Title: Understanding the factors that influence why people with dementia make transitions from the community to acute hospital care settings in the last months of life: a retrospective cohort study (Project U-Care)
Funder: Department of Health and Social Care

Abstract: Background Transition from community settings into hospital is common for people with severe dementia, but can have profoundly deleterious physical and cognitive consequences. The concept of burdensome transitions' has been introduced to describe potentially harmful transitions between care settings for people with advanced dementia. These are defined as (i) multiple hospitalisations in the last 90 days of life, or (ii) a transition in the last 3 days, or (iii) a lack of continuity between care homes before and after hospitalisation. In the United Kingdom little is known about the frequency of burdensome transitions among people with dementia or the reasons for these, hampering development of effective health policies. Aim To determine the relative individual, illness-related, and environmental factors associated with burdensome transitions for people with dementia in their last year of life, to inform effective public health policies to improve care towards the end of life for this growing population. Methods Study design Retrospective cohort study, with data linkage. Study population People with dementia, aged over 60, who died between 01/01/2001 and 31/12/2013. The population will be identified from the South London and Maudsley NHS Foundation Trust (SLAM) Biomedical Research Centre (BRC) Case Register. Data sources The study will use two levels of routinely collected data: a) Individual level data obtained from three sources: the SLAM BRC Case Register, with individual linkage to Office for National Statistics (ONS) mortality data, and Hospital Episodes Statistics (HES) activity for the 12 months preceding death. b) Area-level data including: information on service provision derived from various sources; socio-economic position derived using the Index of Multiple Deprivation (2010); geographic area mapping to determine proximity of patients' place of residence to healthcare facilities. Data analysis Primary outcome - The primary outcome will be burdensome transitions. Explanatory variables Explanatory variables will be based on a theoretical model informed by the work of Gomes and Higginson (2006). This will include individual, illness-related and environmental factors. Descriptive analysis The number of healthcare transitions during the last year of life (including burdensome transitions, out of hours transitions), hospital bed days, Emergency Department admissions, place of residence, and site of death will be described for the total population. Statistical modelling - Statistical modelling will be used to understand how individual-level and area-level factors interact to contribute to burdensome transitions. Poisson regression will be used to determine Proportion Ratios (PR) for burdensome transitions, which will be modelled as a binary variable. Economic analysis - NHS costs for the last year of life will be described for the whole population using estimates from Healthcare Resource Group codes derived from HES and NHS reference costs. The relationship between burdensome transitions and costs will be explored through univariate and multivariate linear regression modelling. The dependent variable will be total NHS costs in the last 90 days, modelled as a continuous variable. Generalised linear models will be used if the data are skewed. All analyses will be done using Stata. Benefits to patients and NHS Dementia is the commonest cause of death for women in the United Kingdom, and improving care for people with dementia as they approach the end of their life is a national priority. Transitions between health care settings for people with dementia are common towards the end of life, but are associated with morbidity and mortality. Reducing the use of hospital-based care in advanced dementia also has potential economic benefits. This study will provide high quality evidence on the factors associated with transition between healthcare settings for people with dementia, and the associated costs, to inform health policies that aim to improve care for this growing population.

Lay abstract: This research aims to understand why people with dementia move between healthcare settings (termed a transition') in the months preceding their deaths. We will use the results of the research to inform National health policies, so that healthcare transitions may become less likely for people with dementia. Dementia is a global health concern. There are currently over 35 million people worldwide living with dementia. Dementia is the commonest cause of death for women in the United Kingdom, and the number of people living with and dying from dementia is predicted to increase as our population ages. People with dementia often transfer from one healthcare setting to another, for example from a care home into hospital. This is called a transition. Transitions can be distressing for people with dementia and their families, and can lead to deterioration in their physical or mental health, for example through the development of pressure sores and worsening confusion. This is particularly the case when they are close to death. The concept of burdensome transitions' has been introduced to describe potentially harmful transitions between care settings for people with advanced dementia. These are defined as (i) multiple hospitalisations in the last 90 days of life, or (ii) a transition in the last 3 days, or (iii) a lack of continuity between care homes before and after hospitalisation. Over the past decade there has been a strong policy focus in the United Kingdom on where people die as an indication of the quality of their end of life care. This is because most people want to be at home, close to their family and friends, and away from the acute hospital setting. England has one of the highest rates of hospital death in people with dementia in Europe (40%), though there has been an encouraging shift away from hospital deaths in recent years. However, where people die does not tell us about the quality of care received in the weeks and months preceding death. In the United States, while hospital deaths are decreasing among people with dementia, the number of burdensome transitions they make has increased. In the United Kingdom little is known about how frequently people with dementia experience burdensome transitions between healthcare settings, or the reasons for these transitions. Understanding this would guide development of effective health policies. This study aims to meet this gap in our knowledge. This study will use data that has already been collected as part of hospital and administrative systems to explore the factors associated with burdensome transitions for people with dementia in the last months of life. These factors will be classified according to whether they are related to the individual themselves (e.g. age, ethnicity), to the illness (e.g. mental function, physical function), or to the environment (e.g. local services available). We will use statistical techniques to understand the relative importance of these factors, and build a model of how they interact. The results will be used to inform health policies, in order to reduce burdensome transitions for people with dementia close to the end of life. Patient and Public Involvement has shaped the research question for this study, and will be integral to the ongoing project management, interpretation of results, and dissemination of findings particularly to non-expert groups. We will disseminate our results according to the target audience. For the clinical and academic community we will publish our work in peer-reviewed journals, and present it at conferences. A dissemination workshop will be held for service providers, clinicians, and academics. We will work with the King's College London Policy Institute to target dissemination to policy makers, including production of policy briefs which succinctly explain the key findings in the National context. Plain English summaries which explain the most important results in a format accessible to non-experts will be disseminated via our institute website and social media platforms such as Twitter. Two public events held in Dying Matters Awareness Week will take place at the Cicely Saunders Institute, to which the general public, charity leaders, clinicians and academics, will be invited.

Research activity codes: 7.3 MANAGEMENT AND DECISION MAKING;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: NEUROLOGICAL