When Communication Fades: A Caregiver’s Challenge

Discover ways to cope and connect when communication breaks down

Paul Wynn,

AARP

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Published August 29, 2025

two people showing challenges of communication

AARP (Courtesy Seymour and Pederson)

When words began to slip away from Jackie Pederson, her wife, Beth Seymour, realized their lives were changing forever. What started as minor lapses in conversation, pauses to find the right word and a growing quietness was eventually diagnosed in 2021 as primary progressive aphasia, a rare and devastating form of dementia that steals language long before memory.

Since then, Seymour has devoted herself to finding new ways to communicate with Pederson, a retired physical therapist, by seeking answers from neurologists, second opinions and even clinical studies before settling into speech-language therapy and daily strategies to maintain connection.

As Pederson’s condition progressed, the couple has relied on tools like iPads with speech software, yes-and-no cards, whiteboards and even picture dictionaries to help them communicate. Over time, however, Pederson’s ability to use these aids has diminished, forcing Seymour and the paid caregivers she’s brought into their home in Green Bay, Wisconsin, to rely more on interpreting nonverbal expressions, gestures and smiles.

Seymour admits that one-sided conversations and the loss of shared dialogue are emotionally draining, but she’s found ways to adapt. They still walk, travel when possible and play simple games, cherishing moments of connection even as language slips away. With professional support and the help of paid caregivers, Seymour is learning to balance her own well-being while ensuring her wife remains comfortable and engaged. “For the most part, she seems happy, and that’s what I hold on to,” says Seymour.

Quiet struggle with communication

Communication breakdowns are one of the greatest challenges family caregivers face, with 60 percent reporting that these struggles make their role more difficult, according to a new national poll from the American Speech-Language-Hearing Association (ASHA) and YouGov. The survey highlights how miscommunication, whether through difficulty understanding needs, repeated instructions or emotional outbursts, takes a toll on caregivers’ mental health, leading many to feel frustrated, overwhelmed and isolated.

Nearly half of caregivers said these challenges even limit public interactions, while more than half believe daily life would be far easier if communication could improve. ASHA notes that most caregivers reported positive results when their loved ones received professional support from speech-language pathologists. “Making caregivers’ lives a little bit easier, by giving them strategies to help improve communication between themselves and those in their care, is a critical way audiologists and speech-language pathologists can help,” says ASHA president Bernadette Mayfield-Clarke.

Breaking through the silence

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Barry Appelbaum has spent 14 years navigating the profound communication challenges caused by his wife Susanne’s stroke, which left her with both apraxia and aphasia, compounded by cognitive decline. Apraxia is a brain disorder that hinders planning and coordinating movements, often developing after a stroke or brain injury. Aphasia is a language disorder resulting from damage to the brain that impairs a person’s ability to speak, understand, read and write.

While she often attempts to answer questions, her words rarely match her intentions, creating a constant “game of charades.” “When I ask her if she wants coffee or tea, she may say ‘tea,’ but she actually means coffee,” says Appelbaum. “Yet in her mind, she believes she said it correctly. This makes even simple exchanges confusing and frustrating.”

The couple’s conversational bond has largely been lost. Appelbaum describes the silence in their home in Lancaster, Pennsylvania, as “deafening,” a painful absence for a man who thrives on connection as a salesman and lifelong people person. Over time, Appelbaum has improved interaction by relying on pointing, menus and repetition, but daily communication remains unpredictable.

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For Appelbaum, caregiving now means balancing his wife’s needs for safety and stimulation with his own needs for social interaction. He continues to draw support from aphasia programs, stroke caregiver groups and the Well Spouse Association, a national group for spousal caregivers. Still, he admits that retirement and aging raise new questions about how long he can sustain this role without losing himself in the silence.

8 Ways to Work Through Communication Barriers

There are several ways for caregivers to help address breakdowns in communication. Sarah E. Wallace, professor and director of the master’s degree program in speech-language pathology at the University of Pittsburgh’s department of communication science and disorders, recommends trying these eight strategies, drawing on her own clinical and research work, and from lessons she has learned from the people at the Pittsburgh Aphasia Community Center.

“Caregivers and their loved ones have the opportunity to be true partners in speech-language therapy, by working together to make communication more accessible, support independence and help each other stay connected every day,” says Wallace.

1. Use multiple ways to communicate.

One of the most effective strategies for supporting someone with aphasia is to use various ways to communicate. Instead of relying on speech alone, caregivers can reinforce conversations with visual aids such as gestures, pictures or drawings, or by writing down key words. Texting can also become more accessible when paired with emojis or photos, which help reduce the amount of language the person needs to process.

2. Support reading and writing.

Written materials can be made more accessible by simplifying their format with larger fonts, adding more white space, shortening sentences and including supportive images. Technology can also be a powerful aid, like Kindle’s built-in read-aloud and adjustable text settings, helping to make reading less overwhelming. Beyond these tools, reading together can be a meaningful activity for caregivers, whether it’s sharing a book, an article or even a picture-based book that ties into personal experiences and memories.

3. Adapt phone and video calls.

Whenever possible, use video-calling platforms like FaceTime and Zoom instead of voice-only calls; the visual cues and gestures they allow can greatly support understanding. It is helpful to slow the pace of conversation, not by stretching out words but by incorporating longer pauses to give the person time to process information. Caregivers should also be mindful of silence, allowing extra time for responses without feeling the need to fill the gaps in conversation immediately.

4. Encourage independence with technology.

Caregivers can foster greater independence by introducing tools that make communication easier and more engaging. Apps with preprogrammed phrases can help loved ones express their needs and participate in conversations more confidently, while text-to-speech or “read aloud” functions on phones, tablets or computers allow them to both see and hear messages for better understanding. These supports reduce frustration and open more opportunities for connection.

5. Focus on communication, not perfection.

When interacting with someone with communication challenges, it is important to focus on their intent and meaning rather than expecting perfect words. Pay attention to keywords, gestures and facial expressions. Practicing active listening, such as repeating back, clarifying and checking for understanding, can help ensure accurate communication. Caregivers should also accept approximations, meeting the person halfway if they say only part of a word or mispronounce it, emphasizing understanding over precision.

6. Acknowledge competence.

It is important to explicitly affirm that the person is still intelligent and engaged, even if they struggle to express themselves, using a phrase like “I know you know this.” This acknowledgment helps protect their dignity and can significantly reduce frustration, reinforcing a sense of respect and confidence in their abilities.

7. Partner with a speech therapist.

Caregivers are essential partners during recovery, working closely with speech therapists to support progress. They can do this by learning about the specific communication disorder and its strategies, practicing therapeutic activities recommended by the therapist, and reinforcing skills through consistent, patient repetition. By staying engaged and creatively weaving practice into daily routines, such as naming objects, using apps and smart devices or using alternative communication tools, caregivers help ensure that therapy strategies are maintained and carried over into daily living.

8. Advocate for continued therapy.

Access to speech-language therapy is often limited and may end sooner than needed, leaving individuals without ongoing support. Ask your insurance company for more sessions and get your doctor to support your requests. If that doesn’t work, community-based groups, including aphasia support groups, provide opportunities for continued improvement even years after a stroke or disabling condition. Group therapy, particularly peer-led activities, offers a lower-cost option for long-term support while fostering social connection and a sense of community.

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Paul Wynn, a veteran health care writer, has spent over a decade immersed in the caregiving community, both as a family caregiver and as a journalist covering caregiving issues for national publications.