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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]

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]

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Objectives This study aimed to gain insight into how substitution of elderly care physicians (ECPs) by nurse practitioners (NPs), physician assistants (PAs) or registered nurses (RNs) in nursing homes is modelled in different contexts and what model in what context contributes to perceived quality of healthcare. Second, this study aimed to provide insight into elements that contribute to an optimal model of substitution of ECPs by NPs, PAs or RNs. Design A multiple-case study was conducted that draws on realist evaluation principles. Setting Seven nursing homes in the Netherlands Participants The primary participants were NPs (n=3), PAs (n=2) and RNs (n=2), working in seven different nursing homes and secondary participants were included; ECPs (n=15), medical doctors (MDs) (n=2), managing directors/managers/supervisors (n=11), nursing team members (n=33) and residents/relatives (n=78). Data collection Data collection consisted of: (1) observations of the NP/PA/RN and an ECP/MD, (2) interviews with all participants, (3) questionnaires filled out by the NP/PA/RN, ECPs/MDs and managing directors/managers and (4) collecting internal policy documents. Results An optimal model of substitution of ECPs seems to be one in which the professional substitutes for the ECP largely autonomously, well-balanced collaboration occurs between the ECP and the substitute, and quality of healthcare is maintained. This model was seen in two NP cases and one PA case. Elements that enabled NPs and PAs to work according to this optimal model were among others: collaborating with the ECP based on trust; being proactive, decisive and communicative and being empowered by organisational leaders to work as an independent professional. Conclusions Collaboration based on trust between the ECP and the NP or PA is a key element of successful substitution of ECPs. NPs, PAs and RNs in nursing homes may all be valuable in their own unique way, matching their profession, education and competences. [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]

Video feedback at home (VFH) aims to improve the well-being of informal caregivers and persons with dementia by training the caregiver to communicate successfully. This feasibility study had 2 aims: (1) to investigate possible effects regarding VFH, caregiver self-efficacy and the burden experienced, and the frequency of challenging behavior in persons with dementia, and (2) to perform a process evaluation of barriers and facilitators regarding the use of VFH. The respondents were caregivers of home-dwelling persons with dementia participating in VHF (N = 10), a group of caregivers who declined participating in VFH (N = 18), stakeholders (N = 6), and field experts (N = 55). The assessments performed were Positive and Negative Affect Scales, Cohen-Mansfield Agitation Inventory, Sense of Competence Scale, semistructured interviews, and questionnaires. Results demonstrated that caregivers were satisfied with VFH and that various (sub)scores on questionnaires improved. Caregivers mentioned a reluctance toward being filmed and both caregivers and referrers were unfamiliar with VFH. Recommendations have been made for health-care professionals and researchers to overcome these barriers. [ABSTRACT FROM AUTHOR]

Dementia and Parkinson's disease are incurable neurological conditions. Patients often experience specific, complex, and varying needs along their disease trajectory. Current management typically employs a multidisciplinary team approach. Recognition is growing that this team approach should also address palliative care issues to optimize quality of life for patient and family caregivers, but it remains unclear how palliative care is best delivered. To inspire future service development and research, we compare the trajectories and conceptualization of palliative care between dementia and Parkinson's disease. Both Parkinson's disease and dementia are characterized by a protracted course, with progressive but fairly insidious development of disability. However, patients with Parkinson's disease may experience relatively stable periods initially but with time, a wide range of debilitating symptoms develops, many of which do not respond well to treatment. Eventually, dementia develops in most Parkinson patients, while motor disability develops in many dementia patients. In both diseases, symptoms such as pain, apathy, sleeping problems, falls, and a high caregiver burden are prevalent. Advance care planning has benefits in terms of being prepared before the disease progresses into a stage with communication problems or severe cognitive impairment. However, for both conditions, the protracted disease trajectories complicate conceptualization of palliative care through different stages of the disease, with pertinent questions such as when to offer what interventions pro-actively. Given the similarities and differences, we should develop palliative approaches that are partially generic and partially disease-specific. These should be integrated seamlessly with disease-specific care. Substantial research is already being performed on dementia palliative care. This may also inform the further development of palliative care for Parkinson's disease, including an evaluation of palliative interventions and services. [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]

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: 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]

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

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

ABSTRACTBackground:We studied the patient and non-patients factors of inappropriate psychotropic drug (PD) prescription for neuropsychiatric symptoms (NPS) in nursing home patients with severe dementia.Methods: In a cross-sectional study, the appropriateness of prescriptions was explored using the Appropriate Psychotropic drug use In Dementia (APID) index sum score. This index assesses information from medical records on indication, evaluation, dosage, drug-drug interactions, drug-disease interactions, duplications, and therapy duration. Various measurements were carried out to identify the possible patient and non-patient factors. Linear multilevel regression analysis was used to identify factors that are associated with APID index sum scores. Analyses were performed for groups of PDs separately, i.e. antipsychotics, antidepressants, anxiolytics, and hypnotics.Results: The sample consisted of 338 patients with a PD prescription that used 147 antipsychotics, 167 antidepressants, 85 anxiolytics, and 76 hypnotics. It was found that older patients and more severe aggression, agitation, apathy, and depression were associated with more appropriate prescriptions. Additionally, less appropriate prescriptions were found to be associated with more severe anxiety, dementia diagnoses other than Alzheimer dementia, more physician time available per patient, more patients per physician, more years of experience of the physician, and higher nurse's workload.Conclusions: The association of more pronounced NPS with more appropriate PD prescriptions implies that physicians should pay more attention to the appropriateness of PD prescriptions when NPS are less manifest. Non-patient-related factors are also associated with the appropriateness of PD prescriptions. However, especially considering that some of these findings are counter-intuitive, more research on the topic is recommended. [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: 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]

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:Since its development, the Qualidem has had items that were considered unsuited for people with very severe dementia. This study attempted to investigate the applicability of all Qualidem items in people with all stages of dementia severity.Methods:Four data sets that contained Qualidem observations on people with dementia were combined. Dementia severity was categorized based on the Global Deterioration Scale (GDS), with a dichotomization of very severe dementia (GDS 7) and others (GDS 1–6). Unidimensional latent-trait models (Mokken scaling) were estimated to fit the Qualidem responses in the overall sample and the dichotomized groups. Scalability was assessed using coefficients of homogeneity (Loevinger's H), while reliability was assessed with Cronbach's α and ρ.Results:Combining the four databases resulted in 4,354 Qualidem measurements. The scalability of all scales was considered acceptable in the overall sample, as well is in the subgroups (all H > 0.3). Additionally, the reliability was good–excellent in the scales: “positive affect,” “positive self-image,” “care relationship,” and “negative affect.” Reliability was questionable–acceptable for “feeling at home,” “social relations,” “social isolation,” and “restless tense behavior.” Reliability was poor for “having something to do.”Conclusions:Statistical considerations allow using all Qualidem items in all dementia stages. Future research should determine balance of statistical- versus conceptual-based reasoning in this academic debate. [ABSTRACT FROM PUBLISHER]

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]

Background: To explore the aspects of daily life that give people with young-onset dementia (YOD) a sense of usefulness.Methods: Eighteen people with YOD and 21 informal caregivers participated in this qualitative study. Participants were recruited from specialized day-care centers for people with YOD in the Netherlands. Four focus groups were conducted with people with YOD, and four with informal caregivers. Focus groups were audio-recorded, transcribed, and analyzed using inductive content analysis.Results: Four themes emerged from the analysis: (1) staying engaged, (2) loss in daily life, (3) coping and adaptation, and (4) external support. Staying engaged in activities that provide a sense of usefulness or participating in leisure and recreational activities as much as possible in daily life emerged as the key theme. Retaining a sense of usefulness was considered both important and possible by having social roles or participating in functional activities. The importance of activities providing a sense of usefulness seemed to decrease over time, while the need for pleasant activities seemed to increase. Experienced loss, coping, adaptation, and available external support are important parts of the context in which the person with YOD tries to engage in daily life as much as possible. Active coping styles and external support appear to play a facilitating role in staying engaged.Conclusions: It is important for people with YOD to have the opportunity to feel useful; especially in the early stages of the condition. Caregivers should be educated in ways to enhance a sense of usefulness and engagement in daily life for people with YOD. [ABSTRACT FROM AUTHOR]

Objective: Our aim was to describe physicians' perceptions of the suffering of their patients who are dying with dementia, many of whom are incompetent with regard to decision making and have difficulty with communicating about the source of their distress and with identifying related factors.Method: We analyzed data from the nationally representative observational Dutch End-of-Life in Dementia (DEOLD) cohort study (2007-2011), which involved 34 long-term care facilities. A total of 103 physicians completed questionnaires about 330 patients with dementia who had died in a participating facility. Suffering during the last six hours of life was defined as "a patient being disturbed by or aware of symptoms," "suffering until the end or death was a struggle"-all related to objective indicators of lack of comfort. We employed generalized estimating equation models to assess associations of suffering with the characteristics of physicians and patients, the patient's death, and the decision-making process.Results: In 13.8% of cases, the physician felt that the patient had suffered. An unexpected death and death with pneumonia were strongly (an odds ratios close to 6) associated with suffering, and suffering was also independently associated with the physician's perception of worse quality of end-of-life care, death with cardiovascular disease, a less experienced physician, no palliative sedation, and a younger patient.Significance Of Results: Most patients with dementia did not suffer during their final hours of life, according to their physicians. There are a number of factors associated with suffering, among them death with pneumonia and unexpected death. We may not be able to have much influence on death from pneumonia, but quality of care and an unexpected death are reasonable targets for intervention. Earlier identification of the beginning of the dying process would allow time to better prepare for approaching death, which would provide a source of comfort. [ABSTRACT FROM AUTHOR]

Background:Young-onset dementia (YOD) is defined as dementia that develops before the age of 65 years. The prevalence and type of neuropsychiatric symptoms (NPS) in YOD differ from patients with late onset dementia. NPS in dementia patients are often treated with psychotropic drugs. The aim of this study was to investigate psychotropic drug use (PDU) in Dutch community-dwelling YOD patients and the association between age, gender, dementia etiology and severity, symptoms of depression, disease awareness, unmet needs, and type of NPS.Methods:Psychotropic drug use in 196 YOD patients was registered. Drugs were categorized according to the Anatomical Therapeutical Chemical classification. The association between age, gender, dementia type, dementia stage, type of NPS, depressive symptoms, disease awareness, and amount of unmet needs on total PDU was analyzed using binomial logistic regression analysis.Results:Fifty-two percent of the patients were prescribed at least one psychotropic drug; 36.2% of patients used one drug, and 12.2% used two different drugs. Antidepressants (36.2%) and antipsychotic drugs (17.3%) were the most frequently prescribed psychotropic drugs. Anti-dementia drugs were prescribed in 51.5% of the patients. Increasing age and moderate to severe depressive symptoms were positively associated with the total use of psychotropic drugs.Conclusions:Community-dwelling YOD patients have a high prevalence of PDU. More research is needed to study the association between unmet needs, NPS, and PDU, and psychosocial interventions have to be developed to limit the use of psychotropic drugs in YOD. [ABSTRACT FROM AUTHOR]

Background:Children of patients with young onset dementia (YOD) who are confronted with a parent who has a progressive disease, often assist in caregiving tasks, which may have a great impact on their lives. The objective of the present study is to explore the experiences of children living with a young parent with dementia with a specific focus on the children's needs.Methods:Semi-structured interviews with 14 adolescent children between the ages of 15 and 27 years of patients with YOD were analyzed using inductive content analysis. Themes were identified based on the established codes.Results:The emerging categories were divided into three themes that demonstrated the impact of dementia on daily life, different ways of coping with the disease, and children's need for care and support. The children had difficulties managing all of the responsibilities and showed concerns about their future. To deal with these problems, they demonstrated various coping styles, such as avoidant or adaptive coping. Although most children were initially reluctant to seek professional care, several of them expressed the need for practical guidance to address the changing behavior of their parent. The children felt more comfortable talking to someone who was familiar with their situation and who had specific knowledge of YOD and the available services.Conclusion:In addition to practical information, more accessible and specific information about the diagnosis and the course of YOD is needed to provide a better understanding of the disease for the children. These findings underline the need for a personal, family-centered approach. [ABSTRACT FROM AUTHOR]

Background:Little is known about care needs in young-onset dementia (YOD) patients, even though this information is essential for service provision and future care planning.We explored: (1) care needs of people with YOD, (2) the level of agreement within patient-caregiver dyads on care needs, and (3) the longitudinal relationship between unmet needs and neuropsychiatric symptoms.Methods:A community-based prospective study of 215 YOD patients-caregiver dyads. Care needs were assessed with the Camberwell Assessment of Need for the Elderly. The level of agreement between patient and caregivers’ report on care needs was calculated using κ coefficients. The relationship between unmet needs and neuropsychiatric symptoms over time, assessed with the Neuropsychiatric Inventory, was explored using linear mixed models.Results:Patients and caregivers generally agreed on the areas in which needs occurred. Only modest agreement existed within patient-caregiver dyads regarding whether needs could be met. Patients experienced high levels of unmet needs in areas such as daytime activities, social company, intimate relationships, and information, leading to an increase in neuropsychiatric symptoms.Conclusions:Our findings indicate that in YOD, there are specific areas of life in which unmet needs are more likely to occur. The high proportions of unmet needs and their relationship with neuropsychiatric symptoms warrant interventions that target neuropsychiatric symptoms as well as the prevention of unmet needs. This underlines the importance of the periodic investigation of care needs, in which patient and caregiver perspectives are considered complementary. [ABSTRACT FROM AUTHOR]

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

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]

Introduction In developed countries, substituting physicians with nurse practitioners, physician assistants and nurses (physician substitution) occurs in nursing homes as an answer to the challenges related to the ageing population and the shortage of staff, as well as to guarantee the quality of nursing home care. However, there is great diversity in how physician substitution in nursing homes is modelled and it is unknown how it can best contribute to the quality of healthcare. This study aims to gain insight into how physician substitution is modelled and whether it contributes to perceived quality of healthcare. Second, this study aims to provide insight into the elements of physician substitution that contribute to quality of healthcare. Methods and analysis This study will use a multiple-case study design that draws upon realist evaluation principles. The realist evaluation is based on four concepts for explaining and understanding interventions: context, mechanism, outcome and context–mechanism–outcome configuration. The following steps will be taken: (1) developing a theory, (2) conducting seven case studies, (3) analysing outcome patterns after each case and a cross-case analysis at the end and (4) revising the initial theory. Ethics and dissemination The research ethics committee of the region Arnhem Nijmegen in the Netherlands concluded that this study does not fall within the scope of the Dutch Medical Research Involving Human Subjects Act (WMO) (registration number 2015/1914). Before the start of the study, the Board of Directors of the nursing home organisations will be informed verbally and by letter and will also be asked for informed consent. In addition, all participants will be informed verbally and by letter and will be asked for informed consent. Findings will be disseminated by publication in a peer-reviewed journal, international and national conferences, national professional associations and policy partners in national government. [ABSTRACT FROM AUTHOR]

Background: Long-term care facilities have partly taken over the traditional asylum function of psychiatric hospitals and house an increasing group of patients with mental-physical multimorbidity (MPM). Little is known about the characteristics, behavior, and care dependency of these patients. This paper aims to describe these aspects.Methods: Explorative, descriptive study among patients with MPM without dementia (n = 142), living in 17 geronto-psychiatric nursing home (NH) units across the Netherlands, stratified by those referred from mental healthcare services (MHS) and other healthcare services (OHS). Data collection consisted of chart review, semi-structured interviews, (brief) neuropsychological testing, and self-report questionnaires. Patients referred from MHS (n = 58) and from OHS (n = 84) were compared by descriptive statistics.Results: Despite exclusion of patients with dementia, the majority of participants had cognitive impairment. Prevalence and severity of frontal impairment were high, as well as the number of patients with clinically relevant neuropsychiatric symptoms. MHS patients were younger, had more chronic psychiatric disorders, and more often used antipsychotics. Neuropsychiatric symptoms, domains of care dependency, physical conditions and concomitant medication use differed not significantly between the subgroups.Conclusions: Both groups of patients with MPM showed heterogeneity in various aspects but differed not significantly regarding the consequences of their multimorbidity. In a variety of characteristics, this group seems to be different from other NH patient groups, which requires extra knowledge and skills of the staff. To uncover which knowledge and skills are necessary, the next step should be to investigate the specific care needs of NH patients with MPM without dementia. [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: Shared decision-making (SDM) is a means of allowing people with dementia to take part in making choices, be autonomous and participate in social activities. Involving them in SDM is an important way of promoting social health. However, including families and dementia residents in decision-making can be challenging for care staff working in nursing homes. The objective of this study was to identify barriers and facilitators regarding the implementation of an SDM framework for care planning in two nursing homes, one in Italy and one in the Netherlands. Methods: Focus group interviews were conducted with healthcare professionals who, after being trained, applied the SDM framework. Content analysis was used to analyze the data. Results: Six months after the feasibility trial, focus group interviews with healthcare professionals (n = 10 in Italy; n = 9 in the Netherlands) were held. We found 6 themes and 15 categories. Within these themes, facilitators and barriers were identified. The categories of team collaboration, communication skills and nursing home policy were found to be facilitators to the implementation process, whereas regulations, lack of funding and of involvement of family caregivers were the main barriers. Family attitudes towards SDM could be both. The main difference between countries concerned the residents' cognitive status that influenced their degree of involvement. Conclusion: Communication skills training for professionals, training of family caregivers, and involvement of the management in the implementation process seem to be crucial factors in successfully implementing SDM in nursing homes, and increasing the involvement of families and dementia residents in decision-making. [ABSTRACT FROM AUTHOR]

Background: 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: This study explores the appropriateness of psychotropic drug (PD) use for neuropsychiatric symptoms (NPS) in nursing home patients with dementia.Methods: A cross-sectional study on 559 patients with dementia residing on dementia special care units in Dutch nursing homes was conducted. Appropriateness of PD use was assessed using the Appropriate Psychotropic drug use In Dementia (APID) index. The APID index score is calculated using information about individual PDs from patients' medical records. The index encompasses seven (different) domains of appropriateness, i.e. indication, evaluation, dosage, drug-drug interactions, drug-disease interactions, duplications, and therapy duration.Results: A total of 578 PDs were used for NPS by 60% of the nursing home patients. Indication, evaluation, and therapy duration contributed the most to inappropriate use. Ten per cent of the PDs scored fully appropriate according to the APID index sum score, 36% scored fully appropriate for indication, 46% scored fully appropriate for evaluation, and 58% scored fully appropriate for therapy duration. Antidepressants were used the most appropriately, and antiepileptics the most inappropriately.Conclusions: The minority of the PD use was fully appropriate. The results imply that PD use for NPS in dementia can be improved; the appropriateness should be optimized with a clinical focus on the appropriate indications, evaluations, and therapy duration. [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: People with dementia may benefit from palliative care which specifically addresses the needs of patients and families affected by this life-limiting disease. On behalf of the European Association for Palliative Care (EAPC), we recently performed a Delphi study to define domains for palliative care in dementia and to provide recommendations for optimal care. An international panel of experts in palliative care, dementia care or both, achieved consensus on almost all domains and recommendations, but the domain concerning the applicability of palliative care to dementia required revision.Methods: To examine in detail, the opinions of the international panel of 64 experts around the applicability of palliative care, we explored feedback they provided in the Delphi process. To examine which experts found it less important or less applicable, ordinal regression analyses related characteristics of the panelists to ratings of overall importance of the applicability domain, and to agreement with the domain's four recommendations.Results: Some experts expressed concerns about bringing up end-of-life issues prematurely and about relabeling dementia care as palliative care. Multivariable analyses with the two outcomes of importance and agreement with applicability indicated that younger or less experienced experts and those whose expertise was predominantly in dementia care found palliative care in dementia less important and less applicable.Conclusions: Benefits of palliative care in dementia are acknowledged by experts worldwide, but there is some controversy around its early introduction. Further studies should weigh concerns expressed around care receiving a "palliative" label versus the benefits of applying palliative care early. [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]

Background: To produce a practice guideline that includes a set of detailed consensus principles regarding the prescription of antipsychotics (APs) amongst people with dementia living in care homes.Methods: We used a modified Delphi consensus procedure with three rounds, where we actively specified and optimized statements throughout the process, utilizing input from four focus groups, carried out in UK, Norway, and the Netherlands. This was done to identify relevant themes and a set of statement that experts agreed upon using the Research and Development/University of California at Los Angeles (RAND/UCLA) methodology.Results: A total of 72 scientific and clinical experts and 14 consumer experts reached consensus upon 150 statements covering five themes: (1) General prescription stipulations, (2) assessments prior to prescription, (3) care and treatment plan, (4) discontinuation, and (5) long-term treatment.Conclusions: In this practice guideline, novel information was provided about detailed indication and thresholds of symptoms, risk factors, circumstances at which APs should be stopped or tapered, specific criteria for justifying long-term treatment, involvement of the multidisciplinary team, and family caregiver in the process of prescription. The practice guideline is based on formal consensus of clinicians and consumer experts and provides clinicians relevant practical information that is lacking in current guidelines. [ABSTRACT FROM AUTHOR]

Challenging behavior is common in nursing home residents, especially in those with dementia. Our previous study suggested that a decrease in environmental stimuli (i.e., events that take place around residents but are not specifically directed at them) in nursing homes due to restrictions during the COVID-19 pandemic, may affect residents differently. To improve future care, the experience of practitioners can be used to learn about the effects of environmental stimuli on challenging behavior in specific resident groups during the pandemic. From the perspective of practitioners, this study aimed to learn from successful initiatives and observed effects of decreased environmental stimuli on challenging behavior in residents during anti-pandemic measures. An online survey among 199 Dutch nursing home practitioners was conducted from November 2020 to January 2021. Practitioners were asked about alleged effects of diminished environmental stimuli in residents with different types of challenging behavior (i.e., psychotic, depressed, anxious, agitated, apathetic) and with mild vs. advanced or without dementia. Also, their opinion about strategies to limit environmental stimuli was explored. Residents with advanced dementia and those with psychotic and agitated behavior seemed to benefit from diminished environmental stimuli. In contrast, residents without dementia and those with depressive and apathetic behavior seemed to be negatively affected by decreased environmental stimuli. Practitioners indicated that they would like to preserve various strategies to limit environmental stimuli in the future such as reducing the use of corridors adjacent to residents' rooms. Also, they planned to use adjustments and new initiatives regarding organized activities such as an increased use of small-scale and person-oriented activities. Opinions were divided on receiving visitors in the living room and on imposing visiting hours. In open-ended questions, other initiatives were mentioned that can be useful in nursing home care. Various strategies and initiatives in nursing homes during the pandemic seem promising to meet individual needs. While many residents may be negatively affected by restrictions during the pandemic, specific resident groups may benefit from a decrease in environmental stimuli. These findings underline the importance of a good balance between stimuli and rest in the nursing home, tailored to an individual resident. [ABSTRACT FROM AUTHOR]

Anti-COVID-19 measures for preventing infections in long-term care, such as quarantine and social isolation, revealed the importance of telehealth and telecommunication. To optimize nursing home care in the future, it is important to learn from the experiences with telecommunication and telehealth during the COVID-19 pandemic. Yet, for proper implementation, it is necessary to provide a solid infrastructure, to educate and train the staff and residents regarding telecommunication, and to integrate telehealth in daily workflows (Seifert I et al. i , 2020). [Extracted from the article]

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]

Background:Neuropsychiatric symptoms (NPS) often occur in patients with dementia. Understanding the course of NPS in dementia is important for healthcare professionals for psycho-educational purposes and adequate and timely interventions to prevent or diminish NPS as much as possible.Methods:We conducted a systematic literature search in several electronic databases. We combined search strings for the terms dementia, community-dwelling, cohort studies and NPS. Screening titles and abstracts, assessing the methodological quality and data-extraction were independently conducted by at least two authors.Results:This literature search revealed 6605 unique records of which 23 studies were included in data synthesis. In total 7184 patients participated in the included studies with a mean number of 312. Sixty percent of the participants were female and the mean age of all participants was 74.8 years. Follow-up varied between 1 and 6 years; in 17 studies loss to follow-up was less than 20% per year. NPS are highly prevalent, incident and persistent although frequency parameters vary considerably across studies. Delusions/delusional misidentification, wandering/agitation, aberrant motor behavior/motor hyperactivity and apathy are the most common NPS. For hallucinations, delusions/delusional misidentification, paranoia, aggression, wandering/agitation, aberrant motor behavior/motor hyperactivity, disinhibition, apathy, and sleep disturbance increasing trends in point prevalence rates have been found.Conclusions:NPS in community-dwelling patients are frequent and persistent. The increasing trends of several NPS in the course of dementia require a preventive approach of professional caretakers. For such an approach, a timely diagnosis and adequate professional support to prevent or diminish these problems is necessary. [ABSTRACT FROM PUBLISHER]

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]