Breakfast was going well. You were having a conversation. There may even have been a little teasing about the toast.
Then you handed the person you care for a shirt, and they just held it. You explained what to do, but they weren't following you. Their eyes kept closing.
You were just talking. What changed?
An imagined morning like this is where we begin Episode 12 of Navigating Dementia. With Lewy body dementia, changes in attention, sleep, movement, and what someone sees can leave families wondering how much help to offer and when to be concerned.
And if you haven't received a diagnosis yet, you may be trying to explain changes that don't look like the memory loss you expected.
Lewy body dementia may look different from what you expected
When we hear “dementia,” many of us think about forgetting. But with Lewy body dementia, early difficulties may be more noticeable in attention, planning, or understanding visual information. Memory can change too, but it may not be the first concern a family brings to the doctor.
Lewy body dementia includes two related diagnoses: dementia with Lewy bodies and Parkinson's disease dementia. Both can affect thinking, movement, sleep, and behavior. The timing of thinking changes in relation to established Parkinson's symptoms helps clinicians distinguish them.
Recognizing something in this article doesn't establish a diagnosis. Different conditions can cause similar changes, and some causes may be treatable. What you've noticed is still worth bringing to a healthcare professional.
Try describing what's different from the person's usual self: “They used to get dressed on their own. Now there are mornings when they need a lot of help.”
That gives the clinician more to work with than “Something seems wrong,” even if you don't know the medical words yet.
Why can alertness change during the day?
The person who followed your conversation at breakfast may have much more trouble paying attention later. These shifts are called cognitive fluctuations.
That can be confusing even when you know they're possible. You remember what the person did earlier, so naturally, you expect them to be able to do it again.
You may keep explaining the shirt because you're trying to help. But if staying alert is difficult, more instructions may be hard to follow.
Try pausing, noticing how awake they seem, and offering help with one part of the task. If their care team has helped you understand this as a familiar pattern, you may be able to adjust the timing when your schedule allows.
A sudden change needs medical attention. Don't assume new confusion is an expected fluctuation. Seek immediate medical help for sudden confusion. If someone is suddenly difficult to wake, collapses, or has signs of a stroke, call emergency services.
When Lewy body dementia changes sleep for both of you
There may be long stretches when the person is awake, and you're awake right along with them. Later, when they finally sleep, you're looking at everything you haven't been able to do.
Someone suggests, “Just sleep when they sleep.”
But when are you supposed to work, make calls, or eat something besides the toast you grabbed this morning?
Even when you lie down, you may still be listening. Was that the bed? Are they getting up? Do they need me?
Sleep problems in Lewy body dementia can include difficulty falling or staying asleep and pronounced daytime sleepiness. Some people are sleepy during the day even after apparently adequate nighttime sleep. There isn't one fixed pattern everyone follows.
Tell the care team what you're seeing, including how the person responds when you speak to them. Sleeping and reduced alertness aren't always easy to distinguish. Someone who suddenly can't be woken normally needs emergency help.
For an ongoing pattern, ask what to do when sleep interferes with meals, fluids, or medications. Whether to wake someone for a medication depends on their prescription and care plan. Don't skip, double, or change doses on your own.
Pain, sleep apnea, and medication effects may also contribute. A sleep assessment or medication review may identify something that can be addressed.
And include your own sleep in that conversation. “They're awake much of the night, and I'm awake with them. I'm not getting enough rest to manage safely.”
You don't need to make that sound more clinical.
Acting out dreams deserves attention too
REM sleep behavior disorder can cause someone to call out, kick, or swing an arm while dreaming. It can appear before other Lewy body symptoms, although it doesn't establish the diagnosis by itself.
Tell the clinician if this happens. Ask about assessment and safer sleeping arrangements, particularly if either person could be injured. Moving sharp or breakable objects away from the bed is one starting point.
Check with a clinician or pharmacist before adding a sleep aid or supplement. Some products can worsen confusion or daytime sleepiness.
When someone sees something you don't see
Back to our imagined morning. You're gathering what you need for the appointment when the person asks, “What about that little boy? Is he coming with us?”
You look toward the hallway. There isn't a child there.
Visual hallucinations can occur in Lewy body dementia. Before deciding what to say, notice whether the person seems comfortable, frightened, or at risk of getting hurt.
If they're worried, you might say, “I don't see anyone there, but I can see that you're worried. I'm here with you.”
You can be honest about what you see and still take their fear seriously. Let the clinician know about hallucinations, especially when they're new, changing, distressing, or affecting safety. Some don't trouble the person and may not need medication.
Getting out the door may take more help
Lewy body dementia can also cause stiffness, slower movement, shuffling steps, and balance problems. Some people experience dizziness when standing because their blood pressure drops.
So when getting out of a chair takes longer, there may be several reasons. Rushing or pulling on the person's arms can make helping less safe. A physical or occupational therapist can show you an approach that fits their movement difficulties.
By the time you reach the appointment, you've already adjusted to a lot. If the person is now talking easily, you may wonder how to explain the rest of the morning.
Tell the doctor about the shirt. Tell them about last night. A short appointment doesn't show everything you've been managing at home.
Bring your observations, and ask about medication safety
People with Lewy body dementia can have severe reactions to antipsychotic medications. Haloperidol, also called Haldol, is generally avoided in this condition. Make sure each treating professional knows the diagnosis, or that it's suspected, and any previous medication reactions.
Bring an updated medication list, including supplements and over-the-counter products. Don't stop or change prescribed medications on your own. Fever with severe muscle stiffness after an antipsychotic needs emergency care.
You can ask: “Before we start this, can you check whether it's appropriate for someone with Lewy body dementia?”
You aren't expected to know every drug name. The healthcare team is responsible for checking medication risks too.
My free Doctor Visit Guide can help you organize what you've noticed and the questions you want to ask. You don't need a diagnosis to use it.
Start with the part of the day you need help with
In The Signal Guide Navigation System™, Know the Waters means knowing the diagnosis, knowing the person, and noticing the moment.
You don't have to explain every part of the day before asking for help. Start with what's hardest: getting dressed, the long stretches of sleep, or the nights when neither of you rests.
“This is what's happening, and I'm having a hard time managing it” is enough to begin.
And when breakfast brings conversation and a little teasing about the toast, enjoy it. A harder afternoon doesn't take away from the morning you shared.
Listen/watch to Episode 12 of Navigating Dementia: Lewy Body Dementia Symptoms: Sleep Changes, Hallucinations, and Fluctuating Alertness.
Notes
- Lewy Body Dementia Association. (n.d.). Clinical management. https://lbda.org/clinical-management
- Lewy Body Dementia Association. (2022, January 25). Daytime sleepiness is more common in Lewy body dementia than Alzheimer's disease. https://lbda.org/daytime-sleepiness-is-more-common-in-lewy-body-dementia-than-alzheimers-disease
- Lewy Body Dementia Association. (n.d.). Symptoms. https://lbda.org/symptoms
- Lewy Body Dementia Association. (n.d.). What are the treatment options for Lewy body dementia? https://lbda.org/treatment-options
- National Health Service. (2024, May 28). Sudden confusion (delirium). https://www.nhs.uk/symptoms/confusion/
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ABOUT THE AUTHOR
Carlyn Lenfestey, PT, MPT, CDP, CADDCT, is a licensed physical therapist with 25 years of clinical experience and 15 years specializing in dementia care. She is the founder of A Better Way: Dementia Care Solutions, LLC, the creator of the Wheel of Function Framework™, and the host of the podcast, Navigating Dementia.
DISCLAIMER
The information provided in this blog is for educational purposes only and should not be considered medical advice. Always consult with a doctor or a licensed physical therapist before starting any new exercise routine, using assistive devices, or following the recommendations mentioned. Every individual's needs are different, and professional guidance is essential to ensure safety and appropriateness of care.
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