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Objective: We present the protocol of a study aiming to examine the efficacy of a technologically-mediated storytelling intervention called Caregiver Speaks in reducing distress and grief intensity experienced by active and bereaved hospice family caregivers of persons living with dementia (PLWD)., Design: The study is a mixed-method, 2-group, randomized controlled trial., Setting: This study takes place in 5 hospice agencies in the Midwest and Northeastern United States., Participants: Participants include hospice family caregivers of PLWD., Intervention: Participants are randomized to usual hospice care or the intervention group. In the Caregiver Speaks intervention, caregivers engage in photo-elicitation storytelling (sharing photos that capture their thoughts, feelings, and reactions to caregiving and bereavement) via a privately facilitated Facebook group. This intervention will longitudinally follow caregivers from active caregiving into bereavement. The usual care group continues to receive hospice care but does not participate in the online group., Outcomes Measured: We anticipate enrolling 468 participants. Our primary outcomes of interest are participant depression and anxiety, which are measured by the Patient Health Questionnaire (PHQ-9) and the Generalized Anxiety Disorder screening (GAD-7). Our secondary outcomes of interest are participants' perceived social support, measured by the Perceived Social Support for Caregiving (PSSC) scale, and grief intensity, which is measured by the Texas Revised Inventory of Grief Present Subscale (TRIG-Present).

Background: We aimed to find the best predictive model for 14-day mortality in antibiotic-treated nursing home residents with dementia and pneumonia by first applying an existing model to the recent PneuMonitor study. Second, we evaluated whether model performance improved by revising variables or adding variables related to recent changes in the care for older people., Methods: The original prognostic model included gender, respiratory rate, respiratory difficulty, pulse rate, decreased alertness, fluid intake, eating dependency, and pressure sores. This model was applied to 380 recent pneumonia episodes in nursing home residents with dementia, updated by considering revising and/or adding variables, internally validated using bootstrapping, and transformed into a simplified risk score that can be used in clinical practice. Model performance was evaluated by Hosmer-Lemeshow statistics and calibration graphs to assess calibration; and area under the receiver operating characteristic curve (AUC) to assess discrimination., Results: The newer cohort had lower 14-day mortality and was less often dehydrated or malnourished. Median AUC of the original model over the imputed datasets was 0.76 (interquartile range: 0.76-0.77), compared to 0.80 in the old cohort. Extending the model with dehydration, bowel incontinence, increase in eating dependency and cardiovascular history, while removing pressure sores, improved AUC: 0.80 (interquartile range: 0.80-0.81) after internal validation. Calibration remained adequate (Hosmer-Lemeshow statistic: p = .67)., Conclusions: In the newer cohort with less severe illness, model performance of the existing model was adequate, but a new extended model distinguished better between residents at low and high mortality risk., (© The Author(s) 2018. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Objective: To evaluate whether a model that was previously developed to predict 14-day mortality for nursing home residents with dementia and lower respiratory tract infection who received antibiotics could be applied to residents who were not treated with antibiotics. Specifically, in this same data set, to update the model using recalibration methods; and subsequently examine the historical, geographical, methodological and spectrum transportability through external validation of the updated model., Design: 1 cohort study was used to develop the prediction model, and 4 cohort studies from 2 countries were used for the external validation of the model., Setting: Nursing homes in the Netherlands and the USA., Participants: 157 untreated residents were included in the development of the model; 239 untreated residents were included in the external validation cohorts., Outcome: Model performance was evaluated by assessing discrimination: area under the receiver operating characteristic curves; and calibration: Hosmer and Lemeshow goodness-of-fit statistics and calibration graphs. Further, reclassification tables allowed for a comparison of patient classifications between models., Results: The original prediction model applied to the untreated residents, who were sicker, showed excellent discrimination but poor calibration, underestimating mortality. Adjusting the intercept improved calibration. Recalibrating the slope did not substantially improve the performance of the model. Applying the updated model to the other 4 data sets resulted in acceptable discrimination. Calibration was inadequate only in one data set that differed substantially from the other data sets in case-mix. Adjusting the intercept for this population again improved calibration., Conclusions: The discriminative performance of the model seems robust for differences between settings. To improve calibration, we recommend adjusting the intercept when applying the model in settings where different mortality rates are expected. An impact study may evaluate the usefulness of the two prediction models for treated and untreated residents and whether it supports decision-making in clinical practice., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/)

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.

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.

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.

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: 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]