Understanding Why People With Dementia Attend the Emergency Department Towards the End of Life
Aims
To understand and conceptualise the determinants of ED attendance by people with dementia towards the end of life.
Objectives
- To identify predictors of ED attendance and frequency of re-attendance by people with dementia in the last year of life
- To explore the experiences and perceptions of people with dementia and their caregivers about health and social care service use, including the ED
- To integrate findings to develop a conceptual framework of ED attendance by people with dementia towards the end of life.
Methods
A convergent parallel mixed-methods design, comprising quantitative and qualitative strands of equal priority. The quantitative strand will be a population-based retrospective cohort study of ED attendances in the last year of life, using linked routine collected data. The qualitative strand will be an interview study with people with dementia and their carers into ED attendance and other health and social care service use. Findings will be integrated by juxtaposing results of each strand using a multi-method meta-data matrix, divided by predisposing, enabling, and reinforcing factors.
Effective start/end date: 01/01/2020 - 01/01/2023
Workstream 1: A population-based retrospective cohort study of ED attendances in the last year of life, using linked routine collected data from Hospital Episode Statistics and Civil Registration of Deaths. The aim of this retrospective observational study is to identify patterns and predictors of ED attendance among people with dementia in their last year of life. The objectives are: 1) to examine the frequency re-attendance by people with dementia in the last year of life; 2) to ascertain the reasons for ED attendance among people with dementia in the last year of life; and 3) to identify the predictors of ED attendance and re-attendance by people with dementia in the last year of life.
Workstream 2: An exploratory interview study of people with dementia and their carers, exploring emergency department attendance and the influence of health and social care access by people with dementia. The aim is to explore the perceived needs and experiences of health and social care for people with dementia and their carers who have or have not attended the ED since dementia diagnosis. Objectives are to explore experiences and perceptions of: 1) the extent to which health and social care services, including the ED, meet individual need and expectation; 2) the availability and proximity of health and social care services, including the ED; and 3) the financial and personal costs of using health and social care services, including the ED.
Effective start/end date: 01/01/2020 - 01/01/2023
Workstream 1: A population-based retrospective cohort study of ED attendances in the last year of life, using linked routine collected data from Hospital Episode Statistics and Civil Registration of Deaths. The aim of this retrospective observational study is to identify patterns and predictors of ED attendance among people with dementia in their last year of life. The objectives are: 1) to examine the frequency re-attendance by people with dementia in the last year of life; 2) to ascertain the reasons for ED attendance among people with dementia in the last year of life; and 3) to identify the predictors of ED attendance and re-attendance by people with dementia in the last year of life.
Workstream 2: An exploratory interview study of people with dementia and their carers, exploring emergency department attendance and the influence of health and social care access by people with dementia. The aim is to explore the perceived needs and experiences of health and social care for people with dementia and their carers who have or have not attended the ED since dementia diagnosis. Objectives are to explore experiences and perceptions of: 1) the extent to which health and social care services, including the ED, meet individual need and expectation; 2) the availability and proximity of health and social care services, including the ED; and 3) the financial and personal costs of using health and social care services, including the ED.
Principal Investigator
Dag Aarsland
Professor of Old Age Psychiatry
Investigators
Katherine Sleeman
Laing Galazka Chair in Palliative Care, Honorary Consultant in Palliative Medicine
Catherine Evans
Professor of Palliative Care