Adding informal, unpaid care to the equation as much as doubled the estimated total national costs.
Dementia has an economic impact on the United States as least as large as that of heart disease and cancer, according to new estimates from researchers at the University of Michigan Health System and the nonprofit RAND Corporation.
The direct costs of dementia care were estimated at $109 billion in 2010. This includes formal costs for nursing homes, Medicare, and out-of-pocket expenses.
That compares to direct health expenses of $102 billion for heart disease and $77 billion for cancer in the same year.
Adding informal, unpaid care to the equation as much as doubled the estimated total national costs for dementia care, up to nearly $215 billion. Full costs per case of dementia in 2010 were $41,000 to $56,000, according to the findings.
The researchers used a subsample of 856 persons in the Health and Retirement Study, a nationally representative longitudinal study of older adults.
“The true cost of dementia is often understated due to the lack of recognition of the daily care costs that are imposed on families, that is, informal care for daily needs,” coauthor Kenneth Langa, MD, PhD, professor of internal medicine at the University of Michigan Medical School, told ConsultantLive.
The majority (about 80%) of the costs associated with dementia in the study are a result of the long-term daily care and supervision provided by families and nursing homes, often for many years, Dr Langa noted.
He described dementia as a “slow-motion disaster” for patients and families.
“There are often no or only few acute emergencies that arise as an older person’s cognitive impairment slowly worsens, as is the typical time-course for dementia,” he said. “The slow decline often leads families to put off the important decision making that needs to occur regarding long-term care and defining the older person’s preferences for care at the end of life.”
He added, “When dementia does finally become severe enough that a person can no longer be cared for with the resources in place, it can be disastrous if no planning has taken place.”
The study did not measure the emotional costs of dementia, “which are bound to be enormous,” noted Michael Hurd, PhD, lead author of the study and director of the RAND Center for the Study of Aging. “We need to step up efforts to identify ways to effectively treat and prevent this devastating disease. It inflicts a large and growing cost to patients, families, and public programs.”
Primary care physicians should be especially attuned to the increasing daily care needs of older adults with dementia and the burden it can impose on family caregivers, said Dr Langa. “Encouraging patients and families to state their preferences for care, either to each other or formally in advance directives, should be an important priority.”
“Dementia will be increasingly prevalent in the next 30 years as the number of older adults increases significantly,” he added. “We need to ensure that dementia patients and their families receive high quality care.”
The findings were published on April 4 in The New England Journal of Medicine.