Development and evaluation of a question prompt list for dementia in a later phase of life

People  with an incurable disease often do not know what to expect in the future as the disease progresses. Therefore, it can be difficult to ask the right questions to health care professionals. In particular with dementia, talking about a later phase of life involves complexities. Also, palliative care in dementia is not well-known yet.

Question prompt lists offer examples of questions to inspire asking those that are relevant to the person at the particular time. This may help patients and relatives prepare for conversations about the end of life and choices around end-of-life care.  Health care professionals will also benefit from more structured discussions.

We developed a question prompt list with examples of questions while also providing information about dementia and care around the end of life. The goals of the question prompt list are to help consider preferences in a structured way, to formulate questions, to promote discussion between patient and relatives and with health care professions, and to facilitate decision making about care and treatment.

The question prompt list has been developed with relatives, bereaved family caregivers and experts.  General practitioners and elderly care physicians in the Netherlands are invited to evaluate a draft of the question prompt list. For this, they receive the question prompt list along with a questionnaire. Acceptability is the