Trapped in their homes, elderly are isolated, fearful, UCSF-led study shows
The pandemic has exacerbated isolation and fears for one very vulnerable group of Americans: the 4.3 million older adults with cognitive impairment who live alone.
As the coronavirus continues to claim more lives and upend others, researchers led by UC San Francisco are calling for tailored services and support for older adults living alone with memory issues, who are experiencing extreme isolation and are exposed to misinformation about the virus and barriers to accessing medical care.
In their qualitative study, researchers interviewed 24 San Francisco Bay Area residents whose average age was 82. Of these, 17 were women, and 13 were either monolingual Spanish-speakers or Cantonese speakers; 18 were widowed or divorced; 10 depended only on the in-person care of their family, eight only on in-person home care aides and six on both family and aides. Findings appear in The Gerontologist on Jan. 6, 2021.
Among the most extreme emotions expressed was a desire by a few participants for the coronavirus to take their own lives “so that they could finally end their struggles.” One participant said they were “fed up with the life that I have been given” and a second, who was struggling with an Alzheimer’s disease diagnosis, said that they would welcome the virus as “an escape plan.”
“One-third of those with cognitive impairment live alone. This is a demographic at high risk for loneliness and distress, as well as negative health outcomes, even before the pandemic,” said first author Elena Portacolone, PhD, MBA, MPH, of the UCSF Institute for Health & Aging. “Public health recommendations that mitigate the spread of COVID-19, including shelter-in-place and physical distancing, reduce access to those amenities that had offered support to isolated older adults.”
Some of the study participants lived in cramped or inhospitable accommodation and reported that they felt “trapped in their own homes.” Most participants were no longer able to seek companionship at church services, senior centers, restaurants or to interact with neighbors.
“I was most concerned by participants’ extreme isolation,” said Portacolone. “Some participants were particularly distressed, two of them had had suicidal ideation before the pandemic, yet they received little or no support for their mental health.”
For some, long lines trigger memories of war, famine
Because the participants lived alone, they faced their fears alone. Some were afraid of dying of the virus, despite limited contact with the outside world, and some shared that long lines outside grocery stores reminded them of past experiences of war or famine. Others worried about racial attacks and rioting that had followed the death of George Floyd.
Misinformation about the virus was apparent in many interviews. One participant learned from WhatsApp, the messaging app, that gargling with salt water would treat the virus; another said that a doctor on TV had dissuaded them from getting the vaccine. Other participants claimed that going out without a face covering would result in a $400 fine or jail time.
Many participants struggled with gaining access to their medical provider. Some were concerned that entering a clinic would put them at risk for COVID-19, while one participant with diabetes expressed frustration with the phone appointment that was offered, since “I don’t even answer my phone … (and) I have a poor mind.” Another participant said that it had taken them three or four months to make an appointment with their eye doctor after they were told that services were not available.
While the participants who had family support reported less distress, home care aides were recognized as providing companionship, as well as assistance with meal preparation and chores. But unlike other Western countries, the United States only covers the cost of home care aides for those with medical needs on very low incomes, Portacolone noted.
“Well-trained and state-subsidized home care aides are the life blood in the support system for older adults with cognitive impairment living alone. The regular presence of someone reliable to ask questions, receive nudges and instrumental support, as well as company, is invaluable.”
The home care aides should be integral to a “therapeutic alliance” that offers tailored services and support from social workers, case managers and mental health services if required, she said.
“These services are critical for maintaining the health and wellbeing of older adults living alone with cognitive impairment,” said senior author Julene K. Johnson, PhD, of the UCSF Institute for Health & Aging and the Center for Aging in Diverse Communities. “More robust financial support of home care aides is needed.”
Co-Authors: Kenneth Covinsky, MD, MPH, Sahru Keiser, MPH, Jennifer Fung, Elizabeth Rivera, Thi Tran and Camilla Bykhovsky of UCSF; Anna Chodos, MD, MPH, of UCSF and Zuckerberg San Francisco General Hospital; Jodi Halpern, MD, PhD, of University of California Berkeley.
Funding: National Institute on Aging, Alzheimer’s Association and Pepper Center at UCSF.
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