(dramatic music) >>Pretty much everybody diagnosed with dementia goes through depression, anger, grief over the things you've lost.

You feel empty.

I was fortunate because I found some support groups.

Through them, I learned that I could live, but I needed a purpose.

>>Black Dementia Minds, it is considered a support group, but it really is like a family.

The group works to educate the Black community about dementia.

>>I probably bought into most stereotypes about dementia just like everybody else, until you face it.

I was like, "This stuff is not true."

>>I know this sounds crazy, but I write these words, I perform this play, and I learn from it, and it repeats back to me.

Yes, Sam, you can live a meaningful life with this disease.

(gentle music) >>Funding for "Dementia and Living Well" was provided by.

>>CareScout, whether you need aging care now or are planning for the future, CareScout is dedicated to helping you navigate your aging journey with confidence.

(gentle music) >>The Alex Kaz Foundation.

And by... (gentle music) (birds chirp) >>I'm Sam Simon.

I want to say I'm the luckiest man in the world, and I'll say it.

(laughs) >>We met in college, and everybody thought it was ridiculous that we got married when I was 20 and he was 21.

But as you can see, it's lasted 57 years.

>>When you're told that you have this diagnosis, you look back and you see it coming.

Getting lost, not knowing where I am, driving on the wrong side of the road.

(gentle music continues) (car humming) >>My name's Laurie Scherrer, and I'm a person living with dementia.

We currently live in Albertville, Alabama.

We moved here three years ago.

We were from Pennsylvania, and we walked in this house and just said, "We're home."

We're just home, so we love it.

When we received the diagnosis, I felt like I had been handed a death sentence, and of course we said to the doctor, "Well, how long?"

Well, no way of knowing.

It could go very fast, or it could be six or eight years, and that was 10 years ago.

(gentle music continues) >>We've tried to make the best of it, of having dementia.

You try to find something to smile at, and it hasn't been a real even road.

I have no fears of talking about dementia for awareness.

We're not looking for a cure, because it's not going to happen in our lifetime.

We know that.

So the best thing we can do is educate people, educate people who are caring for someone who has dementia.

Those are the things we're looking for right now.

(gentle music continues) >>Kim was diagnosed with early onset Alzheimer's at the young age of 50, and she's living well with it.

My name is Robert Reid, and we're both 56.

Actually, Kim is three weeks older than me, so I'm married to an older lady.

We've been married for 34 years, and we're looking for many, many, many, many more.

>>Many, many, many more.

(gentle music continues) >>My name is John J. Sullivan, and right next to me is my wife Patricia, or as I call her, Pat.

So here we are, mainly because of the fact that I have dementia, and I admit it, and I'm glad to talk about it, because dementia is a serious situation, but I've learned how to, most of the time, deal with it.

(gentle music continues) >>The most important thing in a family or in life is to live your values.

>>He is very committed and he is a strong advocate for what he believes is right, and community and family are two of the things that are the most important.

>>Oh, you're all in here.

>>We're all gonna be on news.

>>Yeah, I'm here.

So we are all members of Temple Rodef Shalom.

We're all friends for a long time.

Many of us had, and I had had this tradition in particular of every Friday lunch, the McLean Family Restaurant.

>>Sam is a good man.

He is very giving in both time and treasure.

That's what I know.

So I respect him a lot.

>>He's a troublemaker.

>>Good trouble.

>>Professional troublemaker.

>>Good troublemaker.

>>They asked me whether- >>It's been, you know, almost six years since my first MCI diagnosis.

Major symptoms started in 2016.

I was diagnosed with MCI in 2018, and then the Alzheimer's was in 2021.

And there's nothing volitional about dementia.

"We were there last week, or remember when we went to so and so's house.

Or remember that..." You know, if you use the word, remember, I ain't gonna be there.

And it just doesn't exist.

You know, the good news is that I can be surprised by things over and over again.

You know, "Groundhog Day," and I have no frigging idea how it's gonna unfold.

Right now I'm not afraid of it, and I don't know if that will change.

10 days ago.

(birds chirp) >>Hey, Laurie.

>>Hey.

>>How are you?

You got your baby.

>>We have the baby.

Thank you so much for once again accommodating us.

>>You're very welcome, honey, you ready to go in?

How have you been feeling?

>>Good.

>>Good.

>>Good, same old, same old.

Some challenging days and some wonderful days, so.

>>I understand completely.

>>Count your blessings on the good days, right?

>>Yes.

>>When I was diagnosed, I was 55 at the time, and to me, it seemed like I was at the height of everything.

My career was great, my life was great, we were traveling a lot, and all of a sudden, that was gone.

The finances were gone, some of the friends were gone.

And I was confused.

I didn't understand what was happening to me.

Oh yeah, thank you so much for coming in and always accommodating me.

I mean, coming in on a Sunday.

When you go to other salons, you've got heels walking across the tile, and it's click, click, click, click.

You've got scads of blow dryers and hair dryers and razors and scads of people talking.

And to me, all that is just, it's so overstimulating and it's so noisy, and it starts giving me tremors, and then somebody's trying to cut my hair and I'm already like totally heading towards meltdown.

I cut my own hair for a couple years, didn't do a good job.

Yeah, you remember last time I came in, I had cut it myself, but knowing that I cannot handle all the confusion and noise of a salon, it's like, pick your choices, look half decent or have a meltdown.

>>You can go ahead and put your earplugs in.

Now the first one's gonna be a little loud till I get to the low setting, okay?

>>Okay, thank you.

(hairdryer whooshing) Dementia is a roller coaster.

There's days that I'm doing pretty good and I just feel like, "Wow, it's a great day.

I can do almost anything."

And there's days that I'm so confused and disoriented, I don't know where I am.

Stop for just one minute.

>>Okay.

>>Sorry, I know you don't realize the noise of the blow dryer and even the brush going through your hair would... (Laurie sighs) Okay.

>>You okay?

>>I'm okay.

>>Are you sure?

>>Yep.

>>I can wait.

>>Nope, let's do it, get her done.

>>Okay.

(hairdryer whooshing) (gentle guitar music) >>I had to put more tobacco in.

Oh, now she's watering.

You're doing the stuff I was gonna do.

Woo-wee!

I guess I got some eggs.

Holy moly, you guys really laid.

Well, I was very frustrated with a lot of stuff.

I just kept finding myself in a predicament all the time.

There.

I'll clean that out another time.

Okay.

Twice I had come home and asked Brenda, "What is Alzheimer's?"

I said, "This is happening to me."

Okay, now we get to go in the barn.

(feed rattling) >>Everybody thinks dementia, they think memory.

>>Right.

>>But it's not always memory.

And maybe you were having memory issues at work, like remembering to do this or that, but I didn't see it.

You did everything around here fine.

>>Come on, get outta here.

>>I mean, you've been eight years now.

>>Yeah.

>>And memory has just been starting to become more of an issue.

>>Right.

(chickens clucking) >>So here we got three generations.

There's me and Pa, right?

>>Mm-hmm.

>>And then Tracey and Brian.

And then their two boys.

>>My two boys.

>>That are men.

And then Kinsley.

>>Now, Kinsley funny.

>>Funny now we live together.

>>Mm-hmm.

>>And we like it?

>>Yeah, well, we're best friends, let's just say that.

>>Yeah.

>>Dad's always had anger.

So, you know, I say with dementia, those things then come out more strong, and they do.

If I hear that it's getting out of control and she's upset, I'll open the doors and go through, and I'll just say, "Enough, we're done."

You know, and he stops and I'm like, I don't understand.

How can he control it when I enter the door and not control it when I'm not there?

And that's why I'm here, is because, you know, >>I can't set the limits.

>>Yeah.

(birds chirp) >>Come on, Soph, come on, Sophie.

(whistles) No, come on this way.

I cannot say enough thank yous to God.

Good girl.

For letting me have Brenda, because it hasn't been a pretty picture at times.

And I've seen her face when she was really scared, when I got angry.

So, and I hate that.

I hate it terribly, I never wanted to be like that.

But that's just what's my make up right now with this disease.

And so, you know, you can say sorry, but that's not enough.

All right.

Time for lunch.

I thought anger was, this is something simple.

I should be able to do it.

Or this is something that you and I can talk about, but the mind doesn't let you do it that way.

It won't.

And that's a problem with people with dementia.

You can get offended, just snap of a finger.

There we go.

(gentle music) >>I remember the day and the hour, June 15th, 2017, at seven o'clock in the evening, we received the official phone call that she was being officially diagnosed with early-onset Alzheimer's.

Come on, let's go.

We're about six years in now.

And it's only really been the last two or three years that she has had dramatic changes.

Not being able to do things physically the way that she could, to do things or to speak verbally the way that she spoke, even to focus on things the way that she used to.

Come on, step out.

(birds chirp) You left me.

(laughs) You don't wanna stay with me?

Now, watch your head.

Getting out of the house provides the opportunity of getting out of those four walls of the familiar house.

It allows the opportunity for both of us, not just Kim, but both of us, but mainly for Kim to have that social aspect, whether we encounter anyone or not.

>>Go outside and play.

>>Go outside and play, that's right, Kim.

Good job.

(Kim speaks indistinctly) One of the effects of dementia Alzheimer's is that people tend to forget those that are close to them.

But even if she can't remember my name, even if she thinks that I'm someone else, because of that familiarity that we have, she is comfortable with me at all times.

So there's been times when she has literally been looking for Bobby and I'm sitting right there in front of her.

So relationship wise, it's been tough.

It's been tough, but at the same time, it's been good.

(birds chirp) (gentle music) >>In 2019, we got the official diagnosis at UC Davis Alzheimer's Center.

And it was for dementia, likely Alzheimer's and possible Lewy body tendencies.

It's a partnership.

>>Yeah, yeah.

>>And it's a joy.

It's hard as hell, as you see.

I probably have six jobs at once.

One is earning money still, because this is an expensive disease.

They don't talk about enough.

And it's a joy.

Every day, I feel so lucky to be with you.

>>Pat, besides being physically beautiful is beautiful in spirit.

I don't know that's a good description of her, but she is wonderful help to me.

I hope she always does appreciate how I feel about her.

>>I have to live with a broken heart.

>>Hmm.

>>Constantly.

We've lost a lot.

You've lost a lot of your memories, your abilities, and I'm watching it every, there's not gonna be a good outcome for this.

Not gonna be, and yet there's gonna be a rich and meaningful outcome because it is every day.

>>Hmm.

>>I have never had more fun in life.

I have never felt more present, more able to do things.

We've never had more connection to family.

Never had deeper faith.

I live in faith, I live with heartbreak, I live with joy.

I live with pain.

(birds chirp) >>So this is how it ends.

(gentle music) I'm not gonna die, at least not right away.

I'm just going to go away, transform, become someone else.

It's been quite a journey, really.

Who would've imagined when I was confronted with mild cognitive impairment even, which was about almost two years before they did learn that it was Alzheimer's.

I'd been in the theater world for a while and doing a play and about my wife's breast cancer.

And I had a lot of colleagues.

And as I started telling them and I started experiencing some issues, they encouraged me to write about it.

Then you get the Alzheimer's diagnosis and you know, I'm like every, I'm human and you know, there's a bit of depression, there's a bit of anxiety, and then a motivating force.

I read a book which argued that the answer to the question, "Is life with this disease worth living?"

The answer was no.

And so for a moment I had to think, should I kill myself?

And that translated to inner anger that I would even think that made me angry and that gave me energy to take the encouragement to write and to begin to try to write about it.

It's called early stage, early stage Alzheimer's.

That's what I've got.

There is no doubt and there is no cure.

So I had to get the confidence that I could do it.

I didn't know that I could, I know this sounds crazy, but I write these words, I perform this play, and I learn from it.

And it repeats back to me, "Yes, Sam, you can live a meaningful life with this disease."

And I need that encouragement.

(gentle music) >>Many times when people are diagnosed with dementia, pretty much everybody goes through depression, anger, grief over the things you've lost in a number of different emotions.

You feel empty.

I was fortunate because I found some groups that were support groups.

The first group I found was Dementia Mentors.

Through them, I learned that I could live, but I needed a purpose.

So that's where I started getting involved in a lot of advocacy.

To me, the support groups are not just socializing.

They're helping each other to find a purpose.

Best way to find purpose is to find a way to help somebody else.

I wanna welcome everybody to Dementia Discussions, and I so much appreciate y'all coming on today.

Our topic today is when friends and family just don't get it.

How many times have we had friends and family that just don't understand?

Yeah, okay, I see a lot of heads nodding.

It's hard.

For me, I think one of the difficult parts was losing some of our long-term friends that we used to go diving with, and then they just kind of didn't get it.

What about you guys?

How's it feel when your friends and family don't understand?

>>It's frustrating.

You know, most of the time when I experience that, it's trying to explain something I'm feeling, a symptom I'm feeling, and they think they're being comforting by saying, "Oh, that happens to me all the time."

>>Oh.

>>And it's not comforting.

It's the exact opposite of comforting.

>>We build such a tight comradery and bond with our other people living with dementia because we understand each other.

We always say, "You've met one person living with dementia.

You've met one person living with dementia."

No two of us have the exact same symptoms.

No, two of us are the same.

>>And at this point I'm kind of glad- >>But you get a group of six, eight, 10 of us together, there's usually somebody else in the group that has experienced the same thing.

I woke up today, so agitated.

I wanna scream, I wanna punch a wall.

We can get on and talk to each other.

And we understand, there's no judgment.

I mean, I can talk to my husband Roy, and he kind of understands, but he doesn't totally understand.

And somebody who's not living with me, they definitely don't get it.

Why is she in such a bad mood today?

No, it's not a bad mood.

If you have a new symptom or something happening, who do you go to?

Who would be the first people you go to to ask about it?

April, what do you think, who would you go to first?

>>Well, I'm laughing so hard because the answer's supposed to be, I'd go to my medical professional.

I would never, I would come to you guys first.

>>A doctor can't answer the questions of what it's like to really live with dementia.

They don't know, they guess at it, but they don't know.

Other people living with dementia are more help in dealing with your symptoms than anything else.

We're gonna move on to music beat and trivia.

So I hope you're all ready to wiggle your toes, raise your hands and do a little clapping.

All right, what about "Surfin' U.S.A.?"

How's that sound to y'all?

All right, let's get it moving.

(upbeat music) ♪ If everybody had an ocean ♪ Across the U.S.A. ♪ Then everybody'd >>Come on.

(humming) Come on, Sophie.

(birds chirp) >>Well, you guys get in and go.

>>All right.

>>Okay, I love ya.

>>There we go.

>>There you go, don't spend it all in one place.

>>Yeah.

(engine humming) >>So what do people hear when they get a dementia diagnosis?

They hear, sadly, "Go home and get your affairs in order."

But we all go to the end stage thinking, we all automatically jump from, today I am diagnosed, and tomorrow I'm staring off into space, and drooling.

And nobody talks about the good quality of life in between.

>>I normally go get the feed for the chickens and I get their straw and whatever.

I have little odds and ends of errands and like today, taking the UPS boxes back to be returned for Brenda.

(birds chirp) Oh, I forgot something.

My packages.

I got dementia, you know?

(Mark humming) (birds chirp) There we go, now I'm on the right path.

Except for somebody's not heeling right.

(laughs) Yeah, thank you, do you wanna go up front?

>>Yep, we're gonna go up front.

>>Okay.

Come on.

I've made very good friends with quite a few places where I go get my gas and then the hardware and they know I have it.

So you don't have to say anything.

And they're right up ready to help me.

So there's no embarrassment of anything or make you feel a little bit smaller.

They never make me feel like that at all.

>>Have a good day.

>>You bet, thank you very much.

>>How you doing, Mark?

>>Good, how are you doing?

>>I'm fine, thanks.

Nice to see you.

>>Yeah, same here.

>>Have a great day.

>>You bet.

(birds chirp) Hup, attagirl.

Good girl.

Sophie has a GPS and wherever I take her, why, of course, they can track me down.

>>I've plugged it in.

So if he gets to church, it says, "Sophie's at church."

If he's at McDonald's, it says, "Sophie's at McDonald's."

If it's at the doctor's office it's, "Sophie's at the doctor's office."

And so if I'm working, I know he made his doctor's appointment, or I know he went to McDonald's or went to church.

>>Right.

>>There's no place you can go that I can't find you.

No going to your girlfriend's house.

>>Right.

>>Right?

>>No secret missions.

(Alexa chimes) >>I'm reminding you.

Sophie, go get it, go get it.

Go get it, Sophie, Sophie, go get it.

(gentle music) >>There's not too many places that do dementia service dogs anywhere in the world, let alone in this country.

And Mark has spent years working with the trainer.

>>Well, actually four years now.

>>And she is like having a kid for us.

>>Yep.

>>When Kim was diagnosed with early-onset Alzheimer's, we knew nothing about Alzheimer's.

Nothing at all.

And one of the first things we did in our quest for understanding was we made a decision that we would advocate for dementia.

Anybody got anything going on in their lives?

Anything exciting going on?

Black Dementia Minds, it is considered a support group, but it really is like a family.

The group works to literally find the best ways to advocate for the Black community so that we can find ways to educate about dementia.

>>I did.

(laughs) >>Caring for someone with dementia, or living with dementia as an individual is challenging.

And I don't want to take that away, but when you add on or layer with the color of your skin, so identifying as Black or African American brings unique experiences.

Seeing these alarming statistics of how dementia disproportionately impacts communities of color.

Seeing that African Americans were twice more likely than our white counterparts to have a diagnosis of Alzheimer's disease or a form of dementia.

>>Well, one of the beauties of Black Dementia Minds is it encompasses individuals with different types of dementia, different ages, different backgrounds, different experiences.

We have members who may not actually have a care partner, so they find ways to get support in their every day.

Whether that means having good neighbors around them, whether it means getting involved in certain activities.

There are so many ways that one individual can do something.

>>Black Dementia Minds, my wife will tell you that I will be there every Wednesday without a doubt.

So we can just talk, and you know, just relate to each other and just help each other and it's a great feeling to have somebody there that understands you because they're going through the same thing that you're going through.

>>This is just part of life.

How you just seem to have, when you have something in common with someone you connect, that is just natural.

So for him it's working.

It's really working because iron sharpens iron.

>>That's all right.

In the initial stage is when we first joined, Kim was able to interact more than what she interacts today.

But at the same time, even though she has progressed and she's not able to interact as much, she still is always listening.

So even though she may not say much, she's always listening.

So every now and then you will hear a laugh or a giggle and then she'll smile.

Personally, for me, dealing with Kim on a daily basis, I'm totally learning something new every day.

And as soon as I get something down, guess what?

She changes a little bit, so I have to adapt to that.

>>This group is just amazing, it's family.

They showed me that you can live fully with dementia, 'cause if we just read all the literature and we watch some of the early movies about Alzheimer's disease, you would think, oh no, this is so dreadful.

But being part of Black Dementia Minds, it shows me, you know what?

You can live fully with this.

>>Hi, how are you?

>>Fabulous, over fed.

>>Oh, that's always a good thing.

Hi, John, how are you today?

>>Pretty good.

Yeah, we had a great day so far.

>>That's awesome.

>>Gonna be even more.

>>Yeah, it's gonna get even better.

>>More fun now.

>>That's awesome, are you excited to do some drawing?

>>Yeah, I'm ready.

>>Sing some jazz?

>>Yeah.

>>Awesome.

>>Yeah.

>>What are you feeling like doing today?

>>Oh, whatever you have there for me to work on.

>>Would you prefer drawing people again or do you wanna do some line work and just kind of see where your hand takes you?

>>Well, let's try people.

>>All right, good idea.

(gentle music) So I come on Mondays and we do some drawing.

We started off with like coloring books, so it was already stenciled out and everything.

Pat told me he used to really be into art when he was younger.

And he has these phenomenal drawings of just like people and stick figures.

Very intricate, but yeah, we just hang out on Mondays.

We listen to some jazz.

>>Mondays?

>>Yes, sir.

>>Today is Monday?

>>Yes.

>>Oh.

>>I know, it felt like a Tuesday when I woke up.

I was a little confused.

But yeah, we do some drawing.

(John speaks indistinctly) Really the only rule is that there are no rules.

It's just creativity, whatever he's feeling like doing that day.

The past few weeks we've been into more like getting him back into drawing people and stick figures and just kinda letting the creativity flow.

But yeah, there's no rules.

We just kind of go with whatever he's feeling like doing and yeah, we have a good time.

(gentle jazz music) How's that color working out for ya?

>>This color, well, it's different.

A little different from the red.

>>Yeah, it's definitely a little lighter, but it gives a good contrast, you know?

This one also might work if you'd like.

>>What is this.

(indistinct) >>That's a black.

>>Yeah, that's- >>Do you have a color you're looking for?

>>I want a black for the shoes.

>>Ah, nice, give 'em some sneakers.

>>Mm-hmm.

I can choose colors that I wanna work with and I can make the own, my own kind of thing.

Sometimes it looks like a person, sometimes it doesn't.

Sometimes it looks like an animal.

Sometimes I don't know what I'm coming up with.

(gentle jazz music continues) >>You're doing a good job with the pencil work today.

>>It's a good thing that I can erase things.

>>That's true.

No need for it to be perfect though.

It's looking good so far, it's coming together.

>>Usually it's fun just to draw things and then to hear her reactions, which have been very positive to what I've been doing.

And I sometimes I think, "Oh, this doesn't look so great."

And then she'll say, "Oh, that looks good."

(laughs) (footsteps patter) >>We need a new word.

Dementia is a degrading, demeaning word.

I'm not crazy, I'm not mad, I'm not insane.

I'm just profoundly forgetful and I can get disoriented and I'm at earlier stages.

I don't know where exactly.

And I do sense things are getting worse.

I still go to dark places, but I'm pulled back and pulled back by what?

By people, by responses to what I'm doing.

I want to make a difference.

So I'm in a drug trial and I go in these studies.

Well, maybe something about me will help find a cure for others in the future.

Why not devote my life to something like that?

Okay.

Okay.

(gentle music) I love that I have something to offer and that my life can be of meaning to others.

And I think we get put here for reasons.

And maybe this is one of the reasons I'm here to be of value to some other person.

>>Hi.

>>Hello.

>>Hi, How are you?

>>Good.

>>Thank you for coming today.

>>Thank you.

>>Thank you for coming.

Thank you all for coming.

>>I view it as a positive anticipation.

I'm looking forward to walking on stage and it can be one or a hundred people, it doesn't matter.

It's being that character on stage and creating this story again, this journey, 'cause it's a meaningful journey.

Even when I do it again, I re-experiencing it.

If I can re-experience it, then communicate, spoke to the audience, and to me, and that's my goal.

(gentle music continues) >>Come on, let's go.

Let's go, get on vacation.

Come on, hurry up, hurry up, let's get on vacation.

I love to travel, but now I'm not as confident traveling.

And so we have a lot of strategies in place for that.

With this motor home, because it's laid out similar to my home.

It makes it so much easier to travel.

I would stay in this rather than a hotel any day in my life because I can come in here, I feel safe, I feel comfortable, I know where things are.

And it's just a very secure feeling.

And the dog loves it, and we love it.

And it's just like, it's second home to us.

(gentle music) >>We're in Guntersville, Alabama, and this is Lake Guntersville.

And if you look out a little further on the other side of these islands, that's the main channel, 'cause this is also the Tennessee River.

>>Down here is where we go camping all the time.

That's where we take our motor home is down there.

We usually try and get a spot right by the lake down there.

It's peaceful.

And for me, I really need someplace to go that I can, that's just quiet.

We have to put in some safety precautions.

For example, although I love going out on the pontoon, I can't handle the noise of a high powered boat.

That's too much for me.

But on the pontoon, I can put my earplugs in and I can handle that.

We have lights around our motor home that we lay down so that if I go outside without Roy, that I can find my way back to our motor home.

And generally he doesn't let me go out by myself just because it would be too easy for me to go for a hike and then get confused.

Because you have to realize confusion is a part of dementia.

No matter how well you're doing, you can suddenly turn on a dime and suddenly you're totally off.

So we do put in a lot of safety precautions.

Kayaking, we've always enjoyed kayaking, but we had to buy a tandem.

So we have a kayak built for both of us.

Just 'cause you have dementia doesn't mean that physically, your body's dead.

You need your body to stay active because it increases your endorphins in your brain.

It's healthy for your body.

It's very healthy for your brain.

We don't believe in giving up.

We don't, we really think that we need to try and do things differently, make changes, adapt.

And the day may come that I can't do all these things anymore, and we realize that.

But for now, we just need to really do them different.

But we still do them and we, and we fight to still do them.

(keyboard clicking) >>So after Mark was diagnosed, we went in the black hole, like lots of people go in the black hole and you're very sad and you're very, you know, just coming to terms with something new.

And I was on Facebook and I'm looking and all these groups and it seemed like, "Wow, is nobody happy living with dementia?"

I'm like, "Wow."

And what I was surprised to find is that it was the people living with dementia who were really trying to live well.

When I go into a care partner support group, I never heard them say, "We're gonna live our best life.

We're gonna try to live our best lives possible."

I just didn't hear them say that.

But then when I went into the groups with people living with dementia, "We're gonna make the best of it.

We're gonna live our best life."

And so I'm like, "I wanna be with those people."

So National Council of Dementia Minds started with me and another friend and eight people living with dementia.

So we said we have to develop advocates.

And so that's part of what we do.

We develop advocates through a peer mentoring, education, freaking awesome system.

It's a Zoom community, friendship.

We go out, we create videos, we do education.

I have 40 years of work experience.

I have a master's degree, okay.

That education paled in comparison, when I started listening to people living with dementia, listening to the lived experience, everything totally changed in my mindset.

Totally changed in my mindset.

I probably bought into most stereotypes about dementia just like everybody else.

Until you have, you know, face it, face on.

I was like, "This stuff is not true, this stuff is not true."

>>Hi, Jen.

Hello.

>>Hi.

>>Hello, good morning.

>>Mark, you wanna introduce yourself to Mel?

I think you guys may have met before >>We have.

>>Just briefly, Mark.

(Mark laughs) >>I am Mark Roberts.

I'm Brenda's worse half.

(people laugh) And I've had vascular dementia for eight years, yeah.

So I love being an advocate even though it's getting a little bit harder.

But I love introducing to people or people being introduced to me and to talk to them and find out how they're handling their dementia and just have an opportunity that there is someone else there.

And I can put my hand on there, the shoulder, and feel that I'm part of them too.

I'm getting lots and lots of education by Zooming in with other people and listening to their stories and then able to talk about my story.

I've come up with a lot of problem solving and trying to live every day with dementia.

You still have a mind and you can still use it, but use it in the way that's gonna improve your life.

>>Mark loves meeting the new people who are diagnosed.

He loves that part of it.

And that's what National Council of Dementia Minds does for him, has restored his meaning and purpose because he gets to help others.

But then when I say, "Hey guys, I've had a request to do a training for mental health providers.

What do you think mental health providers need to know about living with dementia?"

And then they tell me what they think mental health providers need to know.

And then we create the presentation together.

And then when they do the presentation, people come back afterwards and say, "Oh my goodness, I have this whole new understanding.

I'm gonna treat people differently in my care."

And what do I see of a husband and other people?

They sit up a little straighter, they sit a little taller and they say, "Thank you."

They have meaning and purpose.

Mark now provides acts of service for other people.

Right, isn't that what it's all about?

It's not a sense of purpose, it is purpose.

(gentle music) >>Who is this right here?

Who is that right there?

You waving at her?

Little girl back then, who is that?

(Kim laughs) Who is that, is that you?

>>Yeah.

>>Who is that standing next to you, your?

>>My sister.

>>Your sister, what's her name?

>>I am.

>>What do you call her?

>>Carissa >>Carissa.

Who is that young man right there?

You don't remember this guy?

Do me a favor and look at me.

Believe it or not, I'm that same person, that's me.

>>That's you.

>>Now I know you know who this is.

Big part of our day is filling time, to be honest with you.

So because of that, we try to do different activities.

And this is a fun activity because it does allow her the opportunities to reflect.

And maybe if her memory does come back of something funny that happened, it'll make her laugh.

But if anything, it also helps her to even remember the names of the family members that's close to her to try to bring back some of those memories.

Especially with the short term memory.

A lot of times she can remember things that maybe are a little bit further back.

So with that, try to spark those memories.

Even though some days she can't say the names, sometimes you can see it on the tip of her lips and it wants to come out.

So that gives me an indication that she remembers who it is.

She just may not be able to verbalize it.

You kissing somebody else?

Huh?

(gentle music) At my wedding, you going to be kissing somebody else?

What's wrong with you?

I'm just playing.

(both laughing) I'm just playing with you.

>>Don't check it.

(laughs) >>Just him taking on this role of a full-time caregiver that shows how much he cares for my mom, how much he will do for my mom.

>>Whenever you say Bobby or Robert, she just lights up, you can always tell that day that they're still in love with each other no matter what.

>>Yeah, yeah, that's all right.

(traffic rumbling) >>From the beginning, I knew I was gonna support John fully.

My advocacy is wanting to strip away a lot of the ignorance.

Boy, does this bring back memories.

I'm in the center of a revolution in caregiving, care partnering, and how dementia's thought about and taught now.

I'm a writer, I'm a speaker, John's care partner.

Care partner for him, always curious person.

I'm a research junkie, and I'm very lucky that I have a wonderful piece of work with the Library of Virginia on dementia-friendly libraries.

And I hadn't really heard that much about dementia-friendly libraries.

And we just started brainstorming what could happen and really make Virginia one of the top dementia-friendly libraries.

>>Being a library, we're a reflection of the community.

And that includes people living with dementia.

There's a compassion, there's a sensitivity, there's an awareness level that we all continue to strive to attain so that when people with dementia come into the library, they feel welcome.

They feel seen.

That's the beauty in the magic of the libraries.

We have puppets and more picture books back here.

>>John, this one caught my eye and it sort of looks like calling, saying, "Read me, read me, read me."

>>Yeah.

>>See the back.

>>I love the pictures.

>>Oh yeah, yeah.

>>You could make up your own story from the pictures, I bet.

>>Most of the time, oh, look at this crowd here, in some way that the artist doing this is, is giving these different creatures a different, different imaginations.

They're different things that they're thinking about, you know, it's like, it's not just a beautiful picture of an animal done in a specific way, but in a way that that brings out, almost brings out thoughts.

You can think, "Well that, oh, that's what he's thinking about.

Oh, that's what she's saying," you know, that kind of stuff.

>>Yeah.

>>Yeah.

There's more to my life than, than I thought there would be when I was first diagnosed with dementia, because I had Pat, and I had the ability to learn a lot of things over the years and I could learn how to deal with this disease.

So that's what I'm doing now.

I know dementia is a serious thing, but I can live with it.

I want to live a full life and stay connected to the things that I really love.

And I can do that in a way, in spite of dementia.

Or even though I have dementia, I can still live what seems to me to be a full life.

(elevator dings) (gentle music) >>So this is how it ends.

I'm not gonna die, at least not right away.

I'm just going to go away.

Transform.

Become someone else.

As you get a terminal diagnosis, it's not beatable.

We evolved into the response.

I want to be the outlier.

There's this bell curve.

Everybody here dies really early.

Everybody here average about the same time, and everybody, and there's some one person out here who may never, I wanna be that person.

So you shoot for that.

So you eventually became a self-taught bookkeeper and worked at a small business in town.

So it's a journey, I don't pick it, I can't change it, but I can live it and I will try to live it in the best I can.

The best I can.

Even Nelson Rockefeller thought that.

>>He has a purpose and I think that's very important.

What can I do that's positive?

>>And the purpose is not to die.

>>Right.

>>The purpose is to live a meaningful life.

>>Right.

>>With the disease.

How do you live a meaningful life with what you're given?

And that ultimately becomes our choice.

As usual, from the beginning, Susan's been right.

Let's just take Switzerland off the table, and just see how many more troublemaking years I have left in me.

Thank you.

(audience applauds) (sentimental music) (audience applauds) (sentimental music continues) (sentimental music continues) >>Funding for "Dementia and Living Well" was provided by.

>>CareScout, whether you need aging care now or are planning for the future, CareScout is dedicated to helping you navigate your aging journey with confidence.

(gentle music) >>The Alex Kaz Foundation.

And by... (gentle music)