Developing Country-Specific Question Prompt Lists About Dementia Palliative Care for Family Caregivers

Abstract

We aimed to develop question prompt lists for family caregivers of nursing home residents with advanced dementia to augment advance care planning conversations. In the context of a joint European-Canadian study, we used standardized nominal group methods to create country-specific lists of questions. (Bereaved) family caregivers of persons with dementia read an information booklet about end-of-life care for people with dementia, and generated questions to ask healthcare professionals. They also marked the most important questions from pre-selected questions from other lists. In the Netherlands, 20 participants contributed to a question prompt list of 24 questions that gravitated towards questions about terminating life and the responsibilities of physicians and family involved in decision making. In Canada, 4 participants came up with a question prompt list of 15 questions, related mostly to staff-family communication, with some the same as selected in the Netherlands. Data from the other countries will be presented too.