The Crucial Role of Coaching Caregivers for Individuals with Communication Differences

Communication is fundamental to the human experience whether it is verbal or not. Yet, for many individuals with aphasia, traumatic brain injuries, or autism spectrum disorders expressing themselves traditionally can be an everyday struggle. While direct therapy is the traditional approach, there’s a growing recognition of the need to coach caregivers- unsung heroes who constantly support their loved ones daily. This focus shift recognizes that communication happens in everyday life, not just in the therapy room, and that empowering caregivers can lead to more significant and lasting improvements. More importantly, this leads to a better quality of life for the entire family. 

My journey into wanting to provide caregiver coaching began about a decade ago. While visiting Kentucky, I was sitting across from my Grandmother at one of the big tables in Cracker Barrell for our after-church lunch. Our family has been gathering for lunch after church services my entire life, sometimes in restaurants but usually at my Grandmother’s house. As I was holding my wriggling one-year-old in the chaotic restaurant with clanging plates and busily cluttered walls I clenched my body in response to the confusion and frustration that was taking place with the waiter and my grandparents across the table. 

My grandfather was ordering for my grandmother and it wasn’t going well. He offered an option, and my Grandmother would disagree with the only word she could consistently use, “no,” and her responses were becoming more animated and insistent. She had recently and suddenly lost her ability to communicate verbally after coming out of surgery to remove a malignant tumor in her brain. The surgery impacted such a large portion of her brain that her ability to function at all was considered a success. However, the interactions I was witnessing across from the table were anything but successful for her or my grandfather. She was becoming teary-eyed and exasperated that the wrong food choices were being given. The young waiter was growing uncomfortable with the emotions at our table and a sinking pulling of my heart was settling in at the realization that my grandmother who was once so precisely articulate was completely unable to communicate and that this level of frustration was becoming her default emotion. I also watched as the attempts my aunts and especially my grandfather made to guess what she wanted to order for lunch were upsetting her even more. I am not blaming him, but my grandfather was also becoming less patient with the situation and growing embarrassed by the scene. A heavy cloud of sorrow and unfairness hung over that table and the last days of her life. 

That specific memory in the restaurant is etched in my mind with clarity. I had already been a speech-language pathologist for a few years by then but when this sort of thing happens in your own family with someone so important personally all the therapy training in the world seems silly and useless. Overwhelming emotions for my grandmother but also her husband, her daughters, and even myself permeated. My aunts had requested speech therapy support at the hospital before discharge but were told that since she was in Hospice and therefore terminal then she wouldn’t qualify.

Looking back on this scene now with the experiences I’ve had with many more families in similar situations I think perhaps they were right, my grandmother probably wouldn’t have benefitted from direct speech therapy. However, her last months would have been greatly improved if her husband and daughters had been able to reach out to someone for support in how to navigate communicating with her. If we had had someone to call or a hand to hold that had walked in these shoes before the experience could have been so different. So, ever since this moment, I have remembered this experience with every family I have worked with. I’ve learned that if the family is empowered then everyone including the loved one with the communication difficulty benefits. No magic ever happens in the speech room, the real magic happens out in the world. 

Why Caregiver Coaching Matters 

1. Continuous Support: There is only one me but the family is there all the other hours of the week. Caregivers provide constant practice and reinforcement. If I’m not helping the family as a unit find more peace then what purpose am I doing? 

2. Personalized Strategies: Caregivers know their loved ones best and often will think of ideas to incorporate my suggestions in ways I never considered. 

3. Reduced Frustration: This is my biggest reason. When caregivers are equipped with the right tools and provided with understanding empathy for their unique situation then everyone has smoother interactions and less stress for both parties. 

4. Empowerment: Coaching helps caregivers feel more confident and capable in their abilities. 

The Current Insurance Model Dilemma 

Despite the clear benefits, most insurance models don’t adequately support caregiver coaching. 

1. Focused on Direct Treatment: Insurance companies typically cover direct therapy with the patient and sometimes offer coaching to the family as part of that model if you're lucky. This is usually not heavily weighted on family education and is operating on an outdated model of therapy. 

2. Limited Session Numbers: Restricted therapy sessions make it challenging to allocate time for caregiver education and the model of dismissing/discharging a client ignores the continuing needs of the family. 

3. Outcome Measures: Insurance often requires measurable patient outcomes, which may not capture the long-term benefits of caregiver coaching. Traditional assessments are questionable measurements of the real-life improvements in daily life that reduce the burden on caregivers.

4. Lack of Recognition: With not being a standalone billable service, this means that even when professionals are coaching families it’s often on their own time and/or it may be unpaid. 

5. Standardization Challenges: Coaching is challenging for insurance companies to set clear guidelines for coverage. The highly individualized nature of this approach doesn't fit neatly into existing insurance models. 

I’ve always wondered how in the world can we even measure communication in general. Further, how can we measure the moments of joy family members share? 

The Way Forward 

I challenge you to consider a way to better support families dealing with communication difficulties: 

1. Advocacy: Push for insurance reform to recognize coaching outside of direct patient therapy and unrelated to outcomes. Make sure the right professionals are available. 

2. Research: Conduct studies demonstrating the long-term benefits of caregiver coaching and recognize and utilize existing studies to change the model. 

3. Education: Raise awareness among healthcare providers and families about the importance of not only caregiver involvement but caregiver empowerment. 

4. Innovation: My favorite is to develop new models of care that integrate caregiver coaching into standard treatment plans. Don’t send home anyone with a communication loss without a person for the family to contact for support and guidance. 

Coaching caregivers is not just beneficial; it’s essential and a basic function of humanity to maximize the quality of life for individuals with communication difficulties. Speech-language pathologists are well suited to lead this charge, armed with the expertise and compassion needed to empower caregivers and transform lives.