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).

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.

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.

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 ≥.68). Intercorrelation was highest for the Philadelphia Geriatric Center Morale Scale, the Depression List, and the Geriatric Depression Scale (rho ≥.65). Nonetheless, self-report scales were not strongly correlated with two observational scales for depression, especially in cognitively severely impaired residents (rho ≤.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.

BACKGROUND AND AIMS:In many patients with dementia, the oral intake of fluids and nutrients becomes insufficient and a decision has to be made whether to start artificial nutrition or hydration (ANH). This study examines the incidence of ANH in nursing-home patients with dementia in The Netherlands, the methods of administration used, patient characteristics, and the characteristics of the ANH decision- making process.METHODS:In June 2001, a postal questionnaire was sent to all nursing-home physicians (NHPs) (n=1054) in The Netherlands. The response rate was 77%.RESULTS:Of the NHPs, 39% had started ANH during the 1-year study period, mostly by hypodermoclysis. As calculated from the total number of patients in The Netherlands, the incidence density for ANH in demented nursing-home patients was 3.4 per 100 patient-years. The most important considerations in taking this decision were the patient's physical condition, the expected result of rehydration, and the (presumed) wishes of the patient. Decisions to start hydration resembled decisions to start nutrition, but more frequently concerned incompetent patients with an intercurrent infectious disease.CONCLUSIONS:Compared with the USA literature, ANH is practised less in The Netherlands. This practice conforms to the prevailing treatment policy endorsed by the Dutch Association of Nursing-Home Physicians. In starting nutrition and/or hydration, an agreement about the (limited) duration of ANH is generally made, and the NHPs generally involve relatives and nurses in the decision-making process. Almost always, all parties involved agreed with decisions taken.

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.

Objectives: To determine the prevalence of incontinence (urinary [UI], fecal [FI], and dual incontinence [DI]) among newly admitted residents in Dutch nursing homes and to explore the relationship between incontinence, and gender, type of care (psychogeriatric, somatic) and need for assistance with toileting.

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. Fora 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.

Epidemiological studies show that, worldwide, the number of people aged over 65 will increase substantially in the next decades and that a considerable proportion of this population will develop dementia.1 Ample evidence shows that ageing is associated with a high rate of painful conditions, irrespective of cognitive status.2 The number of patients with dementia who will experience painful conditions is therefore likely to increase. A key question relates to whether and how patients with dementia perceive pain. Patients with dementia may express their pain in ways that are quite different from those of elderly people without dementia.3 Particularly in the more severe stages of dementia, therefore, the complexity and consequent (frequent) inadequacy of pain assessment leads to the undertreatment of pain. The most commonly used pain assessment instruments seem to be selected primarily according to the communicative capacity of the patient (self report pain rating scales for communicative patients and observation scales for non-communicative patients) instead of according to two main aspects of pain—the sensory-discriminative and motivational-affective aspects. In particular, the motivational-affective aspects of pain are assessed by observation scales, which should therefore be applied to every patient, irrespective of ability to communicate. Distinction between the sensory-discriminative and motivational-affective aspects of pain is of great clinical relevance, as the motivational-affective aspects are particularly likely to reflect pain that needs treatment.4 Moreover, differentiating between these two aspects of pain in relation to the neuropathology of the various subtypes of dementia provides insight into the basis of the alterations in the pain experiences of elderly people with dementia. Future experimental and clinical studies should not only focus on subtypes of dementia but should go a step further and assess pain in disorders in which pain is already present at a stage without cognitive impairment and during the course …

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.

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.

In order to conceptually define quality of life (QOL) in dementia, the literature on QOL in the elderly population, in chronic disease and in dementia was studied. Dementia is a progressive, age-related, chronic condition and to avoid omissions within the dementia-specific concept of QOL, a broad orientation was the preferred approach in this literature study. Adaptation is a major outcome in studies investigating interventions aimed at improving QOL in chronic conditions, but to date, it has not been used in the definition of QOL. It is argued that adaptation is an important indication of QOL in people with chronic diseases and therefore also in dementia. Some crucial issues in assessing dementia-related QOL that are relevant to clarify the continuing debate on whether QOL, particularly in dementia, can be measured at all, are discussed. Then the following conceptual definition is offered: dementia-specific QOL is the multidimensional evaluation of the person-environment system of the individual, in terms of adaptation to the perceived consequences of the dementia.

Objectives To examine the effect of integrated emotion-oriented care on nursing home residents with dementia and nursing assistants.Design A multi-site randomized clinical trial with matched groups, and measurements at baseline and after seven months.Setting Sixteen psychogeriatric wards in fourteen nursing homes in the Netherlands.Participants One hundred and forty-six elderly residents with the diagnosis dementia of the Alzheimer (DAT) type, mixed DAT and vascular dementia, and dementia syndrome (NAO) and 99 nursing assistants.Interventions Integrated emotion-oriented care and usual care.Measurements Demented elderly: Behaviour and mood related to adaptation to the illness and the institutionalization. Nursing assistants: General health as measured by feelings of stress, stress reactions, feeling of competence and illness.Results Positive effects in favour of the integrated emotion-oriented care were found in mild to moderately demented residents on two adaptive tasks: maintaining an emotional balance (less anxiety) and preserving a positive self-image (less dissatisfaction). In the trained group of nursing assistants fewer stress reactions were found only in those who perceived improvement in their emotion-oriented care skills after training.Conclusion Emotion-oriented care is more effective with regard to the emotional adaptation in nursing homes of persons with a mild to moderate dementia. For the severely demented elderly we did not find this surplus value. This outcome is of clinical importance for elderly persons with dementia who are cared for in nursing homes. With respect to the nursing assistants it is concluded that emotion-oriented care has a positive influence on stress reactions in some of them. Copyright (c) 2005 John Wiley & Sons, Ltd.

This cross-sectional study investigated the relationship between apathy and quality of life (QOL) in nursing home residents (n = 227). In all, 92 residents could be assessed with the Mini Mental State Examination (MMSE), the Geriatric Depression Scale (GDS) and the Philadelphia Geriatric Centre Morale Scale (PGCMS), and were able to answer a question about overall subjective QOL. Apathetic behaviour and consciousness disorders were measured with the Behaviour Rating Scale for Psychogeriatric Inpatients (GIP). Linear regression analysis was first applied to study the association of cognition, depression and consciousness with apathy. It was then used to study the relationship between apathy and QOL, controlling for the constructs that were associated with apathy. The relationship between apathy and QOL appeared to vary with the cognitive functioning of the residents: In residents with a low level of cognitive functioning, apathetic behaviour was associated with high QOL; in residents with a higher level of cognitive functioning, apathetic behaviour was associated with low QOL. The necessity and nature of interventions aimed at stimulating apathetic residents may depend on the level of cognitive functioning of the residents. Further research is needed to determine if and when apathy interventions are appropriate.

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.