What Carepartners Need to Know
If you are caring for someone with Lewy Body Dementia (LBD) or Parkinson’s disease (PD), you have likely noticed that communication can be a moving target. Some days your person is talkative and engaged. Other days, finding words feels like reaching through fog. You may wonder: Is this the disease? Is it the medication? Am I doing something wrong?
The answer to that last question is almost always no. But understanding what is happening neurologically — and why — can help you become a more confident and effective communication partner. That is exactly what this post is about.
What Is Lewy Body Dementia?
Lewy Body Dementia (LBD) is one of the most common forms of progressive dementia, yet it remains one of the least understood — even among healthcare providers. At its core, LBD is caused by abnormal deposits of a protein called alpha-synuclein, which form clumps inside nerve cells in the brain. These deposits are called Lewy bodies, named after the neurologist who first identified them, Friedrich Lewy, in the early 1900s.
Lewy bodies disrupt brain cell function and communication, leading to a wide range of cognitive, physical, and behavioral changes. What makes LBD particularly complex is how it can appear — either on its own or alongside Parkinson’s disease.
LBD: Alone or Alongside Parkinson’s
There are two primary diagnoses under the LBD umbrella:
- Dementia with Lewy Bodies (DLB) is diagnosed when cognitive symptoms (memory loss, confusion, hallucinations) appear first or within one year of motor symptoms like tremor or rigidity.
- Parkinson’s Disease Dementia (PDD) is diagnosed when someone has had Parkinson’s disease for at least one year before significant cognitive decline develops.
Here is an important fact: the majority of people with Parkinson’s disease will eventually develop some degree of cognitive changes. Estimates suggest this occurs in up to 80% of individuals over time. For carepartners, this means that communication challenges may deepen as the disease progresses — even when speech was relatively unaffected in earlier stages.
What Connects Them
Whether a person has DLB or PDD, the underlying presence of Lewy bodies means similar challenges may arise:
- Fluctuating cognition — alertness and clarity that can vary dramatically within a single day
- Visual hallucinations — seeing things that are not there, often vivid and realistic
- Movement symptoms — slowness, stiffness, shuffling gait (more prominent in PDD)
- Executive dysfunction — difficulty planning, sequencing, and problem-solving
- Sleep disturbances — including REM sleep behavior disorder
Sensitivity to certain medications — especially antipsychotics
How Lewy Body and Parkinson’s Affect Communication
When Lewy bodies disrupt the brain’s networks — and when Parkinson’s motor symptoms are layered on top — the impact on speaking and understanding can be significant.
Voice and Speech Changes
In Parkinson’s disease, the voice often becomes softer (a condition called hypophonia), and speech may become faster or run together (festinating speech). Articulation may be reduced. These changes happen because the motor control for breathing and voice production is affected. The person may not even perceive how quiet they have become — their brain tells them they are speaking at a normal volume when they are not.
Word-Finding Difficulty
Both LBD and PD can affect the brain’s ability to retrieve words efficiently. You may notice your person pausing mid-sentence, substituting a related word, or simply going silent while searching for the right term. This is not a choice or a sign of giving up — it is a neurological phenomenon called anomia.
Slowed Processing
The brain’s processing speed slows in both LBD and PD. This means your person may need significantly more time to understand what you said and to formulate a response. What looks like ignoring you or confusion may simply be the brain doing its best — just more slowly. Conversational speech can become especially difficult when the cognitive demand for attention, language processing, formulation of a thought, and environmental distractions all pose challenge to limited cognitive resources.
Cognitive Fluctuations
One of the hallmarks of Lewy Body Dementia in particular is fluctuating cognition — periods of relative clarity interspersed with episodes of significant confusion, reduced alertness, or even unresponsiveness. These fluctuations can be dramatic and unpredictable. A person may seem “with it” one hour and completely unreachable the next. This is the disease at work, not willfulness.
Carepartner Communication Strategies
The good news: how you communicate matters enormously. With the right strategies, you can reduce frustration for both of you, support your person’s confidence, and make successful connection more possible every day. These five strategy areas are drawn directly from evidence-based speech-language pathology practice.
- Set Up for Success
The environment you create before you even begin speaking can make or break a conversation.
✔ Gain attention before speaking — say your person’s name, make eye contact
✔ Speak face-to-face at close distance
✔ Reduce background noise — turn off the TV, radio, or minimize competing conversations
✔ Ensure good lighting so your person can read your facial expressions and lip movements
Why? A strong start improves attention and understanding. Don’t skip this step — it sets the tone for everything that follows.
- Slow Down and Simplify
This is one of the most powerful — and most challenging — adjustments for carepartners to make.
✔ Use short sentences
✔ Present one idea or question at a time
✔ Allow extra time for response — aim for a 5 to 10 second pause before repeating or rephrasing
✔ If repetition is needed, rephrase rather than simply repeating the same words louder
Why? Extra processing time reduces pressure and significantly improves accuracy. Silence is not failure — it is the brain working.
- Support Word Finding
When your person is struggling to find a word, your instinct may be to jump in and finish the sentence. Sometimes that helps. But there are other approaches worth trying.
✔ Establish the topic. Offer gentle clues — “what or who are you talking about?” the first sound of the word, or the category it belongs to
✔ Encourage describing the item if the word will not come (“Tell me what it does”)
✔ Offer simple choices rather than open-ended questions (“Would you like soup or a sandwich?”)
✔ Accept ‘close enough’ words when the meaning is clear
Why? Reducing the demand lowers frustration and keeps the conversation moving forward.
- Support Voice and Clarity
Many individuals with PD and LBD benefit from encouragement to use a louder, stronger voice — but the way you deliver that cue matters.
✔ Use a positive, simple cue: “Big voice” or “Strong voice” — not “Speak up” or “You’re too quiet”
✔ Ask for repetition only when truly necessary — asking too often can be discouraging
✔ Repeat back what you understood to confirm accuracy (“I heard you said, you want to call Sarah — is that right?”)
Why? Clear, positive feedback improves success without increasing stress. Your tone is part of the message.
- Repair and Maintain Connection
Communication breakdowns will happen. What matters most is how you handle them — together.
✔ Summarize longer conversations so your person can track what was discussed
✔ Clarify what you understood and gently ask about the rest
✔ Stay calm — anxiety is contagious, and calm is too
✔ Recognize that communication may vary significantly from day to day — and even hour to hour
Why? Successful communication depends on teamwork and flexibility. You do not need to get it perfect. You need to stay connected.
** Do you wear hearing aids? When carepartners have a hearing loss but do NOT wear their hearing aids, they are compounding the communication difficulties already present, as well as risking the impact of hearing loss to their own cognitive functioning.
Daily Reminder for Carepartners
The goal is not perfect speech — it is successful connection and reduced frustration. Consistency with these strategies will help maintain communication and support independence and dignity at home. You do not need to do everything perfectly. You simply need to keep showing up — patiently, attentively, and with love. Enlist the help of a speech-language pathologist who can more formally assess comunication and help to develop additonal strategies relevent to your environment.
A Note for Fellow SLP Clinicians
Speech-language pathologist can help by creating individualized communication support guides for each family — tailored to the specific disease stage, and home environment. The investment may help to reduce your patient’s communication frustration and facilitate carepartner confidence.Carepartner education and training is one of the most important interventions we offer in our work with individuals with PD and LBD. The strategies provided here can be incorporated into caregiver education sessions — simplified for home use, and grounded in evidence. When carepartners have a better understanding of the neurological basis for communication changes, they may be able to shift from frustration to compassion for themselv. That shift changes everything.
Voice Aerobics Songbirds© is guided speech practice set in music. It can be a fun, less traditional way to practice and stimulate speech and voice use. Download it from one of our streaming partners: https://voiceaerobicsdvd.com/product/voice-aerobics-songbirds/
Lindeberg, E., Samuelsson, C., & Walshe, M. (2023). Conversations in dementia with Lewy bodies: Resources and barriers in communication. International Journal of Language & Communication Disorders, 58(2), 343–357. https://doi.org/10.1111/1460-6984.12799
Souchay, C., Dubourg, E., Lorenzi, C., & Moulin, C. J. A. (2023). The cognitive and language profile of dementia with Lewy bodies. American Journal of Speech-Language Pathology, 32(4), 1496–1510. https://doi.org/10.1044/2023_AJSLP-22-00279
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
Voice Aerobics the heART and Science of Voice Practice