If you live with or care for someone with Parkinson’s disease (PD), you already know how much the disease can change daily life. What may surprise you is just how significantly it affects communication — and how much that burden is shared by spouses and family members. New research is shining a light on this often-overlooked challenge, and its findings have important implications for both carepartners and the clinicians who serve them.
The Research: Families Share the Communication Burden
A study by Baylor, Cook, and McAuliffe (2023), published in the American Journal of Speech-Language Pathology, investigated the experiences of 17 family members — all primary communication partners of persons with PD. The findings were both illuminating and sobering.
Most people with Parkinson’s (PWP) eventually develop dysarthria — a motor speech disorder characterized by reduced volume and declining speech clarity. As the disease progresses, these difficulties intensify and may be compounded by deep brain stimulation (DBS), dystonias, dyskinesia, and cognitive-linguistic changes such as word retrieval difficulties and slower processing.
For family members in the study, the impact was profound and consistent: as speech deteriorated, the responsibility for managing communication strategies shifted from the person with PD to the carepartner — and that shift became a significant source of stress and relational tension.
What Families Told Us: Key Themes
Several important patterns emerged from the study:
- A narrow window of benefit. Many families reported that by the time their loved one enrolled in speech therapy, the window for independently using communication strategies had already narrowed — or passed entirely. While participants described real benefits from programs like LSVT LOUD and SPEAK OUT!, those benefits were consistently qualified by their limited duration.
- Strategy burden shifts to carepartners. Techniques such as “thinking loud” and “speaking with intent” require sustained cognitive effort. As disease progression affects both motor speech and cognition, this demand competes with other daily tasks — and the responsibility for facilitating communication increasingly falls to family members.
- Frustration on both sides. Communication breakdowns were a daily source of frustration — not just for carepartners, but for persons with PD as well. The emotional toll of this ongoing challenge cannot be overstated.
- Generic strategies can increase burden. A critical finding from the authors: when SLPs provide families with communication strategies that don’t fit their individualized needs, we may inadvertently be adding to the burden rather than relieving it.
Clinical Takeaways: My Perspective After 30 Years
As a speech-language pathologist with over 30 years of experience serving individuals and families affected by Parkinson’s — and as someone who has lived this journey personally with a parent — this research resonates deeply. Here is what I believe it means for clinical practice:
- Refer early — before the window closes.
Speech therapy referrals should happen at or near diagnosis, when learning and independently implementing communication strategies yields the greatest benefit. Waiting until speech has significantly declined limits what behavioral therapy can accomplish.
- Individualize. Always.
A one-size-fits-all approach is not appropriate for a progressive, variable disease like PD. Intervention must be matched to the person’s current stage, their goals, their cognitive profile, and crucially — the needs and capacity of their communication partner.
- Expand the toolbox beyond behavioral strategies.
While LSVT LOUD and SPEAK OUT! are evidence-based starting points, clinicians should also consider device-based options such as SpeechVive or voice amplification as the disease progresses. Reassessment at regular intervals — not just at intake — is essential to ensure supports remain appropriate.
- Address the whole picture — speech, cognition, and swallowing together.
Communication difficulties in PD rarely occur in isolation. Motor speech changes frequently co-occur with cognitive-linguistic impairments and dysphagia. Effective SLP care requires assessing and managing all three domains — not treating each in a silo.
- Include carepartners as partners in care — from the start. Carepartners are not passive bystanders. They are active participants in daily communication, and their needs, limits, and emotional well-being must be part of the clinical conversation.
A Message for Carepartners
If you are supporting a loved one with Parkinson’s, please know this: the communication challenges you experience are real, they are recognized in the research literature, and you are not alone. The fatigue of serving as an interpreter, a facilitator, and an emotional anchor in every conversation is a legitimate burden — and one that deserves clinical attention.
If your loved one has not yet been referred to a speech-language pathologist, advocate for that referral now — not later. And when you meet with the SLP, bring your own voice to that conversation. Share what is hardest, what strategies aren’t working, and what you need.
The best care for someone with Parkinson’s is care that sees the whole family.
Final Thoughts for Clinicians
The complexity of Parkinson’s disease demands that we remain curious, compassionate, and humble practitioners. This research reminds us that our patients are teaching us constantly — if we ask and truly listen. The variability among patients, the unpredictability of disease progression, and the evolving needs of both PWP and their families require that we adapt our clinical approaches with the same dynamism that the disease itself demands.
Our role is not limited to treating the voice. It extends to easing the burden — for everyone in the room.
Reference
Baylor, C., Cook, J., & McAuliffe, M. J. (2023). “Take Us Into Account”: Perspectives of Family Members of People with Parkinson’s Disease Regarding Speech-Language Pathology (SLP) Interventions. American Journal of Speech-Language Pathology, 1–20. https://doi.org/10.1044/2023_AJSLP-23-002
My Mission: To enlist individuals in their treatment, and help them express their personality & spirit through voice. To educate and empower. Mary Spremulli, MA, CCC-SLP * FiTOUR® Group Exercise Instructor * Certified End of Life Specialist (CEOLS) * Voice Aerobics® A Whole Body Approach to Voice Practice