One in every four older Americans with dementia or mild cognitive impairment lives alone, putting them at a higher risk. In a study published in JAMA Network Open, researchers led by UC San Francisco concluded that the United States health system is poorly equipped to serve patients living solo with cognitive decline, whose numbers are predicted to swell as the population ages.
First author Elena Portacolone said for these patients, living alone is a social determinant of health with an impact as profound as poverty, racism and low education. Researchers interviewed 76 health care providers, including physicians, nurses, social workers, case workers, home care aides and others. They raised concerns about patients missing medical appointments, failing to respond to follow-up phone calls from the doctor’s office and forgetting why appointments were made, leaving them vulnerable to falling off the radar.
Portacolone said these findings are an indictment of our healthcare system, which fails to provide subsidised home care aides for all but the lowest-income patients. She said, “In the United States, an estimated 79 per cent of people with cognitive decline have an income that is not low enough to make them eligible for Medicaid subsidised home care aides in long-term care.”
While Medicaid is available to adults over 65, subsidised aides are generally only provided after acute episodes, like hospitalizations, for fixed hours and for limited durations, Portacolone said. “Most patients need to pay out-of-pocket, and since cognitive impairment can last for decades, it is unsustainable for most people. Aides available via Medicaid are very poorly paid and usually receive limited training in caring for older adults with cognitive impairment,” she added.
Subsidised home care aides plentiful in Europe, Japan, Canada
In contrast, subsidised home care aides are generally available to a significantly larger percentage of their counterparts living in parts of Europe, Japan and Canada, said Portacolone, citing a 2021 review of 13 countries, of which she was the senior author.
The study’s findings illustrate substantial deficiencies in how our health system provides for people with dementia, said senior author Kenneth E. Covinsky, MD, MPH, of the UCSF Division of Geriatrics. “In an era when Medicare is going to spend millions of dollars for newly approved drugs with very marginal benefits, we need to remember that Medicare and other payers refuse to pay far less money to provide necessary supports for vulnerable people with dementia.”
The researchers advocate for a system in which robust supports are made available by funding from expanded Medicare and Medicaid. This will become increasingly critical, said Portacolone, “because effective treatments to reverse the course of cognitive impairment are unavailable, childlessness and divorce are common, and older adults are projected to live longer and often alone.”