Irrelevant Interests? A Qualitative Study Into How German Family Surrogates of Persons Living With Dementia Fulfill Their Legal Role as Advocates of an Advance Directive.

BACKGROUND AND OBJECTIVES: German legislation establishes advance directives (ADs) as legally binding instruments that all involved parties need to adhere to. This applies also to family members who have been authorized as official surrogates of the AD's author. As surrogates, they are expected to make sure that the AD is being implemented. Our study aims at uncovering how family members experience their legally assigned role as an advocate of an AD. RESEARCH DESIGN AND METHODS: We conducted 25 episodic interviews with family surrogates of persons living with dementia and used thematic analysis to make sense of our interview data. RESULTS: Family surrogates expressed scepticism toward ADs as instruments for planning end-of-life care. They did not necessarily follow the decisions expressed in the AD. We found cases in which family surrogates intentionally refrained from bringing the ADs to the attention of health care providers as well as cases in which the ADs conflicted with self-related interests of family surrogates. DISCUSSION AND IMPLICATIONS: Our findings lead us to critique the legal construction of family surrogates as advocates of the AD. Family members are directly and enduringly affected by the end-of-life care decisions that the AD sets out and are thus no neutral agents who have no stake in the matter. Expecting them to simply transmit decisions formulated in the AD means expecting them to render their own interests irrelevant-which, arguably, might be too much to ask.

Online counselling for family carers of people with young onset dementia: The RHAPSODY-Plus pilot study.

Objective: Compared to late life dementia, Young Onset Dementia (YOD) has its own distinct challenges, including a lack of specialised and age-appropriate support services. Carers of people with YOD experience higher levels of psychological and physical symptoms, and lower quality of life. This study (RHAPSODY-Plus) assessed the acceptability and feasibility of combining RHAPSODY (Research to Assess Policies and Strategies for Dementia in the Young; a web-based information and skill-building programme for carers of people with YOD) with individually tailored support sessions with health professionals (a social worker and a clinical psychologist) provided via online videoconferencing. Methods: Participants (n = 20) were informal carers aged over 18 years, who were caring for a person with YOD (either Alzheimer's disease or frontotemporal dementia type). Participants used the RHAPSODY programme for 4 weeks, then attended 2 support sessions. Participants and the health professionals then attended individual feedback sessions. Feedback was collected via open-ended and Likert-style questions. Results: The majority of carers rated the RHAPSODY-Plus programme as good to very good, demonstrating a high level of acceptability. Positive feedback about the programme included being able to receive personal advice additionally to the information provided in RHAPSODY. The healthcare professionals also thought the programme was acceptable and beneficial for access to support. Some limitations in the feasibility of videoconferencing included network and technical issues and the loss of non-verbal communication. Conclusions: This online pilot study had a high level of acceptability, demonstrating the potential of an individualised multi-modal intervention for carers of people with YOD which offers opportunities to overcome geographical and service access barriers.

Inappropriate Involvement? Presenting Empirical Insight into the Preparation Phase of Advance Directives of Persons Living with Dementia Under German Legislation.

The scholarly debate on advance directives (ADs) in the context of dementia is mainly built around ethical arguments. Empirical studies that shed light into the realities of ADs of persons living with dementia are few and far between and too little is known about the effect of national AD legislation on such realities. This paper offers insight into the preparation phase of ADs according to German legislation in the context of dementia. It presents results from a document analysis of 100 ADs and from 25 episodic interviews with family members. Findings show that drafting an AD involves family members and different professionals in addition to the signatory, whose cognitive impairment differed considerably at the time of preparing the AD. The involvement of family members and professionals is at times problematic, which prompts the question of how much and what kind of involvement of others turns an AD of a person living with dementia into an AD about a person living with dementia. The results invite policy makers to critically review legislation on ADs from the perspective of cognitively impaired persons, who might find it difficult to protect themselves from inappropriate involvement when completing an AD.

Experiences with alternative online lectures in medical education in obstetrics and gynecology during the COVID-19 pandemic-possible efficient and student-orientated models for the future?

PURPOSE: The onset of the COVID-19 pandemic posed an eminent challenge for medical teachers worldwide. Face-to-face lectures and seminars were no longer possible, and alternatives had to be found. E-learning concepts quickly emerged as the only practicable solutions and also offered the opportunity to evaluate whether traditional face-to-face lectures could be translated into an online format, independent of the COVID-19 pandemic. METHODS: We offered an e-learning program consisting of lecture notes, screencasts with audio narration, and online webinars that covered topics normally taught in traditional lectures and seminars. To evaluate the learning behavior and quality of our e-learning program, we drafted a questionnaire that students completed at the end of the 2020 summer semester that had been designed to enable a comparative analysis of the different e-learning modules. RESULTS: Voluntary participation in the online courses was high. Survey analysis revealed high satisfaction with and a distinctive preference for the format, even under regular, COVID-19-independent conditions. In general, a positive appraisal of e-learning-especially as a substitute for regular lectures-was found. Students also reported higher studying efficiency. Exam results were equal to those of previous semesters. CONCLUSION: Both acceptance of and satisfaction with our e-learning modules were high, and students displayed increased demand for this kind of e-learning format. We, therefore, conclude that e-learning offerings could serve as reasonable, efficient, student-orientated substitutes for certain medical courses, especially lectures. These curricular adaptations would correlate with the high digitalization seen in students' everyday lives. This correlation may also hold true independent of the ongoing COVID-19 pandemic.

The role of gender-specific factors in the choice of specialty training in obstetrics and gynecology: results from a survey among medical students in Germany.

PURPOSE: The field of obstetrics and gynecology (OB/GYN) is facing growing competition for young professionals in Germany, with high interest rates among female graduates and a declining proportion of male students who choose residency training in the field. The aim of this study is to analyze general and gender-dependent factors that influence the decision for or against specialty training in OB/GYN among medical students in Germany. METHODS: Between February and November 2019, n = 346 medical students in their 5th and 6th year of undergraduate training at Heidelberg University received a questionnaire with 44 items. RESULTS: n = 286 students (61.3 female; 38.7% male) participated in the study. 28% of the female students and 9% of the male students had considered OB/GYN for their specialty training. The students reported different general and gender-specific influencing factors in their choice of a specialty. Both genders desired a good work-life-balance, however, in comparison with their female colleagues, male students had heavily weighted factors related to their later careers and professional success, including competition among colleagues. Male students had gained little practical experience during compulsory internships (26.9% for females vs. 8.8% for males) or had chosen their final-year elective in OB/GYN (15.9% for females vs. 5.5% for males). Female students had worried about the negative effects of their sex on their career (35.4% for females vs. 5.9% for males). CONCLUSION: OB/GYN must become more appealing and attractive to young female and male professionals alike. A better compatibility of career and family should go hand in hand with the implementation of differentiated, (extra) curricular teaching approaches that take the different preferences of female and male students into account.

Perceived Need and Acceptability of an App to Support Activities of Daily Living in People With Cognitive Impairment and Their Carers: Pilot Survey Study.

BACKGROUND: Modern technologies, including smartphone apps, have the potential to assist people with cognitive impairment with activities of daily living, allowing them to maintain their independence and reduce carer burden. However, such tools have seen a slow rate of uptake in this population, and data on the acceptability of assistive technologies in this population are limited. OBJECTIVE: This pilot study included older adults with cognitive impairment and their carers, and explored the perceived needs for and acceptability of an app that was designed to be a simple assistive tool for activities of daily living. In particular, this study aimed to assess the acceptability of common app functions such as communication, reminder, navigation, and emergency tools in this population, and to compare patients' and carers' responses to them. METHODS: A total of 24 German participants with mild cognitive impairment or dementia and their family carers separately completed two short questionnaires. The first questionnaire asked the participants with cognitive impairment and their carers to self-rate the patients' cognitive impairment levels and affinity to technology. Following a demonstration of the app, participants rated the usability and acceptability of the app and its functions in a second questionnaire. RESULTS: Participants rated themselves as much less cognitively impaired than their carers did (P=.01), and insight into the level of support they received was low. The majority of the participants (19/24, 79%) and their carers (20/24, 83%) had low affinity to technology, and even after the demonstration, 63% (15/24) of the participants had low interest in using the app. A breakdown of acceptability responses by app function revealed that participants were more amenable to the reminder function, the emergency feature, and a wearable form of the app. Features that centered around carers monitoring participants' movements were reported to be less acceptable to participants. CONCLUSIONS: This study highlights the importance of focusing on acceptability and the consumer's perceptions in the development of assistive technology for older adults with cognitive impairment. Participants showed an aversion to functions they perceived as eroding their independence, while functions that more closely aligned with independence and autonomy were perceived as more acceptable.

Sex Differences in Neuropsychological Test Performance in Alzheimer's Disease and the Influence of the ApoE Genotype.

BACKGROUND: Only few studies exist reporting sex differences in the Alzheimer disease (AD) patients regarding cognitive profile, brain damage, and risk factors. The present study investigated the influence of sex in combination with the Alzheimer risk allele, ε4-allele of apolipoprotein E, on cognitive performance. MATERIALS AND METHODS: We examined the effect of sex and ApoE genotype on a range of neuropsychological markers from the German version of the Consortium to Establish a Registry in Alzheimer's Disease Neuropsychological Battery in a monocentric study of 399 AD patients. RESULTS: Male patients had significantly more years of school and occupational education compared with women. Male AD patients outperformed female patients in tasks of object naming, constructional praxis, and constructional praxis recall. There was no statistically significant interaction effect between sex and ε4-allele of apolipoprotein E for any of the examined variables. CONCLUSIONS: The superiority of healthy men compared with women in tasks of object naming, constructional praxis, and visual memory seems to remain stable when people develop AD, indicating larger cognitive reserves in men. In contrast, findings that cognitively healthy women outperform men in tests of verbal memory and verbal fluency are not stable in AD. Further studies are needed to gain insight in the reasons for sex differences.

Modern technology to support carers of care recipients with dementia or functional mental illness: promising progress, but a long road ahead.

There is no doubt that family carers who look after a family member with dementia or with a functional mental illness fulfill an important role, not only for their loved one, but also for the health and aged care systems of the countries they live in. Due to increasing life expectancy, but also improved healthcare the number of family carers supporting older care recipients with functional mental illness or dementia is on the rise. While the carer role often can offer rewarding experiences caregivers are at increased risk of stress, depression, sleep problems, and often experience poor health outcomes with increased morbidity and mortality (Oyebode, 2003). Next to the stressors directly associated with the carer role, they often do not have the time to engage in healthy behavior to protect their physical, mental, and cognitive health (Loi et al., 2014). There is a wealth of literature providing evidence about effective strategies to support carers and the recent Lancet Commission on Dementia prevention, intervention, and care highlighted the importance of exploring how the use of technological innovations could support carers better (Livingston et al., 2017). The use of modern technology in this context can mean a variety of approaches, such as internet-based programs to provide education and skill-building, virtual support to assist with monitoring and managing challenging behavior, online support groups, and the use of assistive or therapeutic technology to improve safety, enable positive activities, and support communication between carer and care recipient, to name just a few (D'Onofrio et al., 2017; Ienca et al., 2017; Livingston et al., 2017). More specifically, telehealth approaches via videoconferences have the potential to better support carers who live in rural or remote regions (O'Connell et al., 2014) or who cannot attend face-to-face support programs for other reasons such as inability to leave the care recipient alone at home, being a multiple carer or having a disability themselves to give just some examples.