Adapting a Dutch Web-Based Intervention to Support Family Caregivers of People With Dementia in the UK Context: Accelerated Experience-Based Co-Design.

BACKGROUND: Around 700,000 family caregivers provide unpaid care for 900,000 people living with dementia in the United Kingdom. Few family caregivers receive support for their own psychological needs and funding for community respite services has declined. These trends are seen across Europe as demographic and budgetary pressures have intensified due to public spending cuts arising from the 2008 financial crisis and the COVID-19 pandemic. The World Health Organization has prioritized the need to expand the provision of support for caregivers and families of people with dementia by 2025. Web-based interventions have the potential for development as they require modest investment and can be accessed by family caregivers at home. Further cost benefits can be realized by adapting existing interventions with demonstrated effectiveness for new contexts. This paper reports initial findings from the CareCoach study, which is adapting Partner in Balance (PiB), a web-based coaching intervention developed in the Netherlands, for family caregivers in the United Kingdom. OBJECTIVE: This study aims to work with unpaid family caregivers and staff in adapting the Dutch web-based support tool PiB to improve its acceptability and usability for use in the United Kingdom. METHODS: Accelerated Experience-Based Co-Design (AEBCD) was used with caregivers, staff, and core stakeholders. Interviews, workshops, and stakeholder consultations were conducted. Data were analyzed iteratively. Recommendations for the redesign of PiB for use across the United Kingdom were adjudicated by the study Adaptation Working Party. RESULTS: Sixteen caregivers and 17 staff took part in interviews. Thirteen caregivers and 17 staff took part in workshops. Most (n=26) participants were White, female, and retired. All except 4 caregivers (2 male and 2 female) found the PiB's offer of web-based self-help learning acceptable. Caregivers identified complexity and lack of inclusivity in some wording and video resources as problematic. The staff took a stronger perspective on the lack of inclusivity in PiB video resources. Staff and caregivers coproduced new inclusive wording and recommended creating new videos to adapt PiB for the UK context. CONCLUSIONS: AEBCD methods facilitated the engagement of caregivers and staff and advanced the adaptation of the PiB complex intervention. An important addition to the AEBCD method in this process was the work of an Adaptation Working Party, which adjudicated and agreed to new wording where this could not be established in consultation with caregivers and staff. TRIAL REGISTRATION: ISRCTN Registry ISRCTN12540555; https://doi.org/10.1186/ISRCTN12540555.

Social care planning and provision for people with young onset dementia and their families: Protocol for the DYNAMIC study.

BACKGROUND: Social care is vital to quality of life for people with young onset dementia and their families. Yet care is hugely variable, frequently lacking and poorly coordinated. We aim to establish current practice in English social care for people with young onset dementia and co-produce evidence-based recommendations and resources for improvement. METHODS AND ANALYSIS: In Work-Package 1, we will gather qualitative data from 25 people with young onset dementia and/or main supporters residing in England. We will ask them about their experiences of social care (broadly defined, including independent and voluntary sector provision) and suggestions for improvement. In Work-Package 2, we will conduct a short on-line survey with a wide range of staff with a role in adult social care in England. We will find out about current awareness, knowledge and practice and suggestions for improvements. Quantitative and qualitative analysis will provide a picture of current practice. In Work-Package 3, we will use convergence analysis to synthesise the findings from Work-Packages 1 and 2 and present the findings to a stakeholder workshop, to identify feasible priorities for improvement. We will establish what is already known about good practice relating to these key priorities using a scoping review and interviews with professionals. This knowledge will then feed into the co-production of resources and recommendations with key stakeholders to improve social care for people with young onset dementia and their families. DISCUSSION: This study seeks to address a gap in our understanding of social care provision for people with young onset dementia and develop recommendations and practical resources for improvements. The findings will help people with young onset dementia and supporters to receive higher quality social care. TRIAL REGISTRATION: Study registration number: ISRCTN10653250.

Research ethics and collaborative research in health and social care: Analysis of UK research ethics policies, scoping review of the literature, and focus group study.

Current research ethics frameworks were developed on the footprint of biomedical, experimental research and present several pitfalls when applied to non-experimental social sciences. This work explores how the normative principles underpinning policy and regulatory frameworks of research ethics and the related operational processes work in practice in the context of collaborative health and social care research. The work was organised in three phases. First, UK research ethics policy documents were analysed thematically, with themes further organised under the categories of 'Principles' and 'Processes'. Next, we conducted a scoping review of articles about research ethics in the context of collaborative health and social care research, published in English between 2010 and 2022. We then held an exploratory focus group with ten academic researchers with relevant experience to gather their views on how the research ethics system works in practice in England (UK). The thematic framework developed in the first phase supported the analysis of the articles included in the scoping review and of focus group data. The analysis of policy documents identified twelve themes. All were associated to both a principle and a related operational process. The scoping review identified 31 articles. Across these, some themes were barely acknowledged (e.g., Compliance with legislation). Other themes were extensively covered (e.g., The working of Research Ethics Committees), often to discuss issues and limitations in how, in practice, the research ethics system and its processes deal with collaborative research and to suggest options for improvement. Focus group data were largely consistent with the findings of the scoping review. This work provides evidence of the poor alignment between how the research ethics system is normatively expected to work and how it works in practice and offers options that could make research ethics more fit for purpose when addressing collaborative research in health and social care.

Establishing and sustaining high-quality services for people with young onset dementia: the perspective of senior service providers and commissioners.

OBJECTIVES: We aimed to understand the facilitators to developing and sustaining high-quality services for people with young onset dementia (YOD) and their families/supporters. DESIGN: This qualitative study used semi-structured interviews with commissioners and service managers, analyzed using inductive thematic analysis. SETTING: A purposive sample of providers was selected from diverse areas and contrasting YOD services. PARTICIPANTS: Eighteen senior staff from YOD services and two dementia service commissioners took part. MEASUREMENTS: For commissioners, key interview topics were experiences of commissioning YOD services, perceived facilitators or barriers, and how future guidance should be structured for ease of use. For service providers, key topics explored experiences of delivering YOD services; what was achievable or challenging; how the service was funded; how it linked with broader provision for YOD in the area; and how guidance should be structured. RESULTS: Recorded interviews lasted 30-40 minutes. Seven key facilitators to the development and sustaining of YOD services were identified: having knowledgeable, committed local champions; involvement of people living with YOD and family supporters; initial delivery within existing resources; partnership working within and between sectors; having a reflective, supportive organizational culture; gathering evidence of impact; and having wider support and guidance. CONCLUSIONS: Improvements in provision for those with YOD and their families need to be built on understanding of service-level and interpersonal influences as well as on understanding of YOD itself. Our findings highlight a set of facilitators which need to be in place to establish and sustain high-quality YOD services that fit the local context.

Iatrogenic suffering at the end of life: An ethnographic study.

BACKGROUND: Across the developed West, a significant proportion of older people die in hospital It has been argued that an acute hospital setting is not well equipped to support dying well. A palliative approach, which involves recognising and alleviating suffering, might lead to improved quality of care. Yet suffering is an intangible and contested phenomenon and little is known about people's actual experiences of suffering in this clinical setting. AIM: To examine the context of end-of-life care for older people in an acute hospital setting, particularly focusing on the experience of suffering. DESIGN: An observational study, using an ethnographic approach. Data analysis was inductive and iterative. Reflexive analysis included observations and inferences from a participant-observer perspective. Over a period of 3 months in 2016, 186 h of observations of clinical care were carried out. SETTINGS/PARTICIPANTS: The study was carried out on a 30-bedded acute older peoples' hospital ward in the United Kingdom. Participants included 11 patients and 33 members of staff and visitors. RESULTS: Patient suffering was influenced by a range of factors. Delays in recognising and acknowledging dying often led to treatments that were burdensome or futile, exacerbating patient suffering. This was frequently associated with clinical decision-making that did not take into consideration long term concerns such as prognosis or quality of life. Environmental factors in the physical clinical setting such as noise and smell also exacerbated suffering. Finally, aspects of interpersonal interactions, such as paternalistic attitudes or ineffective communication, affected patient experience. CONCLUSION: Acute care for older people in hospital was shaped by an overarching ideology of rescue which predicted and dictated the process of care. Suffering was not restricted to the direct experiences of life-limiting illness but was also associated with the experience of receiving care in an acute hospital setting. Avoiding or minimising iatrogenic suffering is an essential component of compassionate care.

Implementing a home-based personalised cognitive rehabilitation intervention for people with mild-to-moderate dementia: GREAT into Practice.

BACKGROUND: Evidence-based rehabilitative interventions, if widely implemented, could equip people with dementia and their families to manage life with the condition and reduce the need for health and care services. The aim of this translational study, building on evidence from the GREAT randomised controlled trial, was to develop a foundation for implementing the GREAT Cognitive Rehabilitation intervention in community-based services for people with mild-to-moderate dementia. METHODS: Key elements of the implementation strategy were identifying and supporting managerial and clinical leadership, conducting collaborative planning and target-setting, training and supporting practitioners, and providing external facilitation. We developed implementation plans with, and trained staff in, 14 organisations. We subsequently worked closely with 11 of these, 10 National Health Service organisations and one private home care provider, to support practitioners to deliver GREAT Cognitive Rehabilitation over a 12-month period. Outcome evaluation examined the perspectives of local steering group members, practitioners and service users, and the reach, effectiveness and cost of the intervention. RESULTS: Implementation was disrupted by the COVID-19 pandemic, but six organisations completed at least six months of intervention delivery. Forty-one practitioners, mainly occupational therapists, provided the intervention, and 54 people with dementia completed a course of GREAT Cognitive Rehabilitation. Goal attainment by people with dementia exceeded levels of improvement seen in the original trial. People with dementia, carers, practitioners and steering group members all evaluated the intervention positively, and economic analysis indicated that the intervention could be provided at modest cost. However, we identified a range of mainly organisational barriers that impeded implementation and limited the potential for sustainability. CONCLUSIONS: GREAT Cognitive Rehabilitation benefits people with dementia, can be delivered effectively at modest cost in routine services, and is viewed positively by people with dementia, family carers and practitioners. To fully realise these benefits and achieve widespread and sustainable implementation, however, requires sufficient resources and a reorientation of service priorities towards preventive and rehabilitative approaches. TRIAL REGISTRATION: National Institute for Health Research (NIHR) Central Portfolio Management System, registration number 38994.

'Making the most of time during personal care': nursing home staff experiences of meaningful engagement with residents with advanced dementia.

OBJECTIVES: Dementia 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. METHODS: Semi-structured interviews, supplemented by informal conversations, were conducted with 21 staff from seven nursing homes. Inductive thematic analysis identified themes in the accounts. RESULTS: Four 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). CONCLUSION: A 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.

Exploration of meaning, motivation, and preparedness to care amongst the one-child policy generation in China.

OBJECTIVES: In China there is a cultural expectation (Xiao, -filial piety) that offspring should provide care for their parents. However, the sustainability of this is threatened by the impact of the One-Child Policy (OCP) (1979-2015), which has resulted in a diminution in numbers of children available to care, rapid urbanisation and increase in the number of women in employment. In this context, the objective was to explore the motivations, meaning, and preparedness for future caregiving of offspring affected by the OCP. DESIGN AND METHODS: We adopted a constructivist position using a hermeneutic phenomenology approach and interviewed eight current and prospective caregivers aged 20-35 years about future caregiving responsibilities. Data were obtained through in-depth interviews, analysed using reflective Thematic Analysis. RESULTS AND CONCLUSION(S): Three prominent themes: (i) Caregiving beliefs, (ii) Caregiving conditions and (iii) Contextual factors were identified under an overarching theme "Competing pressures-meanings, motivation and preparedness". Despite the inherent stress, participants envisaged providing or organising care in the future to fulfil Xiao, and most viewed long-term care settings as unviable. Ultimately, the findings suggested that the actual performance of caregiving would not always measure up to ideal expectations, resulting in 'filial discrepancy' that is, a gap between societal expectations for caregiving to older relatives and actual caregiving performance. This could adversely impact the caregivers and quality of care provided. The findings highlighted the urgent need to develop culturally attuned services, including education and training for family caregivers, health and social care professionals.

A Systematic Review of the Effectiveness of Educational Interventions in Promoting Person-Centred Care in Dementia Services.

OBJECTIVES: To review evidence about the effectiveness of educational programmes in promoting the delivery of person-centered care by staff in dementia services. METHODS: Several databases were searched, and the methodological quality of identified studies systematically evaluated. A summary mean effect size was calculated for several types of outcome (direct knowledge, applied knowledge, attitudes, self-reported and observed working practices). RESULTS: Eighteen studies were identified. Results were mixed, with findings of no change, significant improvement, and (in attitude) significant deterioration. Effect size was modest for direct knowledge (standardized mean difference = 0.6), but small or negligible for applied knowledge (0.29) and self-reported (0.06) and observed (0.25) working practices. There was a negative effect for attitudes (-0.17). CONCLUSIONS: The quality of evidence was poor. Apart from attitudes, the effect sizes are likely to be overestimates. There was little evidence that education programmes can reliably produce substantial improvements in working practices. CLINICAL IMPLICATIONS: Education alone is unlikely to be sufficient for establishing high standards of person-centered care in services. It needs to be supplemented by steps to ensure that staff develop skills in delivering such care in practice, and by organizational support to ensure staff have sufficient motivation, cues and opportunities for implementation.

Leading by example: Nursing home staff experiences of what facilitates them to meaningfully engage 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.

Lessons learnt from delivering the public and patient involvement forums within a younger onset dementia project.

Including the 'voices' of people living with dementia in a meaningful way is pivotal in shaping local, national and international health and social dementia care research. The Alzheimer's Society (United Kingdom) funded Angela Project (2016-19) was aimed at improving the diagnosis and post-diagnostic support for younger people living with dementia. From the outset, the Project Team ensured that the knowledge and expertise of people living with a younger onset dementia was integral to all decisions taken in respect to overall project design, implementation, and dissemination processes. This was achieved by establishing two project public and patient involvement (PPI) forums; a London PPI Forum and a Bradford-based local PPI Hub. This paper describes how the two groups were formed; the format of the meetings; and the key points learnt by the Project Team from involving people with dementia in all aspects of developing and delivering the Angela Project. Ultimately, the aim is to demonstrate to other researchers in the dementia field how the perspectives of those with a diagnosis can be included in research studies in an active and meaningful way.

A qualitative study exploring the support needs of newly qualified nurses and their experiences of an online peer support intervention.

BACKGROUND: In the transitional period following registration, newly qualified nurses may feel socially isolated and easily overwhelmed by increases in accountability, workplace pressures and the psychological demands of the role. Such experiences place them at risk of burnout and leaving the profession. AIMS: To explore newly qualified nurses' support needs and their experiences of an online peer support intervention. METHOD: Eighteen newly qualified nurses participated in online peer support groups. After 3 months participants took part in interviews exploring their support needs and experiences of the groups. Eight one-to one interviews were conducted between October 2019 and January 2020. Qualitative thematic analysis was used. FINDINGS: Two themes identified were; "The Support needs of newly qualified nurses" with two subthemes, "The role of the newly qualified nurse" and "Unmet support needs"; "The online experience" with three subthemes, "Barriers to participation", "Anticipated benefits" and "Unmet expectations". CONCLUSION: Our findings suggested that there is insufficient support for newly qualified nurses. The newly qualified nurses wanted to use online support to help manage their stress. However, the organisation of online peer support needs careful consideration to ensure participation can be beneficial. IMPACT STATEMENT: Online support requires careful design and clear support from employing organisations to promote improved transition experiences. Further research should focus on evaluating adjusted online support interventions.

Current UK clinical practice in diagnosing dementia in younger adults: compliance with quality indicators in electronic health records from mental health trusts.

OBJECTIVES: To examine current UK practice in diagnosis of patients under 65 with young onset dementia, within 5 years of date of diagnosis, identified from electronic health records of 8 NHS mental health trusts. METHODS: Patients diagnosed with young onset dementia were assembled from the UK-Clinical Record Interactive System, (UK-CRIS) using diagnosis of dementia as the index date. A pre-designed proforma, derived by international Delphi consensus from experts in the field in previous work, was used to assess components of the diagnostic assessment in 402 electronic health records across 8 NHS sites. Information was extracted on key aspects of clinical and physical examination according to both a minimum and gold standard. RESULTS: Percentage compliance rates analysed by NHS site and statement, including compliance for site for minimum standard (11 statements), the additional 20 statements required for Gold standard, and the complete Gold standard set (31 statements) show that the additional 20 statements in the Gold standard had consistently higher compliance rates for every site compared to the minimum set. CONCLUSION: Findings confirmed variation in clinical practice and identified commonly missed items in examination and enquiry compared to expert consensus. This suggests that a template proforma, which contains the key indicators for comprehensive assessment of dementia in young adults according to a quality standard could help support clinicians to improve record keeping and reduce gaps in knowledge.

Helpful post-diagnostic services for young onset dementia: Findings and recommendations from the Angela project.

There is a significant lack of evidence regarding optimum models for service provision in young onset dementia (YOD). Our study aim was to gather detailed information about services experienced as helpful by those with YOD and family carers. The objective was to identify the core features of these services to inform service design, delivery and improvements. A qualitative approach based on appreciative inquiry was used, posing open-ended questions about services experienced as helpful, as part of a national UK survey of people with YOD and carers. We used inductive thematic analysis to analyse the free-text responses. The resulting template was used as a basis for analysis of in-depth follow-up interviews, conducted to acquire greater in-depth understanding. Two hundred and thirty-three survey respondents provided 856 examples of helpful support. Twenty-four follow-up interviews were conducted (two with dyads, so 26 participants in total: 8 with people with YOD, 14 with carers, 2 with dyads). Twelve themes capturing the features of helpful services were clustered into three super-ordinate themes. 'Person-centredness' reflects micro levels of person-professional interaction (positive attitude, flexibility, collaborative, user-friendly materials, and in-person). 'Functional consistency' captures the meso level, demonstrating that services were helpful when organised consistently with needs (age-appropriate, holistic, responsive, and accessible). 'Organisational coherence', at the macro level, emphasises the need for service integration, specialist services and service continuity. Key conclusions are that the needs for flexibility and a collaborative stance may be particularly important for those under 65 years with dementia, who have full lives and are used to being in control; to be age-appropriate, helpful services need to provide activities and opportunities suitable for active middle-aged people; and to be holistic, services need to provide for needs associated with rare dementias and be family-centred. Specialist services need to be commissioned and arrangements need to be stable over time to enable continuity.

Implementation processes in a cognitive rehabilitation intervention for people with dementia: a complexity-informed qualitative analysis.

OBJECTIVES: Healthcare is often delivered through complex interventions. Understanding how to implement these successfully is important for optimising services. This article demonstrates how the complexity theory concept of 'self-organisation' can inform implementation, drawing on a process evaluation within a randomised controlled trial of the GREAT (Goal-oriented cognitive Rehabilitation in Early-stage Alzheimer's and related dementias: a multi-centre single-blind randomised controlled Trial) intervention which compared a cognitive rehabilitation intervention for people with dementia with usual treatment. DESIGN: A process evaluation examined experiences of GREAT therapists and participants receiving the intervention, through thematic analysis of a focus group with therapists and interviews with participants and their carers. Therapy records of participants receiving the intervention were also analysed using adapted framework analysis. Analysis adopted a critical realist perspective and a deductive-inductive approach to identify patterns in how the intervention operated. SETTING: The GREAT intervention was delivered through home visits by therapists, in eight regions in the UK. PARTICIPANTS: Six therapists took part in a focus group, interviews were conducted with 25 participants and 26 carers, and therapy logs for 50 participants were analysed. INTERVENTION: A 16-week cognitive rehabilitation programme for people with mild-to-moderate dementia. RESULTS: 'Self-organisation' of the intervention occurred through adaptations made by therapists. Adaptations included simplifying the intervention for people with greater cognitive impairment, and extending it to meet additional needs. Relational work by therapists produced an emergent outcome of 'social support'. Self-organised aspects of the intervention were less visible than formal components, but were important aspects of how it operated during the trial. This understanding can help to inform future implementation. CONCLUSIONS: Researchers are increasingly adopting complexity theory to understand interventions. This study extends the application of complexity theory by demonstrating how 'self-organisation' was a useful concept for understanding aspects of the intervention that would have been missed by focusing on formal intervention components. Analysis of self-organisation could enhance future process evaluations and implementation studies. TRIAL REGISTRATION NUMBER: ISRCTN21027481.

Drawn from life: Cocreating narrative and graphic vignettes of lived experience with people affected by dementia.

BACKGROUND: The growing literature on Patient and Public Involvement and Engagement (PPIE) and dementia identifies specific problems related to the influence that involvement has on research outcomes, over-reliance on family members as proxies and lack of representation of seldom-heard groups. Adaptations to the PPIE process are therefore needed to make possible the involvement of a broader spectrum of people living with dementia. OBJECTIVE: This study aimed to adapt the PPIE process to make participation in cocreation by people living with dementia accessible and meaningful across a spectrum of cognitive abilities. DESIGN: Narrative elicitation, informal conversation and observation were used to cocreate three vignettes based on PPIE group members' personal experiences of dementia services. Each vignette was produced in both narrative and graphic formats. PARTICIPANTS: Nine people living with dementia and five family members participated in this study. RESULTS: Using enhanced methods and outreach, it was possible to adapt the PPIE process so that not only family members and people with milder cognitive difficulties could participate, but also those with more pronounced cognitive problems whose voices are less often heard. CONCLUSIONS: Making creative adaptations is vital in PPIE involving people living with dementia if we wish to develop inclusive forms of PPIE practice. This may, however, raise new ethical issues, which are briefly discussed. PATIENT OR PUBLIC CONTRIBUTION: People with dementia and their families were involved in the design and conduct of the study, in the interpretation of data and in the preparation of the manuscript.

The scope of carer effects and their inclusion in decision-making: a UK-based Delphi study.

BACKGROUND AND OBJECTIVE: Health and social care may affect unpaid (family) carers' health and wellbeing in addition to patients' lives. It is recommended that such impacts (carer effects) are considered in decision-making. However, the scope of carer effects and range of decisions where carer effects should be considered is uncertain. This study aimed to identify: (i) how different categories of healthcare and social care were perceived to impact on unpaid carers; and (ii) whether there was consensus about when carer effects should be formally considered in decision-making contexts. METHODS: A two round, online Delphi study was conducted with 65 UK-based participants (unpaid carers, care professionals, and researchers) with expertise in dementia, mental health, and stroke. Participants considered two broad forms of 'interventions' (patient treatment and replacement care) and two broad forms of 'organisational change' (staffing and changes in timing/location of care). Participants assessed the likely impacts of these on unpaid carers and whether impacts should be considered in decision-making. RESULTS: Participants predicted interventions and organisational changes would impact on multiple domains of unpaid carers' lives, with 'emotional health' the most likely outcome to be affected. Patient treatment and replacement care services ('interventions') were associated with positive impacts across all domains. Conversely, timing/location changes and staffing changes ('organisational changes') were perceived to have mixed and negative impacts. There was widespread support (80-81 %) for considering carer effects in research studies, funding decisions, and patient decision-making. CONCLUSIONS: This study highlights a perception that carer effects are widespread and important to consider in economic evaluation and decision-making. It highlights the particular need to measure and value effects on carers' emotional health and the need to use a societal perspective to avoid cost shifting to unpaid carers when introducing interventions and making organisational changes.

Exploring newly qualified nurses' experiences of support and perceptions of peer support online: A qualitative study.

AIMS AND OBJECTIVES: To explore newly qualified nurses' support needs and their perceptions of online peer support. BACKGROUND: The experience of being a newly qualified nurse is stressful and isolating. Support from colleagues and peers can enhance perceptions of competence and confidence in newly qualified nurses, improve well-being and aid retention. However, despite initiatives such as preceptorship, support needs may remain unmet in busy clinical environments. Online support has potential to offer a partial solution to professional isolation, but there is a lack of research into how technology can support nurses' emotional and social well-being. DESIGN: A qualitative exploratory study was designed, employing semi-structured focus groups, analysed using thematic analysis. The study is reported in accordance with the COnsolidated criteria for REporting Qualitative research checklist. METHODS: Eight focus groups, supplemented by one individual interview, were conducted with newly qualified nurses between June 2018-January 2019. FINDINGS: Two main themes arose. The first was Drowning, a lot of the time with two sub-themes: (i) Feelings and emotions about being a Newly Qualified Nurse: 'Absolutely terrified' and (ii) Support within the role: 'Somebody you can count on'. The second was Potential advantages and disadvantages of online modality: 'Somebody is going to get in that phone!' which included three sub-themes (i) Potential advantages, (ii) Potential disadvantages and (iii) Preferences and recommendations. CONCLUSIONS: This study demonstrates that if barriers can be overcome, then online support has potential to contribute to newly qualified nurses' well-being. Further research is needed to explore technical and ethical issues around online support and evaluate its effectiveness for newly qualified nurses. RELEVANCE TO CLINICAL PRACTICE: Online support has the potential to add to existing strategies to support nurses during stressful times. This may be particularly relevant when many staff are working under increased pressure due to the COVID-19 pandemic.

Impact of dementia education and training on health and social care staff knowledge, attitudes and confidence: a cross-sectional study.

OBJECTIVES: The aim of this study was to establish the impact of dementia education and training on the knowledge, attitudes and confidence of health and social care staff. The study also aimed to identify the most effective features (content and pedagogical) of dementia education and training. DESIGN: Cross-sectional survey study. Data collection occurred in 2017. SETTINGS: Health and social care staff in the UK including acute care, mental health community care trusts, primary care and care homes. PARTICIPANTS: All health and social care staff who had completed dementia education and training meeting the minimal standards as set by Health Education England, within the past 5 years were invited to participate in an online survey. A total of 668 health and social care staff provided informed consent and completed an online survey, and responses from 553 participants were included in this study. The majority of the respondents were of white British ethnicity (94.4%) and identified as women (88.4%). OUTCOMES: Knowledge, attitude and confidence of health and social care staff. RESULTS: Hierarchical multiple regression analysis was conducted. Staff characteristics, education and training content variables and pedagogical factors were found to account for 29% of variance in staff confidence (F=4.13, p<0.001), 22% of variance in attitude (knowledge) (F=3.80, p<001), 18% of the variance in staff knowledge (F=2.77, p<0.01) and 14% of variance in staff comfort (attitude) (F=2.11, p<0.01). CONCLUSION: The results suggest that dementia education and training has limited impact on health and social care staff learning outcomes. While training content variables were important when attempting to improve staff knowledge, more consideration should be given to pedagogical factors when training is aiming to improve staff attitude and confidence.

The nature of positive post-diagnostic support as experienced by people with young onset dementia.

OBJECTIVES: Studies on service needs of people with young onset dementia have taken a problem-oriented approach with resulting recommendations focusing on reducing service shortcomings. This study aimed to build on 'what works' in real-life practice by exploring the nature of post-diagnostic support services that were perceived positively by younger people with dementia and carers. METHOD: Positive examples of support were gathered between August 2017 and September 2018, via a national survey. Inductive thematic analysis was employed to explore the nature of positively experienced services provided for younger people with dementia, including analysis of what was provided by positively experienced services. RESULTS: Two hundred and thirty-three respondents reported 856 positive experiences of support. Data analysis yielded eight themes regarding the objectives of positive services: Specialist Advice and Information on Young Onset Dementia, Access to Age-appropriate Services, Interventions for Physical and Mental Health, Opportunities for Social Participation, Opportunities to Have a Voice, Enablement of Independence while Managing Risk, Enablement of Financial Stability, and Support Interventions for Family Relationships. CONCLUSION: The study findings (a) suggest that positive services may collectively create an enabling-protective circle that supports YPD to re-establish and maintain a positive identity in the face of young onset dementia, and (b) provide a basis from which future good practice can be developed.