Sociologist Elena Portacolone was shocked. Many of the elderly people he visited in San Francisco for a research project were confused when he came through the door. They had forgotten the appointment or did not remember talking to him.
It was clear that they had some sort of cognitive impairment. However, they lived alone.
Portacolone, an associate professor at the University of California-San Francisco, wondered how big this is. Has anyone reviewed this group? How did they manage?
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When he reviewed the research literature more than a decade ago, there was little. “I realized it’s a largely invisible population,” she said.
He started working at Portacolone and now drives Living Alone with Cognitive Impairment Project at UCSF. the project it calculates that At least 4.3 million people age 55 and older with cognitive impairment or dementia live in the United States.
About half have problems with daily activities such as bathing, eating, cooking, shopping, taking medication and managing money, according to their research. But only 1 in 3 received support with at least one such activity.
Compared to other seniors living alone, 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. However Only 21% comply For funded programs like Medicaid that pay aides to provide services at home.
In a health care system that assumes older adults have family caregivers to support them, “we realized this population is going 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 cut off, or face eviction. You might stop shopping (it’s too much) or cooking (recipes are too hard to follow). Or they may not be able to communicate clearly or navigate automated phone systems.
Many other problems can arise, including social isolation, malnutrition, self-neglect and susceptibility to deception. With no one to care for them, older adults can suffer from deteriorating health on their own without anyone noticing or struggle with dementia without ever being diagnosed.
Do the frail elderly have to live like this?
Over the years, Portacolone and his collaborators have followed nearly 100 adults with cognitive impairment who live alone across the nation. People listed some of the concerns that worried the researchers the most: “Who do I trust? When will I forget the next time? If I think I need more help, where will I find it? How will I hide my forgetfulness?”.
Jane Lowers, an assistant professor at Emory University School of Medicine, has been studying “unaccompanied” adults in the early stages of dementia who have no partners or children nearby. Their main priority, he told me, is to “be independent as long as possible.”
In an effort to learn more about the experiences of these seniors, I contacted the National Dementia Council. The organization started a fortnightly online group last year for people living alone with dementia. His staff arranged a Zoom interview with five people with early and moderate dementia.
One was Kathleen Healy, 60, who has severe 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,” he said. “Let’s say my house is a mess or I’m sick or I’m losing track of bills. If I fix myself, I can walk out the door and nobody knows what’s going on.’
Healy, a Fresno city administrator for 28 years, said he had to retire in 2019 because “my brain stopped working.” With his pension, he is able to meet his expenses, but he doesn’t have much savings or assets.
Healy said troubled family members can’t be trusted. (Her 83-year-old mother has dementia and lives with Healy’s sister.) The most controlling person is her ex-boyfriend.
“Actually I don’t have anyone,” he said, choking up.
David West, 62, is a divorced former social worker Lewy body dementiawhich can impair thinking and concentration and cause hallucinations. He lives alone in an apartment in downtown Fort Worth, Texas.
“I won’t survive in the end, I know, but I’ll fill it with resilience,” he said when I spoke to him by phone in June.
Since his diagnosis nearly three years ago, West has filled his life with exercise and joined three dementia groups. He spends 20 hours a week volunteering at a restaurant, a food bank, a museum and Dementia Assisted Fort Worth.
However, West knows that his disease will progress and that this period of relative independence is limited. What will he do then? Although she has three grown children, she said, she can’t hope to take them in and become a dementia caregiver — an extraordinarily stressful, time-intensive and financially draining commitment.
“I don’t know how it’s going to work,” he said.
Denise Baker, 80, a former CIA analyst, lives in a 100-year-old house in Asheville, North Carolina, with her dog, Yolo. He has cognitive problems related to a stroke 28 years ago, Alzheimer’s disease and severe visual impairment that prevents him from driving. Her grown daughters live in Massachusetts and Colorado.
“I’m a very independent person, and I feel like I want to do everything I can on my own,” Baker told me, months before Asheville was devastated by severe flooding. “It makes me feel better about myself.”
After Hurricane Helene, he was lucky: Baker lives on a hill in West Asheville untouched by flooding. Every day for the week after the storm, he filled water jugs from an old well near his house and brought them in on a wheelbarrow. Although he was without power, he had plenty of food and was looked after by his neighbors.
“I’m doing great,” he told me over the phone in early October after a member Dementia Support Western North Carolina I went to Baker’s house to report on him, at my request. Baker is on that organization’s board of directors.
Baker once struggled to ask for help, but now relies on friends and hired help. Some examples: Elaine does the grocery shopping every Monday. Roberta comes once a month to help with his mail and finances. Jack mows the lawn. Helen offers care management advice. Tom, a cab driver who was connected through Buncombe County’s senior transportation program, is her go-to guy for errands.
He has the authority to make legal and health care decisions for his daughter Karen Boston when Baker is unable to do so. When that day comes, and Baker knows it will, she hopes her long-term insurance policy will pay for home aides or memory care. Until then, “I plan to do the best I can in the situation I’m in,” he said.
Much can be done to better support older adults with dementia who are on their own, said Elizabeth Gould, co-director of the National Alzheimer’s and Dementia Resource Center at the nonprofit research institute RTI International. “Healthcare providers ask ‘Who do you live with?’ if they were to ask,” he said, “that could open the door to identifying who needs more help.”
KFF Health Newsformerly known as Kaiser Health News (KHN), is a national newsroom that produces in-depth journalism on health issues and is one of the leading program operators. KFF — Independent source for health policy research, polling and journalism.
