Care at the End of Life: Design Priorities for People with Dementia

Macdonald, AS; Robinson, L

doi:10.1007/978-3-319-23024-5_47

Care at the End of Life: Design Priorities for People with Dementia

Lookup NU author(s): Professor Dame Louise Robinson

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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.