Background Advance care planning (ACP) is an increasing priority for people with dementia during the COVID-19 pandemic. This study aimed to investigate characteristics of home-dwelling persons with dementia and families that are related to ACP implementation.

Methods An internet-based questionnaire survey was conducted with Japanese family caregivers of home-dwelling persons with dementia in June 2021. Registered members of a Japan-based survey company were recruited; inclusion criteria were being aged 40 years or older and having been a primary, non-professional caregiver of a family member with dementia. Respondents rated their level of agreement with six statements regarding advance-care-planning-related concerns. Respondents also evaluated the level of depressive symptoms in persons with dementia using the Neuropsychiatric Inventory (NPI).

Results A total of 379 family caregivers participated in the survey. A total of 155 persons with dementia (40.9%) had initiated ACP, of which 88 (56.8%) had care professionals involved in ACP conversation. Persons with professional involvement showed significantly more severe depressive symptoms and lower family-caregiver concern compared to those who did not initiate ACP.

Conclusion Presence of psychological distress such as depressive symptoms may have been a trigger to initiate ACP among people with dementia. Optimal and proactive ACP approaches need to be developed to address family concern regarding conducting ACP.