Raymond T. C. M. Koopmans

White paper defining optimal palliative care in older people with dementia: A Delphi study and recommendations from the European Association for Palliative Care

Background: Dementia is a life-limiting disease without curative treatments. Patients and families may need palliative care specific to dementia. Aim: To define optimal palliative care in dementia. Methods: Five-round Delphi study. Based on literature, a core group of 12 experts from 6 countries drafted a set of core domains with salient recommendations for each domain. We invited 89 experts from 27 countries to evaluate these in a two-round online survey with feedback. Consensus was determined according to predefined criteria. The fourth round involved decisions by the core team, and the fifth involved input from the European Association for Palliative Care. Results: A total of 64 (72%) experts from 23 countries evaluated a set of 11 domains and 57 recommendations. There was immediate and full consensus on the following eight domains, including the recommendations: person-centred care, communication and shared decision-making; optimal treatment of symptoms and providing comfort (these two identified as central to care and research); setting care goals and advance planning; continuity of care; psychosocial and spiritual support; family care and involvement; education of the health care team; and societal and ethical issues. After revision, full consensus was additionally reached for prognostication and timely recognition of dying. Recommendations on nutrition and dehydration (avoiding overly aggressive, burdensome or futile treatment) and on dementia stages in relation to care goals (applicability of palliative care) achieved moderate consensus. Conclusion: We have provided the first definition of palliative care in dementia based on evidence and consensus, a framework to provide guidance for clinical practice, policy and research.

Prevalence and predictors of neuropsychiatric symptoms in cognitively impaired nursing home patients.

The prevalence of neuropsychiatric symptoms and the influence of predictive factors in cognitively impaired nursing home patients were reviewed. Articles were identified by means of a MEDLINE and PsychInfo literature search. Neuropsychiatric symptoms were present in more than 80% of the cognitively impaired patients. Prevalences ranged considerably, from 3% to 54% for delusions, 1% to 39% for hallucinations, 8% to 74% for depressed mood, 7% to 69% for anxiety, 17% to 84% for apathy, 48% to 82% for aggression or agitation, and 11% to 44% for physical aggression. Neuropsychiatric symptoms seemed to be predicted not only by dementia type or stage but also by the psychosocial environment and the amount of psychoactive medication and physical restraints used. Neuropsychiatric symptoms are common and influenced by both the disease itself and the psychosocial environment of the institutional setting. The latter may have important consequences for staff planning and education and the future design of care facilities.

The prevalence of pain in nursing home residents with dementia measured using an observational pain scale.

Background: Studies on pain and pain prevalence in older people with dementia are limited compared to those on cognitively intact older people. Pain prevalence rates in older people with dementia are estimated to be between 28% and 83%.

Impact of early onset dementia on caregivers: a review

When it comes to dementia, caregiving can have adverse effects on the psychological and physical health of the informal caregiver. As yet, little is known about the impact of caring for a young dementia patient. This review provides an overview of the literature concerning the impact of early onset dementia (EOD) on informal caregivers and on children of EOD patients. The available literature comparing the impact on EOD and late onset dementia (LOD) caregivers will also be provided.

Determinants of Quality of Life in Nursing Home Residents with Dementia

Aims: The goal of this study is to assess the relationship between quality of life (QoL), neuropsychiatric symptoms (NPS), psychotropic drug use (PDU) and patient characteristics in a large group of nursing home residents with dementia. Methods: This cross-sectional observational study included 288 individuals with dementia who reside in 14 special care units in 9 nursing homes. The following measures were used: the Qualidem scale to assess QoL, the Neuropsychiatric Inventory-Nursing Home version, the Global Deterioration Scale (GDS), the Severe Impairment Battery-short version, an Activities of Daily Living scale and PDU. Associations between QoL and NPS were examined using multivariate linear regression models with corrections for potential covariates. Results: The average age of the residents was 84 years (SD = ±7). Agitation, depression, psychosis, psychomotor agitation and psychotropic drugs were independently associated with poor QoL. In patients with mild to moderately severe dementia (GDS 4–6), NPS, PDU and cognitive impairment explained almost half of the variance in QoL scores. Agitation and depression were particularly strong predictors of poor QoL. In patients with severe dementia (GDS 7), agitation, depression, psychosis and cognitive impairment were associated with poor QoL. Conclusions: NPS, cognition and PDU independently impair QoL for patients in both the moderate and advanced stages of dementia. These results challenge existing pharmacological intervention strategies and highlight the need for psychosocial interventions in the treatment of NPS.

Improving person-centred care in nursing homes through dementia-care mapping: design of a cluster-randomised controlled trial.

BackgroundThe effectiveness and efficiency of nursing-home dementia care are suboptimal: there are high rates of neuropsychiatric symptoms among the residents and work-related stress among the staff. Dementia-care mapping is a person-centred care method that may alleviate both the resident and the staff problems. The main objective of this study is to evaluate the effectiveness and cost-effectiveness of dementia-care mapping in nursing-home dementia care.Methods/DesignThe study is a cluster-randomised controlled trial, with nursing homes grouped in clusters. Studywise minimisation is the allocation method. Nursing homes in the intervention group will receive a dementia-care-mapping intervention, while the control group will receive usual care. The primary outcome measure is resident agitation, to be assessed with the Cohen-Mansfield Agitation Inventory. The secondary outcomes are resident neuropsychiatric symptoms, assessed with the Neuropsychiatric Inventory - Nursing Homes and quality of life, assessed with Qualidem and the EQ-5D. The staff outcomes are stress reactions, job satisfaction and job-stress-related absenteeism, and staff turnover rate, assessed with the Questionnaire about Experience and Assessment of Work, the General Health Questionnaire-12, and the Maastricht Job Satisfaction Scale for Health Care, respectively. We will collect the data from the questionnaires and electronic registration systems. We will employ linear mixed-effect models and cost-effectiveness analyses to evaluate the outcomes. We will use structural equation modelling in the secondary analysis to evaluate the plausibility of a theoretical model regarding the effectiveness of the dementia-care mapping intervention. We will set up process analyses, including focus groups with staff, to determine the relevant facilitators of and barriers to implementing dementia-care mapping broadly.DiscussionA novelty of dementia-care mapping is that it offers an integral person-centred approach to dementia care in nursing homes. The major strengths of the study design are the large sample size, the cluster-randomisation, and the one-year follow-up. The generalisability of the implementation strategies may be questionable because the motivation for person-centred care in both the intervention and control nursing homes is above average. The results of this study may be useful in improving the quality of care and are relevant for policymakers.Trial registrationThe trial is registered in the Netherlands National Trial Register: NTR2314.

DUTCH ELDERLY CARE PHYSICIAN: A NEW GENERATION OF NURSING HOME PHYSICIAN SPECIALISTS

transaminase of 256 U/L (normal range 7–40 U/L), albumin of 3.6 g/dL (normal range 3.5–5.5 g/dL), international normalized ratio of 1.0 (normal range 0.8–1.2), carbohydrate antigen 19–9 of 438,075 U/mL (normal rangeo40 U/mL), and carcinoembryonic antigen of greater than 200 ng/mL (normal rangeo5.0 ng/mL). Her renal function was normal, with serum creatinine of 0.8 mg/dL (normal range 0.6–1.2 mg/dL), blood urea nitrogen of 20 mg/dL (normal range 7–18 mg/dL), and a calculated creatinine clearance of greater than 60 mL/min per 1.73 m (normal range). An ultrasound of her abdomen and kidneys was unremarkable. A noncontrast computed tomography scan and noncontrast magnetic resonance imaging showed a soft tissue mass in the porta hepatis associated with intrahepatic biliary dilatation. Over the next 7 days, her total bilirubin continued to rise as high as 15. An endoscopic retrograde cholangiopancreatography was attempted, but the procedure had to be aborted because of a stricture of the biliary duct secondary to the soft tissue mass. A percutaneous transhepatic biliary stent was placed, and the patient underwent a cholangiogram to confirm the location of the biliary stent. Approximately 24 hours after the procedure, the patient developed dyspnea with bibasilar crackles on examination. Her serum creatinine had increased from 0.8 to 3.1 mg/dL, and continued to rise to as high as 3.4 mg/dL, with a calculated creatinine clearance of less than 20 mL/ min per 1.73 m. Her blood urea nitrogen rose from 20 to 55 mg/dL, and her urine output dropped to 20 to 30 mL/h. A thorough chart review confirmed that no intravenous contrast was used during any of the procedures and that she had not received any nephrotoxic drugs. A renal and bladder ultrasound showed normal kidney architecture and minimal postvoid residual urine of 50 mL (normal range 50–100 mL). Urine analysis showed more than 15 granular casts, urine sodium of 96 mEq/L (normal rangeo40 mEq/ L), and a fractional excretion of sodium greater than 3% (normal range 1–3%). Stains for eosinophils were negative, and cultures showed no growth after 48 hours. This confirmed the diagnosis of acute tubular necrosis after the use of contrast in the biliary tree. This case demonstrates an example of acute tubular necrosis causing acute renal failure in patients undergoing a cholangiographic study. We could find only one retrospective study, published close to 25 years ago, that reported this phenomenon. Of the 72 patients with a mean age of 63, three (aged 70, 75, and 61) had a rise in serum creatinine of greater than 2 mg/dL within 24 hours of the procedure. Two of these patients had retention of contrast medium in the kidney demonstrated on abdominal roentgenogram. The patient’s renal failure was unprovoked by any other etiology. We hypothesize that the mechanism by which a cholangiogram can cause acute renal failure involves contrast entering the vascular system during the procedure. This might be due to direct entry secondary to local trauma or systemic absorption in the biliary circulation. Geriatricians and other physicians and health professionals who care for elderly patients should be aware of the risk of renal failure after cholangiography. Although this appears to be an infrequent phenomenon, it has the potential to acute volume overload, as it did in this patient, as well as permanent renal dysfunction.

International Survey of Nursing Home Research Priorities

This article reports the findings of a policy survey designed to establish research priorities to inform future research strategy and advance nursing home practice. The survey was administered in 2 rounds during 2013, and involved a combination of open questions and ranking exercises to move toward consensus on the research priorities. A key finding was the prioritization of research to underpin the care of people with cognitive impairment/dementia and of the management of the behavioral and psychological symptoms of dementia within the nursing home. Other important areas were end-of-life care, nutrition, polypharmacy, and developing new approaches to putting evidence-based practices into routine practice in nursing homes. It explores possible innovative educational approaches, reasons why best practices are difficult to implement, and challenges faced in developing high-quality nursing home research.

Prevalence and correlates of psychotropic drug use in Dutch nursing-home patients with dementia

BACKGROUND Neuropsychiatric symptoms in dementia patients are common and are often treated with psychotropic drugs. The aim of this study was to determine the prevalence and correlates of psychotropic drug use in Dutch nursing home patients with dementia. METHODS Psychotropic drug use of 1322 patients on 59 dementia special care units (SCUs) in 25 nursing homes was registered. Drugs were categorized according to the Anatomical Therapeutical Chemical classification (ATC). The influence of age, gender, dementia stage measured by the Global Deterioration Scale (GDS), and type of neuropsychiatric symptoms on psychotropic drug use was analyzed using binomial logistic regression analysis. RESULTS 63% of the patients used at least one psychotropic drug. Psychotropics in general and antipsychotics in particular were most frequently prescribed in GDS stage 6, and in patients aged between 65 and 75 years. Psychotropics in general were positively associated with depression, night-time behavior and agitation. Antipsychotic drug use was positively associated with psychosis, agitation and night-time behavior and was negatively associated with apathy. Anxiolytics were associated with age, psychosis, agitation and night-time behavior. Antidepressants were most frequently prescribed in GDS stage 6 and associated with female gender, agitation and depression. Sedatives were only associated with night-time behavior. CONCLUSION Nursing home patients with dementia have a high prevalence of psychotropic drug use. In particular, the association with neuropsychiatric symptoms raises questions of efficacy of these drugs and the risk of chronic use.

Neuropsychiatric symptoms in nursing home patients : Factor structure invariance of the dutch nursing home version of the neuropsychiatric inventory in different stages of dementia

Background/Aims: To examine the influence of dementia stage and psychoactive medication use on the factor structure of the Neuropsychiatric Inventory-Nursing Home version (NPI-NH) in Dutch nursing home patients. Methods: The NPI-NH was administered to a large sample of 1,437 patients with mild to severe dementia receiving nursing home care. Exploratory factor analysis was used to examine behavioural dimensions underlying neuropsychiatric symptoms indicated by the NPI-NH across dementia stages (as assessed with the Global Deterioration Scale – GDS) and in patients with or without psychoactive medication prescribed. Results: In GDS stages 4/5, 6 and 7, a 4- or 5-factor solution was found, with factors referred to as agitation/aggression, depression, psychosis, psychomotor agitation and apathy. These symptom clusters were replicated in the group of drug-naive patients, but only partially in the group of patients on psychoactive medication. Conclusion: The factor structure of the NPI-NH in nursing home patients is consistent with the clinical taxonomy of symptoms, is relatively stable across dementia stages, and is only moderately influenced by psychoactive medication use. The division of depression and apathy into separate behavioural dimensions – also in patients with severe dementia – may have important therapeutic consequences.