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

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

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

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

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: 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: 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: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 PUBLISHER]

Purpose To describe the concurrent incidence of pressure ulcers, urinary tract infections, and falls in hospitals and nursing homes, and the preventive care given. Additionally, the correlation between the occurrence of these adverse events and preventive care was explored. Design and Settings A prospective, 3-month, cohort study at 10 hospitals and 10 nursing homes in the Netherlands. Participants 687 hospital patients and 241 nursing home patients. Main Outcome Measures The incidence of three adverse events and preventive care given to patients at risk. During weekly visits, the patients and their files were assessed. Additionally, observations were performed. Results Seventy-seven hospital patients (11%) and 111 nursing home patients (46%) developed one or more adverse events. The incidence rate for both types of patients, and for the three adverse events combined, was 9% adverse events per patient week. In hospitals, 34% of the patients received adequate pressure ulcer preventive care, while 47% of the patients received adequate urinary tract infection preventive care, and none of the patients received adequate falls preventive care. In nursing homes, 18% of the patients received adequate pressure ulcer preventive care, 42% of the patients received adequate urinary tract infection preventive care, and less than 1% of the patients received adequate falls prevention care. Negative or no correlations were found between the incidence rates for the three adverse events. In nursing homes the incidence of pressure ulcers and preventive care were positively correlated. Conclusions There is a high incidence of adverse events in hospitals and nursing homes. Many patients at risk do not receive adequate preventive care. [ABSTRACT FROM AUTHOR]

The article presents a study that defines the optimal palliative care in dementia. The study provides a brief overview about the disease. The study invited 89 experts from 27 countries to evaluate a two-round online survey with feedback. It also suggests the availability of immediate and full consensus on the eight domains, including the recommendations person-centered care, communication and shared decision-making and optimal treatment of symptoms.

Background/Aims: Knowledge about neuropsychiatric symptoms in young-onset Alzheimer's disease (YO-AD) is scarce, but essential to establish a prognosis and plan care for YO-AD patients. The aim of this study is to assess frequency parameters of neuropsychiatric symptoms in YO-AD over 2 years and investigate whether there are differences compared with late-onset Alzheimer's disease (LO-AD). Methods: 98 YO-AD and 123 LO-AD patients and caregivers from two prospective cohort studies were included and assessed every 6 months for 2 years, using the Neuropsychiatric Inventory to evaluate neuropsychiatric symptoms. Results: Over the course of 2 years, the incidence, prevalence and persistence of neuropsychiatric symptoms were in general lower in YO-AD than in LO-AD, specifically for delusions, agitation, depression, anxiety, apathy, irritability and aberrant motor behavior. Frequency of individual symptoms showed large variability in both groups. Within the group of YO-AD patients, apathy was the most prevalent symptom. Conclusion: Neuropsychiatric symptoms, notably apathy, should be paid appropriate attention to in the diagnosis and treatment of YO-AD patients. Further research is needed to gain insight into the mechanisms underlying the differences in neuropsychiatric symptoms between YO-AD and LO-AD. Copyright © 2012 S. Karger AG, Basel [ABSTRACT FROM AUTHOR]

Objectives To examine the clinical characteristics, motor impairments, and drug treatments of nursing home residents with Parkinson's disease ( PD). Design Cross-sectional study. Setting Nursing homes in the southeast of the Netherlands. Participants Nursing home residents with PD and a Mini- Mental State Examination score of 18 or greater seen by a physician with experience in movement disorders. Measurements Participant characteristics, motor function, and dopaminergic medications were assessed. The Short Parkinson's Evaluation Scale/ SCales for Outcomes in Parkinson's disease ( SPES- SCOPA) was used to assess motor impairments and disabilities. Results Seventy-three nursing home residents with PD (mean age 78.7; 45% male; mean disease duration 10.1 years; Hoehn and Yahr 4 (38%) and 5 (49%)) were included. Most residents were severely disabled, 49% being wheelchair bound. According to the SPES- SCOPA, 44% of residents were 'off' (in a motor state in which they are slow and stiff) most of the time. Dyskinesias were encountered infrequently. Most residents were mainly treated with levodopa monotherapy, and daily doses varied widely (20-1,600 mg, mean 673 mg); 25% of residents were treated with less than 400 mg levodopa daily, and 8% received no levodopa at all. The movement disorders specialist considered 32 residents to be possibly undertreated. Conclusion These findings show that PD in nursing home residents is characterized by severe motor impairment and a high proportion of daily 'off' time, which underscores the need for better management of PD in nursing homes, for example within specialized institutions or with periodic consultations by a movement disorders expert. [ABSTRACT FROM AUTHOR]

Objective: to identify important demographic, clinical and functional determinants of successful discharge of geriatric patients from skilled nursing facilities (SNFs), particularly the role of multi-morbidity.Design: prospective cohort study with data collection at baseline and at discharge.Setting: fifteen SNFs in the Netherlands.Participants: of 378 eligible patients, 186 were included.Methods: multi-disciplinary teams recorded demographic and disease characteristics, as well as functional status, cognitive functioning and multi-morbidity on admission. The study outcomes were discharge to an independent living situation within 1 year of admission and functional status at discharge (Barthel index).Results: of the included 186 patients, 175 were followed up. Of these patients, 123 (70%) were successfully discharged. High Berg Balance Scale (BBS) and Star Cancellation test (SCT) scores independently contributed to 48% of the variance of functional status at discharge, while low age, high BBS and SCT scores were independently related to successful discharge, explaining 33% of the variance. Multi-morbidity was not an independent determinant of rehabilitation outcome.Conclusion: geriatric patients admitted for ‘low intensity’ rehabilitation in SNFs after stroke appeared to have a fair prognosis for being successfully discharged. Postural control was an important determinant of both outcome measures. [ABSTRACT FROM PUBLISHER]

Background: With increasing age and longevity, the rising number of frail elders with complex and numerous health-related needs demands a coordinated health care delivery system integrating cure, care and welfare. Studies on the effectiveness of such comprehensive chronic care models targeting frail elders show inconclusive results. The CareWell-primary care program is a complex intervention targeting community-dwelling frail elderly people, that aims to prevent functional decline, improve quality of life, and reduce or postpone hospital and nursing home admissions of community dwelling frail elderly. Methods/design: The CareWell-primary care study includes a (cost-) effectiveness study and a comprehensive process evaluation. In a one-year pragmatic, cluster controlled trial, six general practices are non-randomly recruited to adopt the CareWell-primary care program and six control practices will deliver 'care as usual'. Each practice includes a random sample of fifty frail elders aged 70 years or above in the cost-effectiveness study. A sample of patients and informal caregivers and all health care professionals participating in the CareWell-primary care program are included in the process evaluation. In the cost-effectiveness study, the primary outcome is the level of functional abilities as measured with the Katz-15 index. Hierarchical mixed-effects regression models / multilevel modeling approach will be used, since the study participants are nested within the general practices. Furthermore, incremental cost-effectiveness ratios will be calculated as costs per QALY gained and as costs weighed against functional abilities. In the process evaluation, mixed methods will be used to provide insight in the implementation degree of the program, patients' and professionals' approval of the program, and the barriers and facilitators to implementation. Discussion: The CareWell-primary care study will provide new insights into the (cost-) effectiveness, feasibility, and barriers and facilitators for implementation of this complex intervention in primary care. [ABSTRACT FROM AUTHOR]

Objective: When it comes to dementia, caregiving can have adverse effects on the psychological and physical health of the informal caregiver. As yet, little is known about the impact of caring for a young dementia patient. This review provides an overview of the literature concerning the impact of early onset dementia (EOD) on informal caregivers and on children of EOD patients. The available literature comparing the impact on EOD and late onset dementia (LOD) caregivers will also be provided. Methods: PubMed, Psychinfo, and Cinahl were searched for articles that considered the psychological or psychosocial impact of EOD on informal caregivers and children. The methodological quality of the studies was assessed in order to make better judgments about the value of each article. Results: Seventeen articles were included, of which the overall methodological quality was limited. The results showed that EOD caregivers experienced high levels of burden, stress, and depression. When compared with LOD caregivers, results were inconclusive. Furthermore, the caregivers of EOD patients experienced a variety of psychosocial problems, including relational problems, family conflict, problems with employment, financial difficulties, and problems concerning diagnosis. Conclusions: Whether there is a difference in impact between EOD and LOD on caregivers is still unclear. The studies conducted are methodologically too limited to answer this question. Nevertheless, it is clear that EOD caregivers do seem to experience high levels of psychological suffering and specific problems related to their phase in life. [ABSTRACT FROM AUTHOR]

A letter to the editor is presented which is concerned with research which was conducted to investigate the determinants of quality of life in older adults after lower limb amputation and rehabilitation in skilled nursing facilities.

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]

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]

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]

Introduction Parkinson's disease (PD) is a complex and disabling disorder. Ultimately, 20% to 40% of patients are admitted to a nursing home, and neurologists often lose track of these patients. Care and treatment of these institutionalized patients have not been addressed comprehensively, but anecdotal reports suggest it is suboptimal. We conducted a qualitative study to analyze the quality of PD care in Dutch nursing homes from the perspective of residents, caregivers, and health care workers. Methods Experiences and (unmet) needs of 15 nursing home residents with PD and parkinsonism (90% Hoehn and Yahr stage 4 and 5) and 15 informal caregivers were assessed using semistructured interviews. Furthermore, 5 focus group discussions were organized with 13 nurses and 22 other health care professionals to explore the experiences and barriers of PD care. Results Three core unmet needs were identified: (1) unsatisfactory empathy and emotional support, according to residents and informal caregivers; (2) insufficient staff knowledge on PD-related issues, such as motor fluctuations, leading to poorly timed administration of levodopa; (3) suboptimal organization of care with limited access to neurologists and specialized PD nurses. Conclusions PD care in Dutch nursing homes is suboptimal according to residents, informal caregivers, and health care workers. Three core areas for improvement were identified, including greater attention for psychosocial problems, improved PD-specific knowledge among nursing home staff, and better collaboration with hospital staff trained in movement disorders. [ABSTRACT FROM AUTHOR]

Abstract: Background: Patient care guidelines are usually implemented one at a time, yet patients are at risk for multiple, often preventable, adverse events simultaneously. Objective: The SAFE or SORRY? programme targeted three adverse events (pressure ulcers, urinary tract infections and falls) and was successful in reducing the incidence of these events. This article explores the process of change and describes the effect on the preventive care given. Design: Separate data on preventive care were collected along the cluster randomised trial, which was conducted between September 2006 and November 2008. Settings: Ten hospital wards and ten nursing home wards. Participants: We monitored nursing care given to adult patients with an expected length of stay of at least five days. Methods: The SAFE or SORRY? programme consisted of the essential recommendations of guidelines for pressure ulcers, urinary tract infections and falls. A multifaceted implementation strategy was used to implement this multiple guidelines programme. Data on preventive care given to patients were collected in line with these guidelines and the difference between the intervention and the usual care group at follow-up was analysed. Results: The study showed no overall difference in preventive pressure ulcer measures between the intervention and the usual care group in hospitals (estimate=6%, CI: −7–19) and nursing homes (estimate=4%, CI: −5–13). For urinary tract infections, even statistically significantly fewer hospital patients at risk received preventive care (estimate=19%, CI: 17–21). For falls in hospitals and nursing homes, no more patients at risk received preventive care. Conclusion: Though the SAFE OR SORRY? programme effectively reduced the number of adverse events, an increase in preventive care given to patients at risk was not demonstrated. These results seem to emphasise the difficulties in measuring the compliance to guidelines. More research is needed to explore the possibilities for measuring the implementation of multiple guidelines using process indicators. [Copyright &y& Elsevier]

Abstract: Background: Patient care guidelines are usually implemented one at a time, yet patients are at risk for multiple, often preventable, adverse events simultaneously. Objective: This study aimed to test the effect of the SAFE or SORRY? programme on the incidence of three adverse events (pressure ulcers, urinary tract infections and falls). This paper describes Part I of the study: the effect on the incidence of adverse events. Design: A cluster randomised trial was conducted between September 2006 and November 2008. After a three-month baseline period the intervention was implemented followed by a nine-month follow-up period. Settings: Ten wards from four hospitals and ten wards from six nursing homes were stratified for institute and ward type and then randomised to intervention or usual care group. Participants: During baseline and follow-up, patients (≥18 years) with an expected length of stay of at least five days, were asked to participate. Methods: The SAFE or SORRY? programme consisted of the essential recommendations of guidelines for the three adverse events. A multifaceted implementation strategy was used for the implementation: education, patient involvement and feedback on process and outcome indicators. The usual care group continued care as usual. Data were collected on the incidence of adverse events and a Poisson regression model was used to estimate the rate ratio of the adverse events between the intervention and the usual care group at follow-up. Results: At follow-up, 2201 hospital patients with 3358 patient weeks and 392 nursing home patients with 5799 patient weeks were observed. Poisson regression analyses showed a rate ratio for the development of an adverse event in favour of the intervention group of 0.57 (95% CI: 0.34–0.95) and 0.67 (95% CI: 0.48–0.99) for hospital patients and nursing home patients respectively. Conclusion: This study showed that implementing multiple guidelines simultaneously is possible, which is promising. Patients in the intervention groups developed 43% and 33% fewer adverse events compared to the usual care groups in hospitals and nursing homes respectively. Even so, more research is necessary to underline these results. Trial registration: clinicaltrials.gov, number NCT00365430. [Copyright &y& Elsevier]

Abstract: Background: Patients in hospitals and nursing homes are at risk for the development of often preventable adverse events. Guidelines for the prevention of many types of adverse events are available, however compliance with these guidelines appears to be lacking. As a result many patients do not receive appropriate care. We developed a patient safety program that allows organisations to implement multiple guidelines simultaneously and therefore facilitates guideline use to improve patient safety. This program was developed for three frequently occurring nursing care related adverse events: pressure ulcers, urinary tract infections and falls. For the implementation of this program we developed educational activities for nurses as a main implementation strategy. Objectives: The aim of this study is to describe the effect of interactive and tailored education on the knowledge levels of nurses. Design: A cluster randomised trial was conducted between September 2006 and July 2008. Settings: Ten hospital wards and ten nursing home wards participated in this study. Prior to baseline, randomisation of the wards to an intervention or control group was stratified for centre and type of ward. Participants: All nurses from participating wards. Methods: A knowledge test measured nurses’ knowledge on the prevention of pressure ulcers, urinary tract infections and falls, during baseline en follow-up. The results were analysed for hospitals and nursing homes separately. Results: After correction for baseline, the mean difference between the intervention and the control group on hospital nurses’ knowledge on the prevention of the three adverse events was 0.19 points on a zero to ten scale (95% CI: −0.03 to 0.42), in favour of the intervention group. There was a statistically significant effect on knowledge of pressure ulcers, with an improved mean mark of 0.45 points (95% CI: 0.10–0.81). For the other two topics there was no statistically significant effect. Nursing home nurses’ knowledge did neither improve (0 points, CI: −0.35 to 0.35) overall, nor for the separate subjects. Conclusion: The educational intervention improved hospital nurses’ knowledge on the prevention of pressure ulcers only. More research on long term improvement of knowledge is needed. Trial registration: ClinicalTrials.gov ID [NCT00365430]. [Copyright &y& Elsevier]

Introduction Patients in a vegetative state/unresponsive wakefulness syndrome (VS/UWS) open their eyes spontaneously, but show only reflexive behavior. Although VS/UWS is one of the worst possible outcomes of acquired brain injury, its prevalence is largely unknown. This study's objective was to map the total population of hospitalized and institutionalized patients in VS/UWS in the Netherlands: prevalence, clinical characteristics, and treatment limitations. Methods Nationwide point prevalence study on patients in VS/UWS at least 1 month after acute brain injury in hospitals, rehabilitation centers, nursing homes, institutions for people with intellectual disability, and hospices; diagnosis verification by a researcher using the Coma Recovery Scale-revised (CRS-r); gathering of demographics, clinical characteristics, and treatment limitations. Results We identified 33 patients in VS/UWS, 24 of whose diagnoses could be verified. Patients were on average 51 years old with a mean duration of VS/UWS of 5 years. The main etiology was hypoxia sustained during cardiac arrest and resuscitation. More than 50% of patients had not received rehabilitation services. Most were given life-sustaining treatment beyond internationally accepted prognostic boundaries regarding recovery of consciousness. Seventeen (39%) of 41 patients presumed to be in VS/UWS were found to be at least minimally conscious. Conclusions Results translate to a prevalence of 0.1 to 0.2 hospitalized and institutionalized VS/UWS patients per 100,000 members of the general population. This small figure may be related to the legal option to withhold or withdraw life-sustaining treatment, including artificial nutrition and hydration. On the other hand, this study shows that in certain cases, physicians continue life-prolonging treatment for up to 25 years. Patients have poor access to rehabilitation and are at substantial risk for misdiagnosis. [ABSTRACT FROM AUTHOR]