An estimated 25% of older Americans with cognitive decline live alone, which results in a variety of risks and challenges. A recent study shows that the U.S. health care system is ill-prepared to support these people, whose needs contrast with better care in countries such as Europe, Japan and Canada. Patients often forget appointments, mix up medications, and have no one to contact in an emergency.
About 25% of older Americans with dementia or mild cognitive impairment live alone, putting them at risk for unsafe driving, getting lost, medication mix-ups and missed doctor appointments.
A recent study led by UCSF researchers published in the journal JAMA Network Open shows that the U.S. health care system is not adequately prepared to meet the unique needs of older adults with cognitive impairments who live alone. This group is expected to grow as the overall population ages.
For these patients, living alone is a social determinant of health as profound as poverty, racism and low educational attainment, said first author Elena Portacolone, PhD, MBA, MPH, of the UCSF Institute for Health and Aging and the Philip R. Lee Institute for Health Policy.
In this qualitative study, researchers interviewed 76 health care providers, including doctors, nurses, social workers, caseworkers, home care aides and others. Participants worked in memory clinics, home care services, social service agencies and other locations in California, Michigan and Texas.
Healthcare providers are concerned about issues such as patients missing medical appointments, not returning follow-up calls to doctor's offices, and forgetting the reason for an appointment because these issues can easily cause them to lose focus. "We don't necessarily have enough staff to actually contact them," one doctor said in an interview.
Discharging patients is like "sending a child to play on the highway"
Some patients are unable to provide doctors with missing information from their medical records, leaving health care providers unable to determine how quickly patients are declining. One case manager said many patients have no names on their emergency contact lists and "don't have a single family member or even a friend to lean on in a crisis."
According to providers, these patients are at risk for untreated medical conditions, self-neglect, malnutrition and falls. A family services coordinator also noted that sometimes calls to Adult Protective Services are ignored until a patient's condition becomes very serious.
One consequence of unstable infrastructure to support these patients is that they are not detected until they are admitted to the hospital after a crisis, such as a fall or misadministration of medications. Some patients are discharged without a support system. In one case, a patient was sent home with only a taxi voucher, a situation one psychiatrist likened to "sending a child out to play on the highway."
"These findings are an indictment of our health care system for its failure to provide subsidized home care aides to all but the lowest-income patients," Portacolón said. "An estimated 79 percent of patients with cognitive decline in the United States do not earn enough to qualify for Medicaid-subsidized home care aides in long-term care," Portacolón said, adding that California's threshold for deeming someone living alone is $20,121 per year.
She said that while Medicaid is available to adults over 65, subsidized nursing services are generally only provided for a fixed time and for a limited duration after an acute episode, such as a hospitalization.
"Most patients are required to pay out-of-pocket, and cognitive impairment can last for decades, which is prohibitive for most people," she added. "Aides available through Medicaid are poorly paid and often have limited training in caring for older adults with cognitive impairment."
Subsidized home care aides are abundant in Europe, Japan and Canada
By contrast, the share of subsidized home care aides is much higher in parts of Europe, Japan and Canada, Portacolone cited a 2021 study of 13 countries, of which she was senior author.
The findings suggest significant shortcomings in our health care system's ability to provide care for people with dementia, said senior author Kenneth E. Covinsky, MD, of the Division of Geriatric Medicine at the University of California, San Francisco. "In an era when Medicare will spend millions on newly approved drugs with minimal benefit, we need to remember that Medicare and other payers refuse to pay far less to provide necessary support to vulnerable dementia patients."
Researchers advocate for a system funded by expanded Medicare and Medicaid to provide strong supports for patients. This will become increasingly important "because there are currently no effective treatments to reverse the progression of cognitive impairment, childlessness and divorce are common, and older adults are expected to live longer, often alone," Portacolón said.