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

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 behaviors.

Female primary caregivers were drawn from the first wave (N = 2043) of the National Longitudinal Caregiver Study, a survey of informal caregivers of elderly male veterans diagnosed with probable Alzheimer's disease or 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 severity was indexed by the number of impairments in activities of daily living. Patient's problem behaviors were measured using the Behavior Rating Scale-Dementia.

The annual cost of providing informal care to elderly community-dwelling veterans with dementia was estimated to be $18,385 per patient in 1998. The larger components of this cost are caregiving time ($6,295) and caregiver's lost earnings ($10,709). All aspects of costs increase with disease severity and problem behavior. Most of this cost increase derives from the increased caregiving time required for the provision of physical care.

This study provides a comprehensive estimate of the excess costs that result from providing informal dementia care in the community. Unlike 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.