, reasons and factors influencing the GP's decision, and reasons and factors influencing actual care use were included. Analyses included quantitative explorative descriptive analyses, and qualitative manifest content analyses. Results: 75 persons with YOD were included in this study. The main reason for GPs to refer for diagnosis was concerns of caregivers. After diagnosis, 72% of the persons were assigned a case manager, 42.7% received day care, and 44% were admitted to a long-term care facility. A higher percentage of persons without a case manager was admitted to a long-term care facility (64%) compared to the persons with a case manager (36%). Reasons for not initiating care were reluctancy of the persons with YOD or their caregivers, the person deceased, or because the GP did not refer for care. Conclusion: Care use differed between persons due to different needs and reasons. Although most persons with YOD receive care in the years after diagnosis, there are still factors that could be improved. [ABSTRACT FROM AUTHOR]

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

Background: Young-onset dementia (YOD) has many underlying etiologies, leading to a large heterogeneity in first symptoms. This makes it difficult for general practitioners (GPs) to recognize YOD.Objective: Identify early symptoms that are more common in the pre-diagnostic phase of YOD.Methods: We performed a case-control study nested in a primary-care registry on 89 cases and 162 matched controls, where we compared symptoms of people with YOD up to 5 years before diagnosis to their matched control group without YOD. The variables included in this study were International Classification of Primary Care codes and symptoms extracted from written GP notes and categorized in groups. We used Generalized Equation Estimation to analyze symptom's time-trajectories and logistic regression and ROC-curves to analyze differences in number of symptom categories reported.Results: Cognitive symptoms were more common in people with YOD 5 years before diagnosis, affective symptoms 4 years before diagnosis, social symptoms 3 years, behavioral symptoms 2 years, and daily functioning disturbances 1 year before diagnosis. The ROC-curve suggested that reporting two or more symptom categories at the GP gave the best trade-off between sensitivity (85%) and specificity (77%), for the highest percentage of correctly diagnosed persons.Conclusion: This study showed people with YOD present differently than people without YOD. However, it may still be difficult for GPs to use these symptom categories to distinguish people with YOD, since the symptoms also occur in people with other diseases. A combination of reported symptom categories increases the probability of an underlying cause of YOD. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. A qualitative multiple case study with semistructured interviews. 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. Transcripts of individual interviews were analyzed using largely double and independent open and axial coding, and formulation of themes and subthemes. 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). 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. [ABSTRACT FROM AUTHOR]

Objective: Several European studies investigated the trends in psychotropic drug prescriptions (PDPs) among nursing home (NH) residents and reported a decline in antipsychotics prescriptions. Since the Dutch long-term care system differs from other European systems (e.g. higher threshold for NH admission and trained elderly care physicians), this study explores the trends in PDPs in Dutch NH residents with dementia.Methods: The study used data from nine studies, comprising two cross-sectional studies, one cohort study, and six cluster-randomized controlled trials, collected in Dutch NHs between 2003 and 2018. With multilevel logistic regression analysis, NHs as a random effect, we estimated the trends in PDPs overall and for five specific psychotropic drug groups (antipsychotics, antidepressants, anxiolytics, hypnotics, and anti-dementia drugs), adjusting for confounders: age, gender, severity of dementia, severity of neuropsychiatric symptoms, and length of stay in NHs.Results: The absolute prescription rate of antipsychotics was 37.5% in 2003 and decreased (OR = 0.947, 95% CI [0.926, 0.970]) every year. The absolute prescription rate of anti-dementia drugs was 0.8% in 2003 and increased (OR = 1.162, 95% CI [1.105, 1.223]) per year. The absolute rate of overall PDPs declined from 62.7% in 2003 to 40.4% in 2018.Conclusions: Among Dutch NH residents with dementia, the odds of antipsychotics prescriptions decreased by 5.3% per year while the odds of anti-dementia drug prescriptions increased by 16.2%. There were no distinct trends in antidepressants, anxiolytics, and hypnotics prescriptions. However, overall PDPs were still high. The PDPs in NH residents remain an issue of concern. [ABSTRACT FROM AUTHOR]

Objectives: Dementia at a young age differs from late onset dementia in pathology and care needs. This requires further research to improve the understanding of this group, support and service provision. Aim of current study is to reach consensus on the terminology and operational definition (i.e., age-related criteria and possible causes) of dementia at a young age, to aid further research.Methods: A classical Delphi technique was used to transform opinions into group consensus by using an online survey. In three rounds statements regarding (1) terminology, (2) age-related criteria, and (3) aetiologies that can be considered as causes of dementia at a young age were sent to international experts in the field to give their opinions and additional comments on the statements.Results: Forty-four experts responded and full consensus was reached on 22 out of 35 statements. Young-onset dementia emerged as the term of preference. Provisional consensus was found for the use of age 65 at symptom onset as preferred cut-off age. Consensus was reached on the inclusion of 15 out of 22 aetiologies and categories of aetiologies as potential cause for dementia at a young age.Conclusions: A clear term and operational definition have been reached. Although beneficial for conducting future research to gain more insight in pathology and care needs of young people living with dementia, still consensus about some details is lacking. To reach consensus about these details and implications for use in research and clinical practice, the organisation of an in person consensus meeting is advised. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objective: Although antipsychotics are important in the treatment of behavioural and psychological symptoms of dementia (BPSD), they have moderate efficacy and often cause adverse events. Recent safety warnings about increased frequency of cerebrovascular adverse events in elderly patients who use atypical antipsychotics mean that physicians now face a dilemma when weighing the benefits and risks of use of antipsychotics in this patient group. This study systematically reviews the reporting of adverse events of antipsychotics used to treat BPSD in randomised, controlled trials (RCTs). Methods: We searched the MEDLINE, EMBASE, PsychInfo and CINAHL databases (search period 1980 or 1986-April 2005) and the Cochrane controlled trials register (2005) for RCTs that used intention-to-treat analysis to evaluate the efficacy and harms of antipsychotics used to treat BPSD. Two independent reviewers assessed the reporting of adverse events. Results: Screening of 930 abstracts identified 12 eligible RCTs (2809 patients). Most participants were elderly people (mean age 80 years) with Alzheimer’s, vascular or mixed dementia. Studies lasted from 3 to 16 weeks. Adverse events, though common, were described heterogeneously and incompletely. No RCT fulfilled all Consolidated Standards of Reporting Trials requirements for the reporting of harms. Atypical antipsychotics caused fewer extrapyramidal symptoms and less somnolence than typical antipsychotics, but these differences disappeared when dosages were increased. Only one trial reported cerebrovascular adverse events, with a number needed to harm of 14 (95% CI 8, 41). Conclusions: At lower doses atypical antipsychotics may cause fewer adverse events in the treatment of BPSD, but there is uncertainty about their cerebrovascular safety profile. The RCTs included in this systematic review described adverse events too incompletely and heterogeneously to allow generation of clear treatment recommendations, and they do not provide sufficient evidence to support recent safety warnings. Better reporting on harms in RCTs is needed to enable rational treatment decisions with respect to use of antipsychotics for BPSD. [ABSTRACT FROM AUTHOR]

Objective : To clarify characteristics of long-term care and treatment of patients in a vegetative state. Design : Qualitative, descriptive study in a Dutch nursing home. Methods : Review of clinical records of patients in a vegetative state after acute brain damage between 1978-2002. Results : Five patients received intensive care of a multi-disciplinary team and showed considerable co-morbidity. There was no standard scenario for end-of-life decisions. Physicians play a more proactive role by evaluating the total medical treatment instead of withholding therapy in case of incidental complications. The families' attitude is a crucial factor in their ultimate decision. Conclusions : There is no standard solution to alleviate the fate of patients in a vegetative state and their families. Withdrawing all medical treatment, including artificial nutrition and hydration, can be an acceptable scenario for letting the patient die. More research is needed to identify the factors that contribute to acceptance of the physician's decision by the family. [ABSTRACT FROM AUTHOR]

Background: There has been growing interest in young people living with dementia. Future research requires consensus on the terminology and operational definition of this group.Objective: The purpose of this integrative review was to explore and include all operational definitions used to define dementia at a young age.Methods: On August 14, 2020, the PubMed, Embase, Cinahl, and PsycInfo databases were searched for empirical and theoretical literature using Google. Various terms to describe and define 'dementia' and 'at a young age' were used to collect literature concerning terminology; age-related aspects, including cut-off ages and criteria; and etiologies of dementia at a young age.Results: The search yielded 6,891 empirical and 4,660 theoretical publications, resulting in the inclusion of 89 publications, including 36 publications containing an explicit discussion and 53 publications as confirmation. 'Young-onset dementia' was the most commonly used term of seven identified terms, in the last two decades. The age of 65 years at symptom onset was used most frequently when considering a total of six upper age limits and four criteria to define a cut-off age. Eight lower age limits and an option for subdivision based on age were included. We identified 251 different etiologies and 27 categories of etiologies.Conclusion: Despite relative consensus on the term young-onset dementia and an age at symptom onset being used as a cut-off criterion, much is still unclear concerning possible etiologies of dementia at a young age. In the current study, controversies were detected for discussion in an international consensus study. [ABSTRACT FROM AUTHOR]

We investigated the 2-week prevalence and correlates of very frequent physical aggression (PA) and vocalizations in nursing home (NH)-residents with dementia. 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. 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). 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. [ABSTRACT FROM AUTHOR]

Aims: Establishing the prevalence of inappropriate sexual behaviour, concurrent challenging behaviours and the determinants of inappropriate sexual behaviour among patients with acquired brain injury ≤65 years of age in Dutch nursing homes. Design: Cross‐sectional, observational study in acquired brain injury special care units spreads throughout the country. Methods: Nursing homes were recruited through the national expertise network for patients with severe acquired brain injury, regional brain injury teams and by searching the Internet. Patient characteristics were collected through digital questionnaires. Inappropriate sexual behaviour was assessed with the St. Andrews Sexual Behaviour Assessment, concurrent challenging behaviours with the NeuroPsychiatric Inventory‐Nursing Home Version and the Cohen‐Mansfield Agitation Inventory, cognition with the Mini‐Mental State Examination and activities of daily living with the Disability Rating Scale. Psychotropic drug use was retrieved from the electronic prescription system. Associations between determinants and inappropriate sexual behaviour were examined using multilevel multivariate linear regression model analyses. Data collection started in June 2017 and ended in April 2019. Results: Of the 118 included patients, 38.1% had one or more inappropriate sexual behaviours. Verbal comments (30.1%) and non‐contact behaviour (24.8%) were the most prevalent types of inappropriate sexual behaviour. Less severe behaviours were more common than more severe behaviours. The most frequent concurrent challenging behaviours were agitation, aggression and hyperactivity. Physical aggression was associated with more inappropriate sexual behaviour. Being married and pain were associated with less inappropriate sexual behaviour. Conclusion: Inappropriate sexual behaviour is prevalent in patients with acquired brain injury ≤65 years of age residing in nursing homes. Impact: Inappropriate sexual behaviour may have impact not only on the patients themselves but also on nursing staff. Insight into the magnitude, severity, course and concurrent challenging behaviours, sexuality and quality of life could give direction to the kind of interventions and education that is needed. The ultimate goal is to develop appropriate care for this vulnerable group of patients, specifically psychosocial interventions and appropriate use of psychotropic drugs. [ABSTRACT FROM AUTHOR]

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. 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. 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. 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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

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]

Background: Treatment of patients with late-stage parkinsonism is often sub-optimal. Objective: To test the effectiveness of recommendations by a movement disorder specialist with expertise in late-stage parkinsonism. Methods: Ninety-one patients with late-stage parkinsonism considered undertreated were included in apragmatic a pragmatic multi-center randomized-controlled trial with six-month follow-up. The intervention group received a letter with treatment recommendations to their primary clinician based on an extensive clinical assessment. Controls received care as usual. The primary outcome was the Unified Parkinson Disease Rating Scale (UPDRS)part-II (Activities of Daily Living). Other outcomes included quality-of-life (PDQ-8), mental health (UPDRS-I), motor function (UPDRS-III), treatment complications (UPDRS-IV), cognition (Mini-mental-state-examination), non-motor symptoms (Non-Motor-Symptoms-scale), health status (EQ-5D-5L) and levodopa-equivalent-daily-dose (LEDD). We also assessed adherence to recommendations. In addition to intention-to-treat analyses, a per-protocol analysis was conducted. Results: Sample size calculation required 288 patients, but only 91 patients could be included. Treating physicians followed recommendations fully in 16 (28%) and partially in 21 (36%) patients. The intention-to-treat analysis showed no difference in primary outcome (between-group difference = –1.2, p = 0.45), but there was greater improvement for PDQ-8 in the intervention group (between-group difference = –3.7, p = 0.02). The per-protocol analysis confirmed these findings, and showed less deterioration in UPDRS-part I, greater improvement on UPDRS-total score and greater increase in LEDD in the intervention group. Conclusions: The findings suggest that therapeutic gains may be reached even in this vulnerable group of patients with late-stage parkinsonism, but also emphasize that specialist recommendations need to be accompanied by better strategies to implement these to further improve outcomes. [ABSTRACT FROM AUTHOR]

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. A mixed-methods cross-sectional study was conducted. 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. A mixed-methods cross-sectional study was conducted, consisting of questionnaire, telephone interviews, analyses of documentation (ie, local visiting protocols), and a WhatsApp group. 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. 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. [ABSTRACT FROM AUTHOR]

Background: Late‐stage parkinsonism and Parkinson's disease (PD) are insufficiently studied population. Although neuropsychiatric symptoms (eg, psychosis, depression, anxiety, behavioral problems) are frequently present, their prevalence and clinical predictors remain unknown. Objective: To determine the prevalence and predictors of neuropsychiatric symptoms in late‐stage PD. Methods: We conducted a multinational study of patients with PD with ≥7 years disease duration and either a Hoehn and Yahr stage ≥4 or a Schwab and England score ≤ 50% in the on stage. Neuropsychiatric symptoms were assessed through interviews with carers using the Neuropsychiatric Inventory, with a frequency × severity score ≥ 4, indicating clinically relevant symptoms. The determinants analyzed were demographic characteristics, medication, and motor and nonmotor symptoms. Univariate and multivariate logistic analyses were performed on predictors of clinically relevant neuropsychiatric symptoms. Results: A total of 625 patients were recruited in whom the Neuropsychiatric Inventory could be completed. In 92.2% (576/625) of the patients, at least 1 neuropsychiatric symptom was present, and 75.5% (472/625) had ≥1 clinically relevant symptom. The most common clinically relevant symptoms were apathy (n = 242; 38.9%), depression (n = 213; 34.5%), and anxiety (n = 148; 23.8%). The multivariate analysis revealed unique sets of predictors for each symptom, particularly the presence of other neuropsychiatric features, cognitive impairment, daytime sleepiness. Conclusion: Neuropsychiatric symptoms are common in late‐stage PD. The strongest predictors are the presence of other neuropsychiatric symptoms. Clinicians involved in the care for patients with late‐stage PD should be aware of these symptoms in this specific disease group and proactively explore other psychiatric comorbidities once a neuropsychiatric symptom is recognized. [ABSTRACT FROM AUTHOR]