Lewy Body Dementia: What I Wish I Had Known Earlier as an Occupational Therapist and Daughter
What six years of caring for my mom taught me about a disease I thought my professional background had prepared me for.
October is Lewy Body Dementia Awareness Month, and this one is deeply personal for me.
I have been an occupational therapist for more than 25 years. I understood dementia. I understood safety, function, routines, cognition, and the importance of helping people remain as independent as possible.
Or at least I thought I did.
Then my mom developed Lewy body dementia.
Lewy body dementia (LBD) is a progressive brain disease that can affect thinking, movement, sleep, behavior, and mood. Changes in alertness and thinking, visual hallucinations, and movement symptoms are among the features families may encounter. (Source: Lewy Body Dementia Association)
For six years, I wasn’t only an occupational therapist looking at dementia from a professional perspective. I was a daughter trying to understand what was happening to my mom and figuring out, day by day, how to help her.
And Lewy body dementia taught me things that no textbook ever could.
Lewy Body Dementia Isn’t Always Predictable
One of the hardest things to understand was how much my mom’s abilities could fluctuate.
There could be times when she seemed remarkably clear and capable, followed by times when she struggled with something that had seemed easy before.
As a caregiver, it can be confusing.
You may wonder:
Did I imagine how well she was doing yesterday?
Is she getting worse?
Why could she do this earlier but not now?
Eventually, I learned not to assume that what my mom could—or couldn’t—do at one moment necessarily told me what the rest of the day would look like.
Instead of expecting consistency, I learned to meet her where she was in that particular moment.
That shift mattered.
Hallucinations Can Feel Completely Real to the Person Experiencing Them
Visual hallucinations are a common feature of Lewy body dementia.
Knowing about hallucinations professionally and watching someone you love experience them are two very different things.
My instinct wasn’t to prove my mom wrong.
If what she was seeing felt real to her, repeatedly telling her it wasn’t there didn’t necessarily make the experience disappear.
I learned to pay attention to something else:
Was she frightened? Was she uncomfortable? Or was what she was seeing simply there for her?
Sometimes the goal wasn’t to correct what she saw. It was to help her feel secure.
That distinction changed the way I responded.
The Environment Can Sometimes Be Changed When the Person Can’t
This is where my occupational therapy background became incredibly valuable.
When something repeatedly caused difficulty, I started asking:
What can I change around her?
Maybe an item needed to be easier to see.
Maybe there were too many choices.
Maybe a task had too many steps.
Maybe something familiar needed to stay in the same place.
Maybe a picture or label could provide a cue.
Maybe the environment itself was contributing to the problem.
Caregivers can spend enormous amounts of energy reminding, explaining, and correcting.
Sometimes changing the environment can be more useful than asking the person with dementia to change.
Independence Doesn’t Have to Mean Doing Everything Alone
This may be one of the biggest lessons dementia taught me as both an OT and a daughter.
Independence isn’t all or nothing.
If my mom couldn’t complete an entire activity herself, that didn’t mean I needed to take over the whole thing.
Maybe I could set something up for her.
Maybe I could simplify the choices.
Maybe I could give her the first step.
Maybe we could do it together.
The goal became less about completing something perfectly and more about allowing my mom to continue participating in her own life whenever she could.
Those moments mattered.
Familiarity Became More Important Than Perfection
As dementia progresses, caregivers often become focused on what needs to get done.
Did she eat?
Did she take her medication?
Did she get dressed?
Did we make it to the appointment?
Those things matter.
But over six years of caregiving, I also learned the importance of familiar routines, familiar activities, familiar music, familiar people, and simply being together.
Not every activity needed a therapeutic purpose.
Not every moment needed to accomplish something.
Sometimes sitting together and enjoying something familiar was enough.
I Had to Learn to See What Was Still There
Dementia makes it very easy to notice loss.
Another task becomes difficult.
Another ability changes.
Another responsibility shifts to the caregiver.
Those losses are real, and I would never minimize them.
But I learned to intentionally look for something else, too.
What could my mom still do?
What did she still enjoy?
What made her smile?
What could she participate in if I changed the activity a little?
What connection was still possible today?
Lewy body dementia changed many things about my mom’s abilities.
It didn’t erase who she was.
And remembering that changed the way I cared for her.
What I Wish I Had Known Earlier
I wish I had understood from the beginning that I wasn’t going to find one perfect strategy that would work every day.
I wish I had known how much flexibility caregiving would require.
I wish I had known that sometimes adapting the environment would work better than another explanation.
I wish I had understood sooner that participation mattered more than perfect completion.
And I wish I had known that some of the quietest moments—the ones that didn’t look like accomplishments at all—would eventually become some of the memories I treasured most.
My professional experience gave me tools.
Being my mom’s caregiver taught me how deeply human those tools needed to be.
For Families Living With Lewy Body Dementia
If someone you love has Lewy body dementia, there may be days when you feel as though you’re constantly trying to figure out a new version of the puzzle.
What worked yesterday may not work today.
That’s why I encourage families to focus less on doing everything “right” and more on staying curious:
What is difficult right now?
What can we simplify?
What can we change in the environment?
What can this person still do?
How can I help them participate rather than automatically doing it for them?
And sometimes:
Can we simply enjoy this moment together?
October is Lewy Body Dementia Awareness Month. I’ll be sharing more throughout the month about some of the challenges families may encounter with LBD and practical ways caregivers can adapt everyday life.
But I wanted to begin here—with my mom.
Because I first understood dementia through the lens of an occupational therapist.
Caring for my mom taught me what no professional training ever could.
And those turned out to be two very different kinds of education.
Learn More About Lewy Body Dementia
If you would like to learn more about Lewy body dementia, the Lewy Body Dementia Association (LBDA) provides information and resources for people living with LBD, families, caregivers, and healthcare professionals.
→ Understanding Lewy Body Dementia
Information about LBD, including symptoms, diagnosis, treatment, and resources for families and caregivers.
→ LBD Symptoms
Learn more about cognitive fluctuations, visual hallucinations, movement changes, sleep disorders, and other symptoms associated with LBD.
→ Watch SPARK: Robin Williams and His Battle with Lewy Body Dementia
An educational resource exploring Robin Williams’ experience with LBD through the perspective of his wife, Susan Schneider Williams.
Educational Disclaimer
This article is intended for educational and informational purposes only and is not a substitute for individualized occupational therapy services, medical advice, diagnosis, or treatment. Talk with your healthcare provider about your individual needs before making changes related to your health or care.
About the Author
Kimberly Orlando, MOT, OTR/L is an occupational therapist with more than 25 years of clinical experience across hospital, home health, skilled nursing, and community-based settings. She also spent six years caring for her mother with Lewy body dementia, giving her both professional and personal insight into the challenges caregivers and families face.
Kimberly is the founder of Sunny by Kimberly, where she shares evidence-informed occupational therapy strategies, caregiver education, healthy aging resources, and practical tools to support greater independence, purpose, and connection.
→ Learn more at Sunny by Kimberly
