DETROIT – George Pitchford knew his wife, Bettie, a retired educator whose once lively mind was lost in the fog that is Alzheimer’s, was only going to get worse. But he hadn’t expected her to die, at least not so soon.
It started with the coronavirus pandemic, Bettie’s ramped up decline.
The nursing center where she lived closed to visitors and everything changed. George and a legion of family friends were no longer allowed to take Bettie on the walks she so greatly enjoyed.
Within months, she was in a wheelchair. They saw her only through window visits or via FaceTime calls, neither of which were especially productive.
Bettie seldom spoke. And after awhile, the glimmer of recognition that appeared in her eyes when she heard George’s voice disappeared. She didn’t want to eat. “All these things just sort of fed on each other,” George Pitchford said.
And in September, 76-year-old Bettie Pitchford, who had once been an accomplished quilter, occasional clown for children’s parties, active member of her church and the NAACP and director of special education for the Pontiac School District outside of Detroit, became one of thousands of Americans with dementia to die unexpectedly, succumbing not to the infection of COVID-19, but to the way it completely upended their already off-kilter lives.
Nationally, about 259,250 people with Alzheimer’s or other forms of dementia were expected to die last year, according to the Alzheimer’s Association. But federal data analyzed by the association shows that the number of dementia deaths, at least through the end of November, was 16% higher than expected. Which means more than 38,000 people who weren’t expected to die ended up doing just that.
“I’m trying to think of any other equivalent time,” Dr. Judith Heidebrink, a University of Michigan neurologist who specializes in Alzheimer’s disease said when asked whether there has ever been a more dire time than this for dementia patients.
But, she added, “I’m not coming up with any.”
Experts are working on explanations for the increase in deaths.
They say it’s possible some people died from undiagnosed cases of COVID-19. Heavy concentrations of dementia patients live in congregate care facilities, settings that have been hot spots for COVID-19.
It’s possible they weren’t tested — especially during the beginning of the pandemic when tests weren’t widely available. Just as it’s possible they were tested but the results came up as false negatives.
It’s possible the level of care they received declined with the pandemic. Dementia patients tend to require a great deal of care and many have other health issues or comorbidities. The already overworked ranks of caregivers in at-home as well as in professional settings were stretched even further when they became sick with COVID-19. Keeping up with the patients may have become difficult.
Judy Smith wonders whether substitute caregivers knew that her husband, 73-year-old Florian, who served as a medic in Vietnam and retired from Buick, had to be really, really coaxed to eat. “There were days that they couldn’t get him to eat,” said Judy, who is 73 and lives in Flint. “If I was feeding him, sometimes I could get him to eat. If you put the food in his mouth, he would eat it.”
But she wasn’t able to do that and while he was already quite ill with heart disease — he’d even lost interest in watching Westerns, something he’d loved to do — she believes not being able to see him in person every day hastened his death.
Florian died in September.
It’s also possible that reduced access to medical care — many people, not just dementia patients have postponed medical care during the pandemic, not wanting to risk going to a medical office or a hospital for fear of being exposed to the coronavirus — caused their conditions to spin out of control.
But perhaps the biggest factor in the increase of deaths of dementia patients is the protocols in place to keep the coronavirus from spreading and the changes in routine — including a lack of visitors and the isolation — that accompany them.
Dementia patients do best when they have a set routine and social interaction.
“They might have been going to the dining room at noon to interact with other residents … now it’s a food tray passed through door,” said Heidebrink. “They can’t go to their fitness center to have that regular exercise .. all that’s been upended by this pandemic.
“When someone is experiencing a disease that inherently has a loss of cognition … the more we practice, maintain those skills” the better off they are, Heidebrink added. “There’s a lot of use it or lose it to begin with. If you don’t keep doing things, you lose the capacity or the skill of being able to do that. … If we can keep them practicing and keep them rehearsing, it’s a way to kind of slow that decline.”
George Pitchford, a 78-year-old retired pharmaceutical company manager who lives in Sylvan Lake, Michigan, agrees. “I believe that … moving around, keeping going, being active, socializing … is sort of a stimulant to keeping us viable in many, many, many regards.
“And certainly if you are confined in a place like that, you don’t have anybody to prod and do the things with you … I can’t imagine it not having an impact on your decline. If for no other reason, you’ve got somebody there,” helping the caregivers. “Regardless of how much support care you have from the caregivers, they are not staffed to provide that kind of attention.”
What can be done to stem dementia deaths?
Colin Ford, policy director for the Michigan chapter of the Alzheimer’s Association, is hopeful the COVID-19 vaccine will alleviate much of this issue. In the meantime, the association is advocating for more rapid testing in nursing homes and more personal protective equipment to make homes safer from COVID-19 so they can be opened for visitors.
And Heidebrink is urging people to do whatever they can to interact safely with loved ones. That means phone calls, window visits, video chats, establishing a good relationship with caregivers and informing caregivers of a loved one’s preferences and quirks.
“It means getting creative,” said Heidebrink.
“It’s been a challenge for everybody,” she added. “I really can’t think of a time that’s wiped out so many tools and affected so many people in so many ways.”
For resources for Alzheimer’s patients or caregivers: alz.org
Follow reporter Georgea Kovanis on Twitter: @georgeakovanis
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