title: CoMPASs: IOn programme (Care Of Memory Problems in Advanced Stages of dementia: Improving Our Knowledge): protocol for a mixed methods study.
abstract: BACKGROUND
  Approximately 700 000 people in the UK have dementia, rising to 1.2 million by 2050; one-third of people aged over 65 will die with dementia. Good end-of-life care is often neglected, and detailed UK-based research on symptom burden and needs is lacking. Our project examines these issues from multiple perspectives using a rigorous and innovative design, collecting data which will inform the development of pragmatic interventions to improve care.
  
  
  METHODS
  To define in detail symptom burden, service provision and factors affecting care pathways we shall use mixed methods: prospective cohort studies of people with advanced dementia and their carers; workshops and interactive interviews with health professionals and carers, and a workshop with people with early stage dementia. Interim analyses of cohort data will inform new scenarios for workshops and interviews. Final analysis will include cohort demographics, the symptom burden and health service use over the follow-up period. We shall explore the level and nature of unmet needs, describing how comfort and quality of life change over time and differences between those living in care homes and those remaining in their own homes. Data from workshops and interviews will be analysed for thematic content assisted by textual grouping software. Findings will inform the development of a complex intervention in the next phase of the research programme.
  
  
  BACKGROUND
  Ethical approval was granted by National Health Service ethical committees for studies involving people with dementia and carers (REC refs. 12/EE/0003; 12/LO/0346), and by university ethics committee for work with healthcare professionals (REC ref. 3578/001). We shall present our findings at conferences, and in peer-reviewed journals, prepare detailed reports for organisations involved with end-of-life care and dementia, publicising results on the Marie Curie website. A summary of the research will be provided to participants if requested.
authors.affiliation: Marie Curie Palliative Care Research Unit, UCL Mental Health Sciences Unit,  University College London Medical School, London,  UK.
authors.forename: Louise
authors.initials: L
authors.lastname: Jones
authors.forename: Jane
authors.initials: J
authors.lastname: Harrington
authors.forename: Sharon
authors.initials: S
authors.lastname: Scott
authors.forename: Sarah
authors.initials: S
authors.lastname: Davis
authors.forename: Kathryn
authors.initials: K
authors.lastname: Lord
authors.forename: Victoria
authors.initials: V
authors.lastname: Vickerstaff
authors.forename: Jeff
authors.initials: J
authors.lastname: Round
authors.forename: Bridget
authors.initials: B
authors.lastname: Candy
authors.forename: Elizabeth L
authors.initials: EL
authors.lastname: Sampson