Search

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]

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]

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]

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]

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]

The number of people with dementia is expected to increase with a consequential effect on the wellbeing of families and increasing pressure on an already over-burdened health and social care system. Risk factors for dementia, both modifiable and non-modifiable, if appropriately understood and identified are amenable to management and amelioration. Community and primary care nurses are in an ideal position to support the reduction and management of risk pre and post dementia diagnosis. Using a case study, this paper highlights some of the issues in identifying, assessing and managing risk in a person with an existing diagnosis of dementia and their family/carer. The potential for dementia-related risks to escalate can have a much wider impact on a family unit if not appropriately identified, managed and mitigated against. [ABSTRACT FROM AUTHOR]

There are many challenges in providing palliative and end-of-life care to people with dementia; some of which may be reduced through advance care planning (ACP) to support the person with the diagnosis to have a greater influence on their care at end-of-life. Advance care planning has been defined as a process of discussing and recording wishes, values, and preferences for future care and treatment held between an individual, family members and their care provider(s) that takes effect when the person loses capacity. This paper considers some of the barriers and enablers to lead to better support of ACP in families affected by dementia. [ABSTRACT FROM AUTHOR]

Dementia has not traditionally been conceptualised as a terminal or life-limiting condition. Yet, dementia can significantly reduce a person's survival time from the onset of symptoms and has been shown to be similar to that of some cancers. Alongside this, with the growing number of cases of dementia expected over the coming decades, we can also expect to see the number of people dying with or from dementia increasing. Supporting good quality palliative care for people with dementia will be required by all clinicians in all care settings. This final paper in the series follows the case studies of two people with dementia as they reach the end of their lives. [ABSTRACT FROM AUTHOR]

As the population continues to age and the incidence of dementia and associated costs increases, there will be a greater need for unpaid care with research suggesting that one in three of us will become a carer for someone with dementia during our lifetime. It is estimated that there are in excess of 700,000 people in the UK acting as primary unpaid carers for people living with dementia, all of whom make a substantial contribution to their care and support. Carers of people living with dementia can experience high levels of carer burden alongside poor health and wellbeing because of their caring roles. However, they may not identify themselves as carers or be recognised as such by health and social care professionals. Consequently, they may not have access to the support they need, thus identifying and valuing unpaid carers is the first step in supporting them. Community nurses are well placed to do this. This sixth paper relating to dementia considers the contribution of unpaid carers in the context of the families of Dhriti Singh and Gregory Brewin, who we have been following throughout this series. [ABSTRACT FROM AUTHOR]

Background: There has been a shift in focus of international dementia policies from improving diagnostic rates to enhancing the post-diagnostic support provided to people with dementia and their carers. There is, however, little agreement over what constitutes good post-diagnostic support. This study aimed to identify the components of post-diagnostic dementia support. Methods: We adopted a qualitative design using interviews, focus groups and observation to explore the perspectives of key stakeholders on the content of post-diagnostic dementia support. Purposive sampling was used to identify sites in England and Wales recognised as delivering good practice. Participants included 17 people with dementia, 31 carers, 68 service managers or funders, and 78 frontline staff. Interviews and focus groups were audio recorded and transcribed for analysis. Forty-eight sessions of observation were completed and recorded in fieldnotes. Components were identified through an inductive, thematic approach and cross-checked against national guidelines and existing frameworks; they were subsequently critically reviewed by a range of experts and our mixed stakeholder panel. Results: Twenty distinct components of post-diagnostic support were identified, related to five themes: timely identification and management of needs; understanding and managing dementia; emotional and psychological wellbeing; practical support; and integrating support. The first and last of these were cross-cutting themes facilitating the delivery of a unique constellation of components of post-diagnostic support to each individual living with dementia or dyad at a particular time. Conclusions: Our work offers an empirically based framework to inform the development and delivery of holistic, integrated and continuous dementia care from diagnosis to end of life. It highlights the relevance of many components to both people living with dementia and their carers. Since the framework was developed in England and Wales, further research is needed to explore the relevance of our components to other sectors, countries and care systems. [ABSTRACT FROM AUTHOR]

Urinary and faecal incontinence are common in the older population, yet incontinence is not a normal part of ageing. Dementia can impact upon a person's ability to remain continent, yet incontinence is unlikely to be a symptom of dementia until the latter stages of disease progression. There is a misconception that nothing can be done if a person with dementia experiences episodes of incontinence. However, many people with dementia often experience functional incontinence caused by immobility, communication difficulties, disorientation, or the inability to find the toilet, which can all be alleviated if the right support and advice is available. Improving the identification, assessment and management of continence issues can not only enable people with dementia to maintain their dignity and improve their health, but also their sense of wellbeing and quality of life. There is also the possibility to improve relationships, reduce carer burden, and reduce the risk of a premature transition into a residential care setting. This fourth paper in the series explores some of the issues relating to dementia and continence and the impact as experienced by our two case studies, Dhriti Singh and Gregory Brewin. [ABSTRACT FROM AUTHOR]

Dementia is an increasingly common condition among the older population. In addition to cognitive impairment, many people diagnosed with dementia will also experience neuropsychiatric symptoms during the life course of their illness. These are referred to as the behavioural and psychological symptoms of dementia (BPSD). The presence of BPSD can be distressing for the person with dementia, their families and carers, and significantly increase carer burden. It is important that staff working in primary, community and social care have an awareness and understanding of the meanings that underlie such behaviours in order to support assessment and subsequent actions, including referral to specialist services where appropriate. This is the third paper in a series that follows two fictional families through case studies to illustrate aspects of dementia care. [ABSTRACT FROM AUTHOR]

Projections suggest that in 50 years' time there will be an additional 8.6 million people over 65 years old in the UK. As a consequence, England will see an increase in older people who have higher levels of dependency, dementia, and comorbidity. People living with dementia are likely to have on average, an additional 4.6 chronic conditions. However, the true extent of comorbidities experienced by people with dementia may be unreported and underdiagnosed as a result of their difficulties in communicating their symptoms or in others failing to observe them. There is evidence to suggest that people with dementia are less likely to access effective treatment and monitoring of their comorbid conditions compared to people without dementia who have the same comorbid conditions. This impacts negatively on their health and wellbeing. This second paper of the series relating to dementia considers some of the complications that may arise when trying to support people with dementia and comorbid conditions, and how this impacts upon the two families introduced in the first paper. [ABSTRACT FROM AUTHOR]

There is no doubt that families affected by dementia have faced many new challenges as a result of Covid-19. The suspension and closure of support services, enforced lockdown and changes to important daily routines have influenced the way in which families affected by dementia have gained support. Health and social care services have recognised the need to adapt by incorporating telehealth as a substitute to existing care models; however, some have faced challenges in providing such care to this patient population. This paper explores the use of telephone helplines as a means of support for families affected by dementia during Covid-19, commenting on the advantages and disadvantages and reflecting on the experience of a dementia specialist helpline nurse. [ABSTRACT FROM AUTHOR]

Background: Around 700,000 family caregivers provide unpaid care for 900,000 people living with dementia in the United Kingdom. Few family caregivers receive support for their own psychological needs and funding for community respite services has declined. These trends are seen across Europe as demographic and budgetary pressures have intensified due to public spending cuts arising from the 2008 financial crisis and the COVID-19 pandemic. The World Health Organization has prioritized the need to expand the provision of support for caregivers and families of people with dementia by 2025. Web-based interventions have the potential for development as they require modest investment and can be accessed by family caregivers at home. Further cost benefits can be realized by adapting existing interventions with demonstrated effectiveness for new contexts. This paper reports initial findings from the CareCoach study, which is adapting Partner in Balance (PiB), a web-based coaching intervention developed in the Netherlands, for family caregivers in the United Kingdom., Objective: This study aims to work with unpaid family caregivers and staff in adapting the Dutch web-based support tool PiB to improve its acceptability and usability for use in the United Kingdom., Methods: Accelerated Experience-Based Co-Design (AEBCD) was used with caregivers, staff, and core stakeholders. Interviews, workshops, and stakeholder consultations were conducted. Data were analyzed iteratively. Recommendations for the redesign of PiB for use across the United Kingdom were adjudicated by the study Adaptation Working Party., Results: Sixteen caregivers and 17 staff took part in interviews. Thirteen caregivers and 17 staff took part in workshops. Most (n=26) participants were White, female, and retired. All except 4 caregivers (2 male and 2 female) found the PiB's offer of web-based self-help learning acceptable. Caregivers identified complexity and lack of inclusivity in some wording and video resources as problematic. The staff took a stronger perspective on the lack of inclusivity in PiB video resources. Staff and caregivers coproduced new inclusive wording and recommended creating new videos to adapt PiB for the UK context., Conclusions: AEBCD methods facilitated the engagement of caregivers and staff and advanced the adaptation of the PiB complex intervention. An important addition to the AEBCD method in this process was the work of an Adaptation Working Party, which adjudicated and agreed to new wording where this could not be established in consultation with caregivers and staff., Trial Registration: ISRCTN Registry ISRCTN12540555; https://doi.org/10.1186/ISRCTN12540555., (©Fiona Scheibl, Lizzy Boots, Ruth Eley, Christopher Fox, Fergus Gracey, Karen Harrison Dening, Jan Oyebode, Bridget Penhale, Fiona Poland, Gemma Ridel, Juniper West, Jane L Cross. Originally published in JMIR Formative Research (https://formative.jmir.org), 22.05.2024.)

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