Search

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: There is an 80% prevalence of two or more psychiatric symptoms in psychogeriatric patients. Multiple psychiatric symptoms (MPS) have many negative effects on quality of life of the patient as well as on caregiver burden and competence. Irrespective of the effectiveness of an intervention programme, it is important to take into account its economic aspects., Methods: The economic evaluation was performed alongside a single open RCT and conducted between 2001 and 2006. The patients who met the selection criteria were asked to participate in the RCT. After the patient or his caregiver signed a written informed consent form, he was then randomly assigned to either IRR or UC.The costs and effects of IRR were compared to those of UC. We assessed the cost-utility of IRR as well as the cost-effectiveness of both conditions. Primary outcome variable: severity of MPS (NPI) of patients; secondary outcome variables: general caregiver burden (CB) and caregiver competence (CCL), quality of life (EQ5D) of the patient, and total medical costs per patient (TiC-P). Cost-utility was evaluated on the basis of differences in total medical costs). Cost-effectiveness was evaluated by comparing differences of total medical costs and effects on NPI, CB and CCL (Incremental Cost-Effectiveness Ratio: ICER). CEAC-analyses were performed for QALY and NPI-severity. All significant testing was fixed at p<0.05 (two-tailed). The data were analyzed according to the intention-to-treat (ITT)-principle. A complete cases approach (CC) was used., Results: IRR turned out to be non-significantly, 10.5% more expensive than UC (€ 36 per day). The number of QALYs was 0.01 higher (non-significant) in IRR, resulting in € 276,290 per QALY. According to the ICER-method, IRR was significantly more cost-effective on NPI-sum-severity of the patient (up to 34%), CB and CCL (up to 50%), with ICERs varying from € 130 to € 540 per additional point of improvement., Conclusions: No significant differences were found on QALYs. In IRR patients improved significantly more on severity of MPS, and caregivers on general burden and competence, with incremental costs varying from € 130 to € 540 per additional point of improvement. The surplus costs of IRR are considered acceptable, taking into account the high societal costs of suffering from MPS of psychogeriatric patients and the high burden of caregivers. The large discrepancy in economic evaluation between QALYs (based on EQ5D) and ICERs (based on clinically relevant outcomes) demands further research on the validity of EQ5D in psychogeriatric cost-utility studies. (Trial registration nr.: ISRCTN 38916563; December 2004).

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: In this paper, we aim to test the long-term benefit of an integrative reactivation and rehabilitation (IRR) program compared to usual care in terms of improved psychogeriatric patients on multiple psychiatric symptoms (MPS) and of caregivers on burden and competence. Improvement was defined as >30% improvement (≥ a half standard deviation) compared to baseline., Methods: We used the following outcome variables: difference in the number of improved patients on MPS (Neuropsychiatric Inventory, NPI) and improved caregivers on burden (Caregiver Burden, CB) and competence (Caregiver Competence List, CCL). Assessments were taken after intake (T1) and after six months of follow-up (T3). Risk ratios (RR), number needed to treat (NNT), and odds ratios (ORs) were calculated., Results: IRR had a significant positive effect on NPI-cluster hyperactivity (RR 2.64; 95% CI: 1.26-5.53; NNT 4.07). In the complete cases analysis, IRR showed significant ORs of 2.80 on the number of NPI symptoms and 3.46 on the NPI-sum-severity; up to 76% improved patients. For caregivers, competence was a significant beneficiary in IRR (RR 2.23; 95% CI: 1.07-4.62; NNT 5.07). In the complete cases analysis, the ORs were significantly in favor of IRR on general burden and competence (ORs range: 2.40-4.18), with up to 71% improved caregivers., Conclusion: IRR showed a significantly higher probability of improvement with a small NNT of four on multiple psychiatric symptoms in psychogeriatric patients. The same applies to the higher probability to improve general burden and competence of the caregiver with an NNT of five. The results were even more pronounced for those who fully completed the IRR program. (Inter)national psychogeriatric nursing home care and ambulant care programs have to incorporate integrative psychotherapeutic interventions.

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.

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.)

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.

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.)

Aims and Objectives: The aim of this study was to develop an observational scale to measure the social well-being of nursing home residents, by assessing not only the social behaviour of the resident towards others, but also the behaviour of others towards the resident., Background: Traditionally, aspects of the social well-being of nursing home residents are assessed according to the social activities and interactions where they engage. Although these are important indicators of social well-being, other important indicators may include the positive social behaviour of others towards the resident (e.g. confirming the resident's behaviour or showing affection)., Design: A cross-sectional descriptive survey design., Method: From the perspective of human social needs, items relating to fulfillment of the needs for affection, behavioural confirmation and status were formulated and tested. This took place in three nursing homes in the Netherlands that provide somatic and psycho-geriatric care., Results: The study (sample n = 306) yielded a short and reliable scale, the Social Well-being Of Nursing home residents-scale, with separate sub-scales (three items each) for fulfillment of the three social needs., Conclusions: These first results indicate that overall social well-being and its sub-dimensions can be measured with this new observational scale, although its validity needs to be confirmed. Including the social behaviour of others towards the resident may have provided a more comprehensive measure of the social well-being of nursing home residents., Relevance to Clinical Practice: This measure may help to underscore the importance of the social behaviour of others (e.g. caregivers) for the overall social well-being of residents and with that assist care-providers in nursing homes to improve the social well-being of the residents.

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 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.

Measuring quality of life is a necessity for adequate interventions. This paper concerns the usefulness of six self-report measures for overall quality of life for nursing home residents with various levels of cognitive impairment. It was investigated which proportion of residents from four cognition groups could complete a scale, and internal consistency and construct validity of the scales were studied. Data collection took place in ten Dutch nursing homes (N = 227). The proportion of residents that could complete each scale varied. The Depression List could be administered most often to the cognitively most impaired group (43%; Mini Mental State Examination-scores 0-4). In the three cognition groups with MMSE-score >5, internal consistency of the Depression List, Geriatric Depression Scale and Negative Affect Scale was adequate in all three groups (alpha > or =.68). Intercorrelation was highest for the Philadelphia Geriatric Center Morale Scale, the Depression List, and the Geriatric Depression Scale (rho > or =.65). Nonetheless, self-report scales were not strongly correlated with two observational scales for depression, especially in cognitively severely impaired residents (rho < or =.30). In conclusion, it may not be possible to measure overall quality of life through self-report, and possibly also through observation, in many nursing home residents.

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: Although physiotherapy (PT) plays an important role in improving activities of daily living (ADL functioning) and discharge rates, it is unclear how many nursing home residents receive treatment. Furthermore, there is a lack of insight into the determinants that influence the decision for treatment. In this study, we investigated how many nursing home residents receive PT. In addition, we analysed the factors that contribute to the variation in the provision of PT both between nursing homes and between residents., Methods: A random sample of 600 elderly residents was taken from a random sample of 15 nursing homes. Residents had to be admitted for rehabilitation or for long-term care. Data were collected through interviews with the nursing home physician and the physiotherapist. Multilevel analysis was used to define the variation in the provision of PT and the factors that are associated with the question whether a resident receives PT or not. Furthermore the amount of PT provided was analysed and the factors that are associated with this., Results: On average 69% of the residents received PT. The percentage of patients receiving treatment differed significantly across nursing homes, and especially the number of physiotherapists available, explained this difference between nursing homes. Residents admitted to a somatic ward for rehabilitation, and male residents in general, were most likely to receive PT. Residents who were treated by a physiotherapist received on average 55 minutes (sd 41) treatment a week. Residents admitted for rehabilitation received more PT a week, as were residents with a status after a total hip replacement., Conclusion: PT is most likely to be provided to residents on a somatic ward, recently admitted for rehabilitation to a nursing home, which has a relatively large number of physiotherapists. This suggests a potential under-use of PT for long-term residents with cognitive problems. It is recommended that physiotherapists reconsider which residents may benefit from treatment. This may require a shift in the focus of physiotherapists from 'recovery and discharge' to 'quality of life and well-being'.

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: 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.

Background: To investigate the characteristics of patients in whom artificial nutrition and hydration (ANH) is forgone, duration of survival after the decision and factors that are associated with duration of survival., Methods: Observational study based on written questionnaires in 32 Dutch nursing homes. Of 178 nursing home patients with dementia, their treating nursing home physician (NHP) filled in a questionnaire directly after the decision was made to forgo ANH. The maximum follow-up was 6 weeks. Cox proportional hazards analysis was used to determine predictors of survival., Results: Decisions to forgo ANH in Dutch nursing homes were made most often in patients with severe dementia who also had an acute illness. More than half the patients (59%) died within 1 week after the decision. Patients with dyspnea and/or apathy were more likely to die during follow-up than patients without these symptoms. Patients who were considered more severely ill by the NHP were more likely to die than those who were considered less severely ill. The presence of restlessness indicated a higher chance of survival., Conclusions: The clinical judgment of the NHP of the severity of illness appeared to be a strong predictor of patient survival. NHPs should not rely solely on their clinical judgment concerning survival, but they should also consider the presence or absence of dyspnea, apathy and restlessness.

Purpose: Although lower respiratory tract infections are a leading cause of death in frail elderly patients, few studies have compared treatments and outcomes. We assessed the effects of different antibiotic treatment strategies on survival of elderly nursing home residents with lower respiratory tract infections in the United States and the Netherlands, where treatment approaches are quite different., Methods: We combined data from 2 prospective cohort studies of lower respiratory tract infections conducted in 36 nursing homes in the United States and 61 in the Netherlands. We included residents whose infections were treated with antibiotics: 806 in the United States and 415 in the Netherlands. Outcome measures were 1-month and 3-month mortality. We used logistic regression to adjust for differing illness severity., Results: Dutch residents had higher mortality than US residents (28.1% vs 15.1% at 1 month, respectively; P <.001). After adjusting for illness severity with logistic regression, the differences between the Dutch and US populations were not significant (odds ratio 1.34; 95% confidence interval, 0.94-1.90). Predicted mortality was overestimated for more severely ill US residents at 1 month but not at 3 months. No antibiotic regimen was consistently associated with increased or decreased mortality., Conclusion: Despite differences in illness severity and treatment, adjusted mortality did not differ between the 2 countries. Although we cannot exclude a short-term survival benefit from more aggressive treatment in the United States, differences in baseline health appear prognostically more important than the type of antibiotic treatment.

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.

Objectives: To investigate the effect of chronic diseases and disease combinations on 1-year mortality in nursing home residents., Design: Retrospective cohort study using electronically submitted Minimum Data Set (MDS) information and Missouri death certificate data., Setting: Five hundred twenty-two nursing homes in Missouri., Participants: Forty-three thousand five hundred ten nursing home residents with a full MDS assessment in 1999., Measurements: 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., Results: 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., Conclusion: 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.

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.

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.

Minimal care requirements were drafted for units for short-term palliative care for terminally ill patients in nursing homes in The Netherlands. The requirements were evaluated by (a) determining to what extent ten units were able to meet these requirements and (b) which facilitators and barriers influenced the implementation of the units. Staff members of the ten units were interviewed using a semi-structured interview protocol six months after the units were established. The results show that on average 69 percent of the requirements were met. Requirements for expertise development were best met (77 percent), and requirements for personnel and team were met least (58 percent). Facilitators for meeting the requirements included development of new housing or renovation, being part of a care provider network, and onetime subsidies. Barriers included lack of funds and shortage of staff. Further development of the requirements based on the results of this study by a committee of experts was advised.

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.

Background: Dutch nursing homes employ physicians who have completed a two year specialist training programme to become a qualified nursing home physician. This paper describes the origin of the profession of nursing home medicine in the context of Dutch nursing homes., Method: Review of the history and development of the need for specialist physicians in care of residents in nursing homes. Examination of the competencies required and training available for physicians and the benefits of this arrangement in improving quality of care., Results: Relevant skills and competencies of the specialist physician in nursing homes are discussed. The role and tasks, and the nursing home physician's method of working and providing care are explained, as well as the benefits and disadvantages of organizing medical care in this way., Conclusions: The benefits of a specialist physician are considered greater than the disadvantages. Specialist training for this role is considered to be highly desirable., (Copyright 2003 John Wiley & Sons, Ltd.)

The Discomfort Scale--Dementia of Alzheimer Type (DS-DAT) is an instrument to assess discomfort in patients with severe dementia by observing patients' behaviour during five minutes. Trained nursing home physicians collected data of 662 pneumonia patients with dementia. The data were used to test the validity of a Dutch translation of the DS-DAT as a measure of discomfort. Internal consistency of the nine-item instrument was favourable (Cronbach's alpha ranged between 0.82 and 0.84 for different times during and following the pneumonia), and factor analyses indicated measurement of a single concept. Furthermore, as hypothesised, discomfort appeared moderately associated with acute illness. Nursing home physicians' assessment of DS-DAT scores therefore appeared a suitable method to assess discomfort in severely demented psychogeriatric nursing home patients for research purposes. For use in individual patients, results are probably too strongly affected by the chosen time fluctuations of assessment. For this purpose, the current rater assessment instructions should be adapted and tested.

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. [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]

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 © 2006 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

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.

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]

Abstract: 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 &y& Elsevier]