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Background: Advance care planning in dementia does not always happen. As dementia progresses, decisions are often left for family carers to make with professionals. Aim: To test the feasibility and acceptability of the delivery and use of a decision aid for family carers of people with severe dementia or towards the end-of-life. Design: Feasibility study using a before-after design of a paper-based decision aid with family carers of people with severe dementia or towards the end-of-life. Criteria for whether to progress to full evaluation included achieving: 70% recruitment rate of target of 30 people, and retention of 70% at 6 months. Outcome measures at baseline, 3 and 6 months, included: the Decisional Conflict Scale (DCS), Kessler Psychological Distress Scale (K10), EQ5D-5L and Satisfaction with Care at the End of Life (SWC-EOLD). Participants: Twenty-eight family carers were recruited (93% of target), 26 completed baseline assessment and 20 (71%) of those were followed-up at 6 months. Results: Almost all outcomes changed indicating improvement over 6 months. The DCS and K10 scores decreased indicating less decisional conflict and less psychological distress. The decision aid was acceptable, 25% found it very helpful and 55% a little helpful at 6 months. Conclusion: We met the success criteria demonstrating this study was feasible and acceptable to carers. Future research should test the effectiveness of the decision aid in a full scale evaluation. [ABSTRACT FROM AUTHOR]

Background: The efficacy of virtual reality for people living with a terminal illness is unclear. Aim: To determine the feasibility and effectiveness of virtual reality use within a palliative care setting. Design: Systematic review and meta-analysis. PROSPERO (CRD42021240395). Data sources: Medline, Embase, AMED, PsycINFO, CINAHL, Cochrane Central Register of Controlled Trials and Web of Science were searched from inception to March 2021. Search terms included 'virtual reality' and 'palliative care'. Eligibility: (1) adult (>18 years old) with a terminal illness (2) at least one virtual reality session and (3) feasibility data and/or at least one patient outcome reported. The ROB-2 and ROBINS tools assessed risk of bias. The Grading of Recommendations, Assessment, Development and Evaluations (GRADE) tool assessed the quality of the evidence. Standardised mean differences (Hedges's g) were calculated from the pre- and post-data. A DerSimonian-Laird random effects model meta-analysis was conducted. Results: Eight studies were included, of which five were in the meta-analysis. All studies had at least some concern for risk of bias. Virtual reality statistically significantly improved pain (p = 0.0363), tiredness (p = 0.0030), drowsiness (p = 0.0051), shortness of breath (p = 0.0284), depression (p = 0.0091) and psychological well-being (p = 0.0201). The quality of the evidence was graded as very low due to small sample sizes, non-randomisation methods and a lack of a comparator arm. Conclusions: Virtual reality in palliative care is feasible and acceptable. However, limited sample sizes and very low-quality studies mean that the efficacy of virtual reality needs further research. [ABSTRACT FROM AUTHOR]

Background: Dementia is a life limiting disease following a progressive trajectory. As carers often become key decision makers, their knowledge of dementia will have health implications for the person living with dementia as well as carer's psychological wellbeing. Aim: To explore how sociodemographic factors, health literacy and dementia experience influence family carers knowledge about dementia. Method: In this cross-sectional, mixed methods study, we interviewed 150 family carers and assessed their dementia knowledge using the Dementia Knowledge Assessment Scale (DKAS). Linear regression analyses were used to examine whether health literacy, previous experiences of dementia, support group attendance and sociodemographic characteristics predicted knowledge. Sixteen carers also completed qualitative interviews which explored unmet information needs. Transcripts and field notes were thematically analysed. Results: Most participants were partners (47%) or adult children (48%) and cared for someone with severe (32%) or moderate (43%) dementia. Mean DKAS scores were 34.8/50 (SD = 7.0, range = 17–48) reflecting 8/25 incorrect answers. Backwards elimination regression found greater dementia knowledge was associated with greater health literacy for appraising information (coef 3.48, 95% CI (1.38, 5.58); p = 0.001) and more years of education (coef 0.39, 95% CI (0.12, 0.65); p = 0.004). Although not significant, knowledge was slightly lower in those who attended a support group, and a trend was found between ability to understand health information and knowledge. Only 39% accurately identified dementia as life shortening, indicating notable gaps in knowledge. Four qualitative themes were identified; arm yourself with information, ability to steer through information, other experience of dementia can be helpful and the importance of relationships with health care professionals. Conclusions: In an information age, vast amounts of information are available, but this can bring difficulties. Carers with more years of education and higher health literacy knew more about dementia. Professionals should consider how carers with lower health literacy can be supported through provision of timely, relevant information. [ABSTRACT FROM AUTHOR]

Background: The Surprise Question ('Would I be surprised if this patient died within 12 months?') identifies patients in the last year of life. It is unclear if 'surprised' means the same for each clinician, and whether their responses are internally consistent. Aim: To determine the consistency with which the Surprise Question is used. Design: A cross-sectional online study of participants located in Belgium, Germany, Italy, The Netherlands, Switzerland and UK. Participants completed 20 hypothetical patient summaries ('vignettes'). Primary outcome measure: continuous estimate of probability of death within 12 months (0% [certain survival]–100% [certain death]). A threshold (probability estimate above which Surprise Question responses were consistently 'no') and an inconsistency range (range of probability estimates where respondents vacillated between responses) were calculated. Univariable and multivariable linear regression explored differences in consistency. Trial registration: NCT03697213. Setting/participants: Registered General Practitioners (GPs). Of the 307 GPs who started the study, 250 completed 15 or more vignettes. Results: Participants had a consistency threshold of 49.8% (SD 22.7) and inconsistency range of 17% (SD 22.4). Italy had a significantly higher threshold than other countries (p = 0.002). There was also a difference in threshold levels depending on age of clinician, for every yearly increase, participants had a higher threshold. There was no difference in inconsistency between countries (p = 0.53). Conclusions: There is variation between clinicians regarding the use of the Surprise Question. Over half of GPs were not internally consistent in their responses to the Surprise Question. Future research with standardised terms and real patients is warranted. [ABSTRACT FROM AUTHOR]

Background: Aromatherapy, massage and reflexology are widely used in palliative care. Despite this, there are questions about their suitability for inclusion in clinical guidelines. The need to understand their benefits is a public priority, especially in light of funding pressures. Aim: To synthesise current evidence on the effectiveness of aromatherapy, massage and reflexology in people with palliative care needs. Design: A systematic review of randomised controlled trials (PROSPERO CRD42017081409) was undertaken following international standards including Cochrane guidelines. The quality of trials and their pooled evidence were appraised. Primary outcomes on effect were anxiety, pain and quality-of-life. Data sources: Eight citation databases and three trial registries were searched to June 2018. Results: Twenty-two trials, involving 1956 participants were identified. Compared with a control, four evaluated aromatherapy, eight massage and six reflexology. A further four evaluated massage compared with aromatherapy. Trials were at an unclear risk of bias. Many had small samples. Heterogeneity prevented meta-analysis. In comparison with usual care, another therapy or an active control, evidence on the effectiveness of massage and aromatherapy in reducing anxiety, pain and improving quality-of-life was inconclusive. There was some evidence (low quality) that compared to an active control, reflexology reduced pain. Conclusions: This review identified a relatively large number of trials, but with poor and heterogeneous evidence. New clinical recommendations cannot be made based on current evidence. To help provide more definitive trial findings, it may be useful first to understand more about the best way to measure the effectiveness of these therapies in palliative care. [ABSTRACT FROM AUTHOR]

Background: Increasing number of people are dying with advanced dementia. Comfort and quality of life are key goals of care. Aims: To describe (1) physical and psychological symptoms, (2) health and social care service utilisation and (3) care at end of life in people with advanced dementia. Design: 9-month prospective cohort study. Setting and participants: Greater London, England, people with advanced dementia (Functional Assessment Staging Scale 6e and above) from 14 nursing homes or their own homes. Main outcome measures: At study entry and monthly: prescriptions, Charlson Comorbidity Index, pressure sore risk/severity (Waterlow Scale/Stirling Scale, respectively), acute medical events, pain (Pain Assessment in Advanced Dementia), neuropsychiatric symptoms (Neuropsychiatric Inventory), quality of life (Quality of Life in Late-Stage Dementia Scale), resource use (Resource Utilization in Dementia Questionnaire and Client Services Receipt Inventory), presence/type of advance care plans, interventions, mortality, place of death and comfort (Symptom Management at End of Life in Dementia Scale). Results: Of 159 potential participants, 85 were recruited (62% alive at end of follow-up). Pain (11% at rest, 61% on movement) and significant agitation (54%) were common and persistent. Aspiration, dyspnoea, septicaemia and pneumonia were more frequent in those who died. In total, 76% had 'do not resuscitate' statements, less than 40% advance care plans. Most received primary care visits, there was little input from geriatrics or mental health but contact with emergency paramedics was common. Conclusion: People with advanced dementia lived with distressing symptoms. Service provision was not tailored to their needs. Longitudinal multidisciplinary input could optimise symptom control and quality of life. [ABSTRACT FROM AUTHOR]

Background: Researchers report difficulties in conducting research with children and young people with life-limiting conditions or life-threatening illnesses and their families. Recruitment is challenged by barriers including ethical, logistical and clinical considerations. Aim: To explore how children and young people (aged 0-25 years) with life-limiting conditions or life-threatening illnesses and their families were identified, invited and consented to research published in the last 5 years. Design: Systematic review. Data sources: MEDLINE, PsycINFO, Web of Science, Sciences Citation Index and SCOPUS were searched for original English language research published between 2009 and 2014, recruiting children and young people with life-limiting conditions or lifethreatening illness and their families. Results: A total of 215 studies - 152 qualitative, 54 quantitative and 9 mixed methods - were included. Limited recruitment information but a range of strategies and difficulties were provided. The proportion of eligible participants from those screened could not be calculated in 80% of studies. Recruitment rates could not be calculated in 77%. A total of 31% of studies recruited less than 50% of eligible participants. Reasons given for non-invitation included missing clinical or contact data, or clinician judgements of participant unsuitability. Reasons for non-participation included lack of interest and participants' perceptions of potential burdens. Conclusion: All stages of recruitment were under reported. Transparency in reporting of participant identification, invitation and consent is needed to enable researchers to understand research implications, bias risk and to whom results apply. Research is needed to explore why consenting participants decide to take part or not and their experiences of research recruitment. [ABSTRACT FROM AUTHOR]

Background: The prevalence of dementia is rising worldwide and many people will die with the disease. Symptoms towards the end of life may be inadequately managed and informal and professional carers poorly supported. There are few evidence-based interventions to improve end-of-life care in advanced dementia. Aim: To develop an integrated, whole systems, evidence-based intervention that is pragmatic and feasible to improve end-of-life care for people with advanced dementia and support those close to them. Design: A realist-based approach in which qualitative and quantitative data assisted the development of statements. These were incorporated into the RAND/UCLA appropriateness method to achieve consensus on intervention components. Components were mapped to underlying theory of whole systems change and the intervention described in a detailed manual. Setting/participants: Data were collected from people with dementia, carers and health and social care professionals in England, from expert opinion and existing literature. Professional stakeholders in all four countries of the United Kingdom contributed to the RAND/UCLA appropriateness method process. Results: A total of 29 statements were agreed and mapped to individual, group, organisational and economic/political levels of healthcare systems. The resulting main intervention components are as follows: (1) influencing local service organisation through facilitation of integrated multi-disciplinary care, (2) providing training and support for formal and informal carers and (3) influencing local healthcare commissioning and priorities of service providers. Conclusion: Use of in-depth data, consensus methods and theoretical understanding of the intervention components produced an evidence-based intervention for further testing in end-of-life care in advanced dementia. [ABSTRACT FROM AUTHOR]