People living with dementia are not empty shells.

They are human beings.

Still, I hear it all the time.

They’re gone.

They’re just a shell.

They’re not in there anymore.

People say this because they’re hurting. Because the changes they see are painful and confusing. Because it’s hard to reconcile who someone used to be with who they are today.

Someone with dementia is as human as they have been for every moment of their life.

Yes, dementia changes people. It changes memory, language, personality, and behavior.

It can make someone unrecognizable in ways that feel cruel and unfair. But it does not erase who they are at their core. It doesn’t wipe away their humanity.

They feel love. They feel fear. They feel comfort.

Here’s why remembering that matters:

If we start believing that people with dementia are “gone,” we stop trying to connect. We stop talking to them like adults. We stop treating them with the dignity they deserve. And that is when the real loss happens.

People with dementia are still here. Different, yes. But absolutely still here.

And they deserve for us to see them.

I recently did a Zooom consultation with a dementia caregiver. She was well-educated and it was obvious she continually sought out information to become a better caregiver.

Her husband has Alzheimer’s. She told me he had plateaued for a few years without much progression, but lately his decline had been steep.

And she wasn’t sure what to do.

After some more conversation, I realized why she had booked a consultation and what she wanted to know.

She wanted to know how to stop the decline. She wanted to know what she had done to cause the decline. She wanted to know what she was doing wrong.

But she’s not doing anything wrong.

He stayed the same. And then he declined.

She is interpreting that as what she was doing was working, and then she must have messed up or changed sometime to cause the progression.

I was interpreting it as….dementia.

I feel like I give caregivers mixed messages. I talk to them about empowerment. But I also talk to them about how they are powerless when it comes to changes that occur due to dementia.

We can change a person’s environment. We can change how we interact with that person. But we can’t stop the progression of dementia.

We didn’t cause dementia, and we can’t cure dementia.

The woman I spoke with had placed a lot of pressure on herself. She researched supplements and vitamins recommended for those with dementia. She went to online trainings for caregivers. She attended a support group to get tips on caregiving. She traveled to two different states to attend caregiving conferences.

She started cooking her husband meals based on some nutritional guidance she found online. And she knows she has to stay healthy to care for her husband, so she exercises for at least an hour a day.

Dementia had become a full time job for her.

And there wasn’t room for much more in her life.

So when he declined despite all of these efforts, all she could focus on was how she must not be doing the right things.

You can love someone and do all the right things.

No matter your efforts, dementia is progressive.

It progresses not because you did something wrong or you aren’t doing enough. Dementia progresses because it’s dementia.

We can’t beat ourselves up when someone’s dementia gets worse.

It’s not our fault.

Instead of making our goal to stop the progression of our loved one’s dementia, let’s make our goal to continue loving and caring for someone while they experience these changes.

Let’s empower ourselves to make decisions that promote quality of life for those living with dementia as their dementia progresses.

When I told this woman that dementia progresses and we can’t do anything to stop it, she said, “Wow. It’s kind of freeing to realize I don’t have the responsibility of stopping his dementia.”

And you don’t have that responsibility (or power) either.

I want to make you aware of some upcoming FREE Dementia Friends trainings I will be doing via zoom!

If you want to learn more about dementia and how to support those who living with dementia, please join me at the one of the following times:

Tuesday, June 3 at 5:30pm

Friday, June 6 at 9:30am

Monday, June 9 at 7:00pm

All times CT.

You can register for a session here: Dementia Friends Registration (free via zoom)

I have done some virtual cognitive screenings recently. And I have one important observation.

This should not be news to anyone, but people want to be listened to.

It’s not just about administering formal tests. It’s not just about assigning numbers. It’s about listening.

I have worked with several people who have been insisting to family and friends that there is something wrong with their brain. But their loved ones make comments like, “Everyone forgets stuff,” or “I think I’m more absent-minded than you are.” In other words, their concerns are dismissed.

People think they are being reassuring when they say things like that to those who are concerned about cognition. It’s not reassuring. It’s frustrating.

How do you feel when you express a concern and you aren’t listened to?

When I do cognitive screenings, I tell people that I trust their observations of their own brain. After all, they’ve had that brain their whole life.

If they tell me something is wrong, I believe them. I don’t know if it’s dementia. Maybe it’s depression, anxiety, a physical health condition, or a sleep disorder. Perhaps it’s a result of a stressful marriage or excessive alcohol use.

But when you tell me something is wrong with your brain, I believe you.

You know how your brain works. And, sure, there are cognitive changes that occur as people get older….typical age-related change.

Maybe you forget to get gas in your car. I’m not too worried about you, but if you forget how to get gas, I am concerned.

If you call your kids by the wrong name occasionally, I don’t think much of it. But if one of your kids tells you that they are Carrie and not Kelsey–and you don’t believe them–I’m concerned.

Not every moment of forgetfulness means dementia is on the horizon, of course. But if you are insistent that your brain is significantly changing and impacting your daily function, I want to talk about it. I want to know what’s different than 2 or 5 years ago. I want to know why you are concerned.

As dementia progresses, many individuals are not reliable reporters of their own symptoms. However, I find that many people in earlier stages are quite helpful in their own diagnostic process if we only listen.

A gentleman I know went to his doctor’s office and asked for a cognitive assessment. He had been concerned about his confusion for several months, and it took a lot of mental energy for him to make this appointment.

The doctor asked him a couple of questions and then asked him to draw a clock. At the conclusion of the test, the doctor reassured him that his responses indicated he was “normal” and left the office.

And that was that. He paid his co-pay and drove him.

He was never asked for his perceptions of how his brain was changing. He was never even asked why he wanted a cognitive assessment.

And it’s too bad. Rather than leaving the doctor’s office with a sense of relief, he left feeling unimportant.

He felt like a score or a number. Not like a human being.

He scored fine on a test. Therefore, he was fine.

But he didn’t feel fine.

I do consulting work at nursing homes, assisted livings, and memory care communities. And sometimes it’s a hard crowd.

Employees don’t want someone to come in and tell them what they are doing wrong. That’s not my goal, of course, but when someone has to come in for a training on their day off, they are a little wary of me.

One of my goals is to make their jobs more fun. It’s that simple. When we have fun at work, we are more productive. Not just direct care workers….everyone.

Think about jobs you’ve had. Think about how productive you were at jobs you enjoyed versus jobs you didn’t enjoy.

At a facility, enjoying your job leads to better care and less turnover. It’s worth it to invest in finding ways to make work fun for your employees.

I would never say that it’s not challenging to work with those living with dementia. (And, I should add, that it’s challenging to live with dementia.) But I’d argue that there has to be some challenge to enjoy your job….because enjoyment at work increases when we have the satisfaction of overcoming obstacles and creating solutions. It feels good to pick up those wins.

And employees should get to celebrate those wins! That’s part of the fun, right?

One of the questions I ask senior living employees is: Within your job, what brings you joy?

Usually someone answers that getting paid brings them joy, and that’s okay. Senior living employees deserve to be paid for the hard work that they do. We know that those who are paid more generously provide better care to residents.

What else brings employees joy?

Connecting with someone.

When I help someone do something that is fun for them.

Making someone smile when they don’t smile a lot.

Helping someone achieve a goal, even if it’s like walking to the bathroom alone.

Calming someone down they were anxious.

These are all responses I have gotten. And I love these responses!

Why? Because we can work on strategies to do these things — things that are enjoyable — more!

How do we make residents smile more? I love the idea of making residents happier, but if we can work on strategies to help staff make residents smile more, it’s great for the resident and also staff. Let’s talk about how to make that happen.

How do we calm down those with dementia when they are anxious? I can teach skills to make staff more effective in alleviating anxiety. That means residents are less stressed, and it also means staff get to celebrate a win. Let’s talk about some methods of anxiety reduction.

I am not sure I’ve met anyone that enjoys every single task they do for their job. Think about jobs you’ve had. Maybe you didn’t like the paperwork, or perhaps you didn’t enjoy the public speaking you had to do. But it’s usually something, right? (And if you’ve had a job where you enjoyed absolutely everything you did, email me at dreshbaugh@gmail.com. I might consider a career change.)

I tell the college students that I teach that you are doing well in life if you like 70% of the tasks you have to do as part of your job. If 30% of your tasks are not enjoyable, you can typically tolerate that because you enjoy other tasks.

The more you enjoy those other tasks, of course, the easier it is tolerate the rest.

Let’s face it. There are parts of working in senior living that aren’t always pretty. It can be difficult and exhausting work.

How do we help staff provide better care and keep them in the field?

We focus on supporting them in finding joy in their workdays.

When people think of dementia, they don’t think medical condition.

They think stupid, crazy, dependent, weird, senile, and a bunch of other negative stuff, but usually not medical condition.

I am puzzled.

Why do so many people not realize dementia is a caused by a medical condition?

I teach a college class called “Families, Alzheimer’s, and Related Dementias.” I created the course at our university and have taught it for over 10 years.

I have had several students start this course with impressive misconceptions about dementia. (If they ended the course with those same impressive misconceptions, it’s no one’s fault but my own.)

One student frequently spoke in class about how her grandma was faking dementia. Why was she convinced that her grandma was faking dementia? Because her grandma would fail at a task (like vacuuming) but then be able to do it later. If she really had dementia and forgot how to vacuum, how could she remember later? It didn’t make sense to this student, so she assumed her grandma was faking.

It took me half a semester to convince her that dementia doesn’t progress in a linear fashion. People with dementia, like other people, may forget things but remember them later.

I’ve had students who thought that dementia was a punishment for transgressions earlier in life. There was a student who insisted that you only got dementia if you didn’t believe in God–despite much evidence to the contrary. I think she was convinced this wasn’t the issue when I did a video panel of individuals with dementia and one was a minister.

Several students implied that if you were a smart person and tried hard you’d never show symptoms of dementia. If only people could “try” their way out of dementia.

I was once asked, on the first day of class, if I knew that most of the crimes in the United States were committed by people with dementia. I realized later that this student thought dementia was another term for poor judgment.

That’s only a handful of the misconceptions I’ve heard over the years.

Now I teach this course online rather than in-person. The misconceptions keep coming….only now they manifest in emails and discussion boards.

I may sound judgmental but I am not intending to come off that way. Most of my students are 18-24 years old, and what they know (and don’t know) about dementia is a reflection of what we’ve taught them.

Being a college professor makes you hyperaware of what “kids nowadays” don’t know. (I swore I’d never be that professor but here we are.)

Basic writing. Basic math. And all that….

(Me the other day: “How do you get to college and not know how to call and make a doctor’s appointment on the phone?”)

That’s not where I am going with this.

I’m talking about what people know about dementia when they come to college.

I have learned that kids don’t learn a lot about dementia and much of what they do learn is scary and plagued with negative stereotypes.

This is even true of kids who have had family members with dementia.

Our support group often tells me that members of their families are resistant to talking to the kids about dementia.

Please talk to the kids about dementia.

Please.

When we don’t talk to kids about things, kids make those things more frightening than they need to be.

And, trust me, the kids know something is going on. They always do.

If you don’t know how to talk to kids about dementia, find one of the kids’ books out there (we keep a list!) and read it to the kids.

We are willing to do Dementia Friends trainings for K-12 classrooms. Kids can even earn a certificate that they can put on the fridge.

We need to start educating about dementia the same way we educate about other health issues.

It starts with ending the stigma. It starts with stopping the whispering.

It starts with understanding, as a society, that dementia is caused by medical conditions.

It starts with knowing that a person with dementia is not stupid.

It starts with cultivating the idea that people living with dementia have worth and purpose.

It starts with raising kids in a culture that sees the value in those living with dementia.