Communication and support needs of dementia care partners at end-of-life

BackgroundCare partners of people with dementia have many responsibilities, including providing care at end-of-life (EOL). Discussions about EOL are often delayed until late in the course of disease, if they occur at all.ObjectiveLearn about the communication and support that care partners need regarding EOL.MethodsWe conducted 27 interviews with care partners and analyzed these data using the Information, Motivation, and Behavioral Skills Model. We analyzed interview transcripts to deductively develop a codebook, and then collapsed codes until inductive themes emerged which aligned under the Information, Motivation, and Behavioral Skills Model.ResultsWe found that clinician-initiated discussions and a positive perception of the clinician-care partner relationship contributed to care partners' willingness to communicate. Care partners usually waited for clinicians to bring up EOL topics and felt apprehensive about these discussions, which hampered their ability to communicate effectively about EOL. Information-seeking was constrained by uncertainty about timing, lack of private discussion opportunities, and perceived limited personalization. Despite recognizing their support needs, care partners found few opportunities to discuss EOL due to the clinician's focus on immediate clinical concerns.ConclusionsEarly clinician-initiated communication and relationship building could improve EOL care. In particular, developing opportunities for private discussions between care partners and clinicians may reduce apprehension and facilitate meaningful EOL conversations.