“It’s my life, it’s my choice and I want to say when” vs “A good death is to be on good terms with God”. Comparing the views of people with dementia in the UK and Brazil about a good death: Qualitative study

Background Few studies have directly asked people living with dementia (PLwD) about their views regarding a good death taking into account their diagnosis or compared their perspectives cross‐culturally. We aimed to compare the meaning of a good death for PLwD in Brazil and the UK. Method In this qualitative study, a convenience sample of 32 PLwD (16 each in Brazil and the UK) took part in semi‐structured interviews between Jul 2019 and Aug 2021. A co‐developed topic guide was used in both countries. We assessed all participants for cognitive capacity to give informed consent. Two teams of interdisciplinary researchers independently analysed transcripts for their country using inductive thematic analysis, followed by jointly developing overarching themes on the contrasts and similarities across the two countries. Result We identified 3 main themes: Choice and Control; Spirituality and Religious Beliefs; and Fears and Wishes. Choice and Control permeated all aspects of what a good death meant to PLwD in the UK, but was largely absent from Brazillian narratives. The opposite was true for Spirituality, which was central to the meaning of a good death in Brazil, while far less prominent in the UK, even among religious participants. Fears and Wishes was the only theme showing substantial similarities between the two countries. Exploring relationships between the themes demonstrated that how participants experienced and assuaged Fears was predominantly related to Spirituality in Brazil, and Choice and Control in the UK. Conclusion Designing culturally‐sensitive approaches in palliative dementia care has to take into account how PLwD define both what a good death is and what helps to achieve it. Our findings also raise caution around replicating palliative care initiatives (e.g., on advance care planning) between countries without adapting its goals and means to achieve them so they are culturally meaningful.