Talking about Meaning and Loss with Relatives of Persons with Dementia: An Ethnographic Study in a Nursing Home

Advance care planning (ACP) can help prepare for future losses and decisions to be taken. However, relatives of persons with dementia may wait for healthcare professionals to initiate ACP conversations which may not adequately address their individual information needs. To evaluate inducing and enhancing conversations about meaning and loss, we conducted an ethnographic study on nurse-led ACP conversations using a question prompt list (QPL) on six dementia wards of a nursing home in the Netherlands from January to September 2021. Staff received training in using the QPL, with information and sample questions to inspire relatives to ask their questions, in particular on meaning and loss. Thematic analysis was applied to transcribed interviews and memos of observations. Nursing staff in particular was concerned about having to be available to answer questions continuously. Relatives used the study as an opportunity to get in touch with professionals, and they saw the QPL as an acknowledgement of their needs. There was a mismatch in that staff wished to discuss care goals and complete a care plan, but the relatives wanted to (first) address practical matters. A QPL can be helpful to conversations about meaning and loss, but nursing staff need dedicated time and substantial training. Joint agenda setting before the conversation may help resolve a mismatch in the preferred topics and timing of conversations.