Background and AimsWhen a person with dementia (PWD) has lost the ability to make treatment decisions, clinicians often rely on family carers to know and articulate these preferences with assumed accuracy. This study used the Life Support Preferences Questionnaire (LSPQ) to explore whether family carers’ choices show agreement with the end of life care preferences of the person with dementia for whom they care and what factors influence this.MethodsA cross-sectional study interviewing 60 dyads (a person with early dementia and preserved capacity and their family carer) each completing a modified LSPQ. We assessed how closely carers’ choices resembled the PWD’s preferences for treatment in three proposed health states: the here and now; severe stroke with coma; terminal cancer. Agreement between the PWD and their family carer responses was assessed using Kappa and Prevalence-Adjusted Bias-Adjusted Kappa (PABAK) statistics. We examined whether carer burden and distress, and relationship quality, influenced agreement.ResultsIn interviews PWD were able to indicate their treatment preferences across all three scenarios. In the here-and-now most wanted antibiotics (98%), fewer cardio-pulmonary resuscitation (CPR) (50%) and tube feeding (47%). In severe stroke and coma antibiotics remained the more preferred treatment (88%), followed by CPR (57%) and tube feeding (30%). In advanced cancer PWD expressed lower preferences for all treatments (antibiotics 68%; CPR 50%; tube feeding 37%). Carers’ choices were similar to the PWDs’ preferences in the here-and-now (71% (k = 0.03; PABAK = 0.4) with less agreement for future hypothetical health states. In severe stroke and coma carers tended wrongly to suggest that the PWD preferred more intervention (antibiotic, 67%; k = -0.022; PABAK = -0.60; CPR, 73%; k = 0.20; PABAK = -0.20, tube feeding, 66%; k = 0.25; PABAK = -0.12). In advanced cancer the agreement between PWD and carers was low (antibiotics; k = -0.03; PABAK = -0.52; CPR, k = -0.07; PABAK = -0.45; tube feeding; k = 0.20; PABAK = -0.22). However, both PWD and carers showed marked uncertainty about their preferences for end of life treatment choices. Relationship quality, carer distress and burden had no influence on agreement.ConclusionsThis study is the first to have used the LSPQ with PWD in the UK to consider treatment options in hypothetical illness scenarios. Key finding are that family carers had a low to moderate agreement with PWD on preferences for end of life treatment. This underscores how planning for care at the end of life is beset with uncertainty, even when the carer and PWD perceive the care-giving/receiving relationship is good. Families affected by dementia may benefit from early and ongoing practical and emotional support to prepare for potential changes and aid decision making in the context of the realities of care towards the end of life.

Further comparison of our findings with expert consensus views highlighted key areas of divergence and agreement. Discordant views concerning perceptions of dementia as a palliative condition, responsibility for future decision-making and the practical co-ordination of end-of-life care may undermine the provision of optimal palliative care. Professionals must explore and recognise the individual perspectives of people with dementia and family carers.

BackgroundPeople with advanced dementia often experience suboptimal end of life care (EoLC) with inadequate pain control, increased hospitalisation, and fewer palliative care interventions compared to those with cancer. Existing policy, guidance and recommendations are based largely on expert opinion because of a shortage of high quality, empirical research. Previous studies have tended to consider the views and experience of particular groups. Whilst providing important evidence, they do not take into account the diversity of perspectives of different stakeholders. The Supporting Excellence in End of life care in Dementia (SEED) programme involved multiple stakeholder groups and an integrative analysis to identify key components of good EoLC for people with dementia and to inform a new intervention.MethodsThe views of national experts, service managers, frontline staff, people with dementia and family carers were explored using a range of qualitative methods (semi-structured interviews, focus groups, discussions and observations of routine care). The large dataset comprises 116 interviews, 12 focus groups and 256 h of observation. Each dataset was initially analysed thematically prior to an integrative analysis, which drew out key themes across stakeholder groups.ResultsThrough the integrative analysis seven key factors required for the delivery of good EoLC for people with dementia were identified: timely planning discussions; recognition of end of life and provision of supportive care; co-ordination of care; effective working relationships with primary care; managing hospitalisation; continuing care after death; and valuing staff and ongoing learning. These factors span the entire illness trajectory from planning at a relatively early stage in the illness to continuing care after death.ConclusionsThis unique study has confirmed the relevance of much of the content of existing end of life frameworks to dementia. It has highlighted seven key areas that are particularly important in dementia care. The data are being used to develop an evidence-based intervention to support professionals to deliver better EoLC in dementia.Electronic supplementary materialThe online version of this article (10.1186/s12877-018-0983-0) contains supplementary material, which is available to authorized users.

Clinical supervision has been an aspect of nursing practice in various forms for several years; however, it remains challenging to ensure its widespread implementation across healthcare organisations. There is an increasingly evident need for formalised support in nurses' busy practice settings, so it is important to improve the quality of clinical supervision in healthcare. This will also assist nurses in providing evidence of their continuing professional development as part of revalidation. This article provides an overview of clinical supervision, outlining its features and functions in healthcare practice. It includes three case studies related to group clinical supervision, discussing how this was implemented in each case and the various methods of group-working that were used.

Objectives To explore current practice and the role of UK care homes and Admiral Nurses in helping people living with dementia and their family carers prepare for end‐of‐life. Methods We conducted an online survey with all UK Admiral Nurses (59% response rate) and a random sample of Gold Standards Framework accredited care homes in England and Wales (38% response rate). We used descriptive statistics to report survey findings. Results While respondents commonly discussed the progressive nature of dementia with people living with dementia and family carers, they less frequently spoke to people with dementia or carers about the nature of dementia as life shortening, terminal, or a disease you can die from. Admiral Nurses highlighted that where service models reduced continuity of care, opportunities for ongoing discussion and developing relationships that supported these discussions were reduced. Admiral Nurses and care homes raised concerns about conversations being left too late, when the person with dementia no longer had capacity to engage. There was a high level of agreement with all European Association of Palliative Care and National Institute for Health and Care Excellence (NICE) statements presented regarding end‐of‐life care planning and discussions. Conclusions Our survey of care homes and Admiral Nurses, combined with findings from our previous survey of UK memory services, increases our understanding of how services help people with dementia and family carers prepare for end‐of‐life. We found fragmentation across the service system, lack of continuity, and tensions regarding when these conversations should be initiated and by whom.