The cost of caring for a family member with dementia forces many into tough financial straits.
Late-stage dementia care costs far outstrip the expense associated with other chronic conditions that affect older adults, including heart disease and cancer, according to a new study.
“One of the most striking findings was not just that the magnitude of spending for everybody was quite high, but that it was just astronomical for those families who have someone suffering from Alzheimer’s disease or other types of dementia,” said study author Dr. Amy Kelley, an associate professor of geriatrics and palliative medicine in the Icahn School of Medicine at Mount Sinai.
In the study published online today in the Annals of Internal Medicine, researchers found that the average total cost of caring for a patient with dementia during the final five years of life was $287,038.
This dwarfed the spending for other diseases — $175,136 for heart disease, $173,383 for cancer and $197,286 for other causes.
The study included 1,702 people aged 70 years or older who were on Medicare and died between 2005 and 2010. The data came from a national survey of American adults.
Because dementia is not always listed on the death certificate, researchers used several factors to estimate a person’s probability of having had dementia.
Dementia Costs Growing with Aging Population
Together, this means that in the future more older adults will require long-term care with fewer family members to provide it.
“The cost estimates of this paper are probably going to worsen because of the lower availability of informal care over time and an increasing number of people of advanced old age,” said Michael D. Hurd, PhD, an economist and director of the RAND Center for the Study of Aging, in an interview with Healthline.
Hurd is the author of an earlier study in the New England Journal of Medicine that found that the total cost of dementia care in the United States in 2010 was between $157 billion and $215 billion.
Dementia Care Costs Overburden Certain Groups
While dementia affects all segments of the population, it can be more of a strain for people with fewer financial resources.
“Those families really carried a dramatic burden of cost when you looked at it alongside family wealth,” said Kelley.
In the study, those most affected included African Americans and other racial minorities, unmarried or widowed women, and people with less than a high school education.
Many times, families that can’t afford a nursing home or in-home assistance end up caring for their ailing spouse or parent themselves.
“Families with financial resources have the option to pay or to provide the care themselves,” said Kelley. “Whereas those who may not have the financial resources don’t have that option and so are giving their own time to make up for that difference.”
Providing intensive round-the-clock care for a family member with dementia, though, may also mean making long-term sacrifices — such as not working, quitting school, or cutting back on childcare.
These decisions can have much wider effects on lower income families, especially their children.
“It worries me that there may be implications for the families,” said Kelley, “in terms of impoverishment for the next generation.”
According to the Census Bureau, more than 6 million older adults live in poverty. Many more may be just above the poverty line.
Long-Term Care Insurance Needed
One reason that the total cost for dementia care is higher than for other chronic conditions is that Medicare doesn’t cover many specialized services required by people with dementia.
“Medicare doesn’t spend very much on dementia because Medicare doesn’t pay for long-term stays in nursing homes,” said Hurd, “and it doesn’t pay for long-term in-home care.”
One way to prevent people from being overburdened by the costs of dementia is to handle it the way we do catastrophic events such as fire or earthquakes.
“This is really an insurable situation, where a relatively few number of households have very large costs,” said Hurd. “Just as we insure against houses burning down—it doesn’t happen often, but when it happens your cost is high, so we have insurance against that.”
One challenge of this approach is to make the insurance affordable for people who are already strapped by the cost of dementia care.
But convincing people to buy long-term care insurance can be a challenge. The number of these types of policies sold has been dropping over the past decade.
This study, and others like it, may focus more attention on the problem, which can improve how the country cares for its aging population.
“These are really difficult problems, but I think having some of the data at hand will help us to think through some of the best solutions,” said Kelley, “or avoid making mistakes with policies that have unintended consequences for families.