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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 nine 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. Copyright © 2009 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

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 © 2007 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Objectives: The aim of this study was to identify the direct causes of death and to evaluate the presence of burdensome symptoms in the last two days of life of terminally ill nursing home (NH) patients. Methods: Prospective study of patients with a maximum life-expectancy of six weeks in 16 nursing homes representative for the Netherlands (n = 463). Symptoms were measured after death in conscious patients with the Edmonton Symptom Assessment Scale (ESAS) and the Resident Assessment Instrument Minimum Data-Set Palliative Care (RAI MDS-PC draft 1.8). Direct causes of death were assessed in all patients. Results: Most patients died from pneumonia, renal failure or dehydration. Loss of consciousness was common. The prevalence of burdensome symptom(s) at 48 and 24 hours before death was 51.3 and 28.4%, respectively. Conclusion: In practice, it appears that, for many patients, the last days of life are spent unconscious or conscious with one or more burdensome symptom(s), which suggests the potential for improvement of symptom management. [ABSTRACT FROM AUTHOR]

The article explores factors influencing Dutch and American physician treatment decisions when using nursing home patients with dementia become acutely ill with pneumonia. Data from 12 physicians from Netherlands and 12 physicians in North Carolina who care for nursing home patients were collected. Findings revealed that Dutch physicians assumed active, primary responsibility for treatment decisions compared to American physicians who are more passive and deferential to family preferences.

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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]

Background Nursing homes (NHs) are less well studied than hospices or hospitals as a setting for terminal care. For more targeted palliative care, more information is needed about the patient characteristics, symptoms, direct causes and underlying diseases, and incidence of terminally ill NH patients. These aspects are examined in this study. Methods Prospective observational cohort study in 16 NHs representative of the Netherlands. All long-term care patients assessed by an NH physician to have a life expectancy of 6 weeks or less were enrolled in our study. Results The terminal disease phase was marked with symptoms of low fluid and food intake, general weakness, and respiratory problems or dyspnea. Direct causes of these conditions were diseases of the respiratory system (mainly pneumonia) and general disorders (eg, cachexia). The 2 main underlying diseases of the terminal phase were mental and behavioral disorders and diseases of the circulatory system. Cancer was the underlying disease in only 12% of the patients. Patients with cancer showed a different pattern of symptoms than those without cancer. Per 100 beds per year, 34 NH patients entered the terminal phase. Most patients (82.9%) died within 7 days of inclusion. Conclusions For patients without cancer in Dutch NHs, the terminal disease phase is difficult to predict, and once diagnosed, patient survival time is short. A better identification of the symptom burden might improve the prognostication of life expectancy in elderly patients. [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]

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. [ABSTRACT FROM AUTHOR]

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. [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]

Abstract: Objective: In some nursing home populations, antibiotic treatment may not reduce mortality following lower respiratory infection (LRI). To better inform treatment decisions, we determined influences on mortality following LRI among antibiotic-treated and non–antibiotic-treated residents in 2 populations. Design: Observational, prospective, cohort studies. Setting: Ninety-seven nursing homes (36 US, 61 Netherlands). Participants: Residents (1044 US, 513 Netherlands) who met a standardized study definition for LRI. Measurements: Demographics, symptoms and physical findings of LRI, functional status, major illness diagnoses, dementia status, treatments, and date of death within 6 months after diagnosis. Methods: We estimated a 2-period (0–14/15–90 days) weighted proportional hazards model of mortality for antibiotic-treated (n = 1280) and non–antibiotic-treated (n = 277) residents; both weights and regressors provide “doubly robust” risk adjustment—for LRI (illness) severity using a prognostic score and for nonrandom receipt of antibiotic treatment using a propensity score. Results: In both the United States and the Netherlands, 14-day mortality was associated with three factors—LRI severity, water intake at diagnosis, and antibiotic use (not directly by severe dementia)—that accounted for 82% or, sequentially, 39%, 42%, and 1% of the cross-national mortality difference. The LRI Severity Score (based only on at-diagnosis eating dependency, pulse rate, decreased alertness, and breathing difficulty, with adequate discrimination [c ≥ 0.74] and calibration, and cross-indexed to commonly used LRI mortality measures) was related to mortality through 90 days, regardless of treatment. With sufficient water intake at diagnosis, 14-day mortality was unrelated to not receiving antibiotic treatment (adjusted hazard ratio [AHR], 1.20; 95% confidence interval, 0.70–2.04); insufficient water intake was related to increased 14-day mortality with antibiotics (AHR, 1.90; 1.38–2.60) or without (AHR, 7.12; 4.83–10.5). After 14 days, relative mortality worsened for antibiotic-treated residents with insufficient water intake. Inadequate water intake was related to increased eating dependence at onset of the LRI (OR, 4.2; 3.0–5.8). Conclusion: LRI severity, water intake, and antibiotic use explain mortality in both studies and reconcile cross-study Dutch/US 14-day mortality differences. LRI severity, derived at 14 days, is related to mortality through 90 days, regardless of treatment, and is key to risk adjustment. With adequate hydration, the survival benefit from antibiotic use is nonsignificant. Conversely, hydration, even without antibiotic treatment, appears central to curative treatment. In LRI guidelines, treatment, and research, the relative benefits of antibiotics and hydration for curative treatment should be addressed. [Copyright &y& Elsevier]