Care More Expensive for Dementia Patients and Families in Last Years of Life

The cost of care over the last five years of life for patients with dementia is significantly higher than for patients who die from heart disease, cancer, or other causes, according to a study led by researchers at the Icahn School of Medicine at Mount Sinai, Dartmouth College, and UCLA, and published online in the journal Annals of Internal Medicine. The study was funded by the National Institute on Aging.

In addition to higher total end-of-life costs, the study found that out-of-pocket spending for patients with dementia was 81% higher than for those who died from other causes. The burden of this spending, measured as the proportion of household wealth devoted to out-of-pocket costs, was particularly high for dementia patients who were black, had less than a high school education, or were unmarried or widowed women.

This is the first national study which looks at total costs (patient and family expenses, as well as Medicare and Medicaid expenditures) over the last five years of life for those with dementia in comparison to those without, according to the study authors. It also estimated the cost of family caregiving for patients with dementia, which is defined as a decline in mental ability severe enough to interfere with daily life. Symptoms can include memory loss, as well as declines in language, problem-solving, and other cognitive skills. People with Alzheimer's disease represent the majority of dementia cases.

"Our study shows that all households, regardless of disease, face substantial financial risks during the last years of life; however, households of those with dementia face an even greater burden of costs, particularly with regard to out-of-pocket expenses and the costs of caregiving," says Amy Kelley, MD, an associate professor of geriatrics and palliative medicine at Icahn School of Medicine at Mount Sinai and lead author of the study. "Many costs related to daily care for patients with dementia are not covered by health insurance, and these care needs—from supervision, to bathing and feeding—may span several years.

While Medicare provides nearly universal coverage for US adults over age 65, it does not cover health-related expenses most valuable to those with chronic diseases or a life-limiting illness, such as homecare services, equipment, and nonrehabilitative nursing home care. People living with dementia often face many years of progressive functional decline and require long-term, supportive care.

Researchers analyzed data from 1,702 Medicare beneficiaries, aged 70 years or older, who died between 2005 and 2010. The group was then subdivided into four main categories: individuals with high probability of dementia, and individuals who died of heart disease, cancer, or other causes. Findings indicated the average total cost for deceased patients with dementia was $287,038 in the last five years of life. This was significantly higher than for those who died of heart disease ($175,136), cancer ($173,383), or other causes ($197,286).

"The families of patients with dementia have more expenses than other families, and the financial burden is greatest among families that may be least able to manage it," says Kelley. "The discussion of health care reform must include the significant uninsured care needs of older adults with dementia and examine ways to mitigate the financial risk currently faced by Medicare beneficiaries."

The study was supported by the National Institute on Aging. The study's data was supplied by the Health and Retirement Study (HRS), a national sample of US adults age 50 linked to Medicare claims. The HRS includes detailed information on out-of-pocket spending and total Medicare spending, as well as information about insurance coverage, socioeconomic status, health and cognitive status, and cause of death.

Collaborators of the study include researchers from the Geriatric Research Education and Clinical Centers at the James J Peters VA Medical Center, the UCLA department of economics, Dartmouth College department of economics, and The Dartmouth Institute for Health Policy and Clinical Practice at the Dartmouth Medical School.

Source: Mount Sinai Medical Center