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Background: Acute hospital wards can be difficult places for many people living with dementia. Promoting comfort and wellbeing can be challenging in this environment. There is little evidence‐based support for professionals working on acute care wards on how to respond to distress and maximise comfort and wellbeing among patients living with dementia. Objectives: Our overall aim was to codesign an evidence‐based easy‐to‐use heuristic decision‐support framework, which was acceptable and practical but acknowledges the complex and acute nature of caring for patients with dementia in the hospital. This paper presents the development process and resulting framework. Methods: A codesign study was informed by data from (1) a literature review of the care and management of people living with dementia in acute hospitals; (2) a cohort study of comfort and discomfort in people with dementia in acute hospitals; and (3) interviews with family carers and health care professionals. We synthesised evidence from these data sources and presented to key stakeholders through codesign meetings and workshops to produce our decision‐support framework. Results: The framework consists of a series of flowcharts and operates using a three‐stage process of: (1) assess comfort/discomfort; (2) consider causes of discomfort; and (3) address patient needs to manage the discomfort. Conclusion: Working with key stakeholders, synthesising diverse quantitative and qualitative evidence to build a clinical framework is a feasible approach to help address the needs of patients living with dementia in an acute hospital setting. The result is a framework which is now ready for evaluation and implementation. Patient and Public Contribution: We worked closely with people living with dementia and family carers throughout this study, including the development of the study protocol with input on study development and design, through to inclusion in stakeholder workshops and codesign of the decision support framework. [ABSTRACT FROM AUTHOR]

Background: Prognostic information is important for patients with cancer, their families, and clinicians. In practice, survival predictions are made by clinicians based on their experience, judgement, and intuition. Previous studies have reported that clinicians' survival predictions are often inaccurate. This study reports a secondary analysis of data from the Prognosis in Palliative care Study II (PiPS2) to assess the accuracy of survival estimates made by doctors and nurses. Methods and findings: Adult patients (n = 1833) with incurable, locally advanced or metastatic cancer, recently referred to palliative care services (community teams, hospital teams, and inpatient palliative care units) were recruited. Doctors (n = 431) and nurses (n = 777) provided independent prognostic predictions and an agreed multi-professional prediction for each patient. Clinicians provided prognostic estimates in several formats including predictions about length of survival and probability of surviving to certain time points. There was a minimum follow up of three months or until death (whichever was sooner; maximum follow-up 783 days). Agreed multi-professional predictions about whether patients would survive for days, weeks or months+ were accurate on 61.9% of occasions. The positive predictive value of clinicians' predictions about imminent death (within one week) was 77% for doctors and 79% for nurses. The sensitivity of these predictions was low (37% and 35% respectively). Specific predictions about how many weeks patients would survive were not very accurate but showed good discrimination (patients estimated to survive for shorted periods had worse outcomes). The accuracy of clinicians' probabilistic predictions (assessed using Brier's scores) was consistently better than chance, improved with proximity to death and showed good discrimination between groups of patients with different survival outcomes. Conclusions: Using a variety of different approaches, this study found that clinicians predictions of survival show good discrimination and accuracy, regardless of whether the predictions are about how long or how likely patients are to survive. Accuracy improves with proximity to death. Although the positive predictive value of estimates of imminent death are relatively high, the sensitivity of such predictions is relatively low. Despite limitations, the clinical prediction of survival should remain the benchmark against which any innovations in prognostication are judged. Study registration: ISRCTN13688211. http://www.isrctn.com/ISRCTN13688211. [ABSTRACT FROM AUTHOR]

Objectives: To (1) describe the prescription and administration of regular and 'as required' (pro re nata [PRN]) analgesics in English care homes, (2) investigate individual and care home factors associated with analgesic use. Methods: We collected data (2014–2016) at 0‐, 4‐, and 12‐months nested in a longitudinal cohort study of 86 English care homes about residents with diagnosed or probable dementia. We describe analgesics prescribed as regular or PRN medication, by class, and PRN administration. We explored individual differences (sociodemographic; dementia severity [Clinical Dementia Rating]), and care home differences (type; ownership; number of beds; dementia‐registered/specialist; Care Quality Commission rating) in prescription and administration using multilevel regression models. Results: Data were available for 1483 residents. At baseline, 967 residents (67.9%) were prescribed analgesics: 426 residents (28.7%) prescribed regular analgesics and 670 (45.2%) prescribed PRN. Paracetamol was the most prescribed analgesic (56.7%), with PRN prescriptions more common than regular (39.7% vs. 16.6%). Across all study visits, 344 residents (mean = 41.9%) with a PRN prescription did not receive any analgesic in the 2 weeks prior to data collection. Male residents and those with severe dementia received fewer analgesics. Care homes differences in PRN administration were not explained by the modelled variables. Conclusions: Pain management in English care homes largely relies on PRN paracetamol that is frequently prescribed but infrequently administered. Care homes differ in how often they administer PRN analgesics. Some care home residents particularly those with more severe dementia are likely to have untreated pain. Key points: English care home residents with dementia are frequently prescribed pro re nata (PRN) analgesics but these are infrequently administered.Some groups of residents (male, more severe dementia) receive fewer analgesics and may be at risk of undertreatment for pain.Before prescribing pain relief, clinicians need to consider the risk that PRN analgesics may not be administered.Pragmatic pain management guidelines specifically for care home residents with dementia and improving medication documentation may optimise analgesic use. [ABSTRACT FROM AUTHOR]

Background: Anticholinergic burden (ACB) is associated with an increased risk of delirium in the older population outside of the acute hospital setting. In acute settings, delirium is associated with increased mortality, and this association is greater with full syndromal delirium (FSD) than with subsyndromal delirium (SSD). Little is known about the impact of ACB on delirium prevalence or subtype in hospitalized older adults or the impact on mortality in this population. Objectives: Our objectives were to determine whether ACB moderates associations between the subtype of delirium experienced by hospitalized older adults and to explore factors (including ACB) that might moderate consequent associations between delirium and mortality in hospital inpatients. Methods: We conducted a retrospective analysis of a cohort of 784 older adults with unplanned admission to a North London acute medical unit between June and December 2007. Univariate regression analyses were performed to explore associations between ACB, as represented by the Anticholinergic Burden Scale (ACBS), delirium subtype (FSD vs. SSD), and mortality. Results: The mean age of the sample was 83 ± standard deviation (SD) 7.4 years, and the majority of patients were female (59%), lived in their own homes (71%), were without dementia (75%), and died between hospital admission and the end of the 2-year follow-up period (59%). Mean length of admission was 13.2 ± 14.4 days. Prescription data revealed an ACBS score of 1 in 26% of the cohort, of 2 in 12%, and of ≥ 3 in 16%. The mean total ACBS score for the cohort was 1.1 ± 1.4 (range 0–9). Patients with high ACB on admission were more likely to have severe dementia, to have multiple comorbidities, and to live in residential care. Higher ACB was not associated with delirium of either subtype in hospitalized older adults. Delirium itself was associated with increased mortality, and greater associations were seen in FSD (hazard ratio [HR] 2.27; 95% confidence interval [CI] 1.70–3.01) than in SSD (HR 1.58; 95% CI 1.2–2.09); however, ACB had no impact on this relationship. Conclusions: ACB was not found to be associated with increased delirium of either subtype or to have a demonstrable impact on mortality in delirium. Prior suggestions of links between ACB and mortality in similar populations may be mediated by higher levels of functional dependence, greater levels of residential home residence, or an increased prevalence of dementia in this population. [ABSTRACT FROM AUTHOR]

Background: Palliative Care Day Services (PCDS) offer supportive care to people with advanced, progressive illness who may be approaching the end of life. Despite the growth of PCDS in recent years, evidence of their costs and effects is scarce. It is important to establish the value of such services so that health and care decision-makers can make evidence-based resource allocation decisions. This study examines and estimates the costs and effects of PCDS with different service configurations in three centres across the UK in England, Scotland and Northern Ireland. Methods: People who had been referred to PCDS were recruited between June 2017 and September 2018. A pragmatic before-and-after descriptive cohort study design analysed data on costs and outcomes. Data on costs were collected on health and care use in the 4 weeks preceding PCDS attendance using adapted versions of the Client Service Receipt Inventory (CSRI). Outcomes, cost per attendee/day and volunteer contribution to PCDS were also estimated. Outcomes included quality of life (MQOL-E), health status (EQ-5D-5L) and capability wellbeing (ICECAP-SCM). Results: Thirty-eight attendees were recruited and provided data at baseline and 4 weeks (centre 1: n = 8; centre 2: n = 8, centre 3: n = 22). The cost per attendee/day ranged from £121–£190 (excluding volunteer contribution) to £172–£264 (including volunteer contribution) across the three sites. Volunteering constituted between 28 and 38% of the total cost of PCDS provision. There was no significant mean change at 4 week follow-up from baseline for health and care costs (centre 1: £570, centre 2: -£1127, centre 3: £65), or outcomes: MQOL-E (centre 1: − 0.48, centre 2: 0.01, centre 3: 0.24); EQ-5D-5L (centre 1: 0.05, centre 2: 0.03, centre 3: − 0.03) and ICECAP-SCM (centre 1:0.00, centre 2: − 0.01, centre 3: 0.03). Centre costs variation is almost double per attendee when attendance rates are held constant in scenario analysis. Conclusions: This study highlights the contribution made by volunteers to PCDS provision. There is insufficient evidence on whether outcomes improved, or costs were reduced, in the three different service configurations for PCDS. We suggest how future research may overcome some of the challenges we encountered, to better address questions of cost-effectiveness in PCDS. [ABSTRACT FROM AUTHOR]

Background: As both epilepsy and challenging behaviour are highly prevalent in adults with intellectual disability (ID) it is important to explore any potential relationships between the two to inform patient care. The aim of the present study was to investigate the relationship between epilepsy factors and challenging behaviour in adults with ID. Method: The sample was drawn from a clinical trial cohort (n = 246), with all participants displaying challenging behaviour across the range of ID. We described sociodemographic and clinical status (seizure types, seizure frequency and drug burden) in 70 participants with epilepsy (EP). We investigated differences in and predictors of challenging behaviour and mental ill-health, measured by the Aberrant Behaviour Checklist-Community and the Mini Psychiatric Assessment Schedule for Adults with Developmental Disabilities respectively, between participants with and without epilepsy (NEP). Results: More male participants were identified with epilepsy (EP = 76% and NEP = 61%, p =.026) and the EP group had lower adaptive behaviour scores than their NEP counterparts (Mean (SD) EP = 44.4 (24.1), NEP = 51.7 (25.0), p =.04). EP participants showed significantly less lethargy as measured by the Aberrant Behaviour Checklist-Community than NEP participants (Mean (SD) EP = 11.9 (7.4) and NEP = 15.1 (9.9); t-test p =.02). Younger age and poorer adaptive functioning were associated with challenging behaviour (beta=−.520, p <.001 and beta=−0.30, p <.001, respectively). Conclusions: These findings indicate that epilepsy does not appear to be associated with challenging behaviour in adults with ID. Therefore, while management of epilepsy is very important in a clinical context, it is essential that professionals should further elucidate reasons for the presentation of such behaviours in order to provide timely and targeted interventions. [ABSTRACT FROM AUTHOR]

Background Pain and delirium are common in people with dementia admitted to hospitals. These are often under-diagnosed and under-treated. Pain is implicated as a cause of delirium but this association has not been investigated in this setting. Objective To investigate the relationship between pain and delirium in people with dementia, on admission and throughout a hospital admission. Design Exploratory secondary analysis of observational prospective longitudinal cohort data. Setting Two acute hospitals in the UK. Methodology Two-hundred and thirty participants aged ≥70 years were assessed for dementia severity, delirium ((Confusion Assessment Method (CAM), pain (Pain Assessment in Advanced Dementia (PAINAD)) scale and prescription of analgesics. Logistic and linear regressions explored the relationship between pain and delirium using cross-sectional data. Results Pain at rest developed in 49%, and pain during activity for 26% of participants during their inpatient stay. Incident delirium developed in 15%, of participants, and 42% remained delirious for at least two assessments. Of the 35% of participants who were delirious and unable to self-report pain, 33% of these participants experienced pain at rest, and 56 experienced pain during activity. The odds of being delirious were 3.26 times higher in participants experiencing pain at rest (95% Confidence Interval 1.03–10.25, P = 0.044). Conclusion An association between pain at rest and delirium was found, suggesting pain may be a risk factor for delirium. Since pain and delirium were found to persist and develop during an inpatient stay, regular pain and delirium assessments are required to manage pain and delirium effectively. [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]

Objectives: The Cohen-Mansfield Agitation Inventory (CMAI; (Cohen-Mansfield and Kerin, 1986)) is a well-known tool for assessing agitated behaviours in people with dementia who reside in long-term care. No studies have evaluated the psychometric qualities and factor structure of the CMAI in acute general hospitals, a setting where people with demand may become agitated.Method: Longitudinal study investigating pain, agitation and behavioural problems in 230 people with dementia admitted to acute general hospitals in 2011-2012. Cohen-Mansfield Agitation Inventory was completed as part of a battery of assessments including PAINAD to measure pain.Results: A nine-item two-factor model of aggressive and nonaggressive behaviours proved to be the best-fitting measurement model in this sample, (χ2  = 96.3, df = 26, p<0.001; BIC [Bayesian Information Criterion] = 4593.06, CFI [Comparative Fit Index] = 0.884, TLI [Tucker Lewis Index] = 0.839, RMSEA [Root Mean Square Error of the Approximation] = 0.108). Although similar to the original factor structure, the new model resulted in the elimination of item 13 (screaming). Validity was confirmed with the shortened CMAI showing similar associations with pain as the original version of the CMAI, in particular the link between aggressive behaviours and pain.Conclusion: The factor structure of the CMAI was broadly consistent with the original solution although a large number of items were removed. Scales reflecting physical and verbal aggression were combined to form an Aggressive factor, and physical and verbal nonaggressive behaviours were combined to form the Nonaggressive factor. A shorter, more concise version of the CMAI was developed for use in acute general hospital settings. Copyright © 2017 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Background: Habit-interventions are designed to promote the automaticity of healthy behaviours and may also enhance self-regulatory skills during the habit-formation process. A recent trial of habit-based advice for weight loss (10 Top Tips; 10TT), found that patients allocated to 10TT lost significantly more weight over 3 months than those allocated to usual care, and reported greater increases in automaticity for the target behaviours. The current study aimed to test the hypothesis that i) 10TT increased self-regulatory skills more than usual care, and ii) that self-regulatory skills and automaticity changes mediated the effect of 10TT on weight loss. Methods: 537 obese patients from 14 primary care practices in the UK were randomized to receive 10TT or usual care. Patients in the 10TT group received a leaflet containing tips for weight loss and healthy habits formation, a self-monitoring log book and a wallet-sized shopping guide on how to read food labels. Patients were weighed and completed validated questionnaires for self-regulation and automaticity at baseline and 3-month follow-up. Within-group and Between-group effects were explored using Paired T-test and ANCOVA, respectively. Mediation was assessed using bootstrapping to estimate indirect effects and the sobel test. Results: Over 3 months patients who were given 10TT reported greater increases in self-regulatory skills (Mean difference: .08; 95% CI .01; .15) than those who received usual care. Changes in self-regulatory skills and automaticity over 3 months mediated the effect of the intervention on weight loss (β = .52, 95% Bias Corrected CI .17; .91). Conclusions: As hypothesised, 10TT enhanced self-regulatory skills and changes in self-regulatory skills and automaticity mediated the effect of the intervention on weight loss. This supports the proposition that self-regulatory training and habit formation are important features of weight loss interventions. Trial registration: This study was prospectively registered with the International Standard Randomised Controlled Trials () on 26 September 2011. [ABSTRACT FROM AUTHOR]

Background: Many studies have examined the mental health of carers of people with dementia. Few have examined their experiences in the advanced stages of disease and into bereavement. We aimed to understand the experiences of carers during advanced dementia exploring the links between mental health and experiences of end of life care.Methods: Mixed methods longitudinal cohort study. Thirty-five family carers of people with advanced dementia (6 at home, 29 in care homes) were recruited and assessed monthly for up to nine months or until the person with dementia died, then at two and seven months into bereavement. Assessments included: Hospital Anxiety and Depression Scale, Short Form 12 health-related quality of life, 22-item Zarit Burden Interview, Brief Coping Orientation to Problems Experienced, Inventory of Complicated Grief and Satisfaction with Care at End of Life in Dementia. Subsequently, 12 carers (34%) were bereaved and 12 undertook a qualitative interview two months after death; these data were analysed thematically. We analysed quantitative and qualitative data independently and then merged findings at the point of interpretation.Results: At study entry psychological distress was high; 26% reached caseness for depression and 41% for anxiety and median complicated grief scores were 27 [IQR 22-37] indicating that on average 11 of the 16 grief symptoms occurred at least monthly. Physical health reflected population norms (mean = 50) and median burden scores were 17 [IQR 9-30]. Three qualitative themes were identified: the importance of relationships with care services, understanding of the progression of dementia, and emotional responses to advanced dementia. An overarching theme tying these together was the carer's ability to control and influence end of life care.Conclusions: While carers report high levels of psychological distress during advanced dementia, the experience of end of life care in dementia may be amenable to change with the provision of sensitive and timely information about the natural progression of dementia. Regular health status updates and end of life discussions can help families understand dementia progression and prepare for end of life. The extent to which our findings reflect practice across the UK or internationally warrants further investigation. [ABSTRACT FROM AUTHOR]

Background: More accurate methods of prognostication are likely to lead to improvements in the quality of care of patients approaching the ends of their lives. The Prognosis in Palliative care Scales (PiPS) are prognostic models of survival. The scores are calculated using simple clinical data and observations. There are two separate PiPS models; PiPS-A for patients without blood test results and PiPS-B for patients with blood test results. Both models predict whether a patient is likely to live for “days”, “weeks” or “months” and have been shown to perform as well as clinicians’ estimates of survival. PiPS-B has also been found to be significantly better than doctors’ estimates of survival. We report here a protocol for the validation of PiPS and for the evaluation of the accuracy of other prognostic tools in a new, larger cohort of patients with advanced cancer. Methods: This is a national, multi-centre, prospective, observational cohort study, aiming to recruit 1778 patients via palliative care services across England and Wales. Eligible patients have advanced, incurable cancer and have recently been referred to palliative care services. Patients with or without capacity are included in the study. The primary outcome is the accuracy of PiPS predictions and the difference in accuracy between these predictions and the clinicians’ estimates of survival; with PiPS-B being the main model of interest. The secondary outcomes include the accuracy of predictions by the Palliative Prognostic Index (PPI), Palliative Performance Scale (PPS), Palliative Prognostic score (PaP) and the Feliu Prognostic Nomogram (FPN) compared with actual patient survival and clinicians’ estimates of survival. A nested qualitative sub-study using face-to-face interviews with patients, carers and clinicians is also being undertaken to assess the acceptability of the prognostic models and to identify barriers and facilitators to clinical use. Discussion: The study closed to recruitment at the end of April 2018 having exceeded the required sample size of 1778 patients. The qualitative sub-study is nearing completion. This demonstrates the feasibility of recruiting large numbers of participants to a prospective palliative care study. Trial registration: ISRCTN13688211 (registration date: 28/06/2016). [ABSTRACT FROM AUTHOR]

Pain is underdetected and undertreated in people with dementia. We aimed to investigate the prevalence of pain in people with dementia admitted to general hospitals and explore the association between pain and behavioural and psychiatric symptoms of dementia (BPSD). We conducted a longitudinal cohort study of 230 people, aged above 70, with dementia and unplanned medical admissions to 2 UK hospitals. Participants were assessed at baseline and every 4 days for self-reported pain (yes/no question and FACES scale) and observed pain (Pain Assessment in Advanced Dementia scale [PAINAD]) atmovement and at rest, for agitation (Cohen-Mansfield Agitating Inventory [CMAI]) and BPSD (Behavioural Pathology in Alzheimer Disease Scale [BEHAVE-AD]). On admission, 27% of participants self-reported pain rising to 39% on at least 1 occasion during admission. Half of them were able to complete the FACES scale, this proportion decreasing with more severe dementia. Using the PAINAD,19%had pain at rest and 57%had pain on movement on at least 1 occasion (in 16%, this was persistent throughout the admission). In controlled analyses, pain was not associated with CMAI scores but was strongly associated with total BEHAVE-AD scores, both when pain was assessed on movement (α = 0.20, 95% confidence interval [CI] = 0.07-0.32, P = 0.002) and at rest (β = 0.41, 95% CI = 0.14-0.69, P = 0.003). The association was the strongest for aggression and anxiety. Pain was common in people with dementia admitted to the acute hospital and associated with BPSD. Improved pain management may reduce distressing behaviours and improve the quality of hospital care for people with dementia. [ABSTRACT FROM AUTHOR]