Dementia covers a wide range of brain health issues.

The most common form and the most well-known is Alzheimer's disease.

But the recent announcement that movie star Bruce Willis has a rare form of dementia has people talking about the disease.

Recently, a group in Nevada relaunched its efforts to create a more inclusive community for people with dementia and their care partners.

And joining us to talk about the disease that impacts millions of Americans and their families is Cate Inglesby, program manager for the Cleveland Clinic.

Lou Ruvo Center for Brain Health, and Caroline Beaumont, program manager with a Desert Southwest Alzheimer's Association.

Both serve as co facility owners of dementia friendly Clark County.

Thank you both for joining us.

Let's talk a little bit about dementia friendly Clark County.

As we mentioned, it's just relaunched.

Why is it so important to have that here in Clark County specifically?

And what does dementia friendly mean?

Yeah, so that's a great question.

We have our dementia friendly Clark County Community Action Group in Clark County because we want to hyper localized and hyper focus on the specific needs of our community here in Clark County.

Dementia friendly dementia friendly community actually means that it's a community that is supportive and inclusive of people living with dementia and their caregivers.

And Caroline, let's talk about that first meeting.

It was such a great turnout, positive news.

It was great to see the community come together and all of us have our own personal stories and connections to Alzheimer's and dementia.

And all of us are really there to make our community to come together, do a needs assessment, and find out what can we do as the numbers here in Nevada are growing very fast.

How do we protect those that are living with dementia and raise awareness and work together to make it friendly?

You know, we were at the airport and we saw a man who was lost and someone was taking advantage of him and he was buying them drinks.

And so we really want to look at those issues in the county and really what can we do together as a powerhouse of organizations to make a difference and have situations like that be something of the past?

And let's talk about you've mentioned so many families impacted by this.

It's important to know that both of you very personal.

My mom was recently diagnosed with vascular dementia after having a stroke about a year and a half ago.

So I can tell the stories of a caregiver and I can honestly speak to the overwhelming challenges that every caregiver faces.

And sometimes you might know, not that you might not know what type of challenges you're going to face as a caregiver until it it winds up at your doorstep fast and furious.

So these are some challenges that as caregivers, we seek to support.

Our caregivers and caregivers are actually part of the care plan.

And within our community, we want to make sure that caregivers have the appropriate resources.

And let's talk about you.

Yes, I got a phone call in the middle of COVID when my mom from New York, right in the height of the pandemic, that they had found my mother's car ten miles from her house, but they didn't know where she was.

So they went to do a wellness check.

And soon after that, it was the wide, fast roller coaster of dementia.

I didn't even know what dementia was.

I had no idea.

And trying to manage that from California was extremely difficult.

Even as a social worker for myself, I had such a hard time maneuvering the journey and getting the answers that I wanted and most importantly, getting her to a safe place.

They kept they kept discharging her because she had a COVID diagnosis and they couldn't release her to a nursing home.

So they would just release her home because they needed the bed.

So it was a horrible on top of everything, you know, here, the whole we want to forget.

But the pandemic made things a lot harder back then.

And both of you have already been offering wonderful courses.

Even during the pandemic.

A dear friend of mine was going through that with her husband, and she said it was lifesaving to have those courses online.

So let's talk about some of the courses that you do have right now for caretakers.

Right.

So education is key.

We always say that education is key when it comes to caregiving, and you have to stay educated as a caregiver.

So we offer a wide variety of caregiver support and education programs.

We have caregiver support groups for each type of disease that we treat and manage.

We have yoga for EMS and PD.

We have music therapy.

We have therapeutic counseling services.

We have our education programs such as our weekly lunch and learn programs that are going to go over all of the diseases that we treat and provide tips and tricks to manage those diseases.

We have a evidence based Powerful Tools for Caregivers program.

This program really helps caregivers learn how to de-stress and learn how to manage the challenging situations that they're involved in and really learn how to take care of themselves.

Because we've we've learned that caregivers are so busy taking care of other people that it's really difficult to take care of themselves.

So sometimes their medical conditions can kind of fall down that fall down the hill because they have they have so much responsibility.

And let's talk about some of the resources that we have.

Education, prisons, presentations to as well.

We have them online at Aldi dot org as a wonderful resource for caregivers.

So and we also have support groups throughout the state and we also have newly have launched one.

So for someone like myself, I'm caregiving for someone in another state.

So it's a group of people you can be anywhere in the country and take advantage of that group.

We also have a respite program which I run and we give out $1,000 a year to help with those costs.

But in doing so, we just hear the struggles, you know, and how it affects their health, their mental health financially.

Right now, I mean, there's 89,000 caregivers in Nevada, and it's costing 2.6 billion in lost wages.

So we hear their struggles and we're actually coming together to bring to put a retreat together this summer so that caregivers can get the resources that they want.

And it's coming from my own selfish experience of not being able to navigate and not knowing where to go.

And so we really want to put those resources together and help make that journey a little bit lighter.

And we thank you for what you're doing.

And again, we talk about the caregivers, the care partners.

And we do want to show you a quick video.

First of all, it's just celebrated a birthday with his family.

It was the first time that we saw him since his recent diagnosis.

And his wife, Emma, put out a very touching, emotional video.

And we want to show you a little bit about that so we can talk about the impact it has on caregivers.

I'm also raising two kids in this, so sometimes in our lives we have to put our big girl panties on and and get to it.

And that's what I'm doing.

But I do have times of sadness every day, grief every day.

And I'm really feeling it today on his birthday.

What goes through your mind when you hear that.

The struggling challenges that every caregiver faces in their caregiving journey?

This is very real.

Her grief and the struggles that she faces are very, very real in every caregiver's life.

I can say that it's an overwhelming job and it's it's a tough job, but it also is a job that comes from the heart out of love.

One of the things that you have going on right now as part of dementia friendly Clark County is the assessment on your website.

Let's talk about why that is so important.

And one of the questions on there talked about, do you know the ten signs of dementia?

And I don't think a lot of us know.

I didn't I had to go look it up.

Right.

So our community needs assessment is the most important key priority for dementia friendly Clark County because we need to hear the voices of all of our community members to determine what our strengths and what our gaps are within our community in relationship to dementia and dementia related resources.

We're also going to get a glimpse of some of the attitudes and beliefs that our community has about dementia through that survey.

So we as a community action group at Dementia Friendly Clark County, we're not able to kind of move forward with developing our goals until we have the results of that community needs assessment.

So we really need to have our community complete that assessment.

And like you mentioned, the ten signs is on there because like you like you just said, how many people don't know the ten signs And those are things that we're looking for is the awareness in our community about dementia and the ten signs of dementia.

So that'll give us another another level of a goal to work on, as maybe it could be creating that awareness.

And we'll put that on our website as well.

But what are some of the signs that we should be on the lookout for?

Well, I think.

That the most important thing to realize is that Alzheimer's is not and dementia and Alzheimer's are not a healthy form of natural form of aging.

It's just not.

And I think some of the signs are, you know, it's okay every once in a while I forget my laptop or I forget my keys.

But if you're putting the keys in the freezer, then that's a problem.

It's, you know, memory loss that disrupts your daily life.

You know, we see a lot of withdrawal, mood changes, you know, the spatial images, you know, forgetting things, not being able to retract that, remember it.

So it's, you know, sums it up with memory that affects your daily life.

But also you see a lot of withdrawal.

You know, my mom became very moody and we didn't understand why.

You know, now when we put the pieces together, now it all makes sense.

So that's why it's so important to know those signs with your family members before it's too late.

And I can tell you that it came in a day.

All of a sudden, I had to become an expert in something I knew nothing about.

And let's talk about that, because another great thing that both of you are doing is getting the information out in different languages.

You have a 24 seven hotline as.

Well that's in 100 languages.

And then we also virtually you can take all of our presentations, you can take them in Spanish, we have them in Mandarin, and we're working on more.

And also with the community assessment, that was one of the most important things for us is to get that out in different languages because we want all our voices to be heard.

And we had talked about turning your meeting off camera.

We talked about that people were volunteering to translate, which is so wonderful that the community really is coming together for something that is a health crisis.

Exactly.

And that's true.

And the community that we have built already through dementia friendly Clark County has really does have a hearts for this disease.

And they seem to be very committed and they really want to make our community a better place for people living with dementia and their caregivers.

So I feel like we have a very strong group right now that can move forward with our goals.

And let's talk a little bit about you had some of your volunteers and advocates up in Washington, D.C., the Alzheimer's Association nationwide.

Let's talk about what happened.

We had about 900 volunteers, advocates from our AME movement, which is for legislation.

And they were they're basically just saying enough, you know, we want more time.

The the Center for Medicaid Services blocked the FDA treatment that we have out.

So which can be used in early state, early stages of dementia.

It only works in early stages.

So they had blocked this.

So that's why we were there kind of raising awareness and kind of putting our voices out there and say, look, you know, D.C., we are here, our voices will be heard.

We want more time with our loved ones.

This drug must be approved.

And one of the first drugs that hasn't been for Medicaid and Medicaid.

So there were then provides that that becomes health equity and who can afford it if you can't afford it, you can't get the treatment.

And right now, it's also important to know that there are no cures, Correct?

That's why it's so important.

Early detection.

For early detection to get the.

Medicine slowed down.

Let's talk also about the fact that there are different forms of dementia, because I think a lot of times we just Alzheimer's.

But with the recent Bruce Willis diagnosis, FTD, a lot of people don't know about it.

What are some of the types of dementia.

We'd like to to call dementia as an umbrella term?

So there's four, four main types, but there's over 100 different types of dementia.

But the four main types are Alzheimer's dementia, which is the most common frontotemporal dementia, Lewy body dementia and vascular dementia.

And that's what my mom has.

So it's sort of an umbrella term and it's something that we all need to really start thinking about, particularly in our community with that prevalence.

And let's talk about clinical trials because that's so important.

Something that I learned from both of you is the fact that you are healthy.

You can still take part in the clinical trials.

It's just as important for those that do not have dementia or or our team.

Normal and healthy aging because we don't have what the brain looks like healthy.

We can't compare it.

And we also need just to understand the disease.

We need to understand the brain at all stages of development of our lives.

And the clinical trials we passed by that big, beautiful building right there in downtown.

Yes, we have a very robust clinical trial program.

We've conducted over 110 studies over the past 14 years since we've been open.

And we really do need those citizen scientists as what we call them.

As you know, the future of breaking and cracking these diseases.

So we like to say if you have a brain, we have a study for you because we're always looking for healthy controls.

And before we leave, I do need to ask you about the facts and figures report that was just released.

Let's talk a little bit about some I'm reading this More than 6 million Americans are living with Alzheimer's.

One in three seniors dies with Alzheimer's or another dementia.

And the thing that was most shocking for me is that now there's 90,000 caregivers in the state of Nevada which jump from 50%, but the numbers didn't.

So either people aren't reporting it or people are not getting that.

Do you know the diagnosis?

And they're just being taken care of?

And that's, again, really scary because it goes back to the $2.6 billion of lost income in this state.

And also their mental health has decreases, their own physical health decreases.

And that to me is the biggest the caregiving numbers.

But yes, we're growing one in five women, one in ten women will have Alzheimer's.

We know it.

It affects them more.

Are minority population and at a greater rate.

And we also know we're the third fastest growing state in the nation.

So we're really trying to prep out there with our partners as the Cleveland Clinic and get out there and spread awareness because we know we have a fight on all levels.

Caregiving ourselves.

Those with dementia are businesses that work with, you know, our communities.

We really need to get out there and raise awareness.

Thank you so much for what you're doing, both of you.