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Background: The European population is rapidly ageing, resulting in increasing numbers of older people dying in long-term care facilities. There is an urgent need for palliative care in long-term care facilities., Aim: The aim of this study was to systematically review the literature on palliative care research in long-term care facilities in Europe with respect to how the palliative care populations were described, and to determine the study designs and patient outcome measures utilized., Methods: We used a systematic literature review. The search strategy included searches of PubMed, Embase and PsychINFO databases from 2000 up to May 2010, using search terms related to 'palliative care' and 'end-of-life care' combined with search terms related to 'long-term care'. We selected articles that reported studies on patient outcome data of palliative care populations residing in a long-term care facility in Europe., Results: This review demonstrated that there are few, and mainly descriptive, European studies on palliative care research in long-term care facilities. Fourteen studies were retained in the review, of which eight were conducted in the Netherlands. None of these studies described their study population specifically as a palliative care or end-of-life care population. Retrospective and prospective designs were applied using many different measurement instruments. Most instruments were proxy ratings. Symptom (management) was the most frequently measured outcome., Conclusion: To improve future research on palliative care in long-term care facilities, agreement on what can be considered as palliative care in long-term care facilities and, the availability of well-developed and tested measurement instruments is needed to provide more evidence, and to make future research more comparable.

Purpose: Quality of care for long-term care (LTC) residents with dementia at the end-of-life is often evaluated using standardized instruments that were not developed for or thoroughly tested in this population. Given the importance of using appropriate instruments to evaluate the quality of care (QOC) and quality of dying (QOD) in LTC, we compared the validity and reliability of ten available instruments commonly used for these purposes., Methods: We performed prospective observations and retrospective interviews and surveys of family (n = 70) and professionals (n = 103) of LTC decedents with dementia in the Netherlands., Results: Instruments within the constructs QOC and QOD were highly correlated, and showed moderate to high correlation with overall assessments of QOC and QOD. Prospective and retrospective ratings using the same instruments differed little. Concordance between family and professional scores was low. Cronbach's alpha was mostly adequate. The EOLD-CAD showed good fit with pre-assumed factor structures. The EOLD-SWC and FPCS appear most valid and reliable for measuring QOC, and the EOLD-CAD and MSSE for measuring QOD. The POS performed worst in this population., Conclusions: Our comparative study of psychometric properties of instruments allows for informed selection of QOC and QOD measures for LTC residents with dementia.

Objective: In some nursing home populations, antibiotic treatment may not reduce mortality following lower respiratory infection (LRI). To better inform treatment decisions, we determined influences on mortality following LRI among antibiotic-treated and non-antibiotic-treated residents in 2 populations., Design: Observational, prospective, cohort studies., Setting: Ninety-seven nursing homes (36 US, 61 Netherlands)., Participants: Residents (1044 US, 513 Netherlands) who met a standardized study definition for LRI., Measurements: Demographics, symptoms and physical findings of LRI, functional status, major illness diagnoses, dementia status, treatments, and date of death within 6 months after diagnosis., Methods: We estimated a 2-period (0-14/15-90 days) weighted proportional hazards model of mortality for antibiotic-treated (n = 1280) and non-antibiotic-treated (n = 277) residents; both weights and regressors provide "doubly robust" risk adjustment-for LRI (illness) severity using a prognostic score and for nonrandom receipt of antibiotic treatment using a propensity score., Results: In both the United States and the Netherlands, 14-day mortality was associated with three factors-LRI severity, water intake at diagnosis, and antibiotic use (not directly by severe dementia)-that accounted for 82% or, sequentially, 39%, 42%, and 1% of the cross-national mortality difference. The LRI Severity Score (based only on at-diagnosis eating dependency, pulse rate, decreased alertness, and breathing difficulty, with adequate discrimination [c ≥ 0.74] and calibration, and cross-indexed to commonly used LRI mortality measures) was related to mortality through 90 days, regardless of treatment. With sufficient water intake at diagnosis, 14-day mortality was unrelated to not receiving antibiotic treatment (adjusted hazard ratio [AHR], 1.20; 95% confidence interval, 0.70-2.04); insufficient water intake was related to increased 14-day mortality with antibiotics (AHR, 1.90; 1.38-2.60) or without (AHR, 7.12; 4.83-10.5). After 14 days, relative mortality worsened for antibiotic-treated residents with insufficient water intake. Inadequate water intake was related to increased eating dependence at onset of the LRI (OR, 4.2; 3.0-5.8)., Conclusion: LRI severity, water intake, and antibiotic use explain mortality in both studies and reconcile cross-study Dutch/US 14-day mortality differences. LRI severity, derived at 14 days, is related to mortality through 90 days, regardless of treatment, and is key to risk adjustment. With adequate hydration, the survival benefit from antibiotic use is nonsignificant. Conversely, hydration, even without antibiotic treatment, appears central to curative treatment. In LRI guidelines, treatment, and research, the relative benefits of antibiotics and hydration for curative treatment should be addressed., (Copyright © 2012 American Medical Directors Association, Inc. Published by Elsevier Inc. All rights reserved.)

Objective: To test the effectiveness of an integrative psychotherapeutic nursing home program (integrative reactivation and rehabilitation [IRR]) to reduce multiple neuropsychiatry symptoms (MNPS) of cognitively impaired patients and caregiver burden (CB)., Design: Randomized controlled trial., Setting: Psychiatric-skilled nursing home (IRR) and usual care (UC), consisting of different types of nursing home care at home or in an institution., Participants: N = 168 (81 IRR and 87 UC). Patients had to meet classification of the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition for dementia, amnestic disorders, or other cognitive disorders. Further inclusion criteria: Neuropsychiatric Inventory (NPI) ≥3; Mini-Mental State Examination ≥18 and ≤27; and Barthel Index (BI) ≥5 and ≤19., Intervention: IRR consisted of a person-oriented integrative psychotherapeutic nursing home program to reduce MNPS of the patient and CB. UC consisted of different types of nursing home care at home or in an institution, mostly emotion oriented., Measurements: Primary outcome variable was MNPS (number and sum-severity of NPI). Furthermore, burden and competence of caregiver were also measured., Assessments: T1 (inclusion), T2 (end of treatment), T3 (after 6 months of follow-up). Cohen's d (Cd) was calculated for mean differences (intention to treat). For confounding, repeated measurement modeling (random regression modeling [RRM]) was applied., Results: In the short term from the perspective of the caregiver, IRR showed up to 34% surplus effects on MNPS of the patients; NPI symptoms: 1.31 lower (Cd, -0.53); and NPI sum- severity: 11.16 lower (Cd, -0.53). In follow-up, the effects were sustained. However, from the perspective of the nursing team, these effects were insignificant, although the trend was in the same direction and correlated significantly with the caregiver results over time (at T3: r = 0.48). In addition, IRR showed surplus effects (up to 36%) on burden and competence of caregiver: NPI emotional distress: 3.78 (Cd, -0.44); CB: 17.69 (Cd, -0.63) lower; and Competence: 6.26 (Cd, 0.61) higher. In follow-up, the effects increased up to 50%. RRM demonstrated that the effects were stable., Conclusion: From the perspective of the caregiver, IRR was significantly more effective than UC to reduce MNPS in cognitively impaired patients and CB. In follow-up, the effect on CB even increased. However, from the perspective of the nursing team, the effects on MNPS were statistically insignificant. Nevertheless, the trend was in the same direction and correlated significantly with the caregiver results over time. Further research is needed, preferably using a blinded randomized controlled trial.

Objective: To evaluate the practice of continuous palliative sedation after the introduction of a national guideline., Design: Investigation by questionnaire., Method: In 2008, 1580 physicians were asked to fill out a questionnaire regarding the last patient for whom they had prescribed continuous sedation until death., Results: The response was 38% (n = 606). Eighty-two percent of the respondents were aware of the national guideline. Dyspnoea, pain and physical exhaustion were most often mentioned as the decisive indications for continuous sedation. The decision to use sedation was discussed with all mentally competent patients; in 18% of these cases, the patients had only been informed of the decision. Life expectancy at the start of continuous sedation was estimated to be less than 2 weeks in 97% of the cases. In 14% of the cases, the physicians felt pressured to start the sedation, predominantly by patients and relatives. Physicians were present at the start of sedation in 81% of the cases. Midazolam was used to induce sedation in 92%, and 41% of the physicians estimated that continuous sedation had hastened death to some extent. Most physicians believed that their patients' symptoms had been adequately relieved by continuous sedation, that the relatives were satisfied and that the quality of dying had been good., Conclusion: Continuous sedation practice in the Netherlands largely reflects the recommendations of the national guideline. Issues needing further attention are the pressure felt by physicians to start continuous sedation, as well as the possible life-shortening effect of continuous sedation as perceived by some of the physicians.

Objective: To provide insight into the prevalence and clinically relevant symptoms of comorbid depression among dementia patients in psychogeriatric nursing home wards, to enhance depression recognition., Design: Cross-sectional analyses of multicenter diagnostic data., Setting: Psychogeriatric wards of Dutch nursing homes., Participants: Five hundred and eighteen residents with dementia., Measurements: 1) Diagnosis of depression in dementia (Provisional Diagnostic Criteria for Depression of Alzheimer disease [PDC-dAD]), 2) dementia (Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition-PC), and 3) stage of dementia (Geriatric Depression Scale)., Results: The point prevalence of comorbid depression in dementia (Stages 2-6) on psychogeriatric nursing home wards was 19%. "Depressed mood," "irritability," and "fatigue" were the most prevalent depressive symptoms. Residents taking antidepressants at the time of the PDC-dAD depression diagnosis showed more depressive symptoms than residents who were not. The mean number of depressive symptoms was 5.6 (SD 1.84), which did not differ between the dementia stages. Also, no differences were found in the point prevalence of the shown symptoms between dementia stages., Conclusion: Irritability was put forward by the developers of the PDC-dAD, as one of the specific symptoms of depression in Alzheimer disease. This study shows that irritability is one of the most prevalent depressive symptoms in psychogeriatric nursing home residents diagnosed with comorbid depression. Irritability should therefore alert caregivers to the presence of depression and could help early recognition. The high-prevalence rate of comorbid depression in dementia in this setting justifies attention to early recognition and intervention.

The 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.

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.

Objectives: To assess incidence and outcome of depressive symptoms among nursing home (NH) patients and to identify clinical characteristics predicting onset and persistence of depressive symptoms., Methods: Depressive symptoms (GDS>10) and relevant correlates were assessed at baseline and at follow-up (6 months) in 350 NH-patients of 14 Dutch NH's with the Geriatric Depression Scale (GDS). Predictors of onset and persistence were studied using chi-square statistics and multiple logistic regression analyses., Results: The prevalence of depressive symptoms decreased from 41.3% to 28.9% during six months follow-up. The onset of depressive symptoms in those without depressive symptoms at baseline was 4.7%, while the rate of persistence was 63.3%. Persistence of depressive symptoms was more frequent in patients with higher GDS-scores (18-30) at baseline. No baseline characteristics were associated with onset of depressive symptoms. Persistence of depressive symptoms was only associated with more years of education., Conclusions: Pre-admission factors and transition may largely be responsible for depressive symptoms among nursing home patients. The observed substantial decrease in prevalence of depressive symptoms over six months is largely due to remission of depressive symptoms present at baseline. Adaptation of nursing home patients to pre-admission factors, facilitated by the nursing home environment, may explain this observed decrease of depressive symptoms. Future studies should evaluate interventions targeted at patients with higher GDS-scores (18-30).

The aim of this study was to determine the effect of frailty on the risk of residential/nursing home admission independently of chronic diseases and functional limitations. Frailty consists of multisystem decline and is considered to be a consequence of changes in neuromuscular, endocrine and immune system functioning that occur as people age. Frailty is a combination of multiple impairments in functioning that might lead to functional limitations and disability but it is not clear whether frailty has an independent effect on residential/nursing home admission. Data were used from the Longitudinal Aging Study Amsterdam. The respondents participated at both T 1 (1992/1993) and T 2 (1995/1996), lived independently at T 2 , and were aged 65 and over ( n =1,503). Nine frailty markers were assessed at two cycles ( T 1 and T 2 ). The frailty markers were defined in two ways: low functioning at T 2 (static frailty); and change in functioning between T 1 and T 2 (dynamic frailty). The outcome variable was residential/nursing home admission between T 2 and T 4 (2001/2002). Cox proportional hazard analyses were used adjusting for chronic diseases, functional limitations, care received, partner status, income, age and sex. Static (RR 1.93, 95%CI 1.36-2.74) and dynamic frailty (RR 1.69, 95%CI 1.19-2.39) were associated with institutionalization in both men and women independently of the effect of chronic diseases and functional limitations. Additional analyses of the total number of both sets of frailty markers present revealed an increased risk of institutionalization when the number increased. In conclusion, frailty is associated with institutionalization, independently of the effect of chronic diseases and functional limitations.

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.

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.

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.