Older adults living with dementia, and their families, often face “catastrophic” out-of-pocket payments for assisted living and other types of long-term care, necessitating alternative financing and integrated care solutions to reduce long-term care’s financial challenges for them, according to the results of a new study.
A team of researchers from the University of Washington, the University of California, San Francisco, and Georgia State University analyzed data from 4,500 adults aged 70 or more years in the 2019 National Health and Aging Trends Study to compare out-of-pocket expenses by dementia status and care setting.
Their findings, published recently in the JAMDA, the Journal of Post-Acute and Long-Term Care Medicine, show that although assisted living residents living with dementia paid a larger percentage of their monthly income on their care, the average monthly out of pocket payment for that care was less for an assisted living resident compared with a nursing home resident.
According to the study, an adult with dementia living in a residential facility, such as an assisted living community, spent 97% of his or her monthly income on long-term care. By comparison, nursing home residents living with dementia spent almost 83% of their monthly income on long-term care.
But the researchers also reported that the average monthly out-of-pocket payment for a resident with dementia living in residential care, such as assisted living, was $3,090, compared with $3,849 for nursing home residents.
By comparison, residents without dementia paid $2,801 per month, on average, for assisted living care and $2,176 monthly for nursing home care. The investigators also found that more than 90% of residents of residential care facilities paid out of pocket to the community, regardless of their dementia status.
More than three-fourths of people with dementia also used helpers, regardless of where they lived, and more than half (55.9%) of them paid a monthly average of more than $1,000 out of pocket for help with activities of daily living.
“Because dementia is such an expensive illness, it really is in a category of its own when we start to think about funding our long-term care,” senior author Jalayne J. Aria, JD, GSU associate professor, said in a release. “Our study shows that if you compare people with dementia to their age-matched counterparts, they experience costs that are untenable to manage.”
“It’s really striking to see that the median individual with dementia is basically putting nearly all of their income toward long-term care,” Jing Li, PhD, lead author and University of Washington assistant professor, said in a release. “We hear about this anecdotally, but to get confirmation of that form the data is really concerning.”
The authors concluded that policies that provide financial assistance are needed to address long-term care-related financial burdens experienced by older adults and their families, especially related to older adults with dementia. Continued reliance on resident/patient or family out-of-pocket payments to fund long-term care, they said, exacerbates inequities in access to those services.
Existing public and private long-term care insurance and policies, they added, are unlikely to be adequate in protecting those individuals from long-term care-related financial risk. The authors said they support alternative financing and integrated care solutions to financially support long-term care needs, address care inequities and reduce financial burdens for older adults and their families.
“Given the costs associated with residential care facilities like nursing homes and assisted living centers, increasing funding for home- and community-based care is a promising way to reduce the financial burden that long-term care places on older adults, particularly those with dementia,” they noted.
