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Sociologist Elena Portacolone was taken aback. Many of the older adults in San Francisco she visited at home for a research project were confused when she came to the door. They’d forgotten the appointment or couldn’t remember speaking to her.
It seemed clear they had some type of cognitive impairment. Yet they were living alone.
Portacolone, an associate professor at the University of California-San Francisco, wondered how common this was. Had anyone examined this group? How were they managing?
When she reviewed the research literature more than a decade ago, there was little there. “I realized this is a largely invisible population,” she said.
Portacolone got to work and now leads the Living Alone With Cognitive Impairment Project at UCSF. The project estimates that at least 4.3 million people 55 or older who have cognitive impairment or dementia live alone in the United States.
About half have trouble with daily activities such as bathing, eating, cooking, shopping, taking medications, and managing money, according to their research. But only 1 in 3 received help with at least one such activity.
Compared with other older adults who live by themselves, people living alone with cognitive impairment are older, more likely to be women, and disproportionately Black or Latino, with lower levels of education, wealth, and homeownership. Yet only 21% qualify for publicly funded programs such as Medicaid that pay for aides to provide services in the home.
In a health care system that assumes older adults have family caregivers to help them, “we realized this population is destined to fall through the cracks,” Portacolone said.
Imagine what this means. As memory and thinking problems accelerate, these seniors can lose track of bills, have their electricity shut off, or be threatened with eviction. They might stop shopping (it’s too overwhelming) or cooking (it’s too hard to follow recipes). Or they might be unable to communicate clearly or navigate automated phone systems.
A variety of other problems can ensue, including social isolation, malnutrition, self-neglect, and susceptibility to scams. Without someone to watch over them, older adults on their own may experience worsening health without anyone noticing or struggle with dementia without ever being diagnosed.
Should vulnerable seniors live this way?
For years, Portacolone and her collaborators nationwide have followed nearly 100 older adults with cognitive impairment who live alone. She listed some concerns people told researchers they worried most about: “Who do I trust? When is the next time I’m going to forget? If I think I need more help, where do I find it? How do I hide my forgetfulness?”
Jane Lowers, an assistant professor at the Emory University School of Medicine, has been studying “kinless” adults in the early stages of dementia — those without a live-in partner or children nearby. Their top priority, she told me, is “remaining independent for as long as possible.”
Seeking to learn more about these seniors’ experiences, I contacted the National Council of Dementia Minds. The organization last year started a biweekly online group for people living alone with dementia. Its staffers arranged a Zoom conversation with five people, all with early-to-moderate dementia.
One was Kathleen Healy, 60, who has significant memory problems and lives alone in Fresno, California.
“One of the biggest challenges is that people don’t really see what’s going on with you,” she said. “Let’s say my house is a mess or I’m sick or I’m losing track of my bills. If I can get myself together, I can walk out the door and nobody knows what’s going on.”
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