Question Prompt Sheet for Advanced Dementia

Improving communication between family caregivers and health care providers (HCPs) around the progression of dementia in the context of the nursing home is a prerequisite to improving the provision of palliative care in this setting. Yet, many of us simply do not know the questions we could be asking of health care providers around dementia and its progression. We sought to empower family caregivers and those living with dementia, by creating a Question Prompt Sheet that would allow them to identify what questions they might have regarding dementia care in order to prompt discussion between themselves and a health care provider. Based on qualitative interviews with bereaved caregivers of persons with dementia, gerontological and palliative care practitioners, 8 thematic areas
and 31 questions were developed to cover the information respondents deemed critical for families to have conversations with care providers about, in order to understand quality care along the dementia trajectory.

These areas include:
1) Dementia in general;
2) Dementia towards the end of life;
3) Care of persons dying with dementia;
4) My role as a decision-maker;
5) How am I managing;
6) My role as a Caregiver;
7) Relationships with staff; and
8) General questions about life in a long-term care facility.