Family Caregiver Burden and Neuropsychiatric Symptoms in Japanese Community-Dwelling People With Alzheimer's Disease: A Cross-Sectional Study Using a Web-Based Questionnaire.

BACKGROUND

Previous studies of community-dwelling people with Alzheimer's disease (AD) have reported an association between the severe neuropsychiatric symptoms (NPS) of dementia and caregiver burden. We explored the current status of family caregiver burden, NPS of dementia, and care service usage in Japanese community-dwelling people with AD.

METHODS

A web-based questionnaire was administered to cohabitant family caregivers of community-dwelling people with AD from 13 to 27 November 2023. Amongst 8108 participants registered in the panel data, 705 family caregivers (age: 19-79 years) were selected. Participants completed the Japanese version of the Neuropsychiatric Inventory-Brief Questionnaire.

RESULTS

Family caregivers (n = 705) had a mean ± standard deviation (SD) age of 54.6 ± 11.5 years, 56.9% were male, and 84.0% cared for a parent or in-law with AD. Patients with AD had a mean ± SD age of 84.2 ± 8.8 years; 26.2% were male, and 90.6% had NPS, including 73.4% with hyperactivity (agitation, disinhibition, irritability and aberrant motor behaviour). Mean ± SD caregiving time per week was higher for caregivers of patients with NPS versus without NPS (24.1 ± 22.1 vs. 17.6 ± 14.0 h). The dissatisfaction with nursing care support services was higher amongst caregivers of patients with NPS vs. without NPS. To manage hyperactivity, 11.3% of caregivers administered medication and 11.5% relocated patients to a calm environment; 16.6% of the caregivers had no way to cope. Amongst caregivers who responded 'administer medication' in response to hyperactivity, 32.1% had care staff or a medical provider come in and administer oral medication and 18.9% took the patient to a medical facility to receive an injection or intravenous treatment.

CONCLUSIONS

Caregiving for AD patients with NPS (vs. without NPS) was associated with longer duration of caregiving, greater usage of nursing care services and dissatisfaction with nursing care support services.