The National Aphasia Association estimates that roughly 2 million Americans suffer from the disorder, and recovering from it is particularly challenging during the coronavirus pandemic, which has touched every corner of the world. People with aphasia are often elderly and therefore vulnerable to COVID-19. And because of shelter-in-place orders, many are unable to attend their regular speech therapy sessions. If therapy is offered online instead, there may be challenges with using the technology to access care. “COVID-19 has cut off social interactions and mental stimulation for patients with cognitive disorders,” says David Knopman, MD, a professor of neurology at the Mayo Clinic in Rochester, Minnesota. “That’s difficult both emotionally and therapeutically.” Here are five challenges the COVID-19 pandemic presents for people with aphasia and their caregivers and how to deal with them. RELATED: Tips for Stroke Treatment and Rehabilitation
1. Increased Vulnerability to COVID-19
The most common cause of aphasia is a stroke, which may cut the blood supply to cells in the brain’s language areas. Since most strokes happen in an elderly population, COVID-19 is a double whammy for people with aphasia. They need social interactions and therapy to help their recovery, but every social interaction increases the risk of exposure to the coronavirus. Furthermore, COVID-19 lockdowns can make the recovery longer and more difficult for new aphasia cases because they may not be able to start speech therapy. That’s a problem, because research, such as a study published in 2018 in Current Neurology and Neuroscience Reports, shows that early intervention is important for aphasia. “The longer the time span between brain injury and support, the harder it is to overcome,” says Darlene Williamson, a speech and language pathologist and the executive director of the Stroke Comeback Center in Vienna, Virginia, outside Washington, DC. “The longer out you are from your event, the more work you have to do to get better.” Dr. Knopman says, “Early intervention is crucial, since patients show great compensatory ability in the first six months. It slows down significantly in the ensuing years.”
2. Limited Access to Therapy
The speed and success of aphasia recovery is often determined by access to care. A study published in April 2017 in The Lancet found that intensive speech therapy (therapy for 10 hours or more per week for at least three weeks) significantly improved verbal communication. Prior to COVID-19, access to speech therapy usually meant that patients needed to live near a speech and language pathologist. Or they relied on a family member or caregiver to take them to therapy. With social distancing measures in place, access depends on a patient’s comfort with technology to participate in sessions that have moved online. “When you’re talking about a stroke population, you’re often talking about the elderly, who may not be comfortable with online platforms,” says Robert Goldfarb, PhD, a speech and language pathologist and a professor of communication sciences and disorders at Adelphi University on Long Island, NY. “And, some people may not even have internet access, or they get frustrated by a spotty connection.” And because of a shortage of speech and language pathologists who serve adults, it can be extremely difficult for people with a recent aphasia diagnosis to start therapy, especially minority patients. The American Speech-Language-Hearing Association (ASHA) has noted barriers to recovery, including a dearth of trained professionals providing therapy in African American communities.
3. Zoom and Online Platforms Aren’t the Most Therapeutic Environment
Effective communication is more than just words. We observe eyes, facial expressions, and body language, which most people with aphasia depend on to communicate. Most face-to-face conversations happen at a 45-degree angle, which is optimal for reading lips and body language, according to Dr. Goldfarb. But a straight-on conversation via Zoom on a two-dimensional screen eliminates the ability to pick up phonemic cues from the way someone’s lips move, putting people with aphasia at a disadvantage. “Zoom can get choppy; there are blips in the group setting; and it can be hard to hear well, which can be very challenging,” says Goldfarb. “But it’s the best we’ve got right now.” As a supplement to therapy via Zoom, a handful of apps are available to help continue recovery at home. Apps like Constant Therapy help patients practice and improve on their therapeutic exercises. The aphasia-advocacy organization Lingraphica offers four research-based apps for practicing speech and communication. Goldfarb suggests caregivers set up a therapeutic environment at home that encourages conversation. That means rearranging furniture to face each other rather than a television and taking time to engage the person with aphasia on topics that are important to them.
4. Long Stretches of Being Alone Can Increase Mental Health Issues and Impede Recovery
The frustration of not understanding or producing language because of aphasia leads to depressed moods and a tendency to shun visits from friends and family. That combination has a detrimental impact on quality of life, according to a study in the February 2017 Archives of Physical Medicine and Rehabilitation. The study concluded that the strength of someone’s circle of friends and family is the largest determinant in quality of life after the onset of aphasia. Furthermore, an international survey of speech-language pathologists noted that community engagement and meaningful relationships were key components to living successfully with aphasia. And yet, those relationships are particularly difficult to maintain during coronavirus lockdowns. Aphasia also heightens self-awareness, which makes people increasingly embarrassed by their speech deficit. “The quarantines have spared patients the anguish of going out in public,” says Knopman. “But that also means emotionally beneficial and mentally stimulating activities like rehab, group meetings, and adult day programs have ceased, as well as interactions with children and grandchildren.” To maintain group interaction and to find support, the Aphasia Recovery Connection has a Facebook support group where members meet 24/7. The Aphasia Hope Foundation also has a Facebook group and various activities for recovery and for engaging with others.
5. Caregivers On Edge
The COVID-19 lockdowns mean family and loved ones in the role of caregivers are more susceptible to burnout. Research shows that the difficulty in communicating with people in aphasia often upsets caregivers, as does the lack of time they have to socialize. Additionally, the 2020 Aphasia Caregiver Report issued by Lingraphica found that 89 percent of respondents say that their stress level has worsened since their loved one developed aphasia. Caregivers reported decreased emotional health, sleep quality, energy levels, and optimism. That downward emotional spiral may have a deleterious effect on the person with aphasia, since it can lead to feelings of resentment, distraction, or apathy. It also may make the caregiver less likely to facilitate therapeutic exercises, encourage the person with aphasia, or notice incremental progress. “For caregivers living with someone with expressive aphasia, the COVID-19 lockdowns are really hard,” says Knopman. “It’s a real test of patience to take care of someone with severely limited ability to speak or write, while not having the opportunity to visit other people.” To address that concern, Williamson’s Stroke Comeback Center has opened up online support groups and activities for caregivers and patients. “We’re able to offer immediate access to an online community of support that takes down geographical barriers and transportation time,” says Williamson. “That didn’t exist prior to the coronavirus.”
