Learn how to communicate better with people living with Lewy body dementia (LBD). LBD is the second most common progressive dementia, after Alzheimer’s disease. It’s very difficult to diagnose and is often misdiagnosed as Alzheimer’s or Parkinson’s disease, depending on which symptoms are present at the time. Communication can be challenging for a number of reasons. Read on to learn more about LBD and communication.
Free DIRECT download: Communication tips for LBD (patient handout). (Email subscribers get free access to all the resources in the Free Subscription Library.)
Outline:
- What is Lewy body dementia (LBD)?
- What are the communication challenges?
- Strategies to improve communication in LBD.
- Learn more about Lewy body dementia.
- Related Eat, Speak, & Think posts.
What is Lewy body dementia?
Lewy body dementia (LBD) is the second-most common form of dementia, and it is frequently misdiagnosed as Parkinson’s disease or Alzheimer’s disease until the more advanced symptoms appear. It’s caused by the accumulation of abnormal protein formations throughout the cerebral cortex, which causes brain cells to work improperly or be destroyed.
Check out this 4-minute video explaining LBD and why it’s so often misdiagnosed.
The Lewy Body Dementia Association provides an extensive list of symptoms, which include:
- Dementia.
- Fluctuations in alertness, attention, and concentration.
- Hallucinations, delusions, depression, anxiety, and apathy.
- Sleep disorders.
- Impaired autonomic functions like temperature, blood pressure, and constipation.
- Motor impairment, including slowness, rigidity, shuffling gait, and tremor.
What are the communication challenges?
A person with LBD may have difficulty communicating due to:
- Cognitive impairment, particularly memory and executive function.
- Language impairment.
- Hallucinations, often involving animals and people with a scary edge to them.
- Delusions.
- Depression.
- Anxiety.
- Low alertness level.
- Low motivation or apathy.
Strategies to improve communication in LBD
Set the stage for successful communication
We communicate as much with our facial expressions, body language, eye movements, and tone of voice as we do with the words we choose to speak. Do what you can to set your communication partner up for success.
For instance:
- Talk face-to-face, at eye level.
- Turn off background noise.
- Use good lighting so you can see each other.
- Make sure you both are wearing any necessary glasses or hearing aids.
Present a calm demeanor
Ever notice that you get angry or anxious when you talk to someone who is exuding anger or anxiety? We tend to mirror what we sense in others. You can encourage calm interactions by the way you present yourself.
- Maintain a calm expression
- Keep a relaxed body posture.
- Use a pleasant tone of voice.
- Speak only as loud as is necessary. It’s fine to ask if you’re talking at a comfortable level.
A reader commented in a Facebook group that people with dementia may not understand what you say, but they will understand some of what you mean from your body language and tone of voice. I think that’s an excellent point!
This reminds me of a study done with people living with Alzheimer’s disease, which used videos to elicit feelings of happiness or sadness. Even when they couldn’t remember a single fact about the video (or even that they had seen a video), they still reported feeling happy or sad 30 minutes later.
Make your speech easier to understand
People have a habit of dumbing down their language and speaking louder when they’re talking to someone who appears to have a cognitive impairment. Even if it’s done with good intentions, it can still be insulting and demeaning.
But there are ways to make your speech easier to understand while still talking to the other person like the adult they are. In addition to the tips above, also try these.
- Use specific words and names, rather than vague terms.
- When you pause, pause for an extra second or two.
Signs that someone may be having trouble understanding:
- Leaning forward.
- Watching your mouth.
- Furrowing the eyebrows or looking confused.
- Responding to your comments by saying the wrong things.
Check for understanding by asking questions in a conversational way (rather than an inquisitional way).
Simplify your speech
If your communication partner is having trouble understanding you, here are some things you can try.
- Use shorter sentences and fewer words.
- Repeat what you said using the same words, but a little more slowly.
- Say it in a different way.
- Point to what you’re talking about.
- Write down key words.
- Ask Yes-No questions rather than WH-questions (who, what, where, when, why, how).
- Offer a choice of two.
Hallucinating, delusional, disoriented, or agitated?
I learned this advice from one of the LBDA’s videos, which you can watch below.
When someone is in the midst of a hallucination or other disoriented state, their brains are making it just as real to them as your reality is to you. Trying to reason with them or re-orient them typically does not work and can make the situation worse.
Instead of trying to reason with someone, try to:
- Remember to stay calm in body, facial expression, and tone of voice.
- Step into their reality.
- Validate their concerns.
- Provide reassurance.
- Offer to help.
- Gently try to distract or redirect. Or, go along with it.
- Don’t argue or try to force them to see things your way.
Some people are aware they hallucinate. If it doesn’t cause distress, when they are hallucinating, you could say that this is a time when their eyes are playing tricks on them.
Learn more about Lewy body dementia
LBDA offers a wealth of information
The Lewy Body Dementia Association is an excellent source of information for healthcare providers, caregivers, and people living with LBD.
Here are some of the offerings:
- Lewy Line (ask your questions): 800-539-9767.
- Learn about LBD symptoms and causes.
- Download free publications.
- Read personal stories (or submit one).
- Find in-person support groups.
- Connect via social: Facebook page and groups, LinkedIn, and Twitter.
Free 44-page book from the National Institutes of Health
The National Institute on Aging at the NIH offers free publications that you can download or have mailed to you, including a 44-page book on Lewy body dementia and Parksinson’s disease dementia.
YouTube videos
The LBDA has an extensive selection of videos on their YouTube channel, including:
- Webinars about diagnosis and symptom management.
- A presentation on dealing with behavioral challenges.
- First-hand accounts.
- And more!
Teepa Snow talks about Lewy body dementia in this quick demonstration.
Teepa Snow gives a longer interview on the Dementia Care Partner Talk Show.
Robin Williams
Robin Williams is perhaps the most well-known person who has been diagnosed with Lewy body dementia. His wife published a letter in which she chronicles just how devastating their experience was. He never received a diagnosis while he was alive.
Robin’s Wish shares “the story of what really happened to one of the greatest entertainers of all time – and what his mind was fighting.” Released in September 2020, here is the trailer:
Related Eat, Speak, & Think posts
- Massive resource list for Alzheimer’s disease and 17 related conditions.
- 18 free cognitive assessment tools (many more in the comments).
- How to plan cognitive therapy with 6 questions.
Free DIRECT download: Communication tips for LBD (patient handout). (Email subscribers get free access to all the resources in the Free Subscription Library.)
Featured image by Matthias Zomer from Pexels.
Lisa earned her M.A. in Speech-Language Pathology from the University of Maryland, College Park and her M.A. in Linguistics from the University of California, San Diego.
She participated in research studies with the National Institute on Deafness and other Communication Disorders (NIDCD) and the University of Maryland in the areas of aphasia, Parkinson’s Disease, epilepsy, and fluency disorders.
Lisa has been working as a medical speech-language pathologist since 2008. She has a strong passion for evidence-based assessment and therapy, having earned five ASHA Awards for Professional Participation in Continuing Education.
She launched EatSpeakThink.com in June 2018 to help other clinicians be more successful working in home health, as well as to provide strategies and resources to people living with problems eating, speaking, or thinking.
A reader in a Facebook group mentioned one strategy if someone with LBD is talking to you and thinks you are the “bad” version of yourself. Walk out of the room and call the person to talk over the phone (no video). Over the phone, the person may recognize you and be able to talk. Sometimes the hallucination may end if you walk back into the room while on the phone.
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