Josie Dixon

Defining elder mistreatment: reflections on the United Kingdom Study of Abuse and Neglect of Older People

ABSTRACT This paper critically reflects upon policy and research definitions of elder mistreatment in light of the findings of the United Kingdom Study of Abuse and Neglect of Older People that was commissioned by Comic Relief with co-funding from the Department of Health. The study uniquely comprised a national survey and follow-up qualitative research with survey respondents. This paper focuses on the findings of the qualitative component. One focus is the idea of ‘expectation of trust’, with an argument being made that the concept needs clarification for different types of relationships. It is particularly important to distinguish between trust in affective relationships and ‘positions of trust’ (as of paid carers), and to articulate the concept in terms that engage with older peoples experiences and that are meaningful for different relationship categories. The qualitative research also found that ascriptions of neglect and abuse tend to be over-inclusive, in some instances to avoid identifying institutional and service failures. We also question the role and relevance of the use of chronological age in the notion of ‘elder abuse’. Given that ‘abuse’, ‘neglect’ and ‘expectation of trust’ are ill-defined and contested concepts, we recommend that although consistent definitions are important, especially for research into the epidemiology and aetiology of the syndrome and for informed policy discussion, they will unavoidably be provisional and pragmatic.

The economic evidence for advance care planning: Systematic review of evidence:

Background: Advance care planning is a process of discussion and review concerning future care in the event of losing capacity. Aimed at improving the appropriateness and quality of care, it is also often considered a means of making better use of healthcare resources at the end of life. Aim: To review and summarise economic evidence on advance care planning. Design: A systematic review of the academic literature. Data sources: We searched for English language, peer-reviewed journal articles, 1990–2014, using relevant research databases: PubMed, ProQuest, CINAHL Plus with Full Text; EconLit, PsycINFO, SocINDEX with Full Text and International Bibliography of the Social Sciences. Empirical studies using statistical methods in which advance care planning and costs are variables were included. Results: There are no published cost-effectiveness studies. Included studies focus on healthcare savings, usually associated with reduced demand for hospital care. Advance care planning appears to be associated with healthcare savings for some people in some circumstances, such as people living with dementia in the community, people in nursing homes or in areas with high end-of-life care spending. There is no evidence that advance care planning is likely to be more expensive. Conclusion: There is need for clearer articulation of the likely mechanisms by which advance care planning can lead to reduced care costs or improved cost-effectiveness, particularly for people who retain capacity. There is also a need to consider wider costs, including the costs of advance care planning facilitation or interventions and the costs of substitute health, social and informal care. Economic outcomes need to be considered in the context of quality benefits.

Defining the “perpetrator”: abuse, neglect and dignity in care

Purpose – The purpose of this paper is to set out and discuss findings from a developmental study, commissioned by the English Department of Health and the charity, Comic Relief, which was commissioned to clarify definitional issues and recommend ways of operationalising key concepts for a prospective survey of abuse, neglect and loss of dignity in the care of older people in residential care in the United Kingdom (UK).Design/methodology/approach – As well as drawing upon their experience and expertise, the authors conducted a review of the literature, held consultation events with a range of stakeholders and undertook in‐depth interviews with international academics and care home residents.Findings – Existing definitions and descriptions vary widely in form and content, are commonly subjective and imprecise and frequently make reference to abstract concepts which themselves need defining. Many of the concepts are also inherently evaluative, unspecific and open to interpretation. The study considered how,...

Exploring the cost‐effectiveness of a one‐off screen for dementia (for people aged 75 years in England and Wales)

This paper examines the numbers of people with dementia who could be diagnosed and the likely cost‐effectiveness of a one‐off screen for dementia for people aged 75 years in England and Wales.

Improving healthcare for people with dementia in England: good progress but more to do.

The announcement in late 2014 of a £55 payment to general practitioners in England for each patient they diagnose as having dementia was further evidence of the emphasis the government has been putting on this previously neglected condition. Increasing the diagnosis rate was only one aspect of a wide range of initiatives that have been pursued since 2009 when the National Dementia Strategy was published and given even greater prominence under the Prime Minister’s Challenge on Dementia inaugurated in 2012. In 2014, to inform the government’s work in drawing up its vision for further improvements from April 2015, a rapid review was conducted to consider what had been achieved and what future action should be considered. While people with dementia and their relatives clearly require integrated and coordinated health and social care, here we consider only healthcare, focusing on four key aspects: diagnosis; post-diagnostic healthcare; hospital care; and training of healthcare staff.

Advance care planning in England: Is there an association with place of death? Secondary analysis of data from the National Survey of Bereaved People

Objectives To explore whether advance care planning is associated with place of death in England, as well as with sufficiency of support to care for a dying person at home, overall quality of care and pain management. Methods We undertook secondary analysis of data from the National Survey of Bereaved People, 2013, based on a stratified random sample of 49 607 people selected from 150 111 eligible registered deaths (n=22 661, 46% response rate). The indicator of advance care planning used was having expressed a preference for place of death and this being recorded by healthcare staff. Analysis was conducted using logistic regression models. Results Decedents with a recorded preference for place of death had significantly greater odds of dying at home rather than in hospital (OR 6.25; 99% CI 5.56 to 7.14) and in a care home rather than in hospital (OR 2.70; 99% CI 2.33 to 3.13). They also had significantly greater odds of receiving sufficient support to be cared for and to die at home, of receiving ‘outstanding’ or ‘excellent’ care, and of having pain relieved ‘completely, all the time’ while being cared for at home. Conclusions Advance care planning was found to be strongly associated with lower rates of hospital death and a range of quality outcomes. These findings provide support for the emphasis on advance care planning in end of life care policy in England, while also suggesting the need for further research to better understand the mechanisms underlying these relationships.

User Involvement in Designing a Survey of People Directly Employing Care and Support Workers.

User involvement in social care research has generally been the preserve of qualitative methodologies, while user involvement in quantitative research has tended to be limited by the assumed inflexibility of statistical designs and concerns that lay people may require specialist training to engage with quantitative methods. Using the example of the Care and Caring study, a survey about the direct employment of care and support workers in England commissioned and funded by Skills for Care, this paper explores the benefits and difficulties of involving service users in the development and design of survey processes and instruments.

O-33 What do we know about the economic case?

Background Advance care planning is emphasised in UK policy on end of life care, featuring in the end of life care strategies for England, Wales, Scotland and Northern Ireland, and in a range of associated quality markers and targets. Aimed at improving the appropriateness and quality of care, advance care planning is also often considered a means of controlling health spending at the end of life. Aim We aimed to review and summarise economic evidence on advance care planning. Methods A systematic review of academic literature since 1990. Results There are no published cost-effectiveness studies. We identified 18 relevant studies. These vary considerably in terms of intervention, study design, sample, setting and so forth. They are focused primarily on health care savings, usually associated with reduced hospital care. Discussion In this presentation, I discuss the published studies, consider the research challenges facing those who undertake economic evaluation of advance care planning or advance care planning initiatives and offer some thoughts on ways forward. Conclusion It is important to develop further evidence on the economic implications of advance care planning, not just to contain costs but to allocate resources in ways that are efficient and equitable and ensure the most appropriate investment in end of life care services.