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Carers of people with dementia can experience reduced health and wellbeing, but little is known about how best to support them. There is some evidence to suggest that case management may improve outcomes for carers but less evidence about the features of case management services that can effectively support carers of people with dementia. Admiral Nursing operates a case management approach staffed by specialist nurses and is the only service of its kind in the UK dedicated to helping people with dementia and their carers. This paper reports qualitative findings from a mixed methods study of Admiral Nursing. For the qualitative strand of the project, data were collected in focus groups and in-depth interviews with carers of people with dementia (n= 35) and analysed thematically using the Framework approach. The aim of this analysis was to understand differences between the experiences of the carers in our sample with and without Admiral Nursing, applying Freeman’s model of continuity of care (Freeman et al., 2000). Participants who had received Admiral Nursing were recruited from two geographical locations and carers without experience of this service were recruited from two different areas. We found that carers in our sample felt ‘supported’ in circumstances where they received an ongoing service from an Admiral Nurse or other professional with expertise in dementia who was able to develop a meaningful relationship with them over time. We conclude that ongoing support, expertise in dementia and a meaningful relationship are key features of relationship continuity common in carers’ reports of feeling supported. Specialist nurses are well placed to provide this continuity.

Additional file 1. SRQR Checklist.

Additional file 2. Interview Guide.

BackgroundDecision impact studies have become increasingly prevalent in oncology in recent years, particularly in breast cancer prognostic research. Such studies, which aim to evaluate the impact of a test on clinical decision-making, appear to be a new form of knowledge with the potential to impact clinical practice and regulatory decision-making in genomic medicine. Yet their origins, intended purpose and usage have not yet been explored. The objectives of this review are to identify and characterize decision impact studies in genomic medicine in cancer care. This review is comprised of two parts. First, we will conduct a scoping review to catalogue the characteristics of decision impact studies. The scoping review will be followed by a bibliometric analysis to understand the role of actors and institutions in the production and dissemination of this new knowledge, by identifying influential articles, authors, global research trends and collaboration networks. MethodsWe will conduct a scoping review and a bibliometric analysis of the scoping review results. The search will include four databases, Medline, Embase, Scopus and Web of Science, using a comprehensive search strategy developed through a preliminary review of the literature. Arksey & O’Malley’s scoping review methodology, with updates by Levac et al. will be used, and the review will be reported following the PRISMA-ScR checklist. The FT Model will be used to collect and analyze data on clinical utility of decision impact studies. Our bibliometric analysis, using Bibliometrix software, will elucidate the evolution of these studies and provide data on the trends, influences and networks emerging in the field.DiscussionThis review will be a first step in understanding the evolution and uses of these studies and their potential influence on the integration of emerging genomic technologies into clinical practice. By exploring their origin and evolution across space and time, this study will equip future research to investigate the role of these studies in decision-making for regulatory processes, including market access and public and private coverage decision-making. Systematic review registration: Open Science Framework osf.io/hm3jr

Introduction: Despite growing international interest in life story work as a tool for person-centred dementia care, there is little agreement on what constitutes good practice and little evidence from the perspectives of people with dementia or their family carers. Design and methods: This paper reports the findings from the qualitative element of a larger study looking at the feasibility of evaluating life story work. Ten focus groups were held with 73 participants: four groups of people with dementia (25 participants), three with family carers (21 participants), and three with staff, professionals and volunteers with experience of life story work (27 participants). Findings: It became apparent through our focus groups that, when people talk about ‘life story work’, different people mean different things. This related to both process and outcomes. In particular, a person with dementia may have very different views from others about what life story work is for and how their life story products should be used. There was general agreement that a good practice approach would be tailored to the individual needs and preferences of the person with dementia. However, in practice many settings used templates and the process was led by staff or completed by family carers. Conclusion: We produced nine key features of good practice which could be used to guide the life story work process. Key elements include: the recognition that not everyone will want to take part in life story work and that some people may even find it distressing; the importance of being led by the person with dementia themselves; the need for training and support for staff, carers and volunteers; and the potential for life story work to celebrate the person’s life today and look to the future.

Supplemental material, HSR897091 Supplemental Material for Using a systematic review to uncover theory and outcomes for a complex intervention in health and social care: a worked example using life story work for people with dementia by Gillian Parker, Kate Gridley, Yvonne Birks and Julie Glanville in Journal of Health Services Research & Policy

Reablement – or restorative care – is a central feature of many western governments’ approaches to supporting and enabling older people to stay in their own homes and minimise demand for social care. Existing evidence supports this approach although further research is required to strengthen the certainty of conclusions being drawn. In countries where reablement has been rolled out nationally, an additional research priority – to develop an evidence base on models of delivery – is emerging. This paper reports a prospective cohort study of individuals referred to three English social care reablement services, each representing a different model of service delivery. Outcomes included healthcare- and social care–related quality of life, functioning, mental health and resource use (service costs, informal carer time, out-of-pocket costs). In contrast with the majority of other studies, self-report measures were the predominant source of outcomes and resource use data. Furthermore, no previous evaluation has used a global measure of mental health. Outcomes data were collected on entry to the service, discharge and 6 months post discharge. A number of challenges were encountered during the study and insufficient individuals were recruited in two research sites to allow a comparison of service models. Findings from descriptive analyses of outcomes align with previous studies and positive changes were observed across all outcome domains. Improvements observed at discharge were, for most, retained at 6 months follow-up. Patterns of change in functional ability point to the importance of assessing functioning in terms of basic and extended activities of daily living. Findings from the economic evaluation highlight the importance of collecting data on informal carer time and also demonstrate the viability of collecting resource use data direct from service users. The study demonstrates challenges, and value, of including self-report outcome and resource use measures in evaluations of reablement.

The UK Prime Minister's Challenge on Dementia 2020 includes a target for more research to be conducted in care homes, yet research in care homes can be complex, as they are both homes and workplaces.\ud We reflect on our experiences as researchers on a mixed methods study in six care homes over a year. We include the experiences of care home residents, their family and friends, and members of staff.\ud Care home staff turnover was high, funding was constrained and priorities often differed from those of the researchers. Negotiating ongoing access and data collection was therefore challenging at times. Most residents did not mind taking part, but those who preferred not to felt able to decline. Private space was limited. \ud Research in care homes needs to be adequately planned and resourced, including funding for staff time, if staff, residents and visitors are to participate in a meaningful way.

Carers contribute essential support to enable people with dementia to continue living within the community. Admiral Nurses provide specialist dementia support for carers of people with dementia, including offering expert emotional support and guidance, and work to join up different parts of the health and social care system to address needs in a co-ordinated way. The cost-effectiveness of this service is not clear. We undertook a feasibility study to explore related outcomes and costs for these carers. A cross-sectional, clustered survey was undertaken in England in 2017, in areas with and without Admiral Nursing. The survey questionnaire included questions on the characteristics of the carers and the person with dementia, outcomes (care-related quality of life, self-efficacy and subjective wellbeing), use of health and social care services, out-of-pocket costs and time spent on informal care. We used different econometric techniques to compare the outcomes and the costs of the carers with and without Admiral Nursing services: linear regression, propensity score matching and instrumental variables analysis. These techniques allowed us to control for differences in observed and unobserved characteristics between the two groups of carers which determined outcomes and costs. We concluded that Admiral Nursing services might have a positive effect on carers’ care-related quality of life, self-efficacy and subjective wellbeing. Further, we found little difference in costs between carers using Admiral Nursing and those using usual care, or in the costs of the people with dementia they care for. Our findings provided an initial indication as to whether AN services could be good value for money. The key limitation of the study was the difficulty in controlling for unobserved characteristics because of the cross-sectional nature of our observational data. To diminish this limitation, our survey could be used in future studies following carers with and without Admiral Nursing services over time.

Background\ud Reablement is an intensive, time-limited intervention for people at risk of needing social care or increased intensity of care. Differing from homecare, it seeks to restore functioning and self-care skills. In England, it as a core element of intermediate care. The existing evidence base is limited.\ud Aims\ud Describe reablement services in England and develop a service model typology;\ud Conduct a mixed method comparative evaluation of service models investigating outcomes, factors impacting outcomes, costs and cost-effectiveness, and user and practitioner experiences;\ud Investigate specialist reablement services/practices for people with dementia.\ud Methods\ud Work package 1 (WP1), taking place in 2015, surveyed reablement services in England. Data were collected on organisational characteristics, service delivery and practice, and service costs and caseload.\ud Work package 2 (WP2) was an observational study of three reablement services, each representing a different service model. Data collected included: health- (EQ-5D-5L) and social care-related (ASCOT SCT-4) quality of life, practitioner (Barthel Index) and self-reported (NEADL scale) functioning, individual and service characteristics, and resource use. It was collected on entry into reablement (n=186), at discharge (n=128) and, for those reaching the timepoint within the study timeline, six months post-discharge (n=64). Interviews with staff and service users explored experiences of delivering or receiving reablement and its perceived impacts.\ud Work package 3 (WP3) interviewed staff in eight reablement services to investigate experiences of reabling people with dementia.\ud Results\ud 201 services, located in 139 Local Authorities took part in the survey. Services varied in their organisational base, relationship with other intermediate care services, use of out-sourced providers, skill mix, and scope of reablement input. These characteristics influenced aspects of service delivery and practice. Average cost per case was £1,728.\ud Lower than expected sample sizes meant a comparison of service models in WP2 was not possible. Findings are preliminary. At T1, significant improvements in mean score on outcome measures except self-reported functioning were observed. Further improvements were observed at T2, but only significant for self-reported functioning. There was some evidence that individual (e.g. engagement, mental health) and service (e.g. service structure) characteristics were associated with T1 outcomes and resource use. Staff views on factors affecting outcomes typically aligned with, or offered possible explanations for, these associations. However, it was not possible to establish the significance of these findings in terms of practice or commissioning decisions. Service users expressed satisfaction with reablement and identified two core impacts: regained independence and, during reablement, companionship. Staff participating in WP3 believed people with dementia can benefit from reablement, but objectives may differ and expectations for regained independence inappropriate. Furthermore, practice (e.g. duration of home visits) should be adjusted and staff adequately trained.\ud Conclusions\ud The study contributes to our understanding of reablement, and what impacts on outcomes and costs. Staff believe reablement can be appropriate for people with dementia. Findings will be of interest to commissioners and service managers. Future research should further investigate factors impacting on outcomes, and reabling people with dementia.

Background Unpaid carers are the mainstay of support for people with dementia. Admiral Nursing (AN) is the only specialist nursing service that specifically focuses on supporting such carers, but evidence of its effectiveness, costs and relationships with other health and social care services is limited. This project aimed to address this gap and explore the feasibility of a full-scale formal evaluation. Objectives To explore the relationships between characteristics of carers and people with dementia, service type and input and outcomes; to develop and test data collection methods for subsequent economic evaluation; to explore the effect of AN on outcomes and costs, compared with usual care; to explore the perceived system-wide impact of specialist support for carers of people with dementia, compared with usual care; and to implement new data collection methods in AN, which could also be used by other services, to facilitate evaluation. Design A mixed-methods study, using secondary analysis of an administrative data set, and primary (cross-sectional) quantitative and qualitative data collection. Setting Qualitative research with carers in four areas of England; a survey of carers in 32 local authority areas (16 with and 16 without AN); and qualitative interviews with professionals in four areas. Participants Thirty-five carers of people with dementia and 20 professionals were interviewed qualitatively; 346 carers completed in-scope questionnaires (46% through AN services and 54% from matched non-AN areas). Interventions Specialist nursing support for carers of people with dementia (with AN as an exemplar) compared with usual care. Main outcome measures The Adult Social Care Outcomes Toolkit for Carers; the EuroQol-5 Dimensions, five-level version; and the Caregiver Self-Efficacy for Managing Dementia Scale. Data sources Dementia UK’s AN administrative data set. Results Admiral Nurses are successfully targeting the most complex cases. They work predominantly with older carers who have the main responsibility for the person with dementia, who are heavily involved in caring activity and who may be at risk. Three outcome areas that are important to carers of people with dementia and are potentially affected by receiving support are (1) carer self-efficacy, (2) carer quality of life (3) and carer mental and physical health. The carers in the survey receiving support from AN were older, were more heavily involved in caring and had poorer outcomes than carers not in receipt of such support. When these differences were controlled for, carers supported by AN had better outcomes, although the differences did not reach statistical significance. Health and social care costs were similar in both groups. The perceived system-wide impact of services, such as AN, is not well understood by professional stakeholders. Limitations Challenges were experienced in identifying similar carers in areas with or without an AN service and in the cross-sectional nature of the work. Conclusions Specialist nursing support to carers of people with dementia may enable them to continue providing care to the end or very close to the end of the dementia journey. The outcomes for such carers may be no different from, or even slightly better than, those of similar carers without this support, although the costs to health and social care services are the same in each case. Future work Future research could investigate the impact of specialist support for carers on admission to long-term care. There is also a need for more work to encourage routine use of the selected outcome measures in dementia service delivery. Funding The National Institute for Health Research Health Services and Delivery Research programme.

Supplemental material, HEJ-19-0242_Supplementary_file-1 for Environmental competencies for healthcare educators and trainees: A scoping review by Gillian Parker, Whitney Berta, Christine Shea and Fiona Miller in Health Education Journal

EBV is a virus associated with human cancers and is well known for its ability to transform B lymphocytes into continuously proliferating lymphoblastoid cell lines. EBNA3C is considered an oncoprotein and has been shown to be essential for B cell transformation by EBV. EBNA3C is well characterized as a viral transcription factor, but very little is known about its mechanisms of action. In the present study, we demonstrate that removal of the activating histone mark H3K4me3 and deposition of the repressive mark H3K27me3 by EBNA3C on COBLL1 are achieved by at least two distinct mechanisms. Furthermore, we discovered that EBNA3C interacts with the lysine demethylase KDM2B and that this interaction is important for its transcriptional repressive function. The findings in this study provide new insights into the mechanism used by the oncoprotein EBNA3C to repress cellular target genes., Epstein-Barr virus nuclear antigen 3C (EBNA3C) is a well-defined repressor of host gene expression in B cells transformed by Epstein-Barr virus (EBV) that cooperates with various cellular factors. It is established that EBNA3C interacts with the cellular factor RBPJ (RBP-Jκ or CBF1) through two distinct motifs: the TFGC motif, also called the homology domain (HD) motif, and the VWTP motif. In this study, we investigated the role of each motif in EBNA3C transcriptional repression activity by using two novel recombinant viruses with single RBPJ interaction motifs mutated (EBNA3C HDmut and EBNA3C W227S). Infection of primary B cells with either of these recombinant EBVs led to the successful establishment of lymphoblastoid cell lines (LCLs). Gene expression analysis showed that full repression of EBNA3C target genes is not achieved by EBNA3C HDmut compared to that with EBNA3C W227S or the EBNA3C wild type (WT). Focusing on the well-characterized EBNA3C-repressed genes COBLL1, ADAM28, and ADAMDEC1, we investigated the mechanism of EBNA3C-mediated transcriptional repression. Chromatin immunoprecipitation (ChIP) analysis indicated that EBNA3C HDmut is still able to recruit Polycomb proteins BMI1 and SUZ12 to COBLL1 as efficiently as EBNA3C WT does, leading to the full deposition of the repressive histone mark H3K27me3. However, we found that the activation-associated chromatin mark H3K4me3 is highly enriched at EBNA3C target genes in LCLs expressing EBNA3C HDmut. We show here that EBNA3C interacts with the histone lysine demethylase KDM2B and that this interaction is important for H3K4me3 removal and for the EBNA3C-mediated repression of COBLL1 and the ADAM28-ADAMDEC1 locus. IMPORTANCE EBV is a virus associated with human cancers and is well known for its ability to transform B lymphocytes into continuously proliferating lymphoblastoid cell lines. EBNA3C is considered an oncoprotein and has been shown to be essential for B cell transformation by EBV. EBNA3C is well characterized as a viral transcription factor, but very little is known about its mechanisms of action. In the present study, we demonstrate that removal of the activating histone mark H3K4me3 and deposition of the repressive mark H3K27me3 by EBNA3C on COBLL1 are achieved by at least two distinct mechanisms. Furthermore, we discovered that EBNA3C interacts with the lysine demethylase KDM2B and that this interaction is important for its transcriptional repressive function. The findings in this study provide new insights into the mechanism used by the oncoprotein EBNA3C to repress cellular target genes.

Background Policy and research interest in carers continues to grow. A previous meta-review, published in 2010, by Parker et al. (Parker G, Arksey H, Harden M. Meta-review of International Evidence on Interventions to Support Carers. York: Social Policy Research Unit, University of York; 2010) found little compelling evidence of effectiveness about specific interventions and costs. Objective To update what is known about effective interventions to support carers of ill, disabled or older adults. Design Rapid meta-review. Setting Any relevant to the UK health and social care system. Participants Carers (who provide support on an unpaid basis) of adults who are ill, disabled or older. Interventions Any intervention primarily aimed at carers. Main outcome measures Any direct outcome for carers. Data sources Database searches (including Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects, MEDLINE, Applied Social Sciences Index and Abstracts and Social Care Online) for systematic reviews published from January 2009 to 2016. Review methods We used EndNote X7.4 (Thomson Reuters, CA, USA) to screen titles and abstracts. Final decisions on the inclusion of papers were made by two reviewers independently, using a Microsoft Excel® 2013 spreadsheet (Microsoft Corporation, Redmond, WA, USA). We carried out a narrative synthesis structured by patient condition and by seven outcomes of interest. We assessed the quality of the included systematic reviews using established criteria. We invited a user group of carers to give their views on the overall findings of our review. Results Sixty-one systematic reviews were included (27 of high quality, 25 of medium quality and nine of low quality). Patterns in the literature were similar to those in earlier work. The quality of reviews had improved, but primary studies remained limited in quality and quantity. Of the high-quality reviews, 14 focused on carers of people with dementia, four focused on carers of those with cancer, four focused on carers of people with stroke, three focused on carers of those at the end of life with various conditions and two focused on carers of people with mental health problems. Multicomponent interventions featured prominently, emphasising psychosocial or psychoeducational content, education and training. Multiple outcomes were explored, primarily in mental health, burden and stress, and well-being or quality of life. Negative effects following respite care were unsupported by our user group. As with earlier work, we found little evidence on intervention cost-effectiveness. No differences in review topics were found across high-, medium- and low-quality reviews. Limitations The nature of meta-reviews precludes definitive conclusions about intervention effectiveness, for whom and why. Many of the included reviews were small in size and authors generally relied on small numbers of studies to underpin their conclusions. The meta-review was restricted to English-language publications. Short timescales prevented any investigation of the overlap of primary studies, and growth in the evidence base since the original meta-review meant that post-protocol decisions were necessary. Conclusions There is no ‘one size fits all’ intervention to support carers. Potential exists for effective support in specific groups of carers. This includes shared learning, cognitive reframing, meditation and computer-delivered psychosocial support for carers of people with dementia, and psychosocial interventions, art therapy and counselling for carers of people with cancer. Counselling may also help carers of people with stroke. The effectiveness of respite care remains a paradox, given the apparent conflict between the empirical evidence and the views of carers. Future work More good-quality, theory-based, primary research is warranted. Evidence is needed on the differential impact of interventions for various types of carers (including young carers and carers from minority groups), and on the effectiveness of constituent parts in multicomponent programmes. Further research triangulating qualitative and quantitative evidence on respite care is urgently required. The overlap of primary studies was not formally investigated in our review, and this warrants future evaluation. Study registration This study is registered as PROSPERO CRD42016033367. Funding The National Institute for Health Research Health Services and Delivery Research programme.

Unpaid carers are the mainstay of the UK care system for people with dementia. Yet caring can have an impact on the well-being and health of the carer. Admiral Nursing is the only specialist nursing service in the UK that specifically focuses on supporting carers of people with dementia, but evidence of its effectiveness, costs, and relationships to other services is limited. This project aimed to address this gap and explore the feasibility of full-scale formal evaluation.