End-of-Life Dementia Costs More Than Heart Disease, Cancer

Pauline Anderson

October 30, 2015

It is well known that dementia is a costly illness in many ways, but a new report suggests it's significantly more expensive than most other disorders in the last years of life.

The study, which investigated social costs and financial risks faced by Medicare beneficiaries during the 5 years before death, found that healthcare spending for dementia topped $250,000 per person, about 57% more than costs associated with death from other diseases, including cancer and heart disease.

The new analysis, carried out by Amy S. Kelley, MD, Icahn School of Medicine at Mount Sinai, New York, New York, and colleagues, was published online October 27 in the Annals of Internal Medicine.

"This complex analysis lays out the significant health care costs to society and individuals" at the end of life, said Richard J. Hodes, MD, director, National Institute on Aging (NIA), which funded the analysis, in a press release.

"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 US population."

Core Interviews

Researchers analyzed data from the Health and Retirement Study (HRS), a nationally representative longitudinal cohort study of US adults older than 50 years funded by the NIA and the Social Security Administration.

Every 2 years in the HRS, serial or "core" interviews are carried out that include detailed questions on demographic characteristics, social and functional characteristics, and medical and caregiver information. The HRS links patient survey data to individual Medicare claims records and the National Death Index.

The researchers sampled all HRS decedents by a postdeath proxy interview between 2006 and 2010 (n=4086) and combined these data with each decedent's interview data from the previous 5 years.

To examine Medicare spending during the last 5 years, researchers included only persons living in the United States who died at age 70 years or older within the study period (January 1, 2005, to December 31, 2010), who had linked claims data, appropriate fee-for-service coverage, and core interviews during the 5 years preceding death.

The final sample consisted of 1702 persons. Individuals were assigned to the dementia group if the probability of dementia at the last available assessment exceeded 50%, which reflects an algorithm based on multiple cognitive measures.

"We and others use this probabilistic approach because so few decedents are coded as having died of dementia — most are identified on death records as having died of something else," write the authors.

The probable dementia group included 555 participants. The mean probability of dementia in this group was 87%, and 59% of them had probabilities of dementia greater than 90%.

In addition to dementia, investigators looked at three other primary causes of death: cancer (n = 279), heart disease (n = 431), and other conditions (n = 437).

Compared with these other groups, the dementia group was older at the time of death, was less likely to be married, and had lower mean household wealth. As well, Medicaid enrollment was significantly higher in the dementia group.

The researchers examined how healthcare spending varied across these four disease groups. They calculated costs from Medicare, Medicaid, private insurance, out-of-pocket, and informal care over the last 5 years of life.

Out-of-Pocket Expenditures

Out-of-pocket expenditures were measured every 2 years in the HRS interview and in a postdeath interview with family. Specific categories of spending include insurance, hospital, physician, medication, nursing home, hired helpers, in-home medical care, and other expenses.

Investigators considered patterns of spending associated with sociodemographic factors in two ways: by examining spending across diseases and subgroups based on race, marital status, and education and by considering spending measures by disease (dementia and nondementia groups) and adjusting these measures for age, sex race, education, marital status, and common coexisting conditions.

They adjusted all expenditures for inflation (2010 US dollars).

The mean adjusted total healthcare spending in the last 5 years of life was $287,000 for those with probable dementia and $183,000 for those in other disease groups.

While average Medicare expenditures across all four disease categories were similar ($86,430 for dementia and $98,326 for nondementia groups), average Medicaid, out-of-pocket, and informal costs were higher for the dementia group than the nondementia group.

For example, out-of-pocket spending for those with dementia was $61,522 compared with $34,068 for those without dementia. Informal care costs were estimated to be $83,022 for people with dementia vs $38,272 for those without dementia.

In addition, out-of-pocket spending as a proportion of total household wealth 5 years before death was significantly higher: a median of 32% for dementia and 11% for other diseases. In African-American households, the median out-of-pocket expenditure was 84% of household wealth for those with probable dementia.

The gap in the out-of-pocket financial burden between those with and without dementia was also more pronounced for those with lower education. Unmarried women with dementia spent 58% of their wealth on out-of-pocket health-related costs, whereas those without dementia spent 21% and those with a surviving spouse spent 10% or less, regardless of dementia status.

Costs of informal care varied considerably across sociodemographic subgroups. Average informal care for decedents with dementia ($83,022) was more than double the corresponding care for those without dementia ($38,272).

Greater Burden

"This gap in the financial burden between persons at high and low risk for dementia was larger in the groups most vulnerable to financial risk: those who were unmarried, were black, and had less than a high school education," write the authors. "Of note, the dementia group already had markedly less wealth and a greater percentage was enrolled in Medicaid, a proportion that only grew over time."

Medicare does not cover health-related expenses most valuable to those with chronic diseases or life-threatening illnesses, such as homecare services, equipment and neurorehabilitative nursing home care. The need for these uninsured services is greatest among those with dementia, say the authors.

"Our findings clearly show that the predominant determinant of health care costs for the dementia group are nursing home and informal care costs, and these burdens are largely borne by individuals and families, particularly among vulnerable subgroups."

These groups, they write, "are the least able to cope," which further contributes to the poverty of surviving spouses and a continued intergenerational cycle of poverty.

"Ongoing discussion of Medicare policy and health care reform should acknowledge the considerable financial risk faced by aging Medicare beneficiaries and examine reforms that might mitigate these risks," the authors conclude.

The analysis was funded primarily by the NIA, part of the National Institutes of Health (NIH). Additional support was provided by the American Federation for Aging Research. Dr Kelley has disclosed no relevant financial relationships. One of the authors — Jonathan Skinner — received a grant from the NIH during the conduct of the study and has invested in Dorsata, a startup software company developing physician decision support programs.

Ann Intern Med. Published October 27, 2015. Abstract


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