Figure 2.

Thematic schema of people with dementia and carer’s perspectives of ACP and end-of-life care. For people with dementia and their carers, ACP and end-of-life care was characterised by a sense of uncertainty in decision-making. ACP required some to confront emotionally difficult conversations and some carers felt unprepared in the act of adhering to ACP preferences and making end-of-life decisions on behalf of the person with dementia. In addition, a lack of confidence in healthcare settings contributed to carer uncertainty while they navigated existential tensions nearing death. To overcome these challenges, people with dementia and their carers expressed needs and conditions to avoid dehumanising treatment and care.