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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]

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]

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]

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]

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]

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]

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

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

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

Objective: The aims of the current study are (1) to explore the differences in neuropsychiatric symptoms (NPS) between young-onset dementia (YOD) and late-onset dementia (LOD), and (2) to investigate whether the possible differences can be attributed to differences in dementia subtype, gender, psychotropic drug use (PDU), or dementia severity. Method: Three hundred and eighty-six nursing home (NH) residents with YOD and 350 with LOD were included. Multilevel modeling was used to compare NPS between the groups. Furthermore, dementia subtype, gender, PDU, and dementia severity were added to the crude multilevel models to investigate whether the possible differences in NPS could be attributed to these characteristics. Results: Higher levels of apathy were found in NH residents with YOD. After the characteristics were added to the models, also lower levels of verbally agitated behaviors were found in YOD. Conclusion: We recommend that special attention be paid to interventions targeting apathy in YOD. Although no differences in other NPS were found, the PDU rates were higher in YOD, suggesting that the threshold for the use of PDU in the management of NPS is lower. This underscores the need for appropriate attention to non-pharmacological interventions for the management of NPS in YOD. [ABSTRACT FROM AUTHOR]

Objectives: To determine psychotropic drug prescription rates in nursing home residents with dementia and to identify associations with the so far understudied psychosocial non-resident-related factors. Method: A cross-sectional, observational, exploratory design as part of PROPER I (PRescription Optimization of Psychotropic drugs in Elderly nuRsing home patients with dementia). Participants were 559 nursing home residents with dementia, 25 physicians, and 112 nurses in the Netherlands. Psychotropic drug prescription, non-resident-related and known resident-related variables were measured to operationalize the themes of our previous qualitative analysis. Results: Fifty-six percent of residents were prescribed any psychotropic drug, 25% antipsychotics, 29% antidepressants, 15% anxiolytics, and 13% hypnotics, with large differences between the units. Multivariate multilevel regression analyses revealed that antipsychotic prescription was less likely with higher physicians’ availability (odds ratio 0.96, 95% confidence interval 0.93-1.00) and that antidepressant prescription was more likely with higher satisfaction of nurses on resident contact (odds ratio 1.50, 95% confidence interval 1.00-2.25). Resident-related factors explained 6%-15% of the variance, resident- and non-resident-related factors together 8%-17%. Conclusion: Prescription rates for antipsychotics are similar compared to other countries, and relatively low for antidepressants, anxiolytics, and hypnotics. Our findings indicate that improvement of prescribing could provisionally best be targeted at resident-related factors. [ABSTRACT FROM AUTHOR]

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

Background: 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]