Millions of aging Americans are themselves confronted with dementia

This article was originally published on KFF Health News.

Sociologist Elena Portacolone was amazed. Many of the older adults in San Francisco she visited at their homes for a research project were confused when she came to the door. They had forgotten the appointment or could not remember talking to her.

It seemed clear that they had some form of cognitive impairment. Yet they lived alone.

Portacolone, an associate professor at the University of California-San Francisco, wondered how often this happens. Has anyone researched this group? How did they cope?

When she looked through the research literature more than ten years ago, little of this was found. “I realized this is a largely invisible population,” she said.

Portacolone went to work and now leads the Living Alone With Cognitive Impairment Project at UCSF. The project estimates that at least 4.3 million people aged 55 or older with cognitive impairment or dementia live alone in the United States.

About half, according to their research, have problems with daily activities such as bathing, eating, cooking, shopping, taking medicine and handling money. But only 1 in 3 received help with at least one such activity.

Compared to other older adults who live alone, people with cognitive impairment who live alone are older, more likely to be female, and disproportionately black or Latino, with lower levels of education, lower wealth, and lower homeownership. Yet only 21% qualify for government-funded programs like Medicaid, which pay for assistive devices to provide services at home.

In a health care system that assumes older adults have caregivers to help them, “we realized that this population is destined to fall through the cracks,” Portacolone said.

Imagine what this means. As memory and thinking problems increase, these seniors may lose track of their bills, have their electricity turned off, or be threatened with eviction. They may stop shopping (it’s too overwhelming) or cooking (it’s too hard to follow recipes). Or they may not be able to communicate clearly or navigate automated phone systems.

A range of other problems can arise, including social isolation, malnutrition, self-neglect and susceptibility to scams. Without someone to watch over them, older adults may experience declining health on their own without anyone noticing, or struggle with it without ever being diagnosed.

Should vulnerable seniors live like this?

For years, Portacolone and her collaborators have followed nearly 100 older adults with cognitive disabilities who live alone across the country. She listed some of the concerns people told researchers they were most concerned about: “Who can I trust? When am I going to forget it next time? If I think I need more help, where can I find it? How do I hide my forgetfulness?”

Jane Lowers, an assistant professor at Emory University School of Medicine, has studied “familyless” adults in the early stages of dementia — people without a live-in partner or children around. Their top priority, she told me, is “staying independent for as long as possible.”

Wanting to learn more about these seniors’ experiences, I contacted the National Council of Dementia Minds. Last year, the organization started a biweekly online group for people with dementia who live alone. The staffers arranged a Zoom call 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. ‘Suppose my house is a mess, or I’m sick, or I lose track of my bills. If I can get myself together, I can walk out the door and no one will know what’s going on.

An administrator with the city of Fresno for 28 years, Healy said she had to retire in 2019 “because my brain stopped working.” Her pension allows her to cover her expenses, but she does not have significant savings or assets.

Healy said she can’t rely on family members who have problems of their own. (Her 83-year-old mother has dementia and lives with Healy’s sister.) The person who visits her most often is an ex-boyfriend.

“I don’t really have anyone,” she choked out.

David West, 62, is a divorced former social worker with Lewy body dementia, which can impair thinking and concentration and cause hallucinations. He lives alone in an apartment in downtown Fort Worth, Texas.

“Ultimately I’m not going to survive this – I know that – but I’m going to face this 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 support groups. He spends up to 20 hours a week volunteering at a restaurant, a food bank, a museum and dementia-friendly Fort Worth.

Still, West knows his illness will worsen and that this period of relative independence is limited. What will he do then? Although he has three adult children, he says, he can’t expect them to take him in and become dementia caregivers — an extremely stressful, time-consuming and financially draining task.

“I don’t know how it’s going to end,” he said.

Denise Baker, 80, a former CIA analyst, lives with her dog Yolo in a 100-year-old house in Asheville, North Carolina. She has cognitive problems related to a stroke 28 years ago, Alzheimer’s disease and severe visual impairment that prevents her from driving. Her adult daughters live in Massachusetts and Colorado.

“I’m a very independent person and I find myself wanting to do everything I can for myself,” Baker told me, months before severe flooding ravaged Asheville. “It makes me feel better about myself.”

She was lucky in the aftermath of Hurricane Helene: Baker lives on a hill in West Asheville untouched by flooding. Every day in the week immediately after the storm, she filled water jugs at an old well near her house and brought them back in a wheelbarrow. Even though her power was out, she had enough food and the neighbors were watching her.

“I’m doing absolutely fine,” she told me on the phone in early October after a member of Dementia Friendly Western North Carolina drove to Baker’s house to check on her at my request. Baker is on the steering committee of that organization.

Baker once found it difficult to ask for help, but today she routinely relies on friends and hired help. A few examples: Elaine goes shopping every Monday. Roberta comes once a month to help with her mail and finances. Jack mows her lawn. Helen offers healthcare management advice. Tom, a taxi driver she connected with through Buncombe County’s senior transportation program, is her go-to person for groceries.

Her daughter Karen in Boston has the authority to make legal and health care decisions when Baker can no longer do so. When that day comes — and Baker knows it will — she expects her long-term care insurance to cover the costs of home health or memory care. Until then, “I plan to do as much as I can in the state I’m in,” she said.

Much can be done to better help older adults with dementia who are on their own, says Elizabeth Gould, co-director of the National Alzheimer’s and Dementia Resource Center at RTI International, a nonprofit research institute. “If caregivers simply asked, ‘Who do you live with?’” she said, “that could open the door to identifying who may need more help.”

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