The post below is a beautified transcript of The Alzheimer's Podcast Episode 82: Getting Past Stigma and Shame in Dementia.


Wait, Didn’t This Get Fixed Already?

Dr Alzheimer discovered what is now known as Alzheimer’s disease in 1906, thanks to 55 year old Auguste D, one of his patients at the Royal Psychiatric Clinic of the University of Munich who asked that he study her brain upon her death.  

Dr Alzheimer is best known for this research, although he made other significant contributions in his workplace. These include the  groundbreaking idea of talking to his patients and banning their restraint; requiring staff to treat patients humanely; to interact with them; and to assist them with personal care.

Although he introduced practices to reduce stigma and improve quality of life for those he directly affected, stigma and shame around dementia still exists today.

In this episode of Navigating Rough Terrain with the Dementia Sherpa, we’ll take a look at the stigma cycle and what we can do to get past it 113 years later.

Spoiler alert! This is a beehive in my bonnet, so I totally hop onto my soapbox, but I made plenty of room for you too. 😉


Don’t Make Eye Contact!

I had a booth at a women’s expo in 2014, or 108 years after Dr Alzheimer introduced stigma-reducing practices. The expo had something like 10,000 attendees.

I was just down the row from the ovarian cancer center. It’s hard to know who had the less popular booth, me or them. No one wanted to talk to us at either of those booths.

It was like people thought if they even made eye contact, they’d catch ovarian cancer, or catch Alzheimer’s. For the record, neither are communicable diseases. I know, that seems obvious.

Someone develops Alzheimer’s every 65 seconds. And that’s just Alzheimer’s. That doesn’t count all the other causes or types of dementia.

But because I’m going on my 18th year of doing this work, I can fall into the trap of thinking there can’t possibly be anyone left on the planet who doesn’t know the basics of dementia.

And that’s when I really need to remind myself that someone develops Alzheimer’s every 65 seconds. And that’s just Alzheimer’s. That doesn’t count all the other causes or types of dementia.

There are always brand new family care partners out there who need support and information. Sharing accurate information is one of the best ways we can get past stigmatizing dementia.

But it feels like a vicious circle, when no one even wants to make eye contact with you, let alone talk to you at your booth.  


Hop into My DeLorean

Speaking of vicious circles, I found a really useful graphic that I’m including in the show notes. It illustrates this cycle of stigma.

The stigma cycle of HIV/AIDS also applies to dementia

I saw it and remembered 1985. I was 15 years old then, and so excited about going to spend part of the summer with my Auntie in San Francisco.

Growing up in the Central Valley in California, going to San Francisco, going to the City, made life exponentially more exciting. Cooler weather, getting to see real, live yuppies that I’d only read about in Newsweek, visiting the DeYoung and Palace of the Legion of Honor.

I couldn’t wait to go spend long hours in the main library and then head to North Beach for a cannoli and espresso. I was practically vibrating with excitement.

But hop in my DeLorean and let’s go back in time to 1985. You’ll recall this is when the internet wasn’t a thing, when you got your news from your local paper and news station, when if you were really curious about the world, you watched the national nightly news and read Time magazine.


She doesn’t even recognize me, so what’s the point?

This was also a time when there was a massive, widespread stigma about HIV/AIDS, and the people who had it.  This quote sums it up:

“As an outreach worker in North Carolina in the early ‘90s, Michelle Spence, a housing case manager at the foundation, saw that HIV shame and stigma “held many people hostage,” and caused many to die alone, “in isolation from loved ones, children, and partners.”” (

That reminds me of when people living with dementia don’t get visitors anymore. Many of the people who’ve known them for years will say things like, “I don’t want to remember him that way,” or, “She doesn’t even recognize me, so what’s the point?” as though it’s all about them, as though the fact they’re talking about a living human is irrelevant.


The Danger in the Stigma Cycle

But back to 1985. In comparison to the access to information we have now, there wasn’t a lot of information out there back then about HIV/AIDS. What was readily available outside of major urban areas wasn’t so much fact-based as much as fear-based.

When I started in long-term care--less than 20 years ago--people were still tied to chairs....100 years after Dr Alzheimer banned the restraint of his patients.

Just round ‘em up…

The idea of quarantining everyone who had HIV/AIDS, or might have it, or was at risk of having it, was floated publicly. My friends wondered if it was a good idea I was going to San Francisco, if it was safe to be on the bus or if I’d catch HIV just by riding the Muni.

Educated people, people with access to accurate information, people who paid attention knew that wasn’t how the virus was transmitted. 15 year-olds in a small town didn’t.

Obviously, we know HIV/AIDS is a communicable disease, so this isn’t a perfect comparison when we’re talking about dementia. But the stigma cycle is very relevant.

It’s gross when we go back and think about it now, think about how people with HIV/AIDS were treated 35 years ago. And I think it’s a useful analogy, too.

…Or tie ‘em up

When I started in long-term care, less than 20 years ago, people were still tied to chairs. Certainly not the majority of people, but I witnessed with my own eyes people tied to chairs 100 years after Dr Alzheimer banned the restraint of his patients. Any person tied to a chair in any year is one person too many.

A combination of ignorance and fear almost assuredly leads to bad outcomes for vulnerable populations. It’s brutal for those directly suffering the consequences, of course.

But it also has an impact on witnesses. They feel such shame because of what they’ve seen that they tend to one of three outcomes. They turn into advocates, to make it stop. Or they push down the experience and deny anything bad happened. Or they twist it into a sick justification for continuing to stigmatize and discriminate.

Stigma isn’t just bad; it’s dangerous. It swings the door wide open to discrimination.For that reason, I think it’s useful to look at the parts of the stigma cycle (ignorance, fear, stigma, discrimination, silence) using our Dementia World lens, to see how it affects our people and come up with ways we can change it and get past it.



The stigma cycle starts with ignorance, which shouldn’t be confused with dumb. It’s just a lack of knowledge.

A good example–one I hear a lot– is when someone says, “My dad has dementia but thank God it’s not full blown Alzheimer’s.” Except, that’s not the way that works. How it works is Alzheimer’s causes dementia. So if someone has Alzheimer’s, they definitely have dementia.

The best analogy I've heard: All poodles are dogs, but not all dogs are poodles.

However, someone could have dementia but not have Alzheimer’s. There are multiple causes of dementia. Alzheimer’s disease is the most prevalent, and the one most people have heard of.

The best analogy I’ve come across is this: all poodles are dogs, but not all dogs are poodles. Likewise, all people with Alzheimer’s disease have dementia, but not all dementias are caused by Alzheimer’s disease.

The reason I went down this little rabbit trail is because that’s the type of thing that, if you’re new in Dementia World, you could hear something like “it’s not full-blown Alzheimer’s” and get the wrong idea.



The next part of the stigma cycle is fear. One of the most common ways I see this expressed is when people try to make a joke. I think people do that because they have so much fear about developing dementia themselves.

I also get the nose scrunch (when people act like they’ve just smelled something vile), although not nearly as much as I used to. Now it’s usually a sorry attempt at a joke or some variation of, “Oh my gosh, how can you stand it? That’s just so sad! I could never do that.”

For the nose scrunchers, I just say, “I really love what I do.”

People living with dementia are quite capable of joy, and laughing, and happiness.

I spend more time and effort with the “it’s just so sad” folks, because I need people to have a different idea about people living with dementia. I need them to know it’s important, how we talk about people living with dementia and how we perceive them.

The general public needs to know that people living with dementia are quite capable of joy, and laughing, and happiness. And people living with dementia have more opportunity to do and have and feel those things when the people around them know they have those capabilities.

And I really want people partnering with them to want to make the magic happen, or enable it to happen, rather than fall into a mindset trap of “Oh, it’s just so awful! There’s nothing I can do about it. There’s no use even trying.”


I don’t get the joke

As far as jokes go,  I’m still waiting for a hilarious Alzheimer’s joke to be invented. Currently, that joke does not exist in nature.

So when I’m in one of those awkward interactions where I say what I do and get a response of, “I think I’m getting that! Ha ha ha,” I respond with, “Oh, I’m so sorry. Have you been to the doctor yet?” That cuts off the laughter pretty much immediately.

I don’t say it in a bitchy way because if they’re serious, if they’re thinking, “Oh, here’s somebody who does this kind of work,” and they’re looking for kind of an entree to have a further conversation, I definitely want to be available to them for that.

And I also want to let people know that an appropriate response for thinking they might be getting dementia is to go to the doctor.

The other side of this response is if people really do think they’re making a funny, then I’ve helped them understand it’s not funny.

I get one way to look at it is, “Lighten up, Christy! They were just trying to make a joke.” The thing is, that’s also a great rationale for not speaking up when someone tells a racist, misogynistic, homophobic, or any other kind of so-called joke that degrades another group of people.

And if it makes other people uncomfortable that I’m not having it, I’m okay with that.

How we talk about people living with dementia and the words we use indicate how we think about them.

Worth and value

There are a variety of responses we can have. The main point being to let folks know this isn’t something that’s funny, and making fun of it or people who have this condition isn’t okay.

How we talk about people and the words we use indicate how we think about them. And we as care partners need the general public to think differently about dementia and the people living with it. This brings to mind another thing that I’ve heard hundreds of times. “If I ever get dementia, I’ll drive off a cliff. Jump off a balcony. Eat a shotgun. Swim out to sea.”

None of that’s funny, and I don’t think the people saying it are trying to be funny. The underlying message is, “If I get that diagnosis, life won’t be worth living. I won’t be a worthwhile human being. I won’t have value anymore.”

When comments like that come my way, I say, “I really hope you wouldn’t do anything like that. Where’s that coming from?” Because I think they do want to have more of a conversation there. And I also want to open the door, or at least crack the window, to the possibility that people living with dementia can have great quality of life.

Yes, they’ll need some assistance at a certain point to make sure that happens, but they can still have great quality of life. People living with dementia have worth and value and when they need an assist, that’s okay. That’s what we’re here for.



The dictionary definition of stigma is “a mark of disgrace associated with a particular circumstance, quality or person.”

That definition makes it even more absurd to me that we’re talking about stigma in relation to dementia. I don’t even know how there can be anything disgraceful about having a medical diagnosis.

Is it disgraceful to have imperfect vision?

How is it disgraceful to have a heart condition?

Why is it disgraceful to have bursitis?

I’m not sure where disgraced comes into it when we’re talking about a medical diagnosis. I think here is where we float into what sounds suspiciously like shame. Because there are a lot of people who erroneously believe that Alzheimer’s disease, or Dementia with Lewy bodies, or any of those causes or types of dementia, are psychiatric conditions or mental health diagnoses.

And so that’s where the stigma comes in.


Bonus Soapbox: Psychiatric Diagnoses

I'm not a psychiatrist, obviously. Psychiatry isn’t my wheelhouse, but dementia is. So I’d like to clear up a couple things. Number one, dementia conditions are not psychiatric diagnoses or any type of mental health diagnosis.

I make this distinction because people living with dementia are too often given medications approved for psychiatric diagnoses. Those drugs have an FDA double black box warning against using for people living with dementia.

Number two, and more pertinent to what we’re talking about today--let’s go ahead and call it a side-soapbox: psychiatric diagnoses, mental health diagnoses? Those are medical diagnoses, those are medical conditions.

It's all medical conditions!

I'm not sure at what point someone decided it was okay to have a problem any place in your body as long as it wasn't your brain. And if it is your brain, then that makes you less than.

What a load of hooey. No matter what medical condition may be happening in someone's brain, it’s still a medical condition. There is zero reason for that to create stigma.



Right around the corner from stigma is discrimination. Name-calling, saying, “They’re not like us,” all that nonsense. Oddly, there are still people who think just because they’re lucky enough to not have a medical condition happening in their brain that they’re somehow better, somehow superior, to people that do.

If you’re lucky enough to have a healthy brain, can you imagine what it must be like to not have one? To have a brain that lies to you? To feel like your brain is attacking you–can you imagine for a moment what that must feel like?

That’s not the time to be ostracizing people. It’s not the time to talk over them as though they have nothing worth saying. It’s not okay to talk about them in front of them, as though they’re a piece of furniture or a potted plant.


Seriously, it’s just communication!

Another huge problem with discrimination is it’s just a hop, skip, and a jump to using medications that are unnecessary. Because the mindset here is, “You know, they’re just acting out. They’re having behaviors. They don’t really know what’s going on anyway.”

Um, false!

They do. They know what’s going on for them is they have an unmet need.

When somebody is engaged in what is commonly called “behaviors,” or more accurately called nonverbal communication, they are desperately trying to let us know that there’s a problem.

They have an unmet need. Something is going on. They’re trying to communicate that to us as best they can.

And that’s when people living with dementia really need us to pull on our CSI hat and start looking for clues, figuring out what’s going on so we can help. Look at solutions specific to that particular thing that’s going on, not give them medication that’s going to make it even harder for them to communicate.


Oh, don’t mind him

Sometimes, as a guest speaker at a support group or event at a community, I have a person or two attending the event who’ve brought their person along.

That changes the dynamic of what’s going to happen next. Whether a person living with dementia is in the room or not, I’m not going to talk about anything in a way that’s an attack on their dignity. But I’m not going to talk about people as if they aren’t there.

And I’m not going to go along with it when I get comments like, “Oh, don’t mind him. He’s out of it. He doesn’t have any idea what you’re talking about anyway.”  

Because the thing is, I know. I know exactly what’s going on, and everybody else in the room knows exactly what’s going on too.

If I'm talking about someone in front of them, that is blatant disrespect. 

And that’s one of those situations where it can feel very awkward, but also where it’s important to let other people know why that’s actually not okay.

I talk about “bringing the Good Stuff” so often (respect, kindness, love, empathy, compassion), and I always tell you it’s so important because people living with dementia feel our energy, and energy is contagious.

In other words, they are aware.

That doesn’t mean they comprehend the words we’re saying (depending on where they are in the process), but if I’m talking about someone in front of them, that is blatant disrespect. That’s the energy I’d be bringing, and that’s why I don’t do it. I don’t want to further contribute to stigma and discrimination by doing things like that.

And I don’t want to give other people the impression that it’s okay.


That’s not just how it goes

There are so many areas where stigma leads to discrimination. Too often the justification is, “Oh well, you know, they have dementia. That’s just kinda how it goes.”

I’ve seen this in both communities and private homes. I know it can sound like I’m picking on communities. And yes, I’m definitely calling out the ones that offer subpar care.

But I want to be clear here that when I say communities, I’m not talking about only memory care. I’m talking about any type of long-term care setting. Memory care is often far better at addressing all of this than other types of care settings.

Whether it’s a community or a private home, it seems to me that ignorance is the root cause. Which, as we’ve covered, leads to stigma, which leads to discrimination.

Stigma leads to discrimination....It makes it easy to be dismissive of somebody's needs just because they have a certain medical diagnosis or condition. 

Please preserve their dignity

Oral care is a great example. Did Gabriella really not want to brush her teeth? Or did she forget to brush her teeth? Did her care partner remember to offer assistance, or did her care partner not know Gabriella’s at a point where she needs more assistance?

Making the assumption that people living with dementia just aren’t that into oral care leads to specific, concrete dental problems. It also sends the message, whether intentional or not, that people living with dementia don’t deserve good oral care anymore.

That’s what I mean about stigma leading to discrimination, when it makes it easy to be dismissive of somebody’s needs just because they have a certain medical diagnosis or condition.

Another area where I see this a lot is in appearance. Like, somebody gets up from a nap and they have total bedhead. Can we help them fluff it up in the back?

Or what if they’re wearing mismatched clothes?

A good question is always, What can we do that will preserve dignity?

How we pay attention to our people is another area worth examining.

Having the tv on nonstop is a way of saying, “You have dementia, so I can just turn on the tv and walk away. I don’t need to actually interact with you or pay attention to you as a human being.”

Likewise, only interacting when it’s to do with a care need.

And I don’t think anybody means to be sending that message. But when you take a step back, you can see how it can easily feel that way, how it can come across that way.



Silence is the final spoke in the stigma wheel, and it can be so pervasive. It happens all around us, for a number of reasons.

As family members, we don’t want to be a bother or cause any tension when our person lives in a community or is in the hospital.

We may feel shame about something, [think] that something our person is doing reflects poorly on us, shows a lack of skill or ability in us.

When it comes to questioning authority, why things are being done–or not being done–a certain way, we may believe that as family members, or direct care staff, we don’t have the right to do that.

We may feel shame about something, that something our person is doing reflects poorly on us, shows a lack of skill or ability in us. And this comes back to ignorance of how dementia works.

Dementia is where the brain is under attack for some reason. It could be Alzheimer’s disease, or Lewy Bodies, or Frontotemporal Degeneration (FTD), or any other cause of dementia.

The important thing to know is that our person is never intentionally doing something uncharacteristic, or acting in some way they never would have before dementia, in order to rattle our chain or make us feel bad or look bad.

What they’re doing is expressing themselves in the way they know how at that particular moment in time. They may be asking us for help or trying to show us they have an unmet need. They may be showing us how they feel in that particular moment.

It’s only about us to the extent that we understand how to respond in an effective manner, in a way that will help our person feel safe and secure and loved.


Let’s Avoid Getting Kneecapped

When we don’t speak up, if we stay silent, then we’re creating this vacuum where continuing to say, “Eh, they just have dementia. That’s just how it goes,” is okay. Where labeling people is okay, where discriminating against them is okay, where continuing to stigmatize them is okay. All because they have a medical condition. That silence is what can lead us into a shame spiral.

Beyond a shame spiral just feeling bad, another big problem with it is it kneecaps us of our ability to be an effective advocate for our person. And our people need us to be effective advocates for them.

When we don’t speak up, we’re not doing any favors for our person. We’re not doing any favors for the people who will come after them, people who will live with dementia after they do. And we’re not honoring the people living with dementia who came before our people.

That’s why it’s important for us to speak up, whether we’re family members, or direct care staff, or executive directors. Whatever our position or role in Dementia World, when we see something that doesn’t look right, we’ve got to say something.

And that really goes to, how do we change this? It can feel daunting, but it doesn’t have to be.

Nothing changes if we don't make others aware of what needs to change.

Simple steps to start

We can start with some simple steps, like checking in with ourselves. Asking, “Where am I in all this?”

You may be new to Dementia World and haven’t given any of this much thought. You may be feeling overwhelmed with everything else that’s going on right now. So this is now something in your awareness.

Or maybe you’re at a place where you recognize a lot of this. Maybe you’ve thought, “Yeah, if I got this diagnosis, I’d want to drive off a cliff. That’s exactly what I’m thinking!”

Any time is a good time to take another look at that, to see why you might still be feeling that way.

Years ago, Dr Ed McMahon led one of the best trainings I’ve ever attended. He said, “The Golden Rule in memory care isn’t do unto others as you would have done to you. It’s do unto them as THEY would want.”

He challenged us to not only deliver on that to every resident every day, but also to work every day to make dementia care as we would need to be if we were a resident.


What’s okay?

Another step is determining what’s okay with you and what’s not. Are things going as they should be with your person’s care and quality of life?

If not, what can you do that will move it toward where you need it to be, where your person needs it to be?

If things are going well and are on track, please don’t gloss over that. Take a moment to actually give yourself some credit, because you’ve accomplished a very big thing!

The third thing is piping up, which I’ve talked about a lot already.


Calling out inaccuracies

When others share inaccurate information, we need to say something. That doesn’t have to make it weird. It can be as simple as, “Hmm, I don’t think that’s right,” or, “Um, I’m not sure about that. I think that would be a good thing to look up.”

Ask for an explanation when somebody makes a joke. Do they really think they’re being funny, or are they in fear? Do they need more information? Some resources? Someone to talk to?

When you see a TV show or movies or books that are misrepresenting dementia, pipe up. Make a Facebook post, tag them on Twitter, write a letter. Whatever it is, just speak up and say something.

The joke in my house is we watch Chicago Med so I can scream at the TV. People living with dementia are often not accurately represented on that show. And I’ve written about that and why it gets on my last nerve.

Nothing changes if we don’t make others aware of what needs to change.


Ask questions

Another really powerful thing you can do is ask questions. I created the private Facebook group Tips, Tricks, and Tools for Dementia Care Partners four years ago so people could do that. Unfortunately, what I found is that people still want to email me or DM me questions rather than ask in a semi-open forum.

This seems like a good time to remind folks that you’re not the only one going through this! You’re not the only one listening to The Alzheimer’s Podcast. You’re not the only other member of the Dementia Sherpa tribe. And you’re not alone.

Asking questions is one of the best ways I know to increase your knowledge base while at the same time increasing awareness. Think how much we could all learn if we’d be willing to ask questions in a way where everyone could hear the answer.


A Cautionary Tale

Here’s a story that illustrates why correcting misinformation and speaking up is so important.

Several years ago, a colleague I really respected asked me to come with her on a consult. She felt like she wasn’t really getting through to this family, so reinforcements were indicated.

The wife was highly educated. She had a master’s degree plus advanced certification in her field.

That story literally makes me sick to my stomach. I didn't know what to say. I didn't have courage that day.

The husband had advanced Alzheimer’s disease. He used a wheelchair and didn’t initiate conversation, nor was he really able to speak (although he might say a few random words here or there).

He had retired as a very high-ranking executive of a faith organization. The couple met at college, a college run by the faith organization, and had both grown up as part of this faith community.


A lack of faith has consequences

This particular religion taught that illness or disease is caused by lack of faith. So for someone to have a diagnosis of Alzheimer’s disease, for example, meant that they essentially had a complete lack of faith.

But if they would strengthen their faith, then God would cure them.

All the while, though, this guy continued to get worse and worse and worse. His Alzheimer’s continued progressing, as Alzheimer’s does.

As the disease progressed, his wife would only ever do the bare minimum to assist him because if she did more than that, it meant that she didn’t have faith, either.

She was trying so very hard to have enough faith for both of them, because they were of an age where certainly she was more concerned about the disposition of their eternal souls versus what was going to happen in this life.

This was a next-level tricky situation, because it involved religion. And the religion was a big part of where the stigma came in.

He was the embodiment of a lack of faith, according to his religion. This couple lost friends they’d had for decades; they lost their social status.

They had been important, and revered. And now they were nothing, nobodies, because their faith community thought it was clear he’d been a hypocrite all that time, that he didn’t really have faith.


Is this kind?

I don’t remember all the particulars, specifically why we were there that day, but I do remember the wife looked me straight in the eyes and told me she had complete certainty that at their religious service the following night, God would allow her husband to get up out of that wheelchair and walk again, because God was going to cure her husband of Alzheimer’s disease.

Now, one of the reasons I’m really good at working with people living with dementia is my natural fight or flight response, which is freeze. If something happens that I don’t see coming, I am the stereotypical deer in the headlights. I don’t get into arguments. I just take a beat.

So that’s how I was able to avoid blurting out anything inappropriate in that moment, when the wife told me she was certain her husband with advanced Alzheimer’s disease was going to walk again because he was going to be cured.

I just don’t think I can put a fine enough point on the damage that’s done when something builds up to a point like that.

I’m guessing it had been years since anyone had said anything to her to contradict her. And I love leaving room for a miracle. I think that’s very important in life. But I also understand what a brain looks like at that stage in the disease process.

I would never want to crush anyone. But is it really kinder to stay silent in a situation like that? I don’t know how many other people out there in the larger community she affected by what she was stating as fact, that her husband would be cured.

Because it wasn’t always in the context of a religious conversation. Was she creating the misconception among folks that didn’t know any better that Alzheimer’s disease is curable?

There was a time I didn’t know much, either

That story, thinking about that story, just telling that story? My stomach is so tight right now because it literally makes me sick to my stomach. I didn’t know what to say to her. I didn’t have the courage on that day to say, “I’m so sorry, that’s just not going to happen.”

Maybe that was her own way of throwing it out there and, and sort of inviting me to contradict her and say, “No, I don’t think that’s going to happen.”

Or to say more plainly, “That is absolutely impossible. That’s not going to happen. And you know what? If a miracle does happen and God strikes me down, I welcome it.”

In retrospect, I can see where there was a way to carefully thread the needle between correcting misinformation and leaving room for faith. But in that moment, I was far less experienced. I still regret that I choked.

I know stigma is so frustrating, especially for those of us who’ve spent a pretty good chunk of time in Dementia World. We think, “Gosh, do people really not know this?”

This is when it’s a really good idea to remind ourselves from time to time that there was a time when we didn’t know very much about it, either.


Let’s Do This!

Let’s be as good-natured as we can about sharing what’s true and what’s not regarding dementia, what’s a good idea and what’s not in managing it.

And let’s point people to accurate information; let’s speak up when they’re doing something like thinking they’re telling a joke. Because if we all do that, we can stamp out stigma so that nobody ever again thinks it’s somehow a mark of disgrace to have a condition attacking your brain, to have a medical diagnosis related to your brain.

Let's make sure we speak up when people have wrong ideas.

And of course, that doesn’t mean that the first 20 of us who encounter Betty or Joe’s sorry, misguided ideas about people living with dementia are going to have any discernible impact whatsoever. It might be the 60th person or the 200th person or the 957th person, I don’t know. But all of us who do say something are laying the groundwork for later on, for that magic moment to happen when Betty and Joe do finally get it.

Let’s make sure we speak up when people have wrong ideas. Let’s call it out when we see stigma and the shame that somehow goes with it. It’s not our shame. It’s the people who are discriminating against our people who own that shame.


You Will Absolutely Make a Difference!

When we end our silence, we take a giant leap forward, toward helping the general public out there understand that people living with dementia are just as valuable and have just as much worth as any other human being on the planet.

People living with dementia have just as much worth and value as they did the day before they showed any symptoms.

We help people who don’t know any better understand that people living with dementia have just as much value and worth as they did the day before they were diagnosed. That they have just as much value and worth right now as they did the day before they showed any symptoms.

So if you’re with me and you want to see this change, too, please:

  • Point people toward good information.
  • Share what you know.
  • Send people to
  • Invite people to your support group.
  • Speak up!

Because if you want to make a difference, I promise you absolutely will make a difference, and you won’t be going it alone. I’ll be right there beside you. We’ll honor Auguste D and Dr Alzheimer and continue the important work they started 113 years ago to stamp out stigma in dementia.

A giant thank you from the bottom of my heart to all The Alzheimer’s Podcast listeners, because I know you’re out there doing everything you can, every single day, to be the best darn care partner you can be. I see you 😉

Until next week, I’m sending you lots and lots of the Good Stuff!


Dementia can last for up to 20 years or more. That's a long time to fly by the seat of your pants, struggling through trial and error! If you're ready to step into the life you and your loved one deserve, schedule your complimentary Dementia Caregiver Strategy call with Christy.


Christy Turner is a speaker and consultant, host of The Alzheimer’s Podcast, founder of, and creator of the online programs Memory Care at Home and The Dementia Sherpa’s Guide to Moving into Memory Care. She’s enjoyed the privilege of working with over 1,500 people living with dementia and their families so far, including multiple experiences in her own family.