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Dementia usually occurs as a result of brain disease and, while it is usually chronic or progressive in nature, it has not traditionally been conceptualised as a terminal or life-limiting syndrome. However, the median survival time for people with dementia is between 3.5 years and 4.5 years from symptom onset to death, although this varies depending at which stage the dementia is diagnosed and its cause. As such, it has long been recognised that people with dementia and their family carers have palliative care needs equal to those of patients with cancer. However, a palliative approach to dementia care requires both the dementia and palliative care workforces to fully understand the needs of people with dementia and their families towards the end of life. This article describes the development of a 'community of practice' where healthcare professionals from dementia and palliative care services shared their practice and learned from each other in a safe and supportive environment., Competing Interests: None declared, (© 2024 RCN Publishing Company Ltd. All rights reserved. Not to be copied, transmitted or recorded in any way, in whole or part, without prior permission of the publishers.)

Introduction: People with dementia are more likely than people without dementia to be hospitalized and to experience in-hospital preventable adverse events, such as falls, skin injury, and infection, compared to other hospitalized groups. Negative attitudes towards people with dementia are common among acute healthcare workers and have been linked to a cascade of negative adverse events in this population. However, no qualitative systematic review has ever been conducted to synthesize the existing evidence in this area, which hampers the development of preventative measures., Aim: This is a protocol for a qualitative systematic review aimed at exploring and synthesizing existing qualitative evidence regarding the attitudes of nursing staff towards the prevention of adverse events among hospitalized people with dementia., Methods: Literature searches will be performed in PubMed, CINAHL, PsycINFO, Web of Science, Biblioteca Virtual de Salud, Scopus, The Cochrane Library, and Google Scholar. The references of eligible studies will be checked for eligibility. All primary qualitative or mixed-methods studies with a qualitative component published in peer-reviewed academic journals in English, Portuguese, or Spanish will be eligible. There will be no limitations to the date of publication. The selection process will be conducted independently by two researchers using the software Rayyan and then compared and discussed. Any disagreements regarding eligibility will be discussed among the entire research team and resolved via consensus. Methodological quality will be assessed using Cochrane's guidance. A meta-aggregative approach will be employed to extract and synthesize the evidence using the software package QARI from the JBI. The confidence in the findings will be graded using ConQual., Implications: This review will help identify and better understand specific attitudinal and psychosocial aspects that influence nursing care delivery for people with dementia in hospital settings. Such data can be used to generate novel explanatory models of nursing behaviors in dementia care, as well as capacity building and training to enhance hospital care for people with dementia globally., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Catalán et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Background: In the UK, a large proportion of older adults live in rural/remote locations. More people are dying at home and require care from their families. Little is known about the experiences of family carers of older people in rural/remote areas in the last year of life., Aim: To explore the experiences of current and bereaved family carers who support/ed an older person in a rural area in the UK towards the end-of-life., Design: Qualitative methodology using semi-structured interviews and reflexive thematic analysis methods., Method: Interviews were conducted with family carers of rural/remote-dwelling older people in the last year of life. Participants were recruited through national support services, third sector organisations and social media., Results: Interviews were conducted with 20 family carers. Most were female (n = 17) and aged 52-80 years. Family carers experienced difficulties in accessing health and social care in rural/remote areas due to workforce and skills shortages within their regions. The wider community helped with practical tasks and made carers feel less alone. Community-based services, such as day care, helped to provide respite for carers and promoted meaningful activity and social inclusion for older people. Although internet access was problematic, family carers gained support remotely via social media and telehealth services., Conclusion: Family carers of older people in the last year of life in rural/remote areas value support from the wider community. Further work is required to understand how Public Health approaches to palliative care and workforce distribution can support rural/remote carers and older people., (© The Author(s) 2024. Published by Oxford University Press on behalf of the British Geriatrics Society.)

Background: Research involvement and engagement is a vital aspect of nursing practice. However, research in dementia care remains limited compared to research focused on finding a cure, presenting a significant gap that specialist dementia nurses (Admiral Nurses) can help bridge by participating in research themselves and facilitating recruitment to research., Objectives: This study aimed to assess the research involvement and support needs of Admiral Nurses and identify factors affecting their participation in research. This research is particularly timely as Dementia UK has launched its first research strategy, which necessitates strengthening research capacity within Admiral Nursing., Methods: We used a mixed methods convergent parallel synthesis design, simultaneously collecting quantitative and qualitative data. An online survey was conducted in January 2023, targeting current Admiral Nurses across the United Kingdom. The survey included questions addressing demographics, research experience, goals, barriers, facilitators, and support needs. Data analysis involved descriptive statistics, frequencies, univariate analyses, and thematic analysis., Results: A positive relationship was found between the highest level of academic achievement and current or previous research involvement, as well as interest in becoming involved in research in the future. Although most nurses recognized the importance of research, only half reported current or past research involvement, indicating a need for increased support. A lack of access and opportunities for peer discussion hindered engagement with research findings. Time constraints, lack of support, and low confidence were major barriers to research involvement. Support needs varied but included mentorship, coaching, and the potential for a community of practice for research., Discussion: This survey of Admiral Nurses sheds light on their research involvement, support needs, and barriers to participation. Recognizing the significance of research while identifying challenges and support requirements is crucial for enhancing research capacity among these specialized nurses. This study contributes valuable insights into the world of specialist dementia nursing and lays the foundation for future strategies to increase research engagement in this field., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2024 Wolters Kluwer Health, Inc. All rights reserved.)

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., (©Fiona Scheibl, Lizzy Boots, Ruth Eley, Christopher Fox, Fergus Gracey, Karen Harrison Dening, Jan Oyebode, Bridget Penhale, Fiona Poland, Gemma Ridel, Juniper West, Jane L Cross. Originally published in JMIR Formative Research (https://formative.jmir.org), 22.05.2024.)

Advance care planning (ACP) is increasingly recognised in the global agenda for dementia care. The European Association for Palliative Care (EAPC) Taskforce on ACP in Dementia aimed to provide recommendations for policy initiatives and future research. We conducted a four-round Delphi study with a 33-country panel of 107 experts between September, 2021, and June, 2022, that was approved by the EAPC Board. Consensus was achieved on 11 recommendations concerning the regulation of advance directives, equity of access, and dementia-inclusive approaches and conversations to express patients' values. Identified research gaps included the need for an evidence-based dementia-specific practice model that optimises engagement and communication with people with fluctuating and impaired capacity and their families to support decision making, while also empowering people to adjust their decisions if their goals or preferences change over time. Policy gaps included insufficient health services frameworks for dementia-inclusive practice. The results highlight the need for more evidence and policy development that support inclusive ACP practice models., Competing Interests: Declaration of interests MN received research grants from the Japan Society for the Promotion of Science and the Japan Agency for Medical Research and Development outside of this work. LVdB reports research grants from EU NAVIGATE, PACE, INDUCT, and DISTINCT under European Commission grant agreements and from Fonds Wetenschappelijk Onderzoek Flanders, Flanders Innovation and Entrepreneurship Francqui Foundation, Research Council University at Vrije Universiteit Brussel, Kom Op Tegen Kanker (Flemish Stand Up to Cancer), Foundation for Alzheimer Research, and the King Baudouin Foundation. LVdB has received book royalties from Oxford University Press; payment for lectures from the Flemish Federation of Palliative Care, Katholieke Universiteit Leuven for developing the content of an e-learning module for physicians; and payment from the Vrije Universiteit Brussel for a lecture within the postgraduate course on palliative care for masters and medicine. PJL received contract payment from National Technical University Norway. IH received research grants from the Health Care Research Agency Czech Republic and the Department of Health Social Care in Prague. JTvdS received salary support from a European Research Council personal Consolidator career award and Leiden University Medical Center Department of Public Health and Primary Care. All other authors declare no competing interests., (Copyright © 2024 The Author(s). Published by Elsevier Ltd. This is an Open Access article under the CC BY 4.0 license. Published by Elsevier Ltd.. All rights reserved.)

Background: Advance care planning in dementia includes supporting the person and their family to consider important goals of care. International research reports the importance of psycho-social-spiritual aspects towards end of life., Aim: To develop a multidimensional international palliative care goals model in dementia for use in practice., Design: International Delphi study integrating consensus and evidence from a meta-qualitative study. The Delphi panel rated statements about the model on a 5-point agreement scale. The criteria for consensus were pre-specified., Setting/participants: Seventeen researchers from eight countries developed an initial model, and 169 candidate panellists were invited to the international online Delphi study., Results: Panellists (107; response 63.3%) resided in 33 countries. The model comprised four main care goals: (1) Comfort ensured; (2) Control over function maintained; (3) Identity protected and personhood respected and (4) Coping with grief and loss-person and caregiver supported. The model reflects how needs and care goals change over time with the progression of dementia, concluding with bereavement support. The first version of the model achieved a consensus after which it was slightly refined based on feedback. We did not achieve a consensus on adding a goal of life prolongation, and on use of the model by people with dementia and family themselves., Conclusion: A new palliative care goals model for people with dementia and their families includes relationship aspects for use by professionals and achieved a consensus among a panel with diverse cultural background. The position of life prolongation in relation to palliative care goals needs further research., Competing Interests: Declaration of conflicting interestsThe author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: This study was performed with the same expert panel as with EAPC’s ACP Delphi study, but this study was not designed by the EAPC ACP in dementia task force. This separate study was not conducted as part of the remit of the EAPC task force. There are no conflicts of interest.

Competing Interests: Competing interests: None declared.

What constitutes a risk for a person living with dementia may be perceived and prioritised differently by nurses from varying clinical backgrounds. Furthermore, risk may be perceived differently according to the context. This article outlines some of the social, psychological and physical risk factors relevant to people living with dementia across the life course of the condition. It is important that nurses understand their role in identifying, assessing and managing risk and are aware of the resources, policies, legislation and processes designed to support decision-making and minimise the risk of harm to people living with dementia, their families and carers. The authors hope that this article will support nurses to become more confident in identifying risk while encouraging them to adopt a proactive and person-centred approach to risk assessment and management., Competing Interests: Zena Aldridge is consultant editor of Nursing Older People, (© 2024 RCN Publishing Company Ltd. All rights reserved. Not to be copied, transmitted or recorded in any way, in whole or part, without prior permission of the publishers.)

Introduction: Existing advance care planning (ACP) definitional frameworks apply to individuals with decision-making capacity. We aimed to conceptualize ACP for dementia in terms of its definition and issues that deserve particular attention., Methods: Delphi study with phases: (A) adaptation of a generic ACP framework by a task force of the European Association for Palliative Care (EAPC); (B) four online surveys by 107 experts from 33 countries, September 2021 to June 2022; (C) approval by the EAPC board., Results: ACP in dementia was defined as a communication process adapted to the person's capacity, which includes, and is continued with, family if available. We identified pragmatic boundaries regarding participation and time (i.e., current or end-of-life care). Three interrelated issues that deserve particular attention were capacity, family, and engagement and communication., Discussion: A communication and relationship-centered definitional framework of ACP in dementia evolved through international consensus supporting inclusiveness of persons with dementia and their family., Highlights: This article offers a consensus definitional framework of advance care planning in dementia. The definition covers all stages of capacity and includes family caregivers. Particularly important are (1) capacity, (2) family, (3) engagement, and communication. Fluctuating capacity was visualized in relation to roles and engaging stakeholders., (© 2023 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.)

There is little evidence to suggest that people with dementia experience less pain than those without dementia, however they are less likely to report their pain due to the cognitive impairments they experience as their dementia progresses. A comprehensive pain assessment that involves family members, carers and/or friends in the process is crucial to gain an understanding of a person's medical and pain history, and to ensure effective pain management in people with dementia. This article describes the identification, assessment and management of pain in older people with dementia. The author includes a fictional case study with the aim of supporting nurses to reflect on possible indicators of pain in a person with dementia and to consider the tools they may use when identifying and assessing this pain., Competing Interests: None declared, (© 2023 RCN Publishing Company Ltd. All rights reserved. Not to be copied, transmitted or recorded in any way, in whole or part, without prior permission of the publishers.)

Purpose of Review: Dementia policy priorities recommend that people who are living with dementia and their family should have access to support and interventions delivered by dementia specialists, including specialist nurses. However, specialist dementia nursing models and role-related competencies are not clearly defined. We systematically review the current evidence regarding specialist dementia nursing models and their impacts., Recent Findings: Thirty-one studies from across three databases, and grey literature were included in the review. One framework defining specific specialist dementia nursing competencies was found. We did not find convincing evidence of the effectiveness of specialist nursing dementia services, relative to standard models of care from the current, limited evidence base, although families living with dementia valued it. No Randomised Controlled Trial (RCT) has compared the impact of specialist nursing on client and carer outcomes relative to less specialist care, although one nonrandomised study reported that specialist dementia nursing reduces emergency and inpatient service use compared with a usual care group., Summary: Current models of specialist dementia nursing are numerous and heterogeneous. Further exploration of the specialist nursing skills and the impact of specialist nursing interventions is needed to usefully inform workforce development strategies and clinical practice., (Copyright © 2023 Wolters Kluwer Health, Inc. All rights reserved.)

Introduction: Care is often inadequate and poorly integrated after a dementia diagnosis. Research and policy highlight the unaffordability and unsustainability of specialist-led support, and instead suggest a task-shared model, led by primary care. This study is part of the PriDem primary care led postdiagnostic dementia care research programme and will assess delivery of an evidence-informed, primary care based, person-centred intervention. The intervention involves Clinical Dementia Leads (CDLs) working in primary care to develop effective dementia care systems that build workforce capacity and support teams to deliver tailored support to people living with dementia and their carers., Methods and Analysis: This is a 15-month mixed-methods feasibility and implementation study, situated in four National Health Service (NHS) primary care networks in England. The primary outcome is adoption of personalised care planning by participating general practices, assessed through a patient records audit. Feasibility outcomes include recruitment and retention; appropriateness and acceptability of outcome measures; acceptability, feasibility and fidelity of intervention components. People living with dementia (n=80) and carers (n=66) will be recruited through participating general practices and will complete standardised measures of health and well-being. Participant service use data will be extracted from electronic medical records. A process evaluation will explore implementation barriers and facilitators through methods including semistructured interviews with people living with dementia, carers and professionals; observation of CDL engagement with practice staff; and a practice fidelity log. Process evaluation data will be analysed qualitatively using codebook thematic analysis, and quantitatively using descriptive statistics. Economic analysis will determine intervention cost-effectiveness., Ethics and Dissemination: The study has received favourable ethical opinion from Wales REC4. NHS Confidentiality Advisory Group support allows researchers preconsent access to patient data. Results will inform intervention adaptations and a future large-scale evaluation. Dissemination through peer-review journals, engagement with policy-makers and conferences will inform recommendations for dementia services commissioning., Trial Registration Number: ISRCTN11677384., Competing Interests: Competing interests: LA acknowledges support of the National Institute for Health Research Applied Research Collaboration Southwest Peninsula., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Dementia is an umbrella term used to describe a group of symptoms characterised by behavioural changes, as well as loss of cognitive and social functioning brought about by progressive neurological disorders. There are approximately 944 000 people living with dementia in the UK and estimates indicate this will increase to over 2 million by 2051. Dementia, if left undiagnosed, can have an insidious and harmful impact on the people and their families who are affected by it. A timely diagnosis can be made when a person with a possible dementia comes to the attention of clinicians due to concerns about changes in their cognition, behaviour, or functioning. Community nurses are well-placed to observe changes in their older patients, which may be indicative of early dementia. This paper uses a case study to illustrate possible early signs of dementia and discusses the recognition and initial cognitive tests that can be used in a primary care setting.

Introduction: An admission to a mental health ward is an uncertain and unexpected part of a person's journey with dementia and consequently, families require information about what to expect and how to prepare. This study aimed to establish the information needs of people with dementia and their families at the point of admission to a mental health ward and to collate existing ward information leaflets to explore if they meet these information needs., Methods: This research was conducted in two parts: (1) a qualitative study using focus groups, one with people with dementia and family carers with lived experience of such an admission (n = 6), and another with Admiral Nurses (n = 6) to explore information needs at the point of admission. (2) Each National Health Service (NHS) mental health trust (n = 67) was asked to provide a copy of their ward information shared at admission. A total of 30 leaflets were received from 15 NHS trusts; after removing duplicates, 22 were included. A content analysis was conducted to evaluate to what extent leaflets met the information needs identified by focus groups., Results: Two main categories 'honest, accurate and up-to-date information' and 'who is the information for' and four subcategories were derived from focus group data. Participants felt that people with dementia and their families were likely to have different information needs. Material for people with dementia needed to be in an accessible format. Information should cover the aim of the admission, a timeline of what to expect and details about how families will be involved in care. Practical information about what to pack and ward facilities was valued. Participants spoke about the need to consider the tone of the information, given that people are likely to be distressed. The information leaflets reviewed did not meet the information needs identified by focus group participants., Conclusions: People with dementia and family carers have different information needs at the point of admission to a mental health ward. Information provided to people with dementia needs to be in an accessible format with content relevant to these needs. Wards should aim to co-create information to ensure that they meet people's information needs., Patient or Public Contribution: This research was supported by a patient and public involvement (PPI) group of people with dementia and carers who have experience in mental health wards. The idea for the study came from the group and was motivated by their experiences. The PPI group helped with the design of the study and took part in the focus groups. The information generated has been written up in this paper, and the knowledge generated has also been used to co-create a guide for wards on writing their information leaflets and to support the co-creation of a public information leaflet by Dementia UK about mental health admissions for people with dementia., (© 2023 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Background: The need to improve support following a diagnosis of dementia is widely recognised, but it is unclear how this can best be achieved within UK health and social care systems. A task-shared and task-shifted approach has been recommended, but there is limited guidance on how to achieve this in practice. As part of a programme of research, we developed an intervention to enhance the role of primary care in post-diagnostic care and support for people living with dementia and carers., Methods: We used the Theory of Change to develop a complex intervention informed by initial literature reviews and qualitative work. The intervention was developed through an iterative series of workshops, meetings and task groups with a range of stakeholders, including the multidisciplinary project team, people living with dementia and carers, service managers, frontline practitioners, and commissioners., Results: 142 participants contributed to intervention development through face-to-face or virtual meetings. The intervention comprises three complementary strands of work focusing on: developing systems, delivering tailored care and support, and building capacity and capability. Clinical dementia leads, based in primary care networks, will facilitate the intervention providing tailored expertise and support., Conclusion: The Theory of Change proved useful in providing structure and engaging stakeholders. The process was challenging, took longer and was less participative than intended due to restrictions caused by the COVID-19 pandemic. We will next conduct a feasibility and implementation study to explore whether the intervention can be successfully delivered within primary care. If successful, the intervention offers practical strategies for delivering a task-shared and task-shifted approach to post-diagnostic support that could be adapted for similar health and social care contexts internationally., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2023 Bamford et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Background: Visiting restrictions in care homes in England and many comparable countries during the Covid-19 pandemic were extensive and prolonged. We examined how care home managers experienced, understood and responded to the national care home visiting guidance in England in developing their visiting policies., Methods: A diverse sample of 121 care home managers across England, recruited through varied sources including the NIHR ENRICH network of care homes, completed a 10-item qualitative survey. Follow-up, in-depth qualitative interviews were conducted with a purposive sub-sample of 40 managers. Data were analysed thematically using Framework, a theoretically and methodologically flexible tool for data analysis in multiple researcher teams., Findings: Some viewed the national guidance positively; as supporting the restrictive measures they felt necessary to protect residents and staff from infection, or as setting a broad policy framework while allowing local discretion. More commonly, however, managers experienced challenges. These included the guidance being issued late; the initial document and frequent, media-led updates not being user-friendly; important gaps, particularly in relation to dementia and the risks and harms associated with restrictions; guidance being unhelpfully open to interpretation while restrictive interpretations by regulators limited apparent scope for discretion; fragmented systems of local governance and poor central-local coordination; inconsistent access and quality of support from local regulators wider sources of information, advice and support that, while often valued, were experienced as uncoordinated, duplicative and sometimes confusing; and insufficient account taken of workforce challenges., Conclusions: Underlying many of the challenges experienced were structural issues, for which there have been longstanding calls for investment and strategic reform. For increasing sector resilience, these should be are urgently addressed. Future guidance would also be significantly strengthened by gathering better data, supporting well-facilitated peer exchange, engaging the sector more fully and dynamically in policy-making and learning from care home managers' and staff's experiences, particularly of assessing, managing and mitigating the wider risks and harms associated with visiting restrictions., (© 2023. The Author(s).)

Behavioural and psychological symptoms of dementia (BPSD) affect more than one third of people with dementia at some point during the course of their condition. Agitation is the third most common BPSD but is the least well understood in terms of identification and management. Furthermore, agitation as a symptom of dementia is often confused with agitation as a way of expressing an emotion or unmet need. Psychosocial interventions are recommended to support the person with dementia and their family carers to manage agitation as a symptom of dementia, as well as other BPSD, in a person-centred manner. Some psychosocial interventions for managing agitation as a symptom of dementia have shown benefits, but further investigation of the usefulness of a range of interventions is needed. This article discusses the assessment and management of agitation as a symptom of dementia and illustrates their application through a case study., Competing Interests: None declared, (© 2023 RCN Publishing Company Ltd. All rights reserved. Not to be copied, transmitted or recorded in any way, in whole or part, without prior permission of the publishers.)

Introduction: This study investigates family carers experiences of inpatient mental health care for people with dementia. A mental health inpatient admission for a person with dementia is usually considered when a person is distressed and this distress leads to behaviours that are assessed to be risky for the person or others., Methods: Participants included seven family carers whose relative with dementia had been cared for within a mental health ward in the United Kingdom UK within the last 5 years. Interviews were used to explore the circumstances that led to the admission, expectations of mental health care, and perceptions of care during the admission and support received by family carers., Results: Participants described their distress at the time of admission and how the process of admission sometimes added to their distress. Carers often felt excluded from their relatives care in hospital and many felt a loss of their rights. Participants felt that the mental health admission had a negative impact on their relative with dementia. Mental health law and legislation was difficult to navigate and carers were concerned about how much knowledge and understanding of dementia staff have., Discussion: Findings suggest that family carers may benefit from targeted support during their relatives admission. Mental health wards could do more to recognise the expertise in care and knowledge of the person with dementia of family carers and involve them in planning care. More research is needed to explore the experiences and outcomes of people with dementia during such admissions., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. The reviewer KDV declared a past collaboration with one of the authors KHD to the handling editor. The reviewer AP declared a past collaboration with the authors KHD and EW to the handling editor., (Copyright © 2023 Wolverson, Harrison Dening, Dunning, Crowther, Russell and Underwood.)

Competing Interests: Competing interests: None declared.

Many people living with dementia choose to remain in their own homes, supported by home-care workers, who provide care that is specified in care plans. We explored how care plans of clients living with dementia, compared with ethnographic observations of home care they received. In a secondary, reflexive thematic analysis, we reviewed care plans for 17 clients living with dementia and transcripts from 100 h of observations with 16 home-care workers delivering care to them. Our overarching theme was: Care plans as a starting point but incomplete repository. Clients' care plans provided useful background information but did not reflect a wealth of knowledge home-care workers built through practice. Two sub-themes described: (a) Person-centred care planning: whether and how the care plan supported tailoring of care to clients' needs and (b) Filling in the gaps: home-care workers often worked beyond the scope of vague, incomplete or out-of-date care plans. We found considerable inconsistencies between care plans and the care that was delivered. Care plans that were comprehensive about care needs, and rich in person-specific information aided the delivery of person-centred care. Lack of documentation was sometimes associated with observed failures in person-centred care, as helpful information and strategies were not shared. Including information in care plans about how, as well as what care tasks, should be completed, and frequently discussing and updating care plans can create more person-centred plans that reflect changing needs. Electronic care planning systems may support this., (© 2022 The Authors. Health and Social Care in the Community published by John Wiley & Sons Ltd.)

Competing Interests: Competing interests: None declared.

Background: More people are dying at home with dementia and Alzheimer's disease. While informal caregivers are the main providers of care for people with dementia dying at home, they require support from health and social care services. However, little is known about how they experience these services., Aim: To explore informal caregivers' views and experiences of health and social care services when looking after a person with dementia at home at the end-of-life., Design: A qualitative interview study. Data were analysed using thematic analysis., Setting/participants: Twenty-nine bereaved informal caregivers who had looked after a person with dementia at home during the last 6 months of life., Results: Specialist palliative care for people with dementia dying at home is rare and care is mostly managed by General Practitioners and domiciliary care workers. Four overarching themes were identified: Poor continuity of care; Lack of expertise; Limited advance care planning; and Loss of autonomy., Conclusions: End-of-life care at home for people with dementia must be proactively planned with an emphasis on advance care planning. Policy makers should recognise the critical role of domiciliary care services in end-of-life care and ensure that they are adequately qualified and trained.

Background: Advance care planning in nursing homes is important to ensure the wishes and preferences of residents are recorded, especially during the COVID-19 pandemic. However, care staff and family members frequently report feeling unprepared for these conversations. More resources are needed to support them with these necessary discussions. This research aimed to develop, implement and evaluate a website intervention for care staff and family members to provide training and information about advance care planning during COVID-19., Methods: The research was a primarily qualitative case study design, comprising multiple UK nursing home cases. Data collection included semi-structured interviews with care staff and family members which were coded and analysed thematically. A narrative synthesis was produced for each case, culminating in a thematic cross-case analysis of the total findings. Theoretical propositions were refined throughout the research., Results: Eight nursing homes took part in the study, involving 35 care staff and 19 family members. Findings were reported according to the RE-AIM framework which identified the reach, effectiveness, adoption, implementation and maintenance of the intervention. Themes included: website content that was well received; suggestions for improvement; implementation barriers and facilitators; examples of organisational and personal impact., Conclusions: Four theoretical propositions relating to advance care planning in nursing homes are presented, relating to: training and information needs, accessibility, context, and encouraging conversations. Implications for practice and training include an awareness of diverse learning styles, re-enforcing the right to be involved in advance care planning and encouraging opportunities for facilitated discussion., Trial Registration: ISRCTN registry (ID 18003630 ) on 19.05.21., (© 2022. The Author(s).)

Competing Interests: Competing interests: None declared.

Introduction: When the first national COVID-19 lockdown came into effect in the UK in March 2020, life changed significantly. Some services and social contacts for people with dementia and their families stopped, while others, for example, peer support, moved online. This research explored the experiences of families affected by dementia during the pandemic, specifically those living in the community., Aims: In partnership with a community dementia charity, this study sought to gain an understanding of the experiences of people with dementia and family carers during the COVID-19 pandemic and explore the impact and implications of lockdown on people with dementia and family carers., Methods: This was a qualitative study that used semi-structured interviews to collect data from people with dementia and family carers. Interviews were conducted online via video call, individually or within caring dyads. Initially, data were coded, analysed and themed inductively. Additionally, social disruption and social division theories were used to deductively identify patterns in the data to enhance understanding., Findings: Six distinct themes were identified from the inductive analysis: Routine: 'busy life before lockdown '; Isolation: ' four walls and a garden '; Living with restrictions: ' treading on eggshells' ; Discovering positives: 'you are in the same boat '; Easing lockdown: ' raring to go '; Heightened uncertainty: ' things have changed '. Illustrative examples of symptoms of social disruption and division were identified within the data: frustration, democratic disconnection, fragmentation, polarisation and escalation., Conclusion: Experiences of people with dementia and family carers during the pandemic were mixed, resulting in hopes and worries for the future. Social disruption and social division are relevant frameworks for analysing experiences of COVID-19.

Background: There has been a shift in focus of international dementia policies from improving diagnostic rates to enhancing the post-diagnostic support provided to people with dementia and their carers. There is, however, little agreement over what constitutes good post-diagnostic support. This study aimed to identify the components of post-diagnostic dementia support., Methods: We adopted a qualitative design using interviews, focus groups and observation to explore the perspectives of key stakeholders on the content of post-diagnostic dementia support. Purposive sampling was used to identify sites in England and Wales recognised as delivering good practice. Participants included 17 people with dementia, 31 carers, 68 service managers or funders, and 78 frontline staff. Interviews and focus groups were audio recorded and transcribed for analysis. Forty-eight sessions of observation were completed and recorded in fieldnotes. Components were identified through an inductive, thematic approach and cross-checked against national guidelines and existing frameworks; they were subsequently critically reviewed by a range of experts and our mixed stakeholder panel., Results: Twenty distinct components of post-diagnostic support were identified, related to five themes: timely identification and management of needs; understanding and managing dementia; emotional and psychological wellbeing; practical support; and integrating support. The first and last of these were cross-cutting themes facilitating the delivery of a unique constellation of components of post-diagnostic support to each individual living with dementia or dyad at a particular time., Conclusions: Our work offers an empirically based framework to inform the development and delivery of holistic, integrated and continuous dementia care from diagnosis to end of life. It highlights the relevance of many components to both people living with dementia and their carers. Since the framework was developed in England and Wales, further research is needed to explore the relevance of our components to other sectors, countries and care systems., Competing Interests: The authors have declared that no competing interests exist.

Objectives: Concentrating post-diagnostic dementia care in primary care may lead to better and more cost-effective care closer to home. We aimed to assess which intervention components and contextual factors may contribute to the successful delivery and implementation of primary care-led post-diagnostic dementia care., Methods: Mixed-methods systematic review. We searched five databases (inception-March 2019) with reference list screening and citation tracking. We included studies evaluating post-diagnostic dementia care interventions where primary care had a significant role in dementia care, which assessed one or more implementation elements (acceptability, feasibility, adoption, sustainability, reach, costs, appropriateness or fidelity). Two authors independently critically appraised studies., Results: Out of 4528 unique references, we screened 380 full texts and included 49 evaluations of services collecting implementation process data. Most services had high acceptability ratings. The most acceptable components were information provision, social and emotional support and links to community organisations. Feasibility was chiefly influenced by provider engagement and leadership, building dementia care capacity, sufficient resources/funding and collaboration. Care quality was maximised through adding capacity from a dementia-specific health professional. On the basis of limited data, costs for various primary care-led models did not substantially differ from each other., Conclusion: A range of primary care-led dementia care models appear feasible and acceptable. Future services should: add dementia-focussed health professionals into primary care, develop primary care leadership and provide sufficient funding and collaboration opportunities. Information, community service links and social and ongoing support should be part of services. Further exploration of service reach and formalised fidelity assessment are needed.

Purpose of Review: Cognitive impairment is increasing in an ageing population and as people live longer, they are more likely to develop cancer therefore cognitive impairment and cancer are frequently co-occurring. We reviewed articles published since 2018 on cognitive impairment and cancer., Recent Findings: The current review has focused on diagnosis, treatment and palliative and end of life care. A comprehensive systematic review reported joint cancer and cognitive impairment prevalence from 0.2 to 45.6%. The review reported there was reduced likelihood of patients with co-occurring cognitive and cancer receiving information regarding cancer stage, reduced cancer treatment with curative intent and limited pain and symptom management. Further studies emphasized the role of family carers in supporting patients with cognitive impairment through cancer treatment., Summary: Disappointingly in an area where the numbers of patients with cognitive impairment and cancer are increasing, there appears to be little recently published research in this area. We conclude that further research is required to determine how best to support patients with cognitive impairment and cancer and families during diagnosis of cancer, treatment and continuing care and most importantly the findings of all studies are implemented within clinical practice., (Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.)

Creutzfeldt-Jakob disease (CJD) is a rare and fatal neurodegenerative disease for which there is no cure. However, it is difficult to diagnose and is unique in that it is both a genetic and transmissible disease. The disease is characterised by symptoms of a rapidly progressive dementia. Palliation is the only treatment and early diagnosis is an important aspect in relation to gaining speedy access to palliative and end-of-life care services. People with CJD may be cared for in a diversity of settings including; general hospital wards, neurological units, hospices; care homes and in their own home. Management of physical and psychosocial symptoms and dealing with family bereavement is complex and challenging. Due to the complexity of the physical symptoms input from clinicians with palliative care expertise is an important consideration. Given transmission risk and the latent incidence of infection in the general population, following the emergence of variant CJD; plus the recent hypothesis of a potential relationship between immune responses to COVID-19 and the acceleration of preclinical or evident neurodegenerative disease, there is a need for renewed interest in research in this field. Over the past 20 years, many thousands of articles have been published on CJD. These have been predominately in the medical and science literature and very few publications have addressed the nursing care of persons and families dealing with CJD. There is a need for renewed interest in the management of the disease by supportive and palliative care services., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.)

Competing Interests: Competing interests: None declared.

Objectives: Historically, dementia has not been recognised as a life-limiting condition or one that may benefit from a palliative approach to its care. There are many challenges in providing palliative and end-of-life care to this group of people, some of which may be reduced through advance care planning (ACP) to support people with dementia to have a greater influence on their care at end of life. ACP has been defined as a process of discussing and recording of wishes, values and preferences for future care and treatment held between an individual, family members and their care provider(s) that takes effect when the person loses capacity. The objective of this project was to involve people with dementia and their family carers in co-design of ACP guide and template to prepare for further study related to communication processes in ACP., Methods: A user-centred design process cycle of development and review was undertaken by Dementia UK which involved people with dementia, family carers, Admiral Nurses and other key stakeholders in developing an ACP guide and template., Results: Nine cyclical stages were undertaken to achieve the outcome of an ACP guide and template., Conclusion: Co-production using a user-centred design approach offers a structured and inclusive approach to developing ACP materials.Authors., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. No commercial re-use. See rights and permissions. Published by BMJ.)

The number of older people living with complex health conditions is increasing, with the majority of these managed in primary and community settings. Many models of care have been developed to support them, however, there is mixed evidence on their value and they include multiple overlapping components. We aimed to synthesise the evidence to learn what works for managing complex conditions in older people in primary and community care. We carried out a state-of-the-art review of systematic reviews. We searched three databases (January 2009 to July 2019) for models of primary and community care for long-term conditions, frailty, multimorbidity and complex neurological conditions common to older people such as dementia. We narratively synthesised review findings to summarise the evidence for each model type and identify components which influenced effectiveness. Out of 2,129 unique titles and abstracts, 178 full texts were reviewed and 54 systematic reviews were included. We found that the models of care were more likely to improve depressive symptoms and mental health outcomes than physical health or service use outcomes. Interventions including self-management, patient education, assessment with follow-up care procedures, and structured care processes or pathways had greater evidence of effectiveness. The level of healthcare service integration appeared to be more important than inclusion of specific professional types within a team. However, more experienced and qualified nurses were associated with better outcomes. These conclusions are limited by the overlap between reviews, reliance on vote counting within some included reviews and the quality of study reports. In conclusion, primary and community care interventions for complex conditions in older people should include: (a) clear intervention targets; (b) explicit theoretical underpinnings; and (c) elements of self-management and patient education, structured collaboration between healthcare professionals and professional support. Further work needs to determine the optimal intensity, length, team composition and role of technology in interventions., (© 2020 The Authors. Health and Social Care in the Community published by John Wiley & Sons Ltd.)

Services for people with dementia and their families in England are commissioned with a lack of integration and an inconsistent approach creating gaps in service provision. Therefore, families affected by dementia are not receiving the appropriate care in a timely manner and often access support at crisis point. This reactive and crisis driven approach to care is costly financially and can have a negative impact and quality of life of those affected. The ABC model offers an adaptable framework that can inform service provision and improve opportunities to create seamless peri- and post-diagnosis dementia services for families affected by dementia.

Addressing palliative care needs of people with dementia appropriately, identifying the end-of-life stage, meeting the needs of family carers as well as supporting the preferences and wishes of the person with the diagnosis can all present challenges to generalist health and social care providers. In partnership with Dementia UK and Kirkwood Hospice in West Yorkshire embarked upon a two-year pilot to introduce the first end-of-life care Admiral Nurse to their Specialist Community Palliative Care Team to identify and support people with dementia who required palliative and end-of-life care. This paper describes and discusses this innovative partnership and outcomes from year one evaluation and sets out future plans.

Competing Interests: Competing interests: None declared.

Objectives: To explore the views of commissioners, service development leads, service managers and senior staff in selected dementia services on increasing the role of primary care in postdiagnostic support for people with dementia., Design: Qualitative semi-structured telephone interviews and a focus group., Setting: Participants were drawn from National Health Service (NHS) Clinical Commissioning Groups, social care commissioning and a range of dementia services across primary care, secondary mental healthcare, social care and the third sector. All participants were based in England or Wales., Participants: 61 professionals, comprising 25 commissioners or service development leads; 25 service managers; and 11 team leads or senior staff., Results: Participants had varied views on whether a primary care-based approach for postdiagnostic support for people with dementia and their families was appropriate, achievable and/or desirable. Potential benefits of a task-shifted approach were continuity and a more holistic approach to care; familiarity for both patients and staff; and reduction of stigma. Key challenges included the capacity, ability and inclination of primary care to deliver postdiagnostic support for people with dementia and their families. We discovered a number of conceptual challenges to implementing a task-shifted and task-shared approach, including uncertainties around the nature of postdiagnostic support, the definition of primary care and identification of tasks that could be shifted to primary care., Conclusions: Our data highlight the concerns of key professional staff around greater involvement of primary care in postdiagnostic support for dementia. Further research is needed to achieve a shared understanding and consensus over what postdiagnostic support means in the context of dementia. We will be undertaking such research in the next phase of our programme., Competing Interests: Competing interests: Professor Robinson reports grants from National Institute for Health Research Senior Investigator award, outside the submitted work., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Objectives: To explore current practice and the role of UK care homes and Admiral Nurses in helping people living with dementia and their family carers prepare for end-of-life., Methods: We conducted an online survey with all UK Admiral Nurses (59% response rate) and a random sample of Gold Standards Framework accredited care homes in England and Wales (38% response rate). We used descriptive statistics to report survey findings., Results: While respondents commonly discussed the progressive nature of dementia with people living with dementia and family carers, they less frequently spoke to people with dementia or carers about the nature of dementia as life shortening, terminal, or a disease you can die from. Admiral Nurses highlighted that where service models reduced continuity of care, opportunities for ongoing discussion and developing relationships that supported these discussions were reduced. Admiral Nurses and care homes raised concerns about conversations being left too late, when the person with dementia no longer had capacity to engage. There was a high level of agreement with all European Association of Palliative Care and National Institute for Health and Care Excellence (NICE) statements presented regarding end-of-life care planning and discussions., Conclusions: Our survey of care homes and Admiral Nurses, combined with findings from our previous survey of UK memory services, increases our understanding of how services help people with dementia and family carers prepare for end-of-life. We found fragmentation across the service system, lack of continuity, and tensions regarding when these conversations should be initiated and by whom., (© 2020 John Wiley & Sons Ltd.)

Competing Interests: Competing interests: None declared.

Dementia UK and The Charity for Civil Servants teamed up to test the acceptability and feasibility of delivering a work-based Admiral Nurse clinic to support family carers during their employed working hours. This paper presents some of the learning from this innovative approach.

Education of health and social care professionals is essential in preparation to confidently and effectively support families affected by dementia to undertake advance care planning. This article describes a training needs analysis of Admiral Nurses, dementia specialists, in facilitating advance care planning for future care., Methods: A questionnaire survey was completed by Admiral Nurses attending end-of-life care masterclasses in 2017 and 2018. Both quantitative (years registered as a nurse, years as an Admiral Nurse and subjective level of confidence in completing advance care plannings) and qualitative data (interventions perceived to increase confidence) were collected., Findings: There were 75 completed responses (two incomplete returns). There was no correlation between levels of confidence and years registered as a nurse. However, there was a small positive correlation between confidence and number of years as an Admiral Nurse ( r  = 0.23; p  < 0.05). Themes identified qualitatively to enhance practice were advanced communication skills, supervised practice, resources to frame conversations and a guide and template for advance care planning., Conclusion: Although Admiral Nurses are specialists in dementia, several educational initiatives could be employed to better enable them to support advance care planning for families affected by dementia. This training needs analysis is contributed towards developing an educational intervention for Admiral Nurses to improve advance care planning support., Competing Interests: Conflict of interest statement: The authors declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Clinical supervision has been an aspect of nursing practice in various forms for several years; however, it remains challenging to ensure its widespread implementation across healthcare organisations. There is an increasingly evident need for formalised support in nurses' busy practice settings, so it is important to improve the quality of clinical supervision in healthcare. This will also assist nurses in providing evidence of their continuing professional development as part of revalidation. This article provides an overview of clinical supervision, outlining its features and functions in healthcare practice. It includes three case studies related to group clinical supervision, discussing how this was implemented in each case and the various methods of group-working that were used., Competing Interests: None declared, (© 2019 RCN Publishing Company Ltd. All rights reserved. Not to be copied, transmitted or recorded in any way, in whole or part, without prior permission of the publishers.)

Importance: Despite its spread in much of the United States and increased international interest, the Physician Orders for Life-Sustaining Treatment (POLST) paradigm still lacks supporting evidence. The interrater reliability of the POLST form to translate patients' values and preferences into medical orders for care at the end of life remains to be studied., Objective: To assess the interrater reliability of the medical orders documented in POLST forms., Design, Setting, and Participants: This cross-sectional study was conducted in a public university hospital in southeastern Brazil. Two independent researchers interviewed the same patients or decision-making surrogates (n = 64) during a single episode of hospitalization within a time frame of 1 to 7 days. Eligible participants were hospitalized adults aged 21 years or older who were expected to remain hospitalized for at least 4 days and whose attending physician responded no to the question, Would I be surprised if this patient died in the next year? Data collection occurred between November 1, 2015, and September 20, 2016, and first data analyses were performed on October 3, 2016., Main Outcomes and Measures: Interrater reliability as measured by κ statistics., Results: Of the 64 participants interviewed in the study, 53 (83%) were patients and 11 (17%) were surrogates. Patients' mean (SD) age was 64 (14) years, and 35 patients (55%) and 8 surrogates (73%) were women. Overall, in 5 cases (8%), disagreement in at least 1 medical order for life-sustaining treatment was found in the POLST form, changing from the first interview to the second interview. The κ statistic for cardiopulmonary resuscitation was 0.92 (95% CI, 0.80-1.00); for level of medical intervention, 0.89 (95% CI, 0.76-1.00); and for artificially administered nutrition, 0.92 (95% CI, 0.83-1.00)., Conclusions and Relevance: The high interrater reliability of the medical orders in POLST forms appears to offer further support for this advance care planning paradigm; in addition, the finding that this interrater reliability was not 100% underscores the need to ensure that patients or their surrogates have decision-making capacity and to confirm that the content of POLST forms accurately reflects patients' current treatment preferences.

The process of advance care planning in dementia is far from straightforward; as dementia progresses, the ability to consider future thoughts and actions becomes compromised, thus affecting decision-making abilities. Family carers find themselves increasingly in a position where they need to inform, or directly make, decisions on behalf of the person with dementia. This article discusses the context and importance of a palliative care approach and recommends rationales and strategies for healthcare professionals to support families affected by dementia to better plan for their future care., Competing Interests: Conflict of interest statement: The authors declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article

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.

Background: In recent years, UK policy has increasingly recognised the importance of end-of-life care in dementia. While professional consensus on optimal palliative care in dementia has been reported, little is known about the perspectives of people with dementia and family carers., Aim: To compare the views of people with dementia and family carers of people with dementia (current and recently bereaved) on optimal end-of-life care., Design: Qualitative interviews (32) and a focus group were conducted. Data were thematically analysed., Setting/participants: Participants comprised people with early stage dementia, living at home in the north-east of England ( n = 11); and current and bereaved carers ( n = 25) from six services providing end-of-life care in England., Findings: Seven areas were identified as important to end-of-life care for people with dementia and/or family carers. People with dementia and carers expressed the need for receiving care in place, ensuring comfort and a skilled care team. However, they disagreed about the importance of planning for the future and the role of families in organising care and future decision-making., Conclusion: Further comparison of our findings with expert consensus views highlighted key areas of divergence and agreement. Discordant views concerning perceptions of dementia as a palliative condition, responsibility for future decision-making and the practical co-ordination of end-of-life care may undermine the provision of optimal palliative care. Professionals must explore and recognise the individual perspectives of people with dementia and family carers.

There are approximately 150 Admiral Nurses in the UK who work alongside other health and social care professionals to support people with dementia and their family carers. However, the stigma of the disease and the lack of recognition that dementia is a life limiting illness have led to neglect in addressing the end of life challenges. The small in-depth study reported here aimed to add to an extremely limited formal evidence base for the effectiveness of this approach and to develop a greater understanding of the range of knowledge and skills required of them in ensuring they are better able to support families in the later stages of the illness. Findings focus on the experiences of family carers, the impact of performing the Admiral Nurse role and the use of qualitative measures in this setting.