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.

Many people tell me they are dreading the day that their loved one with dementia no longer remembers them.

We think of that as one of the cruelest moments of the disease process.

A husband no longer knows his wife.

A mother no longer knows her daughter.

But as dementia progresses, there typically isn’t that one moment.

Maybe someone knows your name but doesn’t seem to know that you’re their wife.

Maybe someone seems to know that you’re their husband but doesn’t know your name. Or calls you by another name.

Maybe someone knows you’re their daughter but calls you by the name of their sister. Or the name of your sister.

Maybe someone doesn’t know who you are to them or your name but their face lights up when you walk in the room.

I recently overheard a conversation between some of our support group members. Many of them said they didn’t know if their partner knew who they were.

This deal of someone knowing or not knowing who you are….it’s not that simple.

A woman once told me of how she feared her mother with Alzheimer’s would forget her. Her mother became more confused and she knew that day was coming.

She would walk into the memory care community to see her mother. Her mother would look up from the TV and give her a questioning look.

“I’m sorry,” her mother would say shamefully, “I think I should know you but I don’t.”

The daughter would introduce herself and the mother would continue to sadly apologize.

One day the daughter walked in and her mother smiled at her and said, “Well, hi there!”

And the daughter realized that not only did the mother not know who she was….she didn’t know she should know who she was.

There was no more shamefulness. There were no more sad apologies.

Her mother just thought a new friend was visiting.

The moment that she feared wasn’t the worst moment of the disease process.

It turned out to be okay. Even a relief.

Her mom had been confused about who she was. Now she wasn’t confused. She was sure of who she was.

A new friend.

If you love someone with dementia, dementia still progresses.

If you learn as much as you can about dementia, dementia still progresses.

If you could provide perfect care to someone living with dementia (which is impossible), dementia would still progress.

You can do everything right. But you still don’t beat dementia.

Your loved one’s dementia getting worse isn’t because:

You lost your patience.

You’re not doing enough puzzles or activities.

You’re not “good enough” at caregiving.

We do not have control of how dementia progresses, but there’s a lot of info out there that causes us to second guess ourselves…

You see stuff about stopping dementia progression with certain diets or overpriced puzzles. Things pop up on Facebook that tell you how to be a better caregiver.

I have suggestions for people living with dementia and their caregivers. If people implement every single one of them, dementia still progresses.

Why? Because dementia progresses.

Even the newest drugs on the market for those in the earlier stages of Alzheimer’s do not cure Alzheimer’s. They may slow progression, but there is still progression.

I know I sound negative here and that’s not my intent.

My intent is to tell you to take a breath. My intent is to tell you that shouldn’t blame yourself when dementia progresses. You could not have done anything to stop the progression.

Let me tell you something that medical experts agree on: dementia has its own path. It moves according to its own rhythm – not because of anything you did or didn’t do.

On your very best caregiving day and on your hardest day when everything feels like it’s falling apart, dementia does what dementia does.

Your best is good enough. But it’s not going to cure dementia.

I was asked how to get a guy to keep his shirt on.

You see, this man (that I will refer to as Gene) had dementia and lived in a facility. And his wife was upset he wouldn’t keep his shirt on. He’d take it off, throw in on the floor, and when someone would try to help him put it back on, he’d fight it. It was the only time he wasn’t the gentle human being he had always been.

A friend of the wife contacted me to ask what they should do.

I asked why it was important that he keep his shirt on. And it was obvious that the woman thought this was a ridiculous question.

I thought perhaps Gene was trying to go outside in brisk weather without his shirt, but that didn’t seem to be the case.

I thought maybe Gene was trying to eat in the dining area without a shirt, which would be a health code violation. I was told that he ate in his room. In fact, he spent almost all of his time in his room.

So why was it so important that he keep his shirt on?

I was told that Gene had visitors. And this is why it was so important he keep his shirt on.

The grandkids would visit, and his wife didn’t want them to see him without a shirt. It could be awkward for the grandkids, his wife said.

His former co-workers would visit, and Gene being shirtless would make them uncomfortable.

I pointed out that maybe his former co-workers would accept that Gene was just more comfortable without a shirt right now.

I was told that Gene was a retired business person who was well-established in the community. He had been a significant mentor to some of the co-workers who visited, so it wasn’t a possibility he could choose not to wear a shirt around them.

I asked why Gene preferred not to wear a shirt. It seemed as if no one had considered why he kept taking his shirt off.

Dementia impacts a person’s temperature control. Perhaps he took it off because he was warm. Dementia affects the tactile sense. Maybe the fabric was uncomfortable or itchy against his skin.

It seems that Gene’s family thought he was taking off his shirt to “give them a hard time.”

The conversation was about how the grandkids and his co-workers and his friends might be uncomfortable if he didn’t wear a shirt while they were visiting. And his wife seemed to feel uncomfortable at the thought of how Gene being shirtless might make others feel awkward.

What about Gene’s comfort?

Gene was obviously uncomfortable wearing a shirt.

But no one really seemed to consider his comfort.

To me, this is similar to trying to get someone with cancer to stop coughing because the coughing might make others uncomfortable. We all know that’s ridiculous.

But is it equally ridiculous to get Gene to keep his shirt on when he’s in his own room?

I tried to gently explain my thinking. Is this a battle that’s worth fighting? If Gene fights when someone tries to put his shirt on, there’s obviously a reason he doesn’t want it on, even if he can’t express that reason.

At the end of this conversation, I was told that the decision would have to be made that Gene not have visitors until he was willing to keep his shirt on.

Because you wouldn’t want the visitors to be uncomfortable.

A friend of mine, Paul, was diagnosed with frontemporal dementia this fall.

Let me tell you a little bit about Paul. He’s a smart guy. He has a master’s degree. He is in his mid 60’s and retired a couple of years ago.

He was at the doctor for what he thought was likely depression. He had found that in recent months he had become apathetic–toward pretty much everyone and everything.

He wanted to be sad that his brother had cancer, but he really wasn’t. He thought he’d be devastated when his dog died, but he felt relief that he wouldn’t have to pay for dog food any more. And he didn’t care if he ate or showered. Some days he didn’t even brush his teeth.

While many people with this type of dementia don’t recognize their own apathy, Paul found it strange. When his brother died and he couldn’t feel empathy for his brother’s wife or kids, he went to the doctor.

He thought he’d be referred to a psychiatrist, but he was sent to a neurologist. His doctor didn’t mention dementia when he sent him to the neurologist. He figured the neurologist was going to prescribe an anti-depressant.

It took 4 months to get in to see the neurologist. The neurologist came in for less than 4 minutes and said he was ordering some imaging. It took over a month to get in for the imaging. There was also some insurance snafu somewhere in the process.

After the imaging, he waited a few more weeks before seeing the neurologist again. The neurologist said he had frontotemporal dementia. Paul said the doctor was in the room longer this time, perhaps 7-8 minutes. A sympathetic nurse patted his shoulder as he left the office.

Paul, who has never married, went to all of these appointments alone. He wasn’t given any resources to read. He wasn’t referred to a social worker. He was told he had frontotemporal dementia and sent home.

He didn’t know who to tell. He told me in an email. He gave me permission to write this blog post (as long as I didn’t call him by his real name).

I asked who else he had told. He told me no one, but he did plan to tell his sister-in-law. He just didn’t know exactly what to tell her because he didn’t know much about frontotemporal dementia.

He said he didn’t want to Google it (and I can’t blame him). He was scared he’d get information that was frightening and didn’t know if he’d be able to face it. He also wasn’t sure where to get reliable information.

I answered a few questions in an email. I told him that his diagnosis was terminal and gave him some numbers of life expectancy while reminding him that those were stats based on thousands of people. He was an individual and his progress would be unique. I was resentful that I was the one who had to deliver this news.

When he left the neurologist after diagnosis, they guided him in making a follow-up appointment that was six months in the future. However, he felt lost after walking out of the office and called them the next day. He asked for an appointment in the next few weeks so he could ask some questions. He was told there were no appointments available.

I wish the story of his diagnosis were uncommon. I wish it was rare that someone would have a poor experience through the diagnostic process. But it’s not.

It’s a story I hear a lot.

I wish health care providers had more time to sit down with individuals and families during the diagnostic process. I wish people living with dementia and their loved ones could get their questions answered in their provider’s office. I wish they could easily schedule follow up appointments. I talk to too many people who tell me that their experiences have been disappointing, at best.

My dementia simulation team and I have started producing folders for health care professionals to give to those who have been diagnosed with a type of dementia. Getting health care professionals to actually give them out has been more challenging than it should be.

We want to connect with individuals and families after diagnosis to tell them about our own support group and other support groups in our area, to give them referrals for counseling, and to let them know about potential other resources that are available.

I am sad that the need is so urgent.

We have to do better.

And, I do mean “we.”

I used to spend a lot of time thinking about how other people should do better…but in recent years I’ve realized that I am included in the people who should do better. My students and I strive constantly to work with health care providers to give individuals and families a better experience in diagnosis. We know the problem is systemic rather than something for which we should blame individual providers.

Sometimes I feel like we are making progress.

But I continue to hear stories like this.

We are working on it.

I have a group of graduate and undergraduate students who are committed to supporting families impacted by dementia. They are enthusiastic, smart, and passionate about what we do.

I fully believe they will get out into the field and improve experiences for those living with dementia and their loved ones.

But it’s a long road.

We try projects and programs. Sometimes they work, and sometimes they flop.

We will keep going. We don’t have unlimited money, and we don’t have unlimited time, but we are investing what we’ve got into this effort.

Empathy. Education. Empowerment.