title: End of life care interventions for people with dementia in care homes: addressing uncertainty within a framework for service delivery and evaluation.
abstract: BACKGROUND
  There has been an increase in research on improving end of life (EoL) care for older people with dementia in care homes. Findings consistently demonstrate improvements in practitioner confidence and knowledge, but comparisons are either with usual care or not made. This paper draws on findings from three studies to develop a framework for understanding the essential dimensions of end of life care delivery in long-term care settings for people with dementia.
  
  
  METHODS
  The data from three studies on EoL care in care homes: (i) EVIDEM EoL, (ii) EPOCH, and (iii) TTT EoL were used to inform the development of the framework. All used mixed method designs and two had an intervention designed to improve how care home staff provided end of life care. The EVIDEM EoL and EPOCH studies tracked the care of older people in care homes over a period of 12 months. The TTT study collected resource use data of care home residents for three months, and surveyed decedents' notes for ten months,
  
  
  RESULTS
  Across the three studies, 29 care homes, 528 residents, 205 care home staff, and 44 visiting health care professionals participated. Analysis of showed that end of life interventions for people with dementia were characterised by uncertainty in three key areas; what treatment is the 'right' treatment, who should do what and when, and in which setting EoL care should be delivered and by whom? These uncertainties are conceptualised as Treatment uncertainty, Relational uncertainty and Service uncertainty. This paper proposes an emergent framework to inform the development and evaluation of EoL care interventions in care homes.
  
  
  CONCLUSIONS
  For people with dementia living and dying in care homes, EoL interventions need to provide strategies that can accommodate or "hold" the inevitable and often unresolvable uncertainties of providing and receiving care in these settings.
authors.affiliation: Centre for Research in Primary and Community Care University of Hertfordshire, Hatfield, AL10 9AB, UK. c.goodman@herts.ac.uk.
authors.forename: Claire
authors.initials: C
authors.lastname: Goodman
authors.affiliation: International Observatory on End of Life Care University of Lancaster, Lancaster, UK. k.froggatt@lancaster.ac.uk.
authors.forename: Katherine
authors.initials: K
authors.lastname: Froggatt
authors.affiliation: Marie Curie Palliative Care Research Department University College London, London, UK. s.amador@ucl.ac.uk.
authors.forename: Sarah
authors.initials: S
authors.lastname: Amador
authors.affiliation: Centre for Research in Primary and Community Care University of Hertfordshire, Hatfield, UK. e.j.mathie@herts.ac.uk.
authors.forename: Elspeth
authors.initials: E
authors.lastname: Mathie
authors.affiliation: Centre for Research in Primary and Community Care University of Hertfordshire, Hatfield, UK. a.mayrhofer@herts.ac.uk.
authors.forename: Andrea
authors.initials: A
authors.lastname: Mayrhofer
mesh_terms: D003704:Dementia / Q000628:therapy*; D006801:Humans; D012866:Skilled Nursing Facilities / Q000706:statistics & numerical data*; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000379:methods*; D035501:Uncertainty