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Objectives: Vascular cognitive impairment is the second most common type of cognitive impairment. Care needs of community-dwelling people with vascular cognitive impairment and their caregivers have not been thoroughly studied. Therefore, we aimed to explore care needs of people with vascular cognitive impairment and their family caregivers., Design: A qualitative interview study., Setting and Participants: Participants were purposefully sampled community-dwelling people with vascular cognitive impairment and their family caregivers., Methods: Interviews were audiotaped and transcribed verbatim. Analysis and data collection followed an iterative process, until data saturation was achieved. We conducted 18 interviews (nine people with vascular cognitive impairment and nine caregivers), concerning 13 unique people with vascular cognitive impairment. We analyzed the data using inductive thematic analysis following the Braun & Clark method. The study was reported in accordance with the COREQ criteria., Findings: Five themes were identified in the care needs reported by people with vascular cognitive impairment and family caregivers: (1) Specific information need with subtheme (1A) No memory problem, no dementia? (2) Being respected as a person, (3) Differing concerns about the future, (4) The roles of the caregiver and (5) Decisiveness from professional healthcare., Conclusions and Implications: The care needs of people with vascular cognitive impairment and their caregivers were affected by (a lack of knowledge about) the characteristic symptoms of this condition. Participants equated cognitive impairment or dementia to memory loss ("Alzheimerization"), although memory loss was not their biggest challenge. People with vascular cognitive impairment and caregivers preferred resolute and decisive healthcare professionals. These professionals activate the person with vascular cognitive impairment who lacks initiative and diminishe role conflict of the caregiver. Care for people with vascular cognitive impairment and their caregivers could be improved by providing tailored information, promoting awareness of neuropsychiatric symptoms, particularly apathy, and by healthcare professionals providing more guidance in decision-making., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: ES is recipient of an Alzheimer Nederland Grant [projectnumber WE.09-2022-01], which supports another research project of SvdS. HR performs contract research for Combinostics, all funding is paid to her institution, and is recipient of the Memorabel Dementia Fellowship 2021 [ZonMw projectnumber 10510022110004]. HR and MM are part of the Heart-Brain Connection crossroads (HBCx) consortium of the Dutch CardioVascular Alliance (DCVA). HBCx has received funding from the Dutch Heart Foundation [under grant agreements 2018-28 and CVON 2012-06]. Other authors report no potential conflicts of interest.

This study aims to benchmark mean societal costs per client in different home care models and to describe characteristics of home care models with the lowest societal costs. In this prospective longitudinal study in 6 European countries, 6-month societal costs of resource utilization of 2060 older home care clients were estimated. Three care models were identified and compared based on level of patient-centered care (PCC), availability of specialized professionals (ASP) and level of monitoring of care performance (MCP). Differences in costs between care models were analyzed using linear regression while adjusting for case mix differences. Societal costs incurred in care model 2 (low ASP; high PCC & MCP) were significantly higher than in care model 1 (high ASP, PCC & MCP, mean difference €2230 (10%)) and in care model 3 (low ASP & PCC; high MCP, mean difference €2552 (12%)). Organizations within both models with the lowest societal costs, systematically monitor their care performance. However, organizations within one model arranged their care with a low focus on patient-centered care, and employed mainly generalist care professionals, while organizations in the other model arranged their care delivery with a strong focus on patient-centered care combined with a high availability of specialized care professionals., Competing Interests: Declaration of Conflicting Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2021.)

Background: In the Netherlands, people with severe cognitive deficits due to Korsakoff syndrome are generally admitted to a specialized nursing home. Professional caregivers experience that these residents are often not aware of their deficits, and consequently, their willingness to accept care is relatively low. However, these residents need permanent support when performing daily tasks due to severe cognitive deficits. The combination of objective care needs and low subjective responsiveness makes caring for people with Korsakoff syndrome a complex undertaking. It is unknown how professional caregivers deal with this complex task and how they manage the associated ethical challenges., Objectives: The aim of this study was to explore the professional caregivers' perspectives on good care for residents with Korsakoff syndrome., Methods: A qualitative study design was used. Data were collected via semi-structured interviews. The Framework Method was used for the thematic analyses of the interview data., Participants and Research Context: Five specialized nursing homes participated in this study. Twelve professional caregivers, including nurses, nursing assistants, and support workers, were selected based on the ability to provide rich information on the study topics and to capture a variety of demographic and professional characteristics., Ethical Considerations: The institutional review board of the VU University Medical Center Amsterdam approved the research protocol. The study was conducted in accordance with the ethical principles for medical research involving human subjects., Findings: Three perspectives on good care emerged: (1) making daily life a joint effort, (2) being steadfast, and (3) treating with respect., Discussion and Conclusion: Professional caregivers try to achieve responsiveness in people with Korsakoff syndrome in three different ways. These perspectives reflect fundamentally different views on the care relationship and the autonomy of the resident. By elucidating the three perspectives, we hope to promote the practitioners' reflection on their own ideas about good care for people with Korsakoff syndrome.

Introduction: Suspected urinary tract infection (UTI) ranks among the most common reasons for antibiotic use in nursing homes. However, diagnosing UTI in this setting is challenging because UTI often presents with non-specific symptomatology. Moreover asymptomatic bacteriuria is common in elderly, which complicates attribution of causality to detection of bacteria in urine. These diagnostic challenges contribute to overuse of antibiotics and emergence of antimicrobial resistance in nursing homes. Given the diagnostic challenges, there is a need for point-of-care (POC) diagnostic tests to support clinical rules for diagnosing UTI. Procalcitonin (PCT) and C reactive protein (CRP) are inflammatory blood markers that have been proven useful to support diagnosis and monitoring of (bacterial) respiratory tract infections and sepsis. While limited studies suggest their usefulness in supporting UTI diagnosis, their utility has not been studied in elderly populations for this purpose., Methods and Analysis: In a 24-month matched prospective study, 'PROGRESS' will assess and compare the sensitivity of rapid POC measurements of blood CRP and PCT levels to support clinical rules for diagnosing UTI in nursing home residents. The primary outcome measure is sensitivity of the POC tests to identify patients with true UTI based on the predefined definition, as derived from receiver operating curves., Ethics and Dissemination: This study will be conducted in accordance with Good Clinical Practice guidelines and the principles of the Declaration of Helsinki. The study protocol is approved by the Medical Ethical Committee of Amsterdam UMC location VUmc with reference number 2017.350 and National Central Committee on Research involving Human Subjects with reference number NL62067.029.17., Trial Registration Number: NTR6467., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY. Published by BMJ.)

Objective: The Canadian province of Quebec has recently legalized medical aid in dying (MAID) for competent patients who satisfy strictly defined criteria. The province is considering extending the practice to incompetent patients. We compared the attitudes of four groups of stakeholders toward extending MAID to incompetent patients with dementia., Methods: We conducted a province-wide postal survey in random samples of older adults, informal caregivers of persons with dementia, nurses, and physicians caring for patients with dementia. Clinical vignettes featuring a patient with Alzheimer's disease were used to measure the acceptability of extending MAID to incompetent patients with dementia. Vignettes varied according to the stage of the disease (advanced or terminal) and type of request (written or oral only). We used the generalized estimating equation (GEE) approach to compare attitudes across groups and vignettes., Results: Response rates ranged from 25% for physicians to 69% for informal caregivers. In all four groups, the proportion of respondents who felt it was acceptable to extend MAID to an incompetent patient with dementia was highest when the patient was at the terminal stage, showed signs of distress, and had written a MAID request prior to losing capacity. In those circumstances, this proportion ranged from 71% among physicians to 91% among informal caregivers., Conclusion: We found high support in Quebec for extending the current MAID legislation to incompetent patients with dementia who have reached the terminal stage, appear to be suffering, and had requested MAID in writing while still competent., (© 2019 John Wiley & Sons, Ltd.)

Objective:: To explore the effect of goal-setting on physical functioning, quality of life and duration of rehabilitation in geriatric rehabilitation compared to care as usual., Data Sources:: Medline, Embase, CINAHL, PsycINFO and the Cochrane Library were searched from initiation to October 2018., Methods:: We included randomized controlled trials (RCTs), controlled before-after studies and studies using historic controls of older patients (mean age ⩾55 years) receiving rehabilitation for acquired disabilities. Our primary outcome was physical functioning; secondary outcomes were quality of life and rehabilitation duration. Cochrane guidelines were used to assess the risk of bias of the studies and extract data. Only RCT data were pooled using standardized mean difference (SMD)., Results:: We included 14 studies consisting of a total of 1915 participants with a mean age ranging from 55 to 83 years. Ten out of the 14 studies had a randomized controlled design, 7 of which could be pooled for the primary outcome. The risk of bias was judged high in several domains in all included studies. The meta-analysis showed no statistically significant differences between goal-setting and care as usual for physical functioning (SMD -0.11 (-0.32 to 0.10)), quality of life (SMD 0.09 (-0.56 to 0.75)) and rehabilitation duration (MD 13.46 days (-2.46 to 29.38))., Conclusion:: We found low-quality evidence that goal-setting does not result in better physical functioning compared to care as usual in geriatric rehabilitation. For quality of life and duration of rehabilitation, we could not exclude a clinically relevant effect.

Objectives: To elicit Quebec physicians' attitudes towards extending medical aid in dying (MAiD) to incompetent patients and to compare the attitudes of family physicians to those of other medical specialists., Methods: We conducted a postal survey among physicians caring for patients with dementia. We used hypothetical vignettes to elicit their attitudes towards MAiD and continuous deep sedation (CDS) to relieve suffering at end of life. Two patients were depicted in the vignettes: one with cancer eligible for MAiD and one with dementia. The generalized estimating equation approach was used to investigate factors associated with attitudes, including the stage of the illness (advanced vs terminal dementia) and the presence or absence of a prior written request., Results: A total of 136 physicians out of 653 returned the questionnaire. Physicians favoured CDS over MAiD for relieving suffering in the cancer vignette (93% vs 79%; p = 0.002). In advanced dementia, 45% of physicians supported giving the patient access to MAiD with a written request and 14% without such request. At the terminal stage of dementia, these proportions increased to 71% and 43%, respectively (p < 0.001), reaching 79% and 52% among family physicians. Support for CDS in terminal dementia was lower than in end-stage cancer (68% vs 93%; p < 0.001) and equal to MAiD with a written request (68% vs 71%; p = 0.623)., Conclusion: Many Quebec physicians support extending MAiD to incompetent patients with dementia to relieve suffering at the terminal stage. This finding will inform current deliberations as to whether MAiD should be extended to these patients.

Euthanasia is a controversial and complex issue, especially when involving incompetent patients. On December 10, 2015, Quebec became the first Canadian province to give access to medical aid in dying (MAiD) (ie, euthanasia performed by a physician) to competent patients who satisfy strictly defined criteria. Less than 2 years later, Quebec is considering extending MAiD to incompetent patients who made an advance request. With the objective of contributing scientific data to current societal debates, we conducted a survey among 471 informal caregivers of persons with dementia, reached through Alzheimer Societies. We used a series of vignettes featuring a person with Alzheimer disease to investigate respondents' attitudes towards MAiD. The response rate was 69%. Two-thirds [68%; 95% confidence interval, 63%-73%] found it acceptable to extend MAiD to an incompetent patient at an advanced stage of Alzheimer disease who had made a written request while competent, and 91% (95% confidence interval, 87%-94%) found it acceptable at the terminal stage. Self-determination was the most widely endorsed argument in favor of access to MAiD for incompetent patients. Findings suggest strong support among informal caregivers for extending MAiD to incompetent patients, provided they are terminally-ill and had made a written request before losing capacity.

We conducted a survey in a random sample of 514 Quebec nurses caring for the elderly to assess their attitudes towards extending medical aid in dying to incompetent patients and to explore associated factors. Attitudes were measured using clinical vignettes featuring a hypothetical patient with Alzheimer disease. Vignettes varied according to the stage of the disease (advanced or terminal) and the presence or absence of a written request. Of the 291 respondents, 83.5% agreed with the current legislation that allows physicians to administer aid in dying to competent patients who are at the end of life and suffer unbearably. A similar proportion (83%, p = 0.871) were in favor of extending medical aid in dying to incompetent patients who are at the terminal stage of Alzheimer disease, show signs of distress, and have made a written request before losing capacity., (Copyright © 2017 Elsevier Inc. All rights reserved.)

Background: Alzheimer's disease and related disorders affect a growing number of people worldwide. Quality of life is generally good in the early stages of these diseases. However, many individuals fear living through the advanced stages. Such fears are triggering requests for medical assistance in dying (MAiD) by patients with dementia. Legislation was recently passed in Canada and the province of Quebec allowing MAiD at the explicit request of a patient who meets a set of eligibility criteria, including competence. Some commentators have argued that MAiD should be accessible to incompetent patients as well, provided appropriate safeguards are in place. Governments of both Quebec and Canada are currently considering whether MAiD should be accessible through written requests made in advance of loss of capacity., Objective: Aimed at informing the societal debate on this sensitive issue, this study will compare stakeholders' attitudes towards expanding MAiD to incompetent patients with dementia, the beliefs underlying stakeholders' attitudes on this issue, and the value they attach to proposed safeguards. This paper describes the study protocol., Methods: Data will be collected via a questionnaire mailed to random samples of community-dwelling seniors, relatives of persons with dementia, physicians, and nurses, all residing in Quebec (targeted sample size of 385 per group). Participants will be recruited through the provincial health insurance database, Alzheimer Societies, and professional associations. Attitudes towards MAiD for incompetent patients with dementia will be elicited through clinical vignettes featuring a patient with Alzheimer's disease for whom MAiD is considered towards the end of the disease trajectory. Vignettes specify the source of the request (from the patient through an advance request or from the patient's substitute decision-maker), manifestations of suffering, and how close the patient is to death. Arguments for or against MAiD are used to elicit the beliefs underlying respondents' attitudes., Results: The survey was launched in September 2016 and is still ongoing. At the time of submission, over 850 respondents have returned the questionnaire, mostly via mail., Conclusions: This study will be the first in Canada to directly compare views on MAiD for incompetent patients with dementia across key stakeholder groups. Our findings will contribute valuable data upon which to base further debate about whether MAiD should be accessible to incompetent patients with dementia, and if so, under what conditions., (©Gina Bravo, Claudie Rodrigue, Vincent Thériault, Marcel Arcand, Jocelyn Downie, Marie-France Dubois, Sharon Kaasalainen, Cees M Hertogh, Sophie Pautex, Lieve Van den Block. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 13.11.2017.)

Aim: Little is known about the impact of activity-based funding (ABF) to increase treatment intensity and decrease length of stay (LOS) of inpatient geriatric patients. In January 2014, ABF was implemented in The Netherlands with the aim to increase treatment intensity and shorten LOS in geriatric rehabilitation (GR)., Objectives: To describe the influence of ABF on treatment intensity and LOS of inpatient GR patients before and after ABF was implemented., Design: Population-based, retrospective cohort study., Setting: Thirty nursing homes providing inpatient GR across The Netherlands., Data Collection: Digital medical records of patients who had received inpatient GR in Dutch nursing homes across The Netherlands were studied between January 1, 2013 and March 14, 2016. We calculated the mean treatment intensity in hours per week and median LOS in days in 3 cohorts according to the year of admittance. In addition, a historical representative cohort of GR patients who were admitted in 2007 was studied that represented the situation before the ABF reform was announced (eg, funding with a fixed price per day). In 2013, the funding with a fixed price per day was still in use but with compulsory ABF registration. In 2014 and 2015, the ABF was fully implemented. Statistical differences in treatment intensity and LOS were calculated between patients admitted in 2007 and 2013, 2013 and 2014, and 2013 and 2015. Statistical significance was set at a P value of <.02 (Bonferroni correction P = .05/3). Discharge destinations of patients discharged from March 1, 2015 to January 1, 2016 could be obtained and compared with 2007., Results: The treatment intensity and LOS of 16,823 GR patients could be obtained and compared with the historical cohort from 2007 (n = 2950). Patients who were admitted in the year 2013 received higher treatment intensities and had the same median LOS compared with 2007. After the implementation of ABF in January 2014, the mean treatment intensity increased significantly by 37% (3.8 hours/week in 2013, 4.7 hours/week in 2014, and 5.2 hours/week in 2015). This trend was significant across all rehabilitation diagnoses. After the implementation of ABF, the median LOS decreased significantly by 7 days (46 days in 2013, 42 days in 2014, and 39 days in 2015), which was consistent in all rehabilitation categories except for patients with a total joint replacement or amputation., Conclusions: Patients who received inpatient GR after introduction of ABF received higher treatment intensities and had a shorter LOS compared with the year before implementation., (Copyright © 2017 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Objective: Experiences from clinical practice suggest that behavioural symptoms in patients with Korsakoff syndrome (KS) are a frequent problem. Knowledge about behavioural symptoms is important in understanding and managing these symptoms. The aim of this study is to review the prevalence and severity of behavioural symptoms in KS., Methods: Relevant articles were identified by searching Medline (PubMed), PsycINFO, Embase and CINAHL up to 4 June 2014. Two reviewers independently selected the studies, extracted their baseline data and assessed methodological quality using a standardized checklist., Results: Fifteen studies fulfilled the inclusion criteria. A diversity of diagnoses was used indicating that KS and other alcohol-related cognitive disorders and terms were used interchangeably. None of the studies were primarily designed to estimate the prevalence or severity of behavioural symptoms in patients with KS. Most studies had serious methodological limitations. The reported prevalence estimates of behavioural symptoms in the included studies varied strongly. Most prevalent were depressive symptoms and disorders (2-50%, median 27%) and agitation and aggression (10-54%, median 27%). None of the reported, mean severity estimates met pathological thresholds. The highest severity estimates were found for apathy., Conclusions: Good quality studies on behavioural symptoms in patients with KS are lacking. Observational research designed to provide reliable estimates of the prevalence and severity of behavioural symptoms in patients with KS is needed. This could improve understanding and managing these symptoms and help care staff to better support the needs of this specific patient group. Copyright © 2016 John Wiley & Sons, Ltd., (Copyright © 2016 John Wiley & Sons, Ltd.)

Objective: The aim of this review was to provide a systematic overview including a quality assessment of studies about oral health and orofacial pain in older people with dementia, compared to older people without dementia., Methods: A systematic literature search was performed in PubMed, CINAHL, and the Cochrane Library. The following search terms were used: dementia and oral health or stomatognathic disease. The quality assessment of the included articles was performed using the Newcastle-Ottawa Scale (NOS)., Results: The search yielded 527 articles, of which 37 were included for the quality assessment and quantitative overview. The median NOS score of the included studies was 5, and the mean was 4.9 (SD 2.2). The heterogeneity between the studies was considered too large to perform a meta-analysis. An equivalent prevalence of orofacial pain, number of teeth present, decayed missing filled teeth index, edentulousness percentage, and denture use was found for both groups. However, the presence of caries and retained roots was higher in older people with dementia than in those without., Conclusions: Older people with dementia have worse oral health, with more retained roots and coronal and root caries, when compared to older people without dementia. Little research focused on orofacial pain in older people with dementia., Clinical Relevance: The current state of oral health in older people with dementia could be improved with oral care education of caretakers and regular professional dental care., Competing Interests: Compliance with ethical standardsConflict of interestThe authors declare that they have no conflict of interest.FundingThe work was supported by Alzheimer Nederland, Amstelring, Fonds NutsOhra, Roomsch Catholijk Oude Armen Kantoor (RCOAK), Stichting Beroepsopleiding Huisartsen (SBOH), and Stichting Henriëtte Hofje.Ethical approvalThis article does not contain any studies with human participants or animals performed by any of the authors.Informed consentFor this type of study, formal consent is not required.

Background: The interRAI-Home Care (interRAI-HC) instrument is commonly used in routine care to assess care and service needs, resource utilisation and health outcomes of community dwelling home care clients. Potentially, the interRAI-HC can also be used to calculate societal costs in economic evaluations. The purpose of this study was to assess the convergent validity of the interRAI-HC instrument in comparison with the RUD Lite instrument for the calculation of societal costs among care-dependent community dwelling older adults., Methods: A within-subject design was used. Participants were 65 years and older and received professional community care in five countries. The RUD Lite was administered by trained (research) nurses or self-reports within 4 weeks after the interRAI-HC assessment. Agreement between the interRAI-HC and RUD Lite estimates was assessed using Spearman's correlation coefficients. We hypothesised that there was strong correlation (Spearman's ρ > 0.5) between resource utilisation estimates, costs of care estimates and total societal cost estimates derived from both instruments., Results: Strong correlation was found between RUD Lite and interRAI-HC resource utilisation assessments for eight out of ten resource utilisation items. Total societal costs according to the RUD Lite were statistically significantly lower than according to the interRAI-HC (mean difference €-804, 95 % CI -1340; -269). The correlation between the instruments for total societal costs and all six cost categories was strong., Conclusions: The interRAI-HC has good convergent validity as compared with the RUD-Lite instrument to estimate societal cost of resource utilisation in community dwelling older adults. Since interRAI-HC assessments are part of routine care in many community care organisations and countries already, this finding may increase the feasibility of performing economic evaluations among community dwelling older adults.

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).

Background: Care relationships are crucial in tailoring the end-of-life care of a person with intellectual disabilities (ID) to their needs. Yet, almost all studies on end-of-life care for people with ID have been conducted among caregivers. The views of people with ID about care relationships at the end of life have not been a specific focus of research., Aim: To explore relevant dimensions of the care relationships in end-of-life care from the perspectives of people with mild ID in the Netherlands., Design: Group interviews were conducted using nominal group technique. Interviews were inductively analysed by two researchers., Setting/participants: Seven groups participated (33 people). Inclusion criteria were as follows: having mild ID, being able to decide about participation and give informed consent, and not receiving end-of-life care. All groups were interviewed twice., Results: Two dimensions of care relationships were found: (1) 'Ascertain, record and honour wishes' of the ill person. Adequately dealing with care wishes, 'last wishes' and funeral wishes was of central importance: 'it's about their life'. We found an emphasis on control that seemed to reflect the participants' experience that respecting autonomy does not always happen. (2) 'Being there': Ill people need people who are there for him or her, practically, as well as emotionally, socially and spiritually. Participants placed specific emphasis on providing positive experiences., Conclusion: The views of people with mild ID highlight the high demands which end-of-life care imposes on relational qualities of caregivers. This study shows the added value and potential of involving people with ID in studies on end-of-life care., (© The Author(s) 2016.)

Background: There is growing awareness that the subjective experience of people with dementia is important for understanding behavior and improving quality of life. This paper reviews and reflects on the currently available theories on subjective experience in dementia and it explores the possibility of a knowledge gap on the influence of neurological deficits on experience in late stage dementia., Methods: A literature review on current commonly used theories on experience in dementia was supplemented with a systematic review in PubMed and Psychinfo. For the systematic review, the terms used were Perception and Dementia and Behavior; and Awareness and Dementia and Long term care., Results: Current models emphasize the psychosocial factors that influence subjective experience, but the consequences of neurological deficits are not elaborated upon. The systematic literature search on the neuropsychological functioning in dementia resulted in 631 papers, of which 94 were selected for review. The current knowledge is limited to the early stages of Alzheimer's disease. Next to memory impairments, perception of the direct environment, interpretation of the environment, and inhibition of own responses to the environment seem to be altered in people with dementia., Conclusions: Without knowledge on how perception, interpretation and the ability for response control are altered, the behavior of people with dementia can easily be misinterpreted. Research into neuropsychological functioning of people in more severe stages and different forms of dementia is needed to be able to develop a model that is truly biopsychosocial. The proposed model can be used in such research as a starting point for developing tests and theories.

Background: The rising life expectancy in the developed world leads to an increase in the number of older patients and the complexity of their complaints in general practice. Although interventions and support for general practitioners are available, implementation lags. Knowledge on what determines a complex older patient, the problems of which general practitioners encounter and the situations they actually need support for, is necessary for better implementation., Methods: To provide support to general practitioners in their struggle with complex older patients, the aim of this research was to disentangle the concept of the complex older patient in general practice. A qualitative approach was used consisting of 15 semi-structured interviews with general practitioners. The general practitioner was asked to prepare a case of a complex older patient out of their own practice that could be discussed during the interview. Transcripts of the interview were analysed using inductive thematic analysis., Results: Analysis of the interviews resulted in twelve themes that could be categorised into five factors that contribute to the complexity of cases of older patients. The five factors are: not being in charge, different views on necessary care, encountering the boundaries of medicine, limits to providing social care, ill-equipped., Conclusion: The factors that were found imply that a better organisational structure for elderly care and consulting elderly care physicians could support general practitioners in providing care for older complex patients. Furthermore, understanding the current concept of patient autonomy seems unjustified in cases of complex older patients.

Objective: The objective of the study was to evaluate the cost-effectiveness of implementing the Grip on Challenging Behaviour care programme (GRIP) on dementia special care units in comparison with usual care., Methods: A stepped wedge design was used. Challenging behaviour and quality of life were measured using the Cohen Mansfield Agitation Inventory (CMAI) and the QUALIDEM. Quality-adjusted life years (QALYs) were calculated using the EuroQol-5D. Psychoactive medication use (range 0-5 per measurement) and sick leave were registered. Costs included medication, time spent on challenging behaviour and education. Costs and effects were analysed using linear multilevel regression. Incremental cost-effectiveness ratios were calculated. Statistical uncertainty was estimated using bootstrapping., Results: Seventeen dementia special care units participated. GRIP led to improvement on the QUALIDEM subscale social relations (1.6; 95% CI 0.18 to 3.4) and on the use of psychoactive medication (-0.73; 95% CI -1.1 to -0.46) and to a decrease in QALYs (-0.02; 95% CI -0.06 to -0.003). No significant effects on CMAI, sick leave and other QUALIDEM subscales were found. The intervention was not cost-effective in comparison with usual care with regard to CMAI score, QALYs and sick leave. The willingness to pay should be 320€/point improvement on the QUALIDEM subscale social relations and 370€/psychoactive medication less to reach a 0.95 probability of cost-effectiveness., Conclusion: It depends on how much society is willing to pay whether GRIP can be considered cost-effective. Because the appropriateness of the current methods for analysing cost-effectiveness in this specific population is uncertain, the positive effects on behaviour, medication and job satisfactions should also be taken in account in the decision making., (Copyright © 2015 John Wiley & Sons, Ltd.)

Objectives: To describe observations of suffering in patients with dementia from the diagnosis of pneumonia until cure or death., Design: Prospective observational study between January 2012 and May 2014., Setting: Dutch nursing homes (32)., Participants: Nursing home patients with dementia and pneumonia (n = 193)., Measurements: Independent observers performed observations of patients with dementia scheduled 13 times within the 15 days following diagnosis of pneumonia; twice daily in the first 2 days- to observe discomfort (Discomfort Scale-Dementia of Alzheimer Type; range 0-27), comfort (End Of Life in Dementia-Comfort Assessment in Dying; range 14-42), pain (Pain Assessment in Advanced Dementia; range 0-10), and dyspnea (Respiratory Distress Observation Scale; range 0-16)., Results: Observational data were obtained for 208 cases of pneumonia in 193 patients. In 71.2% of cases, patients received 1 or more treatments to relieve symptoms such as antipyretics, opioids, or oxygen; 89.4% received antibiotics. Discomfort was highest 1 day after diagnosis [mean Discomfort Scale-Dementia of Alzheimer Type score 8.1 (standard deviation, SD 5.8)], then declined, and stabilized around day 10 [mean 4.5 (SD 4.1)], or increased in the days preceding death. Observed pain and dyspnea followed a comparable pattern. Discomfort patterns did not differ much between cases treated with and without antibiotics., Conclusions: Pneumonia in patients with dementia involved elevated levels of suffering during 10 days following diagnosis and in the days preceding death. Overall observed discomfort was low compared with prior Dutch studies, and the number of treatments to relieve symptoms was higher. Future studies should examine whether symptoms of pneumonia can be relieved even more, and what treatments are the most effective., (Copyright © 2016 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Background: People with dementia may benefit from palliative care which specifically addresses the needs of patients and families affected by this life-limiting disease. On behalf of the European Association for Palliative Care (EAPC), we recently performed a Delphi study to define domains for palliative care in dementia and to provide recommendations for optimal care. An international panel of experts in palliative care, dementia care or both, achieved consensus on almost all domains and recommendations, but the domain concerning the applicability of palliative care to dementia required revision., Methods: To examine in detail, the opinions of the international panel of 64 experts around the applicability of palliative care, we explored feedback they provided in the Delphi process. To examine which experts found it less important or less applicable, ordinal regression analyses related characteristics of the panelists to ratings of overall importance of the applicability domain, and to agreement with the domain's four recommendations., Results: Some experts expressed concerns about bringing up end-of-life issues prematurely and about relabeling dementia care as palliative care. Multivariable analyses with the two outcomes of importance and agreement with applicability indicated that younger or less experienced experts and those whose expertise was predominantly in dementia care found palliative care in dementia less important and less applicable., Conclusions: Benefits of palliative care in dementia are acknowledged by experts worldwide, but there is some controversy around its early introduction. Further studies should weigh concerns expressed around care receiving a "palliative" label versus the benefits of applying palliative care early.

Background: Numerous studies have reported on pain in dementia. It has been hypothesized that pain perception differs between dementia subtypes, and therefore, the prevalence of pain differs between dementia subtypes. However, there remains a paucity of evidence on the differences in the prevalence of pain in different dementia subtypes. This review aimed to determine the prevalence of pain for the major dementia subtypes: Alzheimer's disease (AD), vascular dementia (VaD), frontotemporal dementia (FTD) and dementia with Lewy bodies (DLB)., Summary: We found 10 studies that met our inclusion criteria. Most of these studies reported on AD; studies reporting the prevalence of pain in people with DLB were scarce, and for FTD, we found no studies. The sample-weighted prevalence of pain could only be calculated for AD, VaD and mixed dementia: AD 45.8% (95% confidence interval, CI: 33.4-58.5%), VaD 56.2% (95% CI: 47.7-64.4%) and mixed dementia 53.9% (95% CI: 37.4-70.1%)., Key Messages: Studies investigating the prevalence of pain in dementia subtypes were scarce; however, we found a high prevalence of pain in dementia without significant differences between the dementia subtypes. More studies are required to draw firm conclusions on the differences in the prevalence of pain between dementia subtypes., (© 2016 S. Karger AG, Basel.)

Objective: To describe changes in the health service delivery process experienced by professionals, patients and informal caregivers during implementation of a national programme to improve quality of care of geriatric rehabilitation by improving integration of health service delivery processes., Study Setting: Sixteen skilled nursing facilities., Study Design: Prospective study, comparing three consecutive cohorts., Data Collection: Professionals (elderly care physicians, physiotherapists and nursing staff) rated four domains of health service delivery at admission and at discharge of 1075 patients. In addition, these patients [median age 79 (Interquartile range 71-85) years, 63% females] and their informal caregivers rated their experiences on these domains 4 weeks after discharge., Principal Findings: During the three consecutive cohorts, professionals reported improvement on the domain team cooperation, including assessment for intensive treatment and information transfer among professionals. Fewer improvements were reported within the domains alignment with patients' needs, care coordination and care quality. Between the cohorts, according to patients (n = 521) and informal caregivers (n = 319) there were no changes in the four domains of health service delivery., Conclusion: This national programme resulted in small improvements in team cooperation as reported by the professionals. No effects were found on patients' and informal caregivers' perceptions of health service delivery.

Objective: The aim of this study was to describe the process of advance care planning (ACP) and to explore factors related to the timing and content of ACP in nursing home patients with dementia, as perceived by family, physicians, and nurses., Design: A qualitative descriptive study., Methods: A total of 65 in-depth qualitative interviews were held with families, on-staff elderly care physicians, and nurses of 26 patients with dementia who died in the Dutch End Of Life in Dementia (DEOLD) study. Interviews were coded and analyzed to find themes., Results: Family, nurses, and physicians of all patients indicated they had multiple contact moments during nursing home stay in which care goals and treatment decisions were discussed. Nearly all interviewees indicated that physicians took the initiative for these ACP discussions. Care goals discussed and established during nursing home stay and the terminology to describe care goals varied between facilities. Regardless of care goals and other factors, cardiopulmonary resuscitation (CPR) and hospitalization were always discussed in advance with family and commonly resulted in a do-not-resuscitate (DNR) and a do-not-hospitalize (DNH) order. The timing of care planning discussions about other specific treatments or conditions and the content of treatment decisions varied. The factors that emerged from the interviews as related to ACP were general strategies that guided physicians in initiating ACP discussions, patient's condition, wishes expressed by patient or family, family's willingness, family involvement, continuity of communication, consensus with or within family, and general nursing home policy. Two influential underlying strategies guided physicians in initiating ACP discussions: (1) wait for a reason to initiate discussions, such as a change in health condition and (2) take initiative to discuss possible treatments (actively, including describing scenarios)., Conclusions: ACP is a multifactorial process, which may lean on professional caregivers' guidance. The most acute decisions are covered in advance, but a responsive as well as a proactive style is seen with other treatment decisions. Further research is needed to increase understanding of whether and how the physicians' strategies affect care processes and outcomes., (Copyright © 2015 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Several systematic reviews have shown that additional exercise therapy has a positive effect on functional outcome after stroke. However, there is an urgent need for resource-efficient methods to augment rehabilitation services without increasing health care costs. Asking informal caregivers to do exercises with their loved ones, combined with e-health services may be a cost-effective method to promote early supported discharge with increased functional outcome. The primary aim of the CARE4STROKE study is to evaluate the effects and cost-effectiveness of a caregiver-mediated exercises program combined with e-health services after stroke in terms of self-reported mobility and length of stay., Methods: An observer-blinded randomized controlled trial, in which 66 stroke-patients admitted to a hospital stroke unit, rehabilitation center or nursing home are randomly assigned to either 8 weeks of the CARE4STROKE program in addition to usual care (i.e., experimental group) or 8 weeks of usual care alone (i.e., control group). The CARE4STROKE program is compiled in consultation with a trained physical therapist. A tablet computer is used to present video-based exercises for gait and gait-related activities in which a caregiver acts as an exercise coach. Primary outcomes are the mobility domain of the Stroke Impact Scale and length of stay. Secondary outcomes are the other domains of the Stroke Impact Scale, motor impairment, strength, walking ability, balance, mobility, (Extended) Activities of Daily Living, psychosocial functioning, self-efficacy, fatigue, health-related quality of life of the patient as well as the experienced strain, psychosocial functioning and quality of life of the caregiver. An economic evaluation will be conducted from the societal and health care perspective., Discussion: The main aspects of the CARE4STROKE program are 1) increasing intensity of training by doing exercises with a caregiver in addition to usual care and 2) e-health support. We hypothesize this program leads to better functional outcome and early supported discharge, resulting in reduced costs., Trial Registration: The study is registered in the Dutch trial register as NTR4300, registered 2 December 2013.

Objective: Pain is a frequent long-term consequence of stroke, but its relation to emotional and social well-being is poorly studied in stroke populations. We aimed to identify the prevalence of substantial pain among institutionalized stroke patients and to explore its relation to emotional distress (ED) and low social engagement (SE)., Methods: In a cross-sectional design, we collected data of 274 chronic stroke patients in Dutch nursing homes. Observation lists were filled out in structured interviews with qualified nurse assistants who knew the residents well. Pain and SE were measured with the Resident Assessment Instrument for Long-term Care Facilities, and ED was measured with the Neuropsychiatric Inventory Questionnaire (NPIQ)., Results: Substantial pain was present in 28% of the residents, mostly located in the affected body side (68%). Multilevel regression analyses revealed that this pain was independently related to a 60% increase in NPIQ score (β 3.18 [1.84-4.53]) and to clinically relevant symptoms of delusions (odds ratio [OR] 8.45 [1.82-39.05]), agitation/aggression (OR 3.82 [1.76-8.29]), depression (OR 3.49 [1.75-6.98]), and anxiety (OR 2.32 [1.08-4.97]). Substantial pain was associated with low SE when adjusted for clinical covariates (OR 4.25 [1.72-10.53]), but only in residents with no/mild or severe cognitive impairment. This relation disappeared when additionally corrected for NPIQ score (OR 1.95 [0.71-5.39])., Conclusions: Pain is a serious and multidimensional problem among institutionalized stroke patients. It is related to increased ED, which in turn can be a pathway to low SE as an indicator of social vulnerability. Future research should reveal how pain management in nursing homes can be tailored to the needs of this patient group., (Copyright © 2014 John Wiley & Sons, Ltd.)

Objectives: Physician treatment orders (PTOs) prevent burdensome unnecessary medical treatment of frail nursing home patients. The aim was to determine the prevalence of PTOs and time duration between nursing home admittance and PTO completion., Design: Population-based, retrospective cohort study., Setting: Nursing homes across the Netherlands., Data Collection: Digital medical records of patients who subsequently were submitted to 14 Dutch nursing homes across The Netherlands were studied between 2010 and 2013. The prevalence's of do-resuscitate, do-not-resuscitate, life-sustaining, and palliative care PTOs and the time intervals between nursing home admittance and documentation of PTOs were measured. Information regarding demographic patient characteristics, type of nursing home ward, and mention of a discussion of PTOs with the patient or caregivers was obtained., Results: Eighty-two percent of the nursing home patients received a PTO regarding resuscitation, life-sustaining, or palliative care treatment. Twenty-four percent of the patients received a do-resuscitation PTO, 55% received a do-not-resuscitate PTO, 44% a life-sustaining PTO, and 16% a palliative care PTO. The median duration between nursing home admittance and documentation of the first PTO was 1 day. Most nursing home patients had PTOs within 1 week after admittance., Conclusion: A minority (18%) of Dutch nursing home patients has no documented PTOs during their nursing home stay, which could have negative effects on end-of-life care of nursing home residents., (Copyright © 2015 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Professionals and relatives increasingly have to deal with people with intellectual disabilities (ID) who are in need of end-of-life care. This is a specific type of care that may require a different approach to the focus on participation that currently characterizes the care for people with ID. This paper describes the shifts in care approaches and attitudes that relatives and professionals perceive as the death of a person with ID approaches, as well as the values underlying these shifts., Methods: A qualitative design was used to reconstruct the cases of twelve recently deceased people with ID. Relatives and professionals who were closest to the person at the end of their life were interviewed. Interviews were transcribed verbatim and data were analyzed inductively, using elements of thematic analysis., Results: Five shifts were found: 1) adapting to a new strategy of comforting care, taking over tasks and symptom relief, 2) interweaving of emotional and professional involvement, 3) stronger reliance on the joint interpretation of signals expressing distress and pain, 4) magnified feeling of responsibility in medical decisions, 5) intensified caring relationship between 'two families': relatives and care staff. Six relational values were behind these shifts: 'being there' for the person with ID, 'being responsive' to the person's needs, 'reflection' on their own emotions and caring relationships, 'attentiveness' to the ID person's wishes and expressions of distress, 'responsibility' for taking joint decisions in the best interests of the person, and 'openness to cooperation and sharing' the care with others., Conclusions: End-of-life care for people with ID involves curtailing expectations of participation and skill acquirement, and an increase in teamwork featuring intensified comforting care, symptom management and medical decision making. Three caring relationships need to be fostered: the relationship with the person with ID, relationships among professionals and the relationship between relatives and professionals. ID care services should invest particularly in the emotional support and expertise level of care staff, and in the collaboration between relatives and professionals.

Objectives: To evaluate the effect of tailored interventions on the appropriateness of decisions to prescribe or withhold antibiotics, antibiotic use and guideline-adherent antibiotic selection in nursing homes (NHs)., Methods: We conducted a quasi-experimental study in 10 NHs in the Netherlands. A participatory action research (PAR) approach was applied, with local stakeholders in charge of selecting tailored interventions based on opportunities for improved antibiotic prescribing that they derived from provided baseline data. An algorithm was used to evaluate the appropriateness of prescribing decisions, based on infections recorded by physicians. Effects of the interventions on the appropriateness of prescribing decisions were analysed with a multilevel logistic regression model. Pharmacy data were used to calculate differences in antibiotic use and recorded infections were used to calculate differences in guideline-adherent antibiotic selection., Results: The appropriateness of 1059 prescribing decisions was assessed. Adjusting for pre-test differences in the proportion of appropriate prescribing decisions (intervention, 82%; control, 70%), post-test appropriateness did not differ between groups (crude: P = 0.26; adjusted for covariates: P = 0.35). We observed more appropriate prescribing decisions at the start of data collection and before receiving feedback on prescribing behaviour. No changes in antibiotic use or guideline-adherent antibiotic selection were observed in intervention NHs., Conclusions: The PAR approach, or the way PAR was applied in the study, was not effective in improving antibiotic prescribing behaviour. The study findings suggest that drawing prescribers' attention to prescribing behaviour and monitoring activities, and increasing use of diagnostic resources may be promising interventions to improve antibiotic prescribing in NHs., (© The Author 2015. Published by Oxford University Press on behalf of the British Society for Antimicrobial Chemotherapy. All rights reserved. For Permissions, please e-mail: journals.permissions@oup.com.)

Background: While the demand for doctors specialised in the medical care of elderly patients is increasing, the interest among medical students for a career in geriatrics is lagging behind., Methods: To get an overview of the different factors reported in the literature that affect the (low) interest among medical students for a career in geriatrics, a systematic literature search was conducted using PubMed, Embase, PsycINFO, and ERIC. Quality assessment criteria were applied., Results: Twenty studies met the criteria and were included in the review. In relation to the nature of the work, the preference of medical students is young patients, and acute somatic diseases that can be cured. The complexity of the geriatric patient deters students from choosing this specialty. Exposure by means of pre-clinical and particularly clinical education increases interest. The lack of status and the financial aspects have a negative influence on interest., Conclusion: Exposure to geriatrics by means of education is necessary. The challenge in geriatric education is to show the rewarding aspects of the specialty.

Background: Many people with dementia die in a nursing home. A comfort care goal may be beneficial. Little research has examined the relationship between care goals and outcome., Aim: To investigate whether family satisfaction with end-of-life care and quality of dying is associated with whether or not dementia patients have a comfort goal shortly after admission., Design and Setting: Prospective data collection from 28 long-term care facilities (the Dutch End of Life in Dementia study). We included 148 patients who died after prospective follow-up. Main outcomes were family satisfaction (End-of-Life in Dementia-Satisfaction with Care scale; range: 10-40) and quality of dying (End-of-Life in Dementia-Comfort Assessment in Dying; range: 14-42). We performed generalized estimating equations regression analyses to analyze whether these outcomes are associated with a comfort goal established shortly after admission compared with another or no care goal as reported by the physician., Results: Families of patients were more satisfied with end-of-life care when a comfort goal was established shortly after admission. We found this pattern only for patients who died within 6 months of admission (adjusted b: 4.5; confidence interval: 2.8, 6.3 vs -1.2; confidence interval: -3.0, 0.6 for longer stay). For quality of dying, no such association was found., Conclusion: We found that family satisfaction with care is related to a comfort care goal shortly after admission, but quality of dying did not. Establishing a comfort goal at an early stage may be important to the family. Advance care planning interventions should be studied for their effects on patient and family outcome., (© The Author(s) 2015.)

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., (Copyright © 2015 AMDA - The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Surveillance technology such as tag and tracking systems and video surveillance could increase the freedom of movement and consequently autonomy of clients in long-term residential care settings, but is also perceived as an intrusion on autonomy including privacy., Objective: To explore how clients in residential care experience surveillance technology in order to assess how surveillance technology might influence autonomy., Setting: Two long-term residential care facilities: a nursing home for people with dementia and a care facility for people with intellectual disabilities., Methods: Ethnographic field study., Ethical Considerations: The boards representing clients and relatives/proxies of the clients were informed of the study and gave their written consent. The clients' assent was sought through a special information leaflet. At any time clients and/or proxy were given the option to withdraw from the study. The research protocol was also reviewed by a medical ethics committee., Findings: Our findings show a pattern of two themes: (1) coping with new spaces which entailed clients: wandering around, getting lost, being triggered, and retreating to new spaces and (2) resisting the surveillance technology measure because clients feel stigmatized, missed the company, and do not like being "watched.", Conclusion: Client experiences of surveillance technology appear to entail a certain ambivalence. This is in part due to the variety in surveillance technology devices, with each device bringing its own connotations and experiences. But it also lies in the devices' presupposition of an ideal user, which is at odds with the actual user who is inherently vulnerable. Surveillance technology can contribute to the autonomy of clients in long-term care, but only if it is set in a truly person-centered approach., (© The Author(s) 2014.)

Objective: This study aimed to develop a practice guideline for a structured and consensus-based approach to relieve symptoms of pneumonia in patients with dementia in nursing homes., Methods: A five-round Delphi study involving a panel consisting of 24 experts was conducted. An initial version of the practice guideline was developed with leading representatives of Dutch University Medical Centers with a department for elderly care medicine, based on existing guidelines for palliative care. The experts evaluated the initial version, after which we identified topics that reflected the main divergences. The experts rated their agreement with statements that addressed the main divergences on a 5-point Likert scale. Consensus was determined according to pre-defined criteria. The practice guideline was then revised according to the final decisions made by the project group and the representatives., Results: The response rate for the expert panel was 67%. Main divergences included the applicability of guidelines for palliative care to patients with dementia and pneumonia in long-term care and the appropriateness of specific pharmacological treatment of dyspnea and coughing. Moderate consensus was reached for 80% of the statements. Major revisions included adding pharmacological treatment for coughing and recommending opioid rotation in the case of opioid-induced delirium. Two areas of divergent opinion remained: the usefulness of oxygen administration and treatment of rattling breath. The project group made the final decision in these areas., Conclusions: We developed a mostly consensus-based practice guideline for patients with dementia and pneumonia and mapped controversial issues for future investigation., (Copyright © 2014 John Wiley & Sons, Ltd.)

Background: Decision-making in the acute phase after a severe stroke is complex and may involve life-and-death decisions. Apart from the medical condition and prognosis, quality of life and the deliberation of palliative care should be part of the decision-making process. Relatives play an important role by informing physicians about the patient's values and preferences. However, little is known about how the patients' relatives experience the decision-making process., Aim: To elicit the perspective of relatives of severe stroke patients with regard to the decision-making process in the acute phase in order to understand how they participate in treatment decisions., Design: An exploratory qualitative interview approach guided by the principles of grounded theory., Settings/participants: Relatives of severe stroke patients (n = 15) were interviewed about their experiences in the decision-making process in the acute phase., Results: Four categories reflecting relatives' experiences were identified: (1) making decisions under time pressure, (2) the feeling of 'who am I' to decide, (3) reluctance in saying 'let her die' and (4) coping with unexpected changes. Following the treatment proposal of the physician was found to be the prevailing tendency of relatives in the decision-making process., Conclusion: A better understanding of the latent world of experiences of relatives that influence the decision-making process may help physicians and other health-care providers to better involve relatives in decision-making and enhance the care, including palliative care, for patients with severe stroke in line with their values and preferences. Communication between physician and relatives seems vital in this process., (© The Author(s) 2015.)

Background: Pain is a common problem in people with dementia, however the exact prevalence of pain in dementia subtypes, e.g. Alzheimer's Disease (AD), Vascular Dementia (VaD), Frontotemporal Dementia (FTD) and dementia with Lewy Bodies (DLB), is unknown, as is the relation between pain and the different subtypes of dementia. In this study, the prevalence of pain in people with dementia will be investigated per dementia subtype and the relationship between the various subtypes of dementia and the presence of specific types of pain (i.e. musculoskeletal pain, neuropathic pain and orofacial pain) will be examined. Secondly, associations between various types of pain, cognitive functioning, neuropsychiatric symptoms and quality of life in people with dementia will be examined. A third purpose is to study the value of the assessment of autonomic responses in assessing pain in people with dementia. Finally, the effect of feedback to the attending physician on the presence of pain, based on examination by investigators with backgrounds in neuropsychology, geriatric dentistry and elderly care medicine, will be evaluated., Methods/design: A cross-sectional, partially longitudinal observational study in 400 participants with dementia, aged 60 years and older. Participants will be recruited from an outpatient memory clinic and dementia special care units. All participants will be examined by an elderly care medicine trainee, a dentist with experience in geriatric dentistry, and a neuropsychologist. The primary outcome is presence of pain. Secondary outcomes will include oral health, autonomic responses to pain stimulus, vital sensibility and gnostic sensibility, musculoskeletal examination, cognitive functioning, neuropsychiatric symptoms, and quality of life., Discussion: This study will help to enhance our knowledge regarding the prevalence of different types of pain in different dementia subtypes i.e. AD, VaD, FTD and DLB. This study also aims to contribute to a better understanding of oral health status in people with dementia, the use of autonomic responses in the assessment of pain in people with dementia and the relationships between pain and cognitive symptoms, neuropsychiatric symptoms and quality of life in people with various dementia subtypes and in different stages of the disease.

Objective: To investigate the appropriateness of decisions to prescribe or withhold antibiotics for nursing home (NH) residents with infections of the urinary tract (UTI), respiratory tract (RTI), and skin (SI)., Design: Prospective study., Setting: Ten NHs in the central-west region of the Netherlands., Participants: Physicians providing medical care to NH residents., Measurements: Physicians completed a registration form for any suspected infection over an 8-month period, including patient characteristics, signs and symptoms, and treatment decisions. An algorithm, developed by an expert panel and based on national and international guidelines, was used to evaluate treatment decisions for appropriateness of initiating or withholding antibiotics., Results: Appropriateness of 598 treatment decisions was assessed. Overall, 76% were appropriate, with cases that were prescribed antibiotics judged less frequently "appropriate" (74%) compared with cases in which antibiotics were withheld (90%) (P = .003). Decisions around UTI were least often appropriate (68%, compared with 87% for RTI and 94% for SI [P < .001]). The most common situations in which antibiotic prescribing was considered inappropriate were those indicative of asymptomatic bacteriuria or viral RTI., Conclusion: Although the rate of appropriate antibiotic prescribing in Dutch NHs is relatively high compared with previous studies in other countries, our results suggest that antibiotic consumption can be reduced by improving appropriateness of treatment decisions, especially for UTI. Given the current antibiotic resistance developments in long-term care facilities, interventions reducing antibiotic use for asymptomatic bacteriuria and viral RTI are warranted., (Copyright © 2015 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Background: The aim of this article was to investigate the beliefs and considerations of professionals concerning an appropriate environment for end-of-life care for people with intellectual disabilities (ID)., Method: A survey questionnaire was composed based on a scan of relevant literature and the results of group interviews with professionals, family members and people with ID. The questionnaire focused on the respondents' general beliefs about an appropriate environment for end-of-life care and their specific considerations regarding the place of care of the last client for whom the respondent provided end-of-life care. The questionnaire was sent to 294 care staff members recruited from a nationally representative panel of nurses and social workers, 273 ID physicians recruited from the members list of the Dutch professional association of ID physicians, and 1000 general practitioners (GPs) recruited from a nationally representative sample from a national registration of GPs., Results: The overall response was 46%. Professionals predominantly believe that all efforts should be made to ensure that a person with ID receives end-of-life care in their own home environment, and that 24/7 care is available. Respondents indicated that most of the clients (79%) who had last received end-of-life care from an ID care service were able to stay in their own home environment. Decisions to keep the client in their own home environment were primarily based on the familiarity of the environment and the expertise of the team in end-of-life care. Insufficient expertise and a lack of adequate equipment were the main considerations in decisions to move a client. Despite the belief of care staff in particular that the wishes of the person with ID should always be leading when deciding on the place of end-of-life care, only 8% of the care staff and ID physicians explicitly mentioned that the client's wishes were taken into account in actual decision-making., Conclusions: Professionals agree that end-of-life care for people with ID should preferably take place in the client's home environment, even when nursing expertise, experience and adequate equipment are not (yet) in place. Nonetheless, a lack of expertise in end-of-life care is the foremost consideration in decisions to move a client. If ID care services want to promote end-of-life care in the client's own home, we recommend formulating a policy on how to realise end-of-life care in the client's own home environment and provide sufficient training and support for staff. To involve people with ID as much as possible, we recommend that professionals integrate more collaborative principles in decision-making about the place of end-of-life care., (© 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

Objectives: Apathy is a frequent neuropsychiatric consequence of stroke. In the under-researched population of institutionalized stroke patients, we aimed to explore the prevalence of apathy, its clinical correlates, and the relation to the amount of stimulating activities in the nursing home (NH)., Design: A cross-sectional, observational study., Setting: Dutch NHs., Participants: 274 chronic stroke patients., Measurements: Data were collected through observation lists that were filled out in structured interviews with qualified nurse assistants who knew the residents well. The lists comprised the NH-version of the Apathy Evaluation Scale (AES10), the Barthel Index, the Neuropsychiatric Inventory Questionnaire, and sections of the Resident Assessment Instrument for Long-Term Care Facilities. Attending physicians and therapists provided additional information., Results: Apathy (AES10 score ≥30) was present in 28% of residents. Multilevel regression analyses revealed that this apathy was independently related to (moderate, severe) cognitive impairment (odds ratio [OR] 11.30 [95% confidence interval (CI): 4.96-25.74], OR 5.54 [95% CI: 2.48-12.40]), very severe ADL-dependency (OR 12.10 [95% CI: 1.35-108.66]), and being >12 hours per day in bed (OR 2.10 [95% CI: 1.07-4.13]). It was not related to depressive mood symptoms (OR 1.75 [95% CI: 0.91-3.37]). Only in residents aged less than 80 years were a higher amount of activities independently related to a lower AES10 score (-0.70 [95% CI: -1.18 to -0.20] points per four extra activities in a 4-week period)., Conclusions: Apathy is prevalent in largely one-quarter of institutionalized stroke patients, and that is most strongly related to cognitive impairment in this explorative study. We discuss the need for research on the relation with distinct dimensions of depression and fatigue as partly overlapping constructs, and on (individualized) stimulating activities as a possible intervention method., (Copyright © 2015 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.)

Background: Infections frequently occur in patients with dementia and antibiotics are often prescribed, but may also be withheld., Objectives: The aim of this systematic review is to provide a systematic overview of the prevalence of antibiotic use, and factors associated with prescribing antibiotics in patients with dementia., Data Sources: A systematic search of MEDLINE, EMBASE, PSYCINFO, CINAHL, and the Cochrane library databases until February 13, 2014 was performed, using both controlled terms and free-text terms., Results: Thirty-seven articles were included. The point prevalence of antibiotic use in patients with dementia ranged from 3.3 to 16.6%. The period prevalence ranged from 4.4 to 88% overall, and from 23.5 to 94% in variable time frames before death; the median use was 52% (median period 14 days) and 48% (median period 22 days), respectively. Most patients with lower respiratory tract infections or urinary tract infections (77-91%) received antibiotic treatment. Factors associated with antibiotic use related to patients, families, physicians, and the healthcare context. More severe dementia and a poor prognosis were associated with less antibiotic use in various countries. Associations with aspiration and illness severity differed by country., Conclusions and Implications: Antibiotic use in patients with dementia is substantial, and probably highly associated with the particular healthcare context. Future studies may report antibiotic use by infection type and stage of dementia, and compare cross-nationally.

Background: Caring for people with dementia in dementia special care units is a demanding job. Challenging behaviour is one of the factors influencing the job satisfaction and burnout of care staff. A care programme for the challenging behaviour of nursing home residents with dementia might, next to diminishing the challenging behaviour of residents, improve job satisfaction and reduce the care staff's feelings of burnout., Objectives: To determine the effects of a care programme for the challenging behaviour of nursing home residents with dementia on the burnout, job satisfaction and job demands of care staff., Design: The care programme was implemented according to a stepped wedge design in which care units were randomly divided over five groups with different time points of starting with implementation., Setting: 17 Dutch dementia special care units., Participants: Care staff members of the 17 units., Intervention: The care programme consists of an education package and of various structured assessment tools that guide professionals through the multidisciplinary detection, analysis, treatment and evaluation of treatment of challenging behaviour., Methods: Burnout, job satisfaction and job demands were measured before implementation, halfway through the implementation process and after all the care units had implemented the care programme. Burnout was measured with the Dutch version of the Maslach burnout inventory (UBOS-C, three subscales); job satisfaction and job demands were measured with subscales of the Leiden Quality of Work Questionnaire. Mixed model analyses were used to determine effects. Care staff could not be blinded for the intervention., Results: Of the 1441 questionnaires, 645 were returned (response 45%, 318 control measurements, 327 intervention measurements) by 380 unique care staff members. Significant effects were found on job satisfaction (0.93, 95% CI 0.48-1.38). On the other outcomes, no significant changes in the scores were found., Conclusion: Positive effects of using the Grip on Challenging behaviour care programme were found on job satisfaction, without an increase in job demands., (Copyright © 2014 Elsevier Ltd. All rights reserved.)

Background: Spiritual caregiving is part of palliative care and may contribute to well being at the end of life. However, it is a neglected area in the care and treatment of patients with dementia. We aimed to examine predictors of the provision of spiritual end-of-life care in dementia as perceived by physicians coordinating the care., Methods: We used data of the Dutch End of Life in Dementia study (DEOLD; 2007-2011), in which data were collected prospectively in 28 Dutch long-term care facilities. We enrolled newly admitted residents with dementia who died during the course of data collection, their families, and physicians. The outcome of Generalized Estimating Equations (GEE) regression analyses was whether spiritual care was provided shortly before death as perceived by the on-staff elderly care physician who was responsible for end-of-life care (last sacraments or rites or other spiritual care provided by a spiritual counselor or staff). Potential predictors were indicators of high-quality, person-centered, and palliative care, demographics, and some other factors supported by the literature. Resident-level potential predictors such as satisfaction with the physician's communication were measured 8 weeks after admission (baseline, by families and physicians), physician-level factors such as the physician's religious background midway through the study, and facility-level factors such as a palliative care unit applied throughout data collection., Results: According to the physicians, spiritual end-of-life care was provided shortly before death to 20.8% (43/207) of the residents. Independent predictors of spiritual end-of-life care were: families' satisfaction with physicians' communication at baseline (OR 1.6, CI 1.0; 2.5 per point on 0-3 scale), and faith or spirituality very important to resident whether (OR 19, CI 5.6; 63) or not (OR 15, CI 5.1; 47) of importance to the physician. Further, female family caregiving was an independent predictor (OR 2.7, CI 1.1; 6.6)., Conclusions: Palliative care indicators were not predictive of spiritual end-of-life care; palliative care in dementia may need better defining and implementation in practice. Physician-family communication upon admission may be important to optimize spiritual caregiving at the end of life.

Background: Insight into factors that influence antibiotic prescribing is crucial when developing interventions aimed at a more rational use of antibiotics. We examined factors that influence antibiotic prescribing in long-term care facilities, and present a conceptual model that integrates these factors., Methods: Semi-structured qualitative interviews were conducted with physicians (n = 13) and nursing staff (n = 13) in five nursing homes and two residential care homes in the central-west region of the Netherlands. An iterative analysis was applied to interviews with physicians to identify and categorize factors that influence antibiotic prescribing, and to integrate these into a conceptual model. This conceptual model was triangulated with the perspectives of nursing staff., Results: The analysis resulted in the identification of six categories of factors that can influence the antibiotic prescribing decision: the clinical situation, advance care plans, utilization of diagnostic resources, physicians' perceived risks, influence of others, and influence of the environment. Each category comprises several factors that may influence the decision to prescribe or not prescribe antibiotics directly (e.g. pressure of patients' family leading to antibiotic prescribing) or indirectly via influence on other factors (e.g. unfamiliarity with patients resulting in a higher physician perceived risk of non-treatment, in turn resulting in a higher tendency to prescribe antibiotics)., Conclusions: Our interview study shows that several non-rational factors may affect antibiotic prescribing decision making in long-term care facilities, suggesting opportunities to reduce inappropriate antibiotic use. We developed a conceptual model that integrates the identified categories of influencing factors and shows the relationships between those categories. This model may be used as a practical tool in long-term care facilities to identify local factors potentially leading to inappropriate prescribing, and to subsequently intervene at the level of those factors to promote appropriate antibiotic prescribing.

Background: Many people with dementia die in long-term care settings. These patients may benefit from a palliative care goal, focused on comfort. Admission may be a good time to revisit or develop care plans., Objective: To describe care goals in nursing home patients with dementia and factors associated with establishing a comfort care goal., Design: We used generalized estimating equation regression analyses for baseline analyses and multinomial logistic regression analyses for longitudinal analyses., Setting: Prospective data collection in 28 Dutch facilities, mostly nursing homes (2007-2010; Dutch End of Life in Dementia study, DEOLD)., Results: Eight weeks after admission (baseline), 56.7% of 326 patients had a comfort care goal. At death, 89.5% had a comfort care goal. Adjusted for illness severity, patients with a baseline comfort care goal were more likely to have a religious affiliation, to be less competent to make decisions, and to have a short survival prediction. Their families were less likely to prefer life-prolongation and more likely to be satisfied with family-physician communication. Compared with patients with a comfort care goal established later during their stay, patients with a baseline comfort care goal also more frequently had a more highly educated family member., Conclusions: Initially, over half of the patients had a care goal focused on comfort, increasing to the large majority of the patients at death. Optimizing patient-family-physician communication upon admission may support the early establishing of a comfort care goal. Patient condition and family views play a role, and physicians should be aware that religious affiliation and education may also affect the (timing of) setting a comfort care goal.

Objective: This paper explores the personal beliefs and specific considerations of professionals regarding decisions about potentially burdensome medical interventions in the end-of-life care for people with intellectual disabilities (ID)., Methods: A survey questionnaire covering decision making about potentially burdensome medical interventions was sent to nationally representative samples of 294 ID care staff-members, 273 ID physicians and 1000 GPs., Results: Professionals predominantly believed that considerations about quality of life are most important. Quality of life and wellbeing were also frequently considered in both decisions to start/continue an intervention and decisions to forgo/withdraw an intervention. Seventy percent believed that people with ID should always be informed about interventions, and 61% would respect a refusal by the person. The family's wishes were explicitly considered more often than the wishes of the person with ID., Conclusion: Although respondents agree that the quality of life is highly important, the wishes of people with ID (especially of those with severe/profound ID) were often not considered in decisions about potentially burdensome medical interventions., Practice Implications: To enhance the active involvement of people with ID in decision making we recommend that professionals integrate collaborative principles in decision making and make use of pictorial and easy reading resources., (Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.)

Background: The Grip on Challenging Behavior care program for managing challenging behavior was implemented in the dementia special care units of 17 Dutch nursing homes. A process evaluation of the implementation of the care program was performed to determine the quality of the implementation and the lessons to be learned for future implementation., Methods: The care program was implemented according to a stepped wedge design. First-order data (data on recruitment, reach, relevance and feasibility) were used to determine the validity of the study, and second-order data (intervention quality and the barriers and facilitators for implementing the care program) were used to describe the implementation process. Two structured questionnaires were administered to care staff and key stakeholders and semi-structured interviews were held in the units., Results: University affiliated and non-affiliated nursing homes from different parts of the Netherlands participated. The resident participation rate was over 95% and the participation rate for the training sessions was 82%. Respondents considered the care program relevant and feasible. The degree of implementation was not optimal. The barriers and facilitators in implementing the care program could be divided into three categories: organizational aspects, culture on the unit and aspects of the care program itself., Conclusions: The recruitment, reach, relevance and feasibility are sufficient to allow for analysis and generalization of the effects of the care program, but the degree of implementation should be taken into account in further analysis. Future projects that involve implementation should consider the specific features of the organization and the cultural orientation of the unit to better adapt to specific needs., Trial Registration: The Netherlands National Trial register under number NTR2141 registered on 11 December 2009. Randomization took place in November 2010, and the first intervention group started using the intervention in February 2011.

It is challenging to change physicians' antimicrobial prescribing behaviour. Although antimicrobial prescribing is determined by contextual (e.g. a lack of guidelines), cultural (e.g. peer practice) and behavioural (e.g. perceived decision making autonomy) factors, most antimicrobial stewardship programmes fail to consider these factors in their approach. This may lead to suboptimal intervention effectiveness. We present a new approach in antimicrobial stewardship programme development that addresses relevant determinants of antimicrobial prescribing: participatory action research (PAR). PAR is a collaborative process that aims to bring about change in social situations by producing practical knowledge that is useful in local practice. It requires substantial involvement of relevant stakeholders to address determinants of the studied behaviour and to facilitate empowerment. PAR is well suited for complex problems in multidisciplinary settings as it adapts to local needs, delivering a tailored approach to improving local practice. We describe how PAR can be applied to antimicrobial stewardship, and describe the PAR design of two ongoing multicentre antimicrobial stewardship projects, in the acute care setting and the long-term care setting, respectively., (© The Author 2014. Published by Oxford University Press on behalf of the British Society for Antimicrobial Chemotherapy. All rights reserved. For Permissions, please e-mail: journals.permissions@oup.com.)

Context: Burdensome symptoms present frequently in dementia at the end of life, but we know little about the symptom control provided, such as type and dosage of medication., Objectives: To investigate symptom prevalence and prescribed treatment, explore associations with quality of life (QOL) in the last week of life, and examine symptom prevalence by cause of death of nursing home residents with dementia., Methods: Within two weeks after death, physicians completed questionnaires about symptoms and treatment in the last week for 330 nursing home residents with dementia in the Dutch End of Life in Dementia study (2007-2011). We used linear regression to assess associations with QOL, measured by the Quality of Life in Late-Stage Dementia scale. Causes of death were abstracted from death certificates., Results: Pain was the most common symptom (52%), followed by agitation (35%) and shortness of breath (35%). Pain and shortness of breath were mostly treated with opioids and agitation mainly with anxiolytics. At the day of death, 77% received opioids, with a median of 90 mg/24 hours (oral equivalents), and 21% received palliative sedation. Pain and agitation were associated with a lower QOL. Death from respiratory infection was associated with the largest symptom burden., Conclusion: Symptoms are common in dementia at the end of life, despite the large majority of residents receiving opioids. Dosages may be suboptimal with regard to weighing of effects and side effects. Future research may employ observation on a day-to-day basis to better assess effectiveness of symptom control and possible side effects., (Copyright © 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

Background: The aim of this article was to describe how caregivers and relatives shape respect for autonomy in the end-of-life care for people with intellectual disabilities (ID) and to discuss to what extent this corresponds with a relational concept of autonomy, such as described in care ethics., Method: This study consisted of a qualitative design in which the cases of 12 recently deceased people with ID were reconstructed by interviewing the caregivers and relatives who were closest to the person at the end of their life. A cyclic process of data collection and analysis was used. Interviews were transcribed verbatim and data were analysed inductively., Results: Respect for autonomy in the end-of-life care of people with ID was mainly reflected in helping the person with ID familiarise with three transitions: new information on the diagnosis and prognosis, changing care needs and wishes, and important decisions that were at stake. In respecting autonomy, relatives and caregivers encountered several challenges. These concerned ascertaining information needs, communicating about illness and death, inexperience in end-of-life care, eliciting current and hidden last wishes, the dependence of people with ID and conflicting wishes. Several qualities were important for respecting autonomy: attention to information needs, connecting, recognising end-of-life care needs, giving space to show wishes and preferences, and discussing dilemmas., Conclusions: If caregivers and relatives embrace autonomy as a relational construct, attained through an open, active and reflective attitude, and have more access to knowledge about communication and how to identify end-of-life care needs, this could lead to improved respect for the ID persons' autonomy at the end of life. We discuss the view that a relational concept of autonomy is useful for describing respect for autonomy in end-of-life care for people with ID, but that more reflection and openness is needed to sufficiently employ relationships and regard autonomy as a product of joint work., (© 2013 The Authors. Journal of Intellectual Disability Research © 2013 John Wiley & Sons Ltd, MENCAP & IASSIDD.)

Background: Nurses and social workers caring for people with intellectual disabilities are increasingly confronted with clients in need of end-of-life care. Previous studies, however, suggest that professionals in intellectual disability care services lack knowledge and experience concerning end-of-life care. Moreover, the proportion of nurses within the staff of intellectual disability services has declined in recent years, while the proportion of social workers has increased, which may have consequences for the quality of end-of-life care., Objectives: To gain insight into the quality of end-of-life care, past vocational training, training needs and expert consultation opportunities of nurses and social workers working in intellectual disability care services., Design: Survey questionnaire study conducted in the Netherlands., Settings: Intellectual disability care services., Participants: The study sample was recruited from an existing nationally representative research panel of care professionals. In 2011, all 181 nurses and social workers in the research panel who worked in intellectual disability care services were sent our survey questionnaire., Methods: Postal survey addressing education, views and needs regarding end-of-life care., Results: The response was 71.8%. Respondents positively evaluated the quality of end-of-life care. However, most respondents felt inadequately trained in end-of-life care issues. Nurses had received more training in end-of-life care and had fewer training needs than social workers. Respondents wished for additional training, especially in supporting clients in dealing with the impending death and farewell process. Half of the respondents were unaware of the availability of external consultation facilities., Conclusions: This study shows that although nurses and social workers positively appraise the quality of end-of-life care for people with intellectual disabilities, the majority feel inadequately trained to provide good end-of-life care. As the number of people with intellectual disability in need of end-of-life care grows, organizations need to offer additional relevant training and must give information about the availability of external expert consultation for nurses and social workers., (© 2013.)