C.M.P.M. Hertogh

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.

The Persistent Exclusion of Older Patients From Ongoing Clinical Trials Regarding Heart Failure

BACKGROUND Much clinical research of relevance to elderly patients examines individuals who are younger than those who have the disease in question. A good example is heart failure. Therefore, we investigated the extent of exclusion of older individuals in ongoing clinical trials regarding heart failure. METHODS In the context of the Increasing the PaRticipation of the ElDerly in Clinical Trials (PREDICT) study, data from ongoing clinical trials regarding heart failure were extracted from the World Health Organization Clinical Trials Registry Platform on December 1, 2008. Main outcome measures were the proportion of trials excluding patients by an arbitrary upper age limit or by other exclusion criteria that might indirectly cause limited recruitment of older individuals. We classified exclusion criteria into 2 categories: justified or poorly justified. RESULTS Among 251 trials investigating treatments for heart failure, 64 (25.5%) excluded patients by an arbitrary upper age limit. Such exclusion was significantly more common in trials conducted in the European Union than in the United States (31/96 [32.3%] vs 17/105 [16.2%]; P = .007) and in drug trials sponsored by public institutions vs those by private entities (21/59 [35.6%] vs 5/36 [13.9%]; P = .02). Overall, 109 trials (43.4%) on heart failure had 1 or more poorly justified exclusion criteria that could limit the inclusion of older individuals. A similar proportion of clinical trials with poorly justified exclusion criteria was found in pharmacologic and nonpharmacologic trials. CONCLUSION Despite the recommendations of national and international regulatory agencies, exclusion of older individuals from ongoing trials regarding heart failure continues to be widespread.

Ethics of using assistive technology in the care for community-dwelling elderly people: An overview of the literature

Objectives: This article provides an overview of the international literature on the most important ethical considerations in the field of assistive technology (AT) in the care for community-dwelling elderly people, focused on dementia. Method: A systematic literature review was performed. Results: A total of 46 papers met the inclusion criteria. Three main themes were found. The first theme, personal living environment, involves the subthemes privacy, autonomy and obtrusiveness. The second theme, the outside world, involves the subthemes stigma and human contact. The third theme, the design of AT devices, involves the subthemes individual approach, affordability and safety. The often referred to umbrella term of ‘obtrusiveness’ is frequently used by many authors in the discussion, while a clear description of the concept is mostly absent. Conclusion: When it comes to AT use in the care for elderly people living at home, ethical debate appears not to be a priority. The little discussion there relies heavily on thick concepts such as autonomy and obtrusiveness which seem to complicate the debate rather than clarify it, because they contain many underlying ambiguous concepts and assumptions. Most encountered ethical objections originate from the view that people are, or should be, independent and self-determinant. It is questionable whether the view is correct and helpful in the debate on AT use in the care for (frail) elderly people. Other ethical approaches that view people as social and reciprocal might be more applicable and shed a different light on the ethical aspects of AT use.

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.

Exclusion of older people from clinical trials: professional views from nine European countries participating in the PREDICT study.

AbstractBackground: There has been concern about under-representation of older people in clinical trials. The PREDICT study reported that older people and those with co-morbidity continue to be excluded unjustifiably from clinical trials. However, there is no information about differences of opinion on these issues between EU countries. The results of a survey of health-related professionals from nine EU countries that participated in the PREDICT study are presented in this study. Objective: The aim of the study was to identify and examine any differences of opinion between EU countries on the inclusion of older patients in clinical trials. Methods: A questionnaire using a Likert scale and free text was completed by 521 general practitioners, geriatricians, clinical researchers, ethicists, nurses and industry pharmacologists/pharmacists. The questions explored the impact of the present situation, possible reasons for under-representation and potential methods of improving participation. Countries participating were the Czech Republic, Israel, Italy, Lithuania, the Netherlands, Poland, Romania, Spain and the UK. Results: There was agreement that exclusion from clinical trials on age grounds alone was unjustified (87%) and that under-representation of older people in trials caused difficulties for prescribers (79%) and patients (73%). There were national differences between professionals. All but the Lithuanians believed that older people were disadvantaged because of under-representation. The Czech, Lithuanian and Romanian professionals felt that it was justified to have age limits based on co-morbidity (61–83%) and polypharmacy (63–85%). Romanians also thought that having age limits on trial participation was justified because of reduced life expectancy (62%) and physical disability (58%) in older people. All but the Romanian professionals felt that the present arrangements for clinical trials were satisfactory (62%). All but the Israelis (56%) and Lithuanians (70%) agreed that regulation of clinical trials needed alteration. Conclusions: Although respondent selection bias cannot be excluded, the differences that emerged between countries may be the result of the political and healthcare-system differences between older and newer members of the EU. These differences may influence decision making about clinical trial regulations and practice in older people.

Reasons to Prescribe Antipsychotics for the Behavioral Symptoms of Dementia: A Survey in Dutch Nursing Homes Among Physicians, Nurses, and Family Caregivers

OBJECTIVES Despite serious safety concerns, prescription rates of antipsychotics for the treatment of the behavioral and psychological symptoms of dementia remain high, especially in nursing homes. This high prevalence of antipsychotic use cannot be explained by the modest success rate reported in the literature. In this study, we aim at clarifying the reasons for prescribing an antipsychotic drug in behavioral and psychological symptoms of dementia and look at the role of nurses and family caregivers in the decision-making process that precedes the prescription of an antipsychotic drug. DESIGN Questionnaire used in a one-on-one interview with elderly care physicians, nurses, and family caregivers. SETTING We conducted a survey in 23 nursing homes in the Netherlands. METHOD On each dementia ward, the physician selected 1 or 2 patients who started antipsychotics most recently. An interviewer then held a structured questionnaire with the physician, the nurse, and the first relative of the patient. The first part of the interview consisted of questions about the general ideas of the physicians and the second part consisted of case-related questions to physicians, nurses, and family caregivers. RESULTS Physicians, nurses, and family caregivers generally consider the possible benefits of antipsychotics to outweigh the risk of side effects. The main reasons to start therapy are agitation and aggression. Physicians felt pressured by nurses to prescribe in 17% of cases. Physicians felt supported by the guideline of the Dutch Association of Elderly Care Physicians. The estimated average success rate in the discussed cases (the patient is expected to improve on the target behavior) among physicians was 50%, nurses reported 53%, and relatives 55%. The most frequently expected adverse reactions were increased fall risk, sedation, and parkinsonism. Nurses expected cognitive decline. The family felt insufficiently informed about the side effects in 44% of the cases. CONCLUSION The interviewed nursing home physicians and nurses expect almost half of their patients with dementia and behavioral disturbances to benefit from antipsychotic therapy. Serious side effects were expected to occur only sporadically. These expectations may contribute to the high rate of antipsychotic use among these patients.

From admission to death: prevalence and course of pain, agitation, and shortness of breath, and treatment of these symptoms in nursing home residents with dementia

OBJECTIVES Burdensome symptoms frequently develop as part of the dementia trajectory and influence quality of life. We explore the course of symptoms and their treatment during nursing home stay to help target adequate symptom management. DESIGN Data were collected as part of the Dutch End of Life in Dementia study, a longitudinal observational study with up to 3.5 years of follow-up. Physicians performed assessments at baseline, semiannually, and shortly after death of pain, agitation, shortness of breath, and treatment provided for these symptoms. SETTING Long-term care facilities (28) in the Netherlands. PARTICIPANTS Newly admitted nursing home residents (372) in variable stages of dementia. MEASUREMENTS We described prevalence and course of symptoms, and treatment provided for these symptoms. We used generalized estimating equations to evaluate the longitudinal change in symptoms and their treatment, and the associations between the symptoms of pain and agitation, as well as between stage of dementia and symptoms. RESULTS Pain was common (varying from 47% to 68% across the semiannual assessments) and frequently persistent (36%-41% of all residents); it increased to 78% in the last week of life. Agitation was the most common symptom (57%-71%), and also frequently persistent (39%-53%), yet it decreased to 35% in the last week of life. Shortness of breath was less common (16%-26%), but it increased to 52% at the end of life. Pain was not significantly associated with agitation. Advanced dementia was associated with more pain only. Treatment changed in particular at the end of life. Pain was treated mostly with acetaminophen (34%-52%), and at the end of life with parenteral opioids (44%). Agitation was mostly treated nonpharmacologically (78%-92%), and at the end of life anxiolytics were the most frequently prescribed treatment (62%). Overall, aerosolized bronchodilators were the most frequently prescribed treatment for shortness of breath (29%-67%), but at the end of life, this was morphine (69%). CONCLUSION Pain and agitation were common and frequently persisted in residents with dementia during nursing home stay, but symptom management intensified only at the end of life. Symptom control may be suboptimal from admission, and a stronger focus on symptom control is needed at an earlier stage than the end of life.

Nurses in distress? An explorative study into the relation between distress and individual neuropsychiatric symptoms of people with dementia in nursing homes

To optimize care and interventions to improve care, and to reduce staff burden, it is important to have knowledge of the relation between individual neuropsychiatric symptoms and distress of care staff. We therefore explored the relation between frequency and severity of individual neuropsychiatric symptoms and distress of care staff.

Coming to Grips With Challenging Behavior: A Cluster Randomized Controlled Trial on the Effects of a Multidisciplinary Care Program for Challenging Behavior in Dementia

OBJECTIVES The Grip on Challenging Behavior care program was developed using the current guidelines and models on managing challenging behavior in dementia in nursing homes. It was hypothesized that the use of the care program would lead to a decrease in challenging behavior and in the prescription of psychoactive drugs without increase in use of restraints. DESIGN A randomized controlled trial was undertaken using a stepped-wedge design to implement the care program and to evaluate the effects. An assessment of challenging behavior and psychoactive medication was undertaken every 4 months on all participating units followed by the introduction of the care program in a group of 3 to 4 units. A total of 6 time assessments took place over 20 months. SETTING Seventeen dementia special care units of different nursing homes. PARTICIPANTS A total of 659 residents of dementia special care units. All residents with dementia on the unit were included. Units were assigned by random allocation software to 1 of 5 groups with different starting points for the implementation of the care program. INTERVENTION A care program consisting of various assessment procedures and tools, which ensure a multidisciplinary approach and which structure the process of managing challenging behavior in dementia. MEASUREMENTS Challenging behavior was measured using the Cohen-Mansfield Agitation Inventory (CMAI) and the Neuropsychiatric Inventory. Research assistants (blinded for intervention status of the unit) interviewed nurses on the units about challenging behavior. Data on psychoactive drugs and restraints were retrieved from resident charts. RESULTS A total of 2292 assessments took place involving 659 residents (1126 control measurements, 1166 intervention measurements). The group of residents who remained in the intervention condition compared with the group in the control condition differed significantly in the CMAI change scores between successive assessments [-2.4 CMAI points, 95% confidence interval (CI) -4.3 to -0.6]. No significant effects were found for the control-to-intervention group compared with the group who remained in the control group (0.0 CMAI points, 95% CI -2.3 to 2.4). Significant effects were found on 5 of the 12 Neuropsychiatric Inventory items and on the use of antipsychotics (odds ratio 0.54, 95% CI 0.37- 0.80) and antidepressants (odds ratio 0.65, 95% CI 0.44-0.94). No effect on use of restraints was observed. CONCLUSIONS The Grip on Challenging behavior program was able to diminish some forms of challenging behavior and the use of psychoactive drugs.

Advance Directives for Euthanasia in Dementia: How Do They Affect Resident Care in Dutch Nursing Homes? Experiences of Physicians and Relatives

OBJECTIVES: To gain insight into how advance directives for euthanasia affect resident care in Dutch nursing homes.