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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.

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 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.

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.

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.

PurposePost-diagnostic dementia care is often fragmented in the United Kingdom, with great variation in provision. Recent policies suggest moving towards better community-based care for dementia; however, little is known on how this care is delivered. This study aimed to map the post-diagnostic dementia support provided in England a decade after the introduction of a National Dementia Strategy.Design/methodology/approachA mixed-methods e-survey (open Nov 2018–Mar 2019) of dementia commissioners in England recruited through mailing lists of relevant organisations was conducted. The authors descriptively summarised quantitative data and carried out thematic analysis of open-ended survey responses.Findings52 completed responses were received, which covered 82 commissioning bodies, with representation from each region in England. Respondents reported great variation in the types of services provided. Information, caregiver assessments and dementia navigation were commonly reported and usually delivered by the voluntary sector or local authorities. Integrated pathways of care were seen as important to avoid overlap or gaps in service coverage. Despite an increasingly diverse population, few areas reported providing dementia health services specifically for BME populations. Over half of providers planned to change services further within five years.Practical implicationsThere is a need for greater availability of and consistency in services in post-diagnostic dementia care across England.Originality/valuePost-diagnostic dementia care remains fragmented and provided by a wide range of providers in England.

Talking about death and end-of-life care (EoLC) can be a sensitive topic for people affected by dementia and their families. However, recent research [1] has identified the need for people living with dementia (PLwD) to start planning timely discussions about their future care to help their family and professional carers to confidently make decisions on their behalf when they are no longer able to do so themselves [2]. This paper describes a five-stage iterative co-design approach aimed at understanding the type and nature of these sensitive discussions and developing a resource to support PLwD, their families and carers. The resource took the form of a Care Plan Guide app, as a tool to help initiate early discussions about anticipatory care planning [3] in dementia for PLwD to ensure good personalized care and that important wishes were honoured. The paper highlights the importance of the involvement and active collaboration of families living with the illness. It discusses lessons learned, reflections and recommendations for approaching co-designing healthcare digital resources for sensitive EoLC issues that may have wider applications than for PLwD alone.

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 COVID-19 pandemic has had a devastating impact on care homes in the UK, particularly for those residents living with dementia. The impetus for this paper comes from a recent review conducted by the authors. That review, a qualitative media analysis of news and academic articles published during the first few months of the outbreak, identified ethical care as a key theme warranting further investigation within the context of the crisis. To explore ethical care further, a set of salient ethical values for delivering care to care home residents living with dementia during the pandemic were derived from a synthesis of relevant ethical standards, codes and philosophical approaches. The ethical values identified were: caring, non-maleficence, beneficence, procedural justice, dignity in death and dying, wellbeing, safety and personhood. Using these ethical values as a framework, alongside examples from contemporaneous media and academic sources, this paper discusses the delivery of ethical care to care home residents with dementia within the context of COVID-19. The analysis identifies positive examples of ethical values displayed by care home staff, care sector organisations, healthcare professionals and third sector advocacy organisations. However, concerns relating to the death rates, dignity, safety, wellbeing and personhood – of residents and staff – are also evident. These shortcomings are attributable to negligent government strategy, which resulted in delayed guidance, lack of resources and PPE, unclear data and inconsistent testing. Consequently, this review demonstrates the ways in which care homes are underfunded, under resourced and undervalued.

COVID-19 has brought death and dying to the forefront, yet dementia is the most common cause of death in men and women older than 80 years Studies predict that deaths from dementia will increase from around 59 000 per year in 2014 to around 220,000 per year by 2040 This study reflects that a vital organisational response in their management of COVID-19 for families affected by dementia would provide better support for family carers to help maintain resilience and psychological and mental wellbeing The UK is arguably in a good position by having existing services to provide such support Admiral Nurses are specialists in dementia care who use a case management approach to support the whole family unit affected by dementia, from the point of diagnosis to end-of-life care, and provide continued support of family carers in bereavement

BackgroundIn the UK, most people with dementia die in the community and they often receive poorer end-of-life care than people with cancer.ObjectiveThe overall aim of this programme was to support professionals to deliver good-quality, community-based care towards, and at, the end of life for people living with dementia and their families.DesignThe Supporting Excellence in End-of-life care in Dementia (SEED) programme comprised six interlinked workstreams. Workstream 1 examined existing guidance and outcome measures using systematic reviews, identified good practice through a national e-survey and explored outcomes of end-of-life care valued by people with dementia and family carers (n = 57) using a Q-sort study. Workstream 2 explored good-quality end-of-life care in dementia from the perspectives of a range of stakeholders using qualitative methods (119 interviews, 12 focus groups and 256 observation hours). Using data from workstreams 1 and 2, workstream 3 used co-design methods with key stakeholders to develop the SEED intervention. Worksteam 4 was a pilot study of the SEED intervention with an embedded process evaluation. Using a cluster design, we assessed the feasibility and acceptability of recruitment and retention, outcome measures and our intervention. Four general practices were recruited in North East England: two were allocated to the intervention and two provided usual care. Patient recruitment was via general practitioner dementia registers. Outcome data were collected at baseline, 4, 8 and 12 months. Workstream 5 involved economic modelling studies that assessed the potential value of the SEED intervention using a contingent valuation survey of the general public (n = 1002). These data informed an economic decision model to explore how the SEED intervention might influence care. Results of the model were presented in terms of the costs and consequences (e.g. hospitalisations) and, using the contingent valuation data, a cost–benefit analysis. Workstream 6 examined commissioning of end-of-life care in dementia through a narrative review of policy and practice literature, combined with indepth interviews with a national sample of service commissioners (n = 20).SettingThe workstream 1 survey and workstream 2 included services throughout England. The workstream 1 Q-sort study and workstream 4 pilot trial took place in North East England. For workstream 4, four general practices were recruited; two received the intervention and two provided usual care.ResultsCurrently, dementia care and end-of-life care are commissioned separately, with commissioners receiving little formal guidance and training. Examples of good practice rely on non-recurrent funding and leadership from an interested clinician. Seven key components are required for good end-of-life care in dementia: timely planning discussions, recognising end of life and providing supportive care, co-ordinating care, effective working with primary care, managing hospitalisation, continuing care after death, and valuing staff and ongoing learning. Using co-design methods and the theory of change, the seven components were operationalised as a primary care-based, dementia nurse specialist intervention, with a care resource kit to help the dementia nurse specialist improve the knowledge of family and professional carers. The SEED intervention proved feasible and acceptable to all stakeholders, and being located in the general practice was considered beneficial. None of the outcome measures was suitable as the primary outcome for a future trial. The contingent valuation showed that the SEED intervention was valued, with a wider package of care valued more than selected features in isolation. The SEED intervention is unlikely to reduce costs, but this may be offset by the value placed on the SEED intervention by the general public.LimitationsThe biggest challenge to the successful delivery and completion of this research programme was translating the ‘theoretical’ complex intervention into practice in an ever-changing policy and service landscape at national and local levels. A major limitation for a future trial is the lack of a valid and relevant primary outcome measure to evaluate the effectiveness of a complex intervention that influences outcomes for both individuals and systems.ConclusionsAlthough the dementia nurse specialist intervention was acceptable, feasible and integrated well with existing care, it is unlikely to reduce costs of care; however, it was highly valued by all stakeholders (professionals, people with dementia and their families) and has the potential to influence outcomes at both an individual and a systems level.Future workThere is no plan to progress to a full randomised controlled trial of the SEED intervention in its current form. In view of new National Institute for Health and Care Excellence dementia guidance, which now recommends a care co-ordinator for all people with dementia, the feasibility of providing the SEED intervention throughout the illness trajectory should be explored. Appropriate outcome measures to evaluate the effectiveness of such a complex intervention are needed urgently.Trial registrationCurrent Controlled Trials ISRCTN21390601.FundingThis project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full inProgramme Grants for Applied Research, Vol. 8, No. 8. See the NIHR Journals Library website for further project information.

ObjectivesTo 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.DesignQualitative semi-structured telephone interviews and a focus group.SettingParticipants 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.Participants61 professionals, comprising 25 commissioners or service development leads; 25 service managers; and 11 team leads or senior staff.ResultsParticipants 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.ConclusionsOur 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.

In the UK, the quality of post-diagnostic care and support for people with dementia and their family carers is variable and depends on the availability of services in each person's local area. This article considers the support services available for families affected by dementia and discusses how telephone helplines can assist those who may have no access to other types of support. It presents a case study describing a call to the Admiral Nurse Dementia Helpline, a service run by nurses with expertise in dementia care and provided by the charity Dementia UK. This is followed by a reflection on the call from the nurse's perspective. The case study-based reflection demonstrates the complexity of providing support through a helpline and the specialist knowledge and skills required to provide the appropriate level of support.

IntroductionThe rising prevalence of dementia has led to increased numbers of people with dementia being admitted to acute hospitals. This demand is set to continue due to an increasingly older population who are likely to have higher levels of dependency, dementia, and comorbidity. If admitted to the hospital, people with dementia are at higher risk of poor outcomes during and following a hospital admission. Yet, there remains a significant lack of specialist support within acute hospitals to support people with dementia, their families and hospital staff.MethodsAdmiral Nurses are specialists that work with families affected by dementia and provide consultancy and support to health and social care colleagues to improve the delivery of evidenced based dementia care. Historically, Admiral Nurses have predominantly been based in community settings. In response to the increasing fragmentation of services across the dementia trajectory, the Admiral Nurse model is evolving and adapting to meet the complex needs of families impacted upon by dementia inclusive of acute hospital care.ResultsThe Admiral Nurse acute hospital model provides specialist interventions which improve staff confidence and competence and enables positive change by improving skills and knowledge in the provision of person-centred dementia care. The role has the capacity to address some of the barriers to delivering person centred dementia care in the acute hospital and contribute to improvements across the hospital both as a result of direct interventions or influencing the practice of others.ConclusionImproving services for people with dementia and their families requires a whole system approach to enable care coordination and service integration, this must include acute hospital care. The increasing numbers of people with dementia in hospitals, and the detrimental effects of admission, make providing equitable, consistent, safe, quality care and support to people with dementia and their families a national priority requiring immediate investment. The inclusion of Admiral Nursing within acute hospital services supports service and quality improvement which positively impacts upon the experience and outcomes for families affected by dementia.

Family carers of people with dementia often describe feelings of guilt, grief and low mood, and are also at increased risk of clinical depression. Through a skilled assessment of a carer's feelings of guilt, an Admiral Nurse identified specific psychological approaches helpful in relieving this potentially damaging and paralysing phenomenon. Person- and family-centred approaches throughout the assessment process, and addressing the needs of individual family members in expressing their individual emotions and experience to the changes in needs of the person with dementia as they become more complex, are essential to family wellbeing. Identifying and differentiating between guilt, anticipatory grief and depression are essential when planning interventions to support family carers.

Background: Most deaths occur in people over the age of 65 years, yet there is widespread evidence that older people have inequitable access to good palliative and end-of-life care. For people with dementia, there are further barriers to receiving palliative care. Identifying when older people with dementia are reaching the end of their lives is not straightforward. A palliative approach to care has been recognised as key in UK practice guidance; the National Institute of Health and Care Excellence recommends that, from diagnosis, people living with dementia should be offered flexible, needs-based palliative care that takes into account how unpredictable dementia progression can be. However there are still wide gaps in care in the dementia pathway, largely because commissioning is fragmented. Method: This paper describes the Admiral Nurse case management approach to palliative care by benchmarking its practice against the European Association of Palliative Care white paper recommendations for palliative care in dementia.

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. Electronic supplementary material The online version of this article (10.1186/s12877-018-0983-0) contains supplementary material, which is available to authorized users.

Background: The use of a practice development approach to support Admiral Nurses in caring for persons with dementia at end of life and their families. Aim: This article is an exploration and reflection on how supporting the learning of specialist nurses in dementia care can ensure their development is person-centred, innovative and valuable. Conclusions: A practice development approach towards learning and development is available to Admiral Nurses and enables the development of a supportive learning culture. As a result, the nurses are more able to provide families with specialist support when it is needed. Implications for practice: A collaborative approach to practice development with shared values and goals is essential to achieving person-centred learning Practice development must be supported by a sustainable model and skilled facilitation End-of-life care can be complex and emotive so nurses need appropriate support to enable them to be more reflective in and on practice

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.

As the incidence of dementia is increasing, so health and social care professionals are facing a challenge to deliver good quality end-of-life care. Historically, it is not an area that has been afforded much attention until recently, but interventions such as Admiral Nursing are well placed and equipped to work with and support families at this time. It is essential, in supporting a family to live as well as they can following a diagnosis of dementia, to facilitate dying well with or from dementia. This article uses a case study approach, combined with professional reflective practice, to explore the importance of good communication in the last few months, weeks and days of life in a family affected by dementia.

The presence of pain in a person with dementia can often be missed. The diagnosis of dementia can overshadow the pain-inducing symptoms of other co-morbid conditions with distress behaviours being attributed to the behavioural and psychological symptoms of dementia. Such distress behaviours of a person with dementia often have a profound and alarming effect on family carers. This Admiral Nurse case study explores the assessment and management of pain in a person with dementia in partnership with the family carer.