Too Soon to Forget: The Journey of Younger Onset Alzheimer's Disease

(soft music playing) Woman: I feel robbed that at such a young age, I've gotten this diagnosis.

And it's, uh-- it's difficult for me to explain to a lot of people, because they can't see it in me.

But there are days when I just, um...

I just don't know what to do with myself.

(birds chirping) Man: I began to see little chinks in my armor.

And I knew that-- that something seemed out of balance.

I couldn't figure it out.

It was-- it was a, um... a mystery to me.

Man #2: I think the biggest challenge I had was thinking about how I'm going to become worse as time goes on, and if I would even notice that.

Woman: I want to be strong for my children.

I want them to know that I can still love people and do things, and-- and, you know, still live with Alzheimer's.

Narrator: Being diagnosed by the age of 65 is called younger-onset Alzheimer's disease.

And while there's no question coping with Alzheimer's at any age is a daunting task, when someone is so young, there are many unique and unexpected challenges that lie ahead.

I know this to be true because the woman I so dearly love, and my closest friend, has younger-onset Alzheimer's.

Hello, I'm Dan Gasby, and this is my lovely wife B. Smith.

We were told that B. had Alzheimer's a few years ago, just before her 64th birthday.

And the day we heard those words, our lives changed forever.

You see, with younger-onset Alzheimer's, a person is in the prime of life and they might be at the height of their career, just like B. was.

Spouses might be trying to work, and now have the added responsibilities of care-giving.

Perhaps there are children still at home, or young adults setting out to begin their lives.

Inevitably, there are changes in relationships, there's stress and, of course, financial concerns.

Then there's the perception-- how do you explain that someone so young could have what most consider to be an "old person's disease"?

During this program, you'll meet courageous families as they share their emotional journey of living with younger-onset Alzheimer's-- the loneliness, the adjustments and the healing power of community.

No one should have to face this disease alone, and those of us living with younger-onset Alzheimer's know that sharing our story is the first step.

Man: I guess one of the biggest questions I had to myself, thinking back is, Why Sylvia, at such a young age... this could happen to her?

She's young, and she's, you know, just really started, you know, living her life.

She had-- we had so many dreams and so many plans for the future, you know, and all that was just kind of taken away.

Woman: Prior to this diagnosis, I had never known that there was such a thing as early-onset Alzheimer's.

I had a grandfather who had Alzheimer's, but he was in his 80s.

And this took some getting used to for me, that this was a whole different kind of a thing.

And I was kind of pissed.

I mean, I was pissed at God too.

And, um, still am, some days.

Lora: To have Pam's diagnosis come at such a young age certainly wasn't in our plans.

You know, we have two young kids.

They're in sixth grade and they're dealing with this, and they're wondering what that means for the future.

It's a hard pill to swallow to think that, you know, when we looked out on our life, how that's going to change.

Dan: Alzheimer's was first discovered in 1906.

In these past 100 plus years, scientists around the world have made progress in better understanding the complexities of this disease, but have yet to discover a cure.

Dr. David Bennett is the director of the Rush Alzheimer's Disease Center in Chicago.

Dr. Bennett is recognized as one of the most respected leaders in the world in Alzheimer's research.

He describes the disease in a way we all can understand.

Dr. Bennett: Alzheimer's Disease is characterized by progressive loss of memory, in particular, something called episodic memory-- the memory of the episodes of your life, the autobiography of your life-- the things that you did, the places you went, the people you saw, the people you loved.

And this progressively is lost.

And then eventually, people lose other cognitive abilities such as language.

And they lose the ability to plan and to think.

And this is something that can progress over a few years.

It can progress over many years.

Dan: Another renowned researcher, Dr. Randall Bateman of the Washington University School of Medicine in St. Louis, focuses much of his research on younger-onset Alzheimer's.

He talks about the loneliness that comes with this disease.

Because it's so rare to have a younger or early-onset form of the disease, there can be a feeling of isolation, of loneliness within these patients and families.

And without someone who can understand, who has experienced something similar, who can discuss this with, those feelings of isolation can lead to desperation and more problems.

And so community is critically important for these individuals.

Dan: People with younger-onset Alzheimer's often experience a feeling of isolation.

Because of that, more than a decade ago, the Rush Alzheimer's Disease Center in Chicago developed Without Warning, one of the few, and perhaps largest, support programs in the country, specifically designed to help those with younger-onset.

The Without Warning program has created a collection of paintings that depict the emotional journey of younger-onset.

"Social Circles" speaks to the changes families feel as they begin to care for their loved ones.

One more.

Three.

Ready?

Three?

Come on.

I have your hand.

Come on.

Three... Come on, I have you.

Peter and Sylvia met their freshman year in high school and have been married for more than 30 years.

They have two grown sons who have chosen to stay at home to help take care of their mother.

Peter works as a train conductor, often leaving home at 3:00 in the morning and returning after dinner.

It's a tough life.

Sylvia was only 46 when she and Peter received her diagnosis.

Peter: I could sense and I could see the fear in Sylvia.

She was very emotional.

She was always crying, sad, but... You know, it just was very hard for her to accept.

I remember when we got home, sitting down and talking with the boys.

And it was hard, you know, telling the boys that their mother was... going to change, and she wouldn't be getting any better.

Good job, good job.

We're going to walk around.

I know it hurts.

I'm sorry, okay?

Man: My mother being diagnosed at such an early age, I mean, it just really came out of nowhere.

I mean, we were just kind of blindsided.

We saw her changing slowly, but to hear the news that she's never going to be the same person again, of course, I felt angry, I felt sadness.

And just knowing that I would never get my mom back, I didn't want to believe it.

I just didn't know much about it.

Like, I just didn't really want to believe it.

And I thought maybe they would do more tests and find out that maybe they were wrong.

It had to be something else.

When you're growing up when we did, as a gay individual, you spend an inordinate amount of time in the closet.

And its kind of a quiet, shameful place to be.

And then when you come out, there's an empowering thing that happens.

Alzheimer's, and early-onset Alzheimer's, has kind of the same thing.

Because nobody wants to talk about it.

You know, it's a shameful, quiet thing still.

And so one of the things that we said to each other, when we talked about it, was, "We're not going to do this again.

"We're not going to go back into a closet.

"It took a long time to get out of the closet, we're not going to go back in!"

And so we wanted to help put a face and a name and make it so it's not a shameful place to be.

(music playing) Dan: When is the right time to share the news that it's Alzheimer's?

That may vary.

But as difficult as it may be to tell others, keeping it a secret only adds to the isolation.

Woman: Sharing the fact that my-- my husband Scott has early-onset Alzheimer's is probably one of the most challenging things I've had to do.

Even with the family, it's been hard.

We're comfortable with people that understand and have it, and they're lifesavers.

It's instant acceptance.

And I hope that maybe through education, we can help others in the community that can provide acceptance, rather than judgment.

Dan: I remember from getting that diagnosis, when we left the hospital, we walked eight or nine blocks, and she looked at me and she said, "We're going to tell people."

Because the one thing we understood from being in front of the camera and the public eye is that people make things up.

And people connect dots that are not there.

And the only way to have any sense of your own serenity and confidence in what's going on is for you to tell people exactly what you're dealing with, so you, ultimately, define yourself.

(soft music playing) Dan: It takes courage to tell your family, friends and others.

But how do you share this news with young children?

We wanted to be honest with them.

We didn't want to hide anything from them.

And so we sat down in the kitchen and we told them that, you know, what's been going on.

"We know you've been wondering what's been going on.

And Mommy has Alzheimer's."

And Max, our son, burst into tears.

'Cause they had just learned about Alzheimer's in school.

And, um, Ella was a little bit more confused, but Max was beside himself.

I mean, he just cried and cried and cried.

They told me that-- like, I was really sad at first, but like, you know, it's getting easier to deal with it.

They explained to me that it didn't, like, happen so fast, usually.

Ella: I've learned from my moms and this disease that, um, even if the bad things happen, their love is never going to change for us.

And their love is going to keep on going, no matter if they yell at you or get mad at you, or just get plain disappointed in you, they're not going to stop loving you.

Unlike people in the their 70s and 80s, many with younger-onset may be in the prime of their careers when symptoms begin to surface.

And having to stop work when you are not expecting to-- it can be hard, both emotionally and financially.

B. and I have been married for over 25 years and have been blessed with a wonderful family and rewarding careers.

Before B. was diagnosed, she lived the life of a true entrepreneur.

She was a supermodel, one of the first African-American women to appear on the covers of Mademoiselle, and five covers of Essence magazine.

She owned and operated three restaurants, for almost three decades.

B. was a successful magazine publisher, a television personality, a recognized lifestyle maven, and an acclaimed celebrity chef.

My beautiful and intelligent wife was unquestionably a force to be reckoned with.

But now, all that has changed for her and for us.

Life changes for everyone when Alzheimer's becomes a part of it.

Man: My wife started having problems approximately 10 years ago.

There was little things, but I always attributed those things to her being so busy because she was so successful.

She would make appointments and forget about them.

She would-- I would hear her on the phone with a client and she'd say, "Well, I'll met you tomorrow at noon."

And, you know, tomorrow at noon, she's still sitting here.

And I'd say, "Tina, didn't you have an appointment at noon?"

And she'd jump up and run out, you know, and make that appointment.

She did a very good job of-- I don't want to say hiding, but, keeping the fact from me that she was experiencing some problems.

Dan: If anyone was ever an uber person, it's my wife.

I mean multi-tasking was no big deal for her, or for myself.

And then suddenly when you go from being able to do and juggle many things to having trouble doing a thing that you take for granted, you start to say, "Well, what's going on?"

You constantly go, "What was that?"

in your mind, even if you don't articulate it, and then when you look back later, you see that that was the beginnings of the journey that you didn't know you were going to be on.

That was me as a flower girl.

Dan: Annette started to show symptoms of memory loss in her early 40s, and was diagnosed with younger-onset when she was 47.

Alzheimer's has a history in her family.

Her father was diagnosed at 44, and has since passed.

For Annette and many others, realizing that it's time to stop driving is another tough adjustment that comes with having Alzheimer's.

And it's a decision that can affect the entire family.

When I was in middle school and she first got diagnosed-- I think I was in eighth grade.

She would drive me to school and her driving got so bad, people would, like, get really angry at her.

And I was so confused, but she-- her driving was getting really bad, and she was, like-- didn't notice it, I guess.

She just got worse.

Woman: I remember taking her for a driving test the first time, and she passed it.

She was happy, I was happy.

The second time she went for her driving test, she did not pass, and she sat in my car that day and she literally cried for 20 minutes.

Broke my heart.

Woman: Well, Alzheimer's disease changes your life immensely.

It's just, let me count the ways.

The most difficult thing for me is the-- the loneliness of our relationship as husband and wife being gone.

And I don't mean that-- I'm not talking about intimacy, necessarily.

I'm talking about the day-to-day conversations.

Mike: I really didn't notice it that much.

But... just a lot of what you're seeing right now, where I'm trying to get something out of my head that probably isn't there.

You know?

And just a fog that I wasn't comfortable with.

Dan: Many with younger-onset Alzheimer's talk about losing power, feeling isolated.

"The Pit," another painting from the support group, was created because a man with younger-onset said he felt like he had fallen into a deep hole.

From below, he could see everyone, but couldn't figure out how to reach them.

There are times when I feel like I'm secondary in this family.

And Lora has all of the-- does all the decision-making and-- and, um... scheduling, and... And there are a lot of times where I'm fully capable of it, but I defer to her, and I-- to be honest, I resent that sometimes.

It's really hard for me to take a back seat.

And that's where I feel like I'm supposed to be, is in the back seat.

So there's times where I feel like, okay, I want to include her, and I want to have her as part of this, but it's causing stress to have her as part of that decision.

Because there's things that have to get done.

And I'll start pushing because we have to get her decision, and then it's just causing stress.

So a lot of times, I'm trying to pull away that stress that she's feeling by just taking care of it, just getting it done.

I-- I don't know, this disease makes me feel like there's a black cloud right over here, and at any moment, it can turn to thunder and lightning.

And it'll just-- I'll just crumble.

Dan: Alzheimer's changes relationships and responsibilities, in both subtle and not so subtle ways.

Nancy: The bigger changes, I think, for me, have been that he's more withdrawn.

He's frustrated, understandably, and sometimes he gets angry, sometimes he gets depressed, where he will just sit and stare for, it seems like hours, you know, either outside, if he's on the deck, or in the sunroom.

Just lots of changes that are not him.

He was never like that.

Woman: I really miss the fact that we used to be able to have conversations, and some of the things we used to be able to do, like fishing and-- but sometimes he just can't grasp the idea of what's going on, so that's hard for me to deal with, and be in that situation with him, because it upsets me when he gets so frustrated and confused, because I want to help him, but I don't know how.

I have to watch my mom a lot.

She's not allowed to be left alone.

And I have to make dinner for her, make sure she showers, change her clothes whenever she goes out.

I do the dishes, I vacuum, all that kind of stuff.

Nick: For a while, I had my life on pause, just taking care of my mom just full time, basically, when she was pretty much at her worst, having to give her her medications.

She hated being trapped in the house.

So just pretty much being her chauffeur, just doing anything she wanted.

You know, she's my ma.

If she asks me to do something, I'm going to do it.

Woman: My dad is 61.

He was diagnosed with early-onset Alzheimer's-- I'm terrible with dates, but it's about, like, six, seven years ago now.

And I'm his caretaker.

I have-- my brother and my sister support me a little bit, but I'm the one who lives with him.

I think it's one of the more difficult things that we do is go grocery shopping.

It's kind of confusing, there's a lot of people, and it's easy for him to get lost.

He wants to be independent, but he can't really do that, so getting him to, like, hold onto the cart or stay right there so I can grab something.

I mean, you're constantly looking over your shoulder to make sure that he's not walking away or following a stranger.

I am very envious of most of my friends because they get so much freedom and they get to do what they want most of the time.

And I wish sometimes I was in their shoes rather than mine, but I don't know.

I got a lot closer to my mom since she had got Alzheimer's.

Dan: The impact Alzheimer's has on couples can be especially profound.

We're just gonna take a little walk.

Take a little walk?

-Mm-hmm.

-Okay.

Will: I miss my companionship with her, you know?

We had-- she was very opinionated.

She was one of the brightest minds I've ever met.

We had a lot of good times, you know?

We laughed a lot.

We talked about everything, And I miss that, and I miss being loved.

People ask me, "Well, how do you manage your relationship with your wife now?"

And I'll be honest.

She's become more a sister than a wife, because of just the natural evolution of the relationship.

You know, we touch each other, we-- you know, on the face, we hug each other, we walk together, or I will tease her.

It's different.

It's, you know, it's not what I signed up for.

(whispering) These people-- I don't like 'em.

Mm-hmm, mmm.

Will: I'm a caregiver-- that's what I do.

I take care of her.

What do I miss most?

I miss everything.

I miss the woman I married.

Dan: This painting, titled "The Stage," depicts adjustments people have to make as they transition into becoming caregivers.

Learning to quietly do so much behind the scenes to support their loved one is never easy and not always perfect.

But these families learn to adjust, to live and to cope with anger, to become more flexible, display patience and practice forgiveness.

The hardest moments with her are probably when it's all of us at home and things are hectic, and people are moving.

Especially for dinner, she gets very confused and overwhelmed.

I have my own way about getting around situations, avoiding conflicts with her.

Every time is new and different, but most of the time, I'm pretty good about keeping her happy and knowing what to do and what not to do.

Nancy: I think the biggest thing that's changed about myself, and I have to be honest, and it's nothing I'm proud of, is that I am a lot less patient than I used to be.

I thought I would handle this much better than I have.

I'm impatient, I get angry, I get frustrated, I, you know, lash out sometimes, I feel guilty all the time.

So those are things and ways I have changed.

And I try to think about those and work on them.

Pam isn't her Alzheimer's.

We get frustrated with the disease.

We get mad at the disease.

We get irritated at the disease.

Sometimes we direct it towards her, but then we stop and say, "Wait a minute, "that's-- that's the disease that we're mad at.

That's not Pam.

We love Pam."

That's just the disease taking control.

We still love her.

We still care for her.

You know, that-- that love will never change.

The disease will change, but the love will never change.

Dan: Alzheimer's teaches us just how important relationships truly are.

For the longer we live with this disease, finding creative ways to stay connected becomes harder.

So when moments of connection do happen, these are moments to be treasured.

Woman: I love my aunt.

Always have, always will.

The relationship I have with my aunt now is on a different level.

It's more treasured.

I remember one time, I was reading a book to her, and she just stopped me and said, "Thank you so much for coming over and doing this.

I really enjoy this time together."

Those few seconds, I knew that was my aunt.

Peter: We have good moments with her.

You know, we get her to smile.

Occasionally, I can get her to dance a little bit.

You know, and that's important, that we see that she's still there, that Sylvia's still with us, and she's still happy, and that, you know, we can still kind of hold on to that and know that, you know, that she's with us.

Alexandra: Me and my mom, even though she can't really hold up a conversation as well as she used to, we like to do lots of things together.

We'll go grocery shopping together, make cookies, desserts together.

It's actually pretty fun when she's being fun and goofy, so I like doing things with her.

Nancy: Mike has always loved being outside.

He loves being with his grandchildren.

His granddaughters will sit with him on the swing on a nice day.

He always likes somebody to be with him.

Kyle is the older 15-year-old, and he always is happy to help Mike fix anything.

So if Mike wanted him to, say, hang some bird feeders, or fill the bird feeders, Kyle is always happy to do whatever Papa needs.

They adore him.

They...

I'm sure they get aggravated and frustrated like the rest of us, but they never let it show.

Mike: One of my favorite things to do is to sit out on our deck and look at the forest preserve and the water and the pond, the birds and the wildlife with my kids, my grandkids, my wife.

And heaven can't be better than that.

Dan: For those of us living with younger-onset Alzheimer's, finding others who understand us, that surround and support us, is deeply comforting.

That's what this final painting represents-- we're all in the same boat together.

In the mid 1990s, Hillary Clinton wrote a popular book, called "It Takes a Village."

Though she wasn't referring to people with Alzheimer's disease, she could have been.

For it truly does takes a village to care for those who can no longer care of themselves.

And villagers always want to do one thing-- make the village stronger, and make the village more resilient.

Making our neighborhoods a more friendly place for those living with Alzheimer's and other forms of dementia starts with education.

Imagine learning to recognize signs and show compassion toward people who are living with dementia.

What if we understood that maybe there's a reason why that person is having trouble ordering from a menu, or paying a bill, or answering a simple question?

As part of the National Alzheimer's Plan, Dementia Friendly America is a movement to help raise awareness and bring support to people who have dementia, and to the communities in which they live.

Female narrator: As members of a community, it can be easy sometimes for us to spot someone in need.

But when it comes to people with dementia, the signs are not always so obvious.

Without the support of the community, families and individuals affected by dementia can often feel invisible, lost, and, in some cases, in danger.

Everyone has a role in creating a safe and supportive dementia-friendly community.

Dementia Friendly America has really identified all of the kinds of organizations at the community level that interact with people on a day to day basis, whether it's the faith community, whether it's police, firefighters, the clerks at grocery stores or bank tellers, hospitals.

And the idea is really to sensitize them, educate them about what it means to have dementia, and how they can change their behavior so that they can really actually support people, rather than ignore people.

Let's face it, with the diagnosis every 66 or 67 seconds, we're going to see more than the five million Americans currently facing Alzheimer's-- that number's going to grow.

They need help.

It isn't just a matter of suffering or suffering alone, it's support.

It's giving them a helping hand to get through this.

And there are many who can do that.

Woman: At the National Institutes of Health, and specifically here at the National Institute on Aging, we think it's very important to provide information to the whole community, in a way that makes sense to people, and will help them to understand what's going on with the diseases.

Especially when you're a younger person diagnosed with Alzheimer's disease, it's critically important that you don't withdraw and stay to yourself, but really engage with your community-- your friends, your family, co-workers, and help them, educate them about what this disease is all about.

It's important for communities to become active and supportive, because this is a disease that people cannot bear alone.

But we can mitigate the burden.

We can come alongside, and in some ways, we can lift the burden and make it easier, even if we can't remove it entirely, and I would suggest that that's what communities are for.

People live in communities.

They live in homes, but they live in communities more broadly.

And they interact with the different parts of that community on a day-to-day basis.

That's where people are.

That's where we need to meet them.

That's why Dementia Friendly America is about communities.

Dan: For many, their village is their family.

As Mike's Alzheimer's progressed, his family decided to move close to each other in order to help with his care.

Nancy: To me, family is-- is everything.

The importance of family can't be understated.

And I don't know how people survive without family and support.

I really do not.

My children...

Excuse me.

Again, the fact that they would just give everything up to help is...

It's just more than anybody could hope for, you know, with their children.

And the grandchildren are amazing.

Woman: I don't know any families that are closer than mine.

I feel very lucky about that.

When, you know, somebody's down, everybody pulls together.

That's just what we do.

You know, no questions asked.

Somebody needs help, everybody goes.

Woman: Since we've moved in together, I have a new understanding of what it means to be a 24/7 caregiver.

It's really different being with him 24 hours a day.

You know, sometimes he wakes up in the middle of the night, and no matter what time of the day it is, he needs something.

He'll always be my father.

No matter.

If he doesn't remember who I am, I still remember who he is.

And he'll always be my hero.

Always.

No matter what.

Peter: One of the questions I get asked by my fellow co-workers and people close to me is, "How do you manage your day?"

And I just have to be honest and say, I have to do it for the moment.

I mean, there isn't a moment during the course of the day that I don't wonder, or I'm not thinking about what's going on, how she's doing and stuff.

I'm taking care-- that's part of me taking care of my family, taking care of her.

My boys are the reason I'm able to function, to put in a long day, and, you know, know that I have-- I can do what I have to do because I have their support, and I know that their mother's well taken care of.

None of this would be possible if I didn't have the support and the love of my boys, so...

Sorry.

Dan: Love is one of the most powerful emotions we carry in our hearts.

And faith is one of the most powerful beliefs that we carry within our souls.

For millions of families like Lora and Pam's, their place of worship provides for them that safe haven where they can ask questions and receive love and support.

Man: When I think about, sort of the role of the faith community, I think at the heart of it, it's about not letting anyone be in isolation, so it's a combination of walking side by side with someone.

It's about being a safety net.

It's about providing a shoulder.

It can be even an embrace at times.

I think one of the things that's most important in working with the kids is to create a safe environment, first where they can just speak, and they can share what's on their heart.

And if nothing else, it's simply to acknowledge, you know-- "The question you have, that's a hard question.

"And one of the things we learn in life "is there aren't always easy answers or good answers, or complete answers to some of these questions."

With my discussion with the reverend, I-- I learned that God really doesn't try to cause this disease.

He's trying to help us get through it.

So I really don't think-- I thought I should be mad at God, but then I learned that I shouldn't, because He's really just trying to help us.

The reverend did tell us also, that like we weren't facing this alone.

That there were plenty of people who could help us out.

And that it was okay for them to know, and it was probably better that way.

And that we could always come to him or plenty of other people.

Reverend: If God were a person, God has really big shoulders.

And God can take our anger, God can take our frustration, and God won't abandon us when we ask those hard questions.

And this part that we can't find resolution to, we pray about.

We pray about it, and we carry this burden together.

Families may come to find they need to connect with programs like home care, adult day services, support groups, long-term care or hospice.

Sometimes it takes several attempts to find the right fit, but when you do, these programs become your lifeline, your village.

It goes on and on and on and on... Jean: We needed home health for helping her, so that she eats lunch properly, so that somebody takes her for a walk, does her laundry.

She also wants to participate with them, so it has to be a good fit.

And it seems to be working out just fine.

It helps the family, because they know that they can go and do what they need to do and have a little relief there.

Michelle and I go out sometimes and we exercise, and she helps me make meals.

And-- and she makes sure that... that there's something positive that she's going to help me with.

Michelle: I know when Annette is having a bad day.

When it's bright outside, she's more vibrant.

When it's a darker day, I know that she's going to get irritated and aggravated.

So what I do is I will put on her favorite music on my iPod, and we'll start-- I'll start-- activate that movements in her, to move forward in her day.

If she gets upset about something, I'll wait a few minutes and I'll go back and I'll say something more-- "Oh, it is such a wonderful day outside, isn't it, Annette?"

And she'll say, "Oh yes."

And then we'll start off on a better foot.

A few years ago, Annette's husband, Juan, and myself decided that it might be time to start looking for day care.

And looking for day care for a young person is different than looking for day care for an elderly person.

Woman: We've been part of Annette's extended family since she started attending several years ago.

She came with the distinction of being the first person who came to us with early-onset Alzheimer's.

So this was an opportunity for us to learn more about what that means, and how we can adapt our program to those needs.

Woman: Annette is our youngest client here at the adult day program, so I have to keep that in mind as I prepare for the day, to have more physical activities involved, making sure that when we reminisce, it might include the '60s and '70s for her benefit, because that sparks a lot of memories for her.

And exhale.

Nancy Frenk: Sometimes she'll lead exercise, because she used to be a yoga instructor, and so now she'll lead some of our exercises.

And you can see that she just lights up when she gets to do that type of activity with everyone.

I know I have Alzheimer's, but I know I have a lot of people that care for me.

My experience is that a lot of the day facilities are a lot of women, and so he was one of the only men in the group... Dan: Being able to come together with others who understand younger-onset, to speak candidly, to exchange ideas, to bond, can offer immense comfort.

This is the role of support groups.

The Rush Alzheimer's Disease Center's support group, Without Warning, offers a comfortable place to share and to build friendships for the person diagnosed with the disease, their family, their friends and even their children.

We look forward to every month.

It's our, our hot date, as I call it.

It is so much fun.

We can't wait to get there because we feel comfortable.

There's that support from people that are going through it.

And we look forward every month to go.

It's very helpful.

She was like, "Well, it's gonna be okay, though, right?"

And I was like, "No."

No, but I think that's what has to be okay, is that it's not gonna be okay.

And I think you have to kind of accept it.

It's nice to talk to people who have similar experiences.

And the other thing that's really nice for me is getting a chance to hear ideas and, you know, things that I could be doing to help out.

It's kind of like a nice resource.

I feel like I've done my web searches, and it's nice to go somewhere and actually hear from people who've experienced it.

I think that's been the most helpful, is just getting to hear other people's ideas and things that they can contribute and help out with.

The people that we interact with in these support-group meetings means everything.

It means everything.

Placing your loved one in a long-term care facility is one of the most difficult decisions a caregiver has to make.

And placing someone who is comparatively young in an atmosphere that is typically caring for those who are older presents distinct challenges for everyone.

Will: The hardest part of taking her from my home to this new environment was that I didn't believe that anybody could care for her the way that I could.

You know, I know they didn't have the emotional attachment that I have, and the love for her that I did.

So I just found it difficult to turn her over to strangers, and that's what they were to me.

Woman: Will was so-- he was-- just didn't know, you know if this was my right choice-- "Should I bring her here?"

You could tell the guilt was just taking over him.

And we just constantly encouraged him, you know-- "You're doing the right thing, Will.

"You know, she's-- you know, the right training here, she's going to be fine."

So he eventually, you know, "Okay, okay," but it took a little while.

But he was okay.

You know, after a while.

When Tina came to us, she had a later stage of dementia.

She wasn't able to verbalize very well.

So, you know, our behavioral expressions training-- everything had to be done by just knowing what-- where she was, based on her expressions, her actions.

Because she was vibrant.

She needed to keep herself active.

She had a particular song -that she would hum all the time-- -Yes.

--and that will not ever leave my brain, Because we would have fun with that, with her, -and she loved it.

-The-- (both humming) And she would dance and hum that song, and we would be right along with her.

-And that brought her trust level with us-- -Yes.

--to an all-time high.

So when we would do that, something that she enjoyed of her own, she owned that, you know, and she-- and we-- she incorporated us in that.

And then she really began to-- she found her comfort zone.

She found her trust level.

And I found that to be very, very gratifying, to care for her.

Dan: Sometimes being around someone with Alzheimer's can make people feel uncomfortable.

As a result, many families, over time, lose friendships.

However, some friends find the courage to stay involved.

And for these families, their friends become their village.

Tom was diagnosed with younger-onset at the age of 60, and sadly, today is near the end of his journey.

For Tom and his wife, Mary, both long time educators, their friends and their work community became their source of support.

Mary: As Tom's Alzheimer's progressed, we realized that we couldn't do it alone, and that we needed support from our community, that we have people from our school district, you know, that has provided a tremendous amount of support.

It's important to give back as a community, because we're only as strong as the people that we surround ourselves with.

What are we teaching our children if we are not supporting others in the community?

We need to set examples by the way we live.

I know there are so many friends and so many people who have been touched by Mary and Tom, and they would want to give back.

So I came up with the Pea Pod Project.

And through GoFundMe, I set up an account and we ended up, in a matter of three weeks, raising $6,200 to give back to Mary and Tom.

Putting together a community initiative, like we have done for Tom and Mary, is not that hard.

It was simple for us to find little ways that we could give back, as simple as me going and getting 10 encouragement cards and handing them out to people in our school community and saying, "Hey, could you write them a letter?

I'll take care of the rest."

And the response back was amazing.

"Mary, just wanted to say hi.

"I'm thinking of and praying for your family every day.

You are such a strong and caring person..." "You are such a great example to so many other women.

"This is the start of your Sunshine Mail deliveries.

"May you be strengthened, touched, encouraged, "and feel the love, from your friends at Mark DeLay.

Love always, Kristin."

We're so lucky to have good friends.

Dan: Even young children can offer support.

For Tom, that was his seven-year-old friend Billy from down the street.

Billy's Mom, Michelle, shared such a sense of pride knowing her son always wanted to visit his good friend, even until the final days of Tom's life.

Billy would draw pictures for Tom and we'd send them, so he would have something to look at and enjoy and kind of remember Billy by, because they would talk sports together a lot.

So those pictures that Billy would do were just a way to brighten his day, and Mary's day too.

Billy: Tom is my friend.

He will be my friend forever.

I love coming over and just hanging out with him, talking sports.

And even though he doesn't talk back, I know that he's listening.

You know, when I think about care-giving, and I think about what it takes to be a person that understands the true essence of it, I think of Mother Teresa.

Mother Teresa had a statement that she made.

It says, "It's not how much you do, it's how much love you put into doing it," to coin the phrase.

Love is the essence of this.

Dan: As the person with younger-onset comes closer to the end of their journey, some families realize that hospice care can offer much needed comfort.

As Tom's Alzheimer's became worse, turning to hospice wasn't an easy decision for his wife Mary.

As the disease has progressed, Tom now is in end-stage Alzheimer's.

And one of the hardest decisions that I had to make is to put him on hospice.

It's hard to realize that the end of this journey is coming pretty soon, and that I'll be losing him, and that I don't want that to happen.

But I also want him to be comfortable.

So that he's not hurting, you know, through this end part of Alzheimer's.

You're doing good.

Hospice is taking care of our patients wherever they live to provide a comfortable, dignified end of life.

And that allows the patient and their families to make their own individual decisions about how that end of life will look.

So hospice truly is a support to our families to help them through this very challenging end-of-life time.

Mary: Tom and I have been... good friends.

We've had a great marriage for all these 30 years.

And that, even towards the end of this journey with the Alzheimer's, we can still be together and support each other and hold each other and just be together.

And so with hospice, we're going to make him as comfortable as possible.

I love you, Tom.

Building a community that surrounds you takes time and commitment.

It takes compassion and understanding.

What I have found to be one of the best ways to come together with your community, is by sharing your experiences with them.

Hopefully, by being open and honest, others will learn how to become more aware and accepting.

And with time, you'll find your circle of support will begin to grow.

Lora: It makes us feel great to know that there's people that we can-- that they're there to help, that are there to jump in if we need.

It's one of the most important things, is, you know, we can't do this on our own.

– Pam: Right.

-We can't do this.

This is-- this is way too big.

So how do we create a world that embraces kindness and caring?

How do we create a place where people can be themselves and feel surrounded by love?

My philosophy is do your best, and try to find love in other people, and be kind.

Dan: The long road you travel with younger-onset Alzheimer's disease will undoubtedly take many twists and turns.

From the loneliness and isolation, to the changes in relationships, the stress, the anger, guilt.

It's not an easy path to follow.

But finding community, whatever it may be-- family, friends, neighbors, faith, support groups, and seeking professional care, may take some of the weight you feel off your shoulders.

I can drop the ball whenever I want.

Somehow, they're there to pick it up.

And so I don't fear anything, to tell you the truth.

When they stand next to me, they know that anything can happen and somehow I'd get through it.

The stories you've just heard show that each of us has a responsibility in walking alongside those living with Alzheimer's disease.

So if there's one lesson we hope you will take away, it's that everyone needs someone to walk with.

It's our vision to create a world where anyone living with younger-onset Alzheimer's never needs to walk alone.

Alzheimer's can touch any one of us.

But no matter the age, it's "Too Soon to Forget."

Woman: Times like these, we need to be strong We need to carry on We need to get along, hold on And right what's wrong And times like these, we need to find a way To make a better day Keep our feet on the ground, turn around Come what may - Everybody - Everybody feels something - Everybody feels something - Everybody knew someone - Everybody knew someone - Everybody has a friend of a friend Of a friend, yeah Hey, everybody needs something Everybody needs someone to lean on To lean on Everybody needs someone - To lean - Everybody feels something Everybody needs someone Yeah, everybody needs that care Everybody, and it's too soon to forget you Too soon to forget Yeah Everybody Everybody needs someone to lean on Everybody feels something...