Survey on family caregiver experiences before and after dementia diagnosis and support-related issues in Japan

This study aimed to elucidate the experiences of family caregivers of people with dementia before and after diagnosis, including regarding medical treatment and support.

We conducted a survey of 198 family caregivers of people with dementia in Japan to assess caregiver experiences regarding medical examination and diagnosis, patient functional status, and support resources.

The mean time from suspicion of dementia to the start of medical evaluation was 15.1 months, and the mean time from the start of medical evaluation to a confirmed diagnosis was 4.7 months. Time to the initial medical visit was significantly longer when the family caregiver was a child or daughter- or son-in-law, when dementia onset was younger, or when the first noticed symptom was forgetfulness (all p < 0.001). Family caregivers received dementia-related information from medical institutions and community comprehensive support centers, but satisfaction with these resources varied. Early diagnosis was valued for clarifying concerns about observed changes (62.1% of respondents), whereas uncertainty until diagnosis caused the greatest anxiety (34.3%), underscoring the need for coordinated support.

Family caregivers of people with dementia reported barriers to timely diagnosis and post-diagnosis support, highlighting the need for improved care pathways, enhanced collaboration between medical institutions and communities, and better access to support resources.