Tag Archives: dementia

The People You Don’t See When You Picture Dementia

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What does dementia look like?

Not figuratively—but literally?

When you picture a person with dementia, who do you picture?

Typically, we think of frail old people, looking confused, completely dependent on others, living in nursing homes, unable to carry on a conversation.

We rely on stereotypes to decide what certain groups “look like,” and people living with dementia are no different.

You should know that 10% of those with dementia are under the age of 65. Only about 20% live in a nursing home, assisted living, or memory care at a given time.

Some are in the workplace. Many are serving our communities with purpose and living lives of meaning. Some people with dementia have depression, but others do not.

They are just as diverse as the rest of us.

I remember a holiday season about 25 years ago. We were visiting my grandmother. She was working at a liquor store. She came home from work on Christmas Eve and let us know that–for the first time–she had some gay customers at the liquor store.

My grandmother was open-minded. She was not at all bothered about her gay customers, but she was really convinced that this was the first time she had gay customers.

She had a picture in her mind of how gay people would appear, and apparently this was the first time anyone fit into the box. Statistically, it would have been virtually impossible that these were her first gay customers.

I’ve had people who are waiters in restaurants tell me that they’ve never waited on anyone living with dementia. At one point, I tried to convince the owner of a bookstore to make his business dementia friendly. He told me that no one with dementia had ever been to his bookstore.

And there was the time that I had a conversation with a manager at a hotel about ways to make travel more dementia friendly.

“It’s not like people with dementia actually travel. I’ve never seen one at this hotel,” he said.

We still lack understanding that there are people with dementia living in our communities–just doing their thing. They aren’t wearing special bracelets and they aren’t labeled with tattoos.

They are just people, like the rest of us.

My team is passionate about doing dementia education for those who work in residential senior care.

But it can’t end there.

We need communities to start understanding that people living with dementia are among their residents.

They’re not really unique or special. We should not patronize or underestimate them. A diagnosis does not erase a person’s values or humanity.

When we talk over them or assume incompetence, we create barriers that are as limiting (more limiting) than the condition itself.

I get frustrated with the “before and after” dementia narratives. Those stories reduce a person to a single decline arc and imply that everything meaningful existed only in the past–before the dementia. A more honest approach focuses on adaptation: what has changed, what remains, and what kinds of support are helpful.

That same thinking shows up in how we expect dementia to be visible and obvious. When we rely on decline-based narratives, we also start looking for a certain “look” to confirm our own expectations.

Dementia does not have a look.

The sooner we stop searching for visual markers and start assuming variability, the closer we get to communities that actually know how to include people living with dementia.

When the Holidays are Hard

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If you are in the midst of the holiday season and are impacted by dementia, I see you.

I know a lot of people don’t get that you might be having a difficult time. If you were impacted by cancer, they’d be more likely to check in.

But when it comes to dementia, they either don’t know what to say or (worse) don’t even think about you.

There’s nothing I can say to make that better.

If your holiday season has been a little bit rough and didn’t go as you’d hoped, I can’t make that better either.

Maybe your interactions with family and friends were strained. Or maybe the stress of the holidays exacerbated dementia symptoms. Perhaps the holidays made you think about just how far dementia has progressed in recent months.

The holidays can be disorienting for people living with dementia. Loud rooms, unfamiliar routines, expectations that may seem confusing—all of it can be overwhelming.

If you didn’t have a great holiday, it’s okay to admit that. People will ask about your holidays–and no matter how they were, we usually say something like, “They were good” and smile.

It doesn’t seem acceptable to say that the holidays were hard.

But sometimes the holidays are hard. They are hard for a lot of people. They can be hard for the dementia community.

For many families, the holidays aren’t just emotional difficult—they’re logistically exhausting. Dementia adds layers of planning and decision-making that no one else notices.

Sometimes the hardest part isn’t what happened this holiday, but what didn’t. Grandma didn’t buy presents. Dad didn’t make it to the family party. Your husband didn’t even think about putting up the tree.

Keep in mind that you can be grateful that someone is still here and still grieve what has been lost. Those things can exist at the same time.

And perhaps what you’re feeling isn’t just sadness about what has already changed. It’s grief for what you know is coming. Anticipatory grief.

Anticipatory grief can feel confusing, especially during the holidays, because from the outside everything may look intact. All the decorations are up. The table is set. Presents are opened.

But inside, you may be carrying the weight of noticing things others don’t:

  • A loved one who no longer follows the conversation
  • A tradition that feels overwhelming
  • A moment that should feel joyful, but instead feels heavy

And then you wonder if this is the last holiday for….something. Maybe it’s someone’s last holiday on earth. If it’s not, it could be the last year they live at home. It could be the last year they know it’s Christmas. It could be the last year they recognize the grandkids. Or the last year they can participate in making pie.

Anticipatory grief during the holidays is often invisible. There is no ritual for it. No clear language. No accepted way to say, This season hurts because I know what’s ahead.

So people smile. They say the holidays were fine. They move on.

But if the holidays felt heavier this year—not because something dramatic happened, but because something quietly shifted—you are not imagining that.

If this holiday season left you feeling tired, sad, or unsettled in ways you can’t quite explain, you’re not alone. Many people in the dementia community carry this grief quietly. You don’t have to minimize it.

Dementia doesn’t pause for the holidays. Sometimes the holidays demand more from people who already have little left to give.

If this season felt heavier, it doesn’t mean you failed. It means you are living in a reality that deserves more understanding than it gets.

I see you.

AND THE GUILT.

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If you’re caring for a partner with dementia, hear this: You are not alone in your guilt.

You feel guilty.

Guilty for feeling lonely, even while your spouse sits right beside you.
Guilty for missing the conversations you used to have with your partner.
Guilty for wanting just one day when you don’t have to be the responsible one.
Guilty for snapping, for sighing, for thinking, I can’t do this another day.

Sometimes the guilt cuts even deeper:

  • Guilt over placing your spouse in a memory care community.
  • Guilt for making promises you have not been able to keep.
  • Guilt because your wedding vows echo in your ears—in sickness and in health—and you feel like you’re failing.

You are not failing.

Dementia can be a cruel thief. It steals conversations, shared memories, inside jokes, quiet comfort, and the daily rituals that make a marriage feel like home.

But here’s what it can’t steal: The fact that you have loved, and that you still love, even if that love looks different now.

Your love isn’t gone. It’s changed. But it’s still there.

Placing your spouse in care doesn’t mean you’ve stopped loving them. It means you’re protecting them. It means you’re protecting both of you.

Needing space doesn’t mean you’re abandoning them. It means you’re human.

You are grieving losses that happen while your spouse is still physically here—a grief that’s invisible to many around you. The stuff that makes your heart drop….it doesn’t even make sense to other people. And maybe you’ve stopped even trying to explain it to them. This is your journey, and it’s unique.

So if guilt is knocking on your door today, gently remind yourself:

You’re still here.
You’re still loving.
You’re still trying.

That’s enough.

And you deserve compassion, too.

More Education = Better Care!

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I am happy to do dementia trainings for various sectors, but I am always honored to be asked to train staff at nursing homes and memory care communities.

I am honored because the employees I work with are generally CNAs or resident aides, and I would argue that how well they do their jobs is one of the most important factors–if not the most important factor–in quality of care.

Has it ever occurred to you in nursing homes and assisted livings that the people who are paid the least have the most direct contact with the residents?

I am continually amazed at the varying levels of dementia knowledge of employees.

I am surprised by how much people know. I am surprised how little people know.

And level of knowledge, anecdotally, doesn’t seem to be related to experience in the field.

In the state where I live, employees who work with those living with dementia have to do an online module to learn about dementia and meet the state requirement. And that’s it.

If you or a loved one are considering care, a great question to ask is, “What type of ongoing dementia education does your staff receive?“

Research shows that facilities that invest in more dementia education for staff provide better care to residents. That’s not surprising, is it?

Dementia education….works.

Training programs for staff have been shown to improve staff-resident interactions, increase staff empathy for residents, and create more meaningful engagement with those living with dementia.

Dementia education increases staff knowledge, improves attitudes toward people with dementia, and boosts confidence of those providing care. They not only benefit residents but also positively impact staff by increasing job satisfaction and reducing burnout. 

If you want to look at the research studies, let me know, but the evidence is overwhelming.

Dementia education is linked to improved dementia care.

There is research about what types of education and delivery methods are most effective. When I plan a training, I go back to this research in designing something to meet the needs of the facility. I don’t deliver a cookie cutter training.

Not surprisingly, standard online modules (aka cookie cutter trainings) are not recommended as the best form of dementia education. However, I understand that facilities are challenged by staff turnover. I can’t come to your facility every week to train new employees. I get it.

Facilities are doing the best they can with the challenges and limitations that exist in the industry. Long term care is incredibly complicated.

Dietary staff, CNAs, resident aides, maintenance, and everyone else….You are doing a hard job and we need to give you the tools to succeed. And I want you to enjoy the important work that you do!

A friend of mine recently went with her father to explore an assisted living that serves those living with dementia. Her father is in the early stages of Alzheimer’s and wants to put a plan in place. (Can I just say–good for him!)

The assisted living was beautiful. A grand lobby. An enviable coffee bar for the residents. The resident rooms were spacious.

My friend, at my suggestion, asked what type of ongoing dementia education is required for staff.

She was told that they do an online module within 30 days of their start, and then yearly they must complete more online training. That’s in compliance with the state law.

My friend asked if they had opportunities for ongoing education. The response was that there was a lot of stuff out there on Tik-Tok now that shows how to “treat dementia people.”

After more conversations with other employees from the community, she was not convinced that providing excellent dementia care was a priority.

She heard some of the employees using non-dementia friendly language in chatting with her.

“Dementia person”

“Dementia sufferer”

“Senile”

People who work in facilities like this should be educated on dementia friendly language.

Despite the beauty of the building, they decided it wasn’t a fit.

While it is frustrating that some nursing home employees have a low level of knowledge about dementia, that lack of knowledge isn’t their fault. People know what we teach them. Let’s teach them.

Here’s the thing about work trainings. They can be dry and boring. I promise that I am not dry and boring. I may be weird and loud but not dry and boring.

I want employees to leave MORE excited about working with residents. I want to teach them to find the joy in their jobs and celebrate the wins. I want them to gain confidence and know that their employers in investing in them.

It’s not just about what I do, of course. There are other qualified individuals who do dementia education. (Make sure you check their qualifications and education!)

Turnover among nursing home employees in challenging for communities. If we can get people to enjoy working with those living with dementia, turnover decreases, the facility saves money, and staff provides better care.

To communities that make continuing education a priority…you deserve recognition. People should know that you are taking steps to invest in and educate your employees. Please talk about this when you market your community. It’s important.

Your commitment to education and, consequently, providing better care is admirable.

Empowerment in Action: Culture Change through Dementia Education

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Just a reminder that there are still some seats available for the Empowerment in Action conference on June 11.

I’m excited to talk about dementia and anxiety, and there will also be sessions on improv and dementia as well as how to de-escalate challenging situations. The day will end with a panel of individuals living with dementia.

This is a great opportunity for professionals as well as those who have a loved one with dementia. A student rate is available.

We are offering CEUs for Iowa nurses as well as social workers.

See below for more information as well as an opportunity to register!

Wednesday, June 11
8:30 a.m. – 2:30 p.m.
Hilton Garden Inn | 7213 Nordic Drive, Cedar Falls, Iowa

Join us for a unique opportunity to engage and share insights about how to improve quality of life for those living with dementia and their care partners. 

We will explore the following topics:

  • Dementia and Anxiety: Understand the relationship between dementia and anxiety, and explore effective strategies for minimizing anxiety among those living with dementia.
  • Dementia and De-escalation: Learn techniques to de-escalate challenging situations and foster a supportive environment for individuals living with dementia.
  • Creating Dementia-Friendly Communities: Discover how to build inclusive communities that support individuals living with dementia and their families.
  • Improv Principles in Dementia Care: Explore how the principles of improv can enhance care practices and make interacting with those living with dementia rewarding and fun!

Participants will leave the conference with:

  • An increased understanding of dementia care practices that enhance quality of life and empower individuals living with dementia and their care partners.
  • A commitment to person-centered approaches that emphasize empathy, education, and empowerment. 

Together, we can create a brighter future for individuals living with dementia and their caregivers.

You can learn more and register for the conference here: Empowerment in Action

The Who, When, and How: Telling People You Have Dementia

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Sometimes I have to check myself.

Sometimes I attempt to make things simpler than they are.

Once in a while, I am asked by someone if they should share their diagnosis of Alzheimer’s or another dementia with family, friends, co-workers, or community.

Example: A while back I chatted with a couple. The husband had been diagnosed with Alzheimer’s. They were uncertain about who they should tell. In the six months since diagnosis, they had told no one–not even their kids or closest friends.

They asked me if they should tell people.

I said yes.

I didn’t say, “Shout it from the rooftops,” but I might as well have.

When I spoke with them again recently, I asked who they had told. They looked at each other and seemed to not want to admit to me that they hadn’t told anyone.

My first thought was to tell them it was time. So I did.

It was time to tell others so others that others could support them.

But then I stopped. I realized that I sounded like I was disappointed in them. Like they were kids who had not done their homework.

I had to back up and think about all the reasons why it’s hard for people to disclose a diagnosis of Alzheimer’s or another dementia.

When I told them to tell people, I was ignoring a host of contextual factors.

So why don’t people disclose their diagnosis?

  1. Some people are just private people. And once the news gets out there, it’s out there. You can’t take it back.
  2. Individuals living with dementia may fear that disclosing their diagnosis will lead to others questioning their independence or capabilities.
  3. Each person copes with a dementia diagnosis differently. For some, keeping the diagnosis private allows them to process their feelings without external pressures or judgments. It may take some people longer to open up about the diagnosis.
  4. In some cultures or families, discussing health issues may be seen as inappropriate.
  5. A dementia diagnosis can feel like a loss of control over one’s life. Keeping the diagnosis private allows individuals to maintain some level of control over their situation.
  6. Maintaining a sense of normalcy in daily life can be crucial for individuals with dementia. They may want to continue engaging in social activities, work, or hobbies without other people reminding them that they have dementia.
  7. Many people fear that disclosing a dementia diagnosis could alter the dynamics of their relationships. They might worry that friends and family will treat them differently—either with excessive concern or a lack of confidence in their abilities.
  8. Individuals may choose to keep their diagnosis private out of a desire to protect their loved ones from emotional distress.
  9. Let’s face it. There is still a stigma that comes along with dementia. It’s a medical condition–yet many associate it with incompetence and lack of intellect.

And, for all of those reasons and others, I have to understand that I cannot tell people what they should do.

I want to encourage people to let others know when they need support. You can’t expect support when people are in the dark.

And yet, I cannot dictate the who and the when and the how.

Also, in my perfect world, when you tell others you have dementia, you get support. I know that’s not always true. Sometimes you tell people and they let you down.

I did happen to ask that couple why they had not told anyone about his dementia. Their daughter was getting married in a few months. They wanted to wait until after the wedding.

I wanted to tell them they should tell people before wedding in case they needed a little extra support during that time….. but I didn’t.

Because I don’t get to tell them what they should do.

Empower Dementia Strategies: Zoom Consultations for Families

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By request, I’ve decided to start doing a limited amount of Zoom consultations for families impacted by dementia…and I started a company called Empower Dementia Strategies.

I’ll also be doing trainings and consultations for senior living facilities, as well as creating handbooks, manuals, and other resources for employees who work in dementia care.

I’m still working on branding, social media promotion, and all the other stuff I need to do that I’m not that good at. I am knowledgeable about dementia and relatable when I talk about it, so perhaps I won’t get too fancy with the marketing and will allow my reputation to speak for itself.

You can read more here: https://elaineeshbaugh.org/consulting/

And if you are interested in doing a Zoom consultation with me, you can fill out this form: https://forms.gle/AnrVt7oeE4y3ugTE6

Feel free to email me at dreshbaugh@gmail.com.

Dementia Friends Zoom Training (February 17 @ 6pm CST)

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Hey all!

I will be doing a zoom Dementia Friends training through Dementia Friends Iowa (https://dementiafriendlyiowa.org/) on Monday, February 17, at 6 pm CST.

What will you learn at a Dementia Friends training? We will cover the basics of dementia, how it affects people, the different types of dementia, key signs and symptoms, and most importantly, how to interact with and support something living with dementia.

You can sign up here:

Sign up for virtual Dementia Friends!

If this session doesn’t work for you, you can find more opportunities here with various (and awesome) trainers across the state:

Become a Dementia Friend!

What does it mean to be caregiver?

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What does it mean to be a caregiver?

It means rearranging your work schedule at a moment’s notice.

It means taking a deep breath and walking away before you explode.

It means advocating to healthcare providers.

It means staying calm in a crisis.

It means lowering your standards for the cleanliness of your house.

It means educating yourself.

It means adjusting to change.

It means rearranging your home.

It means rearranging your life.

And it also means….

Development of new skills.

An opportunity to make a difference.

Strengthened relationships.

Enhanced problem-solving abilities.

Opportunities for creativity.

A sense of purpose.

A chance to support others in similar situations.

Nothing is all good, and nothing is all bad.

You may be eager for your caregiving phase to be over. Then, when it is over, you want it back. You’d give anything to go back in time and give your loved one a bath again. Even though you hated giving them a bath.

You may experience increased frustration with your loved one, while at the same time you feel your love for them growing. As one caregiver told me recently, “I love her more than ever but I don’t want to be around her in this moment.”

You may want the support of your family, but the type of support they are capable of providing enrages you–and you want nothing more than for them to leave you alone. You don’t care if you ever hear from them again.

It’s a lot.

It’s complex.

It can be negative and it can be positive all at once.

It’s okay if you don’t know what you feel.

When people ask you how you are doing, you couldn’t be honest if you wanted to. You don’t know how you are doing.

You aren’t sure about your own health. You think you might have the flu, or are you just tired? Do you need to take a COVID test?

You aren’t sleeping. Is that because of anxiety? Maybe fast food has become a staple. You wish you cared about your own health. Sometimes you just don’t have the energy to think about yourself.

People are telling you to take care of yourself but they aren’t doing anything to help you take care of yourself. They haven’t offered to stay with your loved one or run any of your errands. But they said things like, “Honey, you really need to think more about your own health.” How helpful.

The people who you thought would be supportive aren’t that supportive. Or maybe they’ve gone AWOL. Even worse, perhaps they are physically present but oblivious to your challenges and sacrifices.

If you are lucky, there are people who step up for you. Often they aren’t the people you expected to be there. You try to focus on them rather than the people who aren’t there.

And in all of it, there are these moments that are somehow good. Maybe not good like good used to be. Maybe good in a different way. But good.

You take your mom to the emergency room and despite it being an overall terrible experience, there’s a nurse that is kind and empathetic and a great listener. There’s a woman at support group who invites you for coffee. There’s a neighbor who buys you a bottle of wine when she’s at the store or a co-worker who is more than happy to cover your shift.

Your primary care doctor takes a few extra minutes to talk about how caregiving is impacting your health. Your brother isn’t much help with dad, but his wife brings dinner by a few times a week.

Maybe your loved one goes to bed and you sit alone watching a sitcom and drinking a diet Coke. And you realize life isn’t so bad.

Perhaps your loved one finds something funny and can’t stop laughing. You don’t know what’s funny and you don’t care. You laugh.

You visit the nursing home and see that there are nurses and CNAs who care about your dad and find him to be grateful and cooperative (even though he is neither of those when you are around).

You realize that your wife enjoys coloring books. Or folding napkins. Or watching the Game Show Network. And it keeps her happy and occupied and anxiety-free.

There are moments when you really think you are going to get through this.

Dementia and the Decision (aka When Can My Loved One No Longer Live at Home?)

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I predict I will get some mean messages over this one. Some of you will message me and say that you hope my kids put me in a nursing home.

Well, the joke is on you. I don’t have kids.

Here goes.

Placing your loved one in a memory community, assisted living, or nursing home is often an act of love.

It is rare for a someone living with Alzheimer’s or another dementia to stay home through the end stage of dementia. And, when they do, it is generally because the family can afford extensive amounts of paid in home care or the family is large, flexible, and committed enough to provide 24/7 care.

But let’s talk about when there is one primary caregiver who does not have paid in-home help and has family and friends who, even though they can provide occasional respite, are not able to provide day-to-day care.

Maybe they live far away. Maybe they live close and have time commitments such as kids and work. Perhaps there are emotional or physical reasons they can’t step in to provide day-to-day help. Or, there might be four sons who live within a mile that are just unwilling to stop by and stay with their mom while their dad goes to the grocery store.

Most of our homes are not designed for someone living with dementia…most of us are not trained to provide extensive medical care…maybe you are at risk of an injury in providing physical care to your loved one…(maybe your husband weighs 230 pounds and you barely hit 120)…I could go on.

There is a point where someone living with dementia should not be left home alone. There’s no universal rule for when this occurs, but I would argue that if someone could not pick up the phone to call 911, you should strongly consider whether or not they should be home by themselves.

What are the requirements you might use to determine if a child is able to stay home alone? Can they use the phone? Would they wander away from the home and not find their way back? Will they have substantial panic when you leave or when they remember you aren’t there?

And when someone with dementia is unable to be home alone, caregiving needs are substantial and (I would argue) impossible to meet if there is one caregiver without support.

There are times in life when the optimal decision doesn’t seem that great. Sometimes the best decision is the least bad of a bunch of options. Making a decision for someone to move to a nursing home or assisted living? Perhaps it’s one of those times.

Of course, you might hear that people move to facilities and immediately the progress of of their disease quickens. Sure, that happens, but there is a bit of error in thinking here. You usually place someone because they are declining, and when they continue to decline, we blame the facility. Maybe they are declining because this is a progressive disease process.

Trauma can exacerbate the disease progress, and we often wait until a trauma (a fall, getting lost, etc.) happens to place someone in a facility. Then the change in environment happens in the center of a trauma, and the dementia brain struggles more than it would have with this change of environment.

There should be no shame in placing your loved one in a facility. My dad was in a nursing home in at the end of his life. In fact, he was in 5-6 of them (some bad and some better) over his final six months. He was not thrilled to be there.

“Shoot me before you put me in one of those places,” he used to tell me. I’d tell him I didn’t love him enough to spend the rest of my life in prison. That, my friend, is the extent of a heartfelt conversation among the Eshbaughs. Maybe you can relate.

There were a lot of reasons he could not have lived with me at the end of his life. Physically, it would have not been possible. He was about 6′ 4”. I have chronic nerve pain in my back and have a spinal cord stimulator. I would have been useless in trying to help him move and transfer. My husband is strong, but he’s not a big guy, and there’s no way he could have moved my dad around without help.

We could not have afforded significant hours of in-home care, even if we could have found someone for the job, which is unlikely. And there’s this small detail of us having jobs. I don’t know how we’d pay for the house if one of us didn’t work…and there’s that health insurance thing. Neither of us could quit our jobs to provide care.

I haven’t even talked about relationship dynamics here–which is another issue entirely.

Whenever I hear someone say, “I could never put someone I loved in a place like THAT” I cringe. It’s a really insensitive and ignorant statement. And I won’t just smile and change the subject when someone says it. I am going to point out the reasons why people have to make this choice because I am not okay with how society shames those who place their loved ones in a facility.

Sometimes people thrive in facilities. Sometimes their quality of life improves.

Wives can be wives again–rather than just caregivers. Sons can stop arguing with their moms about bathing. Family can be family. Professional caregivers can take on some of the battles. Family can be the good guy in that whole good guy/bad guy dynamic.

If you have to make the choice to place a loved one in a facility, my heart is with you. It’s not easy. And you will feel…..everything. You will grieve. You may feel relief. And you may feel tired—because you’ve given every bit of energy you’ve had to keeping someone at home–and when they are no longer at home, you crash. You need to rest. That’s normal.

It’s also normal to feel like you betrayed someone. You didn’t.

Sometimes the caregiver dies before the person living with dementia. And sometimes that is indirectly attributed to costs of caregiving–stress, poor diet, compromised sleep.

I know a man with Alzheimer’s who told his wife after his diagnosis that knew he’d die from Alzheimer’s but they couldn’t let his Alzheimer’s kill her as well. He didn’t want them to give his Alzheimer’s any more power than it had. And she kept that in mind when it was time for him to move to memory care.

I have to say this…sometimes getting someone to a facility isn’t easy. Maybe you fib to get them there. Perhaps they are angry and don’t talk to you for a few weeks. I know of situations where law enforcement was involved. It may not be pretty. I’d tell you not to take it personally but that’s easier said than done. So I’ll just tell you that you’ll get through it.

Stop feeling shame. Stop feeling guilt. You are doing the best that you can. You kept your loved one at home as long as possible, and now it’s not possible.

And in this strange world of dementia, you sometimes have to make choices that wouldn’t have made sense to you previously.

You aren’t a bad person. You are just trying to love someone through a set of pretty challenging circumstances.