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Aim: Establishing the prevalence of neuropsychiatric symptoms (NPS), quality of life and psychotropic drug use in people aged ≤65 years with acquired brain injury in nursing homes. Design: Cross‐sectional, observational study among patients aged 18–≤65 years with acquired brain injury admitted to special care units in Dutch nursing homes. Methods: According to the Committee on Research Involving Human Subjects in January 2017 this study did not require ethics approval. Nursing homes will be recruited through the national acquired brain injury expertise network for patients with severe brain injury, the regional brain injury teams and by searching the internet. Patient characteristics will be collected through digital questionnaires. Neuropsychiatric symptoms will be assessed with the NeuroPsychiatric Inventory‐Nursing Home version, the Cohen–Mansfield Agitation Inventory and the St. Andrews Sexual Behaviour Assessment; cognition with the Mini‐Mental State Examination, quality of life with the Quality of Life after Brain Injury Overall Scale and activities of daily living with the Disability Rating Scale. Medication will be retrieved from the electronic prescription system. Data collection commenced in 2017 and will be followed by data analysis in 2019. Reporting will be completed in 2020. Discussion: Little is known about NPS among patients with acquired brain injury in nursing homes. In patients up to the age of 65 years, only six studies were found on prevalence rates of NPS. Impact: Patients with severe acquired brain injury experience lifelong consequences, that have a high impact on them and their environment. Although there is increasing attention for the survival of this vulnerable group of patients, it is also important to enlarge awareness on long‐term consequences, specifically the NPS, quality of life and psychotropic drug use in acquired brain injury. Insight into the magnitude of these issues is necessary to achieve appropriate care for these patients. [ABSTRACT FROM AUTHOR]

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

Background: The significance of advance care planning in dementia is widely acknowledged. Despite the suggestion that younger people with dementia and their family might have distinct needs and preferences in this area, studies on advance care planning in young-onset dementia are absent. Aim: We aim to explore (1) whether family caregivers had already engaged in advance care planning with patients and/ or professionals and the accompanying reasons and (2) family caregivers' preferences for how to ideally engage in the process with patients, family and professionals. Design: A qualitative study was conducted: we analysed semi-structured interviews (n = 15) through the method of constant comparative analysis. Setting/participants: We included Flemish family caregivers of persons with young-onset dementia. Results: Plans for the future typically concerned non-medical affairs. Participants' limited engagement in advance care planning was clarified through several reasons: not considering it useful, hindering patient behaviour, adopting a day-to-day attitude, caregivers emotionally protecting themselves and uncertainty about patients' cognitive competence. However, endorsement for advance care planning showed from respondents' preferences that it should be initiated timely, by a third party, and emphasize patients' remaining capacities. Finally, the need for information and high-quality care emerged. Conclusion: A gap of knowledge, of information and in care intertwiningly hinder advance care planning. In young-onset dementia, engaging in advance care planning is not an option equally accessible as not doing so. Policy makers, institutions and professionals could reflect on their responsibility in providing these patients and caregivers an actual choice to engage in advance care planning or not. [ABSTRACT FROM AUTHOR]

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

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

Objectives: Neuropsychiatric symptoms (NPSs) in dementia patients in nursing homes are common and often treated with psychotropic drugs. Thus far, studies on psychotropic drug use (PDU) mainly focused on elderly patients with dementia. It is important to know the prevalence and correlates of PDU in patients with young‐onset dementia (YOD) to optimize NPS treatment and reduce excess PDU in this group. Design The Behavior and Evolution in Young‐Onset Dementia (BEYOnD) study is a cross‐sectional study in 230 residents with YOD in eight nursing homes providing specialized YOD care. PDU was registered from medical charts. The influence of age, gender, severity, and type of dementia, NPS, and agitation on PDU was analyzed. Results: Eighty‐seven percent of the residents used psychotropic drugs, and 47% used two or more psychotropic drugs. No significant associations with age, gender, dementia subtype, and dementia severity were found. Depressive symptoms showed an association with the use of antidepressants, nighttime behavior with use of hypnotics, and verbal agitation with antipsychotics. Apathy was strongly associated with lower PDU. Conclusions: Nursing home patients with YOD have a high prevalence of PDU. The association with NPS raises questions of efficacy of these drugs in managing NPS. Patients with apathy had a lower chance of using psychotropics. More research on indications and effects of psychotropic drugs is needed, as well as on (nonpharmacological) alternatives for managing challenging behavior in YOD. [ABSTRACT FROM AUTHOR]

Background: During the course of dementia, most people develop some type of neuropsychiatric symptoms (NPS), which result in lower quality of life, high caregiver burden, psychotropic drug use and a major risk of institutionalization. Studies on NPS in people with dementia have been mainly conducted in clinical centres or psychiatric services.Objectives: To investigate the course of NPS in people with dementia in primary care.Methods: Analysis of (cumulative) prevalence and incidence, persistence and resolution based on data collected during an assessment at home of a prospective naturalistic cohort study in primary care in a sample of 117 people with dementia and their informal caregivers. Subsyndromes of NPS were assessed with the Neuropsychiatric Inventory (NPI) and Cohen-Mansfield Agitation Inventory. Multivariate analyses were used to detect determinants for the course of NPS.Results: The mean age of the people with dementia was 78.6 years, and 52% were female. Mean Mini-Mental State Examination total score was 19.5, mean NPI total score 15.7. The most prevalent clinically relevant subsyndromes of the NPI were hyperactivity and mood/apathy, and the most prevalent individual NPS were aberrant motor behaviour (28%), agitation/aggression (24%) and apathy/indifference (22%). Of the people with dementia, 72.3% had one or more symptoms of the mood/apathy and 75.3% of the hyperactivity subsyndrome.Conclusions: GPs should be aware of NPS in people with dementia and should actively identify them when they visit these patients or when informal caregivers consult them. Timely diagnosing facilitates adequate professional care. [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]

Purpose: To explore the association between apathy and health-related quality of life (HRQoL) from resident and proxy perspectives and whether cognition and depression moderate this relationship.Methods: Secondary analyses with baseline data from a cluster randomized trial on the effects of a care program for depression in Nursing Homes (NHs) were conducted. For HRQoL, the Visual Analogue Scale (VAS) and the Dutch version of the European Quality of Life (EQ-5D) were administered to 521 NH residents, and to professional caregivers reporting from the perspective of the NH resident (Resident-Proxy) and from their own perspective (Proxy-Proxy). Utility scores (U) were calculated for the three perspectives. Apathy, depression, and cognition were measured using the 10-item Apathy Evaluation Scale, the Cornell Scale for Depression in Dementia, and the standardized Mini-Mental State Examination, respectively.Results: Mixed models adjusted for clustering within NH units revealed that apathy was negatively associated with HRQoL both from the Resident-Proxy perspective (EQ-5D VAS: estimated effect, - 0.31, P < 0.001; EQ-5D Utility: - 0.30, P < 0.001) and from the Proxy-Proxy perspective (VAS: - 0.29, P < 0.001; U: - 0.03, P < 0.001), but not from the Resident-Resident perspective (VAS: - 0.05, P = 0.423; Utility: - 0.08, P = 0.161). Controlling for depression and cognition and their interaction terms with apathy did not change the results.Conclusion: Apathy is negatively associated with NH resident HRQoL as reported by proxies. Depression and cognitive functioning do not moderate this association. NH residents do not self-report a relationship between apathy and HRQoL. More research is needed to understand caregiver and NH resident attitudes and underlying assumptions regarding apathy and HRQoL. [ABSTRACT FROM AUTHOR]

Objectives: To adequately monitor the course of cognitive functioning in persons with moderate to severe dementia, relevant cognitive tests for the advanced dementia stages are needed. We examined the ability of a test developed for the advanced dementia stages, the Severe Impairment Battery Short version (SIB-S), to measure cognitive change over time. Second, we examined type of memory impairment measured with the SIB-S in different dementia stages. Methods: Participants were institutionalized persons with moderate to severe dementia (N = 217). The SIB-S was administered at 6-month intervals during a 2-year period. Dementia severity at baseline was classified according to Global Deterioration Scale criteria. We used mixed models to evaluate the course of SIB-S total and domain scores, and whether dementia stage at baseline affected these courses. Results: SIB-S total scores declined significantly over time, and the course of decline differed significantly between dementia stages at baseline. Persons with moderately severe dementia declined faster in mean SIB-S total scores than persons with moderate or severe dementia. Between persons with moderate and moderately severe dementia, there was only a difference in the rate of decline of semantic items, but not episodic and non-semantic items. Conclusions: Although modest floor and slight ceiling effects were noted in severe and milder cases, respectively, the SIB-S proved to be one of few available adequate measures of cognitive change in institutionalized persons with moderate to severe dementia. (JINS , 2019, 25 , 204–214) [ABSTRACT FROM AUTHOR]

Objective: Little is known about the prevalence of neuropsychiatric symptoms (NPS) and psychotropic drug use (PDU) in patients below the age of 65 years with acquired brain injury (ABI) in long-term care. The objective of this study was to review the literature about the prevalence of NPS and PDU. Methods: A systematic literature search of English, Dutch and German articles in Pubmed, EMBASE, PsycINFO and CINAHL was performed with the use of MeSH and free-text terms. Results: Six articles met the inclusion criteria. The place of residence was mainly a nursing home and most studies were conducted in a population of patients with traumatic brain injury. Sample sizes varied from 40 to 26,472 residents and NPS were assessed with different assessment instruments. Depressive symptoms were most common with a prevalence ranging from 13.9% to 39.3%. Two studies reported PDU in which tranquillizers (59%) were the most prevalent psychotropic drugs followed by anticonvulsants (35%) and antidepressants (26-34%). Conclusions: Patients with ABI experience lifelong consequences, regardless the cause of ABI, that have a high impact on them and their surroundings. More insight into the magnitude of NPS and PDU, through prevalence studies, is necessary to achieve suitable provision of care for these patients. [ABSTRACT FROM AUTHOR]

Abstract Objectives Depression, apathy, and cognitive impairments are widespread in nursing home (NH) residents. Scarce research that explicitly compares apathy to depression suggests that the association between apathy and cognitive functioning is stronger than the association between depression and cognitive functioning. This study in Dutch NH residents aimed to use Bayesian methods for comparing the evidence for the relationship of cognitive performance with apathy to that with depression. Design Cross-sectional. Setting and Participants Sixteen NH somatic care units (N = 190 residents; mean age 77.2 years, standard deviation 12.9), and 17 dementia special care units (N = 243 residents; mean age 82.8 years standard deviation, 6.8]). Measures The Frontal Assessment Battery (FAB) and Mini-Mental State Examination (MMSE) were administered in residents for cognitive performance. Professional carers were interviewed for the Apathy Evaluation Scale and the Cornell Scale for Depression in Dementia. Results Regression models built with the BayesFactor package in R showed Bayesian factors (BFs) that implied extremely strong evidence in terms of the Jeffrey classification for the relationship of apathy with MMSE [standardized effect size, −0.57 (−0.66 to −0.48), BF = 3.4E+28], and with FAB [−0.50 (−0.59 to −0.42), BF = 3.0E+24]. Regarding depression, evidence was a minor fraction of that for apathy [MMSE, −0.17 (−0.27 to −0.06), BF = 15.45; FAB, −0.12 (−0.22 to −0.02), BF = 2.11]. The most evidence existed for the associations of apathy with MMSE orientation problems, especially orientation in time. Conclusions/Implications The study implies that cognitive assessments are important to differentiate apathy from depression in NH residents both with dementia and without dementia. More research is needed to clarify whether disorientation in time is a specific cognitive marker of apathy that may be used to reduce false positive depression diagnoses. [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]

Visual pursuit (VP) and visual fixation (VF) have been recognized as the first signs of emerging consciousness and, therefore, are considered indicative of the minimally conscious state (MCS). However, debate exists about their status as they are considered either conscious reactions or reflexes. The aim of this study is to review the evidence of the definition, operationalization, and assessment of VP and VF in unconscious patients. PubMed and EMBASE were searched for relevant papers between May 26, 1994 and October 1, 2016. In addition, an internet search was done to identify other relevant papers, reports and manuals of assessment methods. Papers were included if the definition, operationalization, or assessment method of VP and VF was discussed in patients with disorders of consciousness. We identified 2364 articles, of which 38 were included. No uniform definitions of VP and VF were found. VP and VF were operationalized differently, depending on which scale was used. The Coma Recovery Scale-revised and the Sensory Tool to Assess Responsiveness were the only diagnostic scales found; the other scales were developed to monitor DOC patients. The use of a mirror was the most sensitive method for detecting VP and VF. The literature about the importance VP and VF in relation with consciousness is controversial. This integrative review shows a lack of consensus regarding the definition, operationalization, and assessment of VP and VF. International consensus development about the definition, operationalization, and assessment of VP and VF is recommended. [ABSTRACT FROM AUTHOR]

Objectives A process evaluation was performed for an intervention aimed at improvement of the management of neuropsychiatric symptoms in young-onset dementia. Data about sample quality and intervention quality was evaluated to better understand internal and external validity. In addition, data about the implementation strategy and factors affecting implementation were evaluated to improve further implementation of the intervention. Design A model proposed by Leontjevas and colleagues consisting of first-order (validity) and second-order (implementation) data was used. Setting and Participants Care units delivering specialized treatment and support for residents with young-onset dementia. Measures A description of the recruitment, randomization procedure, and intervention reach was carried out to determine sample quality. To determine intervention quality, data on satisfaction, relevance, feasibility, and fidelity were collected through a questionnaire and reports logged on the server of the web-based intervention. A description of the implementation strategy was provided. Barriers and facilitators for implementation were collected by a questionnaire and analyzed by deductive content analysis. Results Care units varied in size and were recruited from different geographical regions in the Netherlands. The informed consent rate of the residents was 87.7%. The majority of the nursing home staff were satisfied with the intervention. However, parts of the intervention were perceived as less relevant for their own organization. The feasibility of the intervention was considered low. The fidelity differed between care units. The implementation strategy did not overcome all barriers. Factors affecting implementation covered 3 themes: organizational aspects, culture of the organization, and aspects of the intervention. Conclusions In general, our results showed sufficient internal and external validity, warranting further effect analyses. Adaptations to specific steps of the care program should be considered to increase feasibility and sustainability. In addition, integration of the care program into the electronic health records is expected to further improve implementation. [ABSTRACT FROM AUTHOR]

Objective The aims of this study were (1) to investigate the relationship between different neuropsychiatric symptoms (NPS) and the level of distress experienced by nurses caring for residents with young-onset dementia (YOD) and (2) to compare these findings with those for nurses caring for residents with late-onset dementia (LOD). Design/Setting This is a retrospective study conducted in Dutch long-term care facilities. Data were used from the Behavior and Evolution of Young-ONset Dementia studies (BEYOND) Parts I and II and the WAAL Behavior in Dementia-II (Waalbed-II) study. Participants A total of 382 nursing home residents with YOD and 261 nursing home residents with LOD were included. Measurements The Neuropsychiatric Inventory, nursing home version, was used to assess nursing staff distress and the frequency (F) and severity (S) of NPS. Multilevel logistic regression analysis was used to investigate the relationships between nursing staff distress related to NPS and YOD and LOD care units, the F × S score per symptom, gender, dementia subtype, and dementia severity. Results Nurses working in YOD care units rated sleep and nighttime behavior disorders, delusions, and agitation/aggression most often as highly distressing and euphoria most often as not distressing. Multivariate analyses indicated that the frequency and severity of NPS were significantly associated with staff distress in all symptoms, except for apathy. Comparison of the 2 groups of nurses demonstrated that the odds for distress related to sleep and nighttime behavior disorders were higher for nurses in YOD care units than for nurses in LOD units. For both the YOD and LOD nurses, irritability in male residents had higher impact than similar behavior in female residents. Conclusion This study provides important insight into distress related to individual NPS and the interaction with residents' characteristics. All NPS result in distress. The frequency and severity of the behavior is an important predictor. Sleep and nighttime behavior disorders are more likely to result in distress in YOD nurses than in LOD nurses. The amount of distress related to NPS emphasizes the urgent need for adequate management of NPS and the support of professional caregivers. [ABSTRACT FROM AUTHOR]

Background: Shared decision-making (SDM) can be a way for staff to adopt international recommendations advocating the involvement of nursing home residents and their family members in care planning and the development of personalized care plans.Objective: The main aim was to analyze the effects of training nursing home staff in the implementation of SDM on agreement of residents' 'life-and-care plans' with the recommendations (primary outcome) and on family caregivers' quality of life and sense of competence, and staff's job satisfaction (secondary outcomes).Methods: In the intervention condition, staff attended a training program on the use of SDM with residents and family caregivers in the care planning process. In the control condition, care planning as usual took place. For the primary outcome, in-depth qualitative and quantitative analyses of the care plans were performed. Multivariate Permutation Tests were applied to assess the impact on secondary outcomes.Results: Forty-nine residents and family caregivers and 34 professionals were involved. Overall, many of the care plans developed during the intervention showed a high level of agreement with the care planning recommendations. Both Italian and Dutch care plans showed improvement in the number of clear problem statements (p < 0.001). In Italy, significant improvements (p < 0.05) were also found regarding specific care objectives, documentation of objectives met, and of residents and families' involvement. No impact was found on secondary outcomes.Conclusion: The involvement of residents and family caregivers in care planning contributed to an improvement of the residents' care plans, but it did not have an effect on family caregivers and staff outcomes. [ABSTRACT FROM AUTHOR]

Objective Aging societies will bring an increase in the number of long-term care residents with mental-physical multimorbidity. To optimize care for these residents, it is important to study their care needs, since unmet needs lower quality of life. To date, knowledge about care needs of residents with mental-physical multimorbidity is limited. The aim of this study was to explore (un)met care needs of residents with mental-physical multimorbidity and determinants of unmet needs. Methods Cross-sectional cohort study among 141 residents with mental-physical multimorbidity without dementia living in 17 geronto-psychiatric nursing home units across the Netherlands. Data collection consisted of chart review, semi-structured interviews, (brief) neuropsychological testing, and self-report questionnaires. The Camberwell Assessment of Need for the Elderly (CANE) was used to rate (un)met care needs from residents’ and nursing staff’s perceptions. Descriptive and multivariate regression analyses were conducted. Results Residents reported a mean number of 11.89 needs (SD 2.88) of which 24.2% (n = 2.88, SD 2.48) were unmet. Nursing staff indicated a mean number of 14.73 needs (SD 2.32) of which 10.8% (n = 1.59, SD 1.61) were unmet. According to the residents, most unmet needs were found in the social domain as opposed to the psychological domain as reported by the nursing staff. Different opinions between resident and nursing staff about unmet needs was most common in the areas accommodation, company, and daytime activities. Further, nearly half of the residents indicated ‘no need’ regarding behavior while the nursing staff supposed that the resident did require some kind of support. Depression, anxiety and less care dependency were the most important determinants of unmet needs. Conclusions Systematic assessment of care needs showed differences between the perspectives of resident and nursing staff. These should be the starting point of a dialogue between them about needs, wishes and expectations regarding care. This dialogue can subsequently lead to the most optimal individually tailored care plan. To achieve this, nurses with effective communication and negotiation skills, are indispensable. [ABSTRACT FROM AUTHOR]

Background: The progression of dementia in people with young-onset dementia (YOD) is relatively unknown.Objective: To investigate the progression of dementia and cognitive decline in the three most common subtypes in YOD and to explore which factors are associated with this course.Methods: The course of dementia was examined in 198 people with YOD. The primary outcomes were cognitive function, as assessed by the Mini-Mental State Examination (MMSE) and dementia severity, as assessed by the Global Deterioration Scale (GDS). Mixed-model analyses were used to explore factors associated with the course of dementia of the diagnostic sub-types.Results: The mean overall two-year progression of dementia severity was 0.9 GDS points, this was a statistically significant change (p = 0.012) and was not significant different for the three dementia subtypes. The mean overall two-year decline in cognitive function was 1.6 points on the MMSE. The differences in cognitive decline were statistically significant (p = 0.046) among the three diagnosis groups, AD participants showed the greatest decline, of 2.3 points. In addition to lower education (p = 0.010), higher scores on the Neuropsychiatric Inventory (NPI) sub-syndromes psychosis (p < 0.001) and hyperactivity (p = 0.002) were associated with higher rates of cognitive decline. In contrast, higher scores on the NPI affect cluster were associated with lower levels of cognitive decline (p < 0.001).Conclusion: Different YOD subtypes show different rates of decline in cognitive functioning, and this decline seems less progressive compared to those observed in studies in late-onset AD. Further research is needed to evaluate whether managing neuropsychiatric symptoms can positively influence the decline of cognitive function. [ABSTRACT FROM AUTHOR]

Background: This study is part of the Research to Assess Policies and Strategies for Dementia in the Young project. Information about specific needs in young onset dementia (YOD) will provide the basis for the development of an e-health intervention to assist caregivers in coping with YOD in several European countries.Objective: The aim was to investigate the issues caregivers of people with YOD face.Methods: A qualitative content analysis method was used to analyse interviews with YOD caregivers. Quantitative data of the Needs in Young Onset Dementia study were used to select caregivers based on a ranking of unmet needs, to capture differences and similarities between caregivers that experienced high levels of unmet needs versus those with low levels of unmet needs. Needs were assessed with the Camberwell Assessment of Needs in the Elderly.Results: Findings revealed the following themes: (i) acceptance; (ii) perception of the relationship; (iii) role adaptation; (iv) Availability of appropriate services; (v) social support; and (vi) awareness in the person with dementia and acceptance of help. Several factors seemed more apparent in the caregivers who experienced few unmet needs opposed to the caregivers who experienced more unmet needs.Conclusion: The current study provides an in-depth perspective on the caregiver's experiences and emphasizes specific themes that could be addressed in future interventions. This might contribute to a caring situation in which the caregiver experiences less unmet needs. Copyright © 2017 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Background: Over the last 20 years, the effectiveness of complex care programs aiming to prevent adverse outcomes in frail elderly people has been disappointing. Recently, we found no effectiveness of the CareWell primary care program. It is largely unknown to what extent incomplete implementation of these complex interventions influences their outcomes.Objective: To examine the association between the degree of implementation of the CareWell program and the prevention of functional decline in frail elderly people.Methods: Quantitative process evaluation conducted alongside a cluster-controlled trial. Two hundred and four frail elderly participants from six general practitioner practices in the Netherlands received care according to the CareWell program, consisting of four key components: multidisciplinary team meetings, proactive care planning, case management and medication reviews. We measured time registrations of team meetings, case management and medication reviews and care plan data as stored in a digital information portal. These data were aggregated into a total implementation score (TIS) representing the program's overall implementation. We measured functional decline with the Katz-15 change score (follow-up score at 12 months minus the baseline score). The association between TIS and functional decline was analyzed with linear mixed model analyses.Results: We found no statistically significant differences in functional decline between TIS groups (F = 1.350, P = 0.245). In the groups with the highest TISs, we found more functional decline.Conclusion: A higher degree of implementation of the CareWell program did not lead to the prevention of functional decline in frail elderly people. [ABSTRACT FROM AUTHOR]

Background: Neuropsychiatric symptoms (NPS) frequently occur in community-dwelling patients with dementia and they are also frequently prescribed psychotropic drugs. The prescription of psychotropic drugs has been found to be associated with the level of NPS. Data on NPS in patients with dementia in general practices are scarce.Objectives: The aim of this study was to assess the prevalence rates of NPS and psychotropic drug use (PDU) in patients with dementia in general practices.Methods: We analyzed data from the baseline measurement of a prospective cohort study in a sample of (Dutch) patients in general practices. Prevalence rates of NPS and subsyndromes assessed with the Neuropsychiatric Inventory (NPI) and of PDU were calculated. Prevalence rates of individual NPS are presented both as clinically relevant symptoms (NPI symptom score ≥ 4) and as prevalence rates of symptoms with symptom score > 0.Results: Of the 117 patients, more than 90% had at least one symptom and more than 65% had at least one clinically relevant symptom. The most common NPS were agitation/aggression, dysphoria/depression and irritability/lability. The most common clinically relevant NPS were aberrant motor behaviour, agitation/aggression and apathy/indifference. Only 28.7% of the patients used at least one, 7.0% used at least two different and 1.7% used at least three different types of psychotropic drugs (excluding anti-dementia medication).Conclusions: NPS are highly prevalent in patients with dementia in general practices, but PDU is rather low. The most common clinically relevant NPS were aberrant motor behaviour, agitation/aggression and apathy/indifference. [ABSTRACT FROM AUTHOR]

Objective: The objective was to describe end-of-life treatment decisions for patients dying with dementia in various stages of dementia in long-term care facilities in the Netherlands with elderly care physicians responsible for treatment and care.Methods: We present data collected in the nationally representative Dutch End of Life in Dementia study (2007-2011). Within 2 weeks after death, 103 physicians completed questionnaires about the last phase of life in 330 residents with dementia who resided in 1 of 34 participating long-term care facilities. We used descriptive statistics.Results: Advance directives were rare (4.9%). A minority was hospitalized (8.0%) in the last month (mainly for fractures) or received antibiotics (24.2%) in the last week (mainly for pneumonia). Four residents received tube feeding or rehydration therapy in the last week. In almost half of the residents (42.3%), decisions were made not to start potentially life-prolonging treatment such as hospital transfer and artificial nutrition and hydration. In more than half of the residents (53.7%), decisions were made to withdraw potentially life-prolonging treatment such as artificial nutrition and hydration and medication. Antibiotics were more frequently prescribed for residents with less advanced dementia, but otherwise there were no differences in treatment decisions between residents with advanced and less advanced dementia.Conclusions: Physicians often withhold potentially burdensome life-prolonging treatment in nursing home residents in all stages of dementia in the Netherlands. This suggests that the physicians feel that a palliative care approach is appropriate at the end of life in dementia in long-term care. Copyright © 2016 John Wiley & Sons, Ltd. StartCopTextCopyright © 2016 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Objectives To determine the prognostic value of apathy for mortality in patients of somatic ( SC) and dementia special care ( DSC) nursing home ( NH) units. Design Longitudinal design, secondary analyses of a 2-year, cluster-randomized trial with six measurements, approximately 4 months in between. Setting SC and DSC-units of Dutch NHs. Participants NH-patients of seventeen SC-units (n = 342) and sixteen DCS-units (n = 371). Measurements Data were available for 713 NH-patients, 266 of whom died during the study. Apathy was assessed using the 10-item Apathy Evaluation Scale ( AES-10) and applied as categorical variable using known cut-off scores as well as dimensional variable. Additionally, depressive symptoms were assessed using the Cornell Scale for Depression in Dementia. Results Mixed effects cox models using the coxme package in R revealed a higher risk of mortality between two measurements, if apathy was present (hazard ratio ( HR) = 1.77; 95% confidence interval ( CI] = 1.35-2.31, P < .001). Results remained significant ( HR = 1.64; 95% CI = 1.23-2.19, P < .001) when controlled for depressive symptoms. DSC-units and SC-units did not differ ( P > .05) in the effect of apathy on mortality. Male gender ( HR = 1.67; 95% CI = 1.23-2.27, P < .001), and higher age in years ( HR = 1.06; 95% CI = 1.04-1.08, P < .001) were also predictors of mortality. Regarding apathy as a dimensional construct, one standard deviation increase of AES-10 scores was associated with a 62% increase of mortality risk ( HR = 1.62, 95% CI = 1.40-1.88, P < .001). Conclusions Apathy was associated with mortality over a 4-month period in NH patients, even when controlling for depression. These data suggest that screening and treatment strategies for apathy should be developed for this patient population. [ABSTRACT FROM AUTHOR]

Objective: In this review, the care needs and experiences with the use of available services of individuals with young-onset dementia (YOD) and their caregivers were investigated. This knowledge is an important prerequisite for the development of appropriate interventions and personalized care to address their specific needs and problems.Design: A systematic literature search was performed in PubMed, Psycinfo and Cinahl. A quality checklist for observational and qualitative studies was used to appraise the methodological quality of the studies.Results: Twenty-seven studies were included, and a synthesis of the literature revealed six themes. The first theme concerned problems in the diagnostic period. Early recognition and referral was reported as an essential area that required improvement in order to obtain appropriate help in time. The second theme discussed the need for information about YOD and the availability of care throughout the caregiving trajectory. The third theme described barriers in access to care that hindered caregivers in finding the right services. The fourth theme showed the availability of appropriate services and specific unmet needs. The fifth theme illustrated that behavioural and personality changes pose a significant challenge for caregivers and other family members. The last theme showed the profound impact of YOD on caregivers.Conclusions: The literature indicates that people with YOD and their caregivers face a wide range of difficulties during the disease process. The reviewed studies provide an important foundation for knowledge and awareness about the specific care needs and experiences of people with YOD and their caregivers. Copyright © 2016 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

This article reports the findings of a survey on end-of-life (EOL) care in nursing homes of 18 long-term care experts across 15 countries. The experts were chosen as a convenience-based sample of known experts in each country. The survey was administered in 2016 and included both open-ended responses for defining hospice care, palliative care, and “end of life,” and a series of questions related to the following areas—attitudes toward EOL care, current practice and EOL interventions, structure of care, and routine barriers. Overall experts strongly agreed that hospice and palliative care should be available in long-term care facilities and that both are defined by holistic, interdisciplinary approaches using measures of comfort across domains. However, it appears the experts felt that in most countries the reality fell short of what they believed would be ideal care. As a result, experts call for increased training, communication, and access to specialized EOL services within the nursing home. [ABSTRACT FROM AUTHOR]

Aims: The aims of this study are to (1) explore the determinants of quality of life (QoL) in nursing home residents with young-onset dementia (YOD), (2) investigate whether there are differences between dementia subtypes (Alzheimer dementia, vascular/mixed dementia, frontotemporal dementia, other) regarding these determinants, and (3) compare QoL profiles of YOD nursing home residents across dementia subtypes. Methods: This cross-sectional study included 207 nursing home residents. Multilevel modeling was used to determine the relationships between QoL and neuropsychiatric symptoms (NPS), dementia severity, psychotropic drug use (PDU), dementia subtype, age, and gender. Additional multilevel models were used to compare aspects of QoL between dementia subtypes. Results: Residents' QoL was negatively associated with advanced dementia, PDU, and NPS. In general, the relationships between the determinants and QoL were similar across the dementia subtypes. Aspects of QoL differed by dementia subtype. Residents with frontotemporal dementia showed less negative emotions, accepted more help and experienced better quality of relationships with professional caregivers, had a more positive self-image, felt more comfortable in the nursing home environment, and experienced lower quality of social relationships. Conclusions: Considering the high rates of NPS and PDU in YOD residents and their negative associations with QoL, we recommend emphasizing services to manage and reduce NPS and PDU in nursing home residents with YOD. Furthermore, our findings suggest accounting for differences in aspects of QoL by dementia subtype to address specific needs and thereby improve QoL. [ABSTRACT FROM AUTHOR]

Background: Care planning nowadays is a key activity in the provision of services to nursing home residents. A care plan describes the residents' needs and the actions to address them, providing both individualized and standardized interventions and should be updated as changes in the residents' conditions occur.Objective: The aim of this review was to identify the core elements of the implementation of changes in nursing homes' care plans, by providing an overview of the type of stakeholders involved, describing the implementation strategies used, and exploring how care plans changed.Methods: An integrative literature review was used to evaluate intervention studies taking place in nursing homes. Data were collected from PubMed, CINHAL-EBSCO, and PsycINFO. English language articles published between 1995 and April 2015 were included. Data analysis followed the strategy of Knafl and Whittemore.Results: Twenty-six articles were included. The stakeholders involved were professionals, family caregivers, and patients. Only a few studies directly involved residents and family caregivers in the quality improvement process. The implementation strategies used were technology implementation, audit, training, feedback, and supervision. The majority of interventions changed the residents' care plans in terms of developing a more standardized care documentation that primarily focuses on its quality. Only some interventions developed more tailored care plans that focus on individualized needs.Conclusion: Care plans generally failed in providing both standardized and personalized interventions. Efforts should be made to directly involve residents in care planning and provide professionals with efficient tools to report care goals and actions in care plans. [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]

Context: A gold standard or validated tool for monitoring the level of discomfort during continuous palliative sedation (CPS) is lacking. Therefore, little is known about the course of discomfort in sedated patients, the efficacy of CPS, and the determinants of discomfort during CPS.Objectives: To identify the course of discomfort in patients receiving CPS.Methods: A prospective observational multicenter study in nine hospices and palliative care units was performed. The Discomfort Scale-Dementia of Alzheimer Type (DS-DAT) was independently assessed for monitoring of patient discomfort during CPS. The DS-DAT scores range from 0 (no observed discomfort) to a maximum of 27 (high level of observed discomfort). Using a mixed model, the mean group score of discomfort between four predefined time frames of CPS was compared, correcting for confounding patient characteristics.Results: A total of 130 patients were sedated, and the DS-DAT was completed in 106 patients at least once. The median duration of the sedation in these 106 patients was 25.5 hours (range 2-161). The mean score of the DS-DAT in the phase before sedation was 12.16 (95% CI 9.83-14.50) and decreased significantly to 8.06 (95% CI 5.53-10.58) in the titration phase of sedation. The mean score of the DS-DAT in the final phase of sedation was 7.42 (95% CI 4.90-9.94).Conclusion: This study shows that CPS is associated with a decrease in the level of discomfort within an acceptable time frame, although in some sedated patients higher levels of discomfort in the last hours of life occurred. Although the DS-DAT seems to be of value for monitoring the level of discomfort during CPS, the results of this study should be interpreted within the constraints of the limitations, and further research on the psychometric properties of this tool is needed before the DS-DAT can be used in clinical practice. [ABSTRACT FROM AUTHOR]

Background: Pneumonia in people with dementia has been associated with severe discomfort. We sought to assess the effectiveness of a practice guideline for optimal symptom relief for nursing home residents with dementia and pneumonia.Methods: A single-blind, multicenter, cluster randomized controlled trial was conducted in 32 Dutch nursing homes. Outcomes were assessed on the patient level. The main outcome measures were discomfort and symptoms: discomfort (DS-DAT: Discomfort Scale-Dementia of Alzheimer Type), (lack of) comfort (EOLD-CAD: End Of Life in Dementia-Comfort Assessment in Dying), pain (PAINAD: Pain Assessment in Advanced Dementia), and respiratory distress (RDOS: Respiratory Distress Observation Scale). Outcomes were scheduled daily from diagnosis until 10 days later and a final time between 13-15 days from diagnosis by trained observers who were blinded to the intervention and the residents' condition and treatment. In a pre-intervention phase, usual care was provided to all homes. In the intervention phase, matched clusters of homes were randomized to either the control (n = 16) or intervention condition (n = 16).Results: Between 1 January 2012 and 1 May 2015, 464 episodes of pneumonia were included. Outcomes were obtained for 399 episodes in 367 residents. Longitudinal multilevel linear regression analyses were performed on log-transformed outcomes, so coefficients should be interpreted as a ratio, and a coefficient of 1 means no difference. The practice guideline in the intervention phase did not reduce the level of discomfort and symptoms: DS-DAT: 1.11 (95 % CI 0.93-1.31), EOLD-CAD: 1.01 (95 % CI 0.98-1.05), PAINAD: 1.04 (95 % CI 0.93-1.15), RDOS: 1.11 (95 % CI 0.90-1.24). However, in both the intervention and control groups, lack of comfort and respiratory distress gradually decreased during the entire 3.5 years of data collection, and were lower in the intervention phase compared to the pre-intervention phase: DS-DAT: 0.93 (95 % CI 0.85-1.01), EOLD-CAD: 0.98 (95 % CI 0.97-1.00), PAINAD: 0.96 (95 % CI 0.91-1.01), RDOS: 0.92 (95 % CI 0.87-0.98).Conclusions: When compared to usual care, the practice guideline for optimal symptom relief did not relieve discomfort and symptoms in nursing home residents with dementia and pneumonia. However, discomfort and symptoms decreased gradually throughout the data collection in both the intervention homes and the control homes. An intervention that focuses on creating awareness may be more effective than a physician practice guideline.Trial Registration: The Netherlands National Trial Register (ID number NTR5071 . Registered 10 March 2015). [ABSTRACT FROM AUTHOR]

Background: The course of psychological distress in informal caregivers of patients with dementia has been investigated in longitudinal studies with conflicting outcomes.Objectives: We investigated the course and determinants of psychological distress in informal caregivers of patients with dementia in primary care.Methods: In this prospective observational cohort study, data were collected at baseline, after 9 and 18 months. We assessed cognition and neuropsychiatric symptoms (NPS) of the patient (Mini-Mental State Examination and Neuropsychiatric Inventory) and psychological distress (Sense of Competence Questionnaire, Center for Epidemiological Studies Depression scale and General Health Questionnaire 12-tem version) of the informal caregivers. Determinants for the course of psychological distress were caregivers' age, gender and relationship with the patient, patients' cognition and NPS, participation in a care program and admission to long-term care facilities (LTCF). With linear mixed models, the course over time for psychological distress and its determinants were explored.Results: We included 117 informal caregivers, of whom 23.1% had a high risk for depression and 41.0% were identified to be likely to have mental problems at baseline. We found a stable pattern of psychological distress over time. Higher frequency of NPS, informal caregivers' age between 50 and 70 years and being female or spouse were associated with higher psychological distress. For patients who were admitted to a LTCF during the study psychological distress of the informal caregivers improved.Conclusions: GPs should focus on NPS in patients with dementia and on caregivers' psychological distress and be aware of their risk for depression and mental problems, specifically to those who are spouse, female or between 50 and 70 years of age. [ABSTRACT FROM AUTHOR]

Background The aim of prescribing medication in palliative end-of-life care should be symptom control. Data are lacking regarding the prescription of medication at the end of life. Aim To investigate the prescription of medication in patients at the end of life in palliative care facilities. Design, setting, and participants An observational multicenter study in 7 inpatient palliative care facilities. Participants were adults with an estimated life expectancy of less than 3 months. The study was conducted from February 1, 2012, to January 1, 2013. Results A total of 155 patients were enrolled. On average, patients were prescribed 6.1 drugs at the moment of admission and 4.6 drugs on the day of death. The prescription of analgesics, psycholeptics, and drugs for functional gastrointestinal disorders increased from admission until death. In general, these are drug classes prescribed for symptom control. All other drug classes decreased between admission and the day of death, including different drug classes for the treatment of comorbid disease, such as anticoagulants, beta-blocking agents, drugs used in diabetes, and lipid-modifying agents. Conclusions and relevance A reduction in the total amount of medication is seen between admission and death in the palliative care facilities. Although there is an increase in prescribed symptom-specific medication and a reduction in medication prescribed for comorbid disease, there are still patients dying with medication not used for symptom control. This increases pill burden and indicates that physicians need to develop guidelines and educational programs for decreasing medication for comorbidities at the end of life. [ABSTRACT FROM AUTHOR]

Objective Young-onset dementia (YOD) is defined as dementia that develops before the age of 65. Neuropsychiatric symptoms (NPS) have important clinical consequences for patients and their family members. To date, knowledge about the prevalence and correlates of NPS in YOD is limited, but essential to establish specific tailored care for patients with YOD. The aim of this study was to explore the prevalence and correlates of NPS in nursing home residents with YOD. Design/Setting Cross-sectional cohort study in Dutch long-term care facilities providing specialized care for YOD. Participants Participants included 230 institutionalized patients with YOD. Measurements NPS were assessed using the Cohen-Mansfield Agitation Inventory (CMAI) and the Neuropsychiatric Inventory-Nursing Home version (NPI-NH). The influence of gender, dementia severity, type of dementia, and disease awareness on clusters of relevant NPS was investigated using multivariate logistic regression analysis and subsequently corrected for the possible confounders of age, duration of institutionalization, and psychoactive medication use. Results Ninety percent of the nursing home residents with YOD showed 1 or more neuropsychiatric symptoms, 88% showed significant agitation, and 56% showed relevant apathy. No gender differences were found. Although physically aggressive behavior, non–physically aggressive behavior, and apathy were more common in patients with (very) severe cognitive decline (Global Deterioration Scale [GDS] stage 6–7), verbally agitated behavior was common in patients in all except the most severe stages of dementia (GDS 2–6). Apathy was more prevalent in alcohol-related dementia. Low levels of awareness were associated with more physically aggressive behavior and aberrant motor behavior. Conclusion The prevalence of NPS was high and was associated with the severity and type of dementia and disease awareness. Agitation and apathy are the most important symptoms to focus on in YOD. The high prevalence of NPS supports the idea of care delivery in special care units. Further research is needed on potentially influencing environmental correlates of NPS in YOD. [ABSTRACT FROM AUTHOR]

Context: Knowledge of determinants that are associated with the administration of continuous palliative sedation (CPS) helps physicians identify patients who are at risk of developing refractory symptoms, thereby enabling proactive care planning.Objectives: This study aims to explore which patient-related factors at admission are associated with receiving CPS later in the terminal phase of life.Methods: A prospective multicenter observational study was performed in six Dutch hospices and three nursing home-based palliative care units. The association between patient-related variables at admission (age, gender, diagnosis, use of opioids or psycholeptics, number of medications, Karnofsky Performance Status scale score, Edmonton Symptom Assessment System distress score, and Glasgow Coma Scale score) and the administration of CPS at the end of life was analyzed.Results: A total of 467 patients died during the study period, of whom 130 received CPS. In univariate analysis, statistically significant differences were noted between the sedated and nonsedated patients with respect to younger age (P = 0.009), malignancy as a diagnosis (P = 0.05), higher Karnofsky Performance Status score (P = 0.03), the use of opioids (P < 0.001), the use of psycholeptics (P = 0.003), and higher Edmonton Symptom Assessment System distress score (P = 0.05). Multivariate logistic regression analysis showed that only the use of opioids at admission (odds ratio 1.90; 95% confidence interval 1.18-3.05) was significantly associated with the administration of CPS.Conclusion: Physicians should be aware that patients who use opioids at admission have an increased risk for the administration of CPS at the end of life. In this group of patients, a comprehensive personalized care plan starting at admission is mandatory to try to prevent the development of refractory symptoms. Further research is recommended, to identify other determinants of the administration of CPS and to investigate which early interventions will be effective to prevent the need for CPS in patients at high risk. [ABSTRACT FROM AUTHOR]

Objectives With the lack of a cure for Alzheimer disease (AD), the identification of comorbidity is important to reduce the possibility of excess disability. Although comorbidity in patients with late-onset AD (LO-AD) is common, for people with young-onset AD (YO-AD), it is unclear how often comorbidity occurs. Furthermore, it is uncertain whether comorbidity in patients with YO-AD differs from that in patients with LO-AD. The aim of this study was to explore the prevalence, types of morbidity, and morbidity profiles in patients with YO-AD compared with those of patients with LO-AD. Design Explorative cohort study from 2 separate Dutch cohorts (Needs in Young-onset Dementia [NeedYD] and the Clinical Course of Cognition and Comorbidity–Dementia Study [4C-Dementia study]). Setting Participants were recruited in 2007 and 2008 from (1) the memory clinics of 3 Dutch Alzheimer centers, (2) the memory clinics of general hospitals, (3) mental health services in the southern part of the Netherlands, and (4) young-onset dementia specialized day care facilities. A comparison group of community-dwelling, elderly patients with AD was selected from the 4C-Dementia study. Patients in this study were recruited in 2010 and 2011 from the aforementioned Alzheimer centers. Measurements The prevalence rates of comorbidity were compared between 177 patients with YO-AD and 155 patients with LO-AD. Comorbidity was classified using the International Classification of Diseases, 10th Revision (ICD-10). The total amount of comorbidity was established by counting the number of existing diseases (ICD categories or chapters) and comorbidity was also dichotomized as present or absent. Furthermore, a hierarchical cluster analysis was performed to study clusters of comorbidity. Results Compared with LO-AD, patients with YO-AD showed less ( P < .001) overall comorbidity (58.2% vs 86.5%) and had lower prevalence rates of diabetes, obesity, and circulatory diseases; however, the prevalence rates of diseases of the nervous system in YO-AD (6.2%) were higher compared with those of patients with LO-AD (4.5%). The cluster analysis revealed a distinctive group of patients with YO-AD with either no comorbidity or with a disease of the nervous system. Endocrine, nutritional, and metabolic diseases and diseases of the circulatory system were present in 34% of the patients with YO-AD. Conclusion Comorbidity is less common in YO-AD than in LO-AD. However, general practitioners should be aware that approximately one-third of the patients with YO-AD suffer from or have endocrine, nutritional, and metabolic diseases and/or diseases of the circulatory system. Treatment should therefore not only focus on dementia but also on comorbidity. This attention may slow the functional decline in AD. These exploratory analyses suggested a higher prevalence of nervous system diseases in YO-AD compared with LO-AD. However, the finding did not reach statistical significance and in combination with the exploratory nature of the analyses justifies further investigation. If verified, this finding may help to decrease the time to diagnosis of AD and, subsequently, support in young patients with a neurological disease. Further investigation is needed to gain more insight into the association between comorbidity and AD in younger people. [ABSTRACT FROM AUTHOR]

Objectives To describe observations of suffering in patients with dementia from the diagnosis of pneumonia until cure or death. Design Prospective observational study between January 2012 and May 2014. Setting Dutch nursing homes (32). Participants Nursing home patients with dementia and pneumonia (n = 193). Measurements Independent observers performed observations of patients with dementia scheduled 13 times within the 15 days following diagnosis of pneumonia; twice daily in the first 2 days– to observe discomfort (Discomfort Scale–Dementia of Alzheimer Type; range 0–27), comfort (End Of Life in Dementia-Comfort Assessment in Dying; range 14–42), pain (Pain Assessment in Advanced Dementia; range 0–10), and dyspnea (Respiratory Distress Observation Scale; range 0–16). Results Observational data were obtained for 208 cases of pneumonia in 193 patients. In 71.2% of cases, patients received 1 or more treatments to relieve symptoms such as antipyretics, opioids, or oxygen; 89.4% received antibiotics. Discomfort was highest 1 day after diagnosis [mean Discomfort Scale-Dementia of Alzheimer Type score 8.1 (standard deviation, SD 5.8)], then declined, and stabilized around day 10 [mean 4.5 (SD 4.1)], or increased in the days preceding death. Observed pain and dyspnea followed a comparable pattern. Discomfort patterns did not differ much between cases treated with and without antibiotics. Conclusions Pneumonia in patients with dementia involved elevated levels of suffering during 10 days following diagnosis and in the days preceding death. Overall observed discomfort was low compared with prior Dutch studies, and the number of treatments to relieve symptoms was higher. Future studies should examine whether symptoms of pneumonia can be relieved even more, and what treatments are the most effective. [ABSTRACT FROM AUTHOR]

Aim. This protocol describes a systematic review that evaluates the effects of physician substitution by mid-level providers (nurse practitioners, physician assistants or nurses) in primary healthcare for older people and long-term care facilities. The secondary aim is to describe facilitators and barriers to the implementation of physician substitution in these settings. Background. Healthcare for older people is undergoing major changes, due to population ageing and reforms that shift care to the community. Besides, relatively few medical students are pursuing careers in healthcare for older people. Innovative solutions are needed to guarantee the quality of healthcare and to contain costs. A solution might be shifting care from physicians to mid-level providers. To date, no systematic review on this topic exits to guide policymaking. Design. A quantitative systematic literature review using Cochrane methods. Methods. The following databases will be searched for original research studies that quantitatively compare care provided by a physician to the same care provided by a mid-level provider: PubMed, EMBASE, CINAHL, PsycINFO, CENTRAL and Web of Science. Study selection, data extraction and quality appraisal will be conducted independently by two reviewers. Data synthesis will consist of a qualitative analysis of the data. Funding of the review was confirmed in August 2013 by the Ministry of Health, Welfare and Sport of the Netherlands. Discussion. This review will contribute to the knowledge on effects of physician substitution in healthcare for older people and factors that influence the outcomes. This knowledge will guide professionals and policy administrators in their decisions to optimize healthcare for older people. [ABSTRACT FROM AUTHOR]

Background: People with dementia can benefit from a palliative care approach. Recommendations, such as those of the EAPC have been proposed to strengthen the provision of palliative care for this group of patients. Yet, it remains challenging for professionals to identify when a person with dementia is in need of palliative care. The objective of this study therefore was to explore when professionals in long-term care settings consider a person with dementia in need of palliative care. Methods: Teams with in total 84 professionals working in 13 long-term care settings from 6 countries (France, Germany, Italy, Norway, Poland and the Netherlands) received a case-vignette concerning a person with dementia recently admitted to a nursing home. Teams were asked to discuss when they considered people with dementia eligible for palliative care. The constant comparative method was used to analyse their answers. Results: Three different time points in the disease trajectory when people with dementia were considered to be eligible for palliative care were extracted: (1) early in the disease trajectory; (2) when signs and symptoms of advanced dementia are present; and (3) from the time point that curative treatment of co-morbidities is futile. Yet, none of these time points was uniformly considered by the professional teams across Europe. In some cases, professionals working in the same nursing home didn't even reach consensus when considering persons with dementia eligible for palliative care. Conclusion: The results of the study identified that professionals across Europe have different opinions regarding the time point when to consider a person with dementia in need of palliative care. [ABSTRACT FROM AUTHOR]

Objectives The aim of this study was to develop an index derived from the Medication Appropriateness Index (MAI) items that is suited for clinical studies evaluating appropriateness of psychotropic drug use (PDU) for neuropsychiatric symptoms (NPS) in patients with dementia in nursing homes and to test its reliability and validity. Study Design and Setting An expert panel reviewed the MAI items to develop items for appropriateness of PDU; a second, independent, expert panel determined content validity of the items. An interrater reliability study was conducted (N = 54), and a summated index score, based on weighted item scores, was developed to enhance the use in clinical studies. Construct validity was explored using a representative sample of 560 medical records. Results Five existing MAI items were used, the MAI item "indication" was adjusted, a new item "evaluation" was added, and scoring rules were based on guideline recommendations, to create the Appropriate Psychotropic drugs use In Dementia (APID) index. The second expert panel concluded that all items contributed to the construct "appropriateness." All items and the summated index score had moderate to almost perfect interrater reliability (intraclass correlation coefficient for agreement, 0.577-1). The summated index score showed promising construct validity, for example, no multicollinearity issues were found. Conclusion The results of this study show that the APID index is reliable and valid for measuring appropriateness of PDU for NPS in dementia in nursing homes in clinical studies. [ABSTRACT FROM AUTHOR]

Objective This study aimed to develop a practice guideline for a structured and consensus-based approach to relieve symptoms of pneumonia in patients with dementia in nursing homes. Methods A five-round Delphi study involving a panel consisting of 24 experts was conducted. An initial version of the practice guideline was developed with leading representatives of Dutch University Medical Centers with a department for elderly care medicine, based on existing guidelines for palliative care. The experts evaluated the initial version, after which we identified topics that reflected the main divergences. The experts rated their agreement with statements that addressed the main divergences on a 5-point Likert scale. Consensus was determined according to pre-defined criteria. The practice guideline was then revised according to the final decisions made by the project group and the representatives. Results The response rate for the expert panel was 67%. Main divergences included the applicability of guidelines for palliative care to patients with dementia and pneumonia in long-term care and the appropriateness of specific pharmacological treatment of dyspnea and coughing. Moderate consensus was reached for 80% of the statements. Major revisions included adding pharmacological treatment for coughing and recommending opioid rotation in the case of opioid-induced delirium. Two areas of divergent opinion remained: the usefulness of oxygen administration and treatment of rattling breath. The project group made the final decision in these areas. Conclusions We developed a mostly consensus-based practice guideline for patients with dementia and pneumonia and mapped controversial issues for future investigation. Copyright © 2014 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

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

Context A significant challenge facing health care is the ageing of the population, which calls for a major response in medical education. Most clinical learning takes place within hospitals, but nursing homes may also represent suitable learning environments in which students can gain competencies in geriatric medicine. Objectives This study explores what students perceive as the main learning outcomes of a geriatric medicine clerkship in a hospital or a nursing home, and explicitly addresses factors that may stimulate or hamper the learning process. Methods This qualitative study falls within a constructivist paradigm: it draws on socio-cultural learning theory and is guided by the principles of constructivist grounded theory. There were two phases of data collection. Firstly, a maximum variation sample of 68 students completed a worksheet, giving brief written answers on questions regarding their geriatric medicine clerkships. Secondly, focus group discussions were conducted with 19 purposively sampled students. We used template analysis, iteratively cycling between data collection and analysis, using a constant comparative process. Results Students described a broad range of learning outcomes and formative experiences that were largely distinct from their learning in previous clerkships with regard to specific geriatric knowledge, deliberate decision making, end-of-life care, interprofessional collaboration and communication. According to students, the nursing home differed from the hospital in three aspects: interprofessional collaboration was more prominent; the lower resources available in nursing homes stimulated students to be creative, and students reported having greater autonomy in nursing homes compared with the more extensive educational guidance provided in hospitals. Conclusions In both hospitals and nursing homes, students not only learn to care for older patients, but also describe various broader learning outcomes necessary to become good doctors. The results of our study, in particular the specific benefits and challenges associated with learning in the nursing home, may further inform the implementation of geriatric medicine clerkships in hospitals and nursing homes. [ABSTRACT FROM AUTHOR]

Background: Infections frequently occur in patients with dementia and antibiotics are often prescribed, but may also be withheld. Objectives: The aim of this systematic review is to provide a systematic overview of the prevalence of antibiotic use, and factors associated with prescribing antibiotics in patients with dementia. Data Sources: A systematic search of MEDLINE, EMBASE, PSYCINFO, CINAHL, and the Cochrane library databases until February 13, 2014 was performed, using both controlled terms and free-text terms. Results: Thirty-seven articles were included. The point prevalence of antibiotic use in patients with dementia ranged from 3.3 to 16.6 %. The period prevalence ranged from 4.4 to 88 % overall, and from 23.5 to 94 % in variable time frames before death; the median use was 52 % (median period 14 days) and 48 % (median period 22 days), respectively. Most patients with lower respiratory tract infections or urinary tract infections (77-91 %) received antibiotic treatment. Factors associated with antibiotic use related to patients, families, physicians, and the healthcare context. More severe dementia and a poor prognosis were associated with less antibiotic use in various countries. Associations with aspiration and illness severity differed by country. Conclusions and Implications: Antibiotic use in patients with dementia is substantial, and probably highly associated with the particular healthcare context. Future studies may report antibiotic use by infection type and stage of dementia, and compare cross-nationally. [ABSTRACT FROM AUTHOR]

Background: Challenging behavior exhibited by people with dementia can have adverse outcomes, like stress, low morale, low work satisfaction and absenteeism for nursing staff in long-term care settings. Training nursing staff to manage challenging behavior may reduce its impact. Although much of the research into training nursing staff shows methodological limitations, several studies find some effect of training programs on knowledge about and on management of challenging behavior. Effects on stress or burnout are almost not found. Methods/design: The TENSE-study is a randomized controlled study on 18 nursing home units (9 control, 9 intervention) investigating the effects of a continuous educational program for nursing staff about managing challenging behavior. Nursing staff of intervention units receive the program, nursing staff of control units do not and continue usual care. The primary outcome is stress experienced by nursing staff (N = 135). Secondary outcomes are: emotional workload, work satisfaction, stress reactions at work and knowledge about challenging behaviour of nursing staff; and frequency of challenging behavior, quality of life and social engagement of residents. Because there are many unknown factors influencing the effect of the training, a process evaluation to evaluate sampling-, implementation- and intervention quality as well as barriers and facilitators to implementation will also be included in the analysis. Nursing staff could not be blinded to the intervention, but were blinded for the outcomes. Discussion: Strengths of this study are the (good) description of the intervention complemented by a process evaluation and the tailoring of the intervention to the wishes and needs of the nursing homes at any moment during the study. Sustaining the effects of the intervention by using follow up sessions is another strength. Possible drawbacks may be dropout because of the frailty of the elderly population and because nursing staff might move to another job during the study. Trial registration NTR (Dutch Trial Registration) number NTR3620 [ABSTRACT FROM AUTHOR]

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

Objectives:Geriatric patients’ physical disabilities, dependency on care, and possible psychological ill-being may negatively affect both the patient's quality of life and the informal caregiver burden. Focusing on this interrelationship which can be particularly prominent in geriatric patients with stroke, the objective of this study was to identify determinants of patients’ quality of life and informal caregiver burden. Method:This is a prospective, multicentre, cohort study. Data were collected in 84 geriatric home-dwelling patients with stroke three months after their rehabilitation period in skilled nursing facilities (SNFs). We assessed patients’ quality of life, depressive complaints, neuropsychiatric symptoms, balance, (instrumental) activities of daily living, and informal caregiver burden. Linear regression models were constructed to study the association between the variables. Results:For several domains, high quality of life of these geriatric patients was associated with high functional independence, less neuropsychiatric symptoms, and less depressive complaints. Informal caregiver burden was not associated with patients’ quality of life, but patients’ neuropsychiatric symptoms were a significant determinant of high informal caregiver burden. Conclusion:The presence of neuropsychiatric symptoms (more specifically depressive complaints) negatively affects the quality of life of geriatric patients. Their neuropsychiatric symptoms also affect caregiver burden. Health care professionals in SNFs can play an important role in providing the necessary psychosocial support and aftercare. [ABSTRACT FROM AUTHOR]