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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 © 2013. Published by Elsevier Inc.)

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 © 2012 American Medical Directors Association, Inc. Published by Elsevier Inc. All rights reserved.)

Context: Long-term care (LTC) settings have become a significant site for end-of-life care; consequently, instruments that assess the quality of dying and care may be useful in these settings., Objectives: To evaluate the content of available measurement instruments to assess the quality of dying and care when dying., Methods: Qualitative content analysis to categorize items as structure of care, process of care, satisfaction with health care (the first three representing quality of care and its evaluation), quality of dying, or patient factors., Results: Instruments that measure mostly quality of care and its evaluation are the Family Perception of Physician-Family Caregiver Communication, End-of-Life in Dementia (EOLD) Satisfaction With Care, Family Perception of Care Scale, Toolkit of Instruments to Measure End-of-Life Care after-death bereaved family member interview (nursing home version), and the Family Assessment of Treatment at the End-of-Life Short version. Instruments measuring quality of dying are the EOLD-Comfort Assessment in Dying, EOLD-Symptom Management, Mini-Suffering State Examination, and Palliative Care Outcome Scale. The Quality of Dying in Long-Term Care measures care and dying. The Minimum Data Set-Palliative Care measures mostly dying and patient factors. The instruments differ in dementia specificity, time of administration, and respondent., Conclusion: Instruments that assess quality when dying differ in several ways and most do not measure a single construct, which is relevant to guiding and evaluating care. Comparing psychometric properties and usefulness of instruments that measure similar constructs is the next step in determining which are best suited for use in LTC., (Copyright © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

Objective: To test the effectiveness of an integrative psychotherapeutic nursing home program (integrative reactivation and rehabilitation [IRR]) to reduce multiple neuropsychiatry symptoms (MNPS) of cognitively impaired patients and caregiver burden (CB)., Design: Randomized controlled trial., Setting: Psychiatric-skilled nursing home (IRR) and usual care (UC), consisting of different types of nursing home care at home or in an institution., Participants: N = 168 (81 IRR and 87 UC). Patients had to meet classification of the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition for dementia, amnestic disorders, or other cognitive disorders. Further inclusion criteria: Neuropsychiatric Inventory (NPI) ≥3; Mini-Mental State Examination ≥18 and ≤27; and Barthel Index (BI) ≥5 and ≤19., Intervention: IRR consisted of a person-oriented integrative psychotherapeutic nursing home program to reduce MNPS of the patient and CB. UC consisted of different types of nursing home care at home or in an institution, mostly emotion oriented., Measurements: Primary outcome variable was MNPS (number and sum-severity of NPI). Furthermore, burden and competence of caregiver were also measured., Assessments: T1 (inclusion), T2 (end of treatment), T3 (after 6 months of follow-up). Cohen's d (Cd) was calculated for mean differences (intention to treat). For confounding, repeated measurement modeling (random regression modeling [RRM]) was applied., Results: In the short term from the perspective of the caregiver, IRR showed up to 34% surplus effects on MNPS of the patients; NPI symptoms: 1.31 lower (Cd, -0.53); and NPI sum- severity: 11.16 lower (Cd, -0.53). In follow-up, the effects were sustained. However, from the perspective of the nursing team, these effects were insignificant, although the trend was in the same direction and correlated significantly with the caregiver results over time (at T3: r = 0.48). In addition, IRR showed surplus effects (up to 36%) on burden and competence of caregiver: NPI emotional distress: 3.78 (Cd, -0.44); CB: 17.69 (Cd, -0.63) lower; and Competence: 6.26 (Cd, 0.61) higher. In follow-up, the effects increased up to 50%. RRM demonstrated that the effects were stable., Conclusion: From the perspective of the caregiver, IRR was significantly more effective than UC to reduce MNPS in cognitively impaired patients and CB. In follow-up, the effect on CB even increased. However, from the perspective of the nursing team, the effects on MNPS were statistically insignificant. Nevertheless, the trend was in the same direction and correlated significantly with the caregiver results over time. Further research is needed, preferably using a blinded randomized controlled trial.

Objective: To provide insight into the prevalence and clinically relevant symptoms of comorbid depression among dementia patients in psychogeriatric nursing home wards, to enhance depression recognition., Design: Cross-sectional analyses of multicenter diagnostic data., Setting: Psychogeriatric wards of Dutch nursing homes., Participants: Five hundred and eighteen residents with dementia., Measurements: 1) Diagnosis of depression in dementia (Provisional Diagnostic Criteria for Depression of Alzheimer disease [PDC-dAD]), 2) dementia (Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition-PC), and 3) stage of dementia (Geriatric Depression Scale)., Results: The point prevalence of comorbid depression in dementia (Stages 2-6) on psychogeriatric nursing home wards was 19%. "Depressed mood," "irritability," and "fatigue" were the most prevalent depressive symptoms. Residents taking antidepressants at the time of the PDC-dAD depression diagnosis showed more depressive symptoms than residents who were not. The mean number of depressive symptoms was 5.6 (SD 1.84), which did not differ between the dementia stages. Also, no differences were found in the point prevalence of the shown symptoms between dementia stages., Conclusion: Irritability was put forward by the developers of the PDC-dAD, as one of the specific symptoms of depression in Alzheimer disease. This study shows that irritability is one of the most prevalent depressive symptoms in psychogeriatric nursing home residents diagnosed with comorbid depression. Irritability should therefore alert caregivers to the presence of depression and could help early recognition. The high-prevalence rate of comorbid depression in dementia in this setting justifies attention to early recognition and intervention.

The assessment and management of pain in nursing homes have been shown to be suboptimal, but no study has evaluated differences in clinical setting within these homes. The prevalence and management of pain on different care wards (psychogeriatric, somatic, and rehabilitation) was studied on 562 newly admitted Dutch nursing home residents. Pain was measured according to the Nottingham Health Profile (perceived pain) and the Minimum Data Set pain observation items (frequency and intensity). Pain frequency differed significantly across the different ward types: on psychogeriatric wards (n=247), it was 27.1%; on somatic wards (n=181), 53.9%; and on rehabilitation wards (n=129), 57.8%. Being admitted on a psychogeriatric ward was significantly related to less pain compared to being admitted on a somatic ward, even when adjusted for possible confounders such as age, gender, cognitive status, activities of daily living, pain-related disorders, and depression (odds ratio [OR] 0.38 [95% confidence interval (CI)=0.23-0.62]). Patients on psychogeriatric wards who had pain received less pain medication, adjusted for frequency and intensity of pain (OR 0.37 [95% CI=0.23-0.59]), compared to patients on somatic wards. We conclude that admission to a psychogeriatric care ward, independent of cognition, is associated with lower pain prevalence, and also with lower levels of pain treatment.

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.

Objectives: To assess incidence and outcome of depressive symptoms among nursing home (NH) patients and to identify clinical characteristics predicting onset and persistence of depressive symptoms., Methods: Depressive symptoms (GDS>10) and relevant correlates were assessed at baseline and at follow-up (6 months) in 350 NH-patients of 14 Dutch NH's with the Geriatric Depression Scale (GDS). Predictors of onset and persistence were studied using chi-square statistics and multiple logistic regression analyses., Results: The prevalence of depressive symptoms decreased from 41.3% to 28.9% during six months follow-up. The onset of depressive symptoms in those without depressive symptoms at baseline was 4.7%, while the rate of persistence was 63.3%. Persistence of depressive symptoms was more frequent in patients with higher GDS-scores (18-30) at baseline. No baseline characteristics were associated with onset of depressive symptoms. Persistence of depressive symptoms was only associated with more years of education., Conclusions: Pre-admission factors and transition may largely be responsible for depressive symptoms among nursing home patients. The observed substantial decrease in prevalence of depressive symptoms over six months is largely due to remission of depressive symptoms present at baseline. Adaptation of nursing home patients to pre-admission factors, facilitated by the nursing home environment, may explain this observed decrease of depressive symptoms. Future studies should evaluate interventions targeted at patients with higher GDS-scores (18-30).

Studies on the prediction of survival have mainly focused on hospital and hospice patients suffering from cancer. The aim of this study was to describe the predicted vs. the actual survival in terminally ill, mainly noncancer patients in Dutch nursing homes (NHs). A prospective cohort study was conducted in 16 NHs representative for The Netherlands. A total of 515 NH patients with a maximum life expectancy of 6 weeks, as assessed by an NH physician, were included. NH physicians were accurate in more than 90% of their prognoses for terminally ill--mainly noncancer--NH patients, when death occurred within 7 days. For a longer period of time, their predictions became inaccurate. In the category of patients who were expected to die within 8-21 days, predictions were accurate in 16.0%, and in the category of patients expected to die within 22-42 days, this was 13.0%. Predictions in these categories were mainly optimistic (patient died earlier) in 68.6% and 52.2%, respectively. The findings of this study suggest that accurate prediction of survival of (mainly) noncancer patients in NHs is only possible when death is imminent and seems to be dependent on an intimate knowledge of patients. Prognostication over a longer period of time tends to be less accurate, and, therefore, continues to be a challenging task for NH physicians.

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.

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.

Although efforts have been made to define optimal terminal care in palliative care units (PCUs), comprehensive longitudinal evaluations of care outcomes in PCUs at the end of life are scarce. In this study, changes in functional status (assistance needed for walking, and toilet use) and symptoms (pain, nausea, shortness of breath, depression, and anxiety) were assessed in all patients (n=355) admitted to 10 PCUs in Dutch nursing homes. Outcomes were measured at 24 hours, 48 hours, one week, and two weeks before death, and at PCU admission. Results show that functional status deteriorated from admission to one week before death, but most symptoms did not worsen in the last three weeks before death. Decreases in pain, anxiety, and nausea were observed. The results suggest that the care provided in the PCUs stabilized the symptom levels. Patients who die between two and four weeks appeared to have more favorable symptom change patterns than patients who die within two weeks, which supports the recommendation to admit eligible patients in earlier phases of their disease. Limitations include the use of proxy measures and some forms of selection bias, which may lead to underestimation of symptom levels.