Jenny T. van der Steen

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.

Pneumonia: The Demented Patient's Best Friend? Discomfort After Starting or Withholding Antibiotic Treatment

OBJECTIVES: To assess suffering in demented nursing home patients with pneumonia treated with antibiotics or without antibiotics. This study should provide the first empirical data on whether pneumonia is a “friend” or an “enemy” of demented patients and promote a debate on appropriate palliative care.

Treatment of nursing home residents with dementia and lower respiratory tract infection in the United States and the Netherlands: An ocean apart

Objectives: To compare treatment of nursing home residents with dementia and lower respiratory tract infection (LRI) in Missouri and the Netherlands.

Antibiotic Use and Resistance in Long Term Care Facilities

INTRODUCTION The common occurrence of infectious diseases in nursing homes and residential care facilities may result in substantial antibiotic use, and consequently antibiotic resistance. Focusing on these settings, this article aims to provide a comprehensive overview of the literature available on antibiotic use, antibiotic resistance, and strategies to reduce antibiotic resistance. METHODS Relevant literature was identified by conducting a systematic search in the MEDLINE and EMBASE databases. Additional articles were identified by reviewing the reference lists of included articles, by searching Google Scholar, and by searching Web sites of relevant organizations. RESULTS A total of 156 articles were included in the review. Antibiotic use in long term care facilities is common; reported annual prevalence rates range from 47% to 79%. Part of the prescribed antibiotics is potentially inappropriate. The occurrence of antibiotic resistance is substantial in the long term care setting. Risk factors for the acquisition of resistant pathogens include prior antibiotic use, the presence of invasive devices, such as urinary catheters and feeding tubes, lower functional status, and a variety of other resident- and facility-related factors. Infection with antibiotic-resistant pathogens is associated with increased morbidity, mortality, and health care costs. Two general strategies to reduce antibiotic resistance in long term care facilities are the implementation of infection control measures and antibiotic stewardship. CONCLUSION The findings of this review call for the conduction of research and the development of policies directed at reducing antibiotic resistance and its subsequent burden for long term care facilities and their residents.

A Cross-Cultural Study of Physician Treatment Decisions for Demented Nursing Home Patients Who Develop Pneumonia

PURPOSE We wanted to explore factors that influence Dutch and US physician treatment decisions when nursing home patients with dementia become acutely ill with pneumonia. METHODS Using a qualitative semistructured interview study design, we collected data from 12 physicians in the Netherlands and 12 physicians in North Carolina who care for nursing home patients. Our main outcome measures were perceptions of influential factors that determine physician treatment decisions regarding care of demented patients who develop pneumonia. RESULTS Several themes emerged from the study. First, physicians viewed their patient care roles differently. Dutch physicians assumed active, primary responsibility for treatment decisions, whereas US physicians were more passive and deferential to family preferences, even in cases when they considered families’ wishes for care as inappropriate. These family wishes were a second theme. US physicians reported a perceived sense of threat from families as influencing the decision to treat more aggressively, whereas Dutch physicians revealed a predisposition to treat based on what they perceived was in the best interest of the patient. The third theme was the process of decision making whereby Dutch physicians based decisions on an intimate knowledge of the patient, and American physicians reported limited knowledge of their nursing home patients as a result of lack of contact time. CONCLUSION Physician-perceived care roles regarding treatment decisions are influenced by contextual differences in physician training and health care delivery in the United States and the Netherlands. These results are relevant to the debate about optimal care for patients with poor quality of life who lack decision-making capacity.

Severe dementia and adverse outcomes of nursing home-acquired pneumonia: evidence for mediation by functional and pathophysiological decline.

To assess whether the severity of dementia is related to unfavorable outcomes of nursing home‐acquired pneumonia and how this relationship is mediated.

Interventions targeting pain or behaviour in dementia: A systematic review

BACKGROUND Both pain and challenging behaviour are highly prevalent in dementia, and multiple studies show that some of these behaviours may be correlated. Pain, especially in non-communicative patients, can cause challenging behaviour, and treatment of pain therefore may have an effect on behaviour. This review aims to provide a comprehensive overview of the current state of evidence regarding the effectiveness of interventions targeting pain on the outcome behaviour, and interventions targeting behaviour on pain, in dementia. METHOD PubMed (MEDLINE), EMBASE, COCHRANE, CINAHL, PsychINFO and Web of Science were searched systematically. Studies were included if they focused on an intervention targeting a reduction in the persons distress, pain, and/or behaviour, and included adults with a main diagnosis of dementia. RESULTS Of a total of 893 potentially relevant publications that were identified, 16 publications met the inclusion criteria and were eligible for further analysis; 6 studies focused on a pain intervention targeting behaviour, 1 study focused on a behavioural intervention targeting pain, and 9 studies focused on an intervention targeting both pain and behaviour. CONCLUSION Available evidence suggests that (pain) interventions targeting behaviour, and (behavioural) interventions targeting pain are effective in reducing pain and behavioural symptoms in dementia.

Nursing Home Residents Dying With Dementia in Flanders, Belgium: A Nationwide Postmortem Study on Clinical Characteristics and Quality of Dying

OBJECTIVES There is a lack of large-scale, nationwide data describing clinical characteristics and quality of dying of nursing home residents dying with dementia. We set out to investigate quality of end-of-life care and quality of dying of nursing home residents with dementia in Flanders, Belgium. DESIGN/SETTING/PARTICIPANTS To obtain representativity, we conducted a postmortem study (2010) using random cluster sampling. In selected nursing homes, all deceased residents with dementia in a period of 3 months were reported. For each case, a structured questionnaire was filled in by the nurse most involved in care, the family physician, and the nursing home administrator. We used the Cognitive Performance Scale and Global Deterioration Scale to assess dementia. Main outcome measures were health status, clinical complications, symptoms at the end of life, and quality of dying. MEASUREMENTS Health status, clinical complications, symptoms at the end of life, and quality of dying. RESULTS We identified 198 deceased residents with dementia in 69 nursing homes (58% response rate). Age distribution was the same as all deceased residents with dementia in Flanders, 2010. Fifty-four percent had advanced dementia. In the last month of life, 95.5% had 1 or more sentinel events (eg, eating/drinking problems, febrile episodes, or pneumonia); most frequently reported symptoms were pain, fear, anxiety, agitation, and resistance to care. In the last week, difficulty swallowing and pain were reported most frequently. Pressure sores were present in 26.9%, incontinence in 89.2%, and cachexia in 45.8%. Physical restraints were used in 21.4% of cases, and 10.0% died outside the home. Comparing stages of dementia revealed few differences between groups regarding clinical complications, symptoms, or quality of dying. CONCLUSION Regardless of the dementia stage, many nursing home residents develop serious clinical complications and symptoms in the last phase of life, posing major challenges to the provision of optimum end-of-life care.

Which Score Most Likely Represents Pain on the Observational PAINAD Pain Scale for Patients with Dementia

OBJECTIVES We sought to determine a cutoff score for the observational Pain Assessment in Advanced Dementia (PAINAD), to adequately assess pain in clinical nursing home practice and research. DESIGN AND SETTING We used data from multiple sources. We performed a literature review on PAINAD, performed secondary data analysis of a study examining psychometric properties of PAINAD in nursing home patients with dementia, and performed another study in nursing home patients with dementia specifically aimed at determining a cutoff score for PAINAD. PARTICIPANTS Patients with dementia in long term care facilities. MEASUREMENTS We related PAINAD scores (range 0 to 10) to (1) self-reported and proxy-reported pain by global clinical judgment and (2) scores on another pain assessment instrument (DOLOPLUS-2), and (3) we compared scores between painful and supposedly less painful conditions. RESULTS Findings from this study showed that a cutoff value of 2 should serve as a trigger for a trial with pain treatment. Although the majority of patients scoring 1 or 0 were not in pain, pain could be ruled out. CONCLUSION Based on the findings of multiple available data sources, we recommend that a PAINAD score of 2 or more can be used as an indicator of probable pain. A score of 1 is a sign to be attentive to possible pain. Future work may focus on cutoff scores for the presence of pain and severe pain in other frequently used pain tools, and on further development of methodology to assess cutoff scores.

The last days of life of nursing home patients with and without dementia assessed with the Palliative care Outcome Scale

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 patients 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.