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BMC Palliative Care
Published in: BMC Palliative Care 1/2015

Open Access 01-12-2015 | Research article

End of life care interventions for people with dementia in care homes: addressing uncertainty within a framework for service delivery and evaluation

Authors: Claire Goodman, Katherine Froggatt, Sarah Amador, Elspeth Mathie, Andrea Mayrhofer

Published in: BMC Palliative Care | Issue 1/2015

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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.

Conclusion

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.
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Metadata
Title
End of life care interventions for people with dementia in care homes: addressing uncertainty within a framework for service delivery and evaluation
Authors
Claire Goodman
Katherine Froggatt
Sarah Amador
Elspeth Mathie
Andrea Mayrhofer
Publication date
01-12-2015
Publisher
BioMed Central
Published in
BMC Palliative Care / Issue 1/2015
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-015-0040-0

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