• Dementia
• Death
• Palliative Care
• Personhood

‘An beochaoineadh’ (Un byo-kh-ee-na), lament for a person who has gone away,1 from ‘beo’, alive and ‘caoineadh’, lament song. This Irish language word describes a lament for a person who remains alive but is lost to us in a permanent, painful way. The concept endorses profound loss and anguish but rejects death as a needful basis for the loss and does not diminish the personhood of the lost loved one. In solemnly elevating bereavement without death, the word may offer a helpful construct in dementia grief models.2 The ‘beochaoineadh’ authorises, respects and even demands recognition of grief in the absence of death.

Disease-modifying drugs for dementia are here and it is an electrifying time to work in dementia care. Much of the research and public discourse on dementia in recent times focuses on early and mid-stage illness. Yet even in this age of disease-modifying drugs, people will die with and from neurodegenerative illness. There have been many essential and affirming representations of living well with dementia. There remains comparatively little space in popular culture for living with advanced dementia, which can leave carers and healthcare workers feeling their experiences have been flattened or erased and …