Social well-being and its measurement in the nursing home, the SWON-scale.

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.

A revised Index for Social Engagement for long-term care.

The objective of this study was to improve validity and reliability estimates of the Index for Social Engagement (ISE) for long-term care. After exploring content validity and internal consistency in Dutch and Canadian data, two ISE items were dropped, and two new items were added. Reliability of this Revised ISE (RISE) was tested in 189 nursing home residents. It appeared that the RISE has enhanced reliability estimates, especially in residents with cognitive impairment. The RISE for long-term care improves the existing index by including additional dimensions of social engagement and by increasing the reliability of results for residents with cognitive impairment.

Predictors of mortality for lower respiratory infections in nursing home residents with dementia were validated transnationally.

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.

Predicted survival vs. actual survival in terminally ill noncancer patients in Dutch nursing homes.

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.

Discomfort in nursing home patients with severe dementia in whom artificial nutrition and hydration is forgone.

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.

Symptoms, signs, problems, and diseases of terminally ill nursing home patients: a nationwide observational study in the Netherlands.

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.

Comorbidity and 1-year mortality risks in nursing home residents.

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.

Antibiotic treatment and survival of nursing home patients with lower respiratory tract infection: a cross-national analysis.

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.

Withholding or starting antibiotic treatment in patients with dementia and pneumonia: prediction of mortality with physicians' judgment of illness severity and with specific prognostic models.

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

Withholding antibiotic treatment in pneumonia patients with dementia: a quantitative observational study.

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

Pneumonia: the demented patient's best friend? Discomfort after starting or withholding antibiotic treatment.

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

Treatment of nursing home residents with dementia and lower respiratory tract infection in the United States and The Netherlands: an ocean apart.

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.

Severe dementia and adverse outcomes of nursing home-acquired pneumonia: evidence for mediation by functional and pathophysiological decline.

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

Palliative care units in The Netherlands: changes in patients' functional status and symptoms.

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.

Lower respiratory infections in nursing home residents with dementia: a tale of two countries.

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.

Pain assessment in patients with possible vascular dementia.

PREVIOUS studies comparing Alzheimer's disease (AD) patients with the normal elderly suggest that AD patients experience less pain. In the present study, pain reporting in 20 patients with possible vascular dementia (VaD) was compared to 20 nondemented elderly who had comparable pain conditions. It was hypothesized that, due to de-afferentiation, the possible VaD patients would experience more pain than the cognitively intact elderly. Pain assessment was conducted using three visual analogue scales, (1) the Coloured Analogue Scale (CAS) for Pain Intensity, (2) the CAS for Pain Affect, and (3) the Faces Pain Scale (FPS); a verbal pain questionnaire, Number of Words Chosen--Affective (NWC-A) of the McGill Pain Questionnaire; and an observation scale, the Checklist of Nonverbal Pain Indicators (CNPI). Results showed a significant increase in the scores on the CAS for Pain Affect and the FPS in the demented patients compared to the control group. There was a tendency for an increase in scores on the CNPI in the VaD group. These results suggest that patients with possible VaD suffer more pain than healthy elderly without cognitive impairment.

[Measuring discomfort in patients with dementia. Validity of a Dutch version of the Discomfort Scale--dementia of Alzheimer type (DS-DAT)]. / Het meten van (on)welbevinden bij demente patiënten. Validiteit van de Nederlandse versie van de Discomfort Scale--dementia of Alzheimer type (DS-DAT).

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.

[Facilitators and barriers in implementing units for short term terminal care in nursing homes]. / Bevorderende en belemmerende factoren bij de implementatie van units voor kortdurende terminale zorg in verpleeghuizen.

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.

[Retrospective assessment of the Dutch version of the Discomfort Scale--Dementia of Alzheimer Type (DS-DAT): is estimation sufficiently valid and reliable?]. / Retrospectieve afname van de Nederlandse versie van de Discomfort Scale--Dementia of Alzheimer type (DS-DAT): is inschatten achteraf voldoende valide en betrouwbaar?

The Discomfort Scale--Dementia of Alzheimer Type (DS-DAT) measures discomfort in severely demented patients with scores on nine items with behavioral descriptors. Direct observation of behaviour is the preferred method in severely demented patients, but is not feasible for some types of research. Alternatively, a patient's score may be assessed 'retrospectively', scoring an overall picture of the patient. To assess validity and reliability of such retrospective assessments, five observers--three nursing home physicians and two paramedicals--gave a DS-DAT score for 77 nursing home patients by direct observation, and, two weeks later, retrospectively. The mean score of the five observers was not different. The Intra-class Correlation Coefficient for intra-observer reliability was 0.50 for the five observers, and 0.55 for the three nursing home physicians. Our study demonstrated the possibility of a reasonably valid, but moderately reliable retrospective assessment of the Dutch version of the DS-DAT. Appropriate training of nursing home physicians who know their patients well may be required for this.

High prevalence of vitamin D deficiency and insufficiency in patients with manifest Huntington disease: An explorative study.

Vitamin D deficiency and insufficiency are common in older institutionalized people and known to be associated with muscle weakness, impaired balance and increased fall risk. Falls and balance problems are common in people with Huntington disease (HD). Despite this, the prevalence of vitamin D deficiency in patients with manifest HD has never been investigated. Serum 25(OH)D levels were measured in routinely drawn blood samples from 28 Dutch institutionalized patients with manifest Huntington disease. Mean serum 25(OH)D level was 33 nmol/l (SD 15). Twenty-five subjects (89%) were vitamin D deficient or insufficient (25(OH)D < 50 nmol/L). A positive association was found between serum 25(OH)D levels and Functional Ambulation Classification (FAC) scores (p = 0.023).