COVID-19’s hidden victims, Alzheimer's patients in nursing homes
When Ken Gregersen, 88, left his wife's nursing home in Ankeny, Iowa, on March 11, he didn't know that that would be the last time he'd see her for two months.
"I got an email, or I got notified by the care facility that no longer could I visit her. So I haven't actually seen her then since March," he told ABC News.
Evie, his wife of 67 years, is in the late stages of Alzheimer's disease and receives hospice care. Just like thousands across the country, her nursing home closed its doors to visitors amid the coronavirus outbreak.
The COVID-19 pandemic has rocked long-term care facilities. State data analyzed by ABC News reveals that almost a third of coronavirus deaths come from nursing homes.
With nearly half of all long-term care facility residents living with Alzheimer's or dementia, individuals with the disease have become one of the most disproportionately impacted groups from COVID-19 in the country.
As coronavirus-related deaths continue to climb, some observers have raised alarms that not enough is being done to protect Alzheimer's and dementia patients and those in long-term care facilities.
"Given some of the numbers that have now emerged, it's pretty clear that we did not have and probably still today don't have what would be full transparency on an accurate and timely basis about where the cases are occurring," Alzheimer's Association CEO Harry Johns told ABC News.
Alzheimer's, a chronic neurodegenerative disease, itself, does not make someone more vulnerable to coronavirus. However, those with the illness are more susceptible because they are usually older and/or have co-morbidities. Living in nursing homes also heightens the COVID-19 exposure risk for Alzheimer's and dementia patients.
Still, health concerns are not the only extra burden these individuals carry amid the outbreak. The enforced separation of nursing home residents from their families and loved ones may only increase the hardship.
"Depending on the degree of progression of the disease, someone with Alzheimer's may not understand what's going on," Johns said.
"[They] may not understand then why they can't leave the house. Why the kids are at home and extended family. Those kinds of confusions can, in and of themselves create challenges for the individual who has dementia, as well as for those carers," he added.
Johns says he believes current public health circumstances impact those with Alzheimer's more than other care home residents.
"For any resident that family contact is so important if someone is ill. But for Alzheimer's, people who have dementia, it is especially difficult because the connections to family can -- when someone has progressed -- keep them grounded," Johns told ABC News.
Coronavirus has also forced families of individuals living with Alzheimer's and dementia to navigate not seeing their loved ones for extended periods of time.
"It's not enjoyable at all. I don't know the right emotional words to say. I really do miss her. We're a very close couple, we've been married this long. We've had a wonderful marriage," Ken Gregersen said.
Ken's wife, Evie, moved to her nursing home in 2016 after her Alzheimer's diagnosis in 2012. Before the coronavirus outbreak, he would visit his wife three times a day.
"I would go over there and give her her breakfast. And then I'd go back and give her her lunch, and then I also (went) back to give her her dinner in the evening. And that's when I usually stayed a few minutes extra and I'd walk her around in her wheelchair and sing a song to her. And so I could then go from being her caregiver to being her husband again," he said.
While Evie's nursing home ended visits, Ken still talks to his wife every weekday on FaceTime. He said as Evie's condition deteriorates -- she can no longer open her eyes or speak -- he worries about many unknowns.
"Every day, when I see her FaceTime, and I talk to her and I try to tell her, what's going on in my life, or what are our children or grandchildren are doing, I always wonder does she hear me? Does she understand me? Does she miss me? You know, it makes me very anxious," he added.
Although Evie's nursing home has reported no patients or caregivers testing positive for coronavirus, Ken still worries what could happen if his wife contracts the virus.
"I know that I'm going to lose her someday. I mean I'm prepared for that. I think people who are taking care of someone with Alzheimer's, they start through the grieving process long before death occurs," he said.
"I know it's going to occur, but I don't want her to suffer. And the COVID virus ... it looks like there's a lot of suffering going on, you know, gasping for air and being so uncomfortable. That worries me," he added.
Ken says he's satisfied with the precautions Evie's nursing home has taken. However, as coronavirus cases rise in long-term care facilities, there have been calls for states and the federal government to do more to protect care facilities.
This week, the Alzheimer's Association announced new policy recommendations to fight coronavirus in long-term care facilities.
Johns identifies increased transparency, testing and personal protective equipment (PPE) as critical in fighting the disease at nursing homes, and helping to get to a point where family members can visit their loved ones.
"We believe it takes these multiple approaches. That PPE will make a difference, but if you don't have the testing, then you can't prevent the outbreaks. If you don't have the transparency, you can't deal rapidly enough with the outbreaks. So, it is the dynamic combination of doing these things that we believe is most crucial," Johns said.
"It is the dynamic of all of these things happening to improve people's lives, save people's lives and really, relieve the burden that is so present for people who care for those with Alzheimer's and other dementia," he added.
On Monday, President Donald Trump's administration also called for increased coronavirus testing with Vice President Mike Pence telling governors he wants to see every state prioritize COVID-19 screening inside the facilities.
However, those guidelines do not go as far as those of the Alzheimer's Association.
But until those guidelines are met, people continue to wait to visit their loved ones living in long-term care facilities. Meanwhile, family members, like Gregersen, settle for seeing their parents, spouses and friends' faces confined to portable screens.
"Thank goodness the hospice caregivers who come in set up a FaceTime event Monday to Friday so that I get a chance to see [Evie's] face. She no longer opens her eyes, but I'd like to think that she hears my voice. And I'd like to think she recognizes it," Gregerson said.
What to know about coronavirus:
- How it started and how to protect yourself: Coronavirus explained
- What to do if you have symptoms: Coronavirus symptoms
- Tracking the spread in the U.S. and worldwide: Coronavirus map
