Carolyn Baylor and colleagues published some excellent work revealing the challenges for spouses and other family members in communicating with persons with Parkinson’s disease.
Their publication: “Take Us Into Account”: Perspectives of Family Members of People with Parkinson’s Disease Regarding Speech-Language Pathology (SLP) Intervention, investigates the experiences of family members of people with Parkinson’s Disease (PD) and their recommendations for speech-language pathology services that incorporate their needs. (1)
People with Parkinson’s (PWP) often exhibit communication impairments, and the majority of PWP develop motor speech difficulties (dysarthria) with reduced volume and speech clarity as common symptoms. Speech intelligibility may further decline with disease progression, and/or sometimes be negatively impacted by deep brain stimulation (DBS), dystonias and dyskinesia. Cognitive-linguistic impairments such as word retrieval difficulties or processing delays are also common and impact participation in conversation which is often quick, and takes place in high and low demand settings where other distractions in the environment may interfere with communication effectiveness. Communication strategies which are a part of speech therapy behavioral approaches require from the individual near constant attention to speech rate, loudness or clarity, and this may compete with other cognitive demands including locomotion, and ultimately become fatiguing and burdensome to the PWP.
Yet, it’s not only the PWP who are affected by communication and other difficulties associated with PD, but living on a day to day basis with a person with a communication disorder can be a considerable burden for a spouse or other close family members.
A focus group of 17 individuals (twelve women and five men) were involved in the study, and all participants were the primary communication partners of person with PD. An analysis of responses collected revealed several themes which emerged.
Most individuals with PD had received speech-language pathology services in their past, typically either LSVT LOUD or SPEAK OUT! Hence, family members were well aware of the strategies of “thinking loud” and “speaking with intent.” As the disease progressed however, the most salient phenomena revealed in the data was the shift of managing communication strategies from the PWP to family members, indicating that while communication strategies were of some benefit earlier in PD, when the PWP could no longer independently employ communication strategies a shift to family members occurred and this quickly became burdensome for all involved with resulting tension in day to day communication.
The most common and salient problem that participants described is that the window during which the PWP could implement speech strategies with relative independence and effectiveness seemed to either be brief or had already passed by the time they had enrolled in speech therapy. Beyond that point, PWP had significant difficulties using the strategies. Thus, while several participants described benefit that their PWP had experienced from speech therapy, those descriptions were consistently paired with caveats defining the limited nature of such benefits.
The limited effectiveness of speech intelligibility techniques on a long-term basis was reflected by the frequent accounts of how frustrating communication with their PWP was—not only for the family member but also for the person with PD. This limited effectiveness does not reflect the therapy per se, but rather the complexity of the disease and the variability among patients. Some patients will retain speech therapy benefit longer as they will continue to self-monitor, perform home practice, or participate in after-therapy programs. But even in the face of this, the disease will still progress, and some, changes in cognition including memory adds to the burden of managing day to day activities for the patient, spouse and/or other family members.
A conclusion by the authors was that when SLPs provide families with either generic communication strategies or strategies that do not fit the individualized needs of their families, we may inadvertently be increasing the burden on families.
One salient recommendation, therefore, was to recognize that in a degenerative disease like Parkinson’s, people may be ready for different types and amounts of communication supports and services at different times in the disease.
My own take aways from this important research based on my own personal experience with a parent exeriencing Parkinson’s symptoms and over 30 years of providing services to individuals with PD and their families is as follows:
- Referral for speech therapy services should occur early on in the disease diagnosis when learning communication strategies and implementing them independently may yield the most benefit for the PWP.
- Interventions offered should not be a generic one size fits all, but rather, should match the stage of disease and goals of the person with PD and also the needs of their communication partners.
- Treatment options may include behavioral interventions (LSVT or Speak OUT!) but also device interventions like SpeechVive or amplification and periodic re-assessment of changing needs is essential.
- Communication difficulties don’t occur in isolation, but may need to be addressed while also assessing and managing cognitive-linguistic difficulties and swallowing impairments.
As therapists, we need to have a very broad understanding of the impact of Parkinson’s on the individual but also their spouse and other carepartners. Communication difficulties are among many relational changes and burdens the disease brings, and with our own continual learning and compassion we can in our own small way ease the burden the disease may bring to our patients and their loved ones. We can learn much from our patients and their families if we only ask and listen.
[1] “Take Us Into Account”: Perspectives of Family Members of People with Parkinson’s Disease Regarding Speech-Language Pathology (SLP) Interventions. Carolyn Baylor, J. Cook, and Megan J McAuliffe. https://doi.org/10.1044/2023_AJSLP-23-0027 American Journal of Speech-Language Pathology • 1–20 • Copyright © 2023 American Speech-Language-Hearing Association
Parkinson’s & Care-Partner Communication: It Takes Two Baby!
Some time ago I was invited by Patrick LoSasso, host of SmartXPD® to provide a presentation on Parkinson’s and Carepartner Communication. This is a topic I have also discussed at various Parkinson’s seminars becasue I believe it is so important. You can find a recording of the presentation on my website: https://voiceaerobicsdvd.com/
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