BackgroundDementia is a progressive neurodegenerative condition characterized by declining functional and cognitive abilities. The quality of end of life care for people with dementia in the UK can be poor. Several difficult decisions may arise at the end of life, relating to the care of the person with dementia, for example management of comorbidities.ObjectiveTo explore difficulties in decision making for practitioners and family carers at the end of life for people with dementia.DesignQualitative methodology using focus groups and semi‐structured interviews and thematic analysis methods.Settings and participantsFormer (n=4) and current (n=6) family carers of people with experience of end of life care for a person with dementia were recruited from an English dementia voluntary group in 2015. A further 24 health and care professionals were purposively sampled to include a broad range of expertise and experience in dementia end of life care.ResultsFour key themes were identified as follows: challenges of delivering coherent care in dynamic systems; uncertainty amongst decision makers; internal and external conflict amongst decision makers; and a lack of preparedness for the end of life. Overarching difficulties such as poor communication, uncertainty and conflict about the needs of the person with dementia as well as the decision maker's own role can characterize decision making at the end of life.ConclusionsThis study suggests that decision making at the end of life for people with dementia has the potential to be improved. More planning earlier in the course of dementia with an on‐going approach to conversation may increase preparedness and family carers’ expectations of end of life.

ObjectivesTo explore junior doctors’ knowledge about and experiences of managing patients with medically unexplained symptoms (MUS) and to seek their recommendations for improved future training on this important topic about which they currently receive little education.DesignQualitative study using in-depth interviews analysed using the framework method.SettingParticipants were recruited from three North Thames London hospitals within the UK.ParticipantsTwenty-two junior doctors undertaking the UK foundation two-year training programme (FY1/FY2).ResultsThe junior doctors interviewed identified a significant gap in their training on the topic of MUS, particularly in relation to their awareness of the topic, the appropriate level of investigations, possible psychological comorbidities, the formulation of suitable explanations for patients’ symptoms and longer term management strategies. Many junior doctors expressed feelings of anxiety, frustration and a self-perceived lack of competency in this area, and spoke of over-investigating patients or avoiding patient contact altogether due to the challenging nature of MUS and a difficulty in managing the accompanying uncertainty. They also identified the negative attitudes of some senior clinicians and potential role models towards patients with MUS as a factor contributing to their own attitudes and management choices. Most reported a need for more training during the foundation years, and recommended interactive case-based group discussions with a focus on providing meaningful explanations to patients for their symptoms.ConclusionsThere is an urgent need to improve postgraduate training about the topics of MUS and avoiding over-investigation, as current training does not equip junior doctors with the necessary knowledge and skills to effectively and confidently manage patients in these areas. Training needs to focus on practical skill development to increase clinical knowledge in areas such as delivering suitable explanations, and to incorporate individual management strategies to help junior doctors tolerate the uncertainty associated with MUS.

BackgroundThe end of life for someone with dementia can present many challenges for practitioners; such as, providing care if there are swallowing difficulties. This study aimed to develop a toolkit of heuristics (rules-of-thumb) to aid practitioners making end-of-life care decisions for people with dementia.MethodsAn iterative co-design approach was adopted using a literature review and qualitative methods, including; 1) qualitative interviews and focus groups with family carers and 2) focus groups with health and care professionals. Family carers were recruited from a national charity, purposively sampling those with experience of end-of-life care for a person with dementia. Health and care professionals were purposively sampled to include a broad range of expertise including; general practitioners, palliative care specialists, and geriatricians. A co-design group was established consisting of health and social care experts and family carers, to synthesise the findings from the qualitative work and produce a toolkit of heuristics to be tested in practice.ResultsFour broad areas were identified as requiring complex decisions at the end of life; 1) eating/swallowing difficulties, 2) agitation/restlessness, 3) ending life-sustaining treatment, and 4) providing “routine care” at the end of life. Each topic became a heuristic consisting of rules arranged into flowcharts. Eating/swallowing difficulties have three rules; ensuring eating/swallowing difficulties do not come as a surprise, considering if the situation is an emergency, and considering ‘comfort feeding’ only versus time-trialled artificial feeding. Agitation/restlessness encourages a holistic approach, considering the environment, physical causes, and the carer’s wellbeing. Ending life-sustaining treatment supports practitioners through a process of considering the benefits of treatment versus quality-of-life and comfort. Finally, a heuristic on providing routine care such as bathing, prompts practitioners to consider adapting the delivery of care, in order to promote comfort and dignity at the end of life.ConclusionsThe heuristics are easy to use and remember, offering a novel approach to decision making for dementia end-of-life care. They have the potential to be used alongside existing end-of-life care recommendations, adding more readily available practical assistance. This is the first study to synthesise experience and existing evidence into easy-to-use heuristics for dementia end-of-life care.Electronic supplementary materialThe online version of this article (doi:10.1186/s12904-016-0146-z) contains supplementary material, which is available to authorized users.

Background Effective management of the spread of a novel infectious disease, such as the COVID-19 virus can be achieved through influencing people’s behavior to adopt preventive measures. The public’s perceptions and attitudes towards the virus, governmental guidance and preventive measures were unknown in Saudi Arabia. Objectives 1) investigate the public perception of COVID-19, anxiety level, the COVID-19 information sources sought, adoption of preventive measures, and ability and willingness to self-isolate during and post-lockdown periods of the COVID-19 pandemic in Saudi Arabia; 2) investigate socio-demographic factors associated with adoption of preventive measures against COVID-19 and self-isolation practices. Method Between April 22nd and June 21st 2020, Saudi adults aged ≥18 years voluntarily completed a self-administered web-based cross-sectional survey, distributed through social media (WhatsApp) and emails to representatives in education, health, business, and social sectors across all Saudi Arabian regions. The survey included questions on anxiety level, COVID-19 risk perceptions and adoption of preventive measures. Weighted percentages, Pearson’s chi-square tests, and multiple logistic regression were applied to evaluate associations between these factors and socio-demographic variables. Results A total of 2393 respondents completed the survey. A majority (74%) were worried about the COVID-19 outbreak and of those, 27% reported that it was likely that they would be infected with COVID-19; 16% believed it would be life-threatening or severe. However, only 11% of respondents reported high anxiety level. Adoption of hygiene practices and social distancing were lower among older (> 65 years) compared to younger (18–24 years) respondents (OR: 0.06; 95% CI: 0.01, 0.28 and OR 0.06; 95% CI: 0.01, 0.27 respectively). High percentages of respondents reported being able to (88%) and were willing to (82%) self-isolate. Those with the lowest gross household income and those with at least one flu symptom were less able and willing to self-isolate. A significant increase in levels of anxiety, perceived effectiveness of social distancing and hygiene practices was reported in the post-lockdown compared to during the lockdown. Conclusions The study reported high levels of adoption of preventive measures, willingness and perceived ability to self-isolate during the early phase of the pandemic. Vulnerable groups such as the elderly, and those with low socio-economic status reported lower adoption of preventive measures or ability and willingness to self-isolate. Tailored public health messages and interventions are needed to achieve high adherence to these preventive measures in these groups.