EXECUTIVE SUMMARY
Costs of end-of-life care for dementia patients in the final five years of life greatly exceed those of cancer and heart disease, according to recent research. Some ethical concerns, according to the study, include the following:
- Costs related to daily care are not typically covered by health insurance.
- Many families spend more than their total household assets.
- Stressed caregivers usually need to purchase Adult Day Health services out-of-pocket.
Healthcare and caregiving costs for dementia patients in the final five years of life are greater than for patients with cancer, heart disease and other illnesses, according to a recent study.1
The amount of the difference surprised the researchers, reports lead author Amy Kelley, MD, an associate professor of geriatrics and palliative medicine at Icahn School of Medicine at Mount Sinai in New York City. The researchers reviewed all spending related to healthcare for more than 3,200 Medicare beneficiaries who had died between 2002 and 2008. Some key findings include the following:
- One-quarter of subjects spent more than their baseline total household assets.
- Forty-three percent of subjects spent more than their non-housing assets.
- Those with dementia or Alzheimer’s disease spent the most, averaging more than $66,000, or more than twice that of patients with gastrointestinal disease or cancer, who spent an average of $31,000.
“Households of those with dementia face the greatest burden of costs, on average, particularly with regard to out-of-pocket expenses and the costs of caregiving,” says Kelley.
COSTS AREN'T COVEREC
Many costs related to daily care for patients with dementia are not covered by health insurance. The need for supervision, bathing, and feeding may span several years.
“People with dementia need supervision and assistance with many aspect of daily life in order to be safe and have the best quality of life as possible,” says Kelley. “These needs are progressive, and often continue for many years.”
The study’s findings underscore the importance of individuals and families being aware of the financial risks that older adults face in the last years of life. “It is important for policymakers to know about these costs, so that this information can help shape health and social policy that will best serve our society,” adds Kelley.
Medicare covers medical care, but does not pay for critical components of daily care needs. While supplemental Medicare coverage can defray certain out-of-pocket costs, it does not typically cover caregiving costs.
“We must consider novel ways, through both health and social policy, to provide for the care needs of those with dementia so that older adults get the high-quality care they need and deserve without impoverishing families,” says Kelley.
MISUSE OF RESOURCES
Kenneth Covinsky, MD, MPH, a clinician-researcher at University of California, San Francisco’s Division of Geriatrics, sees troubling social justice issues in the huge financial burdens placed on families.
“Many of the expensive and stressful burdensome concerns for families stem from costs that are not classically considered ‘medical,’” says Covinsky.
This includes the need to provide assistance with activities of daily living such as bathing and dressing, and assistance with tasks such as managing medicines and finances. There is also a need for supervision for persons with dementia because of memory loss, risk for injury, and sometimes agitation.
“At $20 to $25 an hour — a conservative cost for a health aide — these services, over the years they are provided, can quickly eat up all of the resources for a family,” says Covinsky.
Many stressed caregivers could greatly benefit from periods of respite or services like Adult Day Health. “But these services must usually be purchased out of pocket,” says Covinsky. He adds that the health system spends significant amounts of money for medical services that often do much more harm than good in patients with dementia.
“For example, as a clinician, I can spend many hundreds to even thousands of dollars on imaging tests for patients with dementia, which usually are not helpful,” he says. However, clinicians have no ability to order less expensive social services that would be very helpful.
“We actually have huge resources at our disposal, but they are available for all of the wrong things,” says Covinsky.
REFERENCE
- Kelley AS, McGarry K, Gorges R, et al. Burden of health care costs for patients with dementia in the last 5 years of life. Ann Intern Med 2015; 163(10):729-736.
SOURCES
- Kenneth Covinsky, MD, MPH, Division of Geriatrics, University of California, San Francisco. Phone: (415) 221-4810 ext. 4363. Email: [email protected].
- Amy Kelley, MD, Associate Professor of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, New York City, Phone: (212) 241-2631. Email: [email protected].
