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Background People living with dementia account for a large proportion of deaths due to COVID-19. Family carers are faced with making significant and emotive decisions during the pandemic, including decisions about end of life. We aimed to explore the challenges faced by family carers of people living with dementia during the first wave of the COVID-19 pandemic in England, as reported by charity telephone support line staff, who were able to objectively discuss a range of different experiences of many different carers who call the helpline. In particular, we focussed on key concerns and areas of decision making at the end of life. Methods We conducted a qualitative study using semi-structured interviews with eight telephone support line staff from two UK based charities who support carers of people living with dementia and those at the end of life. Interviews were conducted in the first wave of the pandemic in England in May–June 2020. Results An overarching theme of uncertainty and reactivity during a crisis was identified, and within this, five main themes were identified: concerns about care transitions, uncertainty in engaging support and help, pandemic-motivated care planning, maintaining the wellbeing of the person living with dementia, and trust, loss of agency and confusion. Conclusions Family carers may be reluctant to seek support because of fear of what may happen to their relative, which may include hospitalisation and becoming ill with COVID-19, care home placement, or not being able to be with a relative at the end of life. In some cases, a lack of trust has developed, and instead carers are seeking support from alternative services they trust such as nationally known charities.This study was used to inform the development of a decision aid to support family carers making decisions about care for their relative with dementia during the pandemic, who the lack the capacity to make their own decisions.

open access article Background Family carers of people living with dementia often need support with making decisions about care. Many find end-of-life care decisions particularly difficult. The aim of this article is to present an evidence- and theoretical-based process for developing a decision aid to support family carers of people with dementia towards the end-of-life. Methods Following a systematic process, we developed a decision aid using coproduction methods and matrices to synthesize data from a systematic review and qualitative interviews with people living with dementia and family carers. Data were presented to coproduction workshops of people living with dementia, family carers, practitioners and professionals. Development was guided by the Ottawa Decision Support Framework and a modified Interprofessional Shared Decision-Making model. Results The decision aid covers four decision areas: (1) changes in care; (2) eating and drinking difficulties; (3) everyday well-being; and (4) healthcare, tests and medication. We present an interactive decision aid, using a variety of approaches including written text, Frequently Asked Questions, top tips and illustrative quotes from people living with dementia and family carers. Conclusion This is the first decision aid that focusses on multiple decisions towards the end-of-life in dementia care. The process offers a template for others to develop decision aids or similar interventions, and how to include people living with dementia in coproduction. Patient or Public Contribution Family carers provided feedback on data collection, data analysis and the decision aid, and one is a coauthor. People living with dementia and family carers were integral to the coproduction workshops.

Introduction Up to 42% of acute hospital inpatients have dementia. This can make it more difficult for patients to communicate their needs, this in turn may lead to distress and agitation. The aim of this study is to explore the prevalence of distress and discomfort in inpatients with dementia in acute hospitals who may not be able to communicate their needs. Methods A series of existing clinical and observational methods were used to measure various aspects of the experience of hospitalised in patients with dementia, and staff working with these patients on wards. These measures looked to identify sources of discomfort, observe the effect of the environment, understand how staff currently identify discomfort and explore associations with behaviours that challenge. Results 94 patients and their next of kin have been approached; 79 consented to being included in the study, and 67 have been fully assessed. Almost 20% of patients assessed have severe psychiatric problems. ~70% of patients were severely disoriented at assessment. Patients assessed were often sleepy (62%), hadn’t moved for a long period of time (48%) and reported agitation (60%), anxiety (60%) and depression (70%). Staff reported agitation and aggression in 56% of patients, with high frequencies of incidents per patient. Conclusions Signs of distress and agitation are common in hospitalised persons with dementia. Patients are often disoriented, which impedes communication of needs. This also has a high burden on staff, as many behavioural and psychiatric symptoms of dementia are experienced daily on wards.

Introduction The acute hospital is a challenging place for a person with dementia whose ability to communicate discomfort and need is impaired. Their discomfort may go unnoticed due to insufficient staffing and time resources in this acute environment. Concerns have been raised about the consequences of these overlooked discomfort (e.g. distress and agitation), and hence how we can correctly identify their sources and severity. This study aimed to describe the source of discomfort and challenging behaviours in people with dementia (PwD) in UK acute hospital. Method A cross-sectional observational study of 49 patients with dementia admitted to a NHS acute hospital. Their discomfort was detected and its sources were identified (Sources of Discomfort Scale) during an hour observation when they were at rest and moved by staff. Their challenging behaviours were also recorded (Neuropsychiatric Inventory) through interviewing with the ward staff, as well as documentation of severity of dementia and presence of delirium. Results The overall prevalence of discomfort was 98%, with excessively sleepy or tired being the commonest; 39 (80%) participants experienced three or more type of discomfort. The commonest sources of discomfort were physical (e.g. constipation) and environmental (e.g. physically restrained), affecting up to 43 (88%) and 42 (83%) participants respectively. There was also evidence of an association between delirium and sleepiness or tiredness’s discomfort, meaning that PwD with delirium were nearly triply as likely to feel uncomfortable because of sleepiness or tiredness. Challenging behaviours affected over 80% of our participants, with agitation or aggression being the commonest. On average, these behaviours were moderately severe. Conclusion Discomfort and challenging behaviours were very common in PwD admitted to acute hospitals. Patients and staff would benefit from more accurate and frequent detection of discomfort by focusing on non-pain-related discomfort and using observational scales.

IntroductionDespite community efforts to support and enable older and vulnerable people during the COVID-19 pandemic, many people with dementia and their family carers are still finding it difficult to adjust their daily living in light of the disruption that the pandemic has caused. There may be needs specific to black, Asian and minority ethnic (BAME) populations in these circumstances that remain thus far unexplored.ObjectiveThe aim of the study was to explore the effects of the COVID-19 pandemic on people living with dementia and their family carers of BAME backgrounds, in relation to their experiences of community dementia care and the impact on their daily lives.Design15 participants (persons with dementia and carers) were recruited for semistructured qualitative interviews. Respondents were of South Asian and Afro-Caribbean backgrounds. We used thematic analysis to analyse our data from a constructivist perspective, which emphasises the importance of multiple perspectives, contexts and values.ResultsThere were a number of ways that the COVID-19 pandemic has impacted BAME persons with dementia and carers with regard to their experiences of dementia community care and the impact on their everyday lives. In particular we identified eight key themes, with subthemes: fear and anxiety, food and eating (encompassing food shopping and eating patterns), isolation and identity, community and social relationships, adapting to COVID-19, social isolation and support structures, and medical interactions. Fear and anxiety formed an overarching theme that encompassed all others.DiscussionThis paper covers unique and underexplored topics in a COVID-19-vulnerable group. There is limited work with these groups in the UK and this is especially true in COVID-19. The results showed that such impacts were far-reaching and affected not only day-to-day concerns, but also care decisions with long-ranging consequences, and existential interests around fear, faith, death and identity.

The COVID-19 global pandemic has had a significant impact in the way services are accessed and perceived by patients and their carers. Trust in services has shifted, and relationships with healthcare professionals have been affected, with carers now seeking alternative and more accessible sources of support. The aim of this paper is to explore the challenges and concerns including issues around trust that carers of people living with dementia and terminal illness have brought to support helplines, the decisions they are having to make, and the impact that the pandemic has had on end of life care. Eight helpline support workers were recruited from the Dementia UK and Marie Curie organisations, and semi-structured qualitative interviews were conducted through video calls on Microsoft Teams. Interviews were recorded with participants’ consent and transcribed and checked via the Microsoft Stream automated system. The data was analysed by means of thematic analysis on NVIVO 11. Interview data was coded according to the point of time in the pandemic; early, later, or general. It was found that issues of trust, perceived loss of agency and confusion regarding government guidelines were expressed from the beginning of the pandemic to the current day. These stemmed from situations including care within hospitals and care homes, particularly due to a lack of communication from the aforementioned about the welfare of their relatives, and choices being removed from carers about their relatives’ discharge pathways. There were also concerns raised about the rapidly and constantly changing guidelines for vulnerable people during the pandemic, with carers seeking information and reassurance from charity helplines rather than authority figures and the government.

IntroductionCOVID-19 as a pandemic has disproportionately affected older adults, including those with dementia. The effects on health and social care systems has necessitated a rapid-response approach to care planning and decision-making in this population, with reflexivity and responsiveness to changing individual and system needs at its core. In light of this, a decision-making tool to help families of persons with dementia was developed using a combination of qualitative data and evidence synthesis.ObjectivesTo develop a decision-aid using a combination of assessment and evidence-gathering methods for families of persons with dementia.MethodsSemi-structured interviews with helpline staff from national end-of-life and supportive care organisations formed the basis of the tool design. Co-design with people living with dementia, current and former carers and experts in general practice and social care shaped the next stage. Simultaneously, a rapid review of current evidence on making decisions with older people at the end of life was undertaken.ResultsOutput from interviews covered many topics, including trust, agency and confusion in making decisions in the context of COVID-19. The rapid review of existing evidence highlighted the need to consider both process and outcome elements of decision-making.ConclusionsCombining different sources and forms of evidence was efficient and valuable in creating a novel decision-making tool for persons with dementia and their families within the context of COVID-19. The decision-aid covered care planning, caregiver support systems, access to information and contingency considerations. Upon publication, the tool was adopted by NHS England and other leading healthcare organisations.DisclosureNo significant relationships.

BACKGROUND: the worldwide number of dementia cases is increasing, and this is a trend that is expected to continue as a growing proportion of the population ages. However, conducting research with persons suffering from dementia can be fraught due to fears surrounding research risks in vulnerable populations. This can make seeking approval for studies difficult. As research directly involving persons with dementia is key for the development of evidence-based best practice, the development of a coherent ethical strategy to perform such research feasibly and effectively is of paramount importance.OBJECTIVE: this paper aims to review and synthesise ethical challenges in performing research with persons who have dementia.METHODS: in undertaking a systematic review of the current research literature, we will identify the central issues and arguments characterising research that concerns the ethical dimensions of research participation in the dementia population. Data were analysed using both inductive and deductive content analysis. Ethical considerations in research involving persons with dementia primarily concern the representation of the interests of the person with dementia and protection of their vulnerabilities and rights.RESULTS: a total of 2,894 results were returned from initial searches, following deduplication. In total, 2,458 were excluded at title review, and following abstract review 158 papers remained; 29 papers were included for analysis after full paper review and data extraction. Papers ranged between 1995 and 2013.CONCLUSION: this review has highlighted a lack of consensus in current research and guidelines addressing these concerns; a clear stance on ethical governance of studies is important for future research and best evidence-based practice in dementia.

Introduction The National Institute for Health and Care Excellence (NICE) guideline on the diagnosis and management of the menopause states that women who are likely to go through the menopause as a result of surgical treatment should be offered information about the menopause and the importance of starting hormonal replacement therapy before they have their treatment. Objectives To determine compliance with NICE guidelines at the Royal Derby Hospital. Study design We undertook a retrospective review of all pre-menopausal women undergoing bilateral salpingo-oophorectomy for benign pathology between 1 January 2016 and 30 June 2016. Results Thirty-six cases were reviewed. Women were aged between 32.5 and 49.8 years old (median 45.13, inter-quartile range 42.6–47.6). The commonest indications for bilateral salpingo-oophorectomy were dysfunctional uterine bleeding (36.1%), chronic pelvic pain (30.5%), complex cyst (13.9%), and pre-menstrual syndrome (13.9%). Fifteen women (41.7%) did not have hormonal replacement therapy discussed. Only two (5.6%) had hormonal replacement therapy discussed pre-operatively. The remaining 19 had hormonal replacement therapy discussed post-operatively, either on the ward prior to discharge (n = 3) or, more commonly, in clinic six to eight weeks later. Although hormonal replacement therapy was only contraindicated in one woman (3%), it was only prescribed to five (24%). Results were slightly better for women under 40 but still only 28.6% had hormonal replacement therapy discussed with them pre-operatively. Conclusion This audit has demonstrated that compliance with the NICE guidelines is poor. We suspect similar results might be found in other gynaecology departments nationally. A hospital guideline to aid clinicians and a patient information sheet to educate women has been devised. A re-audit is planned six months after ratification of these documents.

To provide a clinical overview of the association between pain and delirium, the mechanisms which may underlie this and how pain can be detected and managed in delirium. There are few studies in this field. It is likely that pain is a key cause of delirium but this relationship is complex and mediated by many factors. Observational tools may help diagnose pain in delirium but need further testing. Pain is a potentially treatable cause of delirium and future research in how to better detect and managed this is required. Pain and delirium are common problems for older people. Both conditions are prevalent in acute hospital settings. In people living in the community, delirium often precipitates presentation to the emergency department. Pain and delirium are known to interact in a complex and multidirectional way. This can make it challenging for staff to recognize and treat pain in people with delirium. This paper aims to explore the complex relationship between pain and delirium and on pain assessment in delirium, drawing together evidence from a range of settings including acute medical, cardiac and orthopaedic post-operative cohorts, as well as from aged care. A limited number of studies suggest there is an association between pain and delirium; however, this is a complex, particularly where analgesics which may-themselves cause delirium are prescribed. Factors acting on the pathway between pain and delirium may include depression, sleep deprivation and disturbance of the cholinergic system. Delirium affects the ability to self-report pain. The fluctuating nature of delirium as well as reduced awareness and attention may challenge practitioners in recognizing, assessing and treating pain. Evidence concerning the reliability and validity of current observational and self-assessment tools in people with delirium is unclear but some show promise in this population. The current evidence base regarding assessing pain in people with delirium is lacking. Tentative recommendations, drawing on current guidelines require robust testing. Guidelines for people with pain and dementia require adaptations regarding the unique characteristics of delirium. The complex interplay between dementia, pain and delirium warrants further investigation across a range of settings.

Congenital dermoid cysts occur at lines of embryological fusion due to ectoderm sequestration. Despite being congenital, dermoid cysts may not present until late childhood or even later.[1][1] Implantation dermoids (epidermoid cysts) have different pathogenesis. They happen secondary to mechanical

St Christopher’s Hospice, London, was founded to provide specialist care to the incurably ill. We studied the dimensions of difference that set St Christopher’s Hospice apart from hospital care of the dying, focusing on physical space and social organization. Material from 1953 to 1980 from the Cicely Saunders Archive was analyzed qualitatively. Through thematic analysis, quotes were found and analyzed using open coding. Five themes were developed. Themes identified were home/homelike, community, consideration of others, link with outside world, and privacy. The hospice philosophy functioned as the catalyst for the development of the physical environment of St Christopher’s Hospice. Taking Habermas’ concept of lifeworld, it seems that, in contrast to acute care, the need for hospice to formulate their own lifeworld to support and fully engage patients was central. As lifeworlds are culture sensitive, this underlines the need for variation in design and organization of hospices around the world.

The optimal time to initiate antiretroviral therapy (ART) in adolescents with human immunodeficiency virus (HIV) has not been studied in randomized trials; therefore, current HIV treatment recommendations for adolescents follow adult guidelines. Adolescents and young adults aged 13–24 years are one of the fastest-growing demographic groups acquiring new infections, with 25.7% of all new HIV diagnoses occurring in this age group [1]. Trends in viral resistance patterns, initial CD4 count, and plasma RNA in this younger HIV-infected population in the United States have not been studied in depth. The Department of Health and Human Services (DHHS) Panel on Antiretroviral Guidelines for Adults and Adolescents made recommendations for earlier initiation of ART; in December 2009, the DHHS recommended ART initiation at a CD4 count of 50% of ART-naive adolescents and young adults had a CD4 count in the range recommended to begin treatment (ie

Background Ten percent of non-sudden deaths in the Netherlands occur in inpatient hospice facilities. To investigate differences between patients who are admitted to inpatient hospice care or not following application, how diagnoses compare to the national population, characteristics of application, and associations with being admitted to inpatient hospice care or not. Methods Data from a database representing over 25 % of inpatient hospice facilities in the Netherlands were analysed. The study period spanned the years 2007–2012. Multivariate regression analyses were performed to study associations between demographic and application characteristics, and admittance. Results Ten thousand two hundred fifty-four patients were included. 84.1 % of patients applying for inpatient hospice care had cancer compared to 37.0 % of deaths nationally. 52.4 % of applicants resided in hospital at the time of admission. Most frequent reasons for application were the wish to die in an inpatient hospice facility (70.5 %), needing intensive care or support (52.2 %), relieving caregivers (41.4 %) and needing pain/symptom control (39.9 %). Living alone (OR 1.68, 95 % CI 1.46–1.94), having cancer (OR 1.40, 95 % CI 1.11–1.76), relieving caregivers (OR 1.18, 95 % CI 1.01–1.38), needing pain/symptom control (OR1.72, 95 % CI 1.46–2.03) wanting inpatient hospice care until death (vs respite care) (OR 3.59, 95 % CI 2.11–6.10), wanting to be admitted as soon as possible (OR 1.64, 95 % CI 1.42–1.88), and being referred by a primary care professional (OR 1.36, 95 % CI 1.17–1.59) were positively associated with being admitted. Wishing to die in an inpatient hospice facility was negatively associated with being admitted (OR 0.85, 95 % CI 0.72–1.00). Conclusions This study suggests that when applying for inpatient hospice care, patients who seem most urgently in need of inpatient hospice care are more frequently admitted. However, non-cancer patients seem to be an under-represented population. Staff should consider application based on need for palliation, irrespective of diagnosis.

Avulsion injuries of the flexor digitorum profundus (FDP) tendon are common and widely reported [1-3].

Background In 2009 two randomised cluster trials took place to assess the introduction of the Italian Version of the Liverpool Care Pathway in hospitals and hospices. Before and after data were gathered. The primary aim of this study is to evaluate the feasibility of using a combination of assessment methods aimed at different proxy respondents to create a means of measuring quality of care at the end of life. We also aim to explore whether there are differences in response to this approach between the hospice and hospital inpatient settings. Methods A retrospective design was used. Eligible deaths were traced through death registries, and proxies were used to give information. Four procedures of assessment were used to measure different dimensions. Feasibility was assessed through compliance and adherence to the study instruments, and measured against standards derived from previous after-death studies. The proxy caregiver’s rating of the study tools was also measured, to gauge feasibility and effectiveness. All consecutive cancer deaths that occurred in the study period were eligible. In both trials, deaths were excluded if the patient was a relative of hospital/hospice staff. 145 patients were recruited from the Hospital setting, and 127 from Hospice. Results A high proportion of non-professional caregivers were interviewed – in both hospital (76.6%) and hospice (74.8%). There was no significant difference in the median number of days in each setting. 89.0% of hospital patients’ GPs and 85.0% of hospice patients’ GPs were interviewed. Care procedures were recorded in all hospice cases, and were missing in only 1 hospital case.52.7% of Hospital patients’ relatives and 64.12% Hospice relatives were assessed to have been caused a low level of distress through the study. Conclusions The data shows high levels of compliance and adherence to the study instruments. This suggests that this approach to assessing quality of care is feasible, and this coupled with low levels of distress caused by the study instruments suggest effectiveness. There were no substantial differences between the hospice and hospital settings.

Health care consumerism is an important frame in U.S. health care policy, especially in recent media and policy discourse about federal health care reform. This article reports on qualitative fieldwork with health care users to find out how people interpret and make sense of the identity of "health care consumer." It proposes that while the term consumer is normally understood as a descriptive label for users who purchase health care and insurance services, it should actually be understood as a metaphor, carrying with it a host of associations that shape U.S. health care policy debates in particular ways. Based on interviews with 36 people, patient was the dominant term people used to describe themselves, but consumer was the second most popular. Informants interpreted the health care consumer as being informed, proactive, and having choices, but there were also "semiotic traps," or difficult-to-resolve tensions for this identity. The discourse of consumerism functions in part as code for individual responsibility, and therefore as a classed moral discourse, with implications for U.S. health care policy.

Background: The Liverpool Care Pathway (LCP) is extensively used in hospices, but the literature on the process of implementation is scarce. Aim: Developing, piloting, and preliminarily assessing the LCP program within the inpatient hospice setting. Methods: This is a phase 0-1 study, according to the Medical Research Council (MRC) Framework, divided into three phases: literature review on LCP in hospice and development of the Italian version of the LCP program (LCP-I), development of a procedure for assessing the quality of the implementation process and assessing the feasibility of the implementation process, and piloting the procedure in 7 inpatient Italian hospices. Results: The LCP was implemented in all the hospices involved. A high proportion of physicians (50%-100%) and nurses (94%-100%) attended the self-education program. The self-implementation of the LCP-I program was completed in all hospices. The proportion of patients who died on LCP-I ranged between 35.6% and 89.1%. Professionals from 2 hospices reported a positive impact of the LCP-I. Conversely, professionals from 2 hospices did not recognize a positive impact of the program and did not agree to maintain the LCP-I in hospice. Finally, professionals from the other 3 hospices reported intermediate evaluations (1 stopped to use the LCP-I). Some weaknesses emerged from the external audits, related to the self-education and the self-implementation approach. Professionals required an external support from a trained palliative care team with reference to both phases. Conclusions: The LCP-I implementation within hospices is feasible, and the process of implementation is evaluable. Issues that occurred within the implementation process suggest the introduction of an external support from a trained palliative care team in implementing the LCP program.

This new analysis of 194 DNA exonerations, representing 171 criminal events, examines the types of evidence and DNA testing that have been used to free the victims of wrongful conviction. The types of DNA testing used to free the innocent parallels the growth of these techniques in forensic science. Short tandem repeat (STR) analysis now prevails (70%), though Y-STR analysis (16%) and mitochondrial testing (10%) are still used when STR analysis is not feasible, and the recently developed mini-STRs have been used for exonerations since 2008 (2.6%). The types of exculpatory evidence included intimate swabs (65%), clothing (53%), hair (13%), fingernail evidence (5%), cigarettes (3%), and other evidence. The most common factor associated with wrongful convictions was misidentification (75%), including misidentification by the victim (65%). False confessions (including admissions and pleas) were obtained in 30% of the cases, and informant testimony (including jailhouse and government informants) was used in 22% of the false convictions. Several types of invalid forensic science testimony were used to wrongfully convict in the 146 trials where transcripts or reliable forensic science data were available for analysis. Invalid testimony included serology (38%), hair comparison (22%), fingerprint comparison (2%), and bite mark comparison (3%). In 43% of the exonerations, the true perpetrator of the crime was identified through postconviction testing.

Neutrophilic panniculitis is a rare adverse effect of therapy with selective BRAF inhibitors. We report a case of neutrophilic panniculitis in a 15-year-old girl receiving treatment with vemurafenib for a brainstem glioma. Clinicians should be aware of this rare but important side effect of vemurafenib. This is the first report of neutrophilic panniculitis in a child treated with vemurafenib.

Context Despite the recent declines in rates of teenage pregnancy, relatively little is known about the few programs that have been successful in reducing adolescent pregnancy. Methods Six agencies in New York City each randomly assigned 100 disadvantaged 13-15-year-olds to their usual youth program or to the intervention being tested--the Children's Aid Society-Carrera program, a year-round afterschool program with a comprehensive youth development orientation. Both program and control youth were followed for three years. Multivariate regression analyses assessed the effects of program participation on the odds of current sexual activity, use of a condom along with a hormonal contraceptive, pregnancy and access to good health care. Results Seventy-nine percent of participants remained in the program for three full years. Female program participants had significantly lower odds than controls of being sexually active (odds ratio, 0.5) and of having experienced a pregnancy (0.3). They had significantly elevated odds of having used a condom and a hormonal method at last coitus (2.4). However, participation in the program created no significant impact on males' sexual and reproductive behavior outcomes. Nonetheless, program participants of both genders had elevated odds of having received good primary health care (2.0-2.1). Conclusions This program is one of only four whose evaluation has successfully documented declines in teenage pregnancy using a random-assignment design. Better outcomes among males may be achieved if programs reach them even earlier than their teenage years.

Background A palliative approach at the end of life typically involves forgoing certain drugs and procedures and starting others - weighing burden against potential benefit. An assessment of the palliative approach may be undertaken by investigating which drugs and procedures are used in the dying phase, and at what frequencies. Methods Drugs were classified as potentially (in)appropriate based on expert classification. Procedures were classed as therapeutic or diagnostic. 271 consecutive cancer deaths from across 16 hospital general wards and 5 hospices in Italy gathered data on drugs and procedures in the final three days of life through a standardised form. Differences between the two groups were tested using chi-square testing, and logistic regressions were performed to control for patient characteristics. Results 75.0% of patients in hospital received 3 or more potentially inappropriate drugs in their last three days of life, against 42.6% in hospice. Diagnostic procedures were carried out more frequently in hospital. Multivariate logistic regression showed that when data was controlled for patient characteristics, setting had a unique contribution to the differences found in use of drugs and procedures. Conclusion The data indicates a need for improvement in the hospital setting concerning recognising the need for palliative care, and ensuring a timely introduction of this approach.