“There’s always one,” says an Alzheimer’s Association Long Island chapter constituent, referring to herself as her mother’s self-designated caregiver. “I have siblings but I wanted to be involved with my mom’s care when she began to show signs of mild cognitive impairment.”
A year later, in 2017, her then 88-year-old mother moved into a long-term care facility. As the North Shore resident’s health began to decline further, she was transferred to hospice care, meaning her condition is not expected to improve.
Earlier this month, the worst-case scenario happened: she was barred from seeing her mother due to fears of COVID-19 spreading.
“The quarantine was horrifying. At my mom’s facility, I see a couple of partners who are there every day, one who comes after breakfast and stays until after dinner,” said the constituent, who wishes to remain anonymous.
“It’s very traumatizing because you’re so worried about your loved one and how they’re processing this. People living with dementia are aware of what’s happening even though they may not be able to remember. Their face lights up when a loved one walks in…They still have emotions.”
Thankfully, she and a few others in a similar situation were able to briefly visit their loved ones. Still, it was far from ideal and fraught with stress: “I was able to go in for ten minutes wearing a mask. It was rushed, and a staff member was in the room helping her. I will do it again, but not too often.”
When asked what her mother thought about the drastic change in her life, the constituent said, “I tried to explain to her that the coronavirus is like the polio virus from when she was little. She looked worried, but she understood.”
While the COVID-19 pandemic threatens the health of millions in this country and around the world, the novel coronavirus presents unique challenges for more than 5 million Americans living with Alzheimer’s and their caregivers.
The constituent was torn over how to best care for her mother, saying, “The news is saying that these are the most vulnerable population: where is the caregivers’ responsibility? To make that human connection? Or is it practical, to contain a disease? Their worrying is two-fold: their loved one’s physical health and their emotional health.”
Although her own mental health has been strained, she concluded: “Family members certainly don’t want to make a fuss and put a fragile population in danger. If their loved ones are safe, that’s the most important thing.”
Most notably, public health strategies aimed at limiting contact with others is nearly impossible for people living with Alzheimer’s and other dementias, who rely on family caregivers and others to live their daily lives. According to the Alzheimer’s Association, dementia most likely does not increase risk for COVID-19, the respiratory illness caused by the new coronavirus, just like dementia does not increase risk for flu. However, dementia-related behaviors, increased age and chronic health conditions that often accompany dementia may increase risk.
For example, people with dementia may forget to wash their hands or take other recommended precautions. It is important to recognize that the elderly, those with chronic conditions of the heart and lungs or diabetes are at the highest risk for complications from COVID-19, and the flu.
Viruses like COVID-19 and the flu may worsen cognitive impairment due to dementia.
People living with Alzheimer’s or other dementia are often underdiagnosed and undertreated for viruses like influenza, and other conditions. If you become aware of flu-like symptoms in a loved one with dementia, take the person’s temperature and take the person to the doctor for assessment and treatment right away.
The health and safety of our constituents, volunteers and staff remain the Alzheimer’s Association’s driver as we address the COVID-19 outbreak and continue pursuing our mission. Based on guidance from local public health agencies, we are implementing the following precautionary measures.
Staff is working remotely. We are prepared with technological and other support to successfully pursue our mission under these circumstances.
Meetings, events and other activities will be conducted online or by phone whenever possible. For updates on events and other information, please check alz.org/CRF. During this time, the Alzheimer’s Association is available to you 24/7 for assistance and support at 800.272.3900.