Access to specialist palliative care to manage pain in people dying at home: give them a VOICE

open access articleCommentary only. Implications for practice and research ► People who receive specialist palliative care or have a stated preference to die at home have a significantly higher chance of experiencing good pain relief as they die, irrespective of their disease aetiology. ► People dying with cancer receive better pain relief than those dying of non-cancer disease. ► Access to specialist palliative care services and advance care planning should be available to all; irrespective of diagnosis. ► Researchers and policymakers should consider how to ensure improvements in pain management for patients at home through advice and support from community specialist palliative care services

Palliative care in dementia: does it work?

The topic of palliative care in dementia has attracted increasing interest in recent years. Entering palliative+care+dementia into PubMed yields only 10 papers before 1990, the first from 1982. In contrast, there have been 100 or so papers in each of the last three years. The question we have set in this editorial is deliberately ambiguous. ‘Does it work?’ can be either a question about effectiveness in practice or a question about the concept of palliative care as applied to dementia and, in this regard, it’s a question as to how palliative care fits in with the journey of dementia and the other models of care that may be relevant. Conceptual In relation to dementia, palliative care could cover a huge range from the whole course of dementia from diagnosis onwards to a much narrower focus on end-of-life care. And maybe there are points in between, e.g. as a person passes from ‘living well with dementia’ to the next stage, which might be regarded as that of inexorable decline. Van der Steen et al [1] have attempted to create clearer boundaries for what we mean by ‘palliative care’ in dementia. They used a Delphi process to generate a set of core domains and then tested these on a wider international panel of experts. Most of these domains achieved consensus: the two which did not were about the importance of palliative care in relation to the stage of dementia and to provision of artificial nutrition and hydration. The first of these concerns reflected disagreement as to whether all dementia care should be relabelled as palliative care [2]. Another issue for palliative dementia care is that it has to compete with other terms that belong to other frameworks. Palliative care has a fairly simple conceptual basis (we allege) in that in the absence of a cure, health professionals should concentrate on relieving troublesome symptoms and avoiding unnecessary, potentially harmful, interventions. It has noble Classical roots – primum non nocere – that probably go back to Hippocrates. It is closely associated with ‘end of life care’ or ‘care of the dying’ which has similar sentiments but is perhaps more closely associated with the relief of pain and bringing comfort and solace. End of life care implies a clinical milieu, even if this happens to be the person’s own home. The prevailing paradigm in dementia, however, is person-centred care, which derives from the work of Kitwood and the Bradford group. By contrast to palliative care, this arises from a reaction to the medicalisation of dementia and uses social psychology to draw attention to the perspective of the person with dementia and how the actions of those around them can shape behaviour. This model has been highly attractive for the public, the voluntary sector, and workers and academics with a psychosocial bent. It is clear how person-centred care is applicable across the whole pathway of dementia. It has enabled the voice of people with dementia to be heard, so that we now have the remarkable growth of a disability movement within dementia, with bloggers, activists, and groups such as Dementia Alliance International (http://www.dementiaallianceinternational.org/). Expect further changes in the future as people living with dementia demand their rights, equality and full citizenship. Empirical Universal acceptance of palliative care in dementia would be easier if there was good research evidence that it delivers better outcomes than other forms of care. This is more difficult to test than it appears at first sight, for at least two good reasons. The first of these is that, if we take the view that all dementia care is palliative care, any trial of palliative care might need to be across the whole pathway of dementia. This is unfeasible given the length of time that such a trial would have to run, not to mention some of the methodological issues as to what outcomes are desirable and at what points in the course of the dementia they should be ascertained. The second problem is that it is customary in studies of psychosocial interventions in dementia to compare the treatment of interest with ‘usual care’. However, this is difficult too. Is palliative care an ‘intervention’? And what is ‘usual care’? And does it not already have a palliative quality? Thus, it is probably impossible to test empirically whether palliative care ‘works’ as a form of dementia care across the whole pathway. In practice, we duck this question by talking about a palliative care approach but it isn’t established whether this adds anything to what we already do. Palliative care can be tested if specific aspects of management, usually towards the end of life, are being evaluated. For example, it is perfectly possible to compare the outcomes of artificial nutrition with not providing it, in terms of survival, pain, quality of life and so on (see Sampson et al [3] for a review). Although, note that either arm of this trial can be regarded as palliative care so, even if one arm does better, this doesn’t tell us if palliative care is effective. It is simply a judgement between two palliative care options. Conclusion Applying the term palliative care in dementia has some attractions and this accounts for the expansion of recent interest. However, it is a slippery concept to use as there is no agreement as to when it is best applied to dementia and there is no evidence that any thus-labelled intervention has improved outcomes. Furthermore, this may not even be an empirical question, in which case it is either a moral question (‘how do we wish to end our lives?’) or one of popular taste. So far, the discourse has been confined to professionals and experts and the voice of people with dementia is missing. ‘Palliative’ may be too clinical a word for their taste

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

Admiral Nursing—A Model of Specialist Dementia Care in Acute Hospitals

open access articleIntroduction: The rising prevalence of dementia has led to increased numbers of people with dementia being admitted to acute hospitals. This demand is set to continue due to an increasingly older population who are likely to have higher levels of dependency, dementia, and comorbidity. If admitted to the hospital, people with dementia are at higher risk of poor outcomes during and following a hospital admission. Yet, there remains a significant lack of specialist support within acute hospitals to support people with dementia, their families and hospital staff. Methods: Admiral Nurses are specialists that work with families affected by dementia and provide consultancy and support to health and social care colleagues to improve the delivery of evidenced based dementia care. Historically, Admiral Nurses have predominantly been based in community settings. In response to the increasing fragmentation of services across the dementia trajectory, the Admiral Nurse model is evolving and adapting to meet the complex needs of families impacted upon by dementia inclusive of acute hospital care. Results: The Admiral Nurse acute hospital model provides specialist interventions which improve staff confidence and competence and enables positive change by improving skills and knowledge in the provision of person-centred dementia care. The role has the capacity to address some of the barriers to delivering person centred dementia care in the acute hospital and contribute to improvements across the hospital both as a result of direct interventions or influencing the practice of others. Conclusion: Improving services for people with dementia and their families requires a whole system approach to enable care coordination and service integration, this must include acute hospital care. The increasing numbers of people with dementia in hospitals, and the detrimental effects of admission, make providing equitable, consistent, safe, quality care and support to people with dementia and their families a national priority requiring immediate investment. The inclusion of Admiral Nursing within acute hospital services supports service and quality improvement which positively impacts upon the experience and outcomes for families affected by dementia

Registered care home managers’ experiences of responding to the national care home visiting guidance in England during the Covid-19 pandemic; a multi-method qualitative study

Background: Visiting restrictions in care homes in England and many comparable countries during the Covid-19 pandemic were extensive and prolonged. We examined how care home managers experienced, understood and responded to the national care home visiting guidance in England in developing their visiting policies. Methods: A diverse sample of 121 care home managers across England, recruited through varied sources including the NIHR ENRICH network of care homes, completed a 10-item qualitative survey. Follow-up, in-depth qualitative interviews were conducted with a purposive sub-sample of 40 managers. Data were analysed thematically using Framework, a theoretically and methodologically flexible tool for data analysis in multiple researcher teams. Findings: Some viewed the national guidance positively; as supporting the restrictive measures they felt necessary to protect residents and staff from infection, or as setting a broad policy framework while allowing local discretion. More commonly, however, managers experienced challenges. These included the guidance being issued late; the initial document and frequent, media-led updates not being user-friendly; important gaps, particularly in relation to dementia and the risks and harms associated with restrictions; guidance being unhelpfully open to interpretation while restrictive interpretations by regulators limited apparent scope for discretion; fragmented systems of local governance and poor central-local coordination; inconsistent access and quality of support from local regulators wider sources of information, advice and support that, while often valued, were experienced as uncoordinated, duplicative and sometimes confusing; and insufficient account taken of workforce challenges. Conclusions: Underlying many of the challenges experienced were structural issues, for which there have been longstanding calls for investment and strategic reform. For increasing sector resilience, these should be are urgently addressed. Future guidance would also be significantly strengthened by gathering better data, supporting well-facilitated peer exchange, engaging the sector more fully and dynamically in policy-making and learning from care home managers’ and staff’s experiences, particularly of assessing, managing and mitigating the wider risks and harms associated with visiting restrictions

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

What are the information needs of people with dementia and their family caregivers when they are admitted to a mental health ward and do current ward patient information leaflets meet their needs?

Introduction: An admission to a mental health ward is an uncertain and unexpected part of a person’s journey with dementia and consequently, families require information about what to expect and how to prepare. This study aimed to establish the information needs of people with dementia and their families at the point of admission to a mental health ward and to collate existing ward information leaflets to explore if they meet these information needs. Methods: This research was in two parts, (1) a qualitative study using focus groups, one with people with dementia and family carers with lived experience of such an admission (n=6) and another with Admiral Nurses (n=6) to explore information needs at the point of admission. (2) Each NHS mental health trust (n=67) was asked to provide a copy of their ward information shared at admission. A total of 30 leaflets were received from 15 NHS trusts, after removing duplicates 22 were included. A content analysis was conducted to evaluate to what extent leaflets met the information needs identified from focus groups. Results:Two main categories ‘honest, accurate and up to date information’ and ‘who is the information for’ and four subcategories were derived from focus group data. Participants felt that people with dementia and families were likely to have different information needs. Material for people with dementia needed to be in an accessible format. Information should cover the aim of the admission, a timeline of what to expect and details about how families will be involved in care. Practical information about what to pack and ward facilities was valued. Participants spoke about the need to consider the tone of the information given people are likely to be distressed. The information leaflets reviewed did not meet the information needs identified by focus group participants. Conclusions: People with dementia and family carers have different information needs at the point of admission to a mental health ward. Information provided to people with dementia needs to be in an accessible format with content relevant to these needs. Wards should aim to co-create information to ensure they meet people’s information need

Mapping post-diagnostic dementia care in England: an e-survey

Purpose: Post-diagnostic dementia care is often fragmented in the United Kingdom, with great variation in provision. Recent policies suggest moving towards better community-based care for dementia; however, little is known on how this care is delivered. This study aimed to map the post-diagnostic dementia support provided in England a decade after the introduction of a National Dementia Strategy. Design/methodology/approach: A mixed-methods e-survey (open Nov 2018–Mar 2019) of dementia commissioners in England recruited through mailing lists of relevant organisations was conducted. The authors descriptively summarised quantitative data and carried out thematic analysis of open-ended survey responses. Findings: 52 completed responses were received, which covered 82 commissioning bodies, with representation from each region in England. Respondents reported great variation in the types of services provided. Information, caregiver assessments and dementia navigation were commonly reported and usually delivered by the voluntary sector or local authorities. Integrated pathways of care were seen as important to avoid overlap or gaps in service coverage. Despite an increasingly diverse population, few areas reported providing dementia health services specifically for BME populations. Over half of providers planned to change services further within five years. Practical implications: There is a need for greater availability of and consistency in services in post-diagnostic dementia care across England. Originality/value: Post-diagnostic dementia care remains fragmented and provided by a wide range of providers in England

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

open access articleBackground: 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