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Background: Antipsychotic drugs (APD) are widely prescribed for people with dementia residing in long term care facilities (LTCFs). Concern has been expressed that such prescribing is largely inappropriate. The objective of this study is to examine if differences in facility-level prevalence of APD use in a sample of LTCFs for patients with dementia can be explained by patient and facility-related characteristics., Methods: A point prevalence study was conducted using data from the VU University Resident Assessment Instrument (VURAI) database from nursing homes and residential care facilities in the Netherlands. Patients were selected who had a diagnosis of dementia. LTCF and patient characteristics were extracted from the VURAI; facility-level resident satisfaction surveys were provided by the National Institute for Public Health., Results: In total, 20 LTCFs providing care for 1,090 patients with dementia were investigated. Overall, 31% of patients used an APD. In facilities with a high prevalence of APD use behavioral symptoms were present in 62% of their patients. In facilities with medium APD use behavioral problems remained frequent (57%), and in facilities with low prevalence of APD use 54% of the patients had behavioral symptoms. Facilities with a high prevalence of APD use were often large, situated in urban communities, and scored below average on staffing, personal care, and recreational activities., Conclusions: There was considerable variation between the participating LTCFs in the prevalence of APD use. Variability was related to LTCF characteristics and patient satisfaction. This indicates potential inappropriate prescribing because of differences in institutional prescribing culture.

Studying end of life in dementia patients is challenging because of ill-defined prognoses and frequent inability to self-report. We aim to quantify and compare (1) feasibility and (2) sampling issues between prospective and retrospective data collection specific to end-of-life research in long-term care settings. The observational Dutch End of Life in Dementia study (DEOLD; 2007 to 2011) used both prospective data collection (28 facilities; 17 nursing home organizations/physician teams; questionnaires between January 2007 and July 2010, survival until July 2011) and retrospective data collection (exclusively after death; 6 facilities; 2 teams, questionnaires between November 2007 and March 2010). Prospective collection extended from the time of admission to the time after death or conclusion of the study. Prospectively, we recruited 372 families: 218 residents died (59%) and 184 (49%) had complete physician and family after-death assessments. Retrospectively, 119 decedents were enrolled, with 64 (54%) complete assessments. Cumulative data collection over all homes lasted 80 and 8 years, respectively. Per complete after-death assessments in a year, the prospective data collection involved 37.9 beds, whereas this was 7.9 for the retrospective data collection. Although age at death, sex, and survival curves were similar, prospectively, decedents' length of stay was shorter (10.3 vs. 31.4 mo), and fewer residents had advanced dementia (39% vs. 54%). Regarding feasibility, we conclude that prospective data collection is many fold more intensive and complex per complete after-death assessment. Regarding sampling, if not all are followed until death, it results in right censoring and in different, nonrepresentative samples of decedents compared with retrospective data collection. Future work may adjust or stratify for dementia severity and length of stay as key issues to promote comparability between studies.

Background: Patients with dementia frequently do not receive adequate palliative care which may relate to poor understanding of the natural course of dementia. We hypothesized that understanding that dementia is a progressive and terminal disease is fundamental to a focus on comfort in dementia, and examined how family and professional caregivers' understanding of the nature of the disease was associated with patients' comfort during the dying process., Methods: We enrolled 372 nursing home patients from 28 facilities in The Netherlands in a prospective observational study (2007 to 2010). We studied both the families and the physicians (73) of 161 patients. Understanding referred to families' comprehension of complications, prognosis, having been counseled on these, and perception of dementia as "a disease you can die from" (5-point agreement scale) at baseline. Physicians reported on this perception, prognosis and having counseled on this. Staff-assessed comfort with the End-of-Life in Dementia - Comfort Assessment in Dying (EOLD-CAD) scale. Associations between understanding and comfort were assessed with generalized estimating equations, structural equation modeling, and mediator analyses., Results: A family's perception of dementia as "a disease you can die from" predicted higher patient comfort during the dying process (adjusted coefficient -0.8, 95% confidence interval (CI): -1.5; -0.06 point increment disagreement). Family and physician combined perceptions (-0.9, CI: -1.5; -0.2; 9-point scale) were also predictive, including in less advanced dementia. Forty-three percent of the families perceived dementia as a disease you can die from (agreed completely, partly); 94% of physicians did. The association between combined perception and higher comfort was mediated by the families' reporting of a good relationship with the patient and physicians' perception that good care was provided in the last week., Conclusions: Awareness of the terminal nature of dementia may improve patient comfort at the end of life. Educating families on the nature of dementia may be an important part of advance care planning.

Objective: To analyse possible trends in families' evaluations of the quality of end-of-life care and the quality of dying in dementia., Design: Analysis of individual patient data from 3 studies (2 solely retrospective (after death) and 1 partly prospective)., Method: We combined data on 372 residents with dementia from 38 nursing homes and 13 residential homes ('psychogeriatric' wards) over the period 2005-2010. Outcome measures were the End-of-Life in Dementia-Satisfaction With Care scale (EOLD-SWC; range: 10-40) to assess quality of, or satisfaction with, end-of-life care, and the EOLD-Comfort Assessment in Dying scale (EOLD-CAD; range: 12-42) to assess quality of dying (comfort). Regression analyses were performed with time (trend) as an independent factor and were adjusted for clustering of residents within homes. We also adjusted for differences between residents, homes, and study designs., Results: We found a consistent trend of increasing family satisfaction with end-of-life care over the years (unadjusted: 0.5 points per year increment on the EOLD-SWC, and adjusted: 1.2 points; mean total score: 32.4 (SD: 5.3)). Results for the EOLD-CAD scale (mean: 32.2 (SD: 5.7)) were inconclusive; only the exclusively retrospective data indicated increased comfort. Item- and subscale-level analyses showed that, in particular, families were more satisfied with general (comfort) measures for residents and the emotional support provided for families; further, families reported lower levels of emotional distress in residents., Conclusion: We found a positive trend of increased satisfaction with end-of-life care. Families also reported a possible increase in residents' end-of-life comfort. Ongoing surveillance of outcomes measuring end-of-life quality is important in view of the increasing healthcare budget constraints.

Background: Selective participation in retrospective studies of families recruited after the patient's death may threaten generalizability of reports on end-of-life experiences., Objectives: To assess possible selection bias in retrospective study of dementia at the end of life using family reports., Methods: Two physician teams covering six nursing home facilities in the Netherlands reported on 117 of 119 consecutive decedents within two weeks after death unaware of after-death family participation in the study. They reported on characteristics; treatment and care; overall patient outcomes such as comfort, nursing care, and outcomes; and their own perspectives on the experience. We compared results between decedents with and without family participation., Results: The family response rate was 55%. There were no significant differences based on participation versus nonparticipation in demographics and other nursing home resident characteristics, treatment and care, or overall resident outcome. However, among participating families, physicians perceived higher-quality aspects of nursing care and outcome, better consensus between staff and family on treatment, and a more peaceful death. Participation was less likely with involvement of a new family member in the last month., Conclusions: Families may be more likely to participate in research with more harmonious teamwork in end-of-life caregiving. Where family participation is an enrollment criterion, comparing demographics alone may not capture possible selection bias, especially in more subjective measures. Selection bias toward more positive experiences, which may include the physician's and probably also the family's experiences, should be considered if representativeness is aimed for. Future work should address selection bias in other palliative settings and countries, and with prospective recruitment.

Purpose: Quality of care for long-term care (LTC) residents with dementia at the end-of-life is often evaluated using standardized instruments that were not developed for or thoroughly tested in this population. Given the importance of using appropriate instruments to evaluate the quality of care (QOC) and quality of dying (QOD) in LTC, we compared the validity and reliability of ten available instruments commonly used for these purposes., Methods: We performed prospective observations and retrospective interviews and surveys of family (n = 70) and professionals (n = 103) of LTC decedents with dementia in the Netherlands., Results: Instruments within the constructs QOC and QOD were highly correlated, and showed moderate to high correlation with overall assessments of QOC and QOD. Prospective and retrospective ratings using the same instruments differed little. Concordance between family and professional scores was low. Cronbach's alpha was mostly adequate. The EOLD-CAD showed good fit with pre-assumed factor structures. The EOLD-SWC and FPCS appear most valid and reliable for measuring QOC, and the EOLD-CAD and MSSE for measuring QOD. The POS performed worst in this population., Conclusions: Our comparative study of psychometric properties of instruments allows for informed selection of QOC and QOD measures for LTC residents with dementia.

Background: Successfully introducing care innovations depends on the type of care setting, the intervention and specific circumstances. In this study the factors influencing the introduction of an evidence based nursing guideline on depression in psychogeriatric nursing home residents were studied., Methods: A mixed methods multiple case study design was used. The cases consisted of nine psychogeriatric wards participating in the intervention group of a controlled clinical trial. Eight types of data source (qualitative and quantitative) were used in the analyses. Triangulation of researchers, data and methods took place. Factors were categorized according to their organizational level: nursing home management (level 1), nursing team (level 2), CNAs (level 3), and residents (level 4)., Results: Factors influencing guideline introduction were mainly found at the levels of the nursing home management and the nursing team. Most factors concern stability of the organization and team (e.g. the inhibiting effects of reorganizations and other innovations), motivation (e.g. the facilitating presence of an opinion leader) and compatibility with current practice and vision (e.g. a facilitating emotion-oriented care vision). Factors influencing a successful application of the guideline are mainly found at CNA and resident level. At CNA level most factors relate to an emotion-oriented care vision (e.g. having a warm and creative personality). At resident level inhibiting factors mainly concern the residents' health status (e.g. feeling sick and/or having much pain). Important facilitating factors are positive attitudes of relatives and observing a reduction of depression severity., Conclusions: Special facilitating factors for the guideline introduction and application seem to be the presence of a local opinion leader and the positive attitudes of relatives. Together they can motivate a nursing team in using the guideline. After a successful introduction of the guideline it's important to focus on its consolidation in daily practice., (Copyright © 2011 Elsevier Ltd. All rights reserved.)

Objective: To study the effects of introducing a nursing guideline on depression in residents with dementia of psychogeriatric nursing home wards., Methods: A multi-center controlled clinical trial with randomization at ward level was used to study the effects of the guideline introduction. Nursing teams were trained in applying the guideline to their own residents diagnosed with depression in dementia. Key elements of the nursing guideline are increasing individualized pleasant activities and decreasing unpleasant events. Participating residents were 97 residents diagnosed with dementia and comorbid depression, from 18 psychogeriatric nursing home wards, in 9 Dutch nursing homes. Measurements took place at pre-test, post-test and follow-up. Primary outcome was severity of depression measured with the MDS/RAI-Depression Rating Scale (DRS) and the Cornell Scale for Depression in Dementia. Secondary outcome is mood as measured by the FACE-observation scale., Results: Compliance with the nursing guideline was moderate. Despite this, residents on the experimental wards showed a significant reduction in depression on the DRS. With the Cornell scale a reduction of depression was found as well, although not significantly different from that in the control group. No effects on observed mood were found., Conclusion: This study shows significant reductions in depression severity by introducing a nursing guideline on psychogeriatric nursing home wards. Better compliance with the guideline could probably enlarge the effects. Some ways to achieve enhanced compliance are: (1) additionally train non-certified nurse assistants, and (2) emphasize necessary conditions for successful introduction of the guideline to nursing team managers., (Copyright © 2010 John Wiley & Sons, Ltd.)

Background: Social engagement and depression are important outcomes for residents with dementia in long-term care. However, it is still largely unclear which differences in social engagement and depression exist in residents of various long-term care settings and how these differences may be explained. This study investigated the relationship between social engagement and depressive symptoms in long-term care dementia units, and studied whether differences in social engagement and depressive symptoms between units can be ascribed to the composition of the resident population or to differences in type of care setting., Methods: Thirty-seven long-term care units for residents with dementia in nursing- and residential homes in the Netherlands participated in the study. Social engagement and depressive symptoms were measured for 502 residents with the Minimum Data Set of the Resident Assessment Instrument. Results were analyzed using multilevel analysis., Results: Residents of psychogeriatric units in nursing homes experienced low social engagement. Depressive symptoms were most often found in residents of psychogeriatric units in residential homes. Multilevel analyses showed that social engagement and depressive symptoms correlated moderately on the level of the units. This correlation disappeared when the characteristics of residents were taken into account., Conclusions: Social engagement and depressive symptoms are influenced not only by individual characteristics but also by the type of care setting in which residents live. However, in this study social engagement and depressive symptoms were not strongly related to each other, implying that separate interventions are needed to improve both outcomes.

Background: The clinical impact of risk score use in end-of-life settings is unknown, with reports limited to technical properties., Methods: We conducted a mixed-methods study to evaluate clinical impact of a validated mortality risk score aimed at informing prognosis and supporting clinicians in decision-making in dementia patients with pneumonia. We performed a trial (n = 69) with physician-reported outcomes referring to the score's aims. Subsequently, physician focus group discussions were planned to better understand barriers to clinical impact, and we surveyed families (n = 50) and nurses practicing in nursing homes (n = 29). We finally consulted with experts and key persons for implementation., Results: Most (71%) physicians who used the score considered it useful, but mainly for its learning effects. Families were never informed of numerical risk estimates. Two focus group discussions revealed a reluctance to use a numerical approach, and physicians found that outcomes conditional on antibiotic treatment were inadequate to support decision-making. Nurses varied in their perceived role in informing families. Most families (88%) wished to be informed, preferring a numerical (43%), verbalized (35%), or other approach (18%) or had no preference (5%). Revising the score, we added an ethical framework for decision-making to acknowledge its complexity, an explanatory note addressing barriers related to physicians' attitudes, and a nurses' form., Conclusion: The combined quantitative and qualitative studies elicited: substantial barriers to a numerical approach to physicians' end-of-life decision-making; crucial information for revisions and further score development; and a need for implementation strategies that focus on education.

Background/aims: The prevalence of multiple psychiatric symptoms (MPS) in psychogeriatric patients is about 80%. MPS have negative effects on caregivers; 70-80% of caregivers are moderately to heavily burdened. We tested an integrative psychotherapeutic programme (IRR) focused on MPS as well as caregiver burden. To develop decision rules in indicating IRR, prognostic potentialities of diagnostic and functional baseline variables for a favourable outcome of IRR were identified., Methods: Patients with a DSM-IV classification of dementia, amnestic disorders or other cognitive disorders were followed in a randomised controlled trial, comparing IRR (n=81) with usual nursing home care (n=87). Assessments at T1 (intake) and T2 (6 months' follow-up)., Results: In the combined prognostic models Alzheimer dementia showed significant prognostic qualities for improvement on NPI sum severity (OR 3.01), IRR on general burden and competence of caregiver (OR 2.29 and 3.34). Cognitive functions had low prognostic value., Conclusion: Prognostic modelling of positive change on severity of MPS and caregiver burden was feasible. Applying three decision rules, all resulted in IRR as indicated intervention. It seems justified to refer psychogeriatric patients suffering from a broad range of cognitive function disorders, specifically patients with dementia of the Alzheimer type, to the IRR programme., (Copyright © 2012 S. Karger AG, Basel.)

Purpose: To test if care to relief suffering in patients with dementia who become ill with pneumonia is improving, we compared treatments in cohorts of patients with dementia and pneumonia a decade apart., Participants and Methods: We studied 61 nursing homes in The Netherlands between 1996-1998 and 54 nursing homes between 2006-2007, 53 of which had been in the earlier cohort. In 1996-1998, 706 patients with pneumonia and dementia were prospectively enrolled by 201 physicians and in 2006-2007, 72 patients by 69 physicians. Data collected included treatment, physician and patient characteristics, outcome, and additionally, in the 2006-2007 cohort only, physicians' perception of changes in treatment they generally provide., Results: The frequency of providing antibiotics was similar: 79% in the recent cohort versus 77% ten years earlier (p = 0.63) as was oral antibiotic treatment (91% of those receiving antibiotics versus 88%; p = 0.44). Treatment to relieve symptoms was provided more frequently in the more recent cohort. For example, antipyretics (54% versus 34%; p = 0.001), oxygen (29% versus 13%; p < 0.001), and opiates (22% versus 10%; p = 0.003). Differences were not explained by different case mix. Half of physicians (49%) stated they generally treat to relieve symptoms more frequently than before., Conclusions: Symptom relief to Dutch patients with dementia and pneumonia is provided more frequently than a decade ago while the rate of treatment with antibiotics is unchanged. Further studies in The Netherlands and elsewhere are needed to detect if this is a general trend.

Objective: To explore how physicians treating nursing home residents with dementia and pneumonia in the Netherlands consider prognosis in their treatment decision., Methods: Survey study with data collected between July 2006 and March 2008. Physicians (n = 69) from 54 nursing homes in the Netherlands completed a questionnaire on symptoms, treatment, and prognosis for their next dementia patient newly diagnosed with pneumonia. They were also asked a general question regarding withholding antibiotic treatment and prognosis. Outcome was assessed at least two months afterwards. Two-week mortality risk if treated with antibiotics was calculated with a validated prognostic score., Results: The patients not treated with antibiotics had high (92%) actual 2-week mortality while only 12% of patients treated with antibiotics died. Physicians believed that mortality risk was high in the untreated group and would have been only slightly lower if treated with antibiotics (mean estimated risk 73%), which was higher than predicted from the risk score (42%). In general, three-quarters of physicians considered withholding antibiotics appropriate for mortality risks between 75% and 90%., Conclusions: Prognosis is an important consideration when Dutch nursing home physicians make antibiotic treatment decisions for patients with dementia and pneumonia. This suggests they prefer not to treat with antibiotics when to do so is probably futile. Physicians in other countries may hold different views on futility, which should be addressed in larger, cross-national comparative studies.

Dementia patients frequently die after a pneumonia or prolonged intake problems. Maintaining comfort is a goal of palliative care in end-stage dementia. To compare discomfort in dementia patients dying after a pneumonia with patients dying after intake problems, and to assess associations with treatment, we combined 2 Dutch prospective studies. We selected 559 pneumonia patients and 166 patients with intake problems who had no pneumonia. Discomfort was observed with the Discomfort Scale - Dementia of Alzheimer Type (DS-DAT). Linear regression was performed with the dependent DS-DAT levels shortly before death in 314 patients who died within 2 weeks. Compared with discomfort in patients with intake problems, unadjusted and adjusted discomfort in patients with pneumonia was higher both at t 0 and before death. In adjusted analyses, antibiotic treatment (mostly oral) was associated with less discomfort before death (beta -1.1, CI -2.2 - -0.03), while invasive rehydration (received by only 8 patients) was associated with more discomfort (beta 3.5, CI 0.6 - 6.3). Death from pneumonia may cause great suffering in dementia patients. If confirmed in a study with different case mix and treatments, antibiotics may be used to decrease discomfort even when death is imminent.

Background: Although lower respiratory tract infections (LRI) cause considerable morbidity and mortality among nursing home residents with dementia, the effects of care and treatment are largely unknown. Few large prospective studies have been conducted., Methods: We pooled data from two large prospective cohort studies in 61 Dutch nursing homes and 36 nursing homes in the state of Missouri, United States. We included 551 US residents and 381 Dutch residents with dementia and LRI. Main outcome measures were 3-month mortality and decline in activities of daily living (ADL) function after 3 months compared with pre-illness status. Using multivariable multinomial logistic regression to control for confounding, we assessed associations of restraint use and antibiotic type (oral compared with parenteral), with outcomes of lower respiratory tract infection (LRI). Survival without ADL decline was the reference category., Results: After multivariable adjustment, restraint use was associated with ADL decline (OR 1.9, 95% CI 1.1-3.3). Oral antibiotics were not associated with 3-month mortality (OR 0.83; 95% CI 0.56-1.2). Severe dementia was the strongest independent predictor of decline; mortality was most strongly associated with male gender., Conclusions: Among Dutch and US nursing home residents with dementia and LRI, restrained residents suffered more decline. Parenteral antibiotic treatment was not associated with better outcome in residents at low to moderate risk of mortality. Aggressive treatment strategies may provide little benefit for the majority of nursing home residents with dementia and LRI., (Copyright (c) 2007 John Wiley & Sons, Ltd.)

Objective: Prognostic information is important for guiding palliative care planning for patients with dementia. We aim to validate a risk score that uses Minimum Data Set (MDS) to estimate 6-month mortality for nursing home residents with advanced dementia., Design: Two cohort studies., Setting: Six nursing homes in The Netherlands, and 35 nursing homes in Missouri., Participants: Long-term stay residents with advanced dementia: 288 Dutch residents and 269 residents from Missouri who also had a lower respiratory tract infection (LRI)., Measurements: Patient risk factors and 6-month mortality., Results: Six-month mortality rates were 24.3% for Dutch residents, and 36.8% for US residents. The risk score's AUROC was 0.65 (CI 0.58-0.72), and 0.64 (CI 0.58-0.71), respectively. For the large majority of residents, observed mortality in the 2 validation cohorts were comparable to the development cohort. Among the few residents identified as at very high risk according to the risk score, observed mortality was lower than expected., Conclusion: The original mortality risk score predicted 6-month mortality with reasonable accuracy in 2 validation cohorts of nursing home residents with advanced dementia. Thus, the performance of the risk score, at least over the range of low to moderate risk (up to around 40% risk of mortality), can be generalized to long-stay (versus recently admitted) residents with advanced dementia, and to those with LRI.

Objective: To examine long-term mortality and its determinants in nursing home residents with dementia diagnosed with a lower respiratory tract infection (LRI)., Setting and Patients: US (Missouri) nursing home residents (541) and Dutch residents (403) with dementia who were treated with antibiotics for an LRI., Methods: Prospective studies of nursing home-acquired LRI in the US (Missouri) and in the Netherlands. Measurements included demographics, indicators of acute illness, general health condition, intake problems, and comorbid disease. Six-month mortality rates were calculated and Cox proportional hazards models were developed for mortality up to 2 years after diagnosis., Results: Six-month mortality was 48.8% among Dutch residents and 36.4% among US residents. After multivariable adjustment, Dutch nationality was not associated with higher long-term mortality. Variables most strongly associated with long-term mortality were activity of daily living dependency and male gender. Other variables associated with outcome were diverse: respiratory difficulty, age, dehydration, congestive heart failure, decreased alertness, decubitus ulcers, Parkinson disease, weight loss/poor nutrition, and pulse rate., Conclusion: LRI is followed by substantial mortality in the months after diagnosis, indicating high frailty of nursing home residents with dementia who develop LRI. A variety of patient characteristics, including many not directly related to LRI, were consistently associated with long-term mortality in two cohorts with differing illness severity. The results are relevant for informing families, evaluating poor long-term survival in the context of care and treatment, and balancing the potential burdens and benefits of care.

Objective: To develop a Quality of Life questionnaire rated by professionals that can be used for people with dementia in different stages of the disease, living in residential settings., Method: Development was performed in two phases: item generation and pilot testing, and a field survey to evaluate the psychometric properties. For unidimensionality we used a non-parametric model from item response theory: the Mokken scaling model, and computed the corresponding scalability coefficients, using a theory driven strategy., Results: The pilot survey resulted in a list of 49 items. The field survey was performed in a sample of 238 people with dementia residing in ten nursing homes. The scalability of the subscales positive affect, negative affect, restless tense behavior, and social relations is strong (0.50 < H < 0.63); for care relationship, positive self image, feeling at home, and having something to do, scalability was moderate (0.40 < H < 0.49), and for social isolation it was weak (H = 0.34). The reliability coefficient Rho (under assumption of double monotonicity) varied from 0.60 for social isolation to 0.90 for positive affect (Cronbach's alpha varied from 0.59 to 0.89). Twenty-one of 40 items are suited for people with very severe dementia., Conclusion: The QUALIDEM is an easy to administer and sufficiently reliable rating scale that provides a QOL profile of persons with dementia in residential settings. The QUALIDEM can be used for evaluation as well as for research and practice innovation., (Copyright 2006 John Wiley & Sons, Ltd.)

Background and Aims: In many patients with dementia, the oral intake of fluids and nutrients becomes insufficient and a decision has to be made whether to start artificial nutrition or hydration (ANH). This study examines the incidence of ANH in nursing-home patients with dementia in The Netherlands, the methods of administration used, patient characteristics, and the characteristics of the ANH decision- making process., Methods: In June 2001, a postal questionnaire was sent to all nursing-home physicians (NHPs) (n=1054) in The Netherlands. The response rate was 77%., Results: Of the NHPs, 39% had started ANH during the 1-year study period, mostly by hypodermoclysis. As calculated from the total number of patients in The Netherlands, the incidence density for ANH in demented nursing-home patients was 3.4 per 100 patient-years. The most important considerations in taking this decision were the patient's physical condition, the expected result of rehydration, and the (presumed) wishes of the patient. Decisions to start hydration resembled decisions to start nutrition, but more frequently concerned incompetent patients with an intercurrent infectious disease., Conclusions: Compared with the USA literature, ANH is practised less in The Netherlands. This practice conforms to the prevailing treatment policy endorsed by the Dutch Association of Nursing-Home Physicians. In starting nutrition and/or hydration, an agreement about the (limited) duration of ANH is generally made, and the NHPs generally involve relatives and nurses in the decision-making process. Almost always, all parties involved agreed with decisions taken.

Background: Accurately defining severe dementia is important for care and prognosis, but is not explicitly included in the Minimum Data Set (MDS)., Objective: To define severe dementia using the MDS, we used data for nursing home residents with moderate to severe dementia., Methods: Two cross-sectional studies enrolled 175 residents; 89 residents from one US Veterans Affairs nursing home, and 86 residents from nine Dutch nursing homes. Measurements included the Cognitive Performance Scale (CPS; range: 0-6), activities of daily living (ADL) dependency, and the Bedford Alzheimer Nursing Severity-Scale (BANS-S; range: 7-28), a staging instrument specific for severe dementia., Results: Half of the residents received CPS scores of 5, and their BANS-S scores varied widely. There was fair agreement (kappa=0.36) between severe cognitive impairment as defined by the CPS (scores 5 and 6) and the BANS-S (score 17 or higher). Addition of an ADL dependency requirement to the CPS definition improved agreement (kappa=0.75). The observed patterns were similar but more obvious for US residents than for Dutch residents., Conclusion: Cognitively impaired residents comprise a heterogeneous group with a wide variety of function. Restriction with respect to ADL dependency allows for distinction between moderate and severe dementia. We propose the following MDS-based definition of severe dementia: a CPS score of 5 or 6 with a minimum score of at least 10 points on the MDS ADL-Short Form., (Copyright (c) 2006 John Wiley & Sons, Ltd.)

Background and Objective: Generalizability of clinical predictors for mortality from lower respiratory infection (LRI) in nursing home residents has not been assessed for residents with dementia., Study Design and Setting: In prospective cohort studies of LRI in 61 nursing homes in the Netherlands (n = 541) and 36 nursing homes in Missouri, USA (n = 564), we examined 14-day and 1- and 3-month mortality in residents with dementia who were treated with antibiotics., Results: A logistic model predicting 14-day mortality derived from Dutch data included eating dependency, elevated pulse, decreased alertness, respiratory difficulty, insufficient fluid intake, high respiratory rate, male gender, and pressure sores. After adjusting coefficients with the heuristic shrinkage factor, the 14-day model showed good discrimination and calibration in both datasets. The apparent c-statistic for the original Dutch model was 0.80 (after correction for optimism, it was 0.75); the c-statistic was 0.74 in the U.S. validation population. The models predicting 1- and 3-month mortality showed moderate performance. A scoring system for estimating 14-day mortality performed equally well as the original model., Conclusion: We identified a set of credible clinical predictors that are easily assessed and demonstrated validity in identifying residents at low risk of dying from LRI across different nursing home populations. This tool should inform decision-making for families and doctors.

Objective: For many nursing home patients in the advanced stages of dementia, a decision to start or forgo treatment has to be taken at the end of their life. It is very important for the peace of mind of all involved in such decision-making that there is agreement on which decision is in the best interest of the patient. It is thus important to investigate the attitude of physicians, nurses and relatives towards medical end-of-life decisions concerning patients with dementia, so that the policy in nursing homes can be tuned to stimulate dialogue and understanding between all parties., Methods: Fifteen statements about artificial nutrition and hydration (ANH), advance directives, hastening death, self-determination and euthanasia, and nursing home policy were presented to physicians, nurses and relatives of nursing home patients suffering from dementia., Results: In general, physicians, nurses and relatives agree on many aspects of end-of-life decision-making for nursing home patients with dementia. However, on some issues the outcomes of the decision-making may differ. Relatives attach more importance to advance directives than physicians, and have more permissive attitudes towards hastening death., Conclusion: Although physicians, nurses and relatives are all guided by the best interest of the patient, it seems that differences in religious beliefs, perspective of the patient, and responsibility can lead to different attitudes towards end-of-life decisions., Practice Implications: Physicians should discuss end-of-life decisions more openly. Physicians should be aware of the influences on attitudes and incorporate them into communication about end-of-life decisions.

Purpose: We wanted to explore factors that influence Dutch and US physician treatment decisions when nursing home patients with dementia become acutely ill with pneumonia., Methods: Using a qualitative semistructured interview study design, we collected data from 12 physicians in the Netherlands and 12 physicians in North Carolina who care for nursing home patients. Our main outcome measures were perceptions of influential factors that determine physician treatment decisions regarding care of demented patients who develop pneumonia., Results: Several themes emerged from the study. First, physicians viewed their patient care roles differently. Dutch physicians assumed active, primary responsibility for treatment decisions, whereas US physicians were more passive and deferential to family preferences, even in cases when they considered families' wishes for care as inappropriate. These family wishes were a second theme. US physicians reported a perceived sense of threat from families as influencing the decision to treat more aggressively, whereas Dutch physicians revealed a predisposition to treat based on what they perceived was in the best interest of the patient. The third theme was the process of decision making whereby Dutch physicians based decisions on an intimate knowledge of the patient, and American physicians reported limited knowledge of their nursing home patients as a result of lack of contact time., Conclusion: Physician-perceived care roles regarding treatment decisions are influenced by contextual differences in physician training and health care delivery in the United States and the Netherlands. These results are relevant to the debate about optimal care for patients with poor quality of life who lack decision-making capacity.

Aim: This paper reports an investigation of the effects of the implementation of snoezelen, or multisensory stimulation, on the quality of nursing assistants' behaviour during morning care., Background: Nursing assistants in long-term dementia care are often unaware of the impact of their behaviour on patient functioning. Snoezelen is a psychosocial intervention that might improve the quality of caregiver behaviour by combining a person-centred approach with the integration of sensory stimuli., Methods: A quasi-experimental pre- and post-test design was implemented in 12 wards for older mentally infirm patients at six nursing homes. The experimental group intervention was a 4-day in-house 'snoezelen' training, stimulus preference screening and supervision meetings. The control group received usual nursing home care. The effectiveness of the intervention was studied by analysing 250 video recordings, which were assessed by independent observers using a 4-point measurement scale developed for this study and based on Kitwood's Dialectical Framework., Results: The results showed a statistically significant increase in 'Positive Person Work' and decrease in 'Malignant Social Psychology' (total scores) after the implementation of snoezelen. Nursing assistants in the experimental group also improved by statistically significant amounts on all subitems of 'Positive Person Work'. The mean number of sensory stimuli, offered explicitly, increased., Conclusion: The implementation of snoezelen succeeded in effecting a change to a more person-centred approach during morning care. The results indicate that nursing assistants' behaviour can be positively changed provided that the new care model has been successfully implemented.

Objective: To investigate the effectiveness of snoezelen, integrated in 24-hour care, on the communication of Certified Nursing Assistants (CNAs) and demented nursing home residents during morning care., Methods: A quasi-experimental pre- and post-test design was conducted, comparing sic psychogeriatric wards, that implemented snoezelen, to six control wards, that continued in giving usual care. Measurements were performed at baseline and 18 months after a training 'snoezelen for caregivers'. Independent assessors analysed 250 video-recordings directly from the computer, using an adapted version of the Roter Interaction Analysis System (RIAS) and non-verbal measurements., Results: Trained CNAs showed a significant increase of resident-directed gaze, affective touch and smiling. The total number of verbal utterances also increased (more social conversation, agreement, talking about sensory stimuli, information and autonomy). Regarding residents, a significant treatment effect was found for smiling, CNA-directed gaze, negative verbal behaviours (less disapproval and anger) and verbal expressed autonomy., Conclusion: The implementation of snoezelen improved the actual communication during morning care., Practice Implications: Teaching CNAs to provide snoezelen has added value for the quality of care. Morning care by trained CNAs appeared to take more time. This suggests that (some) time investment might be required to achieve positive effects on CNA- resident communication.

Background: While there is debate about whether it may be better to forgo than to initiate artificial nutrition and hydration (ANH) in nursing home patients with severe dementia, the consequences of forgoing ANH in these patients, in particular their discomfort, have not yet been investigated., Methods: In this prospective, longitudinal, observational study of 178 patients in Dutch nursing homes, discomfort was measured at all measurement times according to the observational Discomfort Scale-Dementia of Alzheimer Type. Furthermore, at all measurement times, plausible determinants of discomfort were registered. Data were analyzed with the statistical technique of generalized estimated equations., Results: Decisions to forgo ANH were made most often in severely demented, female patients with an acute illness as the most important diagnosis at that time. The mean level of discomfort was highest at the time of the decision and decreased in the days thereafter. There were substantial differences in level of discomfort between patients. Dyspnea, restlessness, and physicians' observations of pain and dehydration were associated with higher levels of discomfort. Furthermore, patients who were awake had higher levels of observed discomfort than patients who were asleep., Conclusions: Forgoing ANH in patients with severe dementia who scarcely or no longer eat or drink seems, in general, not to be associated with high levels of discomfort. The individual differences emphasize the need for constant attention for possible discomfort.

When patients with severe dementia become acutely ill, little is known about the extent to which physicians take actions intended to hasten death. For 143 nursing home patients with dementia who died of pneumonia after a decision not to treat with antibiotics, we asked Dutch facility-employed physicians whether they intended to hasten death and any estimated life shortening. In 53% of cases, the physicians reported an explicit intention to hasten death; in another 41% of cases they reported taking into account a probability or certainty that the withholding of antibiotics or other palliative treatments would hasten death. Opiates were frequently used for symptom control (43%), but the administration of medications specifically intended to induce death was rare (2%). Considering all treatments, physicians estimated that life was shortened by 24 hours or less in 46% of patients and 1 month or longer in 24% of patients. The frequent withholding of antibiotics with an intention to hasten death may reflect a willingness to abandon a cure-oriented approach in dying patients for whom prolongation of life is not an aim. The results reflect the importance of explicit goals for medical interventions in patients with end-stage dementia where life-prolonging treatments may be seen as prolonging suffering.

Unlabelled: The aim of this study was to assess the Palliative care Outcome Scale (POS) for terminally ill nursing home (NH) patients in the Netherlands., Methods: A prospective observational study of patients with a life-expectancy of six weeks or less in 16 Dutch NHs. NH staff rated the patient characteristics and measured palliative care with the POS, including items on physical, psychosocial, informational, spiritual and practical aspects., Results: POS nonscores (not applicable; unknown) were mainly found in the psychosocial and spiritual domains, particularly in patients with dementia. Mean scores for non-demented patients and patients with dementia were favourable for the majority of the POS items., Conclusion: According to the NH staff, fairly good quality care was provided, but the psychosocial and spiritual aspects of care need to be addressed more in the last days of the dying NH patient's life. The results indicate that the POS is an appropriate instrument to assess not only cancer patients, but also non-cancer and (moderately) severely demented patients.

Objective: To provide an overview of QOL measures applicable for research in dementia, the scale content, method of data collection, and their psychometric properties., Method: Literature research., Results: Six dementia-specific QOL measures were identified, eight generic measures were used in a demented population, and three dementia-specific measures related to QOL are described as well. Measures vary considerably in scale content, and method of data collection. Reliability indexes were always available, support of instrument validity was often reported, but reports of responsiveness to change were found only for two dementia-specific QOL measures., Conclusion: When the interest is primarily on people with dementia, a dementia-specific instrument is to be preferred. Further clarification of the concept of QOL and particularly its relation to disease severity is required.

Background: To help decision makers plan treatment, the authors assessed clinical predictors of mortality from nursing home-acquired pneumonia in patients with dementia., Methods: Pneumonia patients treated without (n = 165) or with antibiotics (n = 541) were enrolled in a prospective cohort study in 61 nursing homes., Results: In both groups, clinical judgment of illness severity was a strong predictor for 1-week mortality. Despite large differences in frailty and mortality (83% in untreated patients and 15% in treated patients), separate multivariable logistic models included similar specific predictors., Discussion: Despite profound differences between the 2 independent groups, predictors for short-term mortality were largely similar. We found that, when combined with physicians' clinical judgment, 3 readily assessed predictors (respiratory rate, fluid intake, and eating dependency) helped predict mortality. Our results, if confirmed in an independent population, can help make decision making about antibiotic treatment of pneumonia in patients with dementia more evidence-based.

Objectives: To investigate the effectiveness of snoezelen, integrated in 24-hour daily care, on the behavior and mood of demented nursing home residents., Design: Quasiexperimental pre- and posttest design., Setting: Twelve psychogeriatric wards of six nursing homes, spread over different parts of the Netherlands., Participants: One hundred twenty-five patients with moderate to severe dementia and care dependency were included in the pretest and 128 in the posttest; 61 were completers (included in both pre- and posttest)., Intervention: Experimental subjects received an individual 24-hour snoezel program, based on family history taking and stimulus preference screening. Caregivers were trained, and (organizational) adaptations were made to fulfill the conditions for resident-oriented snoezel care. The control group received usual nursing home care., Measurements: Observations were made on the wards using subscales of the Dutch Behavior Observation Scale for Psychogeriatric Inpatients, the Dutch version of the Cohen-Mansfield Agitation Inventory, and the Cornell Scale for Depression in Dementia. Independent assessors observed video recordings of morning care and rated residents' behavior and mood using INTERACT and FACE, respectively., Results: Residents receiving snoezel care demonstrated a significant treatment effect with respect to their level of apathetic behavior, loss of decorum, rebellious behavior, aggressive behavior, and depression. During morning care, the experimental subjects showed significant changes in well-being (mood, happiness, enjoyment, sadness) and adaptive behavior (responding to speaking, relating to caregiver, normal-length sentences)., Conclusion: Snoezel care particularly seems to have a positive effect on disturbing and withdrawn behavior. The results suggest that a 24-hour integrated snoezel program has a generalizing effect on the mood and behavior of demented residents.

Objective: The purpose of this study is to investigate the characteristics of patients for whom it is decided to forgo artificial nutrition and hydration (ANH) and characteristics of the ANH decision-making process. We conducted an observational study with the use of written questionnaires. For 178 nursing home patients with dementia, the treating nursing home physician (NHP), a family member, and a nurse filled out a questionnaire directly after the decision was made to forgo ANH., Results: We found that most patients had severe dementia and two thirds had an acute illness. Advance care planning had taken place in 68% of the cases. In two thirds of the cases, the primary aim in forgoing ANH was to avoid unnecessary prolongation of life; and nurses seemed to have less influence on the decision-making process than NHPs and family members. Almost all respondents evaluated the decision-making process as "good" or "adequate." Dissatisfaction was felt when the decision had to be made under the pressure of time constraint., Conclusions: On the basis of these results, we recommend that discussions that include NHPs, family members, and nurses concerning decisions about possible future situations be held on a regular basis. This will form the basis for the difficult ANH decision and will probably reduce the pressure of time constraint.

Many intervention studies lack an investigation of the extent to which the intervention was implemented as intended, which makes outcome measures difficult to interpret. The aim of the present study was to gain insight into the implementation process of snoezelen in 24-h dementia care. The intervention in each of six experimental wards comprised training sessions in 'snoezelen for caregivers', evaluated using a questionnaire. To study experience with implementation, the follow-up and general meetings (20 in total) were attended and semi-structured interviews (six in total) were conducted. The results indicated that the implementation of snoezelen effected a change from task-oriented care to resident-oriented care. The nursing assistants also experienced changes at the resident level and organisational changes. However, the lack of intervention in the organisational structure and obstructive factors such as under-staffing seemed to get in the way of the integration of multi-sensory stimulation in the daily care in two of the six wards.

Objectives: To compare treatment of nursing home residents with dementia and lower respiratory tract infection (LRI) in Missouri and the Netherlands., Design: Two separate but simultaneous prospective cohort studies., Setting: Nursing homes in Missouri (n=36) and the Netherlands (n=61)., Participants: Selected residents (701 from Missouri and 551 from the Netherlands) diagnosed with LRI and dementia., Measurements: Treatment, dementia severity, symptoms and signs of LRI, and general health condition were recorded at the time of diagnosis of LRI. Death was monitored at follow-up. Treatment and mortality, stratified for dementia severity, are reported., Results: Treatment of nursing home-acquired LRI in Missouri residents involved a larger number of antibiotics, more frequent hospitalization, and greater use of intravenous antibiotics and rehydration therapy than in Dutch residents of equal dementia severity. Furthermore, for Missouri residents, intensive interventions were more often provided irrespective of severe dementia. By contrast, in both countries, treatments to relieve symptoms of LRI were provided for only a minority of residents. Dutch mortality rates were higher overall., Conclusion: Care for U.S. nursing home residents with LRI and dementia is more aggressive than care for Dutch residents, particularly in residents with severe dementia. These results are relevant to the debate on optimal care in relation to curative or palliative treatment goals.

Aim: To describe the nature of problems nurses face when feeding nursing home patients with severe dementia, and how they deal with these problems., Background: In our study on starting or withholding artificial nutrition and hydration for nursing home patients with dementia, we found that many problems in feeding arose (long) before any decision was made about artificial feeding, namely from the first moment a patient needed help with meals. Because 'ordinary feeding' was experienced as a daily recurring problem for nurses, we decided to investigate this within the study., Methods: Participant observation by two researchers in two Dutch nursing homes., Findings: Nurses interpreted the aversive behaviour of patients differently, and a link between interpretation and responses (stop or continue feeding) was observed. Differences in interpretation with regard to the same patient were observed in nurses in five of the seven units. Only in three units did nurses discuss their different interpretations in an attempt to find out why a patient avoided food and fluids and how to deal with these problems., Conclusions: Nurses' interpretations of aversive behaviour of patients differ. No definite conclusions can be drawn about the causes of the aversive behaviour observed, because they cannot be verified. We recommend that interpretations of the behaviour of particular patients should be discussed by nurses with physicians, other disciplines and the patient's family to obtain more insight into all its possible causes and to determine together the most likely interpretation and appropriate way in which to deal with the aversive behaviour. This would give nurses more confidence and improve the quality and continuity of care provided. To structure the search for possible causes of aversive behaviour, we developed a framework of causes of aversive behaviour and domains of functioning.

Purpose: A focus on palliative care for residents with dementia is much more common in Dutch nursing homes than in the United States. We compared treatment and mortality in U.S. and Dutch nursing home residents with lower respiratory infections (LRI), which are often the immediate cause of death in dementia., Design and Methods: We studied two prospective cohorts--a study of pneumonia (n = 706) conducted in 61 psychogeriatric nursing homes throughout the Netherlands and 701 subjects with likely dementia from a study of LRIs in 36 nursing homes in Missouri., Results: Nursing home residents with dementia were more often treated without antibiotics in the Netherlands (23%) than in Missouri (15%). Indicators of severe illness operate in opposite directions: more severe illness is associated with antibiotic treatment in the United States, but with palliative treatment without antibiotics in the Netherlands., Implications: Our findings are consistent with others in indicating problems with transition to palliative care for U.S. nursing home residents with dementia.

Objectives: To assess suffering in demented nursing home patients with pneumonia treated with antibiotics or without antibiotics. This study should provide the first empirical data on whether pneumonia is a "friend" or an "enemy" of demented patients and promote a debate on appropriate palliative care., Design: Prospective cohort study., Setting: Psychogeriatric wards of 61 nursing homes in the Netherlands., Participants: Six hundred sixty-two demented patients with pneumonia treated with (77%) or without (23%) antibiotics., Measurements: Using an observational scale (Discomfort Scale-Dementia of Alzheimer Type), discomfort was assessed at the time of the pneumonia treatment decision and periodically thereafter for 3 months or until death. (Thirty-nine percent of patients treated with antibiotics and 93% of patients treated without antibiotics died within 3 months.) Physicians also offered a retrospective judgment of discomfort 2 weeks before the treatment decision. In addition, pneumonia symptoms were assessed at baseline and on follow-up. Linear regression was performed with discomfort shortly before death as an outcome., Results: A peak in discomfort was observed at baseline. Compared with surviving patients treated with antibiotics, the level of discomfort was generally higher in patients in whom antibiotic treatment was withheld and in nonsurvivors. However, these same patients had more discomfort before the pneumonia. Breathing problems were most prominent. Shortly before death from pneumonia, discomfort increased. Discomfort was higher shortly before death when pneumonia was the final cause of death than with death from other causes., Conclusion: Irrespective of antibiotic treatment, pneumonia causes substantial suffering in demented patients. Adequate symptomatic treatment deserves priority attention.

Background: Pneumonia is a life-threatening disease in nursing home patients with dementia. Physicians and families face choices about whether to withhold antibiotics when patients are expected to die soon or when treatment may be burdensome. However, little information exists on what factors influence this complex decision-making process., Objective: To identify factors associated with decisions on whether to withhold curative antibiotic treatment in patients with dementia who have pneumonia., Methods: We performed an observational cohort study with 3-month monitoring for cure and death. Patients with pneumonia (N = 706) were enrolled in nursing home units for patients with dementia from all over the Netherlands (61 nursing homes). Characteristics of patients, physicians, and facilities were related to the outcome of withholding antibiotic treatment., Results: In 23% of the patients, antibiotic treatment was withheld. The other patients received antibiotics with palliative (8%) or curative (69%) intent. Compared with the patients who received antibiotics with curative intent, patients in whom antibiotic treatment was withheld had more severe dementia, had more severe pneumonia, had lower food and fluid intake, and were more often dehydrated. In addition, withholding antibiotics occurred more often in the summer and in patients with an initial episode of pneumonia. Characteristics of facilities and physicians were unrelated to the decision. However, considerable variation occurred in how patient age, aspiration, and history of pneumonia were related to decision making by individual physicians., Conclusions: In the Netherlands, antibiotic treatment is commonly withheld in pneumonia patients with severe dementia who are especially frail. Understanding the circumstances in which this occurs can illuminate the international discussion of appropriate dementia care.

Objectives: To assess whether the severity of dementia is related to unfavorable outcomes of nursing home-acquired pneumonia and how this relationship is mediated., Design: Prospective cohort study., Setting: Psychogeriatric wards of 61 nursing homes in the Netherlands., Measurements: Dementia severity and the possible mediators swallowing disturbance, aspiration, insufficient food intake, weight loss, and dehydration were measured and related to the following outcomes: death (rate), cure rate, and increase in discomfort at the onset of pneumonia., Participants: Demented patients (n = 374) treated with antibiotics for pneumonia., Results: Dementia severity was independently related to death rate within the first week after pneumonia (hazard rate ratio = 3.0 for the most severely demented quartile versus the least demented quartile, 95% confidence interval (CI) = 1.1-8.3) and to 3-month mortality (odds ratio (OR) 2.5, 95% CI = 1.1-5.4). The latter relation was in part mediated by aspiration and weight loss (OR dementia severity adjusted for these mediators declined from 2.5 to 1.9, 95% Cl = 0.8-4.3). Dementia severity was not related to cure rate within 2 weeks nor to an in-crease in discomfort after 3 days compared with before the pneumonia., Conclusion: The functional and pathophysiological consequences of progressive dementia account in part for increased 3-month mortality after pneumonia. Mid-term mortality is expected to be high only in the most severely demented patients and in less severely demented patients who aspirated or who lost weight. Implications for end-of-life decision-making and effectiveness of preventive and curative interventions are discussed.

Highlights: [•] We investigate social networks of nursing staff in long-term care. [•] We examine if networks are related to behaviour towards residents with dementia. [•] Behaviour is more positive when more networks with relatives of residents exist. [•] Moreover, networks are positively related to staff's organizational identification. [•] Identification in turn is connected to work motivation and behaviour of staff. [Copyright &y& Elsevier]

Objective To validate the QUALIDEM, a quality of life measure for people with dementia within residential settings rated by professional caregivers. Method In a sample of 202 residents of nursing homes Spearman rank correlations were calculated between the QUALIDEM subscales aand indices of convergent validity and discriminant validity, with dementia severity and need of care, with global QOL scores by the head nurse and family, and with self-report on COOP/WONCA Charts. Results The one-method multi-trait matrix showed 90.5% of the correlations to be in support for convergent and discriminant validity. Low to moderate correlations were observed with dementia severity and need of care, confirming that QOL is not merely disease severity. Support for concurrent validity was found in correlations with QOL ratings by the head nurse. The QUALIDEM did not correlate with most of the family ratings or with the COOP/WONCA Charts. Conclusion The results of this validation study together with the obtained content validity through the method of construction provide sufficient support for validity of the QUALIDEM to be used for care evaluation and research in residential settings. Copyright © 2006 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

The article relates the study on the characteristics of Dutch nursing home patients with severe dementia in whom artificial nutrition and hydration is forgone. It was found out that patients with dyspnea and/or apathy were more likely to die during follow-up than patients without these symptoms. It was concluded that clinical judgment of the nursing home physician of the severity of illness seemed to be a strong predictor of patient survival.

Examines the effects of the implementation of snoezelen on the quality of working life in psychogeriatic care. Dementia among nursing home residents is often accompanied by high care dependency and behavioral disturbances; Measurements on workload, perceived problems, stress reactions, job satisfaction and burnout; Influence of multi-sensory programs on work-related outcomes of staff personnel involved in such an approach.

Provides information on the concept of quality of life in dementia in the different stages of the disease. Determination of the multidimensional evaluation of the person-environment system of the individual; Terms of the perceived consequences of the dementia; Incidence of chronic diseases; Designation of life satisfaction as the outcome of interest of the major theories of successful aging.

To investigate the effect of chronic diseases and disease combinations on 1-year mortality in nursing home residents.Retrospective cohort study using electronically submitted Minimum Data Set (MDS) information and Missouri death certificate data.Five hundred twenty-two nursing homes in Missouri.Forty-three thousand five hundred ten nursing home residents with a full MDS assessment in 1999.Information about chronic diseases, age, sex, and performance in activities of daily living (ADLs) available from the first full MDS 2.0 assessment in 1999; death within 1 year after the first full MDS-assessment in 1999.After adjustment for age and sex, eight variables were predictive for 1-year mortality: seven chronic diseases (dementia, cancer, heart failure, renal failure, emphysema/chronic obstructive pulmonary disease, diabetes mellitus, and anemia) and an interaction variable containing age and cancer. Adding terms for disease combinations (e.g., diabetes mellitus and heart failure) did not enhance survival prediction. When there was also adjustment for ADL performance as measured using the MDS-ADL Short Form, dementia and anemia were not included, because they had no prognostic value above that of the other variables.Several chronic diseases were associated with 1-year mortality in the institutionalized elderly after adjustment for ADL performance, age, and sex. Evidence of a synergistic effect of disease combinations on mortality is lacking. [ABSTRACT FROM AUTHOR]

To investigate the effectiveness ofsnoezelen, integrated in 24-hour daily care, on the behavior and mood of demented nursing home residents.Quasiexperimental pre- and posttest design.Twelve psychogeriatric wards of six nursing homes, spread over different parts of the Netherlands.One hundred twenty-five patients with moderate to severe dementia and care dependency were included in the pretest and 128 in the posttest; 61 were completers (included in both pre- and posttest).Experimental subjects received an individual 24-hoursnoezelprogram, based on family history taking and stimulus preference screening. Caregivers were trained, and (organizational) adaptations were made to fulfill the conditions for resident-orientedsnoezelcare. The control group received usual nursing home care.Observations were made on the wards using subscales of the Dutch Behavior Observation Scale for Psychogeriatric Inpatients, the Dutch version of the Cohen-Mansfield Agitation Inventory, and the Cornell Scale for Depression in Dementia. Independent assessors observed video recordings of morning care and rated residents' behavior and mood using INTERACT and FACE, respectively.Residents receivingsnoezelcare demonstrated a significant treatment effect with respect to their level of apathetic behavior, loss of decorum, rebellious behavior, aggressive behavior, and depression. During morning care, the experimental subjects showed significant changes in well-being (mood, happiness, enjoyment, sadness) and adaptive behavior (responding to speaking, relating to caregiver, normal-length sentences).Snoezelcare particularly seems to have a positive effect on disturbing and withdrawn behavior. The results suggest that a 24-hour integratedsnoezelprogram has a generalizing effect on the mood and behavior of demented residents. [ABSTRACT FROM AUTHOR]

Objective To examine different conceptual models of negative symptoms in Alzheimer's disease. Design Confirmatory factor analysis of cross-sectional data. Subjects Alzheimer patients (n =281) admitted to a psychogeriatric observation ward. Materials Nurses' Behavioural observation scale for psychogeriatric inpatients (GIP). Global clinical ratings of severity of dementia and depression based on the Cambridge Examination for Mental Disorders of the Elderly-Dutch version (CAMDEX-N). Results A unidimensional model of dementia fitted the data poorly. Multidimensional models produced better results. In two- and three-factor models negative symptoms were separated from cognitive impairment and mood disturbances. The more severe the memory impairment, the more socially withdrawn patients were. In this sense negative symptoms may have been secondary to cognitive decline. However, no association was found between negative symptoms and mood disturbances. Conclusions Negative symptoms are a prominent clinical feature of Alzheimer's disease and they are related to memory impairment but not to mood disturbances. Copyright © 2003 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Abstract: Objectives: To compare available instruments and investigate which best measure the quality of end-of-life care (QOC) and quality of dying (QOD) in long term care settings, in terms of validity, reliability, and feasibility. Design: Family and professional caregivers of long term care decedents completed postdeath interviews and questionnaires between November 2007 and April 2009. Setting: Nursing home and residential care/assisted living settings in the United States and the Netherlands. Participants: Two hundred and sixty four families of decedents with (48%) and without (52%) dementia in the United States, and 70 families and 103 professional caregivers of decedents with dementia in the Netherlands. Measurements: Ten instruments to evaluate the QOC and QOD in long term care, an additional overall assessment of QOC/QOD, and an assessment of the perception of the relevance and ease of use of each instrument. Criteria for validity, reliability, and feasibility were set forth for good, intermediate, and poor performance. Results: None of the instruments scored positively on all criteria. In both countries, of the QOC instruments, the End-of-Life in Dementia-Satisfaction With Care (EOLD-SWC) best met the criteria, followed by the Family Assessment of Treatment at the End-of-Life Short Version, the Family Perception of Care Scale, and Family Perception of Physician-Family Caregiver Communication. Of the QOD instruments, the End-of-Life in Dementia–Comfort Assessment at Dying (EOLD-CAD) and Mini-Suffering State Examination (MSSE) met more of the criteria than others. The EOLD-CAD performed better on content and construct validity than the MSSE. The MSSE performed better on feasibility. Conclusion: We recommend the EOLD-SWC to measure QOC, and the EOLD-CAD and MSSE to measure QOD in populations with dementia and in mixed long term care populations of nursing home or residential care home/assisted living residents, because they performed best in both countries. Use of the same instruments allows for comparison of the results between studies. [Copyright &y& Elsevier]