Out-of-pocket costs attributable to dementia: A longitudinal analysis

Alzheimer's disease and related dementias (ADRD) affect 5.7 million Americans, and are expensive despite the lack of a cure or even treatments effective in managing the disease. The literature thus far has tended to focus on the costs to Medicare, even though one of the main characteristics of ADRD (the loss of independence and ability to care for oneself) incurs costs not covered by Medicare.

In this paper, we use survey data for 2002-2016 from the Health and Retirement Study to estimate the out-of-pocket costs of ADRD for the patient and their family through the first 8 years after the onset of symptoms, as defined by a standardized 27-point scale of cognitive ability. A two-part model developed by Basu and Manning (2010) allows us to separate the costs attributable to ADRD into two components, one driven by differences in longevity and one driven by differences in utilization.

We identified a cohort of 3619 incident dementia cases, 38.9% were male, and 66.9% were non-Hispanic White. Dementia onset was 77.7 years of age, on average. OOP costs attributable to dementia are $8751 over the first 8 years after the onset. These incremental costs are driven by nursing home expenditures, which are largely uninsured in the US. OOP spending is highest for whites and women.

The financial burden of ADRD is significant, and largely attributable to the lack of wide-spread long-term care insurance.