Protocol of a feasibility randomised controlled trial of Empowered Conversations: training family carers to enhance their relationships and communication with people living with dementia.

Background: Communication difficulties can cause frustration, low mood, and stress for people living with dementia and their carer. Carers should be offered training on adapting their communication skills. However, it is not common for skills-based education to examine emotional aspects of care and the effect of dementia on relationships. The Empowered Conversations (EC) training course was developed in response to a gap in service provision and has been adapted to a virtual format (Zoom). It addresses the specific psychological, relationship, and communication needs of informal and family dementia carers. The primary aim of the study is to investigate the feasibility of conducting a multi-centre randomised controlled evaluation trial of EC. Secondary aims include exploring the acceptability of delivering the intervention online and examining the optimum way of establishing cost-effectiveness. Methods: The feasibility trial uses a pragmatic data-collector blind parallel two-group RCT design with two arms (EC intervention plus treatment as usual, and treatment as usual waitlist control). There will be a 2:1 allocation in favour of the EC-training intervention arm. 75 participants will complete baseline outcome measures exploring their role as a carer, including their physical and mental health, attitudes to caring, quality of life, and use of health and social care services. These will be repeated after six-months. Participants allocated to the treatment group who complete the course will be invited to participate in a qualitative interview discussing their experience of EC. Conclusions: The study will investigate recruitment pathways (including facilitators and barriers to recruitment), estimate retention levels and response rates to questionnaires, obtain additional evidence regarding proof of concept, and consider the most appropriate primary outcome measures and methods for evaluating cost-effectiveness. The results of the feasibility study will be used to inform the development of a multicentre randomised controlled trial in the United Kingdom. Registration: ISRCTN15261686 (02/03/2022).

There are 700,000 family and informal carers for people living with dementia in the UK alone. Sixty-four percent of informal carers in England say they have limited support for the range of psychological and social needs they experience. It can be difficult to keep communicating well due to thinking and memory changes that caused by dementia. This can lead to frustration, low-mood and stress for both people living with dementia and their carers. The 6-session online Empowered Conversations course is designed to enable carers to maintain and improve good communication and relationships with those they support. Course facilitators are trained to provide specific communication techniques, ways of managing conflicts, and working with difficult emotions. The course has been tried out over the last 4-years and changes made. Feedback from informal carers indicates it is in an optimum form and we are ready to test it further in a large trial. Before this is done, it is necessary to complete a smaller 'feasibility' trial to check whether such a larger trial is possible. This article explains how the feasibility trial will be carried out. Our 'feasibility' trial will check several things. We want to make sure that carers would be willing to have an only 66% chance of receiving the course straight away, because it is essential to have a comparison group. The remaining 33% of carers would be offered the course 6-months later. We want to ensure that our design is good enough to identify any improvement in carers' well-being, relationships and communication. We will also ask carers to take part in a one-to-one interview about their experiences of the course, including their views on the course being delivered on Zoom.

'I can see what's going on without being nosey ': What matters to people living with dementia about home as revealed through visual home tours.

OBJECTIVES: This paper considers home from the perspective of people living with dementia supporting ongoing discourse around ageing in place and the significance of creating more inclusive communities. METHODS: Forty-six home tour interviews led by people living with dementia were conducted in England and Scotland to better understand the connectivity between home and neighbourhood for people living with dementia. These interviews used a range of participatory and creative approaches including video, photographic images and in situ interviews. Data were analysed via reflexive thematic analysis. RESULTS: Three themes were identified in data analysis. 1. Connected home and neighbourhood, where participants revealed the dynamic relationship between home and neighbourhood; 2. Practices of home, where participants discussed the everyday nature of their homes and routines; and 3. Displaying home and family, which reflected participant's biographical homes in the context of living with dementia. DISCUSSION: The findings show that home holds multiple meanings for people living with dementia. For example, home is understood as a part of the neighbourhood and an extension of the home space into gardens and backyards, thus extending existing discourses that solely focus on the inside of people's homes. For people living with dementia, homes are also sites of negotiation and renegotiation where new meanings are created to reflect the changing nature and context of the home. There is not one fixed solution to these issues. Support and understanding for people living with dementia will need to evolve to adapt to the shifting dynamics and multiple meanings of home.

What matters most: Exploring the everyday lives of people with dementia.

OBJECTIVES: Research on what matters most to people with dementia is crucial for developing tailored interventions and support. This study explored how people with dementia experience their everyday lives, providing insight into what is important to them to live the best they can at home. METHODS: Inspired by a phenomenological approach, open interviews were conducted with 15 people with dementia, supplemented by home tours and walking interviews. Data collection included one to three sessions per participant. Data were analysed using descriptive content analysis and followed the phases of open, axial, and selective coding. A co-researcher group of seven people with dementia was consulted during the analysis to help interpret the emergent findings. FINDINGS: Six dimensions of what matters most in everyday life were identified: 1) Engaging in meaningful activities, which included routines, household chores, leisure, day activities, and volunteering or work; 2) Keeping a sense of connection, in relationships within the home, with family, friends, groups, and the neighbourhood; 3) Having a sense of belonging, which included attachments inside and outside the home, and to cherished objects; 4) Connecting to self, which included the ability to reflect on past experiences, live in the present moment and anticipate the future; 5) Adjusting to ongoing changes, which included alterations in sensory perceptions, perceptions of the physical environment, and navigating shifts in interpersonal dynamics; 6) Being open to help and support, from professionals, community and society. CONCLUSIONS: For people with dementia, everyday life is a continuous balancing act between what matters most and what can be achieved daily. This is not only related to dementia but is also embedded in the wider perspective of life history, relational networks, and the physical environment. This study highlights the importance of identifying what matters most to people with dementia to provide person-centred support.

Retrospective study of more than 5 million emergency admissions to hospitals in England: Epidemiology and outcomes for people with dementia.

INTRODUCTION: People living with dementia (PwD) admitted in emergency to an acute hospital may be at higher risk of inappropriate care and poorer outcomes including longer hospitalisations and higher risk of emergency re-admission or death. Since 2009 numerous national and local initiatives in England have sought to improve hospital care for PwD. We compared outcomes of emergency admissions for cohorts of patients aged 65+ with and without dementia at three points in time. METHODS: We analysed emergency admissions (EAs) from the Hospital Episodes Statistics datasets for England 2010/11, 2012/13 and 2016/17. Dementia upon admission was based on a diagnosis in the patient's hospital records within the last five years. Outcomes were length of hospital stays (LoS), long stays (> = 15 days), emergency re-admissions (ERAs) and death in hospital or within 30 days post-discharge. A wide range of covariates were taken into account, including patient demographics, pre-existing health and reasons for admission. Hierarchical multivariable regression analysis, applied separately for males and females, estimated group differences adjusted for covariates. RESULTS: We included 178 acute hospitals and 5,580,106 EAs, of which 356,992 (13.9%) were male PwD and 561,349 (18.6%) female PwD. Uncontrolled differences in outcomes between the patient groups were substantial but were considerably reduced after control for covariates. Covariate-adjusted differences in LoS were similar at all time-points and in 2016/17 were 17% (95%CI 15%-18%) and 12% (10%-14%) longer for male and female PwD respectively compared to patients without dementia. Adjusted excess risk of an ERA for PwD reduced over time to 17% (15%-18%) for males and 17% (16%-19%) for females, but principally due to increased ERA rates amongst patients without dementia. Adjusted overall mortality was 30% to 40% higher for PwD of both sexes throughout the time-period; however, adjusted in-hospital rates of mortality differed only slightly between the patient groups, whereas PwD had around double the risk of dying within 30 days of being discharged. CONCLUSION: Over the six-year period, covariate-adjusted hospital LoS, ERA rates and in-hospital mortality rates for PwD were only slightly elevated compared to similar patients without dementia and remaining differences potentially reflect uncontrolled confounding. PwD however, were around twice as likely to die shortly after discharge, the reasons for which require further investigation. Despite being widely used for service evaluation, LoS, ERA and mortality may lack sensitivity to changes in hospital care and support to PwD.

Introducing the '3 Fs model of complexity' for people with dementia accessing a NHS mental health inpatient dementia assessment ward: An interpretive description study.

BACKGROUND: In the United Kingdom, the use of the terms 'complex' and 'complexity' alongside dementia is reflected in a number of policy and practice documents. However, there is a lack of evidence that explores how complexity is perceived, constructed and experienced by people with dementia, family carers and practitioners working in the NHS dementia inpatient assessment wards [dementia assessment wards]. OBJECTIVE: To explore the meaning and concept of complexity in dementia from within the setting of a dementia assessment ward and develop a practice model. METHODS: The study was conducted over three phases: 1) an online electronic survey of UK national dementia leaders; 2) individual interviews and a focus group with dementia practitioners in two dementia assessment wards; 3) case studies of four patients with dementia resident on a dementia assessment ward which included their identified family carer/consultee, the named clinician on the ward involved in that person's care and a care records review. RESULTS: The findings highlighted that complexity is constructed through a number of interconnected and interrelated domains that vary in acuity. These findings have been developed into the '3 Fs Model of Complexity' and the 3'Fs' stand for Fixed, Flexible and Fluctuating. The Fixed domain consists of six components which are always present in complexity. The Flexible domain consists of 14 components and a person with dementia may experience any number of Flexible domain components at any one time. The Fluctuating domain highlights that all components have the ability to vary in their acuity. CONCLUSION: The '3 Fs Model of Complexity' may facilitate a more holistic view of a person with dementia than when 'symptoms' are viewed in isolation. Going forward, and subject to further refinement and testing, the '3 Fs Model of Complexity' could help guide the selection of tailored, personalised interventions for people with dementia, including formulation approaches.

Taking time: The temporal politics of dementia, care and support in the neighbourhood.

Dementia is a global health challenge and currently the focus of a coordinated international response articulated through the notion of 'dementia-friendly communities and initiatives' (DFCIs). Yet, while increasing research attention has been paid to the social and spatial dimensions to life with dementia in a neighbourhood setting, the temporalities of dementia have been largely overlooked. This article sets out different aspects of the lived experience of time for people with dementia and unpaid carers, before exploring the temporal politics of formal dementia care and support. The authors show that time is a site for material struggle and a marker of unequal relations of power. People with dementia and unpaid carers are disempowered through access to formal care, and this is illustrated in their loss of (temporal) autonomy and limited options for changing the conditions of the care received. The authors advocate for a time-space configured understanding of the relationship with neighbourhood and foreground a tempo-material understanding of dementia. Set against the backdrop of austerity policy in the UK, the findings reveal that ongoing budgetary restrictions have diminished the capacity for social care to mediate in questions of social justice and inequality, at times even compounding inequity.

Developing a Management Guide (the DemPower App) for Couples Where One Partner Has Dementia: Nonrandomized Feasibility Study.

BACKGROUND: Promoting the health and well-being of couples where one partner has dementia is an overlooked area of care practice. Most postdiagnostic services currently lack a couple-centered approach and have a limited focus on the couple relationship. To help address this situation, we developed a tablet-based self-management guide (DemPower) focused on helping couples enhance their well-being and relationship quality. OBJECTIVE: The aim of this study is to investigate the feasibility and acceptability of the DemPower app. METHODS: A nonrandomized feasibility design was used to evaluate the DemPower intervention over 3 months among couples where a partner had a diagnosis of dementia. The study recruited 25 couples in the United Kingdom and 19 couples in Sweden. Outcome measures were obtained at baseline and postintervention. The study process and interventions were evaluated at various stages. RESULTS: The study was completed by 48% (21/44) of couples where one partner had dementia, of whom 86% (18/21) of couples accessed all parts of the DemPower app. Each couple spent an average of 8 hours (SD 3.35 hours) using the app during the study period. In total, 90% (19/21) of couples reported that all sections of DemPower were useful in addressing various aspects of daily life and helped to focus on how they interacted in their relationship. Of the 4 core subjects on which the DemPower app was structured, home and neighborhood received the highest number of visits. Couples used activity sections more often than the core subject pages. The perception of DemPower's utility varied with each couple's lived experience of dementia, geographic location, relationship dynamics, and opportunities for social interaction. A 5.2-point increase in the dementia quality of life score for people with dementia and a marginal increase in the Mutuality scale (+1.23 points) for caregiver spouses were found. Design and navigational challenges were reported in the DemPower app. CONCLUSIONS: The findings suggest that the DemPower app is a useful resource for couples where one partner has dementia and that the implementation of the app requires the support of memory clinics to reach couples at early diagnosis. TRIAL REGISTRATION: ISRCTN Registry ISRCTN10122979; http://www.isrctn.com/ISRCTN10122979.

Neighbourhoods and dementia: An updated realist review of the qualitative literature to inform contemporary practice and policy understanding.

This realist review of the literature provided a contemporary understanding of neighbourhoods and dementia and described how people living with dementia and their neighbourhood interacted via ongoing place-making and remaking processes. Drawing on 44 articles, neighbourhoods were revealed to have fluid and dynamic qualities where people with dementia used their strength and resources to connect to significant people and places. The review also indicated that the person with dementia-neighbourhood relationship was underpinned by four themes: 'home', 'social interactions', 'activities' and 'transportation'. Further research is encouraged to use innovative, participatory methods to explore the neighbourhood-dementia nexus in depth whilst paying close attention to social inclusion and diversity.

'My father is a gardener ': A systematic narrative review on access and use of the garden by people living with dementia.

In this narrative review we explored existing evidence about people living with dementia accessing and using their garden in both the domestic home and care home settings. The review revealed that gardens enabled people living with dementia to maintain a sense of continuity and identity by connecting to nature, people, and to the moment, whilst managing everyday risks. However, the review also revealed a number of areas where attention and study is urgently required, including: increasing the visibility and presence of people living with dementia in the literature; developing more participatory, creative and co-research designs; and exploring the person living with dementia's denial of access to garden spaces.

A Core Outcome Set for Nonpharmacological Community-Based Interventions for People Living With Dementia at Home: A Systematic Review of Outcome Measurement Instruments.

BACKGROUND AND OBJECTIVES: It is questionable whether existing outcome measurement instruments (OMIs) in dementia research reflect what key stakeholders' value. We attained consensus from more than 300 key stakeholders, including people living with dementia, and identified 13 core outcome items for use in nonpharmacological and community-based interventions for people with dementia living at home. In this systematic review, we review OMIs that have previously been used in dementia care research to determine how, or even if, the 13 core outcome items can be measured. RESEARCH DESIGN AND METHODS: We extracted self-reported OMIs from trials, reviews, and reports of instrument development. Searches were undertaken in the ALOIS database, MEDLINE, PsycINFO, CINAHL, SocINDEX, and COSMIN databases. We aimed to assess the psychometric properties of OMI items for face validity with the core outcome items, content validity, internal consistency, and responsiveness. We held a coresearch workshop involving people living with dementia and care partners in order to ratify the findings. RESULTS: In total 347 OMIs were located from 354 sources. Of these, 76 OMIs met the inclusion criteria. No OMIs were deemed to have sufficient face validity for the core outcome set (COS) items, and no OMIs proceeded to further assessment. The "best" available OMI is the Engagement and Independence in Dementia Questionnaire. DISCUSSION AND IMPLICATIONS: This study provides a practical resource for those designing dementia research trials. Being able to measure the COS items would herald a paradigm shift for dementia research, be responsive to what key stakeholders value and enhance the ability to make comparisons.

Complex care needs and devolution in Greater Manchester: a pilot study to explore social care innovation in newly integrated service arrangements for older people.

Objective The aim of this study was to describe emergent approaches to integrated care for older people with complex care needs and investigate the viability of measuring integrated care. Methods A case study approach was used. Sites were recruited following discussion with senior staff in health and social care agencies. Service arrangements were categorised using a framework developed by the researchers. To investigate joint working within the sites, the development model for integrated care was adapted and administered to the manager of each service. Data were collected in 2018. Results Six case study sites were recruited illustrating adult social care services partnerships in services for older people with home care providers, mental health and community nursing services. Most were established in 2018. Service arrangements were characterised by joint assessment and informal face-to-face discussions between staff. The development of an infrastructure to promote partnership working was evident between adult social care and each of the other services and most developed with home care providers. There was little evidence of a sequential approach to the development of integrated working practices. Conclusion Components of partnerships promoting integrated care have been highlighted and understanding of the complexity of measuring integrated care enhanced. Means of information sharing and work force development require further consideration. What is known about the topic? The devolution of health and social care arrangements in Greater Manchester has aroused considerable interest in much wider arenas. Necessarily much of the focus in available material has been upon strategic development, analysis of broader trends and mechanisms and a concern with changes in the healthcare system. What does this paper add? The findings from this study will enable emerging approaches to be described and codified, and permit the specific social care contribution to the new arrangements to be discerned. The findings are relevant beyond the immediate context of Greater Manchester to wider integrated care. The evidence can be used by commissioners and services, providing a sound basis for further work as service systems develop. What are the implications for practitioners? This research is important because it is one of the first pieces of work to examine the new integrated care arrangements in Greater Manchester. By providing guidance to promote evidence-based practice, this study contributes to service development in Greater Manchester and the achievement of the broad national service objectives of improving user and carer experiences and ensuring value for money.

Neighbourhoods as relational places for people living with dementia.

An increase in the number of people living independently with dementia across the developed world has focused attention on the relevance of neighbourhood spaces for enabling or facilitating good social health and wellbeing. Taking the lived experiences and daily realities of people living with dementia as a starting point, this paper contributes new understanding about the relevance of local places for supporting those living with the condition. The paper outlines findings from a study of the neighbourhood experiences, drawing on new data collected from a creative blend of qualitatively-driven mixed methods with people living in a diverse array of settings across three international settings. The paper details some of the implications of neighbourhoods as sites of social connection based on material from 67 people living with dementia and 62 nominated care-partners. It demonstrates how neighbourhoods are experienced as relational places and considers how people living with dementia contribute to the production of such places through engagement and interaction, and in ways that may be beneficial to social health. We contend that research has rarely focused on the subjective, experiential and 'everyday' social practices that contextualise neighbourhood life for people living with dementia. In doing so, the paper extends empirical and conceptual understanding of the relevance of neighbourhoods as relational sites of connection, interaction, and social engagement for people living with dementia.

Developing the evidence base for evaluating dementia training in NHS hospitals (DEMTRAIN): a mixed-methods study protocol.

INTRODUCTION: Around 70% of acute hospital beds in the UK are occupied by older people, approximately 40% of whom have dementia. Improving the quality of care in hospitals is a key priority within national dementia strategies. Limited research has been conducted to evaluate dementia training packages for staff, and evaluation of training often focuses on immediate, on-the-day training feedback and effects. OBJECTIVES: Our study aims to answer two research questions: (1) How do variations in content, implementation and intensity of staff dementia training in acute hospitals in England relate to health service outcome/process measures and staff outcomes? and (2) What components of staff dementia training are most strongly related to improved patient and staff outcomes? METHODS AND ANALYSIS: Using the principles of programme theory, a mixed-method study will be used to identify mechanisms and the interactions between them, as well as facilitators and barriers to dementia training in hospitals. We will use existing data, such as Hospital Episode Statistics, alongside two surveys (at hospital and staff level).We will recruit up to 193 acute hospitals in England to participate in the hospital level survey. We aim to recruit up to 30 staff members per hospital, from a random sample of 24 hospitals. In addition, we will explore the cost-effectiveness of dementia training packages and carry out an in-depth case study of up to six hospitals. ETHICS AND DISSEMINATION: The study has been reviewed and approved by the Faculty of Health and Medicine Research Ethics Committee (FHMREC 17056) and Health Research Authority (Integrated Research Approval System (IRAS) ID 242166: REC reference 18/HRA/1198). We plan to develop both standard (eg, academic publications, presentations at conferences) and innovative (eg, citizen scientist web portals, online fora, links with hospitals and third sector organisations) means of ensuring the study findings are accessible and disseminated regionally, nationally and internationally.

Academic reawakening: Situated experiences of undertaking a post graduate masters course in dementia.

Master's level education can play important function in developing the knowledge and skills for nurses and allied professionals working in advanced roles in dementia care. However, little is known about the challenges experienced by professionals when making the transition to post-graduate study. This was a qualitative study comprising individual interviews with 15 graduates, nine of whom were nurses, who had experience of attending a part-time Master's in Dementia Care in the Northwest of England. Four sequential themes emerged from the data: 'Deciding what to do', 'Taking it on', 'Keeping going' and 'Endings and New beginnings'. Findings confirmed that Master's education for nurses and other professionals is significant in developing knowledge and instilling confidence in changing practice. Nevertheless, professionals experienced challenges in juggling the competing demands of education, family and work and were seen to navigate and negotiate their student journey by drawing on internal resources and external supports. The study adds to evidence that Master's level study is likely to benefit practice in dementia care; however, employers and Higher Education Institutions need to develop effective and flexible supports to enable nurses and allied professionals to engage effectively in part-time taught post graduate education.

What is important to people living with dementia?: the 'long-list' of outcome items in the development of a core outcome set for use in the evaluation of non-pharmacological community-based health and social care interventions.

BACKGROUND: Core outcome sets (COS) prioritise outcomes based on their importance to key stakeholders, reduce reporting bias and increase comparability across studies. The first phase of a COS study is to form a 'long-list' of outcomes. Key stakeholders then decide on their importance. COS reporting is described as suboptimal and this first phase is often under-reported. Our objective was to develop a 'long-list' of outcome items for non-pharmacological interventions for people with dementia living at home. METHODS: Three iterative phases were conducted. First, people living with dementia, care partners, health and social care professionals, policymakers and researchers (n = 55) took part in interviews or focus groups and were asked which outcomes were important. Second, existing dementia trials were identified from the ALOIS database. 248 of 1009 pharmacological studies met the inclusion criteria. Primary and secondary outcomes were extracted from a 50% random sample (n = 124) along with eight key reviews/qualitative papers and 38 policy documents. Third, extracted outcome items were translated onto an existing qualitative framework and mapped into domains. The research team removed areas of duplication and refined the 'long-list' in eight workshops. RESULTS: One hundred seventy outcome items were extracted from the qualitative data and literature. The 170 outcome items were consolidated to 54 in four domains (Self-Managing Dementia Symptoms, Quality of Life, Friendly Neighbourhood & Home, Independence). CONCLUSIONS: This paper presents a transparent blueprint for 'long-list' development. Though a useful resource in their own right, the 54 outcome items will be distilled further in a modified Delphi survey and consensus meeting to identify core outcomes.

Involving people living with dementia in research: an accessible modified Delphi survey for core outcome set development.

BACKGROUND: Recent recommendations promote the inclusion of people living with dementia beyond the role of 'participant' to involvement in all areas of the research process. This reflects shifts in dementia studies from 'research on' to 'research with' people living with the condition. In this paper, we describe the design process and features of a modified Delphi survey devised through consultation with people living with dementia. METHODS: This article focusses on consultation with people living with dementia and care partners to design an accessible Delphi survey to facilitate participation in core outcome set development. We used the COINED model of co-research developed through the ESRC/NIHR Neighbourhoods and Dementia Study to structure consultation on three features of modified Delphi design. Consultation was achieved through 1:1 and group sessions with a total of 28 individuals (18 people living with dementia and seven care partners). RESULTS: A flexible, responsive and adaptive approach to ongoing consultation with people living with dementia and care partners through 1:1 face-to-face sessions facilitated: (1) the development of a 3-point non-categorical importance scale; (2) the translation of 54 outcome areas into 'accessible statements' for a two-round Delphi survey administered to five stakeholder groups (people living with dementia, care partners, health and social care professionals, policy-makers and researchers); and (3) the delivery of a Delphi survey. These features of core outcome set development facilitated the involvement of people living with dementia in study design and as research participants in the data collection phase. CONCLUSIONS: Involvement of people living with dementia as a key stakeholder group is not reflected in studies using Delphi survey methods for core outcome set development. Time, resources, researcher expertise and support, underpinned through targeted funding facilitate meaningful and productive inclusive approaches, now an expectation of dementia research. TRIAL REGISTRATION: The study is registered on the COMET Initiative .

Visioning change: Co-producing a model of involvement and engagement in research (Innovative Practice).

The involvement of people living with dementia in research has traditionally been located in the realms of 'subject' or 'participant'. However, there has been an increase in demand for greater transparency by academic bidding teams (particularly within the UK) in demonstrating how people with a lived experience have been and will be involved in the research process. Located within the Economic and Social Research Council/National Institute for Health Research (ESRC/NIHR)-funded Neighbourhoods and Dementia Study (2014-2019), led by The University of Manchester (UK), this paper outlines the development of the CO-researcher INvolvement and Engagement in Dementia (COINED) Model, which was co-produced alongside three independent groups of people living with dementia: Open Doors, the Scottish Dementia Working Group and EDUCATE.