A study led by UC San Francisco and published in JAMA Network Open on August 18, 2023, reveals that around one in four elderly Americans with dementia or mild cognitive impairment live alone, making them vulnerable to risky behaviors like dangerous driving, wandering, medication mix-ups, and missed appointments. This research highlights the inadequacies of the American health system in effectively serving these patients, whose numbers are expected to increase due to aging demographics. Elena Portacolone, the study’s lead author, emphasizes that living alone for these individuals has a significant impact on their health, similar to factors like poverty, racism, and low education.
The qualitative study involved interviews with 76 healthcare providers, including physicians, nurses, social workers, case workers, and home care aides. These professionals were based in various healthcare settings across California, Michigan, and Texas. The study uncovered several concerning issues:
- Missed Appointments and Communication: Patients with cognitive decline who live alone often miss medical appointments, fail to respond to follow-up calls, and forget the purpose of appointments, leading to them falling through the healthcare system’s cracks. Limited resources hinder healthcare providers from effectively reaching out to these patients.
- Lack of Information and Support: Some patients are unable to provide important information to their healthcare providers, leaving these professionals uncertain about the progression of the patients’ conditions. Many patients lack emergency contacts, leaving them isolated and at risk of untreated medical issues, self-neglect, malnutrition, and falls.
- Delayed Identification and Crisis Response: The study found that some patients are only identified as needing support after experiencing crises, such as falls or medication mismanagement. Discharged patients sometimes lack proper support systems, leading to further risks and challenges.
- Challenges with Subsidized Home Care Aides: The study reveals that subsidized home care aides are typically provided to only the lowest-income patients, often after acute episodes like hospitalizations. In contrast, other countries like parts of Europe, Japan, and Canada offer subsidized home care aides to a broader percentage of their elderly population.
“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,” she attached.
Portacolone criticizes the American healthcare system for its failure to provide adequate support for elderly individuals with cognitive decline living alone. She points out that while Medicare is available for adults over 65, subsidized home care aides are usually only offered after acute incidents, and even then, the support is limited in hours and duration. She contrasts this with other countries where a larger percentage of their counterparts receive subsidized home care aides.
The study’s findings point to significant shortcomings in the way our healthcare system caters to individuals with dementia. Kenneth E. Covinsky, MD, MPH, who is affiliated with 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 an 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.”
The study’s findings underscore the urgent need for improved healthcare services and support systems for elderly Americans with cognitive decline who live alone. The deficiencies identified in the healthcare system highlight the need for comprehensive reforms to address the unique challenges these vulnerable individuals face and ensure their well-being and safety.
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