Judith Graham, KFF Health News (TNS)
Sociologist Elena Portacolone was amazed. Many of the older adults in San Francisco whose homes she visited as a part of a research project were confused when she got here to the door. They had forgotten the appointment or didn't remember chatting with her.
It seemed clear that that they had some kind of cognitive impairment. Yet they lived alone.
Portacolone, an associate professor on the University of California-San Francisco, wondered how common this was. Had anyone researched this group? How did they get along?
When she reviewed the research literature greater than a decade ago, there was little to be found. “I realized this is a largely invisible population,” she said.
Portacolone set to work and is now in charge “Living alone with cognitive impairment” project. at UCSF. The project appreciates that that within the United States, not less than 4.3 million people age 55 and older live alone with cognitive impairment or dementia.
According to their study, about half have problems with on a regular basis activities resembling bathing, eating, cooking, shopping, taking medication and managing money. But just one in three received help with not less than one such activity.
Compared to other older adults who live alone, people living alone with cognitive impairments are older, more prone to be women, and disproportionately Black or Latino, with lower levels of education, wealth, and residential ownership. Still only 21% qualify for publicly funded programs resembling Medicaid that pay aides to offer services in the house.
In a health system that assumes older adults have family caregivers to assist them, “we realized this population was destined to fall through the cracks,” Portacolone said.
Imagine what meaning. As memory and pondering problems increase, these seniors may lose track of their bills, have their power turned off, or face eviction. You may stop shopping (it's too overwhelming) or cooking (it's too difficult to follow recipes). Or they could not have the ability to speak clearly or navigate automated telephone systems.
Quite a lot of other problems may end up, including social isolation, malnutrition, self-neglect and vulnerability to fraud. Without someone to take care of them, older adults can find their health deteriorating without anyone noticing or scuffling with dementia without ever being diagnosed.
Should at-risk seniors live like this?
For years, Portacolone and her staff have supported nearly 100 older adults with cognitive impairments who live alone across the country. She listed some concerns that researchers were most fearful about: “Who do I trust?” When will I forget next? If I believe I would like 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 “kinless” adults within the early stages of dementia – those with out a spouse or children nearby. Her top priority, she told me, was “to remain independent for as long as possible.”
To learn more about these seniors' experiences, I contacted the National Council of Dementia Minds. The organization launched a bi-weekly online group last yr for individuals with dementia living alone. Staff arranged a Zoom call with five people, all with early to moderate dementia.
One of them 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 in chaos, 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 knows what’s going on.”
Healy was a Fresno city clerk for 28 years and said she needed to retire in 2019 “because my brain stopped working.” She can cover her expenses together with her pension, but has neither significant savings nor assets.
Healy said she will be able to't depend on members of the family who’re struggling themselves. (Her 83-year-old mother has dementia and lives with Healy's sister.) The one that checks on her most frequently is an ex-boyfriend.
“I don’t really have anyone,” she said, choking.
David West, 62, is a divorced former social employee Lewy body dementiawhich might affect pondering and concentration and cause hallucinations. He lives alone in an apartment in downtown Fort Worth, Texas.
“I won’t survive this in the end – I know that – but I will face it steadfastly,” he said once I spoke to him on the 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 as much as 20 hours per week volunteering at a restaurant, food bank, museum, etc Dementia Friendly Fort Worth.
Still, West knows that his illness will progress and that this era of relative independence is proscribed. What will he do then? Even though he has three adult children, he said, he couldn't expect them to take him in and develop into a dementia caregiver – a very stressful, time-consuming and financially burdensome commitment.
“I don’t know how it’s going to turn out,” he said.
Denise Baker, 80, a former CIA analyst, lives together 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 a severe visual impairment that stops her from driving. Their adult daughters live in Massachusetts and Colorado.
“I'm a very independent person and want to do everything I can,” Baker told me months before Asheville was hit by severe flooding. “It makes me feel better.”
She was lucky after Hurricane Helene: Baker lives on a hill in West Asheville that was spared from flooding. Every day within the week immediately following the storm, she filled water jugs at an old well near her home and brought them back in a wheelbarrow. Even though her power was out, she had plenty to eat and the neighbors checked in on her.
“I'm absolutely fine,” she told me on the phone in early October, in line with a member of Dementia Friendly Western North Carolina drove to Baker's house to examine on her at my request. Baker is a member of that organization's steering committee.
Baker used to have a tough time asking for help, but nowadays she routinely relies on friends and hired help. A couple of examples: Elaine goes shopping every Monday. Roberta comes once a month to assist together with her mail and funds. Jack mows her lawn. Helen provides advice on care management. Tom, a taxi driver she met through the Buncombe County Senior Transportation Program, is her go-to person for errands.
Her daughter Karen in Boston has the authority to make legal and health decisions if Baker becomes unable to achieve this. When that day comes — and Baker knows it can — she expects her long-term care insurance to pay for home help or memory care. Until then, “I plan on doing as much as I can in the state I'm in,” she said.
Much will be done to higher support older adults with dementia who’re fending for themselves, said Elizabeth Gould, co-director of the National Alzheimer's and Dementia Resource Center at RTI International, a nonprofit research institute. “If health care providers would simply ask, 'Who do you live with?'” she said, “that could open the door to identifying who may need more help.”
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