You know that I love a good list, and I get excited when I have an opportunity to make a list.

So here was the opportunity….

Someone recently asked me to make a list of 10 things that most people don’t know about dementia. That’s a specific number, and I couldn’t narrow it down to 10.

Here is my list of 17 things you may not know about dementia:

1. Dementia affects mobility: Dementia can impair motor skills, making it difficult to walk or perform physical tasks.

2. It can cause hallucinations: Some types of dementia, like Lewy body dementia, more commonly cause hallucinations, but hallucinations can occur in other types, like Alzheimer’s and vascular dementia.

3. It’s not just about genetics: While family history can increase risk, many lifestyle factors also contribute to the development of dementia.

4. Social interaction is crucial: Being socially active can help reduce the risk of dementia.

5. Sleep problems are common: Many people with dementia experience sleep disturbances, including insomnia and daytime sleepiness.

6. It can affect vision: Dementia can impair visual perception, making it difficult to judge distances or recognize faces.

7. It’s a leading cause of death: Dementia kills more people each year than breast cancer and prostate cancer combined.

8. Mixed dementia is common: Many people have more than one type of dementia, such as Alzheimer’s combined with vascular dementia.

9. Dementia affects women more than men: Women are disproportionately affected by dementia. They are more likely to have dementia and also to be both family and professional caregivers.

10. It can lead to nutritional deficiencies: People with dementia may forget to eat or have difficulty swallowing, leading to malnutrition. People with dementia may also overeat and gain weight.

11. Dementia can cause changes in taste and smell: This can affect appetite and food preferences

12. Dementia can affect language skills: Some types of dementia, like primary progressive aphasia, primarily affect language abilities.

13. It can lead to social withdrawal: People with dementia might withdraw from social activities due to confusion or embarrassment

14. Poverty is related to an increased risk: People living in poverty are significantly more likely to develop dementia, regardless of genetic risk.

15. Education matters: Lower educational attainment, often associated with poverty, is a known risk factor for dementia.

16. Blood tests can help to diagnosis Alzheimer’s : Blood tests can identify biomarkers like beta-amyloid and tau proteins, which are associated with Alzheimer’s disease.

17. Changes in sensation can occur : As dementia progresses, individuals may lose the ability to accurately interpret sensations like heat, cold, and pain.

I am curious: Which of these dementia facts did you NOT know before reading this list? What do my team and I need to do a better job of emphasizing during our outreach and education efforts?

What additional information would be useful for families and individuals living with dementia that we might often overlook?

Your feedback is invaluable in helping us improve our support and educational programs.

Pronouns.

Today we are talking about pronouns.

What do pronouns have to do with dementia?

Let me tell you a story.

I went out with a friend last night. We were talking about two guys we used to work with. Let’s call them Ben and Brad.

She told me that one of them did something not-so-ethical a few years ago. As the story progressed, I realized it was actually quite a few not-so-ethical things. He managed to commit several transgressions against his family, his friends, and his workplace. And I was not impressed.

However, I didn’t know who to be unimpressed with.

We had been talking about Ben and Brad. Perhaps at the beginning of this story my friend had clearly stated which man she was referring to. And I had forgotten. Or not heard in the first place–we were at a noisy restaurant.

Or maybe she didn’t clearly state which person she was speaking of but assumed I’d know.

Anyway, I found myself–three minutes into this story–hoping she’d use his name rather than he/him/his. And, as the story went on, I hesitated to ask because I was embarrassed I didn’t know. I felt dumb for listening and reacting throughout the story when I wasn’t even certain who we were talking about.

Please tell me something similar has happened to you. Tell me that you’ve been in the midst of listening to a story and had some uncertainty about who the story was about because…pronouns. I’m not the only one this has happened to, am I?

Think about this in reference to individuals who are living with short term memory loss. When we use pronouns, we assume the person we are talking to can remember throughout the conversation who “he” or “she” refers to. For those with short term memory loss, this may be a big ask.

What is the purpose of pronouns?

You might be better off asking someone with an advanced degree in language, but I’ll give it a shot.

Pronouns avoid repetition. Instead of repeating a noun, we use pronouns to refer back to it. For example, instead of saying “John went to John’s car because John forgot John’s keys,” we say “John went to his car because he forgot his keys.”

However, pronouns can sometimes create confusion if it’s not clear what or whom they are referring to. For example, in the sentence “Alex told Jordan that they were late,” it’s unclear whether “they” refers to Alex, Jordan, or someone else.

Processing pronouns requires cognitive function to link the pronoun back to the correct noun. This can be taxing for someone with dementia, who may already be struggling with cognitive overload.

And it can lead to misunderstanding.

I remember a situation where a woman with dementia was upset with her family because they told her that her daughter would be coming in the evening. When the daughter didn’t show up, the woman asked where she was.

The family told her that she wasn’t coming….she had never planned to come and no one had mentioned that she was coming. The woman accused her family of lying to her.

“But this morning at breakfast you said she’d be here tonight!” the woman said.

The family realized that they’d had a long conversation over breakfast about a woman who was coming to drop off some quilting supplies. They weren’t sure exactly what time she would be over with her quilting supplies, but they knew she would be there after 5pm and before 8pm. They talked about who would be home when she arrived, and whether or not she would stay long.

She. Her. She. She.

Before this conversation, the woman had been talking to a family member about how her daughter had a new job. She must have thought that the following conversation also referred to her daughter.

This mix-up highlights a common issue for individuals with dementia: the difficulty in tracking conversations that involve pronouns. 

Keeping this in mind–how can we improve communication and minimize misunderstandings?

Whenever possible, use the person’s name instead of pronouns. For example, say “Bill went to the store” instead of “He went to the store.” Reinforce who you are talking about by repeating their name throughout the conversation.

In addition, consider your use of “there” and “here.”

Instead of saying “Go in there,” say “Go in the bathroom.” Instead of saying, “Maya is coming here,” say “Maya is coming over to your house.”

And “it.”

Trying saying, “Please give me the brush,” rather than “Please give it to me.”

While we are talking about communication, it’s not a bad idea to go over some more general tips as well:

–Repeating important details can help reinforce understanding. For example, “We are going to the park at 3 PM. Yes, we will leave for the park at 3.”

–Avoid complex sentences and jargon. Use language that is easy to understand.

–Use yes/no questions or questions with limited choices. For example, “Would you like tea or coffee?” instead of “What would you like to drink?”

–Speaking at a slower pace and enunciating your words can help the person process what you are saying.

–Allow the person extra time to process information and respond. Avoid rushing them.

–If possible, use pictures, gestures, or written notes to support your verbal communication. Visual aids can help clarify your message.

–Sudden changes in topic or context can be confusing. Providing clear transitions and context helps.

–Speaking too quickly can make it hard for the person to process information. Slowing down and pausing between sentences can help.

–Frame statements positively. For example, instead of saying “Don’t forget your coat,” say “Remember to bring your coat.”

— Break down complex tasks into smaller, manageable steps. For example, instead of saying “Get ready for bed,” say “First, brush your teeth. Then, put on your pajamas.”

–Try to have conversations in a quiet, calm environment to reduce background noise and distractions.

–Show that you are listening and engaged by maintaining eye contact and using encouraging body language.

–Periodically ask if the person understands what you are saying. For example, “Does that make sense?”

Communication is fundamental for humans, and its importance is magnified when it comes to individuals with dementia. Effective communication can significantly enhance the quality of life for those living with dementia. Small changes in our communication strategies can decrease anxiety and maximize connection.

And people with dementia deserve that.

Did you watch Ted Lasso? If not, you should. It’s happy, and watching it made me happy.

One of the pieces of wisdom shared in the show is “Be a goldfish.” Ted Lasso encourages his players to adopt the mindset of a goldfish, which is said to have a 10 second memory.

Why would a person wish to have a 10 second memory?

I don’t know about you, but I’ve done some dumb stuff I wish I didn’t remember. My memory of these dumb things has stopped me adventuring in certain directions days, weeks, months, years, and decades (multiple decades) later.

Have you ever been up late at night and remembered something stupid you said more than 20 years ago? (Maybe something you said at school when you were in the 7th grade? Oh dang, that was actually thirty years ago.)

Or maybe you’ve been sitting at work focusing on a project when you thought about how you failed miserably at a similar project 5 years ago? Now you are doubting every decision you make.

Perhaps you remember incidence from your childhood that you wish you could forget. Maybe someone didn’t treat you well. And their words have stuck with you into adulthood.

Maybe you had a traumatic experience that continues to impact you. You’d love it if your memory of that experience would dull but it remains detailed and clear.

It would be great if you could focus on the present and stop dwelling on the past. It’d be wonderful if you could appreciate where you are now without comparing it to where you used to be.

I ran at least one half marathon a year from 15 years straight, but about five years ago I started having nerve pain in my back that prevented not only running but walking more than a block without pain. I still have a good life… but it’d be better if I could forget how much much I enjoyed running.

Today I was looking at some research on programs for dementia care partners. My team and I focus on supporting and educating care partners, and I was curious what other universities have such an emphasis and how they were doing research to determine effectiveness. I was surprised to see a study on a care partner education program that looked at its level of effectiveness by measuring the memory of the person with dementia.

One of their goals was to improve (or at least slow the decline) of memory by educating the care partner.

Hm.

I have a lot of goals for the programs we have, but there is one BIG one. We want to improve care partner quality of life. And, through improving care partner quality of life, we want to improve quality of life for the person living with dementia.

I don’t see memory as necessary for a good quality of life for someone with dementia.

First, we are setting ourselves up for failure if our goal is to improve memory for those with progressive conditions that impact memory. Let’s not do that.

Also, there are times when being a goldfish is okay, or perhaps better.

Years ago I spoke to a man in early stage dementia. He talked about how he had a pretty good life currently. He knew he needed more and more assistance. He knew he was forgetting, but that in itself didn’t bother him.

“I would be happy with the person I am now if I could forget the person I used to be,” he told me.

I remember thinking that he would probably forget the person he used to be, eventually. I didn’t know if pointing that out was the best way to comfort him so I didn’t say anything.

Many times people will tell me that they visited their loved one with dementia and they were having a good day.

But what is a good day?

Usually, they tell me they knew that their loved one was having a good day because their loved one remembered them. Or they knew the month. Or they remembered the town they used to live in.

Do any of these things really indicate a good day?

Sure, maybe they were cognitively a bit sharper than usual, but so what?

Were they happy? Were they smiling? Were they laughing?

Were they enjoying their favorite things? Were they comfortable and pain-free?

None of those factors depend on memory.

Quality of life doesn’t depend on memory.

Once I overheard a woman with dementia tell her daughter upon seeing her, “I don’t remember who you are but I am so happy.”

Maybe sometimes remembering is overrated.

Things are hopping at the Dementia Simulation House.

In an effort to increase empathy for those living with dementia, we gear people up to experience the condition while we give them a few household tasks to accomplish.

This year alone we have done more than 165 group simulations with a total of almost 800 participants.

We are open to the public. Community members. Students. Caregivers. Professionals. Everybody.

People often make the assumption that most of the professionals who come to the house are in healthcare. However, we work with professionals in various fields–here’s a very short list:

Electricians, election officials, mental health counselors, heating/cooling professionals, hairstylists, social workers, interior designers, human resource professionals, pastors, nuns, theater students, fundraising professionals, engineers, insurance agents, bank tellers, city employees, dental hygienists, K-12 teachers, librarians…and so on.

Do health care workers need more education on dementia? Absolutely.

But those in other fields also need dementia education.

Because people with dementia don’t only have health care needs. They are complete and complex individuals, just like the rest of us.

They have the same needs as other people….to get their hair cut, to have their teeth cleaned, to live in homes that are updated and work for them, to vote (if they so choose), to go to social events, to be supported and to have their families supported.

4/5 people with dementia do NOT live in facilities. They live alone, with their partners, or with family/friends. Some are housing-challenged and live on the streets or rotate between the couches of friends.

We greatly overestimate the percentage of those living with dementia who are in nursing homes or memory care. Keep in mind that dementia can be a slow moving beast. Perhaps someone has dementia the last 10 years of their life. It is common that they may spend the final year or couple of years in a facility–but quite a bit of that journey occurs in their own home.

When we assume that most people with dementia are living in a nursing home, we forget the need to educate people in our community about dementia. And we shortchange those who have dementia and their families.

In a month or so, we will be training the 1st restaurant on our community main street to be Dementia Friendly. We’ve made four hair salons and several banks/credit unions in our community Dementia Friendly. Currently, we have 5 faith-based local communities who have done our Dementia Friendly training. And, we have recently connected with our county auditor’s office about ways to make voting more accessible and less stressful for those with dementia.

Our favorite story is about a group of electrical contractors who found us a while back. They wanted to do the simulation, and we signed them up. Upon arrival, we asked them why they wanted to participate.

They had multiple stories of startling people who had just invited them into their homes to do work. Customers who thought they were their sons or nephews–or thought they were intruders. Confused husbands who accused them of having affairs with their wives. Contractors from other companies who appeared to be taking advantage of people financially.

We liked these guys right away. And signed them up to become a Dementia Friendly business.

Not that long ago, a woman came to do the simulation. We asked her why she was there.

She told us some electricians had been doing some work in her house. They noticed some stuff about her husband and had a conversation with her. And, yes, the electricians told her that she needed to look us up and come for a visit.

That’s community.

And we are proud to be a part of change in our community.

You can learn more here: https://csbs.uni.edu/family-aging-counseling/centers-initiatives/dementia-simulation-house

I have been thinking about my most popular posts. The ones that I often get comments about when I see people at Target. The ones that people thank me for.

And recently it’s been two posts.

One is about making the decision for a loved one to live in a facility.

And the other is about how it’s normal to feel relief when someone dies.

They have something in common. Both of these posts reassure people that they are good people.

Your husband lives in a nursing home? You’re not a bad person.

Your mom died and you are relieved? You’re not a bad person.

I am grateful if these posts could give some level of reassurance to caregivers. You make the choices you have to make and you feel the way that you feel. I am happy to validate that as many times as I can.

But I am sad that you need such reassurance, friends.

Someone told me that they were glad I told them it’s okay that their spouse lives in assisted living…because their family constantly tells them it’s not okay.

A man told me that he often thinks he’s a terrible husband for placing his wife in a nursing home. And there are people in his life who seem to think he is a terrible husband–including his daughters

A women told me that she was happy to hear that feeling relief (among dozens of other emotions) when her mom died didn’t make her horrible. Of course it doesn’t make her horrible.

I am just sad she thought even for a moment that it might.

We doubt ourselves as caregivers. Are we doing the right thing? Are we feeling the right thing?

We don’t give ourselves enough grace. We are human beings doing the best that we can. And despite our best, dementia still progresses. People still live in nursing homes. People still die.

I heard from a man once who thought he wasn’t doing a good job as a caregiver because his mom’s dementia was getting worse.

Of course, it was getting worse; it’s progressive. Your best doesn’t change the course of the disease. It doesn’t prevent progression or stop the need for more care. It doesn’t keep people alive forever.

I don’t know how to say that you are enough. I don’t know if I can say it in a way that makes you believe it. After all, I am a stranger to most of you. Just a person sitting in her bedroom in Iowa typing on a laptop at 11pm.

And you are a person. Somewhere else. Reading this.

I don’t know your situation. But if the thought that you’re not enough, that you’re a bad person, that you aren’t feeling the right emotions in this process, creeps in even just a little, take a deep breath.

You’re doing okay. You’re a good person.

Yes, you need help. You need support. Don’t be afraid to ask for it.

There’s this self-care thing we talk about. I’m not going to lecture you on self-care. When I tell you to improve your self-care, I am on the edge of victim blaming. I believe that it’s our systems and communities that often result in your struggle. Not your lack of self-care (as much as I want you to do things to care for yourself).

We can do a better job of supporting you. You are going to need support. And you may need to ask for that support more than once whether you are asking for family or professional help. I am sorry about that.

Think about what you’ve learned as a caregiver. Maybe a better way to navigate the healthcare system or how to modify your home for dementia. You will learn more stuff as you go. Don’t forget to give yourself credit for learning.

You are a good person who is doing something hard. You can do hard things.

I just wish you didn’t have to.

Hi everyone–just a heads up about a Zoom presentation I am doing tonight:

GeroZOOM–Research on Dementia Care Partners: An Overview with Dr. Elaine Eshbaugh

July 30; 7-8 pm CST via Zoom

Free–must register in advance

This is a Zoom presentation that explores multi-faceted research on the impact of being an unpaid or family care partner for someone living with dementia. Dr. Elaine Eshbaugh, professor of Gerontology at the University of Northern Iowa, will discuss findings from recent large-scale studies of care partners with an emphasis on spouse/partner caregivers.

Register here: https://www.surveymonkey.com/r/TPX5569

You will be emailed a Zoom link approximately one hour before the presentation. 

My team and I take a strengths-based approach to dementia. This is what I teach my college students and promote when I have speaking engagements. Focus on the strengths of the individual living with dementia in the moment. We emphasize “what’s left” rather than “what’s gone.” And we will continue to do that, but it’s also important that we acknowledge the losses.

If we don’t acknowledge the losses, are we really listening?

The loss of driving. The loss of employment. The loss of marital intimacy. The loss of independence. The loss of physical ability.

Someone I know is mourning the loss of being able to read.

Someone else is mourning the loss of being able to go for a walk alone.

Those are legitimate losses. Care partners sometimes struggle to acknowledge these losses because they are mourning their own (also legitimate) losses.

There are just a lot of losses. And, despite our best efforts to appreciate a person with dementia in the moment, the losses are present and we can’t dismiss that.

My friend who is no longer able to go for walks alone is being told by friends and family that it’s okay….he can go for walks with other people. But he doesn’t want to go for walks with other people. He wants to go for walks alone. And don’t even mention getting a treadmill. He has no interest. It’s not okay.

And, for my other friend, there’s just no substitute for being able to read. So many people have told him that he can listen to audiobooks. He doesn’t want to listen to audiobooks. He wants to read books. And no one around him is acknowledging that loss because they think the substitute, the audiobooks, should fill that void. But it doesn’t. Not for him, anyway.

We find these alternatives for things people can’t do anymore. They seem reasonable to us. We present them with a smile, like we have all the answers. We don’t have all the answers, and sometimes our attempts to pretend these aren’t losses or that they are no big deal is insulting to those living with dementia.

Sometimes, perhaps it’s better to be with someone as they experience the loss.

Everyone has aspects of their identity that are related to certain activities, hobbies, or abilities. He’s a voracious reader. He loves to go hiking alone on the trails. She’s a cyclist. She’s a fantastic cook.

Think about yourself. What aspects of your identity would be hardest to lose? Would you be able to find an adequate alternative? Yeah, I didn’t think so.

You like riding horses? Sorry you can’t do that anymore, but you can watch other people ride horses. It’s pretty much the same, right?

You like volunteering at the hospital? Sorry you can’t do that anymore, but here are some things you can cut and color and we’ll take them to the hospital for a bulletin board. It’s pretty much the same, right?

There can be a lot of life (and good life) after the diagnosis of Alzheimer’s or another dementia. One of my favorite sayings….there is something between diagnosis and death…it’s called life. (I like to think I made it up but I probably stole it from somewhere.)

Talking about these losses doesn’t change that. Loss can be experienced in the same breath as joy, laughter, and love. But the loss is there.

And as hard as we try, we can’t take away that loss.

Does Joe Biden have dementia?

Sigh.

I don’t know. I am not his physician, and–as reminder–dementia is a medical thing and not a moral deficiency, a sign of stupidity, or a lack of effort.

But what I will say is that I am over people using the term dementia to insult him. Or to insult anyone.

Dementia, my friends, is not an insult. Dementia is caused by diseases of the brain.

It doesn’t matter if you love or hate Biden.

You wouldn’t insult someone by saying they had cancer or asthma. Why do we try to insult people by saying they have dementia?

I am not looking for a political battle here, and this isn’t a political post. This is about our society’s attitude toward dementia. We make fun of people with dementia in ways we would never make fun of people with other illnesses.

Think about it. If Biden had dropped out of the race because he had cancer, people would show more sensitivity. Even his political enemies (for the most part) would wish him well…whether they were sincere or not….because that’s what you do. It would be in bad taste to mock someone with cancer. But it’s apparently okay to mock someone with dementia.

When we do Dementia Friends trainings in our community and across our state, two people will come in together, and one will point at the other, say they are here because he/she has dementia, and laugh. They are making a joke. They are at a dementia training joking that someone has dementia. We roll with it and hope that the training will make them realize that this is a joke that isn’t funny to us.

I recently posted something on social media about dementia. In the comments, someone typed “Joe Biden” and put a laughing emoji. I guess I didn’t get the joke.

We poke and point and tease and say people have dementia. Ha ha ha.

We still have a long way to go in educating people about dementia and reducing the stigma.

A daughter tells us she sits in the parking lots and cries after visiting her mother at the nursing home.

I don’t know what to say.

A woman tells us that she is afraid of her husband. He has dementia. Sometimes he gets confused and thinks she’s an intruder. She worries he will attack her.

I don’t know what to say.

A mother says she doesn’t have enough energy to care for her teenage kids as well as her own mother who lives with Alzheimer’s.

I don’t know what to say.

Someone who has been recently diagnosed with Alzheimer’s tells us he went to a counselor who told him that “motivation” would be the key to beating this disease.

I don’t know what to say.

And that’s okay. Sometimes there are no “right” words. There is no advice to be given. Sometimes it’s enough to be there.

To listen.

Many of us are people of action. We want to fix. Dementia isn’t fixable.

We didn’t cause it. And we can’t fix it.

But there are these small victories along the way.

A man tells us that his wife who lives with dementia has discovered that she really enjoys painting. He buys her supplies, and she’s engaged all day.

I smile.

A son says that his mother no longer remembers who he is but rather thinks he is an old friend who’s driven across the country just to visit her. She gets excited when he walks in, and they have great visits.

I smile.

Someone mentions that they put up a sign in their house that directs their grandmother to the bathroom. She’s having fewer accidents.

I smile.

My smile doesn’t change anything, but I share in their celebration. I love celebrating those small wins with people.

That’s what it’s about. Being there for the bad stuff. Celebrating the good stuff–no matter how small or inconsequential it might be to the rest of the world.

I think about what my team and I do, and it’s a lot (because my team is amazing and ambitious). Dementia simulations. Dementia Friends trainings. Making businesses and organizations dementia friendly. Having resource tables at community events. Creating folders for healthcare providers to give to patients living with dementia and their families. Hosting a weekly support group.

But, in a way, we’ve never changed anything. We’ve never cured dementia in a single person. We’ve never prevented anyone from having dementia. Caregivers still experience stress and depression. They still struggle. They still burnout.

We’ve been ineffective in changing any of that.

And, if I can say this, we are good at what we do.

But what is that we do?

Sometimes we don’t know what to say, and we listen. We smile with people when they get a win.

We really don’t change anything. But we are there.

That’s the thing. Dementia is hard.

But you don’t have to be alone in this.