How is palliative care understood in the context of dementia? Results from a massive open online course

Background: A palliative approach to the care of people with dementia has been advocated, albeit from an emergent evidencebase. The person-centred philosophy of palliative care resonates with the often lengthy trajectory and heavy symptom burden of thisterminal condition.Aim: To explore participants’ understanding of the concept of palliative care in the context of dementia. The participant populationtook an online course in dementia.Design: The participant population took a massive open online course on ‘Understanding Dementia’ and posted answers to thequestion: ‘palliative care means …’ We extracted these postings and analysed them via the dual methods of topic modelling analysisand thematic analysis.Setting/participants: A total of 1330 participants from three recent iterations of the Understanding Dementia Massive OpenOnline Course consented to their posts being used. Participants included those caring formally or informally for someone living withdementia as well as those with a general interest in dementia.Results: Participants were found to have a general awareness of palliative care, but saw it primarily as terminal care, focused aroundthe event of death and specialist in nature. Comfort was equated with pain management only. Respondents rarely overtly linkedpalliative care to dementia.Conclusions: A general lack of palliative care literacy, particularly with respect to dementia, was demonstrated by participants.Implications for dementia care consumers seeking palliative care and support include recognition of the likely lack of awareness of therelevance of palliative care to dementia. Future research could access online participants more directly about their understandings/experiences of the relationship between palliative care and dementia