An alternative theoretical approach to develop a new conception about pain in people with dementia.

The theoretical approach presented in this paper describes a novel experimental-theoretical methodology to conceptualise pain in people with dementia. Existing procedures for assessment of pain rely on subjective self-report using pain questionnaires and rating scales that have proven to be highly problematic where a person has dementia. Consequently, pain in people with dementia can be undetected and/or undertreated. To address that, we have developed an alternative experimental approach that builds on theoretical and methodological precedents from the arts, humanities and social sciences, for instance, visual thinking strategies, creative thinking or two-step flow of communication. Based on this approach, we designed an experimental workshop setting to ingrate these methodologies to explore pain and its expression in people with dementia. This had led to a new definition of pain as an interruption of the socially mediated process of bodily meaning-making. Furthermore, our experimental methodology could equally well be applied as a training method, where professional staff can intervene into existing implicit meanings and understandings of medical issues. These results emphasise that the future of pain research needs to consider the relational aspects of pain more seriously.

Incorporating advance care planning in dementia care.

Recent policy focus in dementia care has been on living well with the condition; however, being able to die well with dementia is of equal importance. Advance care planning (ACP) enables people to consider, express and record their wishes and preferences for palliative and end of life care, however there is a low uptake of ACP in people with dementia. Although ACP discussions should be initiated as soon as possible after a diagnosis of dementia, there are other opportunities and transition points in the person's care during which health and social care professionals could promote, engage in and support ACP discussions. This article considers the importance of ACP in dementia care and uses a case study to explore opportunities for initiating and engaging in ACP with people with dementia.

Community support for families affected by dementia.

This paper provides and overview of the community support services that may be available for people with dementia and their family carers. The authors introduce dementia, including the impact of the diagnosis on both the person with dementia and the wider family. Using a case study approach, the authors describe the support available, spanning health and social care and third sector organisations. They discuss how this support can enable people with dementia and their carers to maintain wellbeing and cope with the impact of dementia. This article will be of interest to community nurses, and health and social care professionals more generally, who may encounter families affected by dementia in community settings. Having a good knowledge of the support available and how to access it will allow community nurses to capitalise on the health promotion opportunities presented to them, when they come into contact with families affected by dementia in the course of their day-to-day practice.

Incontinence in people living with dementia.

Dementia and incontinence are both prevalent in older age; yet, neither are an inevitable or normal part of ageing. It has been recognised that there is a skills and knowledge gap in professionals assessing and managing incontinence for people living with dementia. All too often, assumptions are made that incontinence is a symptom of dementia and that nothing can be done if a person living with dementia experiences episodes of incontinence. While dementia may impact on a person's ability to remain continent, it may not be the sole cause, and there may be treatments and strategies that can reduce the incidence in those affected. Therefore, a person-centred continence assessment should be undertaken to promote continence and reduce the impact of incontinence for people living with dementia and those who care for them. This paper will highlight some of the issues that are important for health and social care professionals to explore and identify, assess and manage incontinence to improve outcomes for families affected by dementia.

An exploration of how specialist dementia nurses perceive and maintain the skills and competencies that frame their specialism: A qualitative survey.

Background: UK policy for complex and long-term health conditions including dementia has recommended that specialist nursing intervention is offered across the trajectory of the condition, but there is a lack of agreement regarding the skills and competencies that specialist nurses are expected to possess. Admiral Nurses are the largest UK group of specialist dementia nurses. Objective: To explore how Admiral Nurses met and were supported to meet competencies as defined in the Admiral Nurse Competency Framework, and to develop and maintain skills as dementia specialists. Design: Cross-sectional, semi-structured survey. Setting: Online national survey. Participants: Admiral (specialist dementia) Nurses. Methods: We co-designed our survey with Admiral Nurses; then invited Admiral Nurses to complete it in 2022-23 Data were analysed thematically. Results: 68 (20% of all Admiral Nurses) completed the survey; most were female (85.2%), from a white ethnic group (88.2%); they reported on average 24 years of nursing experience. We identified three themes in responses: 1.Having time and skills for meaningful support, explored how participants were resourced with time and skills to understand and address family carer client needs by active listening, tailoring person-centred support, and "walking alongside" families. 2.Partnering family carers, concerned how they co-designed interventions with family carers, learning from these collaborative partnerships where expertise was shared. 3.Practice and peer-based learning, explored how participants took responsibility for using available training, peer learning and self-reflection to develop their practice. Conclusions: Admiral Nurse roles enabled respondents to develop as autonomous practitioners and to access resources that supported them to build and sustain their dementia specialist practice. Learning was practice based, through partnerships with family carer clients, peer support and self-directed learning. Specialist nursing models may help address the global health workforce emergency, through enabling creative practice development and valued roles that support retention of experienced nurses.

Dementia and communication.

People with dementia of all stages and subtypes can experience challenges with communicating. Therefore, it is vital that community nurses working with people with dementia have an understanding of the ways in which communication might be challenged, and that they have skills in communicating effectively. This article presents an overview of the ways in which dementia might impact on communication and offers the model of person-centred dementia care as a way of communicating effectively. The use of person-centred communication in practice is illustrated through a case study approach, highlighting the practical approaches that can be used by community nurses in their practice.

Caring for a person living with dementia: identifying and assessing a carer's needs.

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.

Modifiable and non-modifiable risk factors for dementia: what primary care nurses need to know.

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. There are estimated to be 944 000 people living with dementia in the UK and it is indicated that this will increase to 2 million by 2051. We are learning more about the risk factors for developing dementia over the life course. This paper discusses the modifiable and non-modifiable risk factors for dementia and considers health promotion and health education activities that can be used in a primary care setting.

Who am I? Identity, person-centred care and dementia.

Identity is a central aspect of our lives. Who we believe ourselves to be has profound implications on how we interact with and interpret the world around us. People with dementia often experience stigma and suboptimal care because of a perception that they have 'lost their identity' as the cognitive symptoms associated with the condition progress. This notion is challenged by proponents of person-centred care who argue that a person's identity and worth are based on more than cognitive abilities. Person-centred care is a holistic approach that takes account of the entirety of a person's life and provides support that respects the individual and their self-identity. Since identity is vital to well-being, delivery of person-centred care must involve actively seeking a person's concept of self to tailor their care to meet all their needs. This article considers the importance of identity and personhood for people with dementia and their carers in the context of person-centred care. The article includes two case studies to illustrate these concepts in practice.

Person-centred communication with people with dementia.

Communication is a two-way process of exchanging or sharing information and is an essential element of the nursing process. Challenges with communication are a feature of all types of dementia, so understanding how dementia affects communication and how to support people is important for all nurses. This article provides an overview of communication in dementia care. The authors draw on the literature on communication and dementia to present evidence-based, practical approaches for supporting person-centred communication with people with dementia.

Admiral Nursing: supporting generalist nurses to work with families affected by dementia.

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

'It's just incredible the difference it has made': family carers' experiences of a specialist Lewy body dementia Admiral Nurse service.

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

Cross-cultural conceptualization of a good end of life with dementia: a qualitative study.

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

Developing country-specific questions about end-of-life care for nursing home residents with advanced dementia using the nominal group technique with family caregivers.

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

Developing and evaluating online COVID-centric advance care planning training and information resources for nursing staff and family members in nursing homes: the necessary discussions study protocol.

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.

Implementing post-diagnostic support for people living with dementia in England: a qualitative study of barriers and strategies used to address these in practice.

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.

A decision aid to support family carers of people living with dementia towards the end-of-life: Coproduction process, outcome and reflections.

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.

Ethical care during COVID-19 for care home residents with dementia.

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