From diagnosis to daily care: The impact of early informational support on the burden of family caregiving

People with dementia and their families receive a flood of wide-ranging information at diagnosis. However, it remains unclear which types of information are helpful to caregivers during the care period that follows. In collaboration with dementia medical centers and certified dementia support doctors, we distributed questionnaires to family caregivers of individuals diagnosed with dementia. A total of 159 self-administered questionnaires were retrieved. Caregiver burden was measured using the short version of the Japanese Zarit Caregiving Inventory (J-ZBI_8). Regression analyses were performed to examine how nine types of informational support provided at diagnosis were associated with caregiver burden while controlling for care recipient and caregiver characteristics and the caregiving context. Only dementia-related information and information from local medical institutions were significantly associated with a lower caregiver burden. These basic forms of information are fundamental yet crucial to enable family caregivers to navigate the subsequent stages of care.