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Significant Care Access Disparities Found Among Older Patients With Cognitive Decline Living Alone
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A recent finding from a qualitative study raises concerns about patient safety in healthcare because the system in the US is not well equipped to address the unique needs of older adults living alone with cognitive decline.
Elena Portacolone, PhD, MBA, MPH
In a recent qualitative study on professional’s perspectives published in JAMA Network Open, findings showed that specific factors made care access for older adults living alone with cognitive impairment more challenging compared with their counterparts who were living with others. These findings suggest that living arrangements are a social determinant of health in patients with cognitive impairment as those living alone were harder to serve and are more likely to experience gaps in care.1,2
Professionals listed specific factors and increased concerns that made serving older adults living alone with cognitive impairment more challenging than their counterparts living with others, including isolation and a crisis-dominated health care system. The participants also noted issues with essential health care and social services, such as policies limiting access and use to public home-care aides, as part of the reasons for this unmet need among older adults living alone with cognitive impairment.
“For these patients, living alone is a social determinant of health with an impact as profound as poverty, racism and low education,” lead author Elena Portacolone, PhD, MBA, MPH, associate professor of sociology in the Institute for Health & Aging and a Pepper Center Scholar at the Division of Geriatric Medicine at UCSF, said a statement.1 “These findings are an indictment of our health care system, which fails to provide subsidized home care aides for all but the lowest-income patients. In the United States, an estimated 79% of people with cognitive decline have an income that is not low enough to make them eligible for Medicaid subsidized home care aides in long-term care.”
Researchers interviewed 76 clinicians, social workers, and other professionals (n = 20) from Michigan, California, and Texas between February 8, 2021, and June 8, 2022. The median age was 49.3 (SD, 12.7) years old, with 59 (77.6%) women, 8 (11%) Black or African American participants, and 35 (46%) White. The participants were compared with patients with cognitive decline who were given care and lived alone versus counterparts living with others. Then, researchers conducted an inductive content analysis when analyzing the interview transcripts.
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“While Medicare is available to adults over 65, subsidized aides are generally only provided after acute episodes, like hospitalizations, for fixed hours and for limited durations,” Portacolone said in a statement.1 “Most patients need to pay out-of-pocket and since cognitive impairment can last for decades, it is unsustainable for most people. Aides that are available via Medicaid are very poorly paid and usually receive limited training in caring for older adults with cognitive impairment."
The clinicians reported heavy concerns about their patients missing medical appointments, not responding to follow-up phone calls from the clinic, and forgetting the reason for creating the appointments. Additionally, some patients could not provide missing information on their chart for their clinician, which led the providers to be uncertain about the progression of their patient’s cognitive decline. Overall, these patients were at a higher risk for not receiving treatment, experiencing self-neglect, having malnutrition, and having falls.
“The study’s findings illustrate substantial deficiencies in how our health system provides for people with dementia,” senior author Kenneth E. Covinsky, MD, MPH, professor of medicine and clinician-researcher in the UCSF Division of Geriatrics said in a statement.1 “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.”
Another participant, a house service coordinator, noted in an interview that calls to Adult Protective Services were occasionally dismissed until a patient's medical condition became a serious threat. One result noted by professionals about the current medical care infrastructure supporting these patients was they were not identified until they were sent to a hospital after a crisis such as a fall or reaction to medication mismanagement. Some of the patients were even discharged from the hospital without a support system in place, according to the responses in the interviews.
The researchers from the original qualitative study advocated for a healthcare system where there is a strong support for patients made available by expanded Medicare and Medicaid. “This will become increasingly critical,” Portacolone said in a statement, “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.”1
