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Advance care planning (ACP) is increasingly recognised in the global agenda for dementia care. The European Association for Palliative Care (EAPC) Taskforce on ACP in Dementia aimed to provide recommendations for policy initiatives and future research. We conducted a four-round Delphi study with a 33-country panel of 107 experts between September, 2021, and June, 2022, that was approved by the EAPC Board. Consensus was achieved on 11 recommendations concerning the regulation of advance directives, equity of access, and dementia-inclusive approaches and conversations to express patients values. Identified research gaps included the need for an evidence-based dementia-specific practice model that optimises engagement and communication with people with fluctuating and impaired capacity and their families to support decision making, while also empowering people to adjust their decisions if their goals or preferences change over time. Policy gaps included insufficient health services frameworks for dementia-inclusive practice. The results highlight the need for more evidence and policy development that support inclusive ACP practice models.

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

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

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

Why you should read this article: • To better understand the areas of risk that may become apparent across the life course of dementia • To recognise the ethical issues posed by trying to eliminate the risk of harm for people living with dementia • To consider how the principles of safeguarding apply to risk management in dementia care. What constitutes a risk for a person living with dementia may be perceived and prioritised differently by nurses from varying clinical backgrounds. Furthermore, risk may be perceived differently according to the context. This article outlines some of the social, psychological and physical risk factors relevant to people living with dementia across the life course of the condition. It is important that nurses understand their role in identifying, assessing and managing risk and are aware of the resources, policies, legislation and processes designed to support decision-making and minimise the risk of harm to people living with dementia, their families and carers. The authors hope that this article will support nurses to become more confident in identifying risk while encouraging them to adopt a proactive and person-centred approach to risk assessment and management. [ABSTRACT FROM AUTHOR]

SUMMARY: The COVID-19 pandemic significantly increased the challenges faced by families affected by dementia, leading to an immediate increase in both the number of calls received by Dementia UK's Admiral Nurse Dementia Helpline and the levels of distress and complexity of the calls. Consequently, Admiral nurses experienced feelings of helplessness, echoed in the experiences of other health professionals. One of the approaches that enabled Admiral nurses to cope during this time was 'hope', and this article explores the use of hope-based approaches as tools for working therapeutically with families during the pandemic. Although written from the perspective of Admiral nurses, the approaches described are transferable to others working across health and social care. The article provides an overview of one of the main models of hope in the healthcare literature, Snyder's hope model, and explores the literature on hope more widely. Fictitious case vignettes, drawn from clinical practice during the pandemic, are used to illustrate how hope-based approaches can be applied to practice. [ABSTRACT FROM AUTHOR]

Background: Advance care planning in dementia includes supporting the person and their family to consider important goals of care. International research reports the importance of psycho-social-spiritual aspects towards end of life. Aim: To develop a multidimensional international palliative care goals model in dementia for use in practice. Design: International Delphi study integrating consensus and evidence from a meta-qualitative study. The Delphi panel rated statements about the model on a 5-point agreement scale. The criteria for consensus were pre-specified. Setting/participants: Seventeen researchers from eight countries developed an initial model, and 169 candidate panellists were invited to the international online Delphi study. Results: Panellists (107; response 63.3%) resided in 33 countries. The model comprised four main care goals: (1) Comfort ensured; (2) Control over function maintained; (3) Identity protected and personhood respected and (4) Coping with grief and loss−person and caregiver supported. The model reflects how needs and care goals change over time with the progression of dementia, concluding with bereavement support. The first version of the model achieved a consensus after which it was slightly refined based on feedback. We did not achieve a consensus on adding a goal of life prolongation, and on use of the model by people with dementia and family themselves. Conclusion: A new palliative care goals model for people with dementia and their families includes relationship aspects for use by professionals and achieved a consensus among a panel with diverse cultural background. The position of life prolongation in relation to palliative care goals needs further research. [ABSTRACT FROM AUTHOR]

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

The population is ageing and so we are seeing an increase in the prevalence and incidence of age-related conditions, such as frailty and dementia. These two conditions can often go 'hand in hand', making it important to ensure appropriate recognition, assessment and then management of each when experienced together. This paper uses a case study approach to illustrate and discuss the issues as relating to community nurse practice. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To be aware of the challenges in care that can arise when a person living with dementia develops cancer • To recognise the importance of cancer screening and assessment in people living with dementia • To consider how the treatment and care of people living with dementia and comorbid cancer could be improved Data regarding the prevalence of dementia and the prevalence of cancer suggest that a relatively large number of older people living with dementia may also have unsuspected comorbid cancer. Research into dementia and comorbid cancer is limited. The existing literature shows that people living with dementia have much lower cancer survival rates than people who do not have dementia, perhaps due to advanced age and cancer being diagnosed at a late stage or not at all. In people with dementia, investigating and managing cancer is complicated by cognitive impairment, atypical presentation, communication difficulties and potential behavioural issues – all of which may deter healthcare professionals from conducting patient assessments and screening tests. In this article, the authors use a case study to illustrate the challenges that can arise when a person living with dementia develops cancer, particularly in relation to diagnosis, pain assessment, decision-making and carer involvement. [ABSTRACT FROM AUTHOR]

As the population ages and so do the numbers of people with dementia, there will also be an increase in the number of unpaid family carers. Estimates suggest that one in three of us will become a carer for someone with dementia during our lifetime, some caring for more than one person diagnosed with dementia in their family. There are currently over 700 000 people in the UK acting as primary unpaid carers for people with dementia, all of whom make a substantial contribution, both financially and physically, to their care and support. Carers of people with dementia can experience high levels of carer burden and distress as well poor health and wellbeing due to their caring roles. However, they can sometimes be less than visible to health and social care services as they may not identify themselves as carers or their needs may not be easily recognised which leaves them at risk. Identifying people in caring roles and assessing their needs are the first two steps in supporting them. Community nurses are well placed to do this within their roles. [ABSTRACT FROM AUTHOR]

Dementia is an umbrella term used to describe a group of symptoms characterised by behavioural changes, loss of cognitive and social functioning brought about by progressive neurological disorders. It is estimated that around one million people live with a dementia in the UK, with that figure set to rise to 1.2 million by the year 2040. We are learning more about the risk factors for developing dementia over the life course. This paper discusses the non-modifiable and modifiable risk factors for dementia and considers health promotion and health education activities that can be used by community nurses. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To recognise the importance of increasing professional and public understanding of non-modifiable and modifiable risk factors for dementia • To identify the opportunities that nurses working in primary care have to promote brain health and dementia prevention • To consider how you could support people to make lifestyle changes that may reduce their risk of dementia It is expected that the prevalence of dementia will continue to rise over the coming years, with subsequent effects on the well-being of families and increasing the pressure on an already over-burdened health and social care system. This article discusses the modifiable and non-modifiable risk factors for dementia and suggests potential interventions to support the reduction and management of dementia-related risks in primary care. It uses a case study to demonstrate the benefits of a dementia specialist Admiral Nurse role in primary care. The potential for dementia-related risks to escalate can have a wider effect on a person's family if these are not appropriately identified and managed through specialist support. [ABSTRACT FROM AUTHOR]

Due to its progressive nature, dementia is now the leading cause of death in England and Wales, so a palliative approach to care is beneficial because of its emphasis on supportive care. Many people with dementia also have other comorbid health conditions common in older age, that in themselves may induce pain. However, people with dementia may have difficulty in understanding what they are feeling and in describing and locating the pain due to having issues with communicating their needs as their dementia progresses. This paper considers the recognition, assessment, treatment and management of pain in older people with dementia. It introduces the learner to what is known about the subject and why it is important to know the person's past history and previous ways of self-managing pain and discomfort using information gained from their family, carers and friends. [ABSTRACT FROM AUTHOR]

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

Telling stories and story-making is integral to our consciousness and lived experience and is part of what it is to be human. Stories can be told about many different topics and shared in many different ways -- whether spoken, written down, or told through film or photography. Life story work (LSW) has been used therapeutically over several decades, initially with children in the adoption process and more recently in dementia care. It involves the intentional or planned efforts to encourage people to think about, remember, share and record information about themselves. Life story work, its purpose, development and use are considered a cornerstone to providing person-centred care for people with dementia. This article discusses the origins of life stories in dementia and goes on to consider their different formats and how to initiate LSW in people with dementia. [ABSTRACT FROM AUTHOR]

Background: The need to improve support following a diagnosis of dementia is widely recognised, but it is unclear how this can best be achieved within UK health and social care systems. A task-shared and task-shifted approach has been recommended, but there is limited guidance on how to achieve this in practice. As part of a programme of research, we developed an intervention to enhance the role of primary care in post-diagnostic care and support for people living with dementia and carers. Methods: We used the Theory of Change to develop a complex intervention informed by initial literature reviews and qualitative work. The intervention was developed through an iterative series of workshops, meetings and task groups with a range of stakeholders, including the multidisciplinary project team, people living with dementia and carers, service managers, frontline practitioners, and commissioners. Results: 142 participants contributed to intervention development through face-to-face or virtual meetings. The intervention comprises three complementary strands of work focusing on: developing systems, delivering tailored care and support, and building capacity and capability. Clinical dementia leads, based in primary care networks, will facilitate the intervention providing tailored expertise and support. Conclusion: The Theory of Change proved useful in providing structure and engaging stakeholders. The process was challenging, took longer and was less participative than intended due to restrictions caused by the COVID-19 pandemic. We will next conduct a feasibility and implementation study to explore whether the intervention can be successfully delivered within primary care. If successful, the intervention offers practical strategies for delivering a task-shared and task-shifted approach to post-diagnostic support that could be adapted for similar health and social care contexts internationally. [ABSTRACT FROM AUTHOR]