Summary: A startling study uncovers a critical deficiency in US healthcare infrastructure: approximately 1 in 4 older Americans with dementia or cognitive impairment live alone, facing increasing dangers such as unsafe driving, medication accidents, and neglected medical appointments. This problem looms large, especially against the backdrop of an aging demographic that is set to grow exponentially.
The current health system appears ill-equipped to serve the vulnerable elderly, especially when compared to systems in Europe, Japan and Canada which provide comprehensive support for this group. As the US grapples with these findings, the importance of upgrading the system becomes all too clear.
- An estimated 1 in 4 older Americans with cognitive decline live alone, vulnerable to a variety of risks including missed medical appointments and medication errors.
- America’s health system is struggling to support this demographic, leaving many people without proper care and intervention until they are facing a serious crisis.
- Although countries such as Europe, Japan, and Canada offer more extensive subsidized home care assistance, most of America does not, resulting in out-of-pocket expenses and inadequate support for these patients.
An estimated 1 in 4 older Americans who have dementia or mild cognitive impairment live alone and are at risk for practices such as unsafe driving, loitering outside the home, mixing drugs, and missing medical appointments.
In a study published in The Open JAMA Network on August 18, 2023, researchers led by UC San Francisco concluded that the United States healthcare system is ill-equipped to serve patients living alone with cognitive decline, a group whose numbers are expected to swell as the population ages.
For these patients, living alone was a social determinant of health with as much impact as poverty, racism, and low education, said first author Elena Portacolone, PhD, MBA, MPH, of the UCSF Institute for Health and Aging and Philip R. Lee Institute for Health Policy Studies.
In this qualitative study, researchers interviewed 76 health care providers, including doctors, nurses, social workers, case workers, home care helpers and others. Participants worked in memory clinics, home care and social services and elsewhere in California, Michigan and Texas
Healthcare providers share their concerns about patients who miss medical appointments, fail to respond to follow-up phone calls from doctors’ offices, and forget why appointments were made, leaving them vulnerable to going unnoticed. “We don’t necessarily have staff actually trying to reach them,” one doctor said in an interview.
Sending patients home is like ‘telling kids to play on the freeway’
Some patients are unable to assist their doctors if there is missing information on their charts, so healthcare providers are unsure about the rate of decline of their patients. Many of them did not list names as emergency contacts, “no family members, not even friends to rely on in a crisis,” according to the case manager.
These patients are at risk for untreated medical conditions, self-neglect, malnutrition and falls, according to healthcare providers. A home services coordinator also noted that calls to Adult Protective Services are sometimes stopped until a patient’s situation becomes very serious.
One consequence of the weak infrastructure supporting these patients is that they are not identified until they are sent to the hospital following a crisis, such as a fall or reaction to medication mismanagement.
Some were sent home without a support system. In one case, a patient was sent home with a taxi voucher, a situation one psychiatrist likened to “putting a child to play on the freeway.”
These findings are an indictment of our healthcare system, which failed to provide subsidized home care assistance to all but low-income patients, said Portacolone.
“In the United States, an estimated 79% of people with cognitive impairment have an income that is not low enough to qualify them for Medicaid subsidized home care assistance in long-term care,” he said, adding that the threshold for someone living alone in California is $20,121 per year.
Although Medicare is available for adults over 65, subsidized assistance is generally only provided after an acute episode, such as hospitalization, for certain hours and a limited period, he said.
“Most patients have to pay for it out of pocket and because cognitive impairment can last for decades it is unsustainable for most people. The helpers available through Medicaid are very low paid and usually receive limited training in caring for elderly people with cognitive impairments,” he added.
Subsidized home care assistance is abundant in Europe, Japan, Canada
In contrast, subsidized home care assistance is generally available to a much larger percentage of their counterparts living in parts of Europe, Japan and Canada, said Portacolone, citing a 2021 review of 13 countries, of which he is senior author. .
The findings of this study illustrate major deficiencies in the way our health system provides services to people with dementia, said senior author Kenneth E. Covinsky, MD, MPH, of the UCSF Division of Geriatrics.
“In an era when Medicare will spend millions of dollars on newly approved drugs with very little benefit, we need to remember that Medicare and other payers refuse to pay far less money to provide the necessary support for vulnerable people with dementia.”
The researchers advocate a system in which strong support is provided through expanded Medicare and Medicaid funding. This will become even more important, says Portacolone, “as effective treatments to reverse cognitive impairment are not available, childlessness and divorce are common, and older people are expected to live longer and often alone.”
About this aging and cognitive decline research news
Author: Suzanne Leigh
Contact: Suzanne Leigh–UCSF
Picture: The image is credited to Neuroscience News
Original Research: Open access.
“Perception of the Role of Alone in Providing Services to Patients with Cognitive Disorders” by Elena Portacolone et al. The Open JAMA Network
Perception of the Role of Alone in Providing Services to Patients with Cognitive Disorders
The potential role of living alone in facilitating or hindering access and use of services for older adults with cognitive impairment remains largely unknown. In particular, it is critical to understand first-hand from health and social service professionals how living alone creates barriers to access and use of health and social support services for patients with cognitive impairments of different races and ethnicities.
To identify the potential role of living alone in access to and use of health and social services for a diverse range of patients with cognitive impairment by investigating professional perceptions of caring for patients who live alone compared to peers who live with others.
Design, Setting, and Participants
Qualitative study of 76 physicians, social workers, and other professionals using semi-structured interviews conducted between February 8, 2021, and June 8, 2022, with a sample of professionals deliberately selected to provide services to diverse patients with cognitive impairment in Michigan, California, and Texas .
Key Results and Actions
Physicians, social workers, and other professionals compare serving patients with cognitive impairment and living alone vs colleagues living with others. Inductive content analysis was used to analyze the interview transcripts.
A total of 76 professionals were interviewed (average [SD] age, 49.3 [12.7] years); 59 people were women (77.6%), 8 people were black or African American (11%), and 35 people were white (46%). Participants included doctors, nurses, social workers and home care assistants, in a total of 20 professions.
Participants described specific factors that made serving older adults living alone with cognitive impairment more challenging than serving colleagues living with others (eg, unaccompanied, incomplete medical history, requiring difficult intervention), as well as factors that associated with increased anxiety when caring for the elderly. adults living alone with cognitive impairment, such as isolation and a crisis-dominated health care system.
Participants also identified reasons for the systematic unmet needs of elderly living alone with cognitive impairment for essential health services and social services, including policies that restrict access to and use of public health services at home.
Conclusion and Relevance
In this qualitative study from a professional point of view, findings indicate that living alone is a determinant of social health among patients with cognitive impairment due to major barriers to access to services. The results of this study raise major safety concerns because the US healthcare system is ill-equipped to meet the unique needs of older people living alone with cognitive impairment.
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