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Background: During the course of dementia, most people develop some type of neuropsychiatric symptoms (NPS), which result in lower quality of life, high caregiver burden, psychotropic drug use and a major risk of institutionalization. Studies on NPS in people with dementia have been mainly conducted in clinical centres or psychiatric services.Objectives: To investigate the course of NPS in people with dementia in primary care.Methods: Analysis of (cumulative) prevalence and incidence, persistence and resolution based on data collected during an assessment at home of a prospective naturalistic cohort study in primary care in a sample of 117 people with dementia and their informal caregivers. Subsyndromes of NPS were assessed with the Neuropsychiatric Inventory (NPI) and Cohen-Mansfield Agitation Inventory. Multivariate analyses were used to detect determinants for the course of NPS.Results: The mean age of the people with dementia was 78.6 years, and 52% were female. Mean Mini-Mental State Examination total score was 19.5, mean NPI total score 15.7. The most prevalent clinically relevant subsyndromes of the NPI were hyperactivity and mood/apathy, and the most prevalent individual NPS were aberrant motor behaviour (28%), agitation/aggression (24%) and apathy/indifference (22%). Of the people with dementia, 72.3% had one or more symptoms of the mood/apathy and 75.3% of the hyperactivity subsyndrome.Conclusions: GPs should be aware of NPS in people with dementia and should actively identify them when they visit these patients or when informal caregivers consult them. Timely diagnosing facilitates adequate professional care. [ABSTRACT FROM AUTHOR]

Background: Over the last 20 years, the effectiveness of complex care programs aiming to prevent adverse outcomes in frail elderly people has been disappointing. Recently, we found no effectiveness of the CareWell primary care program. It is largely unknown to what extent incomplete implementation of these complex interventions influences their outcomes.Objective: To examine the association between the degree of implementation of the CareWell program and the prevention of functional decline in frail elderly people.Methods: Quantitative process evaluation conducted alongside a cluster-controlled trial. Two hundred and four frail elderly participants from six general practitioner practices in the Netherlands received care according to the CareWell program, consisting of four key components: multidisciplinary team meetings, proactive care planning, case management and medication reviews. We measured time registrations of team meetings, case management and medication reviews and care plan data as stored in a digital information portal. These data were aggregated into a total implementation score (TIS) representing the program's overall implementation. We measured functional decline with the Katz-15 change score (follow-up score at 12 months minus the baseline score). The association between TIS and functional decline was analyzed with linear mixed model analyses.Results: We found no statistically significant differences in functional decline between TIS groups (F = 1.350, P = 0.245). In the groups with the highest TISs, we found more functional decline.Conclusion: A higher degree of implementation of the CareWell program did not lead to the prevention of functional decline in frail elderly people. [ABSTRACT FROM AUTHOR]

Background: Neuropsychiatric symptoms (NPS) frequently occur in community-dwelling patients with dementia and they are also frequently prescribed psychotropic drugs. The prescription of psychotropic drugs has been found to be associated with the level of NPS. Data on NPS in patients with dementia in general practices are scarce.Objectives: The aim of this study was to assess the prevalence rates of NPS and psychotropic drug use (PDU) in patients with dementia in general practices.Methods: We analyzed data from the baseline measurement of a prospective cohort study in a sample of (Dutch) patients in general practices. Prevalence rates of NPS and subsyndromes assessed with the Neuropsychiatric Inventory (NPI) and of PDU were calculated. Prevalence rates of individual NPS are presented both as clinically relevant symptoms (NPI symptom score ≥ 4) and as prevalence rates of symptoms with symptom score > 0.Results: Of the 117 patients, more than 90% had at least one symptom and more than 65% had at least one clinically relevant symptom. The most common NPS were agitation/aggression, dysphoria/depression and irritability/lability. The most common clinically relevant NPS were aberrant motor behaviour, agitation/aggression and apathy/indifference. Only 28.7% of the patients used at least one, 7.0% used at least two different and 1.7% used at least three different types of psychotropic drugs (excluding anti-dementia medication).Conclusions: NPS are highly prevalent in patients with dementia in general practices, but PDU is rather low. The most common clinically relevant NPS were aberrant motor behaviour, agitation/aggression and apathy/indifference. [ABSTRACT FROM AUTHOR]

Background: Pneumonia in people with dementia has been associated with severe discomfort. We sought to assess the effectiveness of a practice guideline for optimal symptom relief for nursing home residents with dementia and pneumonia.Methods: A single-blind, multicenter, cluster randomized controlled trial was conducted in 32 Dutch nursing homes. Outcomes were assessed on the patient level. The main outcome measures were discomfort and symptoms: discomfort (DS-DAT: Discomfort Scale-Dementia of Alzheimer Type), (lack of) comfort (EOLD-CAD: End Of Life in Dementia-Comfort Assessment in Dying), pain (PAINAD: Pain Assessment in Advanced Dementia), and respiratory distress (RDOS: Respiratory Distress Observation Scale). Outcomes were scheduled daily from diagnosis until 10 days later and a final time between 13-15 days from diagnosis by trained observers who were blinded to the intervention and the residents' condition and treatment. In a pre-intervention phase, usual care was provided to all homes. In the intervention phase, matched clusters of homes were randomized to either the control (n = 16) or intervention condition (n = 16).Results: Between 1 January 2012 and 1 May 2015, 464 episodes of pneumonia were included. Outcomes were obtained for 399 episodes in 367 residents. Longitudinal multilevel linear regression analyses were performed on log-transformed outcomes, so coefficients should be interpreted as a ratio, and a coefficient of 1 means no difference. The practice guideline in the intervention phase did not reduce the level of discomfort and symptoms: DS-DAT: 1.11 (95 % CI 0.93-1.31), EOLD-CAD: 1.01 (95 % CI 0.98-1.05), PAINAD: 1.04 (95 % CI 0.93-1.15), RDOS: 1.11 (95 % CI 0.90-1.24). However, in both the intervention and control groups, lack of comfort and respiratory distress gradually decreased during the entire 3.5 years of data collection, and were lower in the intervention phase compared to the pre-intervention phase: DS-DAT: 0.93 (95 % CI 0.85-1.01), EOLD-CAD: 0.98 (95 % CI 0.97-1.00), PAINAD: 0.96 (95 % CI 0.91-1.01), RDOS: 0.92 (95 % CI 0.87-0.98).Conclusions: When compared to usual care, the practice guideline for optimal symptom relief did not relieve discomfort and symptoms in nursing home residents with dementia and pneumonia. However, discomfort and symptoms decreased gradually throughout the data collection in both the intervention homes and the control homes. An intervention that focuses on creating awareness may be more effective than a physician practice guideline.Trial Registration: The Netherlands National Trial Register (ID number NTR5071 . Registered 10 March 2015). [ABSTRACT FROM AUTHOR]

Background: The course of psychological distress in informal caregivers of patients with dementia has been investigated in longitudinal studies with conflicting outcomes.Objectives: We investigated the course and determinants of psychological distress in informal caregivers of patients with dementia in primary care.Methods: In this prospective observational cohort study, data were collected at baseline, after 9 and 18 months. We assessed cognition and neuropsychiatric symptoms (NPS) of the patient (Mini-Mental State Examination and Neuropsychiatric Inventory) and psychological distress (Sense of Competence Questionnaire, Center for Epidemiological Studies Depression scale and General Health Questionnaire 12-tem version) of the informal caregivers. Determinants for the course of psychological distress were caregivers' age, gender and relationship with the patient, patients' cognition and NPS, participation in a care program and admission to long-term care facilities (LTCF). With linear mixed models, the course over time for psychological distress and its determinants were explored.Results: We included 117 informal caregivers, of whom 23.1% had a high risk for depression and 41.0% were identified to be likely to have mental problems at baseline. We found a stable pattern of psychological distress over time. Higher frequency of NPS, informal caregivers' age between 50 and 70 years and being female or spouse were associated with higher psychological distress. For patients who were admitted to a LTCF during the study psychological distress of the informal caregivers improved.Conclusions: GPs should focus on NPS in patients with dementia and on caregivers' psychological distress and be aware of their risk for depression and mental problems, specifically to those who are spouse, female or between 50 and 70 years of age. [ABSTRACT FROM AUTHOR]

Objective: to identify important demographic, clinical and functional determinants of successful discharge of geriatric patients from skilled nursing facilities (SNFs), particularly the role of multi-morbidity.Design: prospective cohort study with data collection at baseline and at discharge.Setting: fifteen SNFs in the Netherlands.Participants: of 378 eligible patients, 186 were included.Methods: multi-disciplinary teams recorded demographic and disease characteristics, as well as functional status, cognitive functioning and multi-morbidity on admission. The study outcomes were discharge to an independent living situation within 1 year of admission and functional status at discharge (Barthel index).Results: of the included 186 patients, 175 were followed up. Of these patients, 123 (70%) were successfully discharged. High Berg Balance Scale (BBS) and Star Cancellation test (SCT) scores independently contributed to 48% of the variance of functional status at discharge, while low age, high BBS and SCT scores were independently related to successful discharge, explaining 33% of the variance. Multi-morbidity was not an independent determinant of rehabilitation outcome.Conclusion: geriatric patients admitted for ‘low intensity’ rehabilitation in SNFs after stroke appeared to have a fair prognosis for being successfully discharged. Postural control was an important determinant of both outcome measures. [ABSTRACT FROM PUBLISHER]

Context: A gold standard or validated tool for monitoring the level of discomfort during continuous palliative sedation (CPS) is lacking. Therefore, little is known about the course of discomfort in sedated patients, the efficacy of CPS, and the determinants of discomfort during CPS.Objectives: To identify the course of discomfort in patients receiving CPS.Methods: A prospective observational multicenter study in nine hospices and palliative care units was performed. The Discomfort Scale-Dementia of Alzheimer Type (DS-DAT) was independently assessed for monitoring of patient discomfort during CPS. The DS-DAT scores range from 0 (no observed discomfort) to a maximum of 27 (high level of observed discomfort). Using a mixed model, the mean group score of discomfort between four predefined time frames of CPS was compared, correcting for confounding patient characteristics.Results: A total of 130 patients were sedated, and the DS-DAT was completed in 106 patients at least once. The median duration of the sedation in these 106 patients was 25.5 hours (range 2-161). The mean score of the DS-DAT in the phase before sedation was 12.16 (95% CI 9.83-14.50) and decreased significantly to 8.06 (95% CI 5.53-10.58) in the titration phase of sedation. The mean score of the DS-DAT in the final phase of sedation was 7.42 (95% CI 4.90-9.94).Conclusion: This study shows that CPS is associated with a decrease in the level of discomfort within an acceptable time frame, although in some sedated patients higher levels of discomfort in the last hours of life occurred. Although the DS-DAT seems to be of value for monitoring the level of discomfort during CPS, the results of this study should be interpreted within the constraints of the limitations, and further research on the psychometric properties of this tool is needed before the DS-DAT can be used in clinical practice. [ABSTRACT FROM AUTHOR]

Context: Knowledge of determinants that are associated with the administration of continuous palliative sedation (CPS) helps physicians identify patients who are at risk of developing refractory symptoms, thereby enabling proactive care planning.Objectives: This study aims to explore which patient-related factors at admission are associated with receiving CPS later in the terminal phase of life.Methods: A prospective multicenter observational study was performed in six Dutch hospices and three nursing home-based palliative care units. The association between patient-related variables at admission (age, gender, diagnosis, use of opioids or psycholeptics, number of medications, Karnofsky Performance Status scale score, Edmonton Symptom Assessment System distress score, and Glasgow Coma Scale score) and the administration of CPS at the end of life was analyzed.Results: A total of 467 patients died during the study period, of whom 130 received CPS. In univariate analysis, statistically significant differences were noted between the sedated and nonsedated patients with respect to younger age (P = 0.009), malignancy as a diagnosis (P = 0.05), higher Karnofsky Performance Status score (P = 0.03), the use of opioids (P < 0.001), the use of psycholeptics (P = 0.003), and higher Edmonton Symptom Assessment System distress score (P = 0.05). Multivariate logistic regression analysis showed that only the use of opioids at admission (odds ratio 1.90; 95% confidence interval 1.18-3.05) was significantly associated with the administration of CPS.Conclusion: Physicians should be aware that patients who use opioids at admission have an increased risk for the administration of CPS at the end of life. In this group of patients, a comprehensive personalized care plan starting at admission is mandatory to try to prevent the development of refractory symptoms. Further research is recommended, to identify other determinants of the administration of CPS and to investigate which early interventions will be effective to prevent the need for CPS in patients at high risk. [ABSTRACT FROM AUTHOR]