Dementia patients and caregivers: hard-hit by the pandemic
Everyone has been scathed in some way by the pandemic, and Alzheimer’s patients and their caregivers have been especially affected. One of the best ways to stave off dementia is to keep patients socially engaged and, since the pandemic shutdown began last year, neurologists have watched these patients deteriorate much more quickly.
“It’s been really devastating,” said Neurologist Sean Horrigan, DO, of Neurologists of Cape Cod. “With regard to this ongoing coronavirus emergency, I have been witness to many of my patients living with dementia now experiencing a significant decline in brain performance and overall quality of living because we have all been forced to keep so socially isolated due to COVID-19.”
Home companionship and other homecare services were all lost as a result of the shutdown, Dr. Horrigan said. Adult day care programs as well as patient and caregiver support groups were closed. All of a sudden, patients lost crucial services and their caregivers could never take a break.
“These activities and organizations were lifelines for my patients and now they’re gone,” he said. “Think of an elderly couple. The husband has Alzheimer’s disease. His wife, with her own health issues, is his primary caretaker. She was able to handle this living arrangement for several years because she had a visiting nurse, along with family and a trusted neighbor, helping to care for her husband on a regular basis. Perhaps, she had a home health aide coming in three days a week; maybe her husband was attending a day program as well. To lose all of these services and support systems, to then put it all back on the caregiver’s shoulders, this just can’t be handled well.”
Because of that, Dr. Horrigan has stayed in close touch through email with psychiatric nurse and dementia specialist Suzanne Faith, RN at the Cape Cod Healthcare Dementia & Alzheimer’s Caregiver Support program.
Faith, who teams up with Alan Johnson, LICSW, to provide services like support groups and education for caregivers, said the pandemic has taken a toll on caregivers.
“As our name suggests, we work with caregivers who are managing the care of a family member and we work with them through the entirety of the journey of the disease,” she said. “So, some of our families we’ve had for five or six years and then every day we have new ones join our program.”
As soon as the pandemic hit last March, all programs had to shift to Zoom, she said. Some people were comfortable doing that, while others were not. For those who can’t do Zoom, the telephone has been their lifeline.
“Heartbreaking to Watch”
Dementia patient caregivers fall into two groups. The first group are caregivers who are taking care of a family member in their home. The second are those whose loved one is in an assisted living or skilled nursing facility. Each group was harmed in different ways, Faith said.
“Family caregivers are isolated anyways,” she said. “As it dragged on, there were many caregivers who were extremely depressed because not only were they isolated, but homecare companies initially weren’t comfortable sending their caregivers into homes. For other people, even if there were companies that allowed people to go in, the families felt uncomfortable because these are frail elders that we’re talking about that have multiple disease problems.”
Alzheimer’s is a progressive disease, so one of the other complications is that the patients got much worse in isolation.
“That, alone, has added to this depression and what we call ‘anticipatory grief’ because this is a terminal illness,” she said. “To watch somebody that they love decline, it’s really painful.”
The natural progression of the disease means that a lot of patients eventually end up in assisted living and skilled nursing facilities. At that point the caregiver becomes more of an advocate for their loved one.
At this time, a lot of these facilities now let family members visit if they wear protective equipment or take a rapid test, but that wasn’t the case during most of the pandemic. Caregivers could only see their family members with window visits.
“The caregivers said at least they got to see them, but the heartbreaking thing for them, because these folks are also declining, is that they can’t touch them,” Faith said. “Touch becomes so important in communicating with somebody with dementia as the disease is progressing through all the stages, particularly in the end stages. That has been heartbreaking.”
In addition to support groups, the Dementia & Alzheimer’s Caregivers Support program also provides education about disease progression, managing behaviors and communication.
“Everyone is doing the best they can, but it has been a particularly difficult journey for these folks,” she said. “I feel like they are the true unsung heroes.”
To learn more about these programs or to sign up to receive services, call 774-552-6080 or email email@example.com. All programs and services are free of charge.