Correction to: The Edinburgh Consensus: preparing for the advent of disease-modifying therapies for Alzheimer's disease.

Since the publication of this article [1], it has come to the attention of the authors that information for one of the authors was not included in the competing interests section. Craig Richie has declared potential competing interests with the following companies; Janssen, Eisai, Pfizer, Eli Lilly, Roche Diagnostics, Boeringher Ingleheim, Novartis, AC Immune, Ixico, Aridhia, Amgen, Berry Consultants, Lundbeck, Sanofi, Quintiles (IQVIA) and Takeda. The full competing interests section for this article can be found below

Neighbourhoods & Dementia Programme Study:Core Outcome Set for people living with dementia

Background: The emergence of core outcome sets (COS) - a list of core outcomes which should be measured and reported as a minimum across all relevant effectiveness trials - addresses the lack of consistency in outcomes and measurement instruments that are used across studies and subsequent obstruction of robust meta-analysis and comparisons for effectiveness (1, 2). For example, in the field of dementia, a recent review has found over forty quality of life measurement instruments (3). The objective of work programme 3 of the wider Neighbourhoods and Dementia programme (funded by the ESRC/NIHR under key commitment 12 of the first Prime Minister’s Challenge on dementia), is to develop a COS for non-pharmacological health and social care community-based interventions for people living with dementia. The scope and focus of this COS reflects the widely acknowledged need to further develop community-based health and social programmes for people living with dementia (4, 5). This study addresses to research questions: 1) Which outcomes should be measured from the perspective of people with dementia living at home, care partners, health and social care professionals, researchers, policy makers/ service commissioners? 2) How should such outcomes be measured? (6): Method: We answer these questions through the following methods: 1) qualitative interviews/focus groups (including key stakeholders: people living with dementia, care partners, health and social care professionals, researchers and policy makers) and literature review; 2) a Delphi survey (with key stakeholders and co-designed with people living with dementia (7)) and consensus workshop and 3) systematic review of existing outcome tools. Results: This presentation will briefly highlight how we answered the first research question and then detail the findings relating to the second research question Which outcomes should be measured? Fifty-four outcomes were initially identified through a process of extracting outcomes from existing trials, key sources and qualitative work with stakeholders in phase 1. In a two-round Delphi survey (round 1 n=288, round 2 n=246 – 85% response rate) with key stakeholders, consensus for inclusion in the COS was attained for 10 outcomes. Three additional outcomes were added at a consensus workshop with key stakeholders (n=20). The final thirteen outcomes in the COS are across four domains – self-managing dementia symptoms, quality of life, friendly neighbourhood and home, independence. How should such outcomes be measured? We will then describe our systematic review (including an assessment of psychometric properties) which seeks to identify existing outcome measures that map onto the 13 outcomes identified in the COS. Implications: This study has developed a set of outcomes as a tool-kit that can be routinely used in the evaluation of non-pharmacological health and social support for people with dementia living at home. We recommend thirteen outcomes in the COS that need to be measured as a minimum in trials of community-based health and social interventions for people living with dementia. Furthermore, this consensus on what outcomes are regarded as core is also capable of informing the content and delivery of health and social programmes. As such, the COS and this study is of interest to researchers, trialists and policy makers including those who plan and commission services. The gaps in outcome measures will also help to set the research agenda for the development of relevant measures in the future

What is important to people living with dementia at home?:A core outcome set for community interventions.

Background High variability in outcomes in dementia care trials impedes comparisons of effectiveness and makes the interpretation of results difficult. One way for trialists to address these problems is to use and report a core outcome set (COS) - a list of core outcomes which should be measured and reported as a minimum across all relevant effectiveness trials. Consultation with people living with dementia regarding the outcomes that matter most would also help to avoid research waste associated with poor outcome selection. The key aim of this study is to establish an agreed standardised core outcome set (COS) for use when evaluating non-pharmacological health and social care interventions for people with dementia living at home. Methods We developed a modified two-round 54 item Delphi survey to attain consensus on core outcomes from key stakeholders from the UK. We finalised the core outcome set in a face-to-face consensus meeting in 2018. Results Of the 288 participants who completed round 1 (21 people living with dementia, 58 care partners, 137 relevant health and social care professionals, 60 researchers, 12 policy makers) 246 completed round 2 (85% response rate). Ten items met the inclusion criteria for the COS. From 24 items that were discussed by participants attending the consensus meeting a further three items were voted in. Respondents living with dementia who rated these 13 outcomes as very important in the second round of the Delphi ranged from 50% to 95%. Conclusions Providing there are adequate measures, the 13 outcome items should be included and reported in trials on the effectiveness of non-pharmacological interventions and community-based interventions for people with dementia living at home and in their neighbourhood. An additional abstract reports a systematic review of existing outcome measurement instruments so that we can recommend ‘how to measure’ the 13 outcome items

Variation in dementia training provided to hospital staff in England

There are approximately 850,000 people living with dementia in the UK. Around 70 percent of acute hospital beds are occupied by older people, approximately 40 percent of whom have dementia. Improving the quality of care in hospitals is a key priority within national dementia strategies. There is evidence to suggest that dementia training approaches are highly variable. Limited research has been conducted to evaluate dementia training packages, and where evaluation takes place this often focuses on immediate, on-the-day training feedback and effects. We will present early findings from our structured Hospital Organisational Survey sent to hospitals in England (n= approx. 193). The survey recruitment is researcher-led involving telephoning and identifying dementia leads in each hospital. The survey will enable us to explore variations in 1) the dementia training strategy within each hospital, 2) the presence; timing, characteristics and format of training programmes; skill mix and mode of delivery; frequency, duration and intensity of training; staff groups in receipt of training; quality of training; resources utilised in developing and/or provision of dementia training, including costs and number of staff trained. 3) what other initiatives are implemented e.g. having a dementia champion, active participation in Butterfly scheme, Dementia Friends, carers allowed on wards at meal time. We aim to use existing data, such as Hospital Episode Statistics, alongside a further staff level survey to assess the variation in dementia training, health service outcome/process measures (e.g. length of stay and emergency re-admissions) and staff outcomes (e.g. confidence and knowledge). From this study we will identify specific recommendations and guidance about which elements of the training packages are potentially more effective and appropriate for use in acute hospital settings. To help to promote the study, additional endorsements were sought from a number of key stakeholders to facilitate this research, including Dementia Action Alliance and the Royal College of Nursing

Developing the evidence base for evaluating dementia training in NHS hospitals (DEMTRAIN):A mixed method study

There are approximately 850,000 people living with dementia in the UK. Around 70 percent of acute hospital beds are occupied by older people, approximately 40 percent of whom have dementia. Evidence suggests that dementia training approaches and initiatives are highly variable. Improving the quality of care in hospitals is a key priority within national dementia strategies. There is limited research evaluating dementia training packages, and where evaluation takes place this often focuses on immediate, on-the-day training feedback and effects. We will adopt a number of different methods. We aim to use existing data, such as Hospital Episode Statistics, alongside two surveys (hospital and staff level) to map and assess the variation in dementia training, in health service outcome/process measures (e.g. length of stay and emergency re-admissions) and staff outcomes (e.g. confidence and knowledge). The hospital survey has support from key partners, including Professor Alistair Burns and Professor Martin Vernon. We aim to recruit up to193 acute hospitals in England for the hospital level survey. At the staff level, we will recruit up to 30 staff members per hospital, from a random sample of 24 hospitals. We will also explore the cost effectiveness of training packages and carry out an in-depth case study of up to 8 hospitals. We aim to identify specific recommendations and guidance about which elements of the training packages are potentially more effective and appropriate for use in acute hospital settings. Our poster will outline the study design, and next phase of administering the England-wide hospital and staff level survey. We will soon begin the distribution of the hospital level survey. If you would like to know more about this or get involved, please contact: [email protected]. You can chat with a member of the research team, Faraz Ahmed, who will be presenting this poster on 3rd November

Developing a programme theory for dementia training in hospitals:Why we need a critical interpretive synthesis review of current evidence-base?

Background: There are approximately 850,000 people living with dementia in the UK, with costs estimated currently to be £26 billion a year. Improving the quality of care in hospitals has continued to be one of the key priorities within national dementia strategies. Around 70% of acute hospital beds are occupied by older people, approximately 40% of whom have dementia. Although the field of dementia care training is complex, developing and dynamic there are few robust evaluations. It is neither possible nor desirable to specify a-priori precise review questions, without running the risk of severely limiting the amount of evidence required to address a review question. We want to understand much more about the broader range of structures and dementia initiatives within individual hospitals within the current context of dementia care and awareness training provided in acute NHS hospitals. Methods: The aims of this critical interpretive synthesis of the current evidence base for dementia training in hospitals and/or for staff working in hospitals is: to describe the current training initiatives (process); to evaluate their implementation (outcomes), and to develop a logic model using the principles of programme theory to identify mechanisms, interactions, facilitators and barriers to dementia-related training in the hospital setting. This presentation discusses the development of a preliminary guiding programme theory for dementia training in hospital settings and the development of a critical interpretive synthesis of current evidence dementia training in hospitals. A three-stage approach developed our guiding programme theory; Stage 1: Preliminary review of the dementia training in hospital settings literature. Stage 2: Discussions with researchers and practitioners involved in dementia and health services research, specifically to identify the mechanisms, facilitators and barriers to dementia training in hospital settings. Stage 3: Construction of guiding questions for the critical interpretive synthesis to further support and enhance the quality of interpretations and critical review of the articles included. Results: There are various barriers to and facilitators of dementia training in hospitals and/or for hospital staff, including both surface and deep-seated factors such as lack of resources, abundance of varying training packages/courses available, and willingness/support to develop and implement training initiatives, existing beliefs and assumptions of trainers and trainees, as well as, previous experiences of trainers and staff with people living with dementia and their carers. Implications: In addition to providing the theoretical framework for our critical interpretive synthesis review, our primary programme theory and logic model for dementia training in hospital settings are also valuable to practitioners, trainers, and those involved in evaluating dementia training initiatives. Investigation of processes involved is key to the development of theory-based, programmatic models for dementia training intervention and policies. Further developments to the programme theory will follow our critical interpretive synthesis of the current evidence on dementia training

The Edinburgh Consensus: preparing for the advent of disease-modifying therapies for Alzheimer’s disease

Context:This commentary discusses the implications of disease-modifying treatments for Alzheimer’s disease which seem likely to appear in the next few years and results from a meeting of British experts in neurodegenerative diseases in Edinburgh. The availability of such treatments would help change public and professional attitudes and accelerate engagement with the prodromal and preclinical populations who might benefit from them. However, this would require an updated understanding of Alzheimer’s disease, namely the important distinction between Alzheimer’s disease and Alzheimer’s dementia.Consensus:Since treatments are likely to be most effective in the early stages, identification of clinically relevant brain changes (for example, amyloid burden using imaging or cerebrospinal fluid biomarkers) will be crucial. While current biomarkers could be useful in identifying eligibility for new therapies, trial data are not available to aid decisions about stopping or continuing treatment in clinical practice. Therefore, effective monitoring of safety and effectiveness when these treatments are introduced into clinical practice will be necessary to inform wide-scale use. Equity of access is key but there is a tension between universal access for everyone with a diagnosis of Alzheimer’s disease and specifying an eligible population most likely to respond. We propose the resources necessary for an optimal care pathway as well as the necessary education and training for primary and secondary care.Conclusion:The majority of current services in the UK and elsewhere would not be able to accommodate the specialist investigations required to select patients and prescribe these therapies. Therefore, a stepped approach would be necessary: from innovating sentinel clinical-academic centres that already have capacity to deliver the necessary phase IV trials, through early adoption in a hub and spoke model, to nationwide adoption for true equity of access. The optimism generated by recent and anticipated developments in the understanding and treatment of Alzheimer’s disease presents a great opportunity to innovate and adapt our services to incorporate the next exciting development in the field of dementia.<br/