Chatting: Family Carers' Perspectives on Receiving Support from Dementia Crisis Teams.

Family caregivers are vital to enabling people with dementia to live longer in their own homes. For these caregivers, chatting with clinicians-being listened to empathetically and receiving reassurance-can be seen as not incidental but important to supporting them. This paper considers and identifies the significance of this relational work for family carers by re-examining data originally collected to document caregivers' perspectives on quality in crisis response teams. This reveals that chatting, for family caregivers, comprises three related features: (i) that family caregivers by responding to a person's changing and sometimes challenging needs and behaviors inhabit a precarious equilibrium; (ii) that caregivers greatly appreciate 'chatting' with visiting clinicians; and (iii) that while caregivers appreciate these chats, they can be highly critical of the institutionalized character of a crisis response team's involvement with them.

Evaluating an interactive tool that reasons about quality of life to support life planning by older people.

Objectives: In response to the lack of digital support for older people to plan their lives for quality of life, research was undertaken to co-design and then evaluate a new digital tool that combined interactive guidance for life planning with a computerised model of quality of life. Method: First, a workshop-based process for co-designing the SCAMPI tool with older people is reported. A first version of this tool was then evaluated over eight consecutive weeks by nine older people living in their own homes. Four of these people were living with Parkinson's disease, one with early-stage dementia, and four without any diagnosed chronic condition. Regular semi-structured interviews were undertaken with each individual older person and, where wanted, their life partner. A more in-depth exit interview was conducted at the end of the period of tool use. Themes arising from analyses of content from these interviews were combined with first-hand data collected from the tool's use to develop a description of how each older person used the tool over the 8 weeks. Results: The findings provided the first evidence that the co-designed tool, and in particular the computerised model, could offer some value to older people. Although some struggled to use the tool as it was designed, which led to limited uptake of the tool's suggestions, the older people reported factoring these suggestions into their longer-term planning, as health and/or circumstances might change. Conclusions: The article contributes to the evolving discussion about how to deploy such digital technologies to support quality of life more effectively.

A process evaluation of the NIDUS-Professional dementia training intervention for UK homecare workers.

INTRODUCTION: This process evaluation was conducted in parallel to the randomised controlled feasibility trial of NIDUS-Professional, a manualised remote dementia training intervention for homecare workers (HCWs), delivered alongside an individualised intervention for clients living with dementia and their family carers (NIDUS-Family). The process evaluation reports on: (i) intervention reach, dose and fidelity; (ii) contexts influencing agency engagement and (iii) alignment of findings with theoretical assumptions about how the intervention might produce change. METHODS: We report proportions of eligible HCWs receiving any intervention (reach), number of sessions attended (dose; attending ≥4/6 main sessions was predefined as adhering), intervention fidelity and adherence of clients and carers to NIDUS-Family (attending all 6-8 planned sessions). We interviewed HCWs, managers, family carers and facilitators. We integrated and thematically analysed, at the homecare agency level, qualitative interview and intervention recording data. RESULTS: 32/141 (23%) of eligible HCWs and 7/42 (17%) of family carers received any intervention; most who did adhered to the intervention (89% and 71%). Intervention fidelity was high. We analysed interviews with 20/44 HCWs, 3/4 managers and 3/7 family carers, as well as intervention recordings involving 32/44 HCWs. All agencies reported structural challenges in supporting intervention delivery. Agencies with greater management buy-in had higher dose and reach. HCWs valued NIDUS-Professional for enabling group reflection and peer support, providing practical, actionable care strategies and increasing their confidence as practitioners. CONCLUSION: NIDUS-Professional was valued by HCWs. Agency management, culture and priorities were key barriers to implementation; we discuss how to address these in a future trial.

Feasibility and acceptability of NIDUS-professional, a training and support intervention for homecare workers caring for clients living with dementia: a cluster-randomised feasibility trial.

INTRODUCTION: In the first randomised controlled trial of a dementia training and support intervention in UK homecare agencies, we aimed to assess: acceptability of our co-designed, manualised training, delivered by non-clinical facilitators; outcome completion feasibility; and costs for a future trial. METHODS: This cluster-randomised (2:1) single-blind, feasibility trial involved English homecare agencies. Intervention arm agency staff were offered group videocall sessions: 6 over 3 months, then monthly for 3 months (NIDUS-professional). Family carers (henceforth carers) and clients with dementia (dyads) were offered six to eight complementary, individual intervention sessions (NIDUS-Family). We collected potential trial measures as secondary outcomes remotely at baseline and 6 months: HCW (homecare worker) Work-related Strain Inventory (WRSI), Sense of Competence (SoC); proxy-rated Quality of Life (QOL), Disability Assessment for Dementia scale (DAD), Neuropsychiatric Inventory (NPI) and Homecare Satisfaction (HCS). RESULTS: From December 2021 to September 2022, we met agency (4 intervention, 2 control) and HCWs (n = 62) recruitment targets and recruited 16 carers and 16/60 planned clients. We met a priori progression criteria for adherence (≥4/6 sessions: 29/44 [65.9%,95% confidence interval (CI): 50.1,79.5]), HCW or carer proxy-outcome completion (15/16 (93.8% [69.8,99.8]) and proceeding with adaptation for HCWs outcome completion (46/63 (73.0% [CI: 60.3,83.4]). Delivery of NIDUS-Professional costs was £6,423 (£137 per eligible client). WRSI scores decreased and SoC increased at follow-up, with no significant between-group differences. For intervention arm proxy-rated outcomes, carer-rated QOL increased, HCW-rated was unchanged; carer and HCW-rated NPI decreased; DAD decreased (greater disability) and HCS was unchanged. CONCLUSION: A pragmatic trial is warranted; we will consider using aggregated, agency-level client outcomes, including neuropsychiatric symptoms.

An exploration of how specialist dementia nurses perceive and maintain the skills and competencies that frame their specialism: A qualitative survey.

Background: UK policy for complex and long-term health conditions including dementia has recommended that specialist nursing intervention is offered across the trajectory of the condition, but there is a lack of agreement regarding the skills and competencies that specialist nurses are expected to possess. Admiral Nurses are the largest UK group of specialist dementia nurses. Objective: To explore how Admiral Nurses met and were supported to meet competencies as defined in the Admiral Nurse Competency Framework, and to develop and maintain skills as dementia specialists. Design: Cross-sectional, semi-structured survey. Setting: Online national survey. Participants: Admiral (specialist dementia) Nurses. Methods: We co-designed our survey with Admiral Nurses; then invited Admiral Nurses to complete it in 2022-23 Data were analysed thematically. Results: 68 (20% of all Admiral Nurses) completed the survey; most were female (85.2%), from a white ethnic group (88.2%); they reported on average 24 years of nursing experience. We identified three themes in responses: 1.Having time and skills for meaningful support, explored how participants were resourced with time and skills to understand and address family carer client needs by active listening, tailoring person-centred support, and "walking alongside" families. 2.Partnering family carers, concerned how they co-designed interventions with family carers, learning from these collaborative partnerships where expertise was shared. 3.Practice and peer-based learning, explored how participants took responsibility for using available training, peer learning and self-reflection to develop their practice. Conclusions: Admiral Nurse roles enabled respondents to develop as autonomous practitioners and to access resources that supported them to build and sustain their dementia specialist practice. Learning was practice based, through partnerships with family carer clients, peer support and self-directed learning. Specialist nursing models may help address the global health workforce emergency, through enabling creative practice development and valued roles that support retention of experienced nurses.

A psychosocial goal-setting and manualised support intervention for independence in dementia (NIDUS-Family) versus goal setting and routine care: a single-masked, phase 3, superiority, randomised controlled trial.

BACKGROUND: Although national guidelines recommend that everyone with dementia receives personalised post-diagnostic support, few do. Unlike previous interventions that improved personalised outcomes in people with dementia, the NIDUS-Family intervention is fully manualised and deliverable by trained and supervised, non-clinical facilitators. We aimed to investigate the effectiveness of home-based goal setting plus NIDUS-Family in supporting the attainment of personalised goals set by people with dementia and their carers. METHODS: We did a two-arm, single-masked, multi-site, randomised, clinical trial recruiting patient-carer dyads from community settings. We randomly assigned dyads to either home-based goal setting plus NIDUS-Family or goal setting and routine care (control). Randomisation was blocked and stratified by site (2:1; intervention to control), with allocations assigned via a remote web-based system. NIDUS-Family is tailored to goals set by dyads by selecting modules involving behavioural interventions, carer support, psychoeducation, communication and coping skills, enablement, and environmental adaptations. The intervention involved six to eight video-call or telephone sessions (or in person when COVID-19-related restrictions allowed) over 6 months, then telephone follow-ups every 2-3 months for 6 months. The primary outcome was carer-rated goal attainment scaling (GAS) score at 12 months. Analyses were done by intention to treat. This trial is registered with the ISRCTN registry, ISRCTN11425138. FINDINGS: Between April 30, 2020, and May 9, 2021, we assessed 1083 potential dyads for eligibility, 781 (72·1%) of whom were excluded. Of 302 eligible dyads, we randomly assigned 98 (32·4%) to the control group and 204 (67·5%) to the intervention group. The mean age of participants with dementia was 79·9 years (SD 8·2), 169 (56%) were women, and 133 (44%) were men. 247 (82%) dyads completed the primary outcome, which favoured the intervention (mean GAS score at 12 months 58·7 [SD 13·0; n=163] vs 49·0 [14·1; n=84]; adjusted difference in means 10·23 [95% CI 5·75-14·71]; p<0·001). 31 (15·2%) participants in the intervention group and 14 (14·3%) in the control group experienced serious adverse events. INTERPRETATION: To our knowledge, NIDUS-Family is the first readily scalable intervention for people with dementia and their family carers that improves attainment of personalised goals. We therefore recommend that it be implemented in health and care services. FUNDING: UK Alzheimer's Society.

Risk assessment for people living with dementia: a systematic review.

OBJECTIVE: This systematic review identified key components of risk assessment for people with dementia, examined attitudes toward risk identification and risk assessment, and appraised existing risk assessment tools. METHODS: Systematic searches of five databases on two platforms (EBSCO, OVID) and gray literature databases (Open Grey, Base) were conducted. Studies were screened for inclusion based on predetermined eligibility criteria and quality assessed using the Mixed Methods Appraisal Tool. Findings were tabulated and synthesized using thematic synthesis. RESULTS: Our review found people with dementia, their family carers, and healthcare professionals differed in how risk is conceptualized, with views being shaped by media perceptions, personal experiences, socio-cultural influences, dementia knowledge, and dementia severity. We found that mobilization (causing falls inside and getting lost outside) is the most frequently identified risk factor. Our findings show people with dementia are generally risk-tolerant, while healthcare professionals may adopt risk-averse approaches because of organizational requirements. We found factors that disrupt daily routines, living and caring arrangements, medication management, and unclear care pathways contribute toward adverse risk events. We discovered that most studies about risk and risk assessment scales did not consider insight of the person with dementia into risks although this is important for the impact of a risk. No risk instrument identified had sufficient evidence that it was useful. CONCLUSION: Accurate risk assessment and effective communication strategies that include the perspectives of people with dementia are needed to enable risk-tolerant practice. No risk instrument to date was shown to be widely acceptable and useful in practice.

Specialist dementia nursing models and impacts: a systematic review.

PURPOSE OF REVIEW: Dementia policy priorities recommend that people who are living with dementia and their family should have access to support and interventions delivered by dementia specialists, including specialist nurses. However, specialist dementia nursing models and role-related competencies are not clearly defined. We systematically review the current evidence regarding specialist dementia nursing models and their impacts. RECENT FINDINGS: Thirty-one studies from across three databases, and grey literature were included in the review. One framework defining specific specialist dementia nursing competencies was found. We did not find convincing evidence of the effectiveness of specialist nursing dementia services, relative to standard models of care from the current, limited evidence base, although families living with dementia valued it. No Randomised Controlled Trial (RCT) has compared the impact of specialist nursing on client and carer outcomes relative to less specialist care, although one nonrandomised study reported that specialist dementia nursing reduces emergency and inpatient service use compared with a usual care group. SUMMARY: Current models of specialist dementia nursing are numerous and heterogeneous. Further exploration of the specialist nursing skills and the impact of specialist nursing interventions is needed to usefully inform workforce development strategies and clinical practice.

Caring for people living with dementia in their own homes: A qualitative study exploring the role and experiences of registered nurses within a district nursing service in the UK.

BACKGROUND: In the UK, district nursing services (DNS) deliver care to people intheir own homes and have regular contact with people with dementia. Research conducted with nurses working in similar roles outside the UK suggests their contribution to high quality dementia care is limited by compassion fatigue, lack of dementia training and low levels of confidence. However, there is a paucity of research exploring the role and learning and support needs of nurses within DNS. OBJECTIVES: The aim was to gain insight into the role and experiences of nurses caring for people living with dementia at home. METHODS: The study was informed by a descriptive phenomenological approach. Semi-structured interviews were conducted with a purposive sample of ten nurses working in DNS. Data were analysed thematically. RESULTS: Five main themes were identified: 'Home as a care setting' reflected how delivering home-based care shaped participants experiences of caring for people with dementia; 'Taking it in their stride' revealed how participants adapted and responded to the complexity of care needs for people with dementia; 'Complexity and unpredictability' related to the unpredictable nature of people with dementia's care needs and the impact this had on participants' workloads; 'Expertise and support within the wider team' detailed which networks nurses used for advice and support to manage the complex needs of people living with dementia at home; 'Specialist support' identified the need for structural changes and resources to enable the nurses to deliver the care needed. CONCLUSIONS: This study enables better understanding of the role of DNS in supporting people with dementia to live at home. This is important for defining how dementia care can become effectively integrated into primary care. Recommendations include improved models of care, which factor in specialist nurses, additional time for home visits and greater emphasis on education and training. IMPLICATIONS FOR PRACTICE: Improved models of working that factor in additional time and staffing such as specialist nurses in dementia and palliative care would allow DNS to meet the needs of people with dementia more effectively.

Achieving Quality and Effectiveness in Dementia Using Crisis Teams (AQUEDUCT): a study protocol for a randomised controlled trial of a Resource Kit.

BACKGROUND: Improving care at home for people with dementia is a core policy goal in the dementia strategies of many European countries. A challenge to effective home support is the occurrence of crises in the care of people with dementia which arise from changes in their health and social circumstances. Improving the management of these crises may prevent hospital admissions and facilitate better and longer care at home. This trial is part of a National Institute for Health Research funded programme, AQUEDUCT, which aims to improve the quality and effectiveness of teams working to manage crises in dementia. METHODS/DESIGN: It is a pragmatic randomised controlled trial of an online Resource Kit to enhance practice in teams managing crises in dementia care. Thirty teams managing mental health crises in dementia in community settings will be randomised between the Resource Kit intervention and treatment as usual. The primary outcome measure is psychiatric admissions to hospital for people with dementia in the teams' catchment area recorded 6 months after randomisation. Other outcomes include quality of life measures for people with dementia and their carers, practitioner impact measures, acute hospital admissions and costs. To enhance understanding of the Resource Kit intervention, qualitative work will explore staff, patient and carers' experience. DISCUSSION: The Resource Kit intervention reflects current policy to enable home-based care for people with dementia by addressing the management of crises which threaten the viability of care at home. It is based upon a model of best practice for managing crises in dementia designed to enhance the quality of care, developed in partnership with people with dementia, carers and practitioners. If the Resource Kit is shown to be clinically and cost-effective in this study, this will enhance the probability of its incorporation into mainstream practice. TRIAL REGISTRATION: ISRCTN 42855694 ; Registered on 04/03/2021; Protocol number: 127686/2020v9; Research Ethics Committee, 09/03/2021, Ref 21/WM/0004; IRAS ID: 289982.

What are the experiences and the perceptions of service users attending Emergency Department for a mental health crisis? A systematic review.

Historically, dualistic healthcare systems have resulted in limited mental healthcare provision within physical health settings, with service users reporting poor care specifically while attending emergency departments (EDs) in a mental health crisis. Modern approaches to healthcare recognize these inequalities and are moving towards integrating healthcare systems that allow more holistic and seamless experiences for service users. This mixed-method review examines the experiences and perceptions of service users attending EDs for a mental health crisis. Systematic searches of eight databases on two platforms (EBSCO, OVID) and grey literature databases (Open Grey, Base) were conducted. Studies were systematically screened for inclusion based on predetermined eligibility criteria and quality assessed using the Mixed Methods Appraisal Tool. Findings were tabulated and synthesized using thematic synthesis. Ten studies consisting of qualitative and mixed-method designs were included in the review. Five overarching themes emerged from the synthesis: social constructs, service provider, service provision, effectiveness, and emotional impact. The findings from this review show that service users continue to have negative experiences in EDs due to stigmatizing attitudes and low skill in managing mental health needs, whereas more positive experiences are attributed to the availability of mental health liaison services. Tackling stigma, improving communication and staff training, providing calm environments, and addressing structural issues that promote better interagency working and reduce gaps in services are needed to improve mental health service user experience. Future research should focus on trauma-informed approaches in EDs to improve person-centred care for service users experiencing a mental health crisis.

The Bubble of Normalisation: A Qualitative Study of Carers of People With Dementia Who Do Not Seek Help for a Diagnosis.

OBJECTIVE: Improving dementia diagnosis rates are a key feature of dementia strategy and policy worldwide. This study aimed to explore the experience of carers of people diagnosed with dementia during or following a hospital admission in order to identify factors that had prevented them from seeking help beforehand. Semi-structured interviews were conducted with 12 informal carers including adults caring for a parent, a friend or a spouse diagnosed with dementia between 2010-2019, following an acute hospital admission for a physical health problem, having not sought help previously. MAIN FINDINGS: Carers created a 'bubble of normalisation' around themselves and the person living with dementia (PLWD) to reject the label of dementia and protect the PLWD from a loss of independence, discrimination and prejudice they felt would be the result of a diagnosis. Carers struggled to talk to the PLWD about dementia reinforcing denial and stigma. Post-diagnosis carers felt unsupported and questioned the value of diagnosis. PRINCIPAL CONCLUSIONS: Stigma related to images of dementia as a disease that takes away independence and identity prevented discussion about dementia between carers and the PLWD. A lack of open discussion about memory concerns between health care professionals and carers also served to delay diagnosis.

Clinical and cost-effectiveness of a New psychosocial intervention to support Independence in Dementia (NIDUS-family) for family carers and people living with dementia in their own homes: a randomised controlled trial.

BACKGROUND: Most people living with dementia want to remain living in their own homes and are supported to do so by family carers. No interventions have consistently demonstrated improvements to people with dementia's life quality, functioning, or other indices of living as well as possible with dementia. We have co-produced, with health and social care professionals and family carers of people with dementia, a new intervention (NIDUS-family). To our knowledge, NIDUS-family is the first manualised intervention that can be tailored to personal goals of people living with dementia and their families and is delivered by facilitators without clinical training. The intervention utilizes components of behavioural management, carer support, psychoeducation, communication and coping skills training, enablement, and environmental adaptations, with modules selected to address dyads' selected goals. We will evaluate the effect of NIDUS-family and usual care on goal attainment, as measured by Goal Attainment Scaling (GAS) rated by family carers, compared to usual care alone at 12-month follow-up. We will also determine whether NIDUS-family and usual care is more cost-effective than usual care alone over 12 months. METHODS: A randomised, two-arm, single-masked, multi-site clinical trial involving 297 people living with dementia-family carer dyads. Dyads will be randomised 2:1 to receive the NIDUS-family intervention with usual care (n = 199) or usual care alone (n = 98). The intervention group will be offered, over 1 year, via 6-8 video call or telephone sessions (or face to face if COVID-19 restrictions allow in the recruitment period) in the initial 6 months, followed by telephone follow-ups every 1-2 months to support implementation, with a trained facilitator. DISCUSSION: Increasing the time lived at home by people living with dementia is likely to benefit lives now and in the future. Our intervention, which we adapted to include remote delivery prior to trial commencement due to the COVID-19 pandemic, aims to address barriers to living as well and as independently as possible that distress people living with dementia, exacerbate family carer(s) stress, negatively affect relationships, lead to safety risks, and frequently precipitate avoidable moves to a care home. TRIAL REGISTRATION: International Standard Randomised Controlled Trials Number ISRCTN11425138 . Registered on 7 October 2019.

Needs of older persons living in long-term care institutions: on the usefulness of cluster approach.

BACKGROUND: Long-term care units' residents do not constitute a homogeneous population. Providing effective care, tailored to individual needs, is crucial in this context. It can be facilitated by suitable tools and methods, which include needs assessment along with the physical, psychological and social aspects of care. We thus applied a cluster approach to identify their putative groupings to enable the provision of tailored care. METHODS: The needs of 242 residents of care homes in four Polish cities (Poznan, Wroclaw, Bialystok and Lublin), aged 75-102 years (184 females), with the Mini-Mental State Examination (MMSE) score ≥ 15 points, were assessed with the CANE (Camberwell Assessment of Need for the Elderly) questionnaire. Their independence in activities of daily living was evaluated by the Barthel Index (BI), and symptoms of depression by the Geriatric Depression Scale (GDS). The results of MMSE, BI and GDS were selected as variables for K-means cluster analysis. RESULTS: Cluster 1 (C1), n = 83, included subjects without dementia according to MMSE (23.7 ± 4.4), with no dependency (BI = 85.8 ± 14.4) and no symptoms of depression (GDS = 3.3 ± 2.0). All subjects of cluster 2 (C2), n = 87, had symptoms of depression (GDS = 8.9 ± 2.1), and their MMSE (21.0 ± 4.0) and BI (79.8 ± 15.1) were lower than those in C1 (p = 0.006 and p = 0.046, respectively). Subjects of cluster 3 (C3), n = 72, had the lowest MMSE (18.3 ± 3.1) and BI (30.6 ± 18,8, p < 0.001 vs. C1 & C2). Their GDS (7.6 ± 2.3) were higher than C1 (p < 0.001) but lower than C2 (p < 0.001). The number of met needs was higher in C2 than in C1 (10.0 ± 3.2 vs 8.2 ± 2.7, p < 0.001), and in C3 (12.1 ± 3.1) than in both C1 and C2 (p < 0.001). The number of unmet needs was higher in C3 than in C1 (1.2 ± 1.5 vs 0.7 ± 1.0, p = 0.015). There were also differences in the patterns of needs between the clusters. CONCLUSIONS: Clustering seems to be a promising approach for use in long-term care, allowing for more appropriate and optimized care delivery. External validation studies are necessary for generalized recommendations regarding care optimization in various regional perspectives.

Development of an Evidence-Based Best Practice Model for Teams Managing Crisis in Dementia: Protocol for a Qualitative Study.

BACKGROUND: Teams working in the community to manage crisis in dementia currently exist, but with widely varying models of practice, it is difficult to determine the effectiveness of such teams. OBJECTIVE: The aim of this study is to develop a "best practice model" for dementia services managing crisis, as well as a set of resources to help teams implement this model to measure and improve practice delivery. These will be the best practice tool and toolkit to be utilized by teams to improve the effectiveness of crisis teams working with older people with dementia and their caregivers. This paper describes the protocol for a prospective study using qualitative methods to establish an understanding of the current practice to develop a "best practice model." METHODS: Participants (people with dementia, caregivers, staff members, and stakeholders) from a variety of geographical areas, with a broad experience of crisis and noncrisis work, will be purposively selected to participate in qualitative approaches including interviews, focus groups, a consensus workshop, and development and field testing of both the best practice tool and toolkit. RESULTS: Data were collected between October 2016 and August 2018. Thematic analysis will be utilized to establish the current working of teams managing crisis in dementia in order to draw together elements of the best practice. CONCLUSIONS: This is the first study to systematically explore the requirements needed to fulfill effective and appropriate home management for people with dementia and their caregivers at the time of mental health crisis, as delivered by teams managing crisis in dementia. This systematic approach to development will support greater acceptability and validity of the best practice tool and toolkit and lay the foundation for a large scale trial with teams managing crisis in dementia across England to investigate the effects on practice and impact on service provision, as well as the associated experiences of people with dementia and their caregivers. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR1-10.2196/14781.

Developing a model of best practice for teams managing crisis in people with dementia: a consensus approach.

BACKGROUND: Teams delivering crisis resolution services for people with dementia and their carers provide short-term interventions to prevent admission to acute care settings. There is great variation in these services across the UK. This article reports on a consensus process undertaken to devise a Best Practice Model and evaluation Tool for use with teams managing crisis in dementia. METHODS: The Best Practice Model and Tool were developed over a three stage process: (i) Evidence gathering and generation of candidate standards (systematic review and scoping survey, interviews and focus groups); (ii) Prioritisation and selection of standards (consultation groups, a consensus conference and modified Delphi process); (iii) Refining and operationalising standards (consultation group and field-testing). RESULTS: One hundred sixty-five candidate standards arose from the evidence gathering stage; were refined and reduced to 90 through a consultation group exercise; and then reduced to 50 during the consensus conference and weighted using a modified Delphi process. Standards were then operationalised through a clinical consultation group and field-tested with 11 crisis teams and 5 non-crisis teams. Scores ranged from 48 to 92/100. The median score for the crisis teams was 74.5 (range 67-92), and the median score for non-crisis teams was 60 (range 48-72). CONCLUSIONS: With further psychometric testing, this Best Practice Model and Tool will be ideal for the planning, improvement and national benchmarking of teams managing dementia crises in the future.

Persistent barriers and facilitators to seeking help for a dementia diagnosis: a systematic review of 30 years of the perspectives of carers and people with dementia.

OBJECTIVE: To identify barriers and facilitators to help seeking for a dementia diagnosis from the perspective of carers and people with dementia. DESIGN: A systematic review of the literature was conducted according to the PRISMA guidelines (PROSPERO protocol registration CRD42018092524). Nine electronic databases were searched for qualitative, quantitative, and mixed methods primary research studies. Two independent reviewers screened titles and abstracts, full texts of eligible studies, and conducted quality appraisal of included articles. A convergent qualitative synthesis approach was used. RESULTS: From 7496 articles, 35 papers representing 32 studies from 1986 to 2017 were included. Studies originated from 13 countries across 4 continents. Barriers and facilitators were reported predominantly by carers. A small number of studies included people with dementia. Barriers included denial, stigma and fear, lack of knowledge, normalization of symptoms, preserving autonomy, lack of perceived need, unaware of changes, lack of informal network support, carer difficulties, and problems accessing help. Facilitators included recognition of symptoms as a problem, prior knowledge and contacts, and support from informal network. CONCLUSIONS: Studies from a 30-year period demonstrated that barriers to help seeking persist globally, despite increasing numbers of national dementia policies. Barriers and facilitators rarely existed independently demonstrating the complexity of help seeking for a diagnosis of dementia. Multiple barriers compounded the decision-making process and more than one facilitator was often required to overcome them. Multi-faceted interventions to reduce barriers are needed, one approach would be a focus on the development of dementia friendly communities to reduce stigma and empower people with dementia and carers.

Clinical effectiveness of the START (STrAtegies for RelaTives) psychological intervention for family carers and the effects on the cost of care for people with dementia: 6-year follow-up of a randomised controlled trial.

BACKGROUND: The START (STrAtegies for RelaTives) intervention reduced depressive and anxiety symptoms of family carers of relatives with dementia at home over 2 years and was cost-effective. AIMS: To assess the clinical effectiveness over 6 years and the impact on costs and care home admission. METHOD: We conducted a randomised, parallel group, superiority trial recruiting from 4 November 2009 to 8 June 2011 with 6-year follow-up (trial registration: ISCTRN 70017938). A total of 260 self-identified family carers of people with dementia were randomised 2:1 to START, an eight-session manual-based coping intervention delivered by supervised psychology graduates, or to treatment as usual (TAU). The primary outcome was affective symptoms (Hospital Anxiety and Depression Scale, total score (HADS-T)). Secondary outcomes included patient and carer service costs and care home admission. RESULTS: In total, 222 (85.4%) of 173 carers randomised to START and 87 to TAU were included in the 6-year clinical efficacy analysis. Over 72 months, compared with TAU, the intervention group had improved scores on HADS-T (adjusted mean difference -2.00 points, 95% CI -3.38 to -0.63). Patient-related costs (START versus TAU, respectively: median £5759 v. £16 964 in the final year; P = 0.07) and carer-related costs (median £377 v. £274 in the final year) were not significantly different between groups nor were group differences in time until care home (intensity ratio START:TAU was 0.88, 95% CI 0.58-1.35). CONCLUSIONS: START is clinically effective and this effect lasts for 6 years without increasing costs. This is the first intervention with such a long-term clinical and possible economic benefit and has potential to make a difference to individual carers. DECLARATIONS OF INTEREST: G.L., Z.W. and C.C. are supported by the UCLH National Institute for Health Research (NIHR) Biomedical Research Centre. G.L. and P.R. were in part supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) North Thames at Bart's Health NHS Trust. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. Z.W. reports during the conduct of the study; personal fees from GE Healthcare, grants from GE Healthcare, grants from Lundbeck, other from GE Healthcare, outside the submitted work.

Why do staff and family think differently about quality of life in dementia? A qualitative study exploring perspectives in care homes.

BACKGROUND: Quality of life is important especially in incurable illness. In dementia, we often need proxy reports of quality of life, but we know little about how individuals make their judgements. In care homes, proxies may be staff providing care or relatives, but staff rate quality of life differently to family. To our knowledge, no one has explored this qualitatively, so we used qualitative interviews to explore why staff and family think differently about quality of life. METHODS: We interviewed 12 staff and 12 relatives who had provided proxy ratings of quality of life for people living with dementia in care homes in the Managing Agitation and Raising Quality of life (MARQUE) study. We asked why they had rated the resident's quality of life as "Very Good, Good, Fair, or Poor." Using thematic analysis, we compared staff and relatives' proxy responses. RESULTS: For staff, the concept of quality of life was often viewed synonymously with quality of care, influenced by their sense of responsibility and informed by their professional understanding. For relatives, quality of life was often judged in relation to how the person with dementia lived before diagnosis and was influenced by their perception of loss for the person with dementia and their own adjustment. CONCLUSIONS: Proxy reports were influenced by rater's own contexts and experiences. This can enhance our understanding of widely used research tools, aid the evaluation of intervention outcomes, and indicate possible targets for improving perceived and actual quality of life of people with dementia.