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Abstract Background The Dutch Euthanasia law permits euthanasia in patients with advanced dementia lacking decisional capacity based on advance euthanasia directives. Nevertheless, physicians encounter difficulties assessing the criteria for due care in such cases. This study explores the perspectives of legal experts on the fulfillment of these criteria and the potential for additional legal guidance to support physicians’ decision-making processes. Methods A qualitative study was conducted with legal experts. Two focus group sessions were conducted. The data analysis was conducted iteratively, with the data being interpreted using thematic content analysis and the framework method. Results Participants emphasize the importance of considering the patient’s current wishes and informing them about the limitations of advance euthanasia directives. While representatives and healthcare professionals can assist in interpreting wishes, the final decision regarding euthanasia rests with the physician. The participants also discuss the challenges posed by pre-recorded wishes due to changing preferences. Furthermore, they present different views on the value of life wishes of patients with advanced dementia. While some participants prioritize life wishes over advance euthanasia directives, others question whether such expressions still reflect their will. Participants find it essential to assess unbearable suffering in the context of the current situation. Participants acknowledge the necessity to interpret advance euthanasia directives but also current expressions and they entrust this interpretation to physicians, viewing them as the primary authority, despite consulting multiple sources. Conclusions The Dutch Euthanasia law’s due care criteria are open norms –which are open in substance and require further elaboration, mostly determined on a case-by-case basis to the field standards of the profession–, placing the responsibility on physicians to interpret advance euthanasia directives and patient expressions. Despite potential support from various sources of information, there is limited additional legal guidance available to assist physicians in making decisions.

IntroductionAlthough some adults with autism spectrum disorder (ASD) require intensive and specialized ASD treatment, there is little research on how these adults experience the recovery process. Recovery is defined as the significant improvement in general functioning compared to the situation prior to treatment.MethodsThis qualitative study describes the recovery process from the perspective of adults on the autism spectrum during intensive inpatient treatment. Semi-structured interviews (n = 15) were carried out and analyzed according to the principles of grounded theory.ResultsOur results indicate that, given the specific characteristics of autism, therapeutic interventions and goal-oriented work cannot be carried out successfully, and the recovery process cannot begin, if no good working relationship has been established, and if care is not organized in ways that a person on the autism spectrum finds clear and predictable.

Introduction: Care for people with vascular cognitive impairment (VCI), like vascular dementia or post-stroke cognitive impairment, is provided by various healthcare professionals. People with VCI present in different settings like (acute) neurology, rehabilitation and dementia care, all with their own guidelines and workflow. We explored experiences and perspectives of healthcare professionals on care provision, organization and collaboration regarding care for people with VCI. Methods: We performed a qualitative focus group study in regions across the Netherlands. Focus groups were divided in three types: (i) primary care, (ii) secondary care and (iii) mixed focus groups with healthcare professionals from both settings. We included forty healthcare professionals across seven focus groups, including medical specialists, elderly care physicians, general practitioners, nurses, paramedics and case managers in dementia care. Inclusion ended when we reached thematic saturation, meaning new data did not provide additional (sub-)themes. Focus groups were audiotaped and transcribed verbatim. Transcripts were iteratively coded, recoded, analyzed and grouped into themes according to the inductive thematic analysis method by Braun & Clarke. Results: Three themes were identified. An overarching theme was “Knowledge and awareness of VCI.” Participants stated that the general public as well as healthcare professionals had insufficient knowledge of VCI. They agreed that awareness of the condition was a prerequisite for adequate care for people with VCI. The second theme was “Specific care.” Participants noted a lack of differentiation in current VCI care, while specific recommendations are needed for typical symptoms and fluctuations in functioning. Participants also highlighted the need to unburden informal caregivers, who struggle with symptoms like apathy or uncertainty of the disease course, described by one participant as a “no man's land”. The third theme was “Integrated care.” Current care for VCI was perceived as highly fragmented: various professionals provided a specific part, but a central lead or coordinator was often lacking. Participants proposed an integrated and transmural VCI-network. Discussion: More specific and integrated care is needed to accommodate people with VCI and informal caregivers, combining expertise from dementia and rehabilitation settings. Knowledge and awareness of VCI should be improved by providing (psycho-)education to professionals and the public.

Introduction: Research is lacking regarding the effect of cerebral small vessel disease (CSVD) on different domains of functioning and their interrelations. Network analyses provides a holistic overview of interrelationships between different variables. Therefore, we applied network analysis on data of older people with varying levels of CSVD and their cognitive, physical, emotional and daily functioning. Methods: We included participants (n=807) from the Amsterdam Aging Cohort. Inclusions criteria were a memory clinic visit including (i) comprehensive geriatric assessment, (ii) brain imaging and (iii) neuropsychological evaluation.CSVD was operationalized as White Matter Hyperintensities (WMH), according to the Fazekas scale, dividing the sample in three levels: no/mild WMH (Fazekas 0/1), moderate WMH (Fazekas 2) and severe WMH (Fazekas 3)Domains of functioning were operationalized as follows. Physical functioning: gait speed and handgrip strength (HGS). Cognitive functioning: composite z-scores in the domains memory, language, attention/speed and executive functioning. Daily functioning: Katz ADL and the Lawton iADL. Emotional functioning: Geriatric Depression Scale-15, Apathy (GDS-3A) and Depression (GDS-12D) subscales. Health related Quality of Life (hrQoL): EQ5D-VAS. We ran a network (mixed graphical model) to assess the associations between the domains of functioning. We tested whether these associations were different for different levels of CSVD in a moderated network model. Multiple regression, corrected for sex, age and education level, was used to assess the difference in domains of functioning between CSVD levels. Results: In the network model, more depressive and apathy symptoms are associated with lower hrQoL. Lower physical & cognitive functioning are associated with worse daily functioning (Figure). The moderated network did not significantly differ between CSVD levels. Yet, our multiple regression analyses did show differences that WMH severity is related with worse physical functioning, worse daily functioning, lower hrQoL, more apathy symptoms and lower cognitive functioning in the attention and language domains (Table). Discussion: Domains of functioning are highly connected in this older population, while CSVD is associated with worse functioning in all domains. This implicates that cognitive and emotional changes prevalent in CSVD (apathy, reduced speed) co-occur with worse daily functioning and decreased quality of life, warranting a holistic approach in clinical care.

Evidence based medicine in de ouderengeneeskundige praktijk is een uitdaging. Met beperkt wetenschappelijk bewijs specifiek voor de doelgroep vraagt het van de specialist ouderengeneeskunde de nodige creativiteit. Hoe ga je hier mee om in de praktijk? Wat betekent dat voor de competenties die de specialist ouderengeneeskunde nodig heeft? En hoe kan je deze het beste ontwikkelen in de opleiding?

Om naasten van mensen met dementie te informeren over levenseindezorg is in 2005 een handreiking ontwikkeld in Canada. Een Nederlandse versie verscheen in 2011 na evaluatie en herziening. Ontwikkelingen in wetenschap en maatschappij vragen om een tweede herziening. Het doel van dit onderzoek was om de voorkeuren van gebruikers (naasten en zorgprofessionals) in kaart te brengen over de inhoud, uitstraling en vorm van de handreiking. Hiertoe creëerden wij naast de huidige handreiking (in boekvorm) een prototype website en app, en drie illustratie-opties. Eenentwintig naasten en negentien zorgprofessionals vulden een vragenlijst in over hun voorkeuren. Open vragen werden geanalyseerd met content analyse, gesloten vragen met een beschrijvende analyse. De deelnemers waardeerden de opbouw van vragen en antwoorden. Zij vonden de tekst te medisch georiënteerd en gaven aan behoefte te hebben aan meer inclusief taalgebruik en bredere informatie. De deelnemers vonden afbeeldingen van mensen geschikt voor de handreiking en prefereerden illustraties met minder focus op de medische context. Zij hadden de voorkeur voor een boekvorm en een website. Door inzicht in de voorkeuren van naasten en zorgprofessionals kan de handreiking bij de tweede herziening beter worden afgestemd op de gebruiker. De verwachting is dat deze afstemming bevorderend is voor het informeren van naasten over zorg rond het levenseinde.

Background: Post-diagnostic care for people with vascular cognitive impairment (VCI) typically involves multiple professions and disjointed care pathways not specifically designed to aid VCI needs. Objective: Exploring perspectives of healthcare professionals on post-diagnostic care for people with VCI. Methods: We conducted a qualitative focus group study. We used purposive sampling to include healthcare professionals in different compositions of primary and secondary care professionals per focus group. Thematic saturation was reached after seven focus groups. Transcripts were iteratively coded and analyzed using inductive thematic analysis. Results: Forty participants were included in seven focus groups (4–8 participants). Results showed knowledge and awareness of VCI as prerequisites for adequate post-diagnostic care, and for pre-diagnostic detection of people with VCI (theme 1). In light of perceived lack of differentiation between cognitive disorders, participants shared specific advice regarding post-diagnostic care for people with VCI and informal caregivers (theme 2). Participants thought current care for VCI was fragmented and recommended further integration of care and collaboration across settings (theme 3). Conclusions: People with VCI and their caregivers risk getting stuck in a "no man's land" between post-diagnostic care pathways; challenges lie in acknowledgement of VCI and associated symptoms, and alignment between healthcare professionals. Education about the symptoms and consequences of VCI, to healthcare professionals, people with VCI and caregivers, may increase awareness of VCI and thereby better target care. Specific attention for symptoms common in VCI could further tailor care and reduce caregiver burden. Integration could be enhanced by combining expertise of dementia and stroke/rehabilitation pathways. [ABSTRACT FROM AUTHOR]

Rumination and low self-esteem are associated with suicidality, and with autism spectrum disorders (ASD). However, rumination and self-esteem in relation to suicidality in adults with ASD have not been examined. This cross-sectional study (n = 75; 46 males and 29 females) investigates the relation of rumination and self-esteem to the absence/presence of suicidal ideation (SUIC+/-), history of attempted suicide (HAS), and severity of suicidality. Multivariate analysis of variance showed that self-esteem was significantly associated with SUIC+/-, whereas rumination was significantly associated with HAS. Multiple regression analysis showed that rumination and self-esteem were independently associated with severity of suicidality, but these lose their significant contribution, when statistically controlling for depression. The prevalence of suicidal ideation was 66.6%; gender was not a significant factor.

Understanding lone actor grievance-fueled violence remains a challenge. We believe that the concept of grievance provides an opportunity to add an engaged, first-person perspective to the assessment of lone actor extreme violence. We propose an enactivist philosophical approach that can help to understand the why and how of the pathway from grievance to violent extremism. Enactivism sees grievance as a dynamic, interpersonal, and context-sensitive construct that indicates how (potential) offenders make sense of the world they live in and how under certain circumstances it fuels violent behavior. Hence, grievance should not be understood as a given thing, but as an unfolding experience that involves sense-making through (regulation of one’s) interaction with the (social) environment. This (self-)relational and ecological understanding requires another approach than looking at demographic factors or life histories, only from an outsider’s perspective. Enactivism invites us to look at such risk factors as external indices of an ongoing process of active self-regulation and sense-making, and in some cases spiraling toward extreme violence. To understand the mindset of the offender we need to look more in depth at the processes that shape this mindset: why does this person, with this history, in this context, and at this point in time, proceed to use violence? The enactivist approach to the mind offers a complementary framework that may help us to understand the dynamics of grievance as a possible precursor to violent extremism. It also helps to appreciate why the relative unpredictability of the pathway toward lone actor extreme violence is not necessarily a sign of empirical weakness but a matter of principle due to the non-linearity of the processes involved. We end by summarizing how enactivism could contribute to the prevention of extremist violence and research and how it can help to avoid reinforcing stigmas and re-establishing a confirmation bias.

Background: Outcome assessment is essential to understand the impact and recovery of burns of the hand and tailor treatment. There is however, a large variety of measures and outcome assessment is often incomplete. The aim was therefore to initiate a set of outcome assessments for use in a clinical setting. Method: A concept set was drafted, based on the framework of the International Classification of Functioning, which distinguished two phases, three patient states and included both patient reported and clinical outcomes. Subsequently, potential assessments were allocated to the various outcomes. This concept was discussed during the European Burns Association congress in 2013 and revised. The revision was sent to 65 colleagues from 28 institutions, accompanied by a survey. Results: Eleven surveys were returned from 16 persons representing 9 institutions from 6 countries. Based on the feedback, final revisions were made. Points raised were time investment and translations of not all assessments already available. Conclusions: With multidisciplinary and international input, a multidimensional set of outcome assessments for burns of the hand has been established, covering almost all domains of functioning. This first step towards more uniform clinical evaluation, will contribute to knowledge on outcome and effectiveness of treatment of hand burns.

Introduction Conspiracy theories are popular during the COVID-19 pandemic. Conspiratorial thinking is characterised by the strong conviction that a certain situation that one sees as unjust is the result of a deliberate conspiracy of a group of people with bad intentions. Conspiratorial thinking appears to have many similarities with paranoid delusions. Objectives To explore the nature, consequences, and social-psychological dimensions of conspiratorial thinking, and describe similarities and differences with paranoid delusions. Methods Critically assessing relevant literature about conspiratorial thinking and paranoid delusions. Results Conspiratorial thinking meets epistemic, existential, and social needs. It provides clarity in uncertain times and connection with an in-group of like-minded people. Both conspiratorial thinking and paranoid delusions involve an unjust, persistent, and sometimes bizarre conviction. Unlike conspiracy theorists, people with a paranoid delusion are almost always the only target of the presumed conspiracy, and they usually stand alone in their conviction. Furthermore, conspiracy theories are not based as much on unusual experiences of their inner self, reality, or interpersonal contacts. Conclusions Conspirational thinking is common in uncertain circumstances. It gives grip, certainty, moral superiority and social support. Extreme conspirational thinking seems to fit current psychiatric definitions of paranoid delusions, but there are also important differences. To make a distinction with regard to conspiratorial thinking, deepening of conventional definitions of delusions is required. Instead of the strong focus on the erroneous content of delusions, more attention should be given to the underlying idiosyncratic, changed way of experiencing reality. Disclosure No significant relationships.

The study investigated whether EMDR is a feasible therapy for adults with ASD and a history of adverse events, and whether it is associated with reductions in symptoms of PTSD, psychological distress and autism. Participants received 6 to 8 weeks treatment as usual (TAU), followed by a maximum of 8 sessions EMDR added to TAU, and a follow-up of 6-8 weeks with TAU only. Results showed a significant reduction of symptoms of post-traumatic stress (IES-R: d = 1.16), psychological distress (BSI: d = 0.93) and autistic features (SRS-A: d = 0.39). Positive results were maintained at follow-up. The results suggest EMDR therapy to be a feasible and potentially effective treatment for individuals with ASD who suffer from the consequences of exposure to distressing events.

Background: As the assistive and resistive properties of water can facilitate the performance of exercise, aquatic exercise therapy might be a promising rehabilitation modality for burn patients. This study aimed to investigate the feasibility and acceptability of aquatic exercise therapy in adult burn patients with an indication for supervised exercise therapy. Methods: Eligible for this observational pilot study were all competent adult burn patients with an indication for supervised exercise therapy who had been admitted to the burn centre of the Maasstad Hospital between June 2016 and February 2017. Patients were asked to participate in an in-hospital aquatic exercise therapy program for a minimum of 2 weeks, 2 times per week, or otherwise serve as control by having land-based exercise therapy (regular care). Feasibility of aquatic exercise therapy was assessed by comparing the number of eligible patients to the number of patients that could actually participate, monitoring attendance rates, monitoring complications, and evaluating early experiences. Acceptability was assessed using the Water Exercise Acceptability Questionnaire. Results: Eleven patients were invited and ten of them agreed to participate. All chose aquatic instead of land-based exercise therapy. Participants were aged between 19 and 64 years and their burns affected 18–53% of total body surface area (TBSA). Aquatic exercise therapy appeared feasible in nine of 13 eligible patients (69%). Attendance rates were high (42–100%) and the majority of participants (n = 9) continued with aquatic exercise therapy beyond the initial two weeks. No serious complications (e.g. infections) occurred. Adverse symptoms (wound healing issues) were reported in five participants, but in four of them these were not likely to be due to the aquatic exercise therapy. Enjoyment was high and adherence to the aquatic exercise therapy was further facilitated by support from staff, a sense of achievement, noticeable improvements, personal motivation, and support from other participants. Peer support was reported as a positive side effect. Conclusions: These preliminary results indicate that aquatic exercise therapy is both feasible and acceptable for the majority of adult burn patients with an indication for supervised exercise therapy. No indications were found for an increased risk of infection or other serious complications.

Introduction Many nursing homes (NHs) are affected by COVID-19 and 30-day mortality is high. Knowledge on recovery of NH residents after COVID-19 is limited. Therefore, we investigated the trajectory in the first three months after a COVID-19 infection in NH residents. Methods Retrospective observational cohort study of Dutch NH residents with COVID-19 between 1 September 2020 and 1 March 2021. Prevalence of COVID-19 symptoms and functioning was determined using interRAI (ADL-Hierarchy Scale (ADL-HS), Cognitive Performance Scale (CPS) and Revised Index of Social Engagement (RISE)) at four time points. Descriptive and pattern analyses were performed. Results Eighty-six residents were included. Symptom prevalences after three months were higher than at baseline. At group level, functioning on all domains deteriorated and was followed by recovery towards baseline, except for ADL functioning. There were four trajectories; 9.3% had no deterioration. Total and partial recovery occurred in respectively 30.2% and 55.8% of the residents. In 4.7% there was no recovery. Conclusion In 86% of NH residents surviving three months after COVID-19, occurrence of COVID-19 symptoms and deterioration in functioning was followed by recovery. COVID-19 symptoms fatigue and sleeping behaviour were significantly more prevalent, and ADL functioning was significantly lower, at three months compared to baseline.

Abstract Background Many persons with autism spectrum disorder (ASD) are treated in long-term specialised care. In this population, suicidal behaviour troubles patients, families, and specialists in the field because it is difficult to treat. At present, there is no documented effective therapy for suicidal behaviour in ASD (Autism Research 7:507-521, 2014; Crisis 35:301-309, 2014). Dialectical Behaviour Therapy (DBT) is an efficacious treatment programme for chronically suicidal and/or self-harm behaviour in patients with Borderline Personality Disorder (J Psychiatry 166:1365-1374, 2014; Linehan MM. Cognitive behavioural therapy of borderline personality disorder. 1993). This study will evaluate the efficacy of DBT in persons with ASD and suicidal/ self- destructive behaviour in a multicentre randomised controlled clinical trial. Method One hundred twenty-eight persons with autism and suicidal and/or self-harming behaviour will be recruited from specialised mental healthcare services and randomised into two conditions: 1) the DBT condition in which the participants have weekly individual cognitive behavioural therapy sessions and a 2.5 h skills training group session twice per week during 6 months, and 2) the treatment as usual condition which consists of weekly individual therapy sessions of 30–45 min with a psychotherapist or social worker. Assessments will take place at baseline, at post-treatment (6 months), and after a follow-up period of 12 months. The mediators will also be assessed at 3 months. The primary outcome is the level of suicidal ideation and behaviour. The secondary outcomes are anxiety and social performance, depression, core symptoms of ASD, quality of life, and cost-utility. Emotion regulation and therapeutic alliance are hypothesised to mediate the effects on the primary outcome. Discussion The results from this study will provide an evaluation of the efficacy of DBT treatment in persons with ASD on suicidal and self-harming behaviour. The study is conducted in routine mental health services which enhances the generalisability of the study results to clinical practice. Trial registration ISRCTN96632579 . Registered 1 May 2019. Retrospectively registered.

This article offers a systematic review of studies of personality and the dimensions of temperament and character, personality pathology, and personality disorders (PDs) in adults with autism spectrum disorder (ASD). Fifteen studies met the inclusion criteria for the review, from which seven studies were meta-analyzed. Results indicate that ASD is significantly and systematically associated with an introvert, rigid, passive-dependent temperament with low novelty seeking, high harm avoidance, low reward dependence and high persistence, and with an immature and poorly developed character with low self-directedness, low cooperativeness, and high self-transcendence. The review further finds a positive correlation between ASD (severity) and neuroticism and a negative correlation between ASD (severity) and extraversion, openness to experience, agreeableness, and conscientiousness. It also finds a positive correlation with paranoid, schizoid, schizotypal, avoidant, and obsessive-compulsive PDs. However, the far from perfect associations indicate there is considerable variation between people with ASD in their personality and personality pathology. In order to obtain a comprehensive picture of an individual with ASD and to implement the most effective intervention plans for and therapeutic relationship with adults with ASD, temperament, character, and comorbid personality pathology and PDs should be considered.

Om te anticiperen op mogelijk toekomstig lijden als gevolg van dementie stellen mensen steeds vaker een schriftelijke euthanasieverklaring op. In de praktijk is euthanasie bij mensen met gevorderde dementie en een schriftelijke euthanasieverklaring uitzonderlijk. Casemanagers dementie zijn vaak al vanaf het begin van het ziekteproces nauw betrokken bij mensen met dementie. Het onderzoeksdoel is om meer inzicht te krijgen in hoe casemanagers omgaan met schriftelijke euthanasieverklaringen van mensen met dementie. Deze kwalitatieve studie bestond uit twee focusgroepen met in totaal tien casemanagers. Betrokkenheid van casemanagers bleek zich niet te beperken tot gesprekken over schriftelijke euthanasieverzoeken, maar zich te verbreden naar gesprekken over euthanasie en ‘toekomstige euthanasiewensen’. Een thematische analyse naar hoe casemanagers omgaan met toekomstige euthanasiewensen leverde vijf thema’s op: 1) Scenario’s in de praktijk; 2) Introductie van de schriftelijke euthanasieverklaring als gespreksonderwerp; 3) Begeleiding en ondersteuning van de cliënt en mantelzorger; 4) Samenwerking met andere zorgverleners; 5) Ervaren dilemma’s. Het verkregen inzicht in de rol die casemanagers dementie op zich nemen bij de begeleiding van mensen met dementie en een toekomstige euthanasiewens draagt bij aan een verdere optimalisatie van de multidisciplinaire samenwerking tussen de huisarts en casemanager dementie. Nader onderzoek naar de meerwaarde van deze samenwerking bij de vaak complexe vraagstukken rondom euthanasie bij dementie wordt aanbevolen. Summary To anticipate future suffering due to dementia a growing number of people draft written advance euthanasia directives (AED). In actual practice the number of cases of euthanasia in advanced dementia is very limited. Dementia case managers are often closely involved since an early stage of the disease in the support and guidance of people with dementia and are well positioned to talk about the AED. This study aims to acquire insights into the way case managers deal with AEDs of people suffering from dementia. This qualitative study consists of two focus groups of ten case managers in total. Involvement of case managers was found to extend beyond discussing merely AEDs, to also the broader discussion of euthanasia and ‘future euthanasia wishes’ of patients with dementia. A thematic analysis of how case managers proceed with future euthanasia wishes yielded five themes: 1) Scenarios in practice; 2) Introduction of a written euthanasia directive as a conversation topic; 3) Guidance and support of the client and caregiver; 4) Cooperation with other health care workers; 5) Experienced dilemmas. The insights, provided by this study, into the role of case managers regarding the guidance of people with dementia and a future euthanasia wish contributes to a further optimization of the multidisciplinary collaboration between general practitioners and dementia case managers. Further research into the added value of this collaboration in dealing with these complicated issues around euthanasia in dementia care, is recommended.