Sen. Tom Harkin (D-IA)

Devastating out-of-pocket costs for long-term dementia care are likely to hit a relatively small proportion of families in the coming years, but many families will pay minor costs, an expert told a Senate committee Wednesday.

Medicaid and long-term care insurance pay for the majority of nursing home care related to dementia under the current system, which does protect “most households,” according to written testimony from Michael D. Hurd, of the RAND Office of External Affairs. He submitted the testimony to a health subcommittee of the Senate Appropriations Committee and spoke to members at the hearing on Alzheimer’s costs.

“New, ongoing research” indicates that a “minority of families” does in fact risk financial devastation due to dementia costs, specifically for long-stay nursing home care, according to Hurd. At the same time, many families are likely to incur modest expenses related to dementia care.

“This situation in which many families incur minor costs but a few incur very large costs ought to call for an insurance solution, one in which the costs of long-term care could be spread across the entire population rather than being concentrated on the unlucky few,” Hurd wrote.

Low uptake of current long-term care insurance policies shows that these products are not working, Hurd told the senators. RAND is preparing a report on long-term care costs for dementia to help guide policymakers as they work to improve the status quo, Hurd noted.

The hearing attracted extra media attention because actor Seth Rogen also participated, in his role as a spokesperson and fundraiser for the National Alzheimer’s Association. He described his own family’s experience with the disease.