I am excited, grateful, and a little bit stressed.

We are starting a dementia simulation house at the University of Northern.

Every once in a while, you dream about something, and the reality is better than your dream.

For a while, I have mentioned my interest in doing dementia simulation to our Dean (who, by the way, is wonderful). We’ve talked about other spaces–conference rooms, offices that aren’t used, etc.

It was my dream that I would get a dorm room. I’d set it up like a studio apartment. If I was lucky, I could get the room next door to do debriefing after the simulation.

And..somehow…I got a house. A whole house.

It’s been a rental. It’s held some parties. It’s seen some stuff. (My mother-in-law and husband scrubbed the bathroom and kitchen floors today. I have spent a significant amount of the past few weeks shampooing carpet.)

And, now, this the dementia simulation house.

I brought one of our Gerontology alums, Megan Zimmerman, in on the project. She’s a leader for the dementia friendly movement in Iowa. Partnering with her was the best decision I could have made.

Our first task was to furnish the house. When I got the key, we had a couch, an ottoman, and an aqua-colored dresser some renter left in a corner of the basement. I put a call out for just about everything you generally have in a house. A bed. A kitchen table. A vacuum. Bookshelves. A coat rack. Lamps. Blankets. Bedding. A desk. Chairs.

I designated “drop-off hours” and waited at the house–wondering if anyone would actually respond to my email and bring stuff.

Yep. They did. My friends, my colleagues at the university, and my community came through. Big time. I was humbled by their kindness and generosity.

Several people donated the furniture of a parent who passed away and had dementia. Others brought the furniture of someone with dementia who had recently moved to a nursing home. It would be an understatement to say I was touched.

Our soft opening is Tuesday. We have some stuff to figure out (like parking), but we are excited.

We want to help people understand what dementia is. It’s not just memory loss. This isn’t about old people forgetting the names of their grandchildren. It’s much more.

We hope to give our participants a sense of how dementia impacts your interaction with your environment. We want them to realize that the dementia brain has to work harder to do seemingly simple tasks. We hope that they leave with a bit more understanding of what life with dementia might be like.

Despite everything in the world, I think people are good. I think people want to help others. Sometimes they just don’t know how. They don’t know what to say. They don’t know what to do. So they step away.

We want them to have the confidence to step toward people with dementia.

You know those moments where you look around and think...I am doing exactly what I am supposed to be doing right now….

That’s where I’m at.

I accidentally convinced a woman she has dementia.

Let me tell you more.

She’s perhaps in her 70’s. Her husband (and 7 other family members) have passed away in the last couple years.

She sleeps in the same bedroom where her husband died. He fell between the bed and dresser and never got up. Since his death, she’s had some hallucinations at night.

While some are unpleasant, she had one where a really good-looking shirtless guy showed up on a horse by her bed. She says he can come back anytime.

She went to a doctor who gave her a pill that (for the most part) stopped the hallucinations.

Before I knew this story, she asked me if dementia causes hallucinations. I said yes and gave a bit more info….my short TedTalk on dementia and hallucinations.

She asked this question because she wanted to know if she has dementia. I didn’t realize this was the intention of the question. I went on and on about how hallucinations are not uncommon for people living with dementia. I was not helpful.

After I finished talking, I got the rest of the story.

I realized that I left something out.

People living with dementia have hallucinations. People without dementia also have hallucinations.

Dementia is not the only cause of hallucinations. Far from it.

Upon learning more, I back up. I am not particularly worried that she has dementia.

“I don’t think it’s dementia. I think it’s grief,” I told her.

Of course, I am not a medical doctor and cannot diagnose anything. I suggest she keep in touch with her physician.

She told me at night she turns on her closet light and leaves the door slightly cracked. If it’s not totally dark, she told me, it doesn’t happen.

She also told me that if she has dementia, she believes everything happens for a reason and knows it will be okay.

I make a note to myself.

Get more information before you answer a broad question.

Your answer may be misleading if you don’t understand the context.

Do people with dementia have anxiety?

Do people with dementia hear voices?

Do people with dementia get easily frustrated?

Do people with dementia struggle with social skills?

Do people with dementia dislike foods they used to like?

The answers to all of these questions is….sometimes.

If I were to ask the same set of questions about people in general, the answer would still be….sometimes.

Things other than dementia causes anxiety, irritability, social skill deficits, and changes in food tastes.

I worry that sometimes when I say something is a symptom of dementia people assume it is only a symptom of dementia and cannot exist without dementia.

Lack of balance is a symptom of dementia. It is also a symptom of vertigo. Or alcoholism.

Fatigue is a symptom of dementia. It is also a symptom of cancer, COVID, a medication interaction, and heat exhaustion.

Memory loss is a symptom of dementia. It is also a symptom of stress, sleep deprivation, and a vitamin deficiency.

I encourage people to talk to their physician about health issues. I am not a medical doctor, and I hesitate when asked to make speculations on diagnoses.

But it’s important to stress to people that having one symptom that is commonly associated with dementia could mean you have dementia. Or it could mean something else.

You fly home for the holidays. You think Mom is doing okay. Dad has said she’s hanging in there.

You realize she is hanging in there but only because your dad has started doing most things for her. He cooks (not well, but they are fed). He does laundry (you didn’t know he knew how). He goes grocery shopping and feeds the pets and even makes the bed.

Those text messages your mom sends? That’s actually your dad texting you using her phone.

Your Christmas gift this year was a gift card. You don’t mind that, but it seems off. You realize Mom didn’t have enough energy to do the shopping. She used to love doing Christmas shopping for her kids and grandkids. Now you’ve got a $100 gift card to the Home Depot. It’s not a bad gift, but your mom never would have purchased that.

You realize your dad is a rock star, but he’s also a poor communicator and super defensive when you try to have a conversation. In addition, he’s had two heart attacks and doesn’t take care of his Type II diabetes. You think denial isn’t just a river in Egypt.

They are planning a trip to Hawaii. The mention of it makes you stick to your stomach. You don’t think it’ll go well. What if they get separated and she wanders off? Can the two of them get through airport security without a debacle? Who will they call if things fall apart? You aren’t sure if you can step away from your job to go get them if there is a crisis.

Your sister thinks everything is fine. She says your dad should have been doing all of this stuff around the house for years, and it’s good to see him stepping up in retirement.

When you ask your dad if Mom needs to go to the doctor, he asks, “What are they gonna do for her?”

He also insists she’s been to the doctor recently and the doctor didn’t notice a problem. Of course, this was a visit to urgent care for a sinus infection.

He keeps saying you shouldn’t worry. He tells you that they are managing “just fine.” He assures you that he has it under control, but you also see in his eyes that he’s tired. Tired of answering the same question repeatedly. Tired of reminding his wife what day it is. Tired of getting up at night when he wakes up and she’s not beside him. Tired of losing her a little bit more each day.

But they are still having fun. They go for walks. They watch movies. They play cards. You can’t say Mom has a poor quality of life. She’s not ready for a nursing home. You aren’t about to offer that they could come live with you out of state.

So what do you do with this? You feel like you know there is a bomb under your family home but no one else will acknowledge it.

You fly home. You had planned to come back for Easter, but you book a flight in early February.

It is scary to have dementia.

It is frightening to live in a world that doesn’t make sense and be surrounded by people you don’t know.

It’s alarming to realize that you no longer are able to read a clock.

It’s terrifying to know you might forget those you love the most.

It’s upsetting to not be able to come up with a common word, like bath or fork.

It’s difficult when people get frustrated with you and you don’t know why.

It’s scary to not remember how to do basic tasks, like putting out the trash or pumping gas.

It’s hard to process why you’re not sad when you should be (like when a loved one dies) and why you’re not happy when you should be (like when you have a new grandbaby).

It’s worrisome when you don’t have the mental energy to watch a TV show or follow a conversation.

It’s challenging when you’re trying and people think you’re not.

But we still say it’s harder on the family. We still say it’s easier to be the person living with dementia than the caregiver.

I don’t know why it’s a contest. There’s no easy role here.

As a professional, I see that there are more resources available for family caregivers than for those living with dementia (and I’m not saying there are adequate resources for family caregivers). Perhaps family caregivers are more likely to be able to express their needs, but those with dementia have needs as well. And, to be honest, some of my friends with dementia are incredible advocates for those living with dementia.

I think empathy changes everything.

When we think about creating more dementia-friendly communities, we must think of ways to increase empathy for those with dementia. We need our families and communities to understand that dementia is more than just old people forgetting stuff.

First, it’s not just old people. And second, it’s not just memory loss.

People with dementia experience the world differently. And the way they experience the world can be intensely scary. When we say they are “giving us a hard time,” they are acting out of fear. Considering their experience of the world, their response is reasonable.

But are their needs that different than the needs of someone who doesn’t have dementia? They need to be listened to, to be cared for, to be understood. They need to laugh and to connect.

And we need to step into their world to make that happen.

Sometimes we overcomplicate things. We talk about theory, policy, and research. It’s all good stuff, of course, but maybe sometimes we need to back up.

Here’s a short video clip of my friend, Kevin, who lives with Lewy Body Dementia. Maybe, like he says, it’s about heart.

I was on a zoom call with our state’s most passionate and educated dementia advocates. And I heard it.

Behavioral problems.

Some nursing homes don’t let in people with dementia because they are behavioral problems.

I cringed, and I pointed out that we should change our language. And then the meeting continued. I wondered if my point had registered. Probably not, but I’ll keep making it. This is the hill I will die on. One of a few, actually.

As professionals in the field, we need to do better.

You see, I think that language matters. How we speak about something impacts how we think about it and act upon it. People with dementia are NOT behavioral issues. In fact, I won’t even say that they HAVE behavioral issues. Let’s strike the term entirely.

What they have are symptoms. Symptoms of a disease.

It would be cruel to get visibly annoyed with or to deny care to someone with lung disease because they coughed. What if we asked them to leave a healthcare facility because other individuals were frustrated with their cough? We would think someone was a jerk if they complained that an individual who had just had a leg amputated took longer to get from the parking lot to the building. We accept that it will take them longer and accommodate that.

Yet it is commonplace to see symptoms of dementia as behavioral issues, personality defects, or just people set out to make others’ lives difficult.

We say that people with dementia “act out.” I disagree. They aren’t acting at all. They are scared. And, if you consider their perspective, they have reason to be. Imagine if some people you’ve never met (even if they were in your room yesterday) showed up in your bedroom and asked you to take off your clothes. What if they wanted to watch you go to the restroom? Give you a shower? How would you react?

I sometimes hear people say that someone with dementia is giving them a hard time. When we say someone is giving us a hard time, we make it about us. It’s not about us. It’s about the person with dementia…and they may be having a hard time. They are not intentionally being difficult.

A couple of years ago I met the wife of a man living with Alzheimer’s at an educational event. She invited me to meet him after my presentation. His room was in an adjacent building. As we walked there on a beautiful day, she said she needed to ask me a question that she couldn’t ask anyone else.

She stopped walking and turned to me. With shame in her voice, she told me that her husband sometimes made sexually inappropriate remarks to the young women who cared for him. This was obviously something that had been weighing on her. She knew her husband would be horrified if he understood what was happening, and it was not something he would have done before he had dementia.

My heart sunk.

I was successful in explaining that this was a symptom. It wasn’t a character defect. I explained that changes her husband’s brain were responsible for this. We discussed how she could not take on responsibility for these comments. She couldn’t stop them. I used my go-to line….”You can’t fix dementia.”

She told me that, fortunately, her husband’s caregivers were typically able to ignore these comments and divert him. They frequently spoke about what a kind and gentle person he was and how much they enjoyed caring for him. (Please note—the facility that her husband resided in prioritizing education for employees.)

I know that nursing homes and other facilities may decline to admit some people with dementia because they are labelled as “being difficult” or having “behavioral problems.” Can nursing homes do this? Absolutely…they can and they do. Many people are ignorant of the fact that a nursing home can say “thanks but no thanks” to your loved one. And then what?

If a nursing home makes a certain amount of money for each resident, it’s appealing if they can fill those beds with individuals who require less time and effort. It makes sense in terms of staffing and economics. It’s a flaw of our system.

Not surprisingly, it is creating a challenge. There are people with dementia with nowhere to go. I wish this were something that happened occasionally, but it’s not.

As people live longer and more individuals are likely to have dementia, we have to find a way to do better. We have to find a way to serve individuals who are experiencing symptoms of dementia, even when these symptoms aren’t pleasant. We cannot turn our backs and (literally) put vulnerable people out on the street.

It’s a human rights issue.