Dr Wendy Grosvenor

Background: Globally, dementia care is under strain. Rising rates across ageing populations, coupled with overstretched health and care systems, mean that people living with dementia and their carers are missing out on crucial support. Addressing dementia care is a key priority for the UK government. This has led to a period of care transformation, including the implementation of new dementia support services across integrated care systems (ICS). However, little is known about how these new services work. This evaluation identifies how a dementia care coordinator service, implemented in the largest ICS in England, works for people living with dementia, their carers and the workforce. Methods: A realist evaluation using mixed methods was carried out between 2022-2024. This involved a repeat survey with dementia care coordinators, carried out a year apart, alongside 57 interviews with coordinators, service managers, healthcare practitioners, people living with dementia and their carers. A realist logic of analysis was applied across all data sets. Results: Three broad concepts were identified including: 1) workforce design and organisational culture; 2) meeting the needs of people living with dementia and their carers; and 3) connecting to services and integrating care. A total of 23 context-mechanism-outcome configurations (CMOCs) across these concepts highlighted that whilst tensions exist between the service and wider system, dementia care coordinators ultimately act as bridge builders, connecting people to much-needed support. However, services like this could become a victim of their own success due to increasing caseloads and the risk of staff burnout. Conclusions: The dementia care coordinator service is capable of supporting people who are pre and post-dementia diagnosis despite the care system being under strain. This is a direct result of the bridge building work of the dementia care coordinators. Our findings support evidence-based recommendations for those wanting to implement and sustain a system-wide service and provide evidence for policy makers to consider increased funding for this service nationwide.

Objectives Developing an informed and effective workforce that provides effective and ethical care to people with dementia and their families is an international priority. Here we explore the impact of a novel approach on students of adult nursing. It involved engagement with people with dementia and their carers over 3 years in the Time for Dementia Programme. This research explored students' perceptions of their professional learning and practice. Methods A longitudinal, constructivist grounded theory approach in three phases (3 years) was used. In‐depth interviews were conducted with 12 students of adult nursing following visits with older adults with dementia and their carers in their own homes at 12 months, 24 months and at 36 months. A constant comparative analysis of transcribed interviews was completed. Results A new theory of Whole Sight was identified as representing the impact of the learning that occurred as a consequence of relational learning visits. The core category of New Ways of Seeing dementia represented a broadening of students' views of dementia that encompassed the person's lives and relationships. This led to a person‐centred shift in students' practice. The data suggest that Time for Dementia can help students to be active in their contribution to care and serve as change agents in transforming dementia care. Conclusions The theory of Whole Sight that emerged is a novel and useful contribution to the evidence on community‐based educational initiatives. Visiting people with dementia and their carers at home in training can help develop a workforce that meets their needs.

A dementia care coordinator (DCC) service has recently been implemented across Kent and Medway Integrated Care Board (ICB). DCCs are provided at the Primary Care Network (PCN) level and work closely with GP practice teams. The service is intended to help service users navigate the care system and provide proactive support to mitigate crisis points. However, the value of this service, from key stakeholder perspectives is not yet known. The University of Surrey is conducting a realist evaluation into the service to explore what works, for whom, how, why and under what circumstances. This working paper reports on interim findings from an analysis of: (1) staffing and key performance indicators at the 12 month point in the project (October 2023); and (2) responses to an initial questionnaire sent to coordinators. Findings indicate DCCs enjoy being people-focused in their approach, and value being empathetic, well organised and effective. This may facilitate their ability to make a difference, provide individualised support, advocate for service users, and achieve job satisfaction. Working to high standards, in a joined-up way, with embedded knowledge and networks are important components to this. There is now a crucial need to enhance the support of this workforce (e.g. through formal, recognised training, caseload management, time, and knowledgeable management) in order to ensure sustainability of this service. This evaluation is on-going.

Background and objectives: There is a need to ensure that the future healthcare workforce has the necessary knowledge and skills to deliver high quality compassionate care to the increasing number of people with dementia. Our programme has been set up to address this challenge. In the programme, undergraduate healthcare students (nursing, medical and paramedic) visit a family (person with dementia and their carer) in pairs over a 2-year period. This qualitative study sought to understand the student experience of the programme. Methods: Participants were undergraduate healthcare students who were undertaking our programme at two universities. We sampled for variation in the student participants in order to generate a framework for understanding the student experience of the programme. Students were invited to take part in the qualitative study, and written consent was obtained. Interviews and focus group transcripts were analysed using thematic analysis. Results: Thirty-nine (nursing, medical and paramedic) student participants took part in individual in-depth qualitative interviews and 38 took part in five focus groups. Four key themes were identified from the analysis; relational learning, insight and understanding, challenging attitudes and enhanced dementia practice. Discussion: Student experience of our programme was shown to be positive. The relationship between the students and family was most impactful in supporting student learning, and the subsequent improvement in knowledge, attitudes and practice. Our model of undergraduate dementia education has applicability for other long-term conditions.

Background Dementia care is a key priority for both NHS England and the UK Government. National guidelines highlight the importance of care coordination to address the challenges people living with dementia and their carers can encounter when trying to access the health and care system. To counter these challenges, Kent and Medway Integrated Care Board (ICB) have recently implemented a proactive Dementia Care Coordinator (DCC) service to support people with dementia and their carers from pre diagnosis to end of life care. Aim To understand how the DCC service works, (or not) for whom and in what circumstances. The findings will inform service development and future investment decisions. Design and setting This study uses a realist approach to evaluate the DCC service in Kent and Medway ICB, south-east England, population 1.9 million, comprising 42 Primary Care Networks (groups of general practices) each having a DCC. Methods An initial programme theory will be developed from existing literature, and in collaboration with stakeholders. Mixed methods including questionnaires to DCCs; service provider metrics; and qualitative interviews will be used to collect data on service provider and service user experiences. Interpretive comparative analysis and narrative synthesis including evaluation of service costs against outcomes will produce a refined final programme theory. Results Results from this project will produce evidence-based recommendations to help improve service delivery and possible service expansion. Conclusion This protocol describes a realist evaluation designed to investigate the recently implemented DCC service in Kent and Medway ICB. How this fits in Dementia services in primary care are undergoing a period of transformation. In Kent and Medway, a recent implemented service has been that of the dementia care coordinator, a proactive role to help people living with dementia and carers navigate the care system. Yet challenges exist when implementing a new role and new service into existing primary care organisation. This realist evaluation will explore what works, for whom, how, why and under what circumstances. Findings will provide evidence capable of informing future decisions about the DCC service including how the service can be successfully improved and expanded where appropriate.

Background: With life expectancy continuing to rise in the United Kingdom there is an increasing public health focus on the maintenance of physical independence among all older adults. Identifying interventions that improve physical outcomes in pre-frail and frail older adults is imperative. Methods: A systematic review of the literature 2000 to 2017 following PRISMA guidelines and registered with PROSPERO (no. CRD42016045325). Results: Ten RCT trials fulfilled selection criteria and quality appraisal. The study quality was moderate to good. Interventions included physical activity; nutrition, physical activity combined with nutrition. Interventions that incorporated one or more physical activity components significantly improved physical outcomes in pre-frail and/or frail older adults. Conclusions: Physical activity interventions are key to maintaining independence in pre-frail and frail older adults. A lack of consensus regarding the definition of frailty, and an absence of core measures to assess this means any attempt to create an optimal intervention will be impeded. This absence may ultimately impact on the ability of older and frail adults to live well and for longer in the community.

Background: Net survival rates for cancer are increasing worldwide, placing a strain on health service provision. There is a drive to transfer care of cancer survivors - individuals living with and beyond cancer - to the community and encourage them to play an active role in their own care. Telehealth, the use of technology in remote exchange of data and communication between patients and healthcare professionals, is an important contributor to this evolving model of care and may offer additional benefits to cancer survivors. Telehealth is a complex intervention and understanding patient experiences of it is important in evaluating its impact. However, a wider view of patient experience is lacking as qualitative studies detailing cancer survivor engagement with telehealth have yet to be synthesised. Objective: Systematically identify, appraise and synthesise qualitative research evidence on the experiences of adult cancer survivors participating in telehealth intervention(s), to characterise the patient experience of telehealth interventions for this group. Methods: Medline (PubMed), PsychINFO, CINAHL (Cumulative Index for Nursing and Allied Health Professionals), Embase and Cochrane Central Register of Controlled Trial were searched on 14th August 2015 and 8th March 2016 for English-language papers published between 2006 and 2016. Inclusion criteria were: adult cancer survivors aged 18 and over; cancer diagnosis; experience of participating in a telehealth intervention (defined as remote communication and/or remote monitoring with a healthcare professional(s) delivered by telephone, internet, or hand-held/mobile technology); reporting qualitative data including verbatim quotes. An adapted Critical Appraisal Skill Programme (CASP) Checklist for Qualitative Research was used to assess paper quality. The results section of each included article was coded line by line and all papers underwent inductive analysis, involving comparison, re-examination and grouping of codes to develop descriptive themes. Analytical themes were developed through an iterative process of reflection on, and interpretation of, the descriptive themes within and across studies. Results: 22 papers were included. Three analytical themes emerged, each with three descriptive subthemes: 1. Influence of telehealth on the disrupted lives of cancer survivors a. Convenience b. Independence c. Burden 2. Personalised care in a virtual world a. Time b. Space c. The human factor 3. Remote reassurance – a safety net of healthcare professional connection a. Active connection b. Passive connection c. Slipping through the net Telehealth interventions represent a convenient approach which can potentially minimise treatment burden and disruption to cancer survivors’ lives. Telehealth interventions can facilitate an experience of personalised care and reassurance for those living with and beyond cancer, but it is important to consider individual factors when tailoring interventions to ensure engagement promotes benefit rather than burden. Conclusions: Telehealth interventions can provide cancer survivors with both independence and reassurance; both important for everyday life or wellbeing. Future telehealth interventions need to be developed iteratively and in collaboration with a broad range of cancer survivors to maximise engagement and benefit.

Background Traditional healthcare education typically focuses on short block clinical placements based on acute care, investigations and technical aspects of diagnosis and treatment. It may therefore fail to build the understanding, compassion and person-centred empathy needed to help those with long-term conditions, like dementia. Time for Dementia was developed to address this. Method Parallel group comparison of two cohorts of UK medical students from universities, one participating in Time for Dementia (intervention group) and one not (control group). In Time for Dementia students visit a person with dementia and their family in pairs for 2 hours three times a year for 2 years, the control group received their normal curriculum. Results In an adjusted multilevel model (intervention group n = 274, control n = 112), there was strong evidence supporting improvements for Time for Dementia participants in: total Approaches to Dementia Questionnaire score (coefficient: 2.19, p = 0.003) and its person-centredness subscale (1.32, p = 0.006) and weaker evidence in its hopefulness subscale (0.78, p = 0.070). There was also strong evidence of improvement in the Dementia Knowledge Questionnaire (1.63, p < 0.001) and Dementia Attitudes Scale (total score: 6.55, p < 0.001; social comfort subscale: 4.15, p < 0.001; dementia knowledge subscale: 3.38, p = 0.001) scores. No differences were observed on the Alzheimer's Disease Knowledge Scale, the Medical Condition Regard Scale or the Jefferson Scale of Empathy. Discussion Time for Dementia may help improve the attitudes of medical students towards dementia promoting a person-centred approach and increasing social comfort. Such patient-focused programmes may be a useful complement to traditional medical education.

This paper describes an innovative undergraduate educational initiative called the Time for Dementia programme. It was developed to improve the knowledge, attitudes and skills in dementia among healthcare students. Time for Dementia involves pairs of healthcare students (medical, paramedic, adult and mental health nursing, and allied health professionals) visiting a person with dementia and their carer in their homes over a period of 2 years. The aim of the programme is to enable students to learn with people with dementia and their carers—recognising that people with dementia have unique expertise derived from their experiences. Their personal narratives offer students a unique insight into the subjective experiences of dementia.

Objectives Traditional healthcare education, delivered through a series of time-limited clinical placements, often fails to deliver an understanding of the experiences of those with long-term conditions, a growing issue for healthcare systems. Responses include longitudinal integrated clerkships and senior mentor programmes allowing students' longer placements, continuity of contact and opportunities to learn about chronic illness and patient experience. We review their development and delivery in dementia and present the Time for Dementia (TFD) Programme, a novel 2-year interdisciplinary educational programme. Design The study design involves a scoping review of enhanced placements in dementia for healthcare professionals in training including longitudinal integrated clerkships and senior mentor programmes and a case study of the development of TFD and its evaluation. Results Eight enhanced programmes in dementia were identified and seven in the USA. None were compulsory and all lasted 12 months. All reported positive impact from case study designs but data quality was weak. Building on these, TFD was developed in partnership between the Alzheimer's Society, universities and NHS and made a core part of the curriculum for medical, nursing and paramedic students. Students visit a person with dementia and their family in pairs for 2 h every 3 months for 2 years. They follow a semi-structured interaction guide focusing on experiences of illness and services and complete reflective appraisals. Conclusions We need interprofessional undergraduate healthcare education that enables future healthcare professionals to be able to understand and manage the people with the long-term conditions who current systems often fail. TFD is designed to help address this need.

Background Internationally there are too few suitably skilled registered nurses to meet the demands for dementia care. Research has established low preferences in undergraduate nursing students for working with older people. However, there is limited research on preferences for dementia care. Understanding career preferences is one component of ensuring future workforce capacity. Objective To assess student nurses' preferences during undergraduate training in relation to working with people with dementia. Methods Data from a longitudinal survey collected at two UK universities were analysed (n = 488). Measures included career preferences, demographics, participation in a dementia educational intervention, and measures of attitude, knowledge, and empathy to dementia. Open text responses were also included to explore the students' reasons for their preferences. Results The preference for working with older people and people with dementia was low and decreased during training. A linear regression analysis supports a strong relationship of preferences with attitudes to dementia. Content analysis of students' reasons for their preferences found that perceived difficulty and lack of confidence contributes to the negative evaluation of working with people with dementia. Conclusion Undergraduate nursing education needs to continue to review its contribution to preparing the dementia workforce and act to support positive attitudes to working with people with dementia across nursing specialties.