BACKGROUND: To support family caregivers of people with dementia in end-of-life decision making, a family booklet on comfort care has been adapted and adopted by several European jurisdictions since the original publication in Canada in 2005. METHODS: We analyzed and compared the adaptations to the family booklets used in Canada, the Czech Republic, Italy, the Netherlands, the UK and Ireland that were made up to 2021. Qualitative content analysis was used to create a typology of changes to the original booklet. Interviews with the teams that adapted the booklets contributed to methodological triangulation. Further, using an established framework, we assessed whether the contents of the booklets addressed all domains relevant to optimal palliative dementia care. RESULTS: The booklets differed in the types of treatment addressed, in particular tube feeding, euthanasia, and spiritual care. There was also variability in the extent to which medical details were provided, an emphasis on previously expressed wishes in medical decision making, addressing of treatment dilemmas at the end of life, the tone of the messages (indirect or explicit) and the discussion of prognosis (as more or less positive), and the involvement of various healthcare professionals and family caregivers in care. All booklets addressed all domains of palliative dementia care. CONCLUSIONS: We identified core elements in providing information on end-of-life care to family caregivers of people with dementia as related to optimal palliative care in dementia. Additionally, local adaptations and updates are required to account for socio-cultural, clinical, and legal differences which may also change over time. These results may inform development of educational and advance care planning materials for different contexts.

Catherine McAuley School of Nursing and Midwifery University College Cork Cork Ireland

Center for Palliative Care Prague and 3rd Faculty of Medicine Charles University Prague Czech Republic

Department of Family Medicine University of Sherbrooke Sherbrooke QC Canada

Department of Primary and Community Care Radboud university medical center Nijmegen the Netherlands

Department of Public Health and Primary Care Leiden University Medical Center 9600 Hippocratespad 21 2300 RC Leiden the Netherlands

Department of Sciences of Public Health and Pediatrics Turin University Milan Italy

Innovation Value Institute Maynooth University Age Friendly Ireland Maynooth Ireland

School of Aging Studies University of South Florida Tampa FL USA

School of Nursing and Midwifery Queen's University Belfast Belfast Northern Ireland UK

School of Nursing McMaster University Hamilton Ontario Canada

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