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COVID-19 has meant that, globally, people, organisations and governments have had to make huge changes in life and work. The aim of this study is to explore the impact of working during the first wave of COVID-19 on Admiral Nurse practice (specialists in dementia care who support families affected by dementia). Semi-structured interviews were used to gather data from 19 Admiral Nurses. Themes drawn from the data show that Admiral Nurses experienced an immediate sense of impotence and helplessness, and, from there, moved through a process of adaptation to reach a new level of competence. This research provides insight into the experiences of Admiral Nurses and their adaptability in extraordinary circumstances.

Delirium is a multifactorial syndrome that, when superimposed on dementia, can lead to twice the risk of being admitted to acute care than for a person who is cognitively intact. Early detection of delirium can be a challenge, especially when there is an existing diagnosis of dementia. Despite the wealth of literature, there continues to be a widespread lack of knowledge about delirium, and under-detection in all types of health and social care settings. This lack of recognition may lead to poor health outcomes and increased mortality. There is a need for effective training for staff working in community settings, and effective communication between health and social care staff and families who are affected by delirium. Furthermore, delirium superimposed on dementia is common, and may cause distress for patients, caregivers and staff. This article will explore some of the common factors when delirium is comorbid with dementia.

Karen Harrison-Dening provides a synopsis and brief review of a selection of recently published research articles that are of interest to neuroscience nurses, highlighting key points to keep you up to date; a full reference is provided for those who wish to read the research in more detail

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 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.

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.

Resistance to care is common in people with dementia and can involve active resistance, such as shouting, or passive resistance, such as stiffening of muscles or refusing to open the mouth. Resistance occurs within a complex legal and ethical backdrop, where care staff must consider issues of consent, mental capacity, best interests and duty of care. Resistance also sits within powerful cultures of care, where care staff must resist task-orientated, dehumanising care that fails to acknowledge the personhood of people with dementia. Rather than accepting resistance as an expected part of dementia, care staff must look closer and with curiosity for underlying causes and unmet need. A biopsychosocial approach can be useful in uncovering these needs, and in allowing the structuring of a person-centred response.

Karen Harrison Dening provides a synopsis and brief review of a selection of recently published research articles that are of interest to neuroscience nurses, highlighting key points to keep you up to date. A full reference is provided for those who wish to read the research in more detail.

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 Lewy body dementia (LBD) is characterised by a complex array of symptoms. Being a family carer of someone with LBD can be challenging, and is associated with high levels of stress, depression and anxiety. Admiral Nursing services support family carers of people with dementia in the UK by providing tailored information, advice and therapeutic support. Recently, the Admiral Nurse model has been adapted to the needs of more specific populations, including the introduction of a new, specialist LBD Admiral Nurse. Objective to explore family carers’ experiences of the LBD Admiral Nurse service. Methods fourteen family carers of people with LBD were interviewed about their experiences of the LBD Admiral Nurse service. Interview transcripts were analysed using thematic analysis. Results four themes were identified: theme 1 described how participants valued the LBD Admiral Nurse’s specialist expertise, which contrasted with the lack of knowledge they encountered in other services. In theme 2, participants described how the practical, tailored support provided by the LBD Admiral Nurse enabled them to better manage a variety of caring-related challenges. Theme 3 captured the emotional benefits that participants gained from being able to talk to someone who understood their situation. In theme 4, participants explained how the reliability of the LBD Admiral Nurse’s support helped them feel supported in their role. Conclusions the specialist knowledge and expertise of the LBD Admiral Nurse enabled family carers to better support the people they cared for, and to relieve some of the emotional stress associated with caring.

Background: The veteran community are at increased risk of poor mental health and developing dementia as a result of their miliary service, with the potential to lead to delayed onset post-traumatic stress disorder (DOPTSD). The manifestation of DOPTSD may be misinterpreted as behavioural and psychological symptoms of dementia (BPSD), which create difficulties in caring for the person experiencing these distressing symptoms. Aims: This paper details the development of a screening tool for people with dementia, which aims to reframe and contextualise some of the behaviours under the lens of historic traumatic events. Methods: The utility of the screening tool is demonstrated through the presentation and an analysis of an anonymised case study to support nurse practice development. Conclusions: A trauma history tool offers a more comprehensive and interpretive view of the possible historic, trauma-related causes of current behaviours and can aid informal carers' understanding of the stress and distress reactions of their family members.

Background Nursing home residents are typically older adults with high levels of chronic illness and impairment. As such, they are particularly susceptible to severe complications and mortality from COVID-19. Since all nursing home residents are at increased risk, nursing home care staff need to know what residents would want to happen should they become infected with COVID-19. This study aims to develop and evaluate advance care planning (ACP) COVID-centric online training and information resources for nursing home staff and family members of residents, to improve care at the end of life during a COVID-19 outbreak. Based on the findings we will develop implementation guidelines for nursing homes to ensure wider impact and application during the pandemic and beyond. Methods The content of the training and information resources will be based on a rapid review of literature and guidance on ACP in the context of COVID-19 and consultation with the study expert reference group. An integrated communications company will then work alongside the research team to design the online training and information resources. To evaluate the resources, we will employ a multiple case study design where a nursing home (defined as an institutional setting in which nursing care is provided to older adults on-site 24 h a day) will be the unit of analysis or ‘case’. The RE-AIM (reach, effectiveness, adoption, implementation, maintenance) framework will guide the evaluation of implementation of the training and information resources. We will recruit and interview staff and family members from between 6 and 9 nursing homes across Northern Ireland, England and Scotland and gather quantitative data from a feedback survey included in the training and information resources. Discussion The Necessary Discussions study is very timely given the challenging experiences of nursing homes, their staff, residents and their family members during the COVID-19 pandemic. It meets a key need and addresses an important gap in research and practice. The training and information resources will be ‘COVID-centric’, but they will also have a longstanding relevance for future ACP practice in UK care homes. Trial registration ISRCTN registry (ID 18003630) on 19.05.21

Background The UK older population is higher than the global average. Over the next 20 years, England will see an increase in the number of older people who have higher levels of dependency, dementia and comorbidity, many of whom will require 24-hour residential care. It is estimated that 70% of residents in nursing and residential care homes either have dementia on admission or develop it while residing in the care home, many of who will have complex needs with high levels of multimorbidity. However, there is a lack of consistency in the provision of primary care and specialist services to this population and a known gap in knowledge and skills of dementia care in care home staff and primary care teams. Methods This article considers the current health policy drivers to enhance integrated health and social care provision to care homes and proposes a model of care that would support the aims of the NHS Long Term Plan for care to be delivered closer to home and improve out of hospital care which includes people who live in care homes by introducing Enhanced Health in Care Homes. It is crucial that such a model includes the correct skill mix to meet the needs of the care home population. Conclusions There are currently gaps in service provision to many care homes. Admiral nurse case managers and specialists in dementia care, are well placed to support the delivery of Enhanced Health in Care Homes and improve access to specialist support to care home residents, their families, care home staff and the wider health and social care system.

open access article Background Family carers of people living with dementia often need support with making decisions about care. Many find end-of-life care decisions particularly difficult. The aim of this article is to present an evidence- and theoretical-based process for developing a decision aid to support family carers of people with dementia towards the end-of-life. Methods Following a systematic process, we developed a decision aid using coproduction methods and matrices to synthesize data from a systematic review and qualitative interviews with people living with dementia and family carers. Data were presented to coproduction workshops of people living with dementia, family carers, practitioners and professionals. Development was guided by the Ottawa Decision Support Framework and a modified Interprofessional Shared Decision-Making model. Results The decision aid covers four decision areas: (1) changes in care; (2) eating and drinking difficulties; (3) everyday well-being; and (4) healthcare, tests and medication. We present an interactive decision aid, using a variety of approaches including written text, Frequently Asked Questions, top tips and illustrative quotes from people living with dementia and family carers. Conclusion This is the first decision aid that focusses on multiple decisions towards the end-of-life in dementia care. The process offers a template for others to develop decision aids or similar interventions, and how to include people living with dementia in coproduction. Patient or Public Contribution Family carers provided feedback on data collection, data analysis and the decision aid, and one is a coauthor. People living with dementia and family carers were integral to the coproduction workshops.

Admiral Nurses, hosted within the Royal British Legion, sought to reframe behavioural and psychological symptoms of dementia in veterans with a diagnosis of dementia by focusing on the symptoms of possible delayed-onset post-traumatic stress disorder. Through an innovative approach to assessment, the authors propose that a greater understanding of underlying causes for behaviours in this population may afford caregivers a greater understanding of presenting behaviours and provide a more person-centred response to their management.

The number of people with dementia in the UK is expected to significantly increase over the next two decades, which has implications for service demand and delivery, as well as for the development of the workforce across all health and social care services. The health and social care workforce requires a range of knowledge and skills to enable staff to meet the complex needs of people with dementia and their families. In the UK, a framework outlining dementia training standards was developed to address this; however, the quality and efficacy of this training is unclear and there are growing doubts that such a 'one-size-fits-all' approach can meet the diverse needs of the workforce. This article discusses the education needs of the health and social care workforce in relation to dementia and outlines how the specialist role of the Admiral Nurse can support these needs. The article also details two case studies that demonstrate the role of the Admiral Nurse in identifying and supporting the education needs of generalist nurses working in acute hospital and primary care settings.

Background The acute hospital setting has become a key site of care for people living with dementia. People living with dementia are one of the largest populations in our hospitals, with the Department of Health and Social Care recognising that 25–50% of all acute hospital admissions are people who are also living with dementia. However, people living with dementia are a highly vulnerable group in the hospital setting and, following an acute admission, their functional abilities can deteriorate quickly and significantly. Detailed research is required to explore what constitutes ‘good care’. Objectives This study’s focus was a common, but poorly understood, aspect of everyday care for people living with dementia during an acute admission, that is continence care. We asked the following questions: what caring practices are observable when interacting with this patient group? How do ward teams respond to and manage continence needs? What informs these approaches? What are staff doing and why? Design This ethnography was informed by the symbolic interactionist research tradition, focusing on understanding how action and meaning are constructed within a setting. In-depth evidence-based analysis of everyday care enabled us to examine how ward staff responded to the continence care needs of people living with dementia and to follow the consequences of their actions. We carried out a mixed-methods systematic narrative review to refine our approach to fieldwork and analysis. Setting This ethnography was carried out for 180 days, across 12 months, in six wards in three hospitals across England and Wales that were purposefully selected to represent a range of hospital types, geographies and socioeconomic catchments. Participants In addition to general observations, 108 individuals participated directly in this study, contributing to 562 ethnographic interviews. Ten detailed case studies were also undertaken with people living with dementia. Results This study identified ‘pad cultures’ as an embedded practice on these acute wards. The routine use of continence pads among people living with dementia (regardless of continence and independence) was widespread. The use of continence pads was viewed as a precautionary strategy, the rationale being to provide safeguards, ensure containment and prevent ‘accidents’ or incontinence episodes, with an expectation that patients living with dementia not only will wear pads, but will use them. Conclusions These ‘pad cultures’ enabled the number of unscheduled interruptions to the institutionally mandated timetabled work of these wards to be reduced, but had significant impacts on people living with dementia and, in turn, wider consequences for these individuals and their identities. Ward staff described feeling abandoned with the responsibility of caring for large numbers of people living with dementia, believing that it was impossible to work in other ways to support their patient’s continence. Limitations The limitations identified included the potential for the Hawthorne effect to influence data collection. Future work In collaboration with a specialist dementia care and continence teams, the findings are informing the development of education and training at the interactional and organisational level. Study registration This study is registered as PROSPERO CRD42018119495. Funding This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research; Vol. 10, No. 14. See the NIHR Journals Library website for further project information.

Background Research on the nature of a “good death” has mostly focused on dying with cancer and other life-limiting diseases, but less so on dementia. Conceptualizing common cross-cultural themes regarding a good end of life in dementia will enable developing international care models. Methods We combined published qualitative studies about end of life with dementia, focus group and individual interviews with the researchers, and video-conferencing and continuous email discussions. The interviews were audio-recorded and transcribed verbatim. The data were analyzed thematically, and the researchers developed common themes referring to their original studies. Results Fourteen qualitative researchers representing 14 cross-cultural studies covering qualitative data of 121 people with dementia and 292 family caregivers. The researchers and data were from eight countries UK, The Netherlands, Japan, Portugal, Germany, Canada, Brazil, and Ireland. Three focus groups, five individual interviews, and video-conferencing were conducted and feedback on multiple iterations was gained by 190 emails between May 2019 and April 2020 until consensus was achieved. Nine cross-culturally common themes emerged from the discussions and shared interpretation of the data of persons with dementia and family caregivers. Three represent basic needs: “Pain and Symptoms Controlled,” “Being Provided Basic Care,” and “A Place like Home.” Other themes were “Having Preferences Met,” “Receiving Respect as a Person,” “Care for Caregivers,” “Identity Being Preserved,” “Being Connected,” and “Satisfaction with Life and Spiritual Well-being.” “Care for Caregivers” showed the greatest difference in emphasis across cultures. Good relationships were essential in all themes. Conclusions The common cross-cultural themes comprise a framework underpinned by value placed on personhood and dignity, emphasizing that interdependency through relationships is essential to promote a good end of life with dementia. These themes and valuing the importance of relationships as central to connecting the themes could support care planning and further development of a dementia palliative care model. Trial registration The Graduate School and Faculty of Medicine Kyoto University (R1924–1).

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.

Contains fulltext : 251422.pdf (Publisher’s version ) (Open Access) OBJECTIVE: We aimed to develop question prompt lists (QPLs) for family caregivers of nursing home residents with advanced dementia in the context of a study involving Canada, the Czech Republic, Italy, the Netherlands, the United Kingdom and Ireland, and to explore cross-national differences. QPLs can encourage family caregivers to ask questions about their relative's end-of-life care. METHODS: We used nominal group methods to create country-specific QPLs. Family caregivers read an information booklet about end-of-life care for people with dementia, and generated questions to ask healthcare professionals. They also selected questions from a shortlist. We analyzed and compared the QPLs using content analysis. RESULTS: Four to 20 family caregivers per country were involved. QPLs ranged from 15 to 24 questions. A quarter (24%) of the questions appeared in more than one country's QPL. One question was included in all QPLs: "Can you tell me more about palliative care in dementia?". CONCLUSION: Family caregivers have many questions about dementia palliative care, but the local context may influence which questions specifically. Local end-user input is thus important to customize QPLs. PRACTICE IMPLICATIONS: Prompts for family caregivers should attend to the unique information preferences among different countries. Further research is needed to evaluate the QPLs' use.

Background: Lesbian, gay, bisexual, transgender and queer (LGBTQ+) people living with dementia are an under-served population. They are often at greater risk of vulnerability, discrimination, loneliness, health inequalities and poorer health outcomes. Aims: The aim of this applied practice paper was to produce an introductory summary of some of the challenges and considerations facing LGBTQ+ people living with dementia. This is the second in a series of clinical articles on dementia in underserved populations. Methods: A literature overview was undertaken comprising a number of literature searches. Salient academic articles, policy papers and third sector reports were analysed to identify themes. Findings: Three main themes emerged from the analysis regarding LGBTQ+ people living with dementia: an increasing awareness of needs; challenges and considerations; and recommendations for improving practice and care. Conclusions: Challenges and considerations facing LGBTQ+ people living with dementia include living with memory problems, remembering the past, reminiscence, personal relationships and receiving care. Recommendations include comprehensive training for health and care professionals, as well as strengthened peer support networks. Areas for future research to fully understand the needs of this under-served population are also suggested.

The decline of a person with dementia can be unpredictable, and decisions regarding nutrition and dietary needs can be a particular area of concern. Zena Aldridge, Maggie Parry-Hughes and Karen Harrison Dening discuss some of the challenges associated with the provision of appropriate nutritional support for people with advanced dementia

open access article 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.

Background: Dementia is an increasingly common condition, affecting over 50 million people worldwide, with approximately 850 000 living with dementia in the UK. In recent years, there has been a significant rise in the number of older prisoners, many of whom may also have dementia; however, there is little in the literature about the needs of this population. This is the first in a series of clinical articles on dementia in underserved populations. Aims: To explore current literature; academic, policy and guidance to develop an understanding of what is currently known about this population. Methods: A literature review. Findings: There is insufficient data on the amount of dementia in the ageing prison population and limited research that defines the needs of this underserved population. This results in prison services often failing to meet the needs of this underserved population, with prison staff struggling in this regard due to limited knowledge, resources and training. The Prisons and Probation Ombudsman argues the failure to strategically respond to this population leads to each prison and its local healthcare providers being left to respond in a piecemeal fashion. Conclusions: This paper discusses the demographic changes related to prisoners with dementia and details how Dementia UK and Admiral Nurses can support a specialist care solution to this underserved population.

Pain is common among older people due to the increased prevalence of age-related conditions. However, this might be misidentified and poorly managed in those with dementia. Karen Harrison Dening presents effective diagnostic and treatment strategies

BackgroundGlobal policy recommendations suggest a task-shifted model of post-diagnostic dementia care, moving towards primary and community-based care. It is unclear how this may best be delivered.AimTo assess the effectiveness and cost-effectiveness of primary care-based models of post-diagnostic dementia care.Design and settingA systematic review of trials and economic evaluations of post-diagnostic dementia care interventions where primary care was substantially involved in care plan decision making.MethodSearches were undertaken of MEDLINE, PsychINFO, EMBASE, Web of Science, and CINAHL (from inception to March 2019). Two authors independently critically appraised studies and inductively classified interventions into types of care models. Random effects meta-analysis or narrative synthesis was conducted for each model where appropriate.ResultsFrom 4506 unique references and 357 full texts, 23 papers were included from 10 trials of nine interventions, delivered in four countries. Four types of care models were identified. Primary care provider (PCP)-led care (n= 1) led to better caregiver mental health and reduced hospital and memory clinic costs compared with memory clinics. PCP-led care with specialist consulting support (n= 2) did not have additional effects on clinical outcomes or costs over usual primary care. PCP–case management partnership models (n= 6) offered the most promise, with impact on neuropsychiatric symptoms, caregiver burden, distress and mastery, and healthcare costs. Integrated primary care memory clinics (n= 1) had limited evidence for improved quality of life and cost-effectiveness compared with memory clinics.ConclusionPartnership models may impact on some clinical outcomes and healthcare costs. More rigorous evaluation of promising primary care-led care models is needed.

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.

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.

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.

Background inequalities and gaps in post-diagnostic support (PDS) for people with dementia persist despite a policy focus on dementia in England and Wales. Understanding and overcoming the factors contributing to these inequalities is vital to improve care for people living with dementia (PLWD) and their families. Objective to explore common barriers to the delivery of PDS in England and Wales and describe successful strategies to address them, drawing on examples from current practice. Design qualitative semi-structured interviews, focus groups and observation. Settings Phase 1: interviewees were drawn from multiple sectors across England and Wales, including NHS clinical commissioning groups and social care. Phase 2: six case study sites based in different sectors (primary care, secondary mental health and third sector) in England. Participants Phase 1: 61 professionals, including commissioners and service managers. Phase 2: 68 professionals, including frontline staff and those working in related services; 17 PLWD; 31 carers. Results barriers to implementing PDS in dementia were an unsupportive infrastructure, limited proactive review and limited capacity and capability particularly in primary care. Strategies used successfully in practice to address these challenges included creating opportunities for service development, improving joint working, supporting non-specialists and developing ongoing, holistic review and care planning. Conclusion a range of practical strategies have been identified to address many of the common barriers to PDS in dementia. To achieve policy goals of a task-shifted and task-shared approach to PDS, widespread use of these strategies is recommended.

The file attached to this record is the author's final peer reviewed version. The Publisher's final version can be found by following the DOI link. The impact of COVID-19 in UK care homes has been significant: for staff, residents and people with dementia. Given the rapidly changing circumstances, the media, limitations notwithstanding, have reported vital insights from the frontline. A qualitative analysis of news articles across three time points reveals the story of an emerging crisis in UK care homes, beginning with a sole focus on hospital care and resulting in tragically high death rates. This public-facing narrative has potential to: advocate for increased resources in care homes; drive government accountability; highlight improvements for care practices; bear witness to the experiences of a vulnerable population.

Delirium is a multifactorial syndrome that, when superimposed on dementia, can lead to twice the risk of being admitted to acute care than for a person who is cognitively intact. Early detection of delirium can be a challenge, especially when there is an existing diagnosis of dementia. Despite the wealth of literature, there continues to be a widespread lack of knowledge about delirium, and under-detection in all types of health and social care settings. This lack of recognition may lead to poor health outcomes and increased mortality. There is a need for effective training for staff working in community settings, and effective communication between health and social care staff and families who are affected by delirium. Furthermore, delirium superimposed on dementia is common, and may cause distress for patients, caregivers and staff. This article will explore some of the common factors when delirium is comorbid with dementia.

Despite the government’s dementia strategy and its theoretical commitment to funding dementia support services, recent financial cuts to public sector funding across the UK have led to significant reductions in provision. Carers and staff were interviewed about their experience of services. There was a mix of key themes about services more widely and an Admiral Nurse service more specifically.

There are increasing pressures on the health and social care system, particularly within acute hospital care. This has led to significant changes being implemented throughout the NHS England Long Term Plan (2019) , such as moving services closer to home and improving ‘out of hospital’ care. Intermediate care services are being developed to improve timely discharge from hospital and prevent unnecessary hospital admissions and premature transfer to residential care. An innovative intermediate care model, inclusive of Admiral Nursing, has been developed within Olympus Care Services to support families living with dementia, implementing an intensive 8-week intervention model. It is essential that intermediate services are accessible for people with dementia, inclusive of the needs of the family, and that they work within the context of integrated and collaborative models of care across traditional organisational boundaries. The aim is not only to improve resilience and quality of life, but also to offer opportunities to promote the narrative of living well with dementia. This service model illustrates how this can be achieved with inclusion of Admiral Nursing working within reablement services.

While patients diagnosed with dementia will require management from specialist neurology clinics, practice nurses play an important role in their health. Karen Harrison-Dening explains what assessment tools are available for patients with particular health needs The majority of patients are diagnosed in a memory assessment service or a neurology clinic. However, early detection of a possible dementia is often done in a primary care setting. Dementia diagnosis has been seen by some as a ‘tick-box exercise’ but there are significant benefits to patients and their families when screening or testing for dementia is carried out early, especially in supporting the patients management of other comorbid or long-term conditions. Nurses working in primary care have a key role in identifying patients who may have the signs and symptoms of dementia by enabling them to access a timely diagnosis.

This article considers to what extent a person with dementia can maintain their sense of self and identity following diagnosis of dementia. The authors discuss identity in the context of dementia and illustrate this through the use of a hypothesised case study of a woman with a diagnosis of dementia. Theories and approaches that recognise and maintain identity and presentation of self, within the context of dress and accessories, and interactions with others, are discussed. Analysis of the related literature indicates that, given the necessary resources, people with dementia can live meaningful, purposeful lives, when supported to protect and preserve their identity. The environment and the role of ‘others’ are significant factors in maintaining the identity and individuality of a person with dementia.

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.

This month sees the 20thanniversary of Nursing and Residential Care. Mark Allen, the Chairman of the Mark Allen Group and members of the NRC editorial board look back at how the care home sector and the journal have evolved over the years.

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.

Background: The UK older population is becoming increasingly ethnically diverse, with a projected eight-fold increase in dementia among black, Asian and minority ethnic communities over the next 30 years, compared with a two-fold increase in white British people with dementia. Aims: This Admiral Nurse case study explores an understanding of culture and ethnic background in families' experiences of dementia and caring using a culturagram assessment framework. Findings: The culturagram enabled a more comprehensive assessment, so that care delivery was sensitive to the specific cultural and ethnicity issues in a relationship-centred approach to dementia care. Conclusion: An understanding of the cultural influences in light of a diagnosis of dementia were essential in developing a care package that met the needs of all family members.

Foreword Hospice UK's annual conference is the national hospice and palliative care charity's flagship event, bringing together everyone involved in leading hospice, palliative and end-of-life care for adults, children and young people. In 2018, the conference spanned two days and was held at the International Centre in Telford, Shropshire. Its theme was Transforming Palliative Care and it provided a unique forum for delegates to discuss current and forthcoming issues facing the hospice and palliative care community, and to discover new ways of thinking from outside of the sector. Packed with stimulating plenary and parallel sessions, and opportunities to network with peers and meet major providers of services and products, the conference combined high-level strategic thinking, application into practice and lessons from real-world examples. More than 800 delegates from across the hospice voluntary sector, the NHS and academia attended the conference. They included a wide cross-section of people from the hospice and palliative care sector, such as chief executives, trustees, clinical directors, nurses and doctors, as well as senior staff working in income generation, communication, operations and HR. Leaders of NHS hospices, hospitals and other care providers also attended the event.