BackgroundAdvance care planning (ACP) is a process of communication in which patients and family caregivers discuss preferences for future care with the healthcare team. For persons with dementia, it is crucial to timely engage in ACP. Therefore, we study ACP in dementia using electronic health record data. This study aims to determine how often ACP conversations are recorded, analyze time from dementia diagnosis until the first recorded conversation and time from the first recorded conversation to death, and analyze which factors are associated with the timing of ACP.MethodsElectronic records of 15,493 persons with dementia in Dutch general practice between 2008 and 2016 were linked to national administrative databases. ACP conversations and indicators of health deficits to determine frailty were obtained from electronic records coded with the International Classification of Primary Care. Socio-demographic characteristics were derived from the national population registry managed by Statistics Netherlands. Date of death was derived from the Personal Records Database (2008–2018).ResultsACP was recorded as such as 22 (95% CI, 20–23) first conversations per 1,000 person-years of follow-up. The hazard ratio (HR) for the first conversation increased every year after dementia diagnosis, from 0.01 in the first year to 0.07 in the 7th and 8th year after diagnosis. Median time from a first conversation to death was 2.57 years (95% CI, 2.31–2.82). Migrant status [non-Western vs. Western (HR 0.31, 95% CI, 0.15–0.65)] was significantly associated with a longer time from dementia diagnosis to the first conversation. Being pre-frail (HR 2.06, 95% CI, 1.58–2.69) or frail (HR 1.40, 95% CI, 1.13–1.73) vs. non-frail was significantly associated with a shorter time from dementia diagnosis to the first ACP conversation.ConclusionACP conversations in Dutch general practice were rare for persons with dementia, or was rarely recorded as such. In particular among persons with a non-Western migration background and those who are non-frail, it started long after diagnosis. We advise further research into public health and practical strategies to engage persons with dementia with a non-Western migration background and non-frail persons early in the disease trajectory in ACP.

Background In dementia, gradual cognitive and physical decline imply that control over life is typically lost. Interventions such as advance care planning (ACP), technology, or‐more extreme‐euthanasia can increase control over the end of life. So far, little is known about acceptability of these interventions from the perspective of persons with dementia and others involved. This study examines the cross‐cultural acceptability of four end‐of‐life interventions in dementia which contain an element of striving for control. We describe the development and pilot‐testing of video vignettes that explain interventions in a standardized manner. Method The CONT‐END study Work Package 1 (NTR 7985) employs a cross‐sectional mixed‐methods design to assess acceptability of two types of ACP, technology use at the end of life and euthanasia, in three groups (persons with dementia, their family caregivers and physicians) in six countries (Netherlands, Japan, Israel, USA, Germany, Switzerland). Participants (150 per country) are interviewed about acceptability of the interventions. We will examine different acceptability by group and country and explore potentially associated factors such as coping style. We are pilot testing the acceptability, feasibility and burden of four video vignettes in persons with dementia and their family caregivers in the Netherlands. Result We will demonstrate the video vignettes to explain the interventions. The first interviews indicate that persons with dementia and their family caregivers find the scripts of the video vignettes understandable, acceptable, feasible and not burdensome. They additionally commented on the subject matter in that they felt a current need for ACP on, for example, hospitalization, but would prefer to discuss need for technology and euthanasia later. We will present the pilot results and discuss hypotheses about acceptability of the four interventions in the three groups and six countries. Conclusion The CONT‐END study will provide insight into cross‐cultural acceptability of interventions in dementia care from the perspective of persons with dementia, their family caregivers and physicians. This can help to better align interventions with preferences. The study will also result in a more fundamental understanding as to how and when having control at the end of life in dementia is perceived as beneficial or perhaps harmful.

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