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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.

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.

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.

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.

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.

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.

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

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.

Our ageing population and changes in cause of death mean that increasing number of people will die in old age. In many countries, older people have had poor access to good-quality end-of-life care. Many will develop multiple comorbidities associated with age—dementia, mental health problems, and general frailty. Palliative care is an approach that aims to relieve suffering and take account of a person’s physical, psychosocial, and spiritual needs as they near the end of life. Advanced dementia is now being perceived as a ‘terminal illness’. Interventions such as antibiotics and enteral tube feeding remain in use despite little evidence that they improve quality of life or other outcomes. A person-centred approach from a multi-disciplinary team is vital in providing good-quality end-of-life care in a range of settings. The acknowledgement of anticipatory grief and provision of bereavement support are vital for some family carers.

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

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.

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.

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

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.

BACKGROUND: The balance of benefits and harms associated with enteral tube feeding for people with severe dementia is not clear. An increasing number of guidelines highlight the lack of evidenced benefit and potential risks of enteral tube feeding. In some areas of the world, the use of enteral tube feeding is decreasing, and in other areas it is increasing. OBJECTIVES: To assess the effectiveness and safety of enteral tube feeding for people with severe dementia who develop problems with eating and swallowing or who have reduced food and fluid intake. SEARCH METHODS: We searched ALOIS, the Cochrane Dementia and Cognitive Improvement Group's register, MEDLINE, Embase, four other databases and two trials registers on 14 April 2021. SELECTION CRITERIA: We included randomised controlled trials (RCTs), or controlled non‐randomised studies. Our population of interest was adults of any age with a diagnosis of primary degenerative dementia of any cause, with severe cognitive and functional impairment, and poor nutritional intake. Eligible studies evaluated the effectiveness and complications of enteral tube feeding via a nasogastric or gastrostomy tube, or via jejunal post‐pyloric feeding, in comparison with standard care or enhanced standard care, such as an intervention to promote oral intake. Our primary outcomes were survival time, quality of life, and pressure ulcers. DATA COLLECTION AND ANALYSIS: Three review authors screened citations and two review authors assessed full texts of potentially eligible studies against inclusion criteria. One review author extracted data, which were then checked independently by a second review author. We used the 'Risk Of Bias In Non‐randomised Studies of Interventions' (ROBINS‐I) tool to assess the risk of bias in the included studies. Risk of confounding was assessed against a pre‐agreed list of key potential confounding variables. Our primary outcomes were survival time, quality of life, and pressure ulcers. Results were not suitable for meta‐analysis, so we presented them narratively. We presented results separately for studies of percutaneous endoscopic gastrostomy (PEG) feeding, nasogastric tube feeding and studies using mixed or unspecified enteral tube feeding methods. We used GRADE methods to assess the overall certainty of the evidence related to each outcome for each study. MAIN RESULTS: We found no eligible RCTs. We included fourteen controlled, non‐randomised studies. All the included studies compared outcomes between groups of people who had been assigned to enteral tube feeding or oral feeding by prior decision of a healthcare professional. Some studies controlled for a range of confounding factors, but there were high or very high risks of bias due to confounding in all studies, and high or critical risks of selection bias in some studies. Four studies with 36,816 participants assessed the effect of PEG feeding on survival time. None found any evidence of effects on survival time (low‐certainty evidence). Three of four studies using mixed or unspecified enteral tube feeding methods in 310 participants (227 enteral tube feeding, 83 no enteral tube feeding) found them to be associated with longer survival time. The fourth study (1386 participants: 135 enteral tube feeding, 1251 no enteral tube feeding) found no evidence of an effect. The certainty of this body of evidence is very low. One study of PEG feeding (4421 participants: 1585 PEG, 2836 no enteral tube feeding) found PEG feeding increased the risk of pressure ulcers (moderate‐certainty evidence). Two of three studies reported an increase in the number of pressure ulcers in those receiving mixed or unspecified enteral tube feeding (234 participants: 88 enteral tube feeding, 146 no enteral tube feeding). The third study found no effect (very‐low certainty evidence). Two studies of nasogastric tube feeding did not report data on survival time or pressure ulcers. None of the included studies assessed quality of life. Only one study, using mixed methods of enteral tube feeding, reported on pain and comfort, finding no difference between groups. In the same study, a higher proportion of carers reported very heavy burden in the enteral tube feeding group compared to no enteral tube feeding. Two studies assessed the effect of nasogastric tube feeding on mortality (236 participants: 144 nasogastric group, 92 no enteral tube feeding). One study of 67 participants (14 nasogastric, 53 no enteral tube feeding) found nasogastric feeding was associated with increased mortality risk. The second study found no difference in mortality between groups. The certainty of this evidence is very low. Results on mortality for those using PEG or mixed methods of enteral tube feeding were mixed and the certainty of evidence was very low. There was some evidence from two studies for enteral tube feeding improving nutritional parameters, but this was very low‐certainty evidence. Five studies reported a variety of harm‐related outcomes with inconsistent results. The balance of evidence suggested increased risk of pneumonia with enteral tube feeding. None of the included studies assessed behavioural and psychological symptoms of dementia. AUTHORS' CONCLUSIONS: We found no evidence that tube feeding improves survival; improves quality of life; reduces pain; reduces mortality; decreases behavioural and psychological symptoms of dementia; leads to better nourishment; improves family or carer outcomes such as depression, anxiety, carer burden, or satisfaction with care; and no indication of harm. We found some evidence that there is a clinically significant risk of pressure ulcers from enteral tube feeding. Future research should focus on better reporting and matching of control and intervention groups, and clearly defined interventions, measuring all the outcomes referred to here.

The author reflects on the effects of the COVID-19 pandemic on the assessment of age-related neurological conditions, including dementia, as well as some developments like the use of telemedicine such as video consultations in memory assessment services

Commentary on: Currow DC, Davis W, Connolly A, et al . Sleeping related distress in a palliative care population: A national, prospective, consecutive cohort . Palliat Med 2021. doi: 10.1177/026921631998558 Sleep is essential for optimal mental and physical health.1 Poor sleep quality can have a negative impact and is associated with (among other things), a reduction in a person’s sense of well-being and quality of life.1 Patients in the palliative care stages of a progressive incurable disease’, with limited response to treatments, can often present with severe and changing symptoms during the final stage of life.2 Sleep disturbance is one such …

Purpose of reviewDementia is now recognized as a progressive life-limiting illness where many patients can benefit from access to palliative care.Recent findingsThe present review has focused on three areas namely, advanced care planning in supporting palliative care for dementia, hospice provision for people with dementia and provision of care within family home. In advanced care planning, there is little research on systematically developed and implemented advance care planning interventions or whether they achieve desired outcomes for end-of-life care. There is limited research on hospice-based care for patients with dementia and most studies are U.S. based. Equally studies exploring how family carers can be supported and facilitated to care at home for the person with dementia to the end of life are exploratory rather than determining what factors may be important.SummaryThere are relatively few studies, especially quantitative studies or intervention studies being carried out to determine most effective means of providing palliative care for people with dementia, particularly with respect to advanced care planning, the provision of hospice-based care and support at home. Despite increased public awareness of dementia as a terminal illness, more research is required to support patients with dementia and their families at the end of life.

Helping older people with dementia to die well is extremely important, but highly challenging. In the first article of a two-part series, Karen Harrison Dening explains how care staff can recognise when the person is dying, and how to plan care accordingly

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

Dementia is largely a disease of old age and many people with a diagnosis of dementia will also have other illnesses or disabilities for which they may be admitted to an acute hospital. However, the lack of recognition of when a person with dementia is nearing the end of their life can pose challenges and may lead to a failure to provide good palliative care. There is a need for effective communication with families who are affected by dementia, from the point of diagnosis through to end of life. Good communication with all parties involved, including discussions about prognosis and advance care planning, is essential to a shared palliative care approach that enables families to have an understanding of the goals of care and to be a part of the decision-making process. This article presents a case study to illustrate the value of good communication in maintaining supportive relationships between professionals and family carers of a person with dementia.

End-of-life care policy in the UK states that all people should identify their needs, priorities and preferences for end-of-life care in the form of advance care planning. Advance care planning in dementia is less well developed than in some other disease groups such as cancer and, arguably, may be more complex. A person with dementia may lose the capacity to make decisions associated with advance care planning early in the course of the disease, requiring more involvement of family carers. This study explores the ‘lived’ context to health care decision-making of dyads (the person with dementia and their carer) in respect of past, present and future healthcare decision-making.

Commentary on: Keeble, E, Parker, SG, Arora, S, et al . Frailty, hospital use and mortality in the older population: findings from the Newcastle 85+ study. Age Ageing 2019;48:797–802. https://doi.org/10.1093/ageing/afz094. Frailty is a common clinical syndrome in older adults that carries an increased risk for poor health outcomes including falls, incident disability, hospitalisation and mortality. Frailty is a significant determinant of healthcare use and associated costs, both of which also increase as a person nears death. In the UK, and internationally, those aged over 85 years are the fastest growing demographic group. By 2050, the number …

Commentary on: Brooker H, Wesnes KA, Ballard C, et al . An online investigation of the relationship between the frequency of word puzzle use and cognitive function in a large sample of older adults. Int J Geriatr Psychiatry 2019;34:921–31. doi: 10.1002/gps.5033. A degree of cognitive decline is common in ageing; however, it can also be a precursor to mild cognitive impairment and dementia, such as Alzheimer’s disease (AD). The population is ageing, so …

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

Older people can find hospital stays challenging and distressing. When their presenting symptoms make it challenging for healthcare professionals to differentiate between dementia, delirium and depression, their experience may be increasingly distressing, and can result in delays in diagnosis and treatment, as well as an increased risk of morbidity. This article considers each of the conditions of dementia, delirium and depression, their presenting features and how nurses can differentiate between them to enable comprehensive assessment, diagnosis and treatment in older people.

A diagnosis of dementia can have a significant effect, not only on the person diagnosed, but also on the person's family. Drivers within national policy and strategy to raise awareness and promote education have improved the understanding of dementia across professional groups, as well as within the wider population. However, families living with dementia still struggle to find information and support. This paper explores the common issues faced by families, and focuses on a relationship approach to care. The role of the community nurse can be central to supporting people with dementia and their families to live well in their own communities. The paper uses a casestudy approach to discuss three scenarios commonly raised by family carers and people with dementia: (1) seeking help and support at point of seeking diagnosis, (2) knowing the ‘right time’ to seek help and advice, and (3) when symptomatic changes affect wellbeing and relationships.

Increasing age is the strongest risk factor for developing dementia, frailty, and other co-morbid conditions. Dementia is not a disease in itself but a syndrome; a collection of symptoms: such as a decline in memory, reasoning, and communication skills, and a gradual loss of skills needed to carry out daily living activities. Whereas frailty is a distinctive health state in which multiple body systems gradually lose their in-built reserves. However, often ‘layered’ on these two may also be several other conditions that coexist within an individual. There is a growing body of evidence to support the psychosocial care for people with dementia as the disease advances but little of the effect and outcomes where there is a combination of these conditions. This chapter explores some of the issues for families affected by these conditions and the care and support that may be of benefit through case management.

Advance care planning (ACP) is widely recognised as a process to enable an individual’s preferences and wishes for palliative and end-of-life care to be recognized at a time when they no longer have the capacity to make such ‘real time’ and autonomous decisions. In dementia, it is essential that ACP be offered early in the diagnostic process and supported when the person still has the ability to do so. Often decisions about end-of-life care for a person with dementia are made in the later stages of the illness, at a point of transition or crisis and with the absence of a clear understanding of their wishes. Clinicians may then turn to family members in the assumption that they know what these would be, however, this is often not the case which can add undue pressure to families in distressing circumstances.

Background Place of death is important in end of life care and it is reported that given the right support, most people would choose to die at home. A very small minority of people with dementia die at home and knowledge gaps remain on how best to support end of life care at home for people with dementia. Aim This systematic review synthesised qualitative and quantitative studies to explore the challenges and facilitators of providing end of life care at home for people with dementia. Methods A narrative approach was adopted to provide a comprehensive synthesis of previously published literature in the area. A systematic literature search was conducted across six electronic databases (AMED, BNI, CINAHL, EMBASE, MEDLINE, and PsychInfo) and reference lists of key journals were searched up to November 2016. Included studies were appraised for quality and data thematically synthesised. Results Searches returned 1949 unique titles, of which seven studies met all eligibility criteria (four quantitative, three qualitative). All studies were rated for quality and six key themes identified – four facilitators and two challenges. Facilitators included ‘support from health care professionals’, ‘informal caregiver resilience’, ‘medications and symptom management’ and ‘appropriate equipment and home adaptations’. Challenges included ‘worsening of physical or mental health’ and ‘issues with formal services’. Conclusions People with dementia may not always require specialist palliative care at the end of life and many clinicians, services and charities support people with dementia to die well at home. Informal caregivers also provide a significant amount of this care to people. Further research is required to establish how clinicians, statutory services, voluntary agencies and volunteers can support families to allow a greater number of people with dementia to die at home and to determine what services are required to facilitate home death for people with dementia.

In recent years there has been a significant increase in policy and guidance, across many countries, to promote palliative and end-of-life care for non-malignant life-limiting conditions. Most notably for people with dementia (PWD) at the end-of-life and facilitate better access to palliative care. PWD, particularly those in the advanced stages, may experience poor end-of-life care because they may not be perceived to have a terminal illness. There is concern in some settings and services that staff are ill – equipped to care for PWD, in respect of knowledge and skills. Both Hospice UK and Dementia UK thus launched the ‘Dementia in palliative and end-of-life care Community of Practice’ to bring together practitioners keen, in the spirit of mutual learning, to share knowledge and practice and provide high quality palliative and end-of-life care for families affected by dementia. At the inaugural meeting a nominal group technique was used to identify learning needs across both groups of clinicians. Thirteen learning needs were identified, of which five were ranked as priorities to be met during future meetings. Shared learning through a community of practice is a way of harnessing the expertise across the two care domains, with the common objective of improving the lives, and deaths of PWD and in better support of their families. We hold two community meetings a year and due to increase in engagement will be hosting a conference in 2017. Events are well evaluated and membership is growing.

Distress is commonly experienced by those caring for someone with dementia, and can occur whether the carer is living with a person with dementia, or supporting a person with dementia who lives alone to maintain their independence. It is essential for health and social care professionals to support family carers to balance their needs with those of the person they care for. However, this might be challenging because many influencing factors can affect these needs, and identifying the needs of the family carer and balancing them with the needs of the person with dementia is often complex. This article uses a case study to explore the role of one Admiral Nurse (KG) in supporting the main family carer of a person with dementia, and the model of reflection used by the Admiral Nurse to undertake critical thinking and analysis in relation to their role.

As life expectancy increases so people often develop a range of conditions and disabilities in the years before death. Multimorbidity represents the most common ‘disease pattern’ found among the elderly and is characterised by complex interactions of co-existing diseases where a medical approach focused on a single disease does not suffice. People with dementia who also have other comorbidities do not always have their comorbid conditions managed as those without dementia which often lead to a high number of hospital admissions with longer lengths of stay and greater treatment costs. This case study presents the case management approach taken by Admiral Nursing in managing the complexities where there is comorbidity of a long-term condition and a diagnosis of dementia. By empowering the person and their carer with information and choices and through good case management and communication, people can be supported to live well and avoid inappropriate hospital admissions.

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

Palliative care for patients with dementia can be a challenge for clinicians where assessment of symptoms in patients who may not be able to express their needs is difficult and recognising that patients are entering the terminal phase complex. As academic clinicians we will discuss the current situation with a UK focus and review some of the recent research exploring palliative care for patients with dementia.