Existing measures are missing some of the costs to society associated with Alzheimer’s disease and related dementias, information that will be critical to policymakers as they make decisions related to treatment and research funding and other issues, according to a study published in the Journal of Alzheimer’s Disease.

Current estimates of Alzheimer’s and other dementias include direct costs (the cost of healthcare and paid-for social care) and indirect costs (such as informal care provided by family members, and reduced productivity from people being unable to work), according to the international team of experts who conducted the analysis. These estimates, however, they said, frequently fail to include “hidden” costs such as:

  • The cost of healthcare for family caregivers who develop health conditions — such as anxiety, depression or hypertension — as a result of caring for someone with dementia.
  • Cutbacks in spending, or the use of savings, by families to support loved ones living with dementia.
  • Reduced quality of life for people living with dementia and family caregivers.
  • Costs incurred in the years before a diagnosis of impairment or dementia is made. Such costs could include the cost of diagnostic tests to rule out other conditions as symptoms start to manifest, costs to manage other health conditions that may be worsened by the person’s dementia, and declining quality of life.

“Our analysis strongly supports that current estimates fail to recognize the true costs of the diseases, such as Alzheimer’s, that cause dementia. Some studies have estimated that out-of-pocket expenses for people with dementia are up to one-third of their household wealth in the final five years of their life and that caregivers have healthcare costs that are twice as high as non-caregivers,” said Alireza Atri, M.D., Ph.D., senior and corresponding author of the study and director of the Banner Sun Health Research Institute in Sun City, AZ. “We also found evidence that costs begin rising up to 10 years prior to diagnosis. We need to better measure and factor all these into future societal cost estimates.”

Currently, dementia costs the U.S. economy an estimated $290 billion a year and the global economy an estimated $1 trillion, according to the authors. Without a standard measure to capture the “hidden” costs, however, it is more difficult to assess whether treatments and policies are improving people’s lives, they wrote.

A coordinated international effort involving local and national governments and organizations, as well as industry groups, associations and the World Health Organization, is needed to address the issue, Atri said.

“We must come together to develop and implement comprehensive national dementia prevention, treatment, care, workforce education and training, and research action plans that better measure societal impact; to promote private-public partnerships; and to focus priorities, policies and plans to combat Alzheimer’s disease and related dementias,” he said.