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The article discusses a study which compares the clinical characteristics of a favorable sedation course in palliative care in the Netherlands. Details on the study design, data collection and analysis of the results are offered. It concludes that favorable sedation course is more probable when health care professionals reported shorter time to reach the required sedation depth and deeper level of sedation is obtained.

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. [ABSTRACT FROM PUBLISHER]

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. [ABSTRACT FROM AUTHOR]

Background: Patients with dementia frequently do not receive adequate palliative care which may relate to poor understanding of the natural course of dementia. We hypothesized that understanding that dementia is a progressive and terminal disease is fundamental to a focus on comfort in dementia, and examined how family and professional caregivers' understanding of the nature of the disease was associated with patients' comfort during the dying process. Methods: We enrolled 372 nursing home patients from 28 facilities in The Netherlands in a prospective observational study (2007 to 2010). We studied both the families and the physicians (73) of 161 patients. Understanding referred to families' comprehension of complications, prognosis, having been counseled on these, and perception of dementia as "a disease you can die from" (5-point agreement scale) at baseline. Physicians reported on this perception, prognosis and having counseled on this. Staff-assessed comfort with the End-of-Life in Dementia - Comfort Assessment in Dying (EOLD-CAD) scale. Associations between understanding and comfort were assessed with generalized estimating equations, structural equation modeling, and mediator analyses. Results: A family's perception of dementia as "a disease you can die from" predicted higher patient comfort during the dying process (adjusted coefficient -0.8, 95% confidence interval (CI): -1.5; -0.06 point increment disagreement). Family and physician combined perceptions (-0.9, CI: -1.5; -0.2; 9-point scale) were also predictive, including in less advanced dementia. Forty-three percent of the families perceived dementia as a disease you can die from (agreed completely, partly); 94% of physicians did. The association between combined perception and higher comfort was mediated by the families' reporting of a good relationship with the patient and physicians' perception that good care was provided in the last week. Conclusions: Awareness of the terminal nature of dementia may improve patient comfort at the end of life. Educating families on the nature of dementia may be an important part of advance care planning. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

The article discusses a study reviewing the literature on palliative care research in long-term care facilities, such as nursing homes (NH), in Europe, using PubMed, Embase and PsychINFO databases. Few studies reporting on patient outcome data using different measurement instruments were published in ten years. Majority showed symptoms, especially pain, the most frequent measured out-come. The authors suggest more multidimensional research, high quality trails and intervention studies.

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 [ABSTRACT FROM AUTHOR]

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 [ABSTRACT FROM AUTHOR]

Although spiritual caregiving is a key domain of palliative care, it lacks a clear definition, which impedes both caregiving and research in this domain. The aim of this study was to conceptualize spirituality by identifying dimensions, based on instruments measuring spirituality in end-of-life populations. A systematic literature review was conducted. Literature published between 1980 and 2009, focussing on instruments measuring spirituality at the end of life was collected from the PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and PsycINFO databases. Inclusion criteria were: (1) the studies provide empirical data collected with an instrument measuring spirituality or aspects of spirituality at the end of life; (2) the data report on a (subgroup) of an end-of-life population, and (3) the instrument is available in the public domain. Content validity was assessed according to a consensus-based method. From the items of the instruments, three investigators independently derived dimensions of spirituality at the end of life. In 36 articles that met the inclusion criteria we identified 24 instruments. Nine instruments with adequate content validity were used to identify dimensions of spirituality. To adequately represent the items of the instruments and to describe the relationships between the dimensions, a model defining spirituality was constructed. The model distinguishes the dimensions of Spiritual Well-being (e.g., peace), Spiritual Cognitive Behavioral Context (Spiritual Beliefs, Spiritual Activities, and Spiritual Relationships), and Spiritual Coping, and also indicates relationships between the dimensions. This model may help researchers to plan studies and to choose appropriate outcomes, and assist caregivers in planning spiritual care. [ABSTRACT FROM AUTHOR]

Objective: To study the effects of introducing a nursing guideline on depression in residents with dementia of psychogeriatric nursing home wards. Methods: A multi-center controlled clinical trial with randomization at ward level was used to study the effects of the guideline introduction. Nursing teams were trained in applying the guideline to their own residents diagnosed with depression in dementia. Key elements of the nursing guideline are increasing individualized pleasant activities and decreasing unpleasant events. Participating residents were 97 residents diagnosed with dementia and comorbid depression, from 18 psychogeriatric nursing home wards, in nine Dutch nursing homes. Measurements took place at pre-test, post-test and follow-up. Primary outcome was severity of depression measured with the MDS/RAI-Depression Rating Scale(DRS) and the Cornell Scale for Depression in Dementia. Secondary outcome is mood as measured by the FACE-observation scale. Results: Compliance with the nursing guideline was moderate. Despite this, residents on the experimental wards showed a significant reduction in depression on the DRS. With the Cornell scale a reduction of depression was found as well, although not significantly different from that in the control group. No effects on observed mood were found. Conclusion: This study shows significant reductions in depression severity by introducing a nursing guideline on psychogeriatric nursing home wards. Better compliance with the guideline could probably enlarge the effects. Some ways to achieve enhanced compliance are: (1) additionally train non-certified nurse assistants, and (2) emphasize necessary conditions for successful introduction of the guideline to nursing team managers. [ABSTRACT FROM AUTHOR]

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]

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. [ABSTRACT FROM PUBLISHER]

The article discusses research assessing the preferences of dementia patients regarding end-of-life care in relation to the "Preferences About Death and Dying" (PADD) instrument for palliative care. The researchers note that respecting the wishes of dementia patients regarding end-of-life care is consistent with patient- and family-centered palliative care. Statistics related to the preferences of dementia patients with regard to death and dying, as perceived by their family, are presented.

Background: The behaviour of individuals is affected by the social networks in which they are embedded. Networks are also important for the diffusion of information and the influence of employees in organisations. Yet, at the moment little is known about the social networks of nursing staff in healthcare settings. This is the first study that investigates informal communication and advice networks of nursing staff in long-term care. We examine the structure of the networks, how they are related to the size of units and characteristics of nursing staff, and their relationship with job satisfaction. Methods: We collected social network data of 380 nursing staff of 35 units in group projects and psychogeriatric units in nursing homes and residential homes in the Netherlands. Communication and advice networks were analyzed in a social network application (UCINET), focusing on the number of contacts (density) between nursing staff on the units. We then studied the correlation between the density of networks, size of the units and characteristics of nursing staff. We used multilevel analyses to investigate the relationship between social networks and job satisfaction of nursing staff, taking characteristics of units and nursing staff into account. Results: Both communication and advice networks were negatively related to the number of residents and the number of nursing staff of the units. Communication and advice networks were more dense when more staff worked part-time. Furthermore, density of communication networks was positively related to the age of nursing staff of the units. Multilevel analyses showed that job satisfaction differed significantly between individual staff members and units and was influenced by the number of nursing staff of the units. However, this relationship disappeared when density of communication networks was added to the model. Conclusions: Overall, communication and advice networks of nursing staff in long-term care are relatively dense. This fits with the high level of cooperation that is needed to provide good care to residents. Social networks are more dense in small units and are also shaped by characteristics of staff members. The results furthermore show that communication networks are important for staff's job satisfaction. [ABSTRACT FROM AUTHOR]

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 fulfilment 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 fulfilment 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. [ABSTRACT FROM AUTHOR]

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. [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]

Dementia patients frequently die after a pneumonia or prolonged intake problems. Maintaining comfort is a goal of palliative care in end-stage dementia. To compare discomfort in dementia patients dying after a pneumonia with patients dying after intake problems, and to assess associations with treatment, we combined 2 Dutch prospective studies. We selected 559 pneumonia patients and 166 patients with intake problems who had no pneumonia. Discomfort was observed with the Discomfort Scale - Dementia of Alzheimer Type (DS-DAT). Linear regression was performed with the dependent DS-DAT levels shortly before death in 314 patients who died within 2 weeks. Compared with discomfort in patients with intake problems, unadjusted and adjusted discomfort in patients with pneumonia was higher both at t 0 and before death. In adjusted analyses, antibiotic treatment (mostly oral) was associated with less discomfort before death (beta -1.1, CI -2.2 - -0.03), while invasive rehydration (received by only 8 patients) was associated with more discomfort (beta 3.5, CI 0.6 - 6.3). Death from pneumonia may cause great suffering in dementia patients. If confirmed in a study with different case mix and treatments, antibiotics may be used to decrease discomfort even when death is imminent. [ABSTRACT FROM AUTHOR]

Background: The objective of this article is to describe the design of a study to evaluate the clinical and economic effects of a Disease Management model on functional health, quality of care and quality of life of persons living in homes for the elderly. Methods: This study concerns a cluster randomized controlled clinical trial among five intervention homes and five usual care homes in the North-West of the Netherlands with a total of over 500 residents. All persons who are not terminally ill, are able to be interviewed and sign informed consent are included. For cognitively impaired persons family proxies will be approached to provide outcome information. The Disease Management Model consists of several elements: (1) Trained staff carries out a multidimensional assessment of the patients functional health and care needs with the interRAI Long Term Care Facilities instrument (LTCF). Computerization of the LTCF produces immediate identification of problem areas and thereby guides individualized care planning. (2) The assessment outcomes are discussed in a Multidisciplinary Meeting (MM) with the nurse, primary care physician, nursing home physician and Psychotherapist and if necessary other members of the care team. The MM presents individualized care plans to manage or treat modifiable disabilities and risk factors. (3) Consultation by an nursing home physician and psychotherapist is offered to the frailest residents at risk for nursing home admission (according to the interRAI LTCF). Outcome measures are Quality of Care indicators (LTCF based), Quality Adjusted Life Years (Euroqol), Functional health (SF12, COOP-WONCA), Disability (GARS), Patients care satisfaction (QUOTE), hospital and nursing home days and mortality, health care utilization and costs. Discussion: This design is unique because no earlier studies were performed to evaluate the effects and costs of this Disease Management Model for disabled persons in homes for the elderly on functional health and quality of care. Trail registration number: ISRCTN11076857 [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]

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. [ABSTRACT FROM AUTHOR]

Objective To develop a Quality of Life questionnaire rated by professionals that can be used for people with dementia in different stages of the disease, living in residential settings. Method Development was performed in two phases: item generation and pilot testing, and a field survey to evaluate the psychometric properties. For unidimensionality we used a non-parametric model from item response theory: the Mokken scaling model, and computed the corresponding scalability coefficients, using a theory driven strategy. Results The pilot survey resulted in a list of 49 items. The field survey was performed in a sample of 238 people with dementia residing in ten nursing homes. The scalability of the subscales positive affect, negative affect, restless tense behavior, and social relations is strong (0.50 < H < 0.63); for care relationship, positive self image, feeling at home, and having something to do, scalability was moderate (0.40 < H < 0.49), and for social isolation it was weak (H = 0.34). The reliability coefficient Rho (under assumption of double monotonicity) varied from 0.60 for social isolation to 0.90 for positive affect (Cronbach's alpha varied from 0.59 to 0.89). Twenty-one of 40 items are suited for people with very severe dementia. Conclusion The QUALIDEM is an easy to administer and sufficiently reliable rating scale that provides a QOL profile of persons with dementia in residential settings. The QUALIDEM can be used for evaluation as well as for research and practice innovation. Copyright © 2006 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Objective To validate the QUALIDEM, a quality of life measure for people with dementia within residential settings rated by professional caregivers. Method In a sample of 202 residents of nursing homes Spearman rank correlations were calculated between the QUALIDEM subscales aand indices of convergent validity and discriminant validity, with dementia severity and need of care, with global QOL scores by the head nurse and family, and with self-report on COOP/WONCA Charts. Results The one-method multi-trait matrix showed 90.5% of the correlations to be in support for convergent and discriminant validity. Low to moderate correlations were observed with dementia severity and need of care, confirming that QOL is not merely disease severity. Support for concurrent validity was found in correlations with QOL ratings by the head nurse. The QUALIDEM did not correlate with most of the family ratings or with the COOP/WONCA Charts. Conclusion The results of this validation study together with the obtained content validity through the method of construction provide sufficient support for validity of the QUALIDEM to be used for care evaluation and research in residential settings. Copyright © 2006 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

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 l-year study period, mostly by hypodermodysis. 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, ANN 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. [ABSTRACT FROM AUTHOR]

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'. [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]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

The article relates the study on the characteristics of Dutch nursing home patients with severe dementia in whom artificial nutrition and hydration is forgone. It was found out that patients with dyspnea and/or apathy were more likely to die during follow-up than patients without these symptoms. It was concluded that clinical judgment of the nursing home physician of the severity of illness seemed to be a strong predictor of patient survival.

The article explores factors influencing Dutch and American physician treatment decisions when using nursing home patients with dementia become acutely ill with pneumonia. Data from 12 physicians from Netherlands and 12 physicians in North Carolina who care for nursing home patients were collected. Findings revealed that Dutch physicians assumed active, primary responsibility for treatment decisions compared to American physicians who are more passive and deferential to family preferences.

Aim. This paper reports an investigation of the effects of the implementation of snoezelen, or multisensory stimulation, on the quality of nursing assistants’ behaviour during morning care. Background. Nursing assistants in long-term dementia care are often unaware of the impact of their behaviour on patient functioning. Snoezelen is a psychosocial intervention that might improve the quality of caregiver behaviour by combining a person-centred approach with the integration of sensory stimuli. Methods. A quasi-experimental pre- and post-test design was implemented in 12 wards for older mentally infirm patients at six nursing homes. The experimental group intervention was a 4-day in-house ‘snoezelen’ training, stimulus preference screening and supervision meetings. The control group received usual nursing home care. The effectiveness of the intervention was studied by analysing 250 video recordings, which were assessed by independent observers using a 4-point measurement scale developed for this study and based on Kitwood's Dialectical Framework. Results. The results showed a statistically significant increase in ‘Positive Person Work’ and decrease in ‘Malignant Social Psychology’ (total scores) after the implementation of snoezelen. Nursing assistants in the experimental group also improved by statistically significant amounts on all subitems of ‘Positive Person Work’. The mean number of sensory stimuli, offered explicitly, increased. Conclusion. The implementation of snoezelen succeeded in effecting a change to a more person-centred approach during morning care. The results indicate that nursing assistants’ behaviour can be positively changed provided that the new care model has been successfully implemented. [ABSTRACT FROM AUTHOR]

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]

This pilot study was carried out to determine to what extent patients admitted to palliative care units (PCUs) in The Netherlands maintained good levels of individual quality of life (QoL), and to what extent response shift – a measure of adaptation – influenced QoL at the end of life. Two components of response shift were measured: reconceptualization (exchanging important areas of life) and value change (changing the perceived importance of important areas of life). Twenty patients admitted to PCUs were interviewed at one week, three weeks, and five weeks after admission. Results show that individual QoL was high and remained stable over the three measurement points. The individual QoL of patients who did not reconceptualize or did not change values was higher than the individual QoL of patients who did. The current pilot data need to be corroborated with data from additional respondents. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Dementia among nursing home residents is often accompanied by high care dependency and behavioral disturbances, resulting in an increased workload for the caregivers. Snoezelen, integrated into 24-hour dementia care, is an approach that might improve the quality of working life of dementia caregivers. This study aims to investigate the effectiveness of integrated snoezelen on work-related outcomes (workload and psychological outcomes) of caregivers in psychogeriatric nursing homes.Methods: A quasi-experimental pre- and post-test design was used, comparing six psychogeriatric wards that implemented snoezelen in 24-hour care to six control wards that continued giving usual care. One hundred and twenty-nine Certified Nursing Assistants (CNAs) were included in the pre-test and 127 CNAs in the post-test. The six intervention wards received a 4-day in-house training program. The intervention further consisted of implementation activities on the ward (e.g. stimulus preference screening, workgroup), three in-house follow-up meetings and two general meetings. Measurements on workload, perceived problems, stress reactions, job satisfaction and burnout were performed at baseline and after 18 months.Results: A significant treatment effect in favor of the experimental group was found for time pressure, perceived problems, stress reactions and emotional exhaustion. CNAs of the experimental group also improved on their overall job satisfaction score. In particular, they were more satisfied with the quality of care and with their contact with residents.Conclusion: The implementation of snoezelen improved the quality of the working life of dementia caregivers. [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.

Provides information on the concept of quality of life in dementia in the different stages of the disease. Determination of the multidimensional evaluation of the person-environment system of the individual; Terms of the perceived consequences of the dementia; Incidence of chronic diseases; Designation of life satisfaction as the outcome of interest of the major theories of successful aging.

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]

The aim of this study was to assess the Palliative care Outcome Scale (POS) for terminally ill nursing home (NH) patients in the Netherlands. Methods: A prospective observational study of patients with a life-expectancy of six weeks or less in 16 Dutch NHs. NH staff rated the patient characteristics and measured palliative care with the POS, including items on physical, psychosocial, informational, spiritual and practical aspects. Results: POS nonscores (not applicable; unknown) were mainly found in the psychosocial and spiritual domains, particularly in patients with dementia. Mean scores for non-demented patients and patients with dementia were favourable for the majority of the POS items. Conclusion: According to the NH staff, fairly good quality care was provided, but the psychosocial and spiritual aspects of care need to be addressed more in the last days of the dying NH patient's life. The results indicate that the POS is an appropriate instrument to assess not only cancer patients, but also non-cancer and (moderately) severely demented patients. [ABSTRACT FROM AUTHOR]

To investigate the effect of chronic diseases and disease combinations on 1-year mortality in nursing home residents.Retrospective cohort study using electronically submitted Minimum Data Set (MDS) information and Missouri death certificate data.Five hundred twenty-two nursing homes in Missouri.Forty-three thousand five hundred ten nursing home residents with a full MDS assessment in 1999.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.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.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. [ABSTRACT FROM AUTHOR]

Objective: To provide an overview of QOL measures applicable for research in dementia, the scale content, method of data collection, and their psychometric properties.Method: Literature research.Results: Six dementia-specific QOL measures were identified, eight generic measures were used in a demented population, and three dementia-specific measures related to QOL are described as well. Measures vary considerably in scale content, and method of data collection. Reliability indexes were always available, support of instrument validity was often reported, but reports of responsiveness to change were found only for two dementia-specific QOL measures.Conclusion: When the interest is primarily on people with dementia, a dementia-specific instrument is to be preferred. Further clarification of the concept of QOL and particularly its relation to disease severity is required. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]