Thanks to a five-year, $8.2 million federal grant from the National Institute on Aging, leading researchers at the University of Southern California (USC) are building a dementia cost model that will generate comprehensive, nationwide, annual estimates of dementia costs that could benefit patients and their families.
A strong understanding of the costs of the illness can help families living with dementia plan their budgets and support needs, understand treatment and care options, and inform health policy development.
“While we currently have specific cost estimates, we found that these estimates don't include most of the costs to people with dementia, their families and society,” said Julie Zissimopoulos, a professor at the USC Price School of Public Policy and the USC Schaefer Center for Health Policy and Economics, who led the project. “Everything about this disease impacts families' wallets.”
The costs of dementia can be devastating for families, draining savings and forcing caregivers to quit work. Dementia imposes a huge economic burden across the United States. The Alzheimer's Association projects that medical and long-term care costs for people with Alzheimer's and other dementias could total $360 billion this year and soar to nearly $1 trillion by 2050.
“Other impacts may include reduced retirement savings for caregivers or limited ability to send their children to college,” said project adviser Maria Aranda, a professor at the Suzanne Dworak Peck School of Social Work at the University of Southern California, who studies the impact of Alzheimer's disease on Black and Latino families. “The result is intergenerational inequity and economic vulnerability for families of people with dementia.”
The tool, called a “dynamic microsimulation model,” incorporates multiple data sets, including data from the Centers for Medicare and Medicaid Services and national surveys of older Americans, such as the Health and Retirement Study. The model calculates costs across different stages of the disease, including costs incurred by dementia patients, caregivers, and caregivers, as well as payers. Additionally, the model's estimates adjust for prevention and treatment innovations.
The research team is co-led by Dana Goldman, who served as dean of the USC Price School for the past four years and will become director of the new USC Schaefer Institute for Public Policy and Government Services on July 1. The A-Team also includes experts from:
Keck School of Medicine of USC; Alfred E. Mann School of Medicine of USC; Leonard Davis School of Gerontology of USC; Suzanne Dworak-Peck School of Social Work of USC; and Viterbi School of Engineering of USC.
“When we consider the societal costs of Alzheimer's — its impact on families, caregivers and others — we quickly see that it's not just a disease, it's a societal epidemic,” Goldman said. “This project will further highlight the importance of finding treatments to prevent this catastrophe.”
Experts advising the project include patients and caregivers, and other advisers include representatives from the Alzheimer's Association, University of California, Los Angeles, University of Pennsylvania and the Los Angeles County Department of Public Health.
USC Viterbi scientists plan to design interfaces to ensure the publicly available tools are user-friendly.
In addition to providing up-to-date and comprehensive annual estimates, researchers will be able to calculate the societal and economic impact of, for example, a drug that treats neuropsychiatric symptoms associated with advanced dementia and keeps patients out of the hospital or emergency room. The tool might even be able to measure cost savings from a new drug that may have a modest effect of delaying the cost of 24-hour care by two months.
“Requenvi is a great example. It's a new FDA-approved treatment for early-stage Alzheimer's disease. We have data from clinical trials to inform patients and healthcare providers about safety and effectiveness,” Zissimopoulos said. “But these data don't provide information about other outcomes that patients and their families care about, such as the impact on quality of life that may result from slowing cognitive decline. And we want to know not just over the 18 months of a clinical trial, but over 10 and 20 years.”
“The infrastructure we're building will allow us to better understand what value is and who it is valuable to.”
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University of Southern California
