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Evidence suggests that social prescribing might have a positive impact on identity, control, creativity and quality of life in people with dementia. While evidence on the benefits of social prescribing is accumulating, there is a sparsity of research on the experiences of social prescribers. This study aims to identify the challenges that social prescribers face when supporting people with dementia and their families and strategies to address these. A qualitative study involving 24 social prescribers from all regions in England. Semi-structured interviews investigated challenges and strategies that social prescribers experience in their own practice. Data were analysed through thematic analysis. Results on \"Challenges\" and the respective \"Strategies\" are presented in a chronological order that reflects the different stages of contact with and support for the client with dementia, from referral to discharge. This study identified unique barriers that social prescribers face when working with people with dementia, particularly around communication, motivation, engagement and overdependency. It identified person and system-level strategies that can be used to address these challenges. These include expanding opportunities for dementia training, offering in-person support, including social prescribing in annual dementia reviews, and increasing integration of services within Integrated Care Systems and collaborations between health care service providers and with the third sector. Improving delivery and effectiveness of services is crucial to ensure that social prescribing fulfils its ethos of personalised care approach for all, including people with dementia, as envisioned in the NHS long term plan.

Evidence consistently shows that people with advanced dementia experience suboptimal end of life care compared to those with cancer; with increased hospitalisation, inadequate pain control and fewer palliative care interventions. Understanding the views of those service managers and frontline staff who organise and provide care is crucial in order to develop better end of life care for people with dementia. Qualitative interviews and focus groups were conducted from 2013 to 2015 with 33 service managers and 54 staff involved in frontline care, including doctors, nurses, nursing and care home managers, service development leads, senior managers/directors, care assistants and senior care assistants/team leads. All were audio recorded and transcribed verbatim. Participants represented a diverse range of service types and occupation. Transcripts were subject to coding and thematic analysis in data meetings. Analysis of the data led to the development of seven key themes: Recognising end of life (EOL) and tools to support end of life care (EOLC), Communicating with families about EOL, Collaborative working, Continuity of care, Ensuring comfort at EOL, Supporting families, Developing and supporting staff. Each is discussed in detail and comprise individual and collective views on approaches to good end of life care for people with dementia. The significant challenges of providing good end of life care for people with dementia requires that different forms of expertise should be recognised and used; including the skills and knowledge of care assistants. Successfully engaging with people with dementia and family members and helping them to recognise the dying trajectory requires a supportive integration of emotional and technical expertise. The study strengthens the existing evidence base in this area and will be used with a related set of studies (on the views of other stakeholders and observations and interviews conducted in four services) to develop an evidence-based intervention.

Dementia-friendly walking football offers a way of helping people who are less likely to engage with traditional services to participate in physical activity and support their physical, mental and social wellbeing. This addresses a gap in the current provision of post-diagnostic dementia support in the UK. However, there is a lack of evidence around such models of service provision. Through the evaluation of a newly established dementia-friendly walking football initiative provided by a Premier League charitable foundation, we explored the social, physical and mental benefits of dementia-friendly walking football for older males from underserved communities. Using a qualitative, exploratory approach, we held focus groups with service providers and service users to understand their views and experiences of delivering and attending dementia-friendly walking football sessions. A thematic analysis of the focus groups revealed three main themes relating to the importance of football to cultural and individual identity, namely, ‘for the love of the game’, ‘team players’ and ‘a game changer’. We also highlight how a multi-disciplinary, research-based approach to the evaluation of a service and identification of service improvements can both involve and benefit people living with dementia and their families.

There are 900,000 people with dementia in England and Wales. Existing models of post-diagnostic support are unsustainable and unaffordable. The PriDem programme developed a new model of primary care-based dementia care, whereby a Clinical Dementia Lead (CDL) would facilitate systems-level change. To assess barriers and facilitators to implementation of the PriDem intervention. 7 general practices participated in a qualitative process evaluation, as part of the mixed-methods feasibility and implementation study. Practices were located within 4 Primary Care Networks in the North East and South East of England. 26 healthcare professionals, 14 people with dementia and 16 carers linked to participating general practices participated in semi-structured individual and small group interviews. Additional qualitative data were generated through nonparticipant observations and researcher fieldnotes from CDL intervention supervision sessions. Data were analysed using abductive codebook thematic analysis informed by Normalisation Process Theory (NPT). Six themes were generated: 1) The rocky ground of primary care; 2) The power of people; 3) Tension between adaptability and fidelity; 4) Challenging the status quo: reimagining care planning; 5) One size doesn't fit all; 6) Positive effects on people and systems: towards sustainability. Through the lens of NPT we can understand the contextual challenges facing primary care, the mechanisms (e.g., work undertaken by individuals) to overcome those challenges, as well as the potential outcomes of such an approach, in terms of longer-term sustainability of changes made. Despite the pressures facing primary care within England and Wales, meaningful change can be made to practice in the care of people with dementia. The presence of motivated and engaged staff are critical to implementation, as is ensuring understanding of complex interventions, so that fidelity can be maintained. People with dementia and carers benefitted from improved care systems. Commissioners should consider the benefits of a CDL-led approach.

Introduction Despite the advancements in Patient and Public Involvement and Engagement (PPIE), the voices of traditionally underserved groups are still poorly reflected in dementia research. This study aimed to report on a PPIE partnership between academics and members of the public from underserved communities to co‐design Forward with Dementia—Social Care, a resource and information website supporting people receiving a dementia diagnosis. Methods The PPIE partnership was set up in four stages: 1–identifying communities that have been under‐represented from PPIE in dementia research; 2—recruiting PPIE partners from these communities; 3—supporting PPIE partners to become confident to undertake their research roles and 4—undertaking research co‐design activities in an equitable fashion. Results To address under‐representation from PPIE in dementia research we recruited seven PPIE partners from Black, Asian and other minority ethnic groups; lesbian, gay, bisexual, transgender, queer+ communities; remote/rural area; religious minorities and partners living with rare forms of dementia. The partners met regularly throughout the project to oversee new sections for the study website, refine existing content and promote the website within their communities. Conclusion Strategies can be used to successfully recruit and involve PPIE partners from underserved communities in co‐design activities. These include networking with community leaders, developing terms of reference, setting out ‘rules of engagement’, and investing adequate resources and time for accessible and equitable involvement. These efforts facilitate the co‐design of research outputs that reflect the diversity and complexity of UK contemporary society. Patient or Public Contribution This study received support from seven members of the public with lived experience of dementia from communities that have been traditionally underserved in dementia research. These seven members of the public undertook the role of partners in the study. They all equally contributed to the study design, recruitment of participants, development and revision of topic guides for the interviews and development of the website. Three of these partners were also co‐authors of this paper. On top of the activities shared with the other partners, they contributed to write independently of the academic team the section in this paper titled ‘Partners' experiences, benefits and challenges of the partnership’. Further, they provided input in other sections of the paper on a par with the other (academic) co‐authors.

Background People with advanced dementia often experience suboptimal end of life care (EoLC) with inadequate pain control, increased hospitalisation, and fewer palliative care interventions compared to those with cancer. Existing policy, guidance and recommendations are based largely on expert opinion because of a shortage of high quality, empirical research. Previous studies have tended to consider the views and experience of particular groups. Whilst providing important evidence, they do not take into account the diversity of perspectives of different stakeholders. The Supporting Excellence in End of life care in Dementia (SEED) programme involved multiple stakeholder groups and an integrative analysis to identify key components of good EoLC for people with dementia and to inform a new intervention. Methods The views of national experts, service managers, frontline staff, people with dementia and family carers were explored using a range of qualitative methods (semi-structured interviews, focus groups, discussions and observations of routine care). The large dataset comprises 116 interviews, 12 focus groups and 256 h of observation. Each dataset was initially analysed thematically prior to an integrative analysis, which drew out key themes across stakeholder groups. Results Through the integrative analysis seven key factors required for the delivery of good EoLC for people with dementia were identified: timely planning discussions; recognition of end of life and provision of supportive care; co-ordination of care; effective working relationships with primary care; managing hospitalisation; continuing care after death; and valuing staff and ongoing learning. These factors span the entire illness trajectory from planning at a relatively early stage in the illness to continuing care after death. Conclusions This unique study has confirmed the relevance of much of the content of existing end of life frameworks to dementia. It has highlighted seven key areas that are particularly important in dementia care. The data are being used to develop an evidence-based intervention to support professionals to deliver better EoLC in dementia.

IntroductionThe ageing population poses an increasing burden to public health systems, particularly as a result of falls. Falls have been associated with poor gait and balance, as measured by commonly used clinical tests for poor gait and balance. Falls in older adults have the potential to lead to long-term issues with mobility and a fear of falling (FoF). FoF is measured by a variety of instruments; the Falls Efficacy Scale International (FES-I) version is widely used within clinical and research arenas. The ability of the FoF, as measured by the FES-I to predict gait and balance abnormalities (GABAb) has not previously been measured; this study aims to be the first to investigate this prospective relationship.Methods and analysesTo investigate the ability of the FES-I to predict GABAb a mixed-methods approach will be used, including quantitative, qualitative and health economics approaches. Initially the ability of the FES-I to identify poor gait and balance will be investigated, along with whether the measure is able to assess change in gait and balance in response to exercise training. The ability of an online FES-I tool to assess poor gait and balance in an alternative pre-existing online strength and balance programme will also be investigated. Interviews will be carried out to investigate participant experiences and motivations of those that are offered Age UK Strength and Balance Training, along with the views of healthcare professionals and Age UK staff involved within the process.Ethics and disseminationNHS REC Approval has been granted (IRAS ID 314705). Study participation is voluntary; participants will be provided with all necessary information within the participant information sheet, with written consent being sought. Study findings will be disseminated through manuscripts in peer-reviewed journals, at scientific conferences and in a short report to participants and the funding body.

ObjectivesProvision of personalised care planning is a national priority for people with dementia. Research suggests a lack of quality and consistency of care plans and reviews. The PriDem model of care was developed to deliver feasible and acceptable primary care-based postdiagnostic dementia care. We aimed to increase the adoption of personalised care planning for people with dementia, exploring implementation facilitators and barriers.DesignMixed-method feasibility and implementation study.SettingSeven general practices from four primary care networks (PCNs) in the Northeast and Southeast of England.ParticipantsA medical records audit collected data on 179 community-dwelling people with dementia preintervention, and 215 during the intervention year. The qualitative study recruited 26 health and social care professionals, 14 people with dementia and 16 carers linked to participating practices.InterventionClinical dementia leads (CDL) delivered a 12-month, systems-level intervention in participating PCNs, to develop care systems, build staff capacity and capability, and deliver tailored care and support to people with dementia and their carers.Primary and secondary outcome measuresAdoption of personalised care planning was assessed through a preintervention and postintervention audit of medical records. Implementation barriers and facilitators were explored through semistructured qualitative interviews and non-participant observation, analysed using codebook thematic analysis informed by Normalisation Process Theory.ResultsThe proportion of personalised care plans increased from 37.4% (95% CI 30.3% to 44.5%) preintervention to 64.7% (95% CI 58.3% to 71.0%) in the intervention year. Qualitative findings suggest that the flexible nature of the PriDem intervention enabled staff to overcome contextual barriers through harnessing the skills of the wider multidisciplinary team, delivering increasingly holistic care to patients.ConclusionsMeaningful personalised care planning can be achieved through a team-based approach. Although improved guidelines for care planning are required, commissioners should consider the benefits of a CDL-led approach.Trial registration number ISRCTN11677384.

ObjectivesTo evaluate the feasibility and acceptability of a primary care-based intervention for improving post-diagnostic dementia care and support (PriDem), and implementation study procedures.DesignA non-randomised, mixed methods, feasibility study.SettingSeven general practices from four primary care networks (PCNs) in the Northeast and Southeast of England.ParticipantsWe aimed to recruit 80 people with dementia (PWD) and 66 carersInterventionClinical Dementia Leads delivered a 12-month intervention in participating PCNs, to develop care systems, build staff capacity and capability, and deliver tailored care and support to PWD and carers.OutcomesRecruitment and retention rates were measured. A mixed methods process evaluation evaluated feasibility and acceptability of the intervention and study procedures. Using electronic care records, researchers extracted service use data and undertook a dementia care plan audit, preintervention and postintervention, assessing feasibility of measuring the primary implementation outcome: adoption of personalised care planning by participating general practices. Participants completed quality of life, and service use measures at baseline, 4 and 9 months.Results60 PWD (75% of recruitment target) and 51 carers (77% of recruitment target) were recruited from seven general practices across four PCNs. Retention rate at 9 months was 70.0% of PWD and 76.5% of carers. The recruitment approach showed potential for including under-represented groups within dementia. Despite implementation challenges, the intervention was feasible and acceptable, and showed early signs of sustainability. Study procedures were feasible and accessible, although researcher capacity was crucial. Participants needed time and support to engage with the study. Care plan audit procedures were feasible and acceptable.ConclusionsThe PriDem model is an acceptable and feasible intervention. A definitive study is warranted to fully inform dementia care policy and personalised dementia care planning guidance. Successful strategies to support inclusion of PWD and their carers in future research were developed.Trial registration number ISRCTN11677384.

ObjectivesTo explore the impact of COVID-19 on postdiagnostic dementia care and support provision in England and Wales.DesignQualitative research using semistructured interviews, via video or telephone conferencing.SettingServices providing postdiagnostic support across health, social care and the third sector.Participants21 professionals previously recruited to an ongoing research programme on postdiagnostic dementia care (or colleagues, if unavailable).ResultsKey themes identified from the data were: challenges caused by COVID-19; responses to those challenges, including a widespread shift to remote working; and effects of COVID-19 on future postdiagnostic support. Challenges included changing and sometimes conflicting guidelines; a lack of access to support; identifying and responding to emerging needs; emotional and physical impact of COVID-19; and balancing COVID-19 risk with other risks such as deterioration. Some dementia services closed, while others adapted and continued to provide support thus potentially widening existing inequalities. There were also some unintended positive outcomes, including improved cross-sector and multidisciplinary working between professionals.ConclusionDelivering postdiagnostic dementia support during COVID-19 required essential adaptations. While some changes were detrimental to service users, others were identified as potentially beneficial and highly likely to become the new ‘norm’, for example, use of blended approaches, combining virtual and face-to-face work, thus allowing more flexible, integrated care. Our data have implications for policy and practice to improve the response to the lingering effects of COVID-19 as well as creating service provision that is more resilient to future pandemics or other periods of disruption.