The Financial Cost of Dementia – New Study Examines Care Expenses in Last Five Years of Life

In the last five years of life, total healthcare spending for people with dementia was more than $250,000 per person, some 57{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5} greater than costs associated with death from other diseases, including cancer and heart disease.
The new analysis, which appeared in the Oct. 27 online issue of the Annals of Internal Medicine, estimates that total healthcare spending was $287,000 for those with probable dementia and $183,000 for other Medicare beneficiaries in the study.
The analysis was funded primarily by the National Institute on Aging (NIA), part of the National Institutes of Health. Additional support was provided by the American Federation for Aging Research.
Dr. Amy Kelley of the Icahn School of Medicine at Mount Sinai, with her colleagues, analyzed data from the Health and Retirement Study, a nationally representative, longitudinal study supported by the NIA and the Social Security Administration, as well as linked Medicare and Medicaid records and other data. They calculated the ‘social’ costs of all types of care for 1,702 Medicare fee-for-service beneficiaries age 70 and older who died between 2005 and 2007.
Patients were divided into four groups: those with a high probability of dementia, those with cancer, those with heart disease, and those with another cause of death. The researchers calculated costs from Medicare, Medicaid, private insurance, out-of-pocket, and informal care over the last five years of life. Specific categories of spending included insurance, hospital, physician, medication, nursing home, hired helpers, in-home medical care, and other expenses. The investigators also measured out-of-pocket spending as a proportion of household wealth.
“This complex analysis lays out the significant health care costs to society and individuals in the last five years of life,” said NIA Director Dr. Richard Hodes. “It provides an important picture of the risks that families face, particularly those with dementia and those who may be least able to bear major financial risk. Such insights are critically important as we examine how best to support the aging of the U.S. population.”
While average Medicare expenditures across all four disease categories were similar, almost all other costs were consistently higher for people with dementia. Medicaid expenditures for people who died with dementia averaged $35,346 versus $4,552 for those without dementia. The dementia group had significantly higher enrollment in Medicaid at the start of the five-year study period (21{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5}) than those who died from cancer (8{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5}), heart disease (8{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5}), or other causes (13{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5}). Enrollment in Medicaid during the last five years of life also increased for those with dementia (27{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5}) compared to those with cancer, heart disease, and other causes (12{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5}, 15{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5}, and 15{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5}, respectively).
For families, out-of-pocket spending for those with dementia was $61,522 compared to $34,068 for those without dementia. Informal care costs were estimated to be $83,022 for people with dementia versus $38,272 for those without dementia. In addition, out-of-pocket spending as a proportion of total household wealth five years before death was significantly higher — a median of 32{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5} for dementia and 11{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5} for other diseases. For African-American households, the median out-of-pocket expenditure was 84{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5} of household wealth for those with probable dementia.
The gap in the financial burden between those with and without dementia was larger among those who were unmarried, African-Americans, and those with less than a high-school education. Single women with dementia also incurred more out-of-pocket costs than married women with dementia.