[Organ donation after euthanasia in patients with a mental disorder: extra caution required]. / Orgaandonatie na euthanasie bij patiënten met een psychische stoornis.

A relative high number of cases of organ donation after euthanasia (ODE) is performed in patients with a mental disorder. We feel there are morally relevant differences between people who receive euthanasia on grounds of somatic illness and those who receive it on grounds of a mental disorder. More research is needed before it can be assumed that patients with a mental disorder who have their requests for euthanasia granted may also be eligible for ODE without further testing. Until then, as a matter of prudence, a request for ODE from a patient with a mental disorder should also be reviewed by a psychiatrist.

Effects of the DICE Method to Improve Timely Recognition and Treatment of Neuropsychiatric Symptoms in Early Alzheimer's Disease at the Memory Clinic: The BEAT-IT Study.

BACKGROUND: Neuropsychiatric symptoms (NPS) are highly prevalent in Alzheimer's disease (AD) and are associated with negative outcomes. However, NPS are currently underrecognized at the memory clinic and non-pharmacological interventions are scarcely implemented. OBJECTIVE: To evaluate the effectiveness of the Describe, Investigate, Create, Evaluate (DICE) method™ to improve the care for NPS in AD at the memory clinic. METHODS: We enrolled sixty community-dwelling people with mild cognitive impairment or AD dementia and NPS across six Dutch memory clinics with their caregivers. The first wave underwent care as usual (n = 36) and the second wave underwent the DICE method (n = 24). Outcomes were quality of life (QoL), caregiver burden, NPS severity, NPS-related distress, competence managing NPS, and psychotropic drug use. Reliable change index was calculated to identify responders to the intervention. A cost-effectiveness analysis was performed and semi-structured interviews with a subsample of the intervention group (n = 12). RESULTS: The DICE method did not improve any outcomes over time compared to care as usual. Half of the participants of the intervention group (52%) were identified as responders and showed more NPS and NPS-related distress at baseline compared to non-responders. Interviews revealed substantial heterogeneity among participants regarding NPS-related distress, caregiver burden, and availability of social support. The intervention did not lead to significant gains in quality-adjusted life years and well-being years nor clear savings in health care and societal costs. CONCLUSION: The DICE method showed no benefits at group-level, but individuals with high levels of NPS and NPS-related distress may benefit from this intervention.

Neuropsychological assessment in the multicultural memory clinic: Development and feasibility of the TULIPA battery.

Neuropsychological assessment of culturally diverse populations is hindered by barriers in language, culture, education, and a lack of suitable tests. Furthermore, individuals from diverse backgrounds are often unfamiliar with being cognitively tested. The aim of this study was to develop a new neuropsychological test battery and study its feasibility in multicultural memory clinics.Composition of the TULIPA battery (Towards a Universal Language: Intervention and Psychodiagnostic Assessment) entailed a literature review and consultation with experts and individuals from diverse backgrounds. Feasibility was investigated by examining administration and completion rates and the frequency of factors complicating neuropsychological assessment in 345 patients from 37 countries visiting four multicultural memory clinics in the Netherlands.The test battery included existing tests such as the Cross-Cultural Dementia screening (CCD), Rowland Universal Dementia Assessment Scale (RUDAS), tests from the European Cross-Cultural Neuropsychological Test Battery, and newly developed tests. Completion rates for the test battery were generally high (82%-100%), except for CCD Dots subtest B (58%). Although tests of the "core" TULIPA battery were administered often (median: 6 of 7, IQR: 5-7), supplementary tests were administered less frequently (median: 1 of 9; IQR: 0-3). The number of administered tests correlated with disease severity (RUDAS, ρ=.33, adjusted p < .001), but not with other patient characteristics. Complicating factors were observed frequently, e.g. suboptimal effort (29%-50%), fatigue (29%), depression (37%-57%).The TULIPA test battery is a promising new battery to assess culturally diverse populations in a feasible way, provided that complicating factors are taken into account.Supplemental data for this article is available online at https://doi.org/10.1080/13854046.2022.2043447 .

The recognition and management of neuropsychiatric symptoms in early Alzheimer's disease: a qualitative study among Dutch memory clinic physicians.

BACKGROUND: Timely recognition and treatment of neuropsychiatric symptoms (NPS) in Alzheimer's disease (AD) dementia may improve quality of life, reduce caregiver burden, and delay disease progression. However, management of NPS in early AD dementia remains challenging. To date, little is known about the specific challenges for memory clinic-based physicians. The aims of this qualitative study were to obtain insights regarding the recognition and treatment of NPS in AD dementia in the memory clinic, to identify challenges experienced by physicians while managing NPS, and to examine the attitudes of memory clinic physicians on the role of the memory clinic in the care for NPS in early AD dementia. METHODS: Semi-structured interviews were conducted with 13 physicians working at a memory clinic in the Netherlands (n = 7 neurologist, n = 6 geriatrician, 46% female). The data were analyzed by two independent researchers using thematic analysis. RESULTS: We observed large variation among Dutch memory clinic physicians regarding care practices, expertise, and attitudes on the role of the memory clinic considering NPS in AD dementia. The most prominent challenges that memory clinic physicians experienced while managing NPS included that the outpatient setting complicates the recognition and treatment of NPS, a lack of experience, knowledge, and/or resources to adequately apply non-pharmacological interventions, and a lack of consensus among physicians on the role of the memory clinic in NPS recognition and management. CONCLUSIONS: We identified challenges that need to be addressed to improve the early recognition and adequate management of NPS in AD dementia at the memory clinic.

The Multidimensional Prognostic Index Predicts Mortality in Older Outpatients with Cognitive Decline.

Since the heterogeneity of the growing group of older outpatients with cognitive decline, it is challenging to evaluate survival rates in clinical shared decision making. The primary outcome was to determine whether the Multidimensional Prognostic Index (MPI) predicts mortality, whilst assessing the MPI distribution was considered secondary. This retrospective chart review included 311 outpatients aged ≥65 years and diagnosed with dementia or mild cognitive impairment (MCI). The MPI includes several domains of the comprehensive geriatric assessment (CGA). All characteristics and data to calculate the risk score and mortality data were extracted from administrative information in the database of the Alzheimer's Center and medical records. The study population (mean age 76.8 years, men = 51.4%) was divided as follows: 34.1% belonged to MPI category 1, 52.1% to MPI category 2 and 13.8% to MPI category 3. Patients with dementia have a higher mean MPI risk score than patients with MCI (0.47 vs. 0.32; p < 0.001). The HRs and corresponding 95% CIs for mortality in patients in MPI categories 2 and 3 were 1.67 (0.81−3.45) and 3.80 (1.56−9.24) compared with MPI category 1, respectively. This study shows that the MPI predicts mortality in outpatients with cognitive decline.

Diversity in Alzheimer's disease drug trials: The importance of eligibility criteria.

INTRODUCTION: To generalize safety and efficacy findings, it is essential that diverse populations are well represented in Alzheimer's disease (AD) drug trials. In this review, we aimed to investigate participant diversity in disease-modifying AD trials over time, and the frequencies of participant eligibility criteria. METHODS: A systematic review was performed using Medline, Embase, the Cochrane Library, and Clinicaltrials.gov, identifying 2247 records. RESULTS: In the 101 included AD trials, participants were predominantly White (median percentage: 94.7%, interquartile range: 81.0-96.7%); and this percentage showed no significant increase or decrease over time (2001-2019). Eligibility criteria such as exclusion of persons with psychiatric illness (78.2%), cardiovascular disease (71.3%) and cerebrovascular disease (68.3%), obligated caregiver attendance (80.2%), and specific Mini-Mental State Examination scores (90.1%; no significant increase/decrease over time) may have led to a disproportionate exclusion of ethnoracially diverse individuals. DISCUSSION: Ethnoracially diverse participants continue to be underrepresented in AD clinical trials. Several recommendations are provided to broaden eligibility criteria.

COVID outcome prediction in the emergency department (COPE): using retrospective Dutch hospital data to develop simple and valid models for predicting mortality and need for intensive care unit admission in patients who present at the emergency department with suspected COVID-19.

OBJECTIVES: Develop simple and valid models for predicting mortality and need for intensive care unit (ICU) admission in patients who present at the emergency department (ED) with suspected COVID-19. DESIGN: Retrospective. SETTING: Secondary care in four large Dutch hospitals. PARTICIPANTS: Patients who presented at the ED and were admitted to hospital with suspected COVID-19. We used 5831 first-wave patients who presented between March and August 2020 for model development and 3252 second-wave patients who presented between September and December 2020 for model validation. OUTCOME MEASURES: We developed separate logistic regression models for in-hospital death and for need for ICU admission, both within 28 days after hospital admission. Based on prior literature, we considered quickly and objectively obtainable patient characteristics, vital parameters and blood test values as predictors. We assessed model performance by the area under the receiver operating characteristic curve (AUC) and by calibration plots. RESULTS: Of 5831 first-wave patients, 629 (10.8%) died within 28 days after admission. ICU admission was fully recorded for 2633 first-wave patients in 2 hospitals, with 214 (8.1%) ICU admissions within 28 days. A simple model-COVID outcome prediction in the emergency department (COPE)-with age, respiratory rate, C reactive protein, lactate dehydrogenase, albumin and urea captured most of the ability to predict death. COPE was well calibrated and showed good discrimination for mortality in second-wave patients (AUC in four hospitals: 0.82 (95% CI 0.78 to 0.86); 0.82 (95% CI 0.74 to 0.90); 0.79 (95% CI 0.70 to 0.88); 0.83 (95% CI 0.79 to 0.86)). COPE was also able to identify patients at high risk of needing ICU admission in second-wave patients (AUC in two hospitals: 0.84 (95% CI 0.78 to 0.90); 0.81 (95% CI 0.66 to 0.95)). CONCLUSIONS: COPE is a simple tool that is well able to predict mortality and need for ICU admission in patients who present to the ED with suspected COVID-19 and may help patients and doctors in decision making.

Advance care planning and end-of-life care in patients with an implantable cardioverter defibrillator: The perspective of relatives.

BACKGROUND: Little is known about the last phase of life of patients with implantable cardioverter defibrillators and the practice of advance care planning in this population. AIM: To describe the last phase of life and advance care planning process of patients with an implantable cardioverter defibrillator, and to assess relatives' satisfaction with treatment and care. DESIGN: Mixed-methods study, including a survey and focus group study. SETTING/PARTICIPANTS: A survey among 170 relatives (response rate 59%) reporting about 154 deceased patients, and 5 subsequent focus groups with 23 relatives. RESULTS: Relatives reported that 38% of patients had a conversation with a healthcare professional about implantable cardioverter defibrillator deactivation. Patients' and relatives' lack of knowledge about device functioning and the perceived lack of time of healthcare professionals were frequently mentioned barriers to advance care planning. Twenty-four percent of patients experienced a shock in the last month of life, which were, according to relatives, distressing for 74% of patients and 73% of relatives. Forty-two to sixty-one percent of relatives reported to be satisfied with different aspects of end-of-life care, such as the way in which wishes of the patient were respected. Quality of death was scored higher for patients with a deactivated device than those with an active device (6.74 vs 5.67 on a 10-point scale, p = 0.012). CONCLUSIONS: Implantable cardioverter defibrillator deactivation was discussed with a minority of patients. Device shocks were reported to be distressing to patients and relatives. Relatives of patients with a deactivated device reported a higher quality of death compared to relatives of patients with an active device.

Consultation Recording: What Is the Added Value for Patients Aged 50 Years and Over? A Systematic Review.

This systematic review aimed to provide medical professionals with insight into beneficial and harmful effects of consultation recording for patients aged 50 years and over. This insight could enable medical professionals to decide on whether or not to promote consultation recording in their practice. The systematic literature search was performed in six databases; additional relevant articles were sought using the snowball method. Studies were included that investigated the value of consultation recording for patients aged 50 years and over. The selected studies were analyzed on affective cognitive outcomes, behavioral outcomes, and health outcomes. Twenty-five studies of both qualitative and quantitative design were included. Consultation recordings mainly improved patient satisfaction, recall, fulfillment of information needs, and decision-making. Both positive and negative effects were reported on anxiety. The recordings did not distinctly affect functional outcomes or quality of life. In conclusion, consultation recording positively influenced patients' affective cognitive and behavioral outcomes, and the negative effects of consultation recording were minor. Because of the positive effects of consultation replay, we recommend that doctors promote consultation recording among their patients of 50 years and over. However, more studies are necessary among older patients because this patient population is underrepresented in the current literature.

Implantable cardioverter defibrillator deactivation and advance care planning: a focus group study.

OBJECTIVE: Implantable cardioverter defibrillators can treat life-threatening arrhythmias, but may negatively influence the last phase of life if not deactivated. Advance care planning conversations can prepare patients for future decision-making about implantable cardioverter defibrillator deactivation. This study aimed at gaining insight in the experiences of patients with advance care planning conversations about implantable cardioverter defibrillator deactivation. METHODS: In this qualitative study, we held five focus groups with 41 patients in total. Focus groups were audio-recorded and transcribed. Transcripts were analysed thematically, using the constant comparative method, whereby themes emerging from the data are compared with previously emerged themes. RESULTS: Most patients could imagine deciding to have their implantable cardioverter defibrillator deactivated, for instance because the benefits of an active device no longer outweigh the harm of unwanted shocks, when having another life-limiting illness, or when relatives would think this would be in their best interest. Some patients expressed a need for advance care planning conversations with a healthcare professional about deactivation, but few had had these. Others did not, saying they solely focused on living. Some patients were hesitant to record their preferences about deactivation in advance care directives, because they were unsure whether their current preferences would reflect future preferences. CONCLUSIONS: Although patients expressed a need for more information, advance care planning conversations about implantable cardioverter defibrillator deactivation seemed to be uncommon. Deactivation should be more frequently addressed by healthcare professionals, tailored to the disease stage of the patient and readiness to discuss this topic.

Challenges and needs of informal caregivers in elderly care: Qualitative research in four European countries, the TRACE project.

BACKGROUND: Providing informal care may affects caregivers' life in different ways. Determining the needs of caregivers and supporting them can improve both the quality of life of the caregivers, as well as the elderly they take care of. OBJECTIVE: To explore the experiences and needs of the informal caregivers in four countries. DESIGN: Qualitative research method was used in the study. METHODS: The qualitative data was collected through focus groups and individual interviews between December 2016-May 2017. In all countries interviews were conducted in the mother language of the informants. Informants of the qualitative research were adult people who take primary care of an individual with chronic diseases, aged 65 years or older. Data were collected from 72 informal caregivers from four European countries. Inductive content analysis was performed. RESULTS: Informal caregivers identified 2 themes, 5 subthemes, 19 categories and 7 subtcategories. The themes highlighted two major issues: informal caregiver's challenges and needs related to the management of care of elderly and caregivers' personal needs. CONCLUSION: The important and charming results of the present study are, difficulties of managing caregiver's own life, and coping with emotions are common in four countries. Identifying challenges and needs of informal caregivers enable healthcare professionals to develop care strategies and plan interventions focused to support and help to reduce the burden of care for elderly with chronic diseases.

Assessment of Visual Association Memory in Low-Educated, Non-Western Immigrants with the Modified Visual Association Test.

BACKGROUND: Neuropsychological tests are influenced by culture, language, level of education, and literacy, but there are few cognitive tests of which the applicability in ethnic minority populations has been studied. OBJECTIVES: The aim of this study was to assess the reliability and validity of the Visual Association Test (VAT), a test of visual association memory, in a non-Western, low-educated memory clinic population. Additionally, a modified version of the VAT using colored photographs instead of line drawings was studied (mVAT). METHOD: Both the original VAT and the mVAT were administered to non-Western immigrants (n = 73) from 2 multicultural memory clinics in Rotterdam, The Netherlands, and a control sample of non-demented Turkish elderly (n = 14) with low education levels (32 and 29% illiterate, respectively). RESULTS: Both the VAT and the mVAT were able to discriminate persons with and without dementia (area under the curve: VAT, 0.77-0.88; mVAT, 0.85-0.95). The mVAT had more homogeneous item difficulty levels than the VAT. Administration of parallel versions of the VAT and the mVAT within the same person revealed higher scores on the mVAT (Z = -3.35, p = 0.001). CONCLUSIONS: The mVAT is a reliable and valid measure of memory in non-Western immigrants. Clinicians and researchers should be aware that the memory performance of immigrants may be systematically underestimated when using tests with black-and-white line drawings, such as the original VAT.

Is training for informal caregivers and their older persons helpful? A systematic review.

BACKGROUND: The steady increase in the number of people suffering from chronic diseases and increasing life expectancy raises new demands on health care. At the same time, the need for informal caregivers is increasing. This study aims to perform a systematic review of the methodologies used to identify effect of different types of training on informal caregivers and their older persons. METHODS: MEDLINE (PubMed), CINAHL and Ovid were searched from December 2016 and April 2017. The following keywords were used; "informal caregiver", "training" "elderly", older persons". Identified publications were screened by using the following inclusion criteria; systematic reviews, randomized controlled trials, prospective cohort and multicentre studies, English language full text journals, samples or interventions that included caregivers of older persons and published in last 10 years. RESULTS: Twenty four studies (12 randomised control trials, 8 intervention studies and 4 systematic reviews) were included. Most of the randomized controlled trials involved both caregivers and elderly. Pretests and post-tests were used in intervention studies (5 out of the 8 studies). ICT-based, psychosocial interventions on family caregivers' education program for caregivers were applied. Caregivers following a supportive educative learning had a significantly better quality of life. CONCLUSIONS: The findings of this systematic review suggest that support interventions for caregivers can be effective in reducing caregivers' stress, with a consequent improvement of the quality of care. However, results are based on relatively small studies, reporting somewhat controversial findings supporting the need to perform further research in this field.

Trends in time in the management of the implantable cardioverter defibrillator in the last phase of life: a retrospective study of medical records.

BACKGROUND: The implantable cardioverter defibrillator (ICD) might give unwanted shocks in the last month of life. Guidelines recommend deactivation of the ICD prior to death. AIMS: The aims of this study were to examine trends in time (2007-2016) in how and when decisions are made about ICD deactivation, and to examine patient- and disease-related factors which may have influenced these decisions. In addition, care and ICD shock frequency in the last month of life of ICD patients are described. METHODS: Medical records of a sample of deceased patients who had their ICD implanted in 1999-2015 in a Dutch university (n = 308) or general (n = 72) hospital were examined. RESULTS: Median age at death was 71 years, and 88% were male. ICD deactivation discussions increased from 6% for patients who had died between 2007 and 2009 to 35% for patients who had died between 2013 and 2016. ICD deactivation rates increased in these periods from 16% to 42%. Presence of do-not-resuscitate (DNR) orders increased from 9% to 46%. Palliative care consultations increased from 0% to 9%. When the ICD remained active, shocks were reported for 7% of patients in the last month of life. Predictors of ICD deactivation were the occurrence of ICD deactivation discussions after implantation (OR 69.30, CI 26.45-181.59), DNR order (OR 6.83, CI 4.19-11.12), do-not-intubate order (OR 6.41, CI 3.75-10.96), and palliative care consultations (OR 8.67, CI 2.76-27.21). CONCLUSION: ICD deactivation discussions and deactivation rates have increased since 2007. Nevertheless, ICDs remain active in the majority of patients at the end of life, some of whom experience shocks.

The incidence and impact of implantable cardioverter defibrillator shocks in the last phase of life: An integrated review.

BACKGROUND: Although the implantable cardioverter defibrillator is successful in terminating life threatening arrhythmias, it might give unwanted shocks in the last phase of life if not deactivated in a timely manner. AIMS: This integrated review aimed to provide an overview of studies reporting on implantable cardioverter defibrillator shock incidence and impact in the last phase of life. METHODS AND RESULTS: We systematically searched five electronic databases. Studies reporting on the incidence and/or impact of implantable cardioverter defibrillator shocks in the last month of life were included. Fifteen studies were included. Two American studies published in 1996 and 1998 reported on the incidence of shocks in patients who died non-suddenly: incidences were 24% and 33%, respectively, in the last 24 hours, and 7% and 14%, respectively, in the last hour of life. Six American studies and one Danish study published between 1991-1999 reported on patients dying suddenly: incidences were 41% and 68% in the last 24 hours and 22-66% in the last hour. Four American studies and two Swedish studies published between 2004-2015 did not distinguish the cause of death: incidences were 17-32% in the last month, 3-32% in the last 24 hours, and 8% and 31% in the last hour of life. Three American studies published between 2004-2011 reported that shocks in dying patients are painful and distressing for patients, and distressing for relatives and professional caregivers. CONCLUSION: If the implantable cardioverter defibrillator is not deactivated in a timely manner, a potentially significant proportion of implantable cardioverter defibrillator patients experience painful and distressing shocks in their last phase of life.

[Melanomas more serious in the elderly]. / Melanomen bij ouderen ernstiger.

Two patients, a 96-year-old woman and a 94-year-old man, were diagnosed with metastatic cutaneous melanoma. The first patient had undergone radical excision of the primary tumour 18 months before. The second patient presented with neurological symptoms caused by a metastatic melanoma; the primary tumour had recently been resected. Both patients died within three weeks of the diagnosis. Cutaneous melanomas have a high metastatic rate. Treatment options are limited for metastatic disease. The incidence of melanoma increases with age. Old age is an independent risk factor, which is also associated with a poor prognosis. Older patients more often present with more serious histological characteristics and more aggressive types of melanoma. The Breslow thickness is also higher in patients aged 65 or over. Nodular melanoma, lentigo maligna or acral lentiginous melanoma are observed more frequently in this group of patients. Moreover, elderly people more frequently present with liver or cerebral metastases. Early diagnosis improves the prognosis, also in the elderly.

High systolic and pulse pressure levels are associated with better cognitive performance in patients with probable Alzheimer's disease: a cross-sectional observational study in a geriatric outpatient population.

BACKGROUND: The prevalence of cardiovascular disease and Alzheimer's disease (AD) increases with age. A number of studies have demonstrated an association between AD and cardiovascular risk factors and disease. However, data are inconsistent. METHODS: Cross-sectional observational study in a geriatric outpatient population. Analysis of data from 327 patients diagnosed with probable AD in a geriatric outpatient clinic. Comparison of blood pressure levels, cardiovascular diagnoses, and Mini-Mental State Examination (MMSE) score between the patients. RESULTS: MMSE score decreased with age (beta = -0.25; 95% CI: -0.35 to 0.15), and a positive correlation was found with systolic blood pressure (beta = 0.03; 95% CI: 0.003-0.06), pulse pressure (beta = 0.05; 95% CI: 0.01-0.08) and hypertension (beta = 1.56; 95% CI: 0.05-3.07). An increase in cardiovascular disease load had a negative effect on cognitive performance. After adjustment for duration of dementia (data present for 216 patients), results were slightly changed. CONCLUSIONS: Higher systolic blood pressure and pulse pressure were associated with a better cognitive test performance. Patients with probable AD and 2 or more cardiovascular diagnoses had lower MMSE scores.