Abstract
This paper discusses pre-design stage research concerned with supporting excellence in end-of-life care (EoLC) for people with dementia (PwD). The discontinuation and replacement of previous with new EoLC guidance provides the opportunity for improving care package materials (CPMs) to support EoLC. Current CPMs tend largely to address governance, recording of treatment and consent for audit purposes. This research identified the need for CPMs to better reflect the complexities, coordination and communication needs between the patient (and those important to them) carers and physicians, and to anticipate discussions, scenarios and consequences of decision-making between all parties involved along a patient’s uncertain trajectory at EoL: dementia adds another level of challenge. Findings from evaluating existing CPMs and surveying of new technological developments are discussed in this context.
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Acknowledgements
For the background material for this paper, the authors acknowledge the guidance of the SEED (Supporting Excellence in End of life care in Dementia) team members in work streams 1 and 2. This paper presents independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research programme (Grant Reference Number RP-PG-0611-20005). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.
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Macdonald, A.S., Robinson, L. (2016). Care at the End of Life: Design Priorities for People with Dementia. In: Chen, YW., Torro, C., Tanaka, S., Howlett, R., C. Jain, L. (eds) Innovation in Medicine and Healthcare 2015. Smart Innovation, Systems and Technologies, vol 45. Springer, Cham. https://doi.org/10.1007/978-3-319-23024-5_47
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DOI: https://doi.org/10.1007/978-3-319-23024-5_47
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