Informal costs of dementia care: Estimates from the National Longitudinal Caregiver Study

Objectives. The purpose of the study was to examine on a national level the informal costs of caring for elderly community-dwelling male veterans with dementia by female caregivers and the relationships between informal costs and disease severity. and between informal costs and dementia problem beha viors. Methods. Female primary caregivers were drawn from the first wave (N = 2043 ) of the National Longitudinal Care-giver Study, a survey of informal careg ivers of elderly male veterans diagnosed with probable Alzheimers disease o r vascular dementia. Cost measures include the following four items: value of caregiving time, caregiver's lost income, out-of-pocket expenditures for formal caregiving services, and caregiver's excess health costs. Disease s everity was indexed by the number of impairments in activities of daily liv ing. Patient's problem behaviors were measured using the Behavior Rating Sc ale-Dementia. Results. The annual cost of providing informal care to elderly community-dw elling veterans with dementia was estimated to be $18.385 per patient in 19 98. The larger components of this cost are caregiving time ($6,295) and car egiver's lost earnings ($10,709). All aspects of costs increase with diseas e severity and problem behavior. Most of this cost increase derives from th e increased caregiving time required for the provision of physical care. Discussion. This study provides a comprehensive estimate of the excess cost s that result from providing informal dementia care in the community. Unlik e previous studies, our estimates excluded costs that caregivers would have incurred if they had not been caregivers. Therefore, results reported here reflect only costs due to informal dementia care.