The Pandemic and Primary Progressive Aphasia

The emails to the NAA started early in the pandemic. The person had a loved one with primary progressive aphasia (PPA) in a long-term care facility, and they were unable to visit due to restrictions during COVID-19. What could they do so they could speak to their loved one face-to-face?

Unfortunately, there wasn’t an easy answer.

It’s a situation explored in a recent article in The Atlantic covering people with a range of neurodegenerative diseases, including primary progressive aphasia.

Primary Progressive Aphasia and the Pandemic

Social isolation impacts communication. Family members have been kept apart if one lives in a long-term care facility, and in-person therapy has been canceled or altered to keep people safe.

Primary progressive aphasia is a neurodegenerative disease affecting the left frontotemporal lobe. It impacts speech (and writing, reading, and comprehension). It creates aphasia because initial symptoms are tied to where the protein abnormalities start in the brain—in this case, the language center. While Alzheimer’s is the most well-known and common form of dementia, there are many other dementia syndromes, including PPA.

Becky Khayun of Cognitive Concierge explained dementia during a recent PPA chat: “Dementia refers to a cognitive impairment (memory, language, behavior) that gets worse over time.” With PPA, the problem begins with language, though memory may be impacted later in the disease.

The Atlantic article begins with the story of the Licatas: “Margaret Licata has watched her husband’s dementia progress gradually over the past two decades—and now, during the pandemic, all at once. Joe Licata, 79, has frontotemporal dementia with aphasia, which means that he cannot speak or understand language.”

The pandemic kept Joe from his dementia center in New York. His ability to care for himself quickly deteriorated.

This is why “The Alzheimer’s Association calls memory-loss patients the pandemic’s ‘hidden victims.’ For most of 2020, nursing-home patients were not permitted to have visitors or socialize with other residents. Meanwhile, patients who lived independently were also denied access to the day programs that are vital to slow their disease progression.”

There aren’t simple answers. The article highlights the gap that exists between the needs and resources for families impacted by dementia, and by opening the conversation, we can work to bridge that gap when possible.