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\u2019d forgotten the appointment or couldn\u2019t remember speaking to her.<\/p>\n
It seemed clear they had some type of cognitive impairment. Yet they were living alone.<\/p>\n
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?<\/p>\n
When she reviewed the research literature more than a decade ago, there was little there. \u201cI realized this is a largely invisible population,\u201d she said.<\/p>\n
Portacolone got to work and now leads the Living Alone With Cognitive Impairment Project<\/a> at UCSF. The project estimates that<\/a> that at least 4.3 million people 55 or older who have cognitive impairment or dementia live alone in the United States.<\/p>\n 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.<\/p>\n 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<\/a> for publicly funded programs such as Medicaid that pay for aides to provide services in the home.<\/p>\n In a health care system that assumes older adults have family caregivers to help them, \u201cwe realized this population is destined to fall through the cracks,\u201d Portacolone said.<\/p>\n 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\u2019s too overwhelming) or cooking (it\u2019s too hard to follow recipes). Or they might be unable to communicate clearly or navigate automated phone systems.<\/p>\n 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.<\/p>\n Should vulnerable seniors live this way?<\/p>\n 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: \u201cWho do I trust? When is the next time I\u2019m going to forget? If I think I need more help, where do I find it? How do I hide my forgetfulness?\u201d<\/p>\n Jane Lowers, an assistant professor at the Emory University School of Medicine, has been studying \u201ckinless\u201d adults in the early stages of dementia \u2014 those without a live-in partner or children nearby. Their top priority, she told me, is \u201cremaining independent for as long as possible.\u201d <\/p>\n Seeking to learn more about these seniors\u2019 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.<\/p>\n One was Kathleen Healy, 60, who has significant memory problems and lives alone in Fresno, California.<\/p>\n \u201cOne of the biggest challenges is that people don\u2019t really see what\u2019s going on with you,\u201d she said. \u201cLet\u2019s say my house is a mess or I\u2019m sick or I\u2019m losing track of my bills. If I can get myself together, I can walk out the door and nobody knows what\u2019s going on.\u201d<\/p>\n An administrator with the city of Fresno for 28 years, Healy said she had to retire in 2019 \u201cbecause my brain stopped working.\u201d With her pension, she\u2019s able to cover her expenses, but she doesn\u2019t have significant savings or assets.<\/p>\n Healy said she can\u2019t rely on family members who have troubles of their own. (Her 83-year-old mother has dementia and lives with Healy\u2019s sister.) The person who checks on her most frequently is an ex-boyfriend.<\/p>\n \u201cI don\u2019t really have anybody,\u201d she said, choking up.<\/p>\n David West, 62, is a divorced former social worker with Lewy body dementia<\/a>, which can impair thinking and concentration and cause hallucinations. He lives alone in an apartment in downtown Fort Worth, Texas.<\/p>\n \u201cI will not survive this in the end \u2014 I know that \u2014 but I\u2019m going to meet this with resilience,\u201d he said when I spoke with him by phone in June.<\/p>\n 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<\/a>.<\/p>\n Still, West knows that his illness will progress and that this period of relative independence is limited. What will he do then? Although he has three adult children, he said, he can\u2019t expect them to take him in and become dementia caregivers \u2014 an extraordinarily stressful, time-intensive, financially draining commitment.<\/p>\n \u201cI don\u2019t know how it\u2019s going to work out,\u201d he said.<\/p>\n Denise Baker, 80, a former CIA analyst, lives in a 100-year-old house in Asheville, North Carolina, with her dog, Yolo. She has cognitive problems related to a stroke 28 years ago, Alzheimer\u2019s disease, and serious vision impairment that prevents her from driving. Her adult daughters live in Massachusetts and Colorado.<\/p>\n \u201cI\u2019m a very independent person, and I find that I want to do everything I possibly can for myself,\u201d Baker told me, months before Asheville was ravaged by severe flooding. \u201cIt makes me feel better about myself.\u201d<\/p>\n She was lucky in the aftermath of Hurricane Helene: Baker lives on a hill in West Asheville that was untouched by floodwaters. In the week immediately after the storm, she filled water jugs every day at an old well near her house and brought them back in a wheelbarrow.\u00a0 Though her power was out, she had plenty of food and neighbors looked in on her.\u00a0<\/p>\n \u201cI\u2019m absolutely fine,\u201d she told me on the phone in early October after a member of Dementia Friendly Western North Carolina<\/a> drove to Baker\u2019s house to check in on her, upon my request.\u00a0Baker is on the steering committee of that organization.<\/p>\n Baker once found it hard to ask for assistance, but these days she relies routinely on friends and hired help. A few examples: Elaine takes her grocery shopping every Monday. Roberta comes once a month to help with her mail and finances. Jack mows her lawn. Helen offers care management advice. Tom, a cab driver she connected with through Buncombe County\u2019s transportation program for seniors, is her go-to guy for errands.<\/p>\n 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 \u2014 and Baker knows it will \u2014 she expects her long-term care insurance policy to pay for home aides or memory care. Until then, \u201cI plan to do as much as I can in the state I\u2019m in,\u201d she said.<\/p>\n Much can be done to better assist older adults with dementia who are on their own, said Elizabeth Gould, co-director of the National Alzheimer\u2019s and Dementia Resource Center at RTI International, a nonprofit research institute. \u201cIf health care providers would just ask \u2018Who do you live with?\u2019\u201d she said, \u201cthat could open the door to identifying who might need more help.\u201d<\/p>\n We\u2019re eager to hear from readers about questions you\u2019d like answered, problems you\u2019ve been having with your care, and advice you need in dealing with the health care system. Visit\u00a0kffhealthnews.org\/columnists<\/a>\u00a0to submit your requests or tips.<\/em><\/p>\n KFF Health News<\/a> is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF\u2014an independent source of health policy research, polling, and journalism. Learn more about KFF<\/a>.<\/p>\nUSE OUR CONTENT<\/h3>\n