The quantity and cost of informal caregiving for the elderly with dementia: Estimates from a nationally representative sample

Langa KM, Kabeto M, Herzog AR, Chernew M, Ofstedal MB, Willis R, Wallace R, Mucha L, Straus W, Fendrick AM. The quantity and cost of informal caregiving for the elderly with dementia: Estimates from a nationally representative sample. Paper presented at: RWJ Foundation Clinical Scholars Program Annual Meeting; 1999 Nov 1; Fort Lauderdale, FL.

PURPOSE: As the US population ages, the increasing prevalence of dementia will create a substantial societal burden. Prior studies suggest that the cost associated with family caregiving--not direct medical costs--accounts for most of the total cost of dementia. However, existing estimates of caregiving costs derived from small, non-representative samples are likely biased. Accordingly, our objective was to obtain better estimates of the cost of family caregiving by using a nationally representative sample.METHODS: We used data from the 1993 Asset and Health Dynamics Study (AHEAD), a national longitudinal survey of people aged 70 or older (N = 7,443). Using the validated AHEAD cognitive status measures, all respondents were classified as having: Normal Cognition; Mild Dementia; Moderate Dementia; or Severe Dementia. A two-part regression model was used to estimate the additional weekly hours of family caregiving attributable to dementia, after controlling for sociodemographics (age, gender, race, net worth), health status (chronic health conditions), and level of social support (unmarried living alone, unmarried living with others, married).RESULTS: About 10% of respondents showed evidence of cognitive impairment consistent with dementia. There was a strong positive association between dementia severity and weekly hours of family caregiving (p < .01). Using the average hourly wage of a home health aide in 1997 ($8.30) as the value of a family caregiver's time, the expected yearly caregiving cost per case ranged from $5,800 for Mild Dementia to $17,700 for Severe Dementia. This represents a total yearly cost in the US of about $17 billion for dementia-related informal caregiving.CONCLUSION: Family caregiving time and costs for those with dementia are substantial and increase sharply with the severity of cognitive impairment. Accurate estimates of caregiving costs are, therefore, essential to the validity of future evaluations of interventions that decrease the incidence or slow the progression of dementia.