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Background: Advance care planning (ACP) is a process of communication in which patients and family caregivers discuss preferences for future care with the healthcare team. For persons with dementia, it is crucial to timely engage in ACP. Therefore, we study ACP in dementia using electronic health record data. This study aims to determine how often ACP conversations are recorded, analyze time from dementia diagnosis until the first recorded conversation and time from the first recorded conversation to death, and analyze which factors are associated with the timing of ACP., Methods: Electronic records of 15,493 persons with dementia in Dutch general practice between 2008 and 2016 were linked to national administrative databases. ACP conversations and indicators of health deficits to determine frailty were obtained from electronic records coded with the International Classification of Primary Care. Socio-demographic characteristics were derived from the national population registry managed by Statistics Netherlands. Date of death was derived from the Personal Records Database (2008-2018)., Results: ACP was recorded as such as 22 (95% CI, 20-23) first conversations per 1,000 person-years of follow-up. The hazard ratio (HR) for the first conversation increased every year after dementia diagnosis, from 0.01 in the first year to 0.07 in the 7th and 8th year after diagnosis. Median time from a first conversation to death was 2.57 years (95% CI, 2.31-2.82). Migrant status [non-Western vs. Western (HR 0.31, 95% CI, 0.15-0.65)] was significantly associated with a longer time from dementia diagnosis to the first conversation. Being pre-frail (HR 2.06, 95% CI, 1.58-2.69) or frail (HR 1.40, 95% CI, 1.13-1.73) vs. non-frail was significantly associated with a shorter time from dementia diagnosis to the first ACP conversation., Conclusion: ACP conversations in Dutch general practice were rare for persons with dementia, or was rarely recorded as such. In particular among persons with a non-Western migration background and those who are non-frail, it started long after diagnosis. We advise further research into public health and practical strategies to engage persons with dementia with a non-Western migration background and non-frail persons early in the disease trajectory in ACP., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. The reviewer FP is currently organizing a Research Topic with one author HH., (Copyright © 2022 Azizi, Tilburgs, van Hout, van der Heide, Verheij, Achterberg, van der Steen and Joling.)

Social distancing measures imposed because of the COVID-19 pandemic presented challenges to the health and wellbeing of people with dementia, family carers, and healthcare professionals. This study investigated the impact of these measures on all involved in the care for people with dementia. For this qualitative study, 20 family carers and 20 healthcare professionals from home care and long-term care (LTC) participated in a semi-structured interview. Interviews were analysed using an inductive thematic analysis approach. For people with dementia, the social distancing measures resulted in a deterioration of physical health. The impact on their emotional state and behaviour depended on the stage of dementia. Family carers experienced difficulty coping with visiting restrictions, anxiety regarding safety, and changes in carer burden. Healthcare professionals had an increased workload, and felt guilty about adhering to restrictive measures. Differences between home care and LTC were reported (i.e., societal initiatives focussed on LTC, scarcity of activities for community-dwelling people with dementia, use of personal protective equipment more intrusive for home care). The social distancing measures had a negative impact on persons with dementia, their family carers, and healthcare professionals. More attention is needed for community-dwelling people with dementia and family carers in times of social isolation.

Importance and Objective: Conducting advance care planning (ACP) conversations with people with dementia and their relatives contributes to providing care according to their preferences. In this review, we identify moral considerations which may hinder or facilitate physicians in conducting ACP in dementia., Design: For this meta-review of systematic reviews and primary studies, we searched the PubMed, Web of Science and PsycINFO databases between 2005 and 30 August 2019. We included empirical studies concerning physicians' moral barriers and facilitators of conversations about end-of-life preferences in dementia care. The protocol was registered at Prospero (CRD42019123308)., Setting and Participants: Physicians and nurse practitioners providing medical care to people with dementia in long-term and primary care settings. We also include observations from patients or family caregivers witnessing physicians' moral considerations., Main Outcomes: Physicians' moral considerations involving ethical dilemmas for ACP. We define moral considerations as the weighing by the professional caregiver of values and norms aimed at providing good care that promotes the fundamental interests of the people involved and which possibly ensues dilemmas., Results: Of 1347 studies, we assessed 22 systematic reviews and 51 primary studies as full texts. We included 11 systematic reviews and 13 primary studies. Themes included: (1) beneficence and non-maleficence; (2) respecting dignity; (3) responsibility and ownership; (4) relationship and (5) courage. Moral dilemmas related to the physician as a professional and as a person. For most themes, there were considerations that either facilitated or hindered ACP, depending on physician's interpretation or the context., Conclusions: Physicians feel a responsibility to provide high-quality end-of-life care to patients with dementia. However, the moral dilemmas this may involve, can lead to avoidant behaviour concerning ACP. If these dilemmas are not recognised, discussed and taken into account, implementation of ACP as a process between physicians, persons with dementia and their family caregivers may fail., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Euthanasia has been regulated by law under strict conditions in the Netherlands since 2002. Since then the number of euthanasia cases has constantly increased, and increased exponentially for patients with dementia (PWD). The number of euthanasia requests by such patients is even higher. Recently, an interview study showed that physicians who are confronted with a PWD's euthanasia request experience problems with communication, pressure from relatives, patients, and society, workload, interpretation of the law, and ethical considerations. Moreover, if honoured, the physician and patient may interpret the right moment for euthanasia differently., Aim: To identify ways of supporting GPs confronted with a PWD's euthanasia request., Design and Setting: Two expert nominal group meetings were organised with Dutch care physicians for older people, GPs, legal experts, a healthcare chaplain, a palliative care consultant, and a psychologist., Method: A total of 15 experts participated in the meetings. Both meetings were audio-recorded, transcribed verbatim, and analysed using thematic analysis., Results: Four themes emerged from the meetings: support provided by healthcare professionals, influencing public opinion, educational activities, and managing time and work pressure. The need for support was considered highest for GPs for all of these themes., Conclusion: Consensus was reached with the help of experts on support needs for GPs confronted with euthanasia requests from PWD. A concise and clear explanation of the law is strongly desired. Changing public opinion seems the most challenging and a long-term aim. Communication training for finding the right balance between the physician's professional responsibility and the patient's autonomy should be made available, as a short-term aim., (©The Authors.)

Background: General practitioners (GPs) are advised to offer advance care planning (ACP) to people with dementia (PWD). In a randomized controlled trial, an educational intervention for GPs aimed at initiating and optimizing ACP proved to be effective. During the intervention most GPs were accompanied by their practice nurse (PN). To provide insights into the intervention's successful components and what could be improved, we conducted a process evaluation and explored implementation, mechanisms of impact and contextual factors., Methods: We used the Medical Research Council guidance for process evaluations. Implementation was explored identifying reach and acceptability. We performed descriptive analyses of participants' characteristics; selection, inclusion and intervention attendance; a GP post-intervention survey on initiating ACP; a post intervention focus group with trainers of the intervention. Mechanisms of impact were explored identifying adoption and appropriateness. We used: participants' intervention ratings; a GP post-intervention survey on conducting ACP; ACP documentation in PWD's medical files; post-intervention interviews with PWD/FC dyads. All data was used to identify contextual factors., Results: The intervention was implemented by a small percentage of the total Dutch GP population invited, who mostly included motivated PWD/FC dyads with relatively little burden, and PWD with limited cognitive decline. The mechanisms of impact for GPs were: interactively learning to initiate ACP with training actors with a heterogeneous group of GPs and PNs. For PWD/FCs dyads, discussing non-medical preferences was most essential regarding their SDM experience and QoL. Some dyads however found ACP stressful and not feasible. Younger female GPs more often initiated ACP. Male PWD and those with mild dementia more often had had ACP. These characteristics and the safe and intimate training setting, were important contextual facilitators., Conclusion: We recommend Interventions aimed at improving ACP initiation with PWD by GPs to include interactive components and discussion of non-medical preferences. A safe environment and a heterogeneous group of participants facilitates such interventions. However, in practice not all FC/PWD dyads will be ready to start. Therefore, it is necessary to check their willingness when ACP is offered.

Background: In the Netherlands, in 2002, euthanasia became a legitimate medical act, only allowed when the due care criteria and procedural requirements are met. Legally, an Advanced Euthanasia Directive (AED) can replace direct communication if a patient can no longer express his own wishes. In the past decade, an exponential number of persons with dementia (PWDs) share a euthanasia request with their physician. The impact this on physicians, and the consequent support needs, remained unknown. Our objective was to gain more insight into the experiences and needs of Dutch general practitioners and elderly care physicians when handling a euthanasia request from a person with dementia (PWD)., Methods: We performed a qualitative interview study. Participants were recruited via purposive sampling. The interviews were transcribed verbatim, and analyzed using the conventional thematic content analysis., Results: Eleven general practitioners (GPs) and elderly care physicians with a variety of experience and different attitudes towards euthanasia for PWD were included. Euthanasia requests appeared to have a major impact on physicians. Difficulties they experienced were related to timing, workload, pressure from and expectations of relatives, society's negative view of dementia in combination with the 'right to die' view, the interpretation of the law and AEDs, ethical considerations, and communication with PWD and relatives. To deal with these difficulties, participants need support from colleagues and other professionals. Although elderly care physicians appreciated moral deliberation and support by chaplains, this was hardly mentioned by GPs., Conclusions: Euthanasia requests in dementia seem to place an ethically and emotionally heavy burden on Dutch GPs and elderly care physicians. The awareness of, and access to, existing and new support mechanisms needs further exploration.

Background: ACP enables individuals to define and discuss goals and preferences for future medical treatment and care with family and healthcare providers, and to record these goals and preferences if appropriate. Because general practitioners (GPs) often have long-lasting relationships with people with dementia, GPs seem most suited to initiate ACP. However, ACP with people with dementia in primary care is uncommon. Although several barriers and facilitators to ACP with people with dementia have already been identified in earlier research, evidence gaps still exist. We therefore aimed to further explore barriers and facilitators for ACP with community-dwelling people with dementia., Methods: A qualitative design, involving all stakeholders in the care for community-dwelling people with dementia, was used. We conducted semi-structured interviews with community dwelling people with dementia and their family caregivers, semi structured interviews by telephone with GPs and a focus group meeting with practice nurses and case managers. Content analysis was used to define codes, categories and themes., Results: Ten face to face interviews, 10 interviews by telephone and one focus group interview were conducted. From this data, three themes were derived: development of a trust-based relationship, characteristics of an ACP conversation and the primary care setting. ACP is facilitated by a therapeutic relationship between the person with dementia/family caregiver and the GP built on trust, preferably in the context of home visits. Addressing not only medical but also non-medical issues soon after the dementia diagnosis is given is an important facilitator during conversation. Key barriers were: the wish of some participants to postpone ACP until problems arise, GPs' time restraints, concerns about the documentation of ACP outcomes and concerns about the availability of these outcomes to other healthcare providers., Conclusions: ACP is facilitated by an open relationship based on trust between the GP, the person with dementia and his/her family caregiver, in which both medical and non-medical issues are addressed. GPs' availability and time restraints are barriers to ACP. Transferring ACP tasks to case managers or practice nurses may contribute to overcoming these barriers.

Background: Due to the disease's progressive nature, advance care planning (ACP) is recommended for people with early stage dementia. General practitioners (GPs) should initiate ACP because of their longstanding relationships with their patients and their early involvement with the disease, however ACP is seldom applied., Aim: To determine the barriers and facilitators faced by GPs related to ACP with people with dementia., Data Sources: We systematically searched the relevant databases for papers published between January 1995 and December 2016, using the terms: primary healthcare, GP, dementia, and ACP. We conducted a systematic integrative review following Whittemore and Knafl's method. Papers containing empirical data about GP barriers and/or facilitators regarding ACP for people with dementia were included. We evaluated quality using the Mixed-Method-Appraisal-Tool and analyzed data using qualitative content analysis., Results: Ten qualitative, five quantitative, and one mixed-method paper revealed four themes: timely initiation of ACP, stakeholder engagement, important aspects of ACP the conversation, and prerequisites for ACP. Important barriers were: uncertainty about the timing of ACP, how to plan for an uncertain future, lack of knowledge about dementia, difficulties assessing people with dementia's decisional capacities, and changing preferences. Facilitators for ACP were: an early start when cognitive decline is still mild, inclusion of all stakeholders, and discussing social and medical issues aimed at maintaining normal life., Conclusion: Discussing future care is difficult due to uncertainties about the future and the decisional capacities of people with dementia. Based on the facilitators, we recommend that GPs use a timely and goal-oriented approach and involve all stakeholders. ACP discussions should focus on the ability of people with dementia to maintain normal daily function as well as on their quality of life, instead of end-of-life-discussions only. GPs need training to acquire knowledge and skills to timely initiate collaborative ACP discussions., Competing Interests: The authors have declared that no competing interests exist.