Advance care planning in dementia: understanding the preferences of people with dementia and their carers

The UK End of Life Care Strategy proposed that all people should identify preferences for end of life care. Aims To explore whether family carers of a person with dementia (PWD) can accurately predict their preferences for end of life care and what factors influence this. Methods: This mixed methods study began with nominal groups to explore if PWD and carers could generate and prioritise preferences for end of life care and how much carers influenced the PWD’s choices. The second phase involved 60 dyad interviews using a modified Life Support Preferences Questionnaire to assess whether carers of PWD could predict the PWD’s preferences for treatment in three health states. The influence of carer burden and distress, and relationship quality, on a carer’s ability to predict the PWD’s treatment preferences were measured. This was examined further by qualitative interviews to provide personal contexts to decision making. Results: In nominal groups, PWD found it difficult to conceive of their future selves and think about preferences for end of life care. Carers’ views were influenced by their experiences of caring and negative media coverage of dementia and, when together, carers tended to override the PWD’s views. In interviews, carers could predict the PWD’s preferences in the here-and-now but were less accurate in future hypothetical health states. PWD and carers showed marked uncertainty about end of life treatment choices. Relationship quality, carer distress and burden had no influence on accuracy of prediction. Qualitative interviews revealed that while dyads claimed to have a shared decision making approach, joint healthcare decision making had largely been untested. Conclusions: Families affected by dementia require practical and emotional support at the outset to enable them adapt to changes in usual patterns of decision making, prepare for changes ahead and ensure, where possible, that the PWD’s preferences are upheld

Advance care planning in dementia: recommendations for healthcare professionals

The process of advance care planning in dementia is far from straightforward; as dementia progresses, the ability to consider future thoughts and actions becomes compromised, thus affecting decision-making abilities. Family carers find themselves increasingly in a position where they need to inform, or directly make, decisions on behalf of the person with dementia. This article discusses the context and importance of a palliative care approach and recommends rationales and strategies for healthcare professionals to support families affected by dementia to better plan for their future care

Advance Care Planning for older people: The influence of ethnicity, religiosity, spirituality and health literacy

The file attached to this record is the author's final peer reviewed version.Older people from cultural and ethnic minorities have low access to palliative or end-of-life care and there is poor uptake of Advance Care Planning by this group across a number of countries where Advance Care Planning is promoted. For many, religiosity, spirituality and health literacy are significant factors that influence how they make end-of-life decisions. Health literacy issues have been identified as one of the main reasons for a communication gaps between physicians and their patients in discussing end-of-life care, where poor health literacy, particularly specific difficulty with written and oral communication often limits their understanding of clinical terms such as diagnoses and prognoses. This then contributes to health inequalities given it impacts on their ability to use their moral agency to make appropriate decisions about end-of-life care and complete their Advance Care Plans. Currently, strategies to promote Advance Care Planning seem to overlook engagement with religious communities. Consequently, policy makers, nurses, medical professions, social workers and even educators continue to shape Advance Care Planning programmes within the context of a medical model. The ethical principle of justice is a useful approach to responding to inequities; and to promote older peoples’ ability to enact moral agency in making such decisions

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

Better Palliative Care for people with a Dementia: Summary of InterdisciplinaryWorkshop Highlighting Current Gaps and Recommendations for Future Research

Background: Dementia is the most common neurological disorder worldwide and is a life-limiting condition, but very often is not recognised as such. People with dementia, and their carers, have been shown to have palliative care needs equal in extent to those of cancer patients. However, many people with advanced dementia are not routinely being assessed to determine their palliative care needs, and it is not clear why this is so. Main body: An interdisciplinary workshop on "Palliative Care in Neurodegeneration, with a focus on Dementia", was held in Cork, Ireland, in May 2016. The key aim of this workshop was to discuss the evidence base for palliative care for people with dementia, to identify 'gaps' for clinical research, and to make recommendations for interdisciplinary research practice. To lead the discussion throughout the day a multidisciplinary panel of expert speakers were brought together, including both researchers and clinicians from across Ireland and the UK. Targeted invitations were sent to attendees ensuring all key stakeholders were present to contribute to discussions. In total, 49 experts representing 17 different academic and practice settings, attended. Key topics for discussion were pre-selected based on previously identified research priorities (e.g. James Lind Alliance) and stakeholder input. Key discussion topics included: i. Advance Care Planning for people with Dementia; ii. Personhood in End-of-life Dementia care; iii. Topics in the care of advanced dementia at home. These topics were used as a starting point, and the ethos of the workshop was that the attendees could stimulate discussion and debate in any relevant area, not just the key topics, summarised under iv. Other priorities. Conclusions: The care experienced by people with dementia and their families has the potential to be improved; palliative care frameworks may have much to offer in this endeavour. However, a solid evidence base is required to translate palliative care into practice in the context of dementia. This paper presents suggested research priorities as a starting point to build this evidence base. An interdisciplinary approach to research and priority setting is essential to develop actionable knowledge in this area

Articulating the Unique Competencies of Admiral Nurse Practice

Purpose: This article describes the process of developing a contemporary competency framework for Admiral Nurses in dementia care. Design/methodology/approach: Information and evidence was gathered from research and policy literature regarding competencies to deliver advanced practice within dementia care. An online survey completed by 75 Admiral Nurses with follow-up interviews clarified current practice across the range of service contexts in which they work. A focus group of people living with dementia and family carers, and a reference group of practitioners helped to develop a competency framework which was refined through focus groups with Admiral Nurses working in different areas. Findings: The literature review, survey and interviews provided a framework grounded in up-to-date evidence and contemporary practice. There was broad agreement in the literature and the practitioners’ priorities regarding the core competencies of advanced practice, with constructive suggestions for making the framework useable in practice. This resulted in a robust framework articulating the competencies of Admiral Nurses which could be used for continuous professional development. Research limitations/implications: Practical implications: Social Implications: Originality/value: Engaging the Admiral Nurses ensured the competencies were contemporary, succinct and applicable within practice, and also cultivated a sense of ownership. Developing the competency framework with the Admiral Nurses not for them provides an approach which may have value for professionals undertaking a similar process in their specialist area. It is anticipated the competency framework will provide further evidence of the benefits of specialist nurse support for families affected by dementia

What works in managing complex conditions in older people in primary and community care? A state‐of‐the‐art review

This is the final version. Available on open access from Wiley via the DOI in this recordThe number of older people living with complex health conditions is increasing, with the majority of these managed in primary and community settings. Many models of care have been developed to support them, however there is mixed evidence on their value and they include multiple overlapping components. We aimed to synthesise the evidence to learn what works for managing complex conditions in older people in primary and community care. We carried out a state-of-the-art review of systematic reviews. We searched three databases (Jan 2009-Jul 2019) for models of primary and community care for long-term conditions, frailty, multimorbidity and complex neurological conditions common to older people such as dementia. We narratively synthesised review findings to summarise the evidence for each model type and identify components which influenced effectiveness. Out of 2129 unique titles and abstracts, 178 full texts were reviewed and 54 systematic reviews were included. We found that models of care were more likely to improve depressive symptoms and mental health outcomes than physical health or service use outcomes. Interventions including self-management, patient education, assessment with follow-up care procedures, and structured care processes or pathways had greater evidence of effectiveness. The level of healthcare service integration appeared to be more important than inclusion of specific professional types within a team. However, more experienced and qualified nurses were associated with better outcomes. These conclusions are limited by the overlap between reviews, reliance on vote counting within some included reviews, and the quality of study reports. In conclusion, primary and community care interventions for complex conditions in older people should include: (i) clear intervention targets; (ii) explicit theoretical underpinnings; and (iii) elements of self-management and patient education, structured collaboration between healthcare professionals and professional support. Further work needs to determine the optimal intensity, length, team composition and role of technology in interventions.Alzheimer’s SocietyNIH

Task-shifted approaches to postdiagnostic dementia support: a qualitative study exploring professional views and experiences

open access articleObjectives To explore the views of commissioners, service development leads, service managers and senior staff in selected dementia services on increasing the role of primary care in postdiagnostic support for people with dementia. Design Qualitative semi-structured telephone interviews and a focus group. Setting Participants were drawn from National Health Service (NHS) Clinical Commissioning Groups, social care commissioning and a range of dementia services across primary care, secondary mental healthcare, social care and the third sector. All participants were based in England or Wales. Participants 61 professionals, comprising 25 commissioners or service development leads; 25 service managers; and 11 team leads or senior staff. Results Participants had varied views on whether a primary care-based approach for postdiagnostic support for people with dementia and their families was appropriate, achievable and/or desirable. Potential benefits of a task-shifted approach were continuity and a more holistic approach to care; familiarity for both patients and staff; and reduction of stigma. Key challenges included the capacity, ability and inclination of primary care to deliver postdiagnostic support for people with dementia and their families. We discovered a number of conceptual challenges to implementing a task-shifted and task-shared approach, including uncertainties around the nature of postdiagnostic support, the definition of primary care and identification of tasks that could be shifted to primary care. Conclusions Our data highlight the concerns of key professional staff around greater involvement of primary care in postdiagnostic support for dementia. Further research is needed to achieve a shared understanding and consensus over what postdiagnostic support means in the context of dementia. We will be undertaking such research in the next phase of our programme

Key components of post-diagnostic support for people with dementia and their carers: A qualitative study

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. </jats:sec