Communication Breakdowns Take Toll on Family Caregivers, Especially for Older Adults with Chronic Illness

If you’re caring for an older parent with dementia, stroke-related disabilities, or Parkinson’s disease, you're not alone—and you may be facing a silent burden many don’t talk about: the struggle to communicate.

A new national survey commissioned by the American Speech-Language-Hearing Association (ASHA) reveals that 60% of caregivers of individuals with communication challenges—many of them older adults—say communication breakdowns make their caregiving role significantly harder.

The poll, conducted by YouGov and released at the start of National Speech-Language-Hearing Month, shines a spotlight on the daily frustrations experienced by family caregivers and the older loved ones they support.

Caregivers are often doing everything—managing medications, meals, and finances—but the emotional toll of not being able to communicate with someone you love is devastating,” said Dr. Bernadette Mayfield-Clarke, ASHA President. “This survey shows we must do more to support these families.

Communication Challenges Tied to Chronic Illness and Aging

Millions of older Americans suffer from communication disorders, often stemming from chronic health conditions such as dementia, strokes, Parkinson’s disease, and cancers of the head and neck. These disorders also frequently accompany age-related cognitive and hearing decline.

In these situations, caregivers say they're frequently left guessing what their loved one wants or needs, triggering anger, sadness, and even dangerous misunderstandings. According to the survey:

• 53% of caregivers report emotional strain, including feeling depressed, overwhelmed, or helpless.
• Nearly half avoid social activities due to the embarrassment or stress of public communication issues.
• 39 hours per week is the average time caregivers devote to providing care—equal to a full-time job.

It’s heartbreaking,” said one respondent. “I love my father dearly, but when he can't find the words or mishears me, we both end up frustrated and exhausted.

Communication in Professional Long-Term Care

When families can no longer manage care alone, professional caregivers in home care, assisted living, memory care, and nursing homes often become the best option. These care providers typically have staff trained in communicating with individuals who have cognitive, speech, and hearing impairments.

Whether it’s through the use of simplified language, visual cues, or tools like communication boards and hearing assistance devices, trained caregivers can reduce the confusion and distress that communication disorders cause. That support helps maintain the dignity and emotional well-being of older adults—something family caregivers often struggle to manage on their own.

However, access to this level of care comes at a price—and the cost is rising.

Long-Term Care Is Expensive—Unless You Plan Ahead

According to the LTC News survey of long-term care costs nationwide, the national median cost for assisted living now approaches $5,000 per month (not counting surcharges, which can add another $2000 a month), while nursing home care often tops $11,000 monthly, much more in some locations. These expenses can quickly drain savings unless a plan is in place.

In-home caregivers are often preferred, but the average cost for a 44-hour week of in-home care will run over $5500 a month.

All these costs are increasing dramatically due to labor shortages and higher demand for long-term care services.

Health insurance and Medicare do not cover most long-term care services outside of short-term skilled care. Medicaid will pay for custodial and skilled long-term care for those with limited financial resources. Otherwise, that leaves families to pay out of pocket—unless they have Long-Term Care Insurance.

The best time to buy Long-Term Care Insurance is when you're healthy, before retirement. Most people purchase coverage between ages 47 and 67. Once you need care, it's too late to get coverage.

LTC Insurance can help ensure you or a loved one has access to high-quality care providers who are trained and equipped to manage communication disorders. It protects retirement savings and eases the burden on family caregivers.

Finding Quality Caregivers and Facilities That Communicate

Not all care is created equal. When you're looking for support, especially for a loved one with communication issues, it’s vital to choose professionals who understand how to interact clearly and compassionately with those facing cognitive or sensory challenges.

That’s where the LTC News Caregiver Directory becomes an invaluable tool. As the largest national database of caregivers, home health agencies, senior living communities, assisted living, memory care, and nursing homes in the U.S., the directory allows families to:

• Search for facilities or agencies near you with trained staff who specialize in speech, cognitive, or dementia-related care.
• Find services nearby based on location, care level, and special needs.
• Verify quality and credentials to ensure your loved one is receiving safe, professional support.

"After my dad’s stroke, his ability to speak and understand us changed overnight. Finding someone in Terre Haute, Indiana who truly understood how to work with his communication challenges felt overwhelming—until I found the LTC News Caregiver Directory. It gave me real choices, not just names. For the first time, I felt hopeful—and more importantly, supported," said Mary Ann, 61, from Woodgate, Indiana.

LTC News partnering with Amada Senior Care ensures that your loved ones receive quality care based on their needs and preferences without worrying about securing their LTC Insurance benefits- Filing a Long-Term Care Insurance Claim.

Whether you're exploring home care, considering assisted living, or transitioning to memory care, this directory helps match your needs to providers who prioritize clear and compassionate communication.

Health Care Still Needs to Catch Up

The ASHA survey also found that healthcare professionals often fail to adapt their communication methods to patients with impairments:

• Just 40% of caregivers said medical professionals asked their loved one how they preferred to communicate.
• Nearly 30% said the communication from doctors was often unclear or confusing to the care recipient.

This disconnect leaves many older adults unable to fully participate in their own medical decisions.

Effective communication is a human right,” Mayfield-Clarke said. “It applies to appointment settings, too.

Support and Professional Help Make a Difference

Despite the challenges, caregivers who sought help from audiologists and speech-language pathologists report noticeable improvements:

• 65% said audiology services improved daily life "a great deal" or "a good amount."
• 77% saw benefits from speech-language pathology services.
• 91% recommend seeing a specialist.

These services not only help care recipients regain function—they also help caregivers feel supported and empowered.

Language Barriers Compound Communication Challenges

While many communication issues stem from medical conditions such as dementia, stroke, or hearing loss, language barriers can also create significant obstacles in caregiving. In today’s increasingly diverse care environments, both care recipients and caregivers may speak different primary languages, leading to misunderstandings, confusion, and stress on both sides.

A care recipient with limited English proficiency—or a caregiver unfamiliar with the care recipient’s native language—may struggle to express needs, understand instructions, or follow medical recommendations. This can delay care, reduce trust, and even contribute to medical errors.

It’s not just about health issues—language can be a barrier too,” said Matt McCann, a long-term care planning specialist. “When selecting a caregiver or facility, it’s critical to find providers who can truly connect with the person they’re caring for—both medically and culturally.

You can search for providers who speak a variety of languages and offer culturally competent services. Ensuring your loved one can understand—and be understood—is a key part of quality long-term care.

A Plan Makes Caregiving Easier

Family caregivers are doing heroic work under intense pressure. But they don’t have to do it alone. Support is available—from trained professionals, insurance planning, and accessible care directories.

If you're in your 40s, 50s, or early 60s, now is the time to plan for your own future extended care. And if you’re caring for a parent or spouse today, know that communication support and quality care is within reach—if you know where to look.