This was posted to the Ted YouTube channel a few days ago. I was fortunate to be chosen to be featured on the channel; I know that this is the case for less than 1% of TedX talks.

For me, that speaks to the type of information people are looking for related to dementia. We all get excited about advancements in research and potential theories that might lead to cures for Alzheimer’s and other dementias.

Yet, the families I work with want to know how to get through each day with a little bit of joy, peace, and humor.

If there is something in my talk that sparks a new strategies for supporting someone with dementia or a new perspective that helps a family get through the day with a tiny bit more patience, I am grateful for the opportunity to get this information out in the world.

Recently, I was interviewed to be featured as an alum of my high school. I was genuinely excited about it, mostly because the person doing the interview was Matt Coss, a friend from high school and college whom I hadn’t talked to in years.

Matt asked me about my career path and my academic journey. I talked about being a professor, teaching courses in the age of AI (blah), helping to build the Gerontology major, and our Dementia Simulation House and outreach/education program.

As I was answering, something surprised me.

Out of everything we discussed in the one hour interview, it was the students who work with me at the Dementia Simulation House that I was most excited to talk about.

Of course, I love the community education and outreach we do. I care about educating families, professionals, and the general public about dementia.

But I also know I won’t always be doing this work. At some point, I will retire (and no…it won’t be soon). There will be a time when I’m no longer the one standing in front of groups talking about dementia.

And I think that’s why the students matter so much to me.

The students who work at the Dementia Simulation House are a part of this work that will outlast me. And it’s reassuring that there are young people who are passionate about our mission.

They may not become professors of gerontology like me—and that’s fine. They will become speech-language pathologists, mental health counselors, nurses, physical therapists, audiologists, and other professionals who work closely with people and families. They will go to graduate school. They will move into careers. And they will take the house with them, if you will, wherever they go.

They learn from me, but mostly they learn from each other.

Each year, an older cohort takes the newer students under their wing. They train them. They model how to talk with families and how to respond when someone asks a hard question.

Every year, we welcome a few new students to the team, and every year I am reminded how thoughtful, capable, and genuinely good they are.

They are smart. They care. And they have ideas—really good ones.

They’ve taken my original concept and built on it. They’ve made it better. They see things I don’t. They suggest changes. They bring creativity and energy.

I push them out of their comfort zones.–or so I am told. I make them give presentations before they feel ready. I ask them to have conversations they’re not sure they can handle. And they realize they are capable of more than they thought.

We don’t have the funding for a large professional staff at the Dementia Simulation House. We rely mostly on undergraduate students, with a few graduate students mixed in.

If you donate to the Dementia Simulation House and our programs, your donation might/can be used to support our students with compensation for internships and hours.

Our students have to learn quickly how to work with the community, how to be flexible, and how to improvise when things don’t go as planned (and that happens A LOT).

Yes, they learn about dementia. But more importantly, they learn tools to educate and support people. And they know that even with these tools, they will sometimes fail–just like I do. That’s part of it.

Knowing that when I eventually step back, there will be people out in the world doing this work in different fields and in different ways makes me happy.

There are days I don’t know if what I do matters. There are a lot of those days lately.

And our students are what motivate me to keep going.

As many of you know, I founded and direct the Dementia Simulation House at the University of Northern Iowa. Our focus is community education and outreach.

We work with everyone—from family caregivers, to the general public, to healthcare professionals.

And we never really know who will walk through our doors on any given day.

One day, a family caregiver came to do the simulation. Her mom had dementia, and she wanted to better understand what her mom might be experiencing.

We put the gear on her. She went through the simulation.

Afterward, we had a debriefing section. We ask participants to share one word that describes the experience.

Her word was shame.

We asked her to tell us more.

She said she felt ashamed because she had been impatient with her mother. She had no idea how difficult some everyday household tasks might be for her mom. Recently, she had asked her mom to help clean the house before company came. When her mom struggled, she showed frustration instead of compassion.

As she talked, she started labeling herself as a bad caregiver and a bad daughter.

And I felt awful that this experience had created such negative feelings for her.

But you only know what you know. You don’t know what you don’t know.

And then, sometimes, a light comes on–like she experienced with the simulation. You learn more. You see more clearly. That doesn’t mean you failed before. It means you didn’t have the information yet.

As a caregiver, you don’t have time to sit in shame.

I don’t know how to magically take that feeling away.

But I do know this: people are almost always doing the best they can with the information, insight, and resources they have at the time. And when they get more information, it’s meant to empower them moving forward rather than guilt them about the past.

In many ways, we are failing caregivers.

We tell them to “be patient.” I give a presentation where those words are literally on the screen. But maybe preaching patience isn’t always where it’s at. Maybe we also need to acknowledge that caregivers are human beings. They will not always be patient.

As a caregiver, you will not always be patient. There, I said it.

Losing your patience does not make you a bad caregiver. It does not mean you don’t love the person you’re caring for. It does not mean you aren’t trying hard enough.

Caregiving is not about perfection.

It’s about showing up again and again with more information, more support, and giving yourself some grace.

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.