A few months ago, I spoke at a caregiving conference. A woman came up after my speech to talk to me about her mom.

Her mom had recently passed away from early-onset Alzheimer’s disease. She was diagnosed in her early 50s. I will call her mom Jill.

Jill was still teaching middle school math when the symptoms started. Many students had her as a teacher for two to three consecutive years. She was a teacher that students confided in and trusted.

When Jill started showing symptoms of dementia, her husband and adult children didn’t notice.

But her students did.

They noticed she seemed flustered with simple tasks. Instructions didn’t always make sense. They turned in assignments but they never seemed to be graded.

She also started getting confused about which class she was teaching at the time. Algebra? Geometry? Basic math?

At the end of the year, she told her students she had lost their assignments and asked them to write the grade they thought they deserved directly into her gradebook.

You’d think they would all enter As. But they didn’t. Most entered the grade that they deserved.

Her students were concerned and confused about the changes they saw in Jill. They didn’t go to the principal or other teachers. They were afraid she would get in trouble or be fired.

So instead, several of them talked to their parents about how to approach the situation. It was a small town, and some of the parents knew Jill’s husband and daughter. They contacted them to express the students’ concerns in a kind and caring way.

It was almost as if the students were holding a secret about her—trying to protect her—until they couldn’t anymore.

At that point, she had to stop teaching.

But this group of students stayed in touch with her. They sent her texts and cards. Some of them even visited when she moved in a nursing home.

I’m telling this story plainly rather than as a feel-good story. It doesn’t have a happy ending.

Her mom declined quickly. She became agitated as her disease progressed. The caregiving journey took a toll on her father. He neglected his own health and died a few months after she did.

Within her sadness, the woman I spoke with expressed tremendous gratitude for her mom’s students and the way they handled something they didn’t fully understand with so much sensitivity.

They saw change before adults did. And instead of exploiting it or making fun of her, they tried to protect her.

But this story reminded me—again—that dementia doesn’t always look like what we expect. Jill was functioning well at home and in interactions with her family.

Sometimes the people who notice first aren’t family members or even adults.

Sometimes it’s a classroom full of middle schoolers who know their teacher well enough to recognize when something is off.

Dementia is not just memory loss. It’s cognitive decline.

It affects the brain, and the brain controls everything. Movement. Sensation. Perception. Judgment.

Sure, memory is part of that, but it’s not the whole picture. People can have dementia without obvious memory problems, and we are very bad at recognizing that.

Someone can hold a conversation. They remember your name. They tell you what they had for breakfast. So they seem fine.

But they aren’t fine.

They don’t understand finances anymore. Bills don’t make sense. Numbers don’t add up the way they used to. Tasks that were once automatic—like brushing their teeth or mowing the grass—now take effort or get skipped altogether.

They can still drive safely but they always seem to end up at the wrong place. No one quite trusts them to babysit the grandkids, even though no one can fully explain why.

Maybe they seem apathetic. They don’t really care what the grandkids are up to anymore. Perhaps food doesn’t taste right, so they insist something is wrong with the recipe. Maybe they’re more impatient while waiting in the checkout line at Target or Wal-Mart.

Maybe things that used to be fun are now too much. A parade is loud and crowded and exhausting. A family gathering is just too overwhelming.

If you’re a waiter at a restaurant, you don’t notice anything off. If you’re a relative who visits occasionally, you don’t understand what their spouse is talking about. They seem oriented and normal.

Dementia doesn’t always announce itself in the way that we expect it to.

Sometimes it shows up in ways that don’t reveal themselves over a short conversation or a holiday visit. The people who live with it every day see things that others don’t. And many times we don’t believe them or we think they are overreacting.

This is where we tend to get it wrong.

When someone tells you that they are changing—or that their partner or parent is changing—listen. Don’t discount it. Don’t say you forget things sometimes too. Don’t say everything seems normal to you. Don’t point out that they remember names just fine.

Listen.

We misunderstand dementia because we think cognition means memory alone. And when memory looks intact, we assume everything else must be too.

But cognition is bigger than memory.

And when we miss that, we miss an opportunity to support individuals and families in a critical time.

I recently had the opportunity to give a TEDx talk.

The organizers approached me and invited me to apply for the event. Of course, it was expected that I would talk about dementia, but when I sat down to write a proposal, I was stuck. Not because I didn’t have anything to say, but because I had too much to say.

What is actually important for people to know about dementia? What do most people not understand—but really need to? And how do you say something new about a topic that so many people think they already understand?

I didn’t want to give a talk about medications, biomarkers, or early detection. Those topics matter. They are important, but they’re not my area of expertise. And they’re not what most people are asking me about when they pull me aside after a talk or send me a message late at night.

What people want to know is how to live with dementia.

I talked about dementia and anxiety and about how people living with dementia have limited “mental energy pennies.”

I had 14 minutes.

That’s not a lot of time.

I’m a college professor. I’m used to talking for hours. My husband will tell you that I love to hear my own voice—and honestly, that part is probably true. I love public speaking. But this was different.

I couldn’t wander or improvise. I had to memorize a 14-minute talk that mattered and might change how people think.

On the day of the event, I spoke for 14:07.

And recently, I was notified that my talk was selected as an Editor’s Pick on the TED YouTube channel. That’s why the video hasn’t been released yet.

I’ll give myself some credit for that. But more than anything, I think it’s the topic.

I think people are hungry for this kind of information about dementia.

This talk wasn’t about curing Alzheimer’s or other dementias. I never mentioned a cure. I didn’t talk about biomarkers or the newest Alzheimer’s drugs on the market.

I talked about how to live with a life-changing condition and experience joy, love, humor, and connection.

And maybe what I talked about will lead to more conversations about dementia that focus on living alongside it with hope and honesty.

Someone I know has dementia. She was an elementary school teacher. She’s gentle, patient, and kind. She was diagnosed about three years ago.

Early on, the changes included depression, apathy, and increasing difficulty with tasks that had once been automatic. There were financial issues—missed bills, poor judgment, and eventually being scammed out of a significant amount of money by an extended family member.

A few years later, the picture looks different.

Now she is angry. Angry at everyone.

Her family is often told, “Don’t take it personally.” I understand why “experts” say that, but I also think it’s mostly a waste of breath.

Of course you shouldn’t take it personally. But we live in the real word, and we are human beings.

It’s hard not to take it personally when your mother is calling you names you weren’t allowed to say as a kid and then tells you she hopes you die. It’s awful when this hostility comes from someone you are actively sacrificing parts of your own life to care for.

Caregiving already for a lot from you. When the person you are caring for is openly insulting you, it adds another layer entirely. I can’t tell you anything that makes that okay—because it isn’t. It may not be your loved one’s fault, but I’m not sure that makes it easier.

To be clear, this extreme anger is not present for everyone who has dementia.

Anger is not a universal stage of dementia. Some people with dementia experience significant anger or aggression. Others never do.

I can’t predict who anger will affect. No one can.

But I do try to acknowledge its impact.

When we tell caregivers not to take it personally, to ignore it, or to remind themselves that “it’s just the disease talking,” we often think we’re being helpful.

But what that really does is dismiss the emotional reality of the situation. It skips over the exhaustion and the damage of being emotionally attacked by someone you love—sometimes daily.

Acknowledging that dementia may be contributing to the behavior does not erase the harm it causes.

Families don’t need platitudes. They don’t need to be told to grow thicker skin.

They need validation and support that recognizes the toll this takes.

One of the hardest parts of dementia caregiving is figuring out when to step in—and when not to. You may have already figured that out.

People want a clear signal. Something that says, Now is when I should help more. But that moment rarely exists.

Dementia progresses over time, and change is uneven and not predictable. What someone can do today might be harder next week, but what was hard yesterday might be do-able again today.

That uncertainty is one of the things that makes decision-making as a caregiver exhausting.

You won’t always choose correctly.

You’ll help too much sometimes. You’ll wait too long other times. You might step in because it feels safer, but sometimes you’ll step back because you hope things haven’t really changed that much.

That’s not incompetent caregiving. That’s what it looks like to care about someone while their needs are shifting.

Once someone has a diagnosis of a condition that causes dementia, it’s easy to assume they either need help with everything—or nothing. That once support is needed in one area, it must be needed everywhere.

But that’s not how real life works.

Someone might need help managing medications but not choosing what to wear. They might need reminders about appointments but not help with making meals. They might need supervision for safety but still want—and deserve—to make everyday choices on their own.

Taking over often feels like the responsible choice. It often lowers anxiety for the caregiver. It reduces risk to your loved one with dementia.

But when support becomes global instead of specific to a person’s need, people with dementia slowly lose their place in their own lives.

Routines are imposed because they’re easier and faster. Preferences sometimes get brushed aside because things feel urgent and complicated.

A dementia diagnosis means a person will likely need more support as their condition progresses. It does not mean someone should immediately become a bystander in their own life.

The work is in noticing the need. Adjusting. Asking.

Paying attention to what still works, what needs help, and what needs just a tiny bit of support at the moment.

You won’t always get it right, and that’s okay.

Many people living with dementia still go shopping, either alone or with friends, family members, or caregivers. They still want to choose their own greeting cards, find their favorite shampoo, or pick out a birthday gift for someone they love. But a typical store can be confusing, overwhelming, or just plain exhausting for a person with cognitive decline.

Being dementia-friendly doesn’t mean creating a separate section or offering special treatment. It means shaping a space—and a way of interacting—that’s easier to navigate, calmer, and more supportive for people who might be processing things differently.

Here are some practical ways stores can help:

• Use clear, easy-to-read signs with large fonts and strong contrast. Avoid decorative or quirky restroom labels—just say “Restroom” and use familiar symbols.
• Keep store layouts consistent. If someone has finally figured out where the peanut butter is, don’t move it to the other side of the store next week.
• Turn the music down. Better yet, offer quiet hours with low noise. Loud environments can make people anxious or disoriented.
• Avoid flickering or harsh lighting. Bright, even light is easier on the brain and helps reduce confusion.
• Keep aisles wide and free of clutter. A clear path helps everyone—especially someone who might already feel unsure on their feet.

Checkout can be one of the hardest parts of the shopping trip. It requires focus, memory, number recognition, and potentially interacting with unfamiliar equipment—all while other customers wait. It’s a lot.

What helps:

• Slow down. Give people space and time to process without pressure.
• Use friendly, clear phrases like: “You can put your card here or tap it right on the screen.”
• If someone seems unsure, gently offer: “Would you like me to tap or swipe your card for you?”
• Steer people away from self-checkout if they seem overwhelmed. Those stations are often too fast-paced, too noisy, and too complicated.
• Make sure people leave with their receipt and all of their items. Assure that they do not leave their credit card behind.

It’s also important to remember that behavior can be misunderstood.

Someone might:

• Find their favorite snack and start eating it before they reach the checkout—not out of disrespect, but because they’re focused on the moment and not on the process.
• Finally locate the cologne they’ve worn for 30 years and head for the exit, forgetting to pay.
• Seem rude or abrupt—not because they’re unkind, but because the shopping trip has taken every bit of their mental energy.
• Knock over a display or drop an item—not because they’re careless, but because they’re moving through a space that feels unfamiliar and overstimulating.

If something unexpected happens, assume good intentions. A calm, kind response can make all the difference. An employee who smiles and says, “Let’s take care of that together,” can turn a difficult moment into one of connection.

And restrooms matter. If a shopper isn’t sure they’ll be able to find or use a restroom, they may not come at all.

What helps:

• Offer at least one private, all-gender or family-style restroom. This restroom should have room for a caregiver in addition to the person living with dementia. Ideally, include a chair for the caregiver so they do not have to stand while their person is on the toilet.
• Use clear signage—words and symbols, no cute nicknames or “clever” graphics. “Princes” and “princesses” may seem like an adorable way to label your restrooms but can add a layer of confusion for those who live with cognitive decline.
• Avoid requiring a key if you can. Needing to track someone down just to use the restroom adds a layer of stress.

A quick training with your team can help everyone feel more confident and prepared. A few essentials:

• Not everyone who needs extra patience looks like they need extra patience.
• If someone seems confused or overwhelmed, pause and respond with calm kindness.
• Speak clearly and slowly. Offer support without drawing attention.
• Approach individuals from the front to avoid startling them.

Most people living with dementia won’t mention that they have dementia to a retail employee. But they’ll notice if your store feels welcoming. They’ll remember if they felt rushed or if they felt seen.

Kindness is free. A little patience and a gentle tone go a long way. What helps one person—whether they’re living with dementia, overwhelmed, tired, or simply having a hard day—helps everyone.

[If you are in Iowa and have an interest in becoming a Dementia Friendly retail store, don’t hesitate to reach out (dementia.simulation@uni.edu). It’s a one hour training and you must have at least 50% of your employees present.]

I was once having lunch with someone in the early stages of dementia. The menu was overwhelming—tiny font, too many choices, and clever descriptions with jargon that made it hard to tell what anything actually was.

He looked at the server, panicked.
“I’ll have… um…”
He trailed off. She looked impatient. Finally, she rolled her eyes, mumbled she’d come back later, and walked away.
He looked embarrassed.

And my heart broke a little.

But it doesn’t have to be that way.

Restaurants can be more than just a place to eat. They can be a place where someone with dementia still feels like they belong. Where a caregiver doesn’t have to brace for judgment. Where lunch feels… like lunch.

Here’s how you can help make that happen if you work in the restaurant industry:

(Note–There are a lot of other ways to be dementia friendly….these are just a few ideas to get you thinking!):

Keep the Menu Simple

Big fonts. Easy words. High contrast. Pictures help, too. It’s not about dumbing anything down—it’s about making sure more people can enjoy their meal without stress.

Be Mindful of Noise

Too much noise—whether it’s clanking dishes, loud conversations, or loud background music (is loud background music an oxymoron?) —can be overwhelming for someone with dementia. Keep music low and calming. Skip the playlists that feel like a nightclub at noon. Soft instrumental or acoustic tunes work well. If you have a quieter section of the restaurant, that’s a great place to seat guests who might benefit from a calmer environment.

Be Patient

Some folks might need a little more time to order. They might repeat themselves. Or lose their words. A little patience and a calm voice can go a long way.

Reassure people that there is no need to rush. Try saying “Take your time—I’m happy to help.”

Don’t roll your eyes when someone takes a bit longer to order. Stay tuned in and engaged.

Those small things? They mean the world.

Don’t Be Cute with Bathroom Signs

Please don’t make people decode “Lads” and “Dames” or try to read cursive signs in dim lighting. Stick with the classics signs and symbols for restrooms. Use clear, bold print and—if possible—include images. When someone has to urgently find a restroom, clarity is kindness.

Let People Know They’re Welcome

People with dementia still want to go out to eat. They still want pancakes. And coffee. And birthday dinners. And connection.

So if you’re a restaurant owner, manager, or server—thank you for considering this. Thank you for thinking beyond what’s easy or efficient. Thank you for setting the table for everyone.

I know not everyone enjoys eating out–but it is one of my favorite things to do. And I know many people feel that way. If we want people living with dementia to thrive in their communities as long as possible, we need to think about how to make restaurants more dementia friendly.

If you’re in Iowa and want to become a Dementia Friendly Restaurant, contact us at dementia.simulation@uni.edu. We’d love to help!