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

Setting priorities to inform assessment of care homes’ readiness to participate in healthcare innovation: a systematic mapping review and consensus process

© 2020 The Author(s). This is an open access article distributed under the Creative Commons Attribution License which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly citedOrganisational context is known to impact on the successful implementation of healthcare initiatives in care homes. We undertook a systematic mapping review to examine whether researchers have considered organisational context when planning, conducting, and reporting the implementation of healthcare innovations in care homes. Review data were mapped against the Alberta Context Tool, which was designed to assess organizational context in care homes. The review included 56 papers. No studies involved a systematic assessment of organisational context prior to implementation, but many provided post hoc explanations of how organisational context affected the success or otherwise of the innovation. Factors identified to explain a lack of success included poor senior staff engagement, non-alignment with care home culture, limited staff capacity to engage, and low levels of participation from health professionals such as general practitioners (GPs). Thirty-five stakeholders participated in workshops to discuss findings and develop questions for assessing care home readiness to participate in innovations. Ten questions were developed to initiate conversations between innovators and care home staff to support research and implementation. This framework can help researchers initiate discussions about health-related innovation. This will begin to address the gap between implementation theory and practice.Peer reviewe

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

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

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

INTERNATIONAL COLLABORATIONS TO SHAPE RESEARCH

The file attached to this record is the author's final peer reviewed version.The Brazilian care home sector is underdeveloped, and the limited available evidence suggests that care quality falls below international standards. Development of the Brazilian care home sector could be associated with better outcomes for those receiving care, and more efficient use of resources across health and social care. Research has an important role to play. This article summarises research priorities for Brazilian long-term care homes developed as part of an international workshop held in Brazil and the UK, and attended by 71 clinicians and researchers from 6 Brazilian Universities, supported by an international faculty of 8 Brazilian, 8 British, 2 Dutch and 1 Austrian academics. The research priorities identified were: understanding and supporting multidisciplinary working in care homes, with emphasis on describing availability of multidisciplinary teams and how they operate; dignity and sensitivity to cultural needs, with emphasis on collating accounts from Brazilian stakeholders about dignity in care and how it can be delivered; enriching the care home environment with art, music and gardens, with a focus on developing arts in the care home space in a way that is sensitive to Brazilian cultural identity; and benchmarking quality of care, with emphasis on exploring how international quality benchmarking tools can be adapted for use in Brazilian care homes, taking account of new initiatives to include person-centred outcomes as part of benchmarking. Instrumental to research in these priority areas will be establishing care home research capacity in Brazil

Measuring health related quality of life of care home residents, comparison of self-report with staff proxy responses for EQ-5D-5L and HowRu: protocol for assessing proxy reliability in care home outcome testing

Introduction Research into interventions to improve health and wellbeing for older people living in care homes is increasingly common. Health-Related Quality of Life (HRQoL) is frequently used as an outcome measure but collecting both self-reported and proxy HRQoL measures is challenging in this setting. This study will investigate the reliability of UK care home staff as proxy respondents for the EQ-5D-5L and HowRu measures. Methods and Analysis This is a prospective cohort study of a sub-population of care home residents recruited to the larger Proactive Healthcare for Older People in Care Homes (PEACH) study. It will recruit residents ≥ 60 years across 24 care homes and not receiving short stay or respite care. The sample size is 160 participants. Resident and care home staff proxy EQ-5D-5L and HowRu responses will be collected monthly for three months. Weighted kappa statistics and intraclass correlation adjusted for clustering at the care home level will be used to measure agreement between resident and proxy responses. The extent to which staff variables (gender, age group, length of time caring, role, how well they know the resident, length of time working in care homes and in specialist gerontological practice) influence the level of agreement between self-reported and proxy responses will be considered using a multilevel mixed-effect regression model. Ethics and Dissemination The PEACH study protocol was reviewed by the UK Health Research Authority and University of Nottingham Research Ethics Committee and was determined to be a service development project. We will publish this study in a peer-reviewed journal with international readership and disseminate it through relevant national stakeholder networks and specialist societies

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