SANTA FE – Once or twice a week, Mary Austin – 87 and in the early stages of dementia – pulls open the window at her assisted-living facility and says she’s ready to hear confession.
Austin knows it’s a joke.
She hasn’t lost her sense of humor, even as the COVID-19 pandemic makes it more difficult to connect with family members and fight social isolation.
Austin’s periodic window visits with her children have been especially vital this year. Adults with Alzheimer’s or dementia are dying in higher-than-average numbers across the nation, and the trend is particularly pronounced in a swath of states stretching from Nevada through New Mexico to Mississippi.
Combating social isolation is a priority for their caregivers and others.
“The one thing I miss is being able to take my Mac into her room and show her videos,” one of Austin’s children, Carol Birks, said in an interview. But “it’s just very hard for everybody now.”
Through late September, New Mexico had about 26% more Alzheimer’s and dementia deaths this year than its average for a previous five-year period, according to the Alzheimer’s Association, a nonprofit group based in Chicago. The nation as a whole had about 17% more such deaths.
For reasons that aren’t clear, New Mexico and neighboring Arizona – which has had 32% more deaths than average – and Texas – about 26% – are part of a band of contiguous states running from the West to the South with the highest rates of additional Alzheimer’s and dementia deaths.
Altogether, the Alzheimer’s Association estimated about 31,000 more people across the country died of Alzheimer’s and dementia than average this year, including about 260 in New Mexico, through late September.
Some of the fatalities may be COVID-19 deaths that were inaccurately recorded, especially early in the pandemic when testing wasn’t as accessible, according to the association.
But indirect causes may also be a factor – including an overburdened health system, fear of seeking treatment or causes related to economic shutdowns and stay-at-home orders, the association said.
Social isolation – either at home or in a facility – is a likely factor in the increased deaths, according to Journal interviews with physicians and others. It can lead to depression in adults with dementia and leave fewer people watching for early signs of other health problems.
In an interview, Birks said the window visits with her mom, Austin, were a welcome opportunity to stay connected while indoor visitation is restricted. New Mexico has a county-by-county system for determining the scale of visitation allowed in nursing homes and long-term care facilities, depending on the coronavirus test positivity rate in the county and other factors.
Nursing home visits were not allowed in most cases for nearly five months during the initial stages of the pandemic, before the state eased the restrictions in August with county-level standards.
Austin has vascular dementia with Alzheimer’s, a condition Birks said is in its early stages.
Sometimes they keep her bedroom window closed, depending on the restrictions in place at the time. They wear masks and keep their distance, in any case.
“For her, it’s a matter of great relief,” Birks said of the window visits. “She feels very safe. But I’ve run into other family members outside other windows mumbling under their breath that this is crazy.”
Death rate increases
Alzheimer’s and dementia aren’t the only conditions killing people at a greater rate this year.
In fact, about 1,900 more people have died than expected in New Mexico since February, according to a calculation published Thursday by the U.S. Centers for Disease Control and Prevention. The estimate includes additional deaths “over the average expected number” of all causes, including Alzheimer’s disease and dementia, heart disease and cancerous tumors.
The CDC calculation suggests New Mexico’s official death toll related to the virus – more than 1,700 residents – understates the pandemic’s impact.
Dr. David Scrase, a geriatrician and secretary of the state Human Services Department, said in October that New Mexico was having about 7% more deaths this year than last year – the bulk of the increase attributed directly to coronavirus.
But some of the deaths, he said in a recent interview, are linked to broader changes. Families are under extra stress as people lose their jobs, Scrase said, and some residents may delay routine health care because of fears about catching COVID-19.
“It’s a complex dynamic,” he said.
The entire health care system, Scrase said, is also under more strain.
“It makes sense that you’re going to trigger more illness in a population,” Scrase said.
Jesus Duran, a Las Cruces doctor, said he is seeing increased signs of mental health trouble in his dementia patients. He believes more patients may also be using alcohol or pain pills.
“The fact patients are being isolated at home or being isolated from other family members, especially, has created a ton of stress for a lot of people,” Duran said. “I think we’ve seen an increase in anxiety and depression.”
Depression in someone with Alzheimer’s or dementia is particularly dangerous.
Janice Knoefel, a neurologist and geriatrician at the University of New Mexico Alzheimer Disease Research Center, said adults with Alzheimer’s or dementia sometimes stop eating and moving around when depressed.
“That’s a real problem,” she said.
The pandemic is also adding to the burden of families caring for loved ones. In New Mexico, day care centers for adults have been closed due to the risk of COVID-19, leaving family members exhausted.
“There’s less social interaction with the person with the dementia,” Knoefel said, “but as importantly, if not more importantly, the individual caregiver – usually a spouse, usually of equally advanced age – is now not getting any break, not getting any help.”
Tim Sheahan, executive director of the New Mexico chapter of the Alzheimer’s Association, said the group’s help line has had an increase in calls this year from caregivers.
“We’re really there for the compassion and support of the caregivers,” Sheahan said. “Those are the people who are really stressed out and don’t know what to do.”
His organization has distributed 22 tablets loaded with “The Adventures of Ozzie and Harriet” and other old shows to provide stimulation for people with Alzheimer’s. The tablets also can be used to make calls and look at family pictures.
Knoefel, the UNM neurologist, said it’s critical to stay in touch to ease the isolation.
“I think it is really important for us to support each other,” she said, “and that includes not only our family members living in nursing facilities but also family members who are being taken care of by other members of our families. Keep in touch, write those letters, make those phone calls.”
And if permitted, she said, “Go do those window visits, no matter how weird it is.”
Despite the risk of isolation, Knoefel said she doesn’t think relaxing the state’s visitation restrictions is necessarily the answer. COVID-19 outbreaks inside nursing homes, she said, have killed thousands.
“It’s a tough line to walk,” Knoefel said. “We have to protect the vulnerable.”
Vaccines on the horizon
The pandemic has tightened its grip on New Mexico over the past few months. The state has routinely broken its own records for COVID-19 cases, hospitalizations and deaths.
It’s been the site of one of the worst outbreaks in the country.
But there are some positive signs – including a plateau or even decline in new daily cases over the past week, usually a leading indicator, followed by similar trends in hospitalizations and deaths.
New Mexico and other states are also preparing for the arrival of vaccines, though the timing is unclear. National experts say vaccines aren’t likely to be widely distributed before the spring.
New Mexico intends to prioritize nursing home residents when vaccines are available, according to a preliminary plan filed with the CDC in October.
Health care workers would be first in line, but residents of long-term care facilities would be among a broader group of people to get the vaccines next, including first responders and people living in group settings.
Birks hasn’t hugged her mom since March 12. She remembers the exact date. And she said she is looking forward to the day she can do it again.