Stakeholder Consultation to Establish Research Priorities for Specialist Dementia Nursing in the United Kingdom.

INTRODUCTION: In the United Kingdom, there are a growing number of specialist dementia nurses called Admiral Nurses. Admiral Nurses, supported in their professional development and clinical supervision by the charity Dementia UK, work with families affected by dementia using a relationship-centred approach. Given the growing need for this type of support, Dementia UK is committed to research that will expand the evidence base for Admiral Nursing. This article describes a stakeholder consultation to identify research priorities for Admiral Nursing for the next 3 years (2023-2026). METHODS: We adopted a participatory approach using an adapted Nominal Group Technique and priority-setting workshop. All elements of the process were designed in consultation with a steering group comprising a range of stakeholders, including people with dementia, carers, Admiral Nurses, Dementia UK staff and researchers. Stakeholders were identified as those who were likely to be affected by or interested in the emerging research priorities. Nominal groups were held both face-to-face and online. A total of 144 people shared their research priorities. Data generated through each nominal group were thematically analysed and then ranked in order of priority. RESULTS: Four themes reflecting research priority areas were taken to a priority-setting workshop for consideration. This resulted in three research priorities for Admiral Nursing: (1) people with dementia who live alone and carers who provide support from a distance; (2) people living with young onset and rarer dementia and their families; and (3) people living with multiple health conditions alongside dementia, including mental health problems. Risk, diversity and the effectiveness of Admiral Nursing were strands that ran throughout these themes. CONCLUSIONS: We identified shared research priorities for Admiral Nursing using a rigorous, consensus-driven approach involving key stakeholders. These priorities reflect a desire to ensure that Admiral Nursing services reach the most vulnerable people living with dementia and their families and respond to the widening health and social care inequalities faced by this group. PATIENT AND PUBLIC CONTRIBUTION: People with dementia and carers were involved in the design of this process as members of our steering group and through consultation on our initial plans with Dementia UK's Lived Experience Advisory Panel (LEAP). People living with dementia and carers also participated in consultation groups to share their views on research priorities. All stakeholders were invited to share feedback on the themes as part of the analysis and interpretation of the priorities, and a meeting was held with LEAP to discuss the emerging priorities.

Innovative and best models of palliative and end-of-life care - with focus on rural and remote communities.

PURPOSE OF REVIEW: The review aims to synthesize the most recent innovative models of palliative care being delivered in rural and remote locations. RECENT FINDINGS: Worldwide, as the ageing population grows, more people will require palliative care. However, equal availability of high-quality palliative care services remains a significant challenge, particularly in rural and remote communities. Innovative models of palliative care have been developed to address the projected need of people in rural and remote areas. Models that leverage the use of digital healthcare (such as telecare and Artificial Intelligence), the non-specialized palliative care workforce (such as GPs, pharmacists, and family carers), and community driven approaches have demonstrated success in achieving positive palliative care outcomes, such as reduced physical and emotional distress, and family carers feeling more supported. SUMMARY: There is a need to support people to remain within their rural and remote communities towards the end-of-life (EOL). While some models of care have been identified to help with this, there continues to be significant difficulties in access to health and social care in rural and remote areas. It is important we build on this research to understand more broadly the models of support for those living in remote and rural communities at the EOL.

Supporting distress behaviours in people with dementia in the community.

The outward signs of distress can take many forms, including agitation, aggression, apathy, anxiety and depression and is experienced by most people with dementia at some point during the disease trajectory. Supporting people with dementia who experience distress can pose a significant challenge to community nurses who may lack the time, knowledge and skills to manage distress effectively. This article discusses distress in dementia, including the interplay between stress and distress, examines the various forms of distress and its causes. The article also presents two fictionalised case studies, drawn from the authors' clinical experience, demonstrating evidence-based approaches community nurses can use in their practice to support people with dementia who experience distress.

Dementia, comorbidity and multimorbidity.

Many people living with dementia will also have multimorbidity comprising several other intercurrent, long-term and comorbid conditions. This article examines the relationship between such conditions in the context of dementia, giving an overview of the literature, including prevalence and some of the common conditions that can coexist with dementia. The theory and evidence-base will be tied together using a case study approach, to illustrate the complexity of managing comorbid conditions and multimorbidity alongside dementia, and explore some of the approaches that can be used by community nurses to support the overall health of people living with dementia that they work with.

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.

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.

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.

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).