An estimated 1 in 4 older Americans with dementia or mild cognitive impairment lives alone and is susceptible to practices like unsafe driving, wandering outside the house, mixing up medications and failing to attend medical appointments.

In a study publishing in JAMA Network Open on Aug. 18, 2023, researchers led by UC San Francisco concluded that america health system is poorly equipped to serve patients living solo with cognitive decline, a gaggle whose numbers are predicted to swell because the population ages.

For these patients, living alone is a social determinant of health with an impact as profound as poverty, racism and low education, said first writer Elena Portacolone, PhD, MBA, MPH, of the UCSF Institute for Health and Aging and the Philip R. Lee Institute for Health Policy Studies.

On this qualitative study, researchers interviewed 76 health care providers, including physicians, nurses, social employees, case employees, home care aides and others. Participants worked in memory clinics, home care services and social services and other places in California, Michigan and Texas

The providers raised concerns about patients missing medical appointments, failing to reply to follow-up phone calls from the doctor’s office and forgetting why appointments were made, leaving them vulnerable to falling off the radar. “We do not necessarily have the staff to actually try to succeed in out to them,” said a physician in a single interview.

Discharging a patient is like ‘sending a child out to play on freeway’

Some patients couldn’t assist their doctor with missing information on their chart, leaving the providers uncertain in regards to the pace of their patient’s decline. Many had no names listed as emergency contacts, “not a member of the family, not even a friend to depend on in case of a crisis,” in response to a case manager.

These patients were in danger for untreated medical conditions, self-neglect, malnutrition and falls, in response to the providers. A house service coordinator also noted that calls to Adult Protective Services were sometimes dismissed until a patient’s situation became very serious.

One consequence of the shaky infrastructure supporting these patients was that they weren’t identified until they were sent to a hospital following a crisis, like a fall or response to medication mismanagement. Some were discharged and not using a support system in place. In a single case, a patient was sent home with a taxi voucher, a situation that a psychiatrist likened to “sending a child out to play on the freeway.”

These findings are an indictment of our health care system, which fails to supply subsidized home care aides for all however the lowest-income patients, said Portacolone.

“In america, an estimated 79% of individuals with cognitive decline have an income that will not be low enough to make them eligible for Medicaid subsidized home care aides in long-term care,” she said, adding that the brink for an individual living alone in California is $20,121 per 12 months.

While Medicare is accessible to adults over 65, subsidized aides are generally only provided after acute episodes, like hospitalizations, for fixed hours and for limited durations, she said.

“Most patients must pay out-of-pocket and since cognitive impairment can last for a long time, it’s unsustainable for most individuals. Aides which can be available via Medicaid are very poorly paid and frequently receive limited training in caring for older adults with cognitive impairment,” she added.

Subsidized home care aides plentiful in Europe, Japan, Canada

In contrast, subsidized 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 writer.

The study’s findings illustrate substantial deficiencies in how our health system provides for individuals with dementia, said senior writer Kenneth E. Covinsky, MD, MPH, of the UCSF Division of Geriatrics. “In an era when Medicare goes to spend hundreds of thousands of dollars for newly approved drugs with very marginal advantages, we want to do not forget that Medicare and other payers refuse to pay far less money to supply mandatory supports for vulnerable individuals with dementia.”

The researchers advocate for a system by which robust supports are made available by funding from an expanded Medicare and Medicaid. It will change into 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 sometimes alone.”

Source:

University of California – San Francisco

Journal reference:

Portacolone, E., et al. (2023). Perceptions of the Role of Living Alone in Providing Services to Patients With Cognitive Impairment. JAMA Network Open. doi.org/10.1001/jamanetworkopen.2023.29913.