The growing population of older adults brings with it an increased prevalence of Alzheimer’s disease and related dementias. Two new papers look at the increasing financial burden on people living with dementia and their caregivers, as well as the programs set up to provide equitable and cost-effective care.
In a first-of-its-kind study, a team of researchers from the Georgia State University School of Public Health, the University of Washington School of Pharmacy and the University of California San Francisco emphasized the financial burden dementia care places on individuals and their families. The researchers analyzed data from 4,500 adults aged 70 or more years to provide comparisons of out-of-pocket expenses by dementia status and care setting.
“Because dementia is such an expensive illness, it really is in a category of its own when we start to think about funding for long-term care,” senior author Jalayne Arias, 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.”
Their findings, published in the JAMDA–The Journal of the American Medical Directors Association, were that residents living with dementia in assisted living communities spent 97% of their monthly income on long-term care. The average monthly out-of-pocket facility payment was $3,090 for assisted living residents with dementia, compared with $2,801 for residents without dementia.
By comparison, nursing home residents spent almost 83% of their monthly income on long-term care. In that setting, residents with dementia paid $3,849 out of pocket, on average, compared with $2,176 spent by residents without dementia.
Regardless of residential status, more than three-fourths of people living with dementia hired someone to help them with activities of daily living, and more than half (56%) of people with living dementia in the study paid an average of $1,000 per month for that help.
“It’s really striking to see that the median individual with dementia is basically putting nearly all of their income toward long-term care,” lead author Jing Li, PhD, assistant professor of health economics at the University of Washington, said in a statement. “We hear about this anecdotally, but to get confirmation of that from the data is really concerning.”
The researchers said that their findings can inform policy at a time when the population of older adults is expected to grow exponentially in the coming years.
“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,” Li and her colleagues concluded.
Improvements at the system level
Meanwhile, a separate study looked at the challenges that dementia poses for the Medicare program due to increasing costs and a fragmented care system.
In a JAMA Internal Medicine opinion piece, researchers reviewed the federal government’s Guiding an Improved Dementia Experience, or GUIDE, model to assess its ability to provide equitable and cost-effective dementia care. They also compared it with previously introduced specialty care payment models to identify opportunities for refining payment innovation in dementia care.
The Center for Medicare & Medicaid Services announced a pilot of the GUIDE model last summer as a way to test an alternative payment for family caregivers while expanding care delivery options to allow people living with dementia to age in their preferred setting.
Some long-term care and other healthcare providers can participate in GUIDE as partner organizations by contracting with another Medicare provider/supplier to meet the program care delivery requirements. Assisted living residents who are Medicare beneficiaries can be part of the model.
Annual spending for Medicare beneficiaries living with dementia is three times higher than spending for people without dementia, according to the paper. Although the GUIDE model “presents an exciting opportunity” to promote payment innovation in dementia care, the authors said that CMS Innovation Center’s previous condition-specific alternative payment models, on which the GUIDE model is built, have had limited success in reducing costs and improving care.
“GUIDE represents a significant opportunity to transform care quality, outcomes, and cost for patients and caregivers,” the authors wrote. “However, given [the center’s] mixed experience with payment reforms, previous demonstration models can help realize GUIDE’s aspirations for beneficiaries with dementia.”
As the population ages, dementia becomes more prevalent and therapy innovations are introduced, they concluded, the GUIDE model is an “important, but limited, step forward.” By incorporating lessons from previous Medicare pilot projects, however, “policymakers can help GUIDE achieve its goals of providing equitable, cost-effective dementia care,” the researchers said.
