Northeast Kingdom Council on Aging in Vermont
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Caring for Dementia Patients During a Pandemic

Mel Reis • June 11, 2020

Courtesy of the Caledonian Record - June 11, 2020

By Robin Smith, Staff Writer

Providing daily care for a loved one with Alzheimer’s or another form of dementia is very challenging. Doing it during a pandemic is something else entirely. Pamela Smith, director of caregiver support for the Northeast Kingdom Council on Aging, said she continues to be amazed at how caregivers have adapted during the COVID-19 pandemic, with the statewide stay-at-home orders, and the gradual re-opening of society. Now caregivers are beginning to see a return to home health or respite visits, but that comes with its own challenges. “People with dementia don’t understand what’s going on … when someone wears a mask,” Smith said. “They don’t have the capacity to be able to do that.” And the stress of dealing with a pandemic and a shut-down of society is hard to hide from loved ones, Smith said.

“Caregivers themselves may not show it or don’t think they are showing it to their loved ones. But people with dementia can be pretty in tune with what’s going on. … If you’re stressed as a caregiver your loved one is also.” It has been especially hard for caregivers who depended on adult daycare centers, which closed during the stay-at-home orders. Many caregivers rely on respite workers, and receive grants to cover that care, Smith said. But agencies weren’t able to send their workers into homes. “Folks who were used to in home help couldn’t have it any more.” Home delivery of food and prescriptions helped, and caregivers have had to be resilient. Caregivers “are dealing with the new normal,” Smith said. “It’s hard but they are doing it.” A lot of caregivers try not to allow their loved ones to nap during the day, because then they might be wakeful at night. But caregivers need that time now for essential house work or for time to look after themselves, Smith said.

Caregivers are reaching out for help more than ever in some locations, she said. She had 16 people involved at the Alzheimer’s support group at Northeastern Vermont Regional Hospital in St. Johnsbury. “That tells me there is a need out there.”

She’s broken the group into two, and conducted remote meetings with them. It’s a way to provide good information for caregivers, like tools to handle certain situations, and how to look after themselves, but it’s not the same as meeting in person.

For some caregivers, there are technical impediments to remote meetings, either lack of knowledge of or lack of access to high speed internet. And for many, these sessions are a chance to talk with others face to face about the challenges they share and to build relationships. There are tears. There are break-throughs. It’s very personal, and private.

At a session several years ago in Newport City attended by this reporter, participants were able to help a fellow caregiver who was in crisis, unable to see how anyone else could help her, by just offering their support. And other participants in the caregiver support group shared valuable ideas about how to carve out personal time during an otherwise busy day - ideas that have been helpful to this day long after the session ended.

Smith said that she is preparing for the time, perhaps by this summer, when she may be able to conduct a support group in person again, perhaps outside on a porch, or in a safe setting. “If we do it right, and find a big enough place where people can sit six feet apart and wear a mask.” In the meantime, Smith is reaching out however she can, with phone calls or one-on-one counseling by remote video conference, offering strategies and resources, “and letting them know that whatever happens they are not alone in their care-giving journey.” “And caregiver referrals are still coming in,” she said. “Even though we might be in COVID-19, it’s not stopping people from getting diagnosed and people are still having a hard time.”

Smith encouraged anyone who needs help as a caregiver to call the NEK Council on Aging at 800- 652-5119. And if anyone needs immediate help in a crisis, there is a national Alzheimer’s help line that operates 24-7 at 800-272-3900. Everyone is doing what they can to help each other, Smith said. And there’s hope for the future. “We are all looking forward to the time when we can get back together and give each a hug when we need to.”

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