ObjectivesDementia progressively affects cognitive functioning, including the ability to communicate. Those who struggle to communicate are often considered unable to relate to other people. Frontline care workers are in a position to connect with residents. However, we know little about their perspectives. The aim of this study was to understand how and when nursing home staff meaningfully engaged with residents with advanced dementia.MethodsSemi-structured interviews, supplemented by informal conversations, were conducted with 21 staff from seven nursing homes. Inductive thematic analysis identified themes in the accounts.ResultsFour themes related to how staff engaged with residents with advanced dementia (initiating meaningful engagement, recognising subtle reactions, practising caring behaviours, patience and perseverance). Two themes related to when meaningful engagement occurred (lacking time to connect, making the most of time during personal care).ConclusionA key barrier to implementing formal interventions to improve care is lack of staff time. Staff overcome this by using personal care time for meaningful engagement with residents. Their approach, developed through experience, is consonant with person-centred dementia care. Building on this, future research should use participatory approaches building on practice wisdom to further develop and evaluate meaningful engagement with residents with advanced dementia.

OBJECTIVES:Meaningful connections promote the quality of life of people living with advanced dementia in nursing homes. However, evidence internationally suggests people living with advanced dementia in nursing homes spend the majority of time alone, with little contact with anyone. Frontline care workers are in powerful positions to meaningfully engage with residents, yet research to date has not focused on their experiences. The aim of this study was to explore the experiences of nursing home staff, specifically, what care workers feel enables them to meaningfully engage with residents living with advanced dementia.METHODS/DESIGN:Semi-structured interviews were conducted with 21 staff from seven nursing homes. Inductive thematic analysis was used.RESULTS:Four themes were important for facilitating care workers to meaningfully engage with residents with advanced dementia: support from managers and nurses, support from experienced care workers, a caring culture and an appropriate physical environment.CONCLUSION:Effective leadership was the key thread that ran throughout. It was evident that meaningfully engaging with residents with advanced dementia was hard, particularly for new or inexperienced care workers. Those with experience (of care work and the residents they cared for), as well as those in formal leadership positions played key roles in facilitating care workers to: perceive it was their role to connect, understand, accept and empathise with residents, understand the importance of getting to know residents' and express their own caring attributes. Future research should focus on empirically testing leadership models that promote meaningful engagement.

Background Homecare workers carry out complex work with people living with dementia, while under-supported, undervalued and undertrained. In this ethnographic study, we explore the skills, training and support needs of homecare workers supporting people living with dementia. Research Design and Methods We conducted 82 interviews with people living with dementia (n = 11), family caregivers (n = 22), homecare staff (n = 30) and health and social care professionals (n = 19) and conducted 100-hours of participant observations with homecare workers (n = 16). We triangulated interview and observational findings and analysed data thematically. Results We developed four themes: 1) 'Navigating the homecare identity and role': describing challenges of moving between different role identities and managing associated expectations, 2) 'Developing and utilising relational and emotional skills': boundaries between caring and getting emotionally involved felt blurred and difficult to manage, 3) 'Managing clients who resist care': homecare workers experienced clients' reactions as challenging and felt "thrown to the wolves" without sufficient training, and 4) 'Drawing on agency and team support': homecare work could be isolating, with no shared workplace, busy schedules and limited opportunity for peer support. Discussion and Implications It is important that training and support for homecare workers addresses the relational, emotional and rights-based aspects of the role. Where a flexible, responsive, person-centred service is required, corresponding training and support is needed, alongside organisational practices, taking account of the broader context of the homecare sector.

BACKGROUND AND OBJECTIVES:We engaged people living with dementia, family carers and health and social care professionals in co-designing two dementia care interventions: for family carers and people living with dementia (New Interventions for Independence in Dementia Study (NIDUS)-family and home-care workers (NIDUS-professional training programme). RESEARCH DESIGN AND METHODS:Over October 2019-March 2020, we invited public and patient (PPI) and professional members of our NIDUS co-design groups to complete the PPI Engagement Evaluation Tool (designed to assess engagement activities), and non-professional PPI members to participate in qualitative telephone interviews. We thematically analysed and integrated mixed-methods findings. RESULTS:Most (15/20; 75%) of the PPI members approached participated. We identified four themes: (1) Creating the right atmosphere: participants found group meetings positive and enabling, though one health professional was unsure how to position themselves within them; (2) Participants influencing the outcome: while most members felt that they had some influence, for one carer consultation seemed too late to influence; (3) Having the right information: several carers wanted greater clarity and more regular updates from researchers; (4) Unique challenges for people living with dementia: memory problems presented challenges in engaging with substantial information, and within a large group. DISCUSSION AND IMPLICATIONS:We reflect on the importance of providing accessible, regular updates, managing power imbalances between co-design group members with lived and professional experiences; and ensuring needs and voices of people living with dementia are prioritised. We encourage future studies to incorporate evaluations of co-design processes into study design.

Abstract Objectives To examine the feasibility and acceptability of NIDUS-Family, a 6–8 session manualised, individually tailored, modular intervention supporting independence at home for people with dementia; and explore participants’ and facilitators’ experiences of the intervention. Method In this single group multi-site feasibility study, trained, supervised non-clinically qualified graduates (facilitators) delivered NIDUS-Family to family carer and people living with dementia dyads. We recruited participants from GP practices and memory services in London and Bradford. We completed quantitative outcomes pre- and post-intervention; and conducted qualitative interviews with participants and facilitators. Our pre-specified main outcomes were proportion of potential participants approached who agreed to participate, intervention adherence and acceptability to family carers, and facilitator fidelity to the manual. Results We recruited 16 dyads (57% of those approached); 12 (75%) completed the intervention. Of 12 participants rating intervention acceptability, 9 (75%) agreed or strongly agreed that it had helped; 2 (18%) neither agreed nor disagreed and 1 (8%) disagreed. Mean facilitator fidelity was high (81.5%). Dyads set on average 3.9 goals; these most commonly related to getting out and about and increasing activity/hobby participation (n = 10); carer wellbeing (n = 6), managing physical complaints (n = 6); meal preparation/cooking (n = 5); and reducing irritability, frustration or aggression (n = 5). Almost all secondary outcomes changed in a direction indicating improvement. In our qualitative analysis we identified three overarching themes; relationships facilitate change, goal-focused versus manualised approach and balancing the needs of carers and people with dementia. Conclusion NIDUS-Family was feasible and acceptable to participants. Following refinements, testing in a pragmatic trial is underway.

BACKGROUND:The COVID-19 pandemic has had a major impact on delivery of social support services. This might be expected to particularly affect older adults and people living with dementia (PLWD), and to reduce their well-being. AIMS:To explore how social support service use by older adults, carers and PLWD, and their mental well-being changed over the first 3 months since the pandemic outbreak. METHODS:Unpaid dementia carers, PLWD and older adults took part in a longitudinal online or telephone survey collected between April and May 2020, and at two subsequent timepoints 6 and 12 weeks after baseline. Participants were asked about their social support service usage in a typical week prior to the pandemic (at baseline), and in the past week at each of the three timepoints. They also completed measures of levels of depression, anxiety and mental well-being. RESULTS:377 participants had complete data at all three timepoints. Social support service usage dropped shortly after lockdown measures were imposed at timepoint 1 (T1), to then increase again by T3. The access to paid care was least affected by COVID-19. Cases of anxiety dropped significantly across the study period, while cases of depression rose. Well-being increased significantly for older adults and PLWD from T1 to T3. CONCLUSIONS:Access to social support services has been significantly affected by the pandemic, which is starting to recover slowly. With mental well-being differently affected across groups, support needs to be put in place to maintain better well-being across those vulnerable groups during the ongoing pandemic.

Background: An unplanned hospital admission of a nursing home resident distresses the person, their family and nursing home staff, and is costly to the NHS. Improving health care in care homes, including early detection of residents’ health changes, may reduce hospital admissions. Previously, we identified four conditions associated with avoidable hospital admissions. We noted promising ‘within-home’ complex interventions including care pathways, knowledge and skills enhancement, and implementation support. Objectives: Develop a complex intervention with implementation support [the Better Health in Residents in Care Homes with Nursing (BHiRCH-NH)] to improve early detection, assessment and treatment for the four conditions. Determine its impact on hospital admissions, test study procedures and acceptability of the intervention and implementation support, and indicate if a definitive trial was warranted. Design: A Carer Reference Panel advised on the intervention, implementation support and study documentation, and engaged in data analysis and interpretation. In workstream 1, we developed a complex intervention to reduce rates of hospitalisation from nursing homes using mixed methods, including a rapid research review, semistructured interviews and consensus workshops. The complex intervention comprised care pathways, approaches to enhance staff knowledge and skills, implementation support and clarity regarding the role of family carers. In workstream 2, we tested the complex intervention and implementation support via two work packages. In work package 1, we conducted a feasibility study of the intervention, implementation support and study procedures in two nursing homes and refined the complex intervention to comprise the Stop and Watch Early Warning Tool (S&W), condition-specific care pathways and a structured framework for nurses to communicate with primary care. The final implementation support included identifying two Practice Development Champions (PDCs) in each intervention home, and supporting them with a training workshop, practice development support group, monthly coaching calls, handbooks and web-based resources. In work package 2, we undertook a cluster randomised controlled trial to pilot test the complex intervention for acceptability and a preliminary estimate of effect. Setting: Fourteen nursing homes allocated to intervention and implementation support (n = 7) or treatment as usual (n = 7). Participants: We recruited sufficient numbers of nursing homes (n = 14), staff (n = 148), family carers (n = 95) and residents (n = 245). Two nursing homes withdrew prior to the intervention starting. Intervention: This ran from February to July 2018. Data sources: Individual-level data on nursing home residents, their family carers and staff; system-level data using nursing home records; and process-level data comprising how the intervention was implemented. Data were collected on recruitment rates, consent and the numbers of family carers who wished to be involved in the residents’ care. Completeness of outcome measures and data collection and the return rate of questionnaires were assessed. Results: The pilot trial showed no effects on hospitalisations or secondary outcomes. No home implemented the intervention tools as expected. Most staff endorsed the importance of early detection, assessment and treatment. Many reported that they ‘were already doing it’, using an early-warning tool; a detailed nursing assessment; or the situation, background, assessment, recommendation communication protocol. Three homes never used the S&W and four never used care pathways. Only 16 S&W forms and eight care pathways were completed. Care records revealed little use of the intervention principles. PDCs from five of six intervention homes attended the training workshop, following which they had variable engagement with implementation support. Progression criteria regarding recruitment and data collection were met: 70% of homes were retained, the proportion of missing data was < 20% and 80% of individual-level data were collected. Necessary rates of data collection, documentation completion and return over the 6-month study period were achieved. However, intervention tools were not fully adopted, suggesting they would not be sustainable outside the trial. Few hospitalisations for the four conditions suggest it an unsuitable primary outcome measure. Key cost components were estimated. Limitations: The study homes may already have had effective approaches to early detection, assessment and treatment for acute health changes; consistent with government policy emphasising the need for enhanced health care in homes. Alternatively, the implementation support may not have been sufficiently potent. Conclusion: A definitive trial is feasible, but the intervention is unlikely to be effective. Participant recruitment, retention, data collection and engagement with family carers can guide subsequent studies, including service evaluation and quality improvement methodologies. Future work: Intervention research should be conducted in homes which need to enhance early detection, assessment and treatment. Interventions to reduce avoidable hospital admissions may be beneficial in residential care homes, as they are not required to employ nurses. Trial registration: Current Controlled Trials ISRCTN74109734 and ISRCTN86811077. Funding: This project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full in Programme Grants for Applied Research; Vol. 9, No. 2. See the NIHR Journals Library website for further project information.

OBJECTIVES:To pilot a complex intervention to support healthcare and improve early detection and treatment for common health conditions experienced by nursing home (NH) residents. DESIGN:Pilot cluster randomised controlled trial. SETTING:14 NHs (7 intervention, 7 control) in London and West Yorkshire. PARTICIPANTS:NH residents, their family carers and staff. INTERVENTION:Complex intervention to support healthcare and improve early detection and treatment of urinary tract and respiratory infections, chronic heart failure and dehydration, comprising: (1) 'Stop and Watch (S&W)' early warning tool for changes in physical health, (2) condition-specific care pathway and (3) Situation, Background, Assessment and Recommendation tool to enhance communication with primary care. Implementation was supported by Practice Development Champions, a Practice Development Support Group and regular telephone coaching with external facilitators. OUTCOME MEASURES:Data on NH (quality ratings, size, ownership), residents, family carers and staff demographics during the month prior to intervention and subsequently, numbers of admissions, accident and emergency visits, and unscheduled general practitioner visits monthly for 6 months during intervention. We collected data on how the intervention was used, healthcare resource use and quality of life data for economic evaluation. We assessed recruitment and retention, and whether a full trial was warranted. RESULTS:We recruited 14 NHs, 148 staff, 95 family carers and 245 residents. We retained the majority of participants recruited (95%). 15% of residents had an unplanned hospital admission for one of the four study conditions. We were able to collect sufficient questionnaire data (all over 96% complete). No NH implemented intervention tools as planned. Only 16 S&W forms and 8 care pathways were completed. There was no evidence of harm. CONCLUSIONS:Recruitment, retention and data collection processes were effective but the intervention not implemented. A full trial is not warranted. TRIAL REGISTRATION NUMBER:ISRCTN74109734 (https://doi.org/10.1186/ISRCTN74109734). ORIGINAL PROTOCOL: BMJ Open. 2019;9(5):e026510. doi:10.1136/bmjopen-2018-026510.

Abstract Objectives Agitation is common and problematic in care home residents with dementia. This study investigated the (cost)effectiveness of Dementia Care Mapping™ (DCM) for reducing agitation in this population. Method Pragmatic, cluster randomised controlled trial with cost-effectiveness analysis in 50 care homes, follow-up at 6 and 16 months and stratified randomisation to intervention (n = 31) and control (n = 19). Residents with dementia were recruited at baseline (n = 726) and 16 months (n = 261). Clusters were not blinded to allocation. Three DCM cycles were scheduled, delivered by two trained staff per home. Cycle one was supported by an external DCM expert. Agitation (Cohen-Mansfield Agitation Inventory (CMAI)) at 16 months was the primary outcome. Results DCM was not superior to control on any outcomes (cross-sectional sample n = 675: 287 control, 388 intervention). The adjusted mean CMAI score difference was –2.11 points (95% CI –4.66 to 0.44, p = 0.104, adjusted ICC control = 0, intervention 0.001). Sensitivity analyses supported the primary analysis. Incremental cost per unit improvement in CMAI and QALYs (intervention vs control) on closed-cohort baseline recruited sample (n = 726, 418 intervention, 308 control) was £289 and £60,627 respectively. Loss to follow-up at 16 months in the original cohort was 312/726 (43·0%) mainly (87·2%) due to deaths. Intervention dose was low with only a quarter of homes completing more than one DCM cycle. Conclusion No benefits of DCM were evidenced. Low intervention dose indicates standard care homes may be insufficiently resourced to implement DCM. Alternative models of implementation, or other approaches to reducing agitation should be considered.

BACKGROUND:Most people living with dementia want to remain in their own homes, supported by family and paid carers. Care at home often breaks down, necessitating transition to a care home and existing interventions are limited. To inform the development of psychosocial interventions to enable people with dementia to live well for longer at home, we qualitatively explored the views of people living with dementia, family carers and health and social care professionals, on how to achieve and maintain independence at home and what impedes this.METHODS:We conducted an inductive thematic analysis of qualitative interviews with 11 people living with dementia, 19 professionals and 22 family carers in England.RESULTS:We identified four overarching themes: being in a safe and familiar environment, enabling not disabling care, maintaining relationships and community connectedness, and getting the right support. For people living with dementia, the realities of staying active were complex: there was a tension between accepting support that enabled independence and a feeling that in doing so they were accepting dependency. Their and professionals' accounts prioritised autonomy and 'living well with dementia', while family carers prioritised avoiding harm. Professionals promoted positive risk-taking and facilitating independence, whereas family carers often felt they were left holding this risk.DISCUSSION:Psychosocial interventions must accommodate tensions between positive risk-taking and avoiding harm, facilitating autonomy and providing support. They should be adaptive and collaborative, combining self-management with flexible support. Compassionate implementation of rights-based dementia care must consider the emotional burden for family carers of supporting someone to live positively with risk.

•This study investigates the impact of training to reduce to reduce burnout in nursing home nurses.•The interviews were used to gain insights into the impact of the intervention.•Working long hours, feeling overloaded, unsupported, isolated, and not feeling valued all led to nurses' burnout.•The training appeared to reverse or break through some of the conditions that led to burnout.•Findings demonstrate that training can support nurses working in nursing homes.

Objectives The aim of this national survey was to explore the impact of COVID-19 public health measures on access to social support services and the effects of closures of services on the mental well-being of older people and those affected by dementia. Methods A UK-wide online and telephone survey was conducted with older adults, people with dementia, and carers between April and May 2020. The survey captured demographic and postcode data, social support service usage before and after COVID-19 public health measures, current quality of life, depression, and anxiety. Multiple linear regression analysis was used to explore the relationship between social support service variations and anxiety and well-being. Results Five hundred and sixty-nine participants completed the survey (61 people with dementia, 285 unpaid carers, and 223 older adults). Paired samplest-tests andX(2)-tests showed that the mean hour of weekly social support service usage and the number of people having accessed various services was significantly reduced post COVID-19. Multiple regression analyses showed that higher variations in social support service hours significantly predicted increased levels of anxiety in people with dementia and older adults, and lower levels of mental well-being in unpaid carers and older adults. Conclusions Being unable to access social support services due to COVID contributed to worse quality of life and anxiety in those affected by dementia and older adults across the UK. Social support services need to be enabled to continue providing support in adapted formats, especially in light of continued public health restrictions for the foreseeable future.

Purpose To build an evidence-informed theoretical model describing how to support people with dementia to live well or for longer at home. Methods We searched electronic databases to August 2018 for papers meeting predetermined inclusion criteria in two reviews that informed our model. We scoped literature for theoretical models of how to enable people with dementia to live at home independently, with good life quality or for longer. We systematically reviewed Randomised Controlled Trials (RCTs) reporting psychosocial intervention effects on time lived with dementia at home. Two researchers independently rated risk of bias. We developed our theoretical model through discussions with experts by personal, clinical and academic experiences, informed by this evidence base. Results Our scoping review included 52 studies. We divided models identified into: values and approaches (relational and recovery models; optimising environment and activities; family carer skills and support); care strategies (family carer-focused; needs and goal-based; self-management); and service models (case management; integrated; consumer-directed). The 11 RCTs included in our systematic review, all judged at low risk of bias, described only two interventions that increased time people with dementia lived in their own homes. These collectively encompassed all these components except for consumer-directed and integrated care. We developed and revised our model, using review evidence and expert consultation to define the final model. Conclusions Our theoretical model describes values, care strategies and service models that can be used in the design of interventions to enable people with dementia to live well and for longer at home. Trial registration PROSPERO 2018 registration number: CRD42018099693 (scoping review). PROSPERO 2018 registration number: CRD42018099200 (RCT systematic review).

BACKGROUND:The quality of care for people with dementia in care homes is of concern. Interventions that can improve care outcomes are required. OBJECTIVE:To investigate the clinical effectiveness and cost-effectiveness of Dementia Care Mapping™ (DCM) for reducing agitation and improving care outcomes for people living with dementia in care homes, versus usual care. DESIGN:A pragmatic, cluster randomised controlled trial with an open-cohort design, follow-up at 6 and 16 months, integrated cost-effectiveness analysis and process evaluation. Clusters were not blinded to allocation. The primary end point was completed by staff proxy and independent assessors. SETTING:Stratified randomisation of 50 care homes to the intervention and control groups on a 3 : 2 ratio by type, size, staff exposure to dementia training and recruiting hub. PARTICIPANTS:Fifty care homes were randomised (intervention, n = 31; control, n = 19), with 726 residents recruited at baseline and a further 261 recruited after 16 months. Care homes were eligible if they recruited a minimum of 10 residents, were not subject to improvement notices, had not used DCM in the previous 18 months and were not participating in conflicting research. Residents were eligible if they lived there permanently, had a formal diagnosis of dementia or a score of 4+ on the Functional Assessment Staging Test of Alzheimer's Disease, were proficient in English and were not terminally ill or permanently cared for in bed. All homes were audited on the delivery of dementia and person-centred care awareness training. Those not reaching a minimum standard were provided training ahead of randomisation. Eighteen homes took part in the process evaluation. INTERVENTION:Two staff members from each intervention home were trained to use DCM and were asked to carry out three DCM cycles; the first was supported by an external expert. MAIN OUTCOME MEASURES:The primary outcome was agitation (Cohen-Mansfield Agitation Inventory), measured at 16 months. Secondary outcomes included resident behaviours and quality of life. RESULTS:There were 675 residents in the final analysis (intervention, n = 388; control, n = 287). There was no evidence of a difference in agitation levels between the treatment arms. The adjusted mean difference in Cohen-Mansfield Agitation Inventory score was -2.11 points, being lower in the intervention group than in the control (95% confidence interval -4.66 to 0.44; p = 0.104; adjusted intracluster correlation coefficient: control = 0, intervention = 0.001). The sensitivity analyses results supported the primary analysis. No differences were detected in any of the secondary outcomes. The health economic analyses indicated that DCM was not cost-effective. Intervention adherence was problematic; only 26% of homes completed more than their first DCM cycle. Impacts, barriers to and facilitators of DCM implementation were identified. LIMITATIONS:The primary completion of resident outcomes was by staff proxy, owing to self-report difficulties for residents with advanced dementia. Clusters were not blinded to allocation, although supportive analyses suggested that any reporting bias was not clinically important. CONCLUSIONS:There was no benefit of DCM over control for any outcomes. The implementation of DCM by care home staff was suboptimal compared with the protocol in the majority of homes. FUTURE WORK:Alternative models of DCM implementation should be considered that do not rely solely on leadership by care home staff. TRIAL REGISTRATION:Current Controlled Trials ISRCTN82288852. FUNDING:This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 24, No. 16. See the NIHR Journals Library website for further project information.

Introduction Acute hospital admission is distressing for care home residents. Ambulatory care sensitive conditions, such as respiratory and urinary tract infections, are conditions that can cause unplanned hospital admission but may have been avoidable with timely detection and intervention in the community. The Better Health in Residents in Care Homes (BHiRCH) programme has feasibility tested and will pilot a multicomponent intervention to reduce these avoidable hospital admissions. The BHiRCH intervention comprises an early warning tool for noting changes in resident health, a care pathway (clinical guidance and decision support system) and a structured method for communicating with primary care, adapted for use in the care home. We use practice development champions to support implementation and embed changes in care. Methods and analysis Cluster randomised pilot trial to test study procedures and indicate whether a further definitive trial is warranted. Fourteen care homes with nursing (nursing homes) will be randomly allocated to intervention (delivered at nursing home level) or control groups. Two nurses from each home become Practice Development Champions trained to implement the intervention, supported by a practice development support group. Data will be collected for 3 months preintervention, monthly during the 12-month intervention and 1 month after. Individual-level data includes resident, care partner and staff demographics, resident functional status, service use and quality of life (for health economic analysis) and the extent to which staff perceive the organisation supports person centred care. System-level data includes primary and secondary health services contacts (ie, general practitioner and hospital admissions). Process evaluation assesses intervention acceptability, feasibility, fidelity, ease of implementation in practice and study procedures (ie, consent and recruitment rates). Ethics and dissemination Approved by Research Ethics Committee and the UK Health Research Authority. Findings will be disseminated via academic and policy conferences, peer-reviewed publications and social media (eg, Twitter). Trial registration number ISRCTN74109734; Pre-results.

The home-care workforce is in high demand globally. Home-care workers provide care for people at home, including practical and personal care, as well as other tasks such as medication management. We conducted a systematic review with the aims of understanding methods of observation that have been employed to study home care and to explore how these methods have enabled researchers to understand the quality of home care. We searched the literature using PubMed and CINAHL databases in May 2018, with no limits applied to date of publication. We searched for MeSH terms of 'Home Care Services', 'Home Health Care', 'Home Nursing' and 'Observation*'. Across 15 eligible studies, the types of observation methods employed were categorised as structured, guided and unstructured. The characteristics of these methods, such as the level of participation adopted by the observer, varied across the studies. Three themes were developed through a narrative synthesis of the included studies' findings: 'The impact of care delivery and organisational factors', 'Observing relationships and communications', and 'People and places behind closed doors'. We conclude that methods of observation are a fairly novel, yet rich and meaningful way of exploring home-care practice. Researchers undertaking observations should consider elements such as the number of researchers observing and the potential for variations, how and when to record the observations, possible triangulation of data, the researcher's reflective stance as an observer, as well as ethical considerations.

BACKGROUND:People living with dementia in care homes are regularly admitted to hospital. The transition between hospitals and care homes is an area of documented poor care leading to adverse outcomes including costly re-hospitalisation. This review aims to understand the experiences and outcomes of care for people living with dementia who undergo this transition from the perspectives of key stakeholders; people living with dementia, their families and health care professionals.METHODS:A systematic search was conducted on the CINAHL, ASSIA, EMBASE, MEDLINE, PsychINFO, and Scopus databases without any date restrictions. We hand searched reference lists of included papers. Papers were included if they focused on people living with dementia moving from hospital to a short or long term care setting in the community including sub-acute, rehabilitation, skilled nursing facilities or care homes. Titles, abstracts and full texts were screened. Two authors independently evaluated study quality using a checklist. Themes were identified and discussed to reach consensus.RESULTS:In total, nine papers reporting eight studies met the inclusion criteria for the systematic review. A total of 257 stakeholders participated; 37 people living with dementia, 95 family members, and 125 health and social care professionals. Studies took place in Australia, Canada, United Kingdom (UK), and the United States of America (US). Four themes were identified as factors influencing the experience and outcomes of the transition from the perspectives of stakeholders; preparing for transition; quality of communication; the quality of care; family engagement and roles.CONCLUSION:This systematic review presents a compelling case for the need for robust evidence to guide best practice in this important area of multi-disciplinary clinical practice. The evidence suggests this transition is challenging for all stakeholders and that people with dementia have specific needs which need attention during this period.TRIAL REGISTRATION:PROSPERO Registration Number: CRD42017082041 .

Most people living with dementia want to continue living in their own homes for as long as possible. Risks of care at home breaking down are high, necessitating a transition to a care home. No interventions in the UK have consistently shown improvements to people with dementia's life quality, functioning, or time living at home. We aimed to understand barriers and facilitators for achieving independence from the family carer, person with dementia and health professional perspective to inform the development of a psychological intervention to enable people with dementia to live well at home for longer. Semi-structured qualitative interviews with 52 participants; 11 people with dementia, 19 health professionals and 22 family carers, and a systematic review of theoretical models to support people with dementia to live well at home for longer. Facilitators for independence included an enabling not disabling approach to care, availability of support from professionals and informal networks, services and families working together and adapting the environment through aids and technology. Barriers to independence were a lack of support from services, reluctance to accept support, and wider societal issues such as stigma and the cost of care. We identified values, care strategies and service models as key components of a theoretical model for supporting independence at home. We have developed a theory-based model and identified barriers and facilitators for achieving independence at home from multi-stakeholder perspectives. We have used this evidence to coproduce an intervention to enable people with dementia to live well for longer at home.

The definition of health should include a more dynamic focus on the ability of individuals to adapt and self-manage physical, mental and social well-being despite the presence of chronic conditions. In 2016 the European InterDem’s Social Health Taskforce operationalized three dimensions of Social Health for dementia: (1) having the capacity to fulfil one’s potential and obligations; (2) the ability to manage life with some degree of independence; and (3) participation in social activities. In this symposium we bring together presenters, both scientists and people living with dementia, who will share their personal experiences and data on the concept of Social Health in dementia. We begin with a brief overview of the concept from the European perspective. The first presentation is given by members of a stakeholder group of persons living with dementia who informed the U.S. 2017 National Research Summit on Dementia Care; they will expand on the moral imperative of facilitating the capacity to fulfil one’s potential. The second presenter will report on findings from the NIA-funded COPE project that teaches family caregivers how to help their relatives with dementia manage life with greater independence by adapting the home environment to facilitate maximum function and safety. The final presenter will share data on the transferability and effectiveness of the Meeting Centres Support Programme, an intervention that promotes the social activity of persons with dementia and their families across Europe. The discussant will bring together these diverse individual, interdisciplinary and international perspectives on Social Health.