If you had dementia and couldn’t express your needs, what would you want your caregiver to know?
It’s a powerful question—and one that stops people in their tracks. In fact, when I first introduced this simple exercise at a dementia training in Lake Havasu, Arizona, people couldn’t wait to write down their answers. And by the time the break ended, a wall was covered in sticky notes, each one telling a story.
Here’s the thing: dementia care isn’t just about medical decisions or legal documents. It’s about the small things—personal preferences—that make someone feel safe, understood, and at ease. And yet, these are often the most overlooked.
So today, let’s talk about how one sticky note exercise can completely change how we care for our loved ones with dementia.
The Sticky Note That Changed Everything
During a full-day dementia training, the event organizer walked up with a sticky note that said:
“I like to wear socks—but not while I’m sleeping.”
Then she turned to the room and asked, “What about you?”
That question led to an incredible moment. People imagined themselves with dementia and unable to speak. They wrote down what they’d want caregivers to know. Notes said things like:
- “Turn on the fan when I sleep”
- “Pluck my chin hairs”
- “Put on my shower shoes—I hate wet tile”
One note especially stood out: “Always put on my shower shoes before I get in the shower. I hate the feel of bare feet on wet tile.”
Now imagine this person later develops dementia. If a caregiver doesn’t know that detail, showering could become a battle. Not because of “behavior,” but because of a basic, unmet preference.
The Real Reason Behind So Many Dementia Behaviors
We often label challenging moments in dementia care as “difficult behaviors.” But what if they’re not behaviors at all?
What if someone is reacting to discomfort, fear, or frustration? Something as small as the feel of cold tile underfoot or being woken up early could trigger confusion or resistance.
According to the Alzheimer’s Association, behavioral symptoms like agitation or aggression often have underlying causes such as environmental discomfort, unmet needs, or communication difficulties (source). This means your loved one might not be trying to give you a hard time—they might be having a hard time.
When we pause and ask, “What could they be trying to tell me?” everything changes.
My Personal List – And Why You Should Make Yours
So here’s what I would want caregivers to know if I ever developed dementia:
Keep a dog in my life. Even if I can’t care for one, let me pet one, walk one, or just be around one.
Do not wake me up for breakfast. I’m not a morning person, and I’m definitely not a breakfast fan. But please give me good coffee when I do get up.
Play upbeat music and dance with me. Movement and rhythm light me up. Even on tough days, music will still reach me.
These aren’t medical orders. They’re personal truths—little things that bring joy, peace, and connection.
Now, it’s your turn.
Try This Exercise: “My 3 Things”
Here’s how to do it:
- Step 1: Ask yourself: If I couldn’t speak, what would I want my caregiver to know about how I live, feel, and function?
- Step 2: Write down 3 things. Then keep going if more come to mind.
- Step 3: Share your list. Put it somewhere accessible—like a healthcare binder, Google Doc, or printed sheet in your home.
This is the kind of “care planning” we don’t often talk about. We create wills, assign power of attorney, and make medical decisions. But we skip the part that makes care personal.
What About Your Loved One’s List?
If your loved one can still communicate, ask them what their three things would be.
And if communication is already difficult, observe and think about what you’ve learned over the years:
Do they hate cold drinks?
Do they always want their favorite blanket nearby?
Do they need a nightlight to feel safe?
Even small insights can lead to more compassionate, effective care.
And remember—preferences might shift. Review the list now and then.
Why This Exercise Matters More Than You Think
This isn’t just a feel-good activity. It’s a practical caregiving strategy backed by a growing understanding of person-centered dementia care.
Studies show that when caregivers tailor daily routines and care strategies to individual preferences, people with dementia experience:
Less agitation
Lower use of antipsychotic medications
Better quality of life
(NIH – Person-Centered Dementia Care)
So yes, your loved one’s sticky note might seem small. But it might be the key to helping them feel safe, respected, and connected.
Make It Official – And Keep It Visible
Don’t just do this exercise once and forget about it. Here’s how to make it part of your caregiving system:
Write it down. Handwritten notes, typed documents, or digital files are all great.
Share it. Let family, care team, or paid caregivers know.
Store it. Keep it in a healthcare binder, folder, or your loved one’s room.
This list can be just as important as a living will. It’s about honoring the life your loved one built—even when they can’t tell you how.
Final Thoughts
Careblazer, dementia care doesn’t have to be a guessing game. You don’t have to rely on tips and tricks that don’t work for your loved one.
Start with their story.
Ask about preferences. Think beyond checklists and behavior charts. It’s the little things—the temperature of a drink, the feel of shower shoes, the beat of a favorite song—that turn caregiving into connection.
Now it’s your turn.
What are your three things?
What would be on your loved one’s list?
Write them down. Share them with your care team. And if you’re looking for more ways to make caregiving easier and more joyful, don’t miss our free weekly Dementia Dose newsletter. You’ll get bite-sized, actionable tips right in your inbox. Sign up by clicking here.
💬 What are your 3 things? Drop them in the comments below. 💬
Want to watch the in-depth video that inspired this post?
Click the video below to watch. ↓
You’re Not Alone (And You Don’t Have to Figure This Out Alone)
One of the most powerful things you can do as a caregiver is ask for help, support, and perspective. Inside my Care Collective, we dive into these kinds of challenges every single week. You’ll get real-time guidance, hear from other caregivers, and work through these difficult moments together with expert support.
You don’t have to guess anymore. You don’t have to feel stuck. You don’t have to do it alone.
Join the Care Collective today and take the next step in making dementia caregiving easier.