(gentle music) - [Narrator] Funding for Utah Insight is made possible by viewers like you.

Thank you.

- [Narrator] Next on Utah Insight, treating dementia with dignity.

Local experts voice their concerns about the devastating impact of dementia on patients, family members and more.

- It is very destructive to the family.

It is complicated for care.

- [Narrator] Learn the early signs you should know about, plus what's being done to help caregivers.

(upbeat music) - Welcome to Utah Insight, I'm Liz Adeola.

June Marks the beginning of Alzheimer's and Brain Awareness Month.

And we here at PBS Utah want you to know more about this and other dementia related diseases.

6.9 million Americans have Alzheimer's according to the Alzheimer's Association.

And in Utah, the Utah Commission on Aging found that more than 34,000 people over the age of 65 live with Alzheimer's disease.

That's one out of every nine people.

The National Institute on Aging is kicking off Alzheimer's and Brain Awareness Month by focusing on the risks in the Latino community.

The organization found that Latinos face a higher risk of dementia compared to other groups.

So we caught up with a local volunteer organization, Mentes Activas, which means active minds to learn why and see what they're doing to make a difference.

(speaking foreign language) (speaking foreign language continues) (speaking foreign language continues) - [Narrator] It's an art project unlike any you've ever seen.

(speaking foreign language) (speaking foreign language continues) - [Narrator] Grafted by hands that are trying to hold onto something precious.

Fleeting memories.

(speaking foreign language) (speaking foreign language continues) - [Narrator] Marcela Alejandra Fioramonti spent nearly a decade diving into the topic of dementia.

(speaking foreign language) - [Narrator] as president of Mentes Activas, she and other volunteers have a common goal of informing Utah's Hispanic community about dementia.

The Outreach program set up shop inside the Kerns Library for three years and this year expanded to the Granite Library.

(speaking foreign language) (speaking foreign language continues) (speaking foreign language continues) (speaking foreign language continues) (speaking foreign language continues) (speaking foreign language continues) (speaking foreign language continues) (speaking foreign language continues) - [Narrator] But members of believe that bringing the Hispanic community together can disrupt that decline.

(speaking foreign language) - [Narrator] The Alzheimer's Association says it's unknown why Hispanic Americans are one and a half times more likely than white Americans to have dementia.

And that one third of Hispanic Americans seeking healthcare say they've experienced discrimination.

Mario says in Utah alone, some of the patients he interacts with don't have access to resources or have been denied service.

He also shared that some people are uncomfortable visiting healthcare offices where English is spoken, and so they don't go.

(speaking foreign language) (speaking foreign language continues) (speaking foreign language continues) (speaking foreign language continues) In that group Mentes Activas run solely off donations and was founded by seven volunteers who discovered they all had a connection to Alzheimer's.

Here to explain how this impacts us all as we explore ways to treat dementia with dignity, we have Kristy Russell, who is the state plan specialist for Alzheimer's disease and related dementias with the Utah Department of Health and Human Services.

Dr. Natalie Sanders, the Medical Director of the Madison Geriatrics Program or clinic at University of Utah Health.

And joining us via WebEx from St. George, please welcome Aubrey Brown, Dementia Care Specialist, who also works with Memory Matters.

And Aubrey Memory Matters is an organization that brings people together to talk about this issue, especially caregivers.

Can you talk about how you got involved?

- Back in 2012, Memory Matters was founded and designed to help support families and those with dementia.

I was working in senior living communities, both skilled and assisted living at the time, and realized while I was working with people on a daily basis, their families didn't have the support that many of them needed.

I was able to connect with the community resource of Memory Matters and have been hooked ever since.

- And how has this caused personal for you?

- I have family members that live in my home that I get to work with and care every day.

I find that clinically understanding something and then emotionally being able to deal with it in a personal relationship poses different challenges.

- And Kristy you work and connect with organizations and groups like Memory Matters all the time.

You see what's going on all over the state.

How does this impact people in rural communities a little bit different?

- So in our rural communities, some of them have fewer resources.

I wanna say all of our areas.

We have 12 area agencies on aging in Utah, and each rural area has one of those.

But, when you're looking at some of the more rural and frontier areas in Utah, it can be a really long drive to get to those locations.

And so some of our older adults and folks living with dementia and their care partners can struggle navigating to those resources.

If they're not comfortable with virtual meetings, they may feel more isolated.

There's less public transportation.

So if someone with dementia is living alone and they are no longer able to drive, how are they doing their day-to-day activities, going grocery shopping, maybe going to a doctor.

There's also fewer specialists and providers that feel confident making a dementia diagnosis and having those conversations with families in our rural areas.

Because our rural area providers tend to be the one-stop shop for every disease out there.

And so there can be a struggle to reach those specialists.

- A lot of unique challenges.

Is anything being done to address those challenges?

- Absolutely.

So we have a Utah Alzheimer's disease and related dementia state plan.

And along with that comes our coordinating council, which is open to the public.

But we have everyone from people living with dementia caregivers, professionals, people with just an interest in dementia.

And together we're working to collaborate, provide more services, provide more education to any providers or really any person in any workforce, restaurants, anywhere about dementia, how to have those conversations, how to support the caregivers and the person living with dementia, and just how to increase quality of life.

And so we're working on that every day with our state plan and our council.

- Because education is key, right?

Dr. Sanders, can you tell us some of the misconceptions you've heard over the years?

And by all means, feel free to go ahead and debunk those misconceptions.

- Thank you.

I think probably one of the biggest misconceptions out there is that someone brings in their mom or their loved one who's having memory troubles and they say, "Oh, that's just a normal part of aging."

And yes, it is normal to lose some ability to process as information quickly and to be able to learn new things as quickly.

But it's not normal to lose all the memories.

And so I think that's one of the reasons why it's so important to get a diagnosis.

And it at the very least, just talk with a primary care provider about it.

- About how long does it usually take for people to get a diagnosis?

Kristy or Dr. Sanders?

- In my experience, it really depends on the person in the family.

Both the provider and the family has to say, "Hey, let's do these tests."

And that can be a really scary thing.

So sometimes it can take years.

In my personal family experience, it was almost a decade of me poking and saying, "Hey, I think I'm noticing something" before they finally went and talked to a doctor.

- Yeah, yeah, I would echo that as well.

I think it really depends on the family and, you know, I think if one thing that can come out of this conversation today is really encouraging people to be their own advocate and patients and families to be their advocates, that that would be a great thing.

- Yeah and it takes a lot, especially for families and caregivers as well.

I've heard that caregivers are filling the void for the dementia care workforce shortage.

Aubrey, what have you seen in your area as far as that?

- The education we can help families obtain to fill that gap is important.

But I find that many of them are overwhelmed by the idea and it's that community that we bring together where they can start supporting each other and learning from each other.

Where we find that growth, I really hope that the providers in our area can start to kinda fill in that gap on their end as well.

But in the meantime, we've gotta do everything we can to educate ourselves and become better caregivers.

- And you educate people as well you've taught some courses on this.

Are you seeing a demand of students coming to those courses in those classes.

Who are you seeing in those courses?

- I'm seeing a lot of new CNAs and nurses coming into the field.

Last night I had 25 CNAs in the class who had questions about basic behavioral issues, anger and aggression, toileting, very basic questions that just aren't being addressed in normal classroom conversations.

- Very important stuff for people to learn about.

What difference does that make having the right skills to address those things because a lot of the people who are caregivers don't have a lot of information, so what kind of a difference does that make to know more about that?

- So I think you don't know what you don't know.

And proactively coming to these classes, even if you don't know someone right now who has dementia, if you might be interested in it, showing up to some of the classes that we teach statewide or even virtually and learning just basics about dementia, about communication, how it affects the brain, it gives a lot of empathy to the disease.

It gives both the person with dementia and anyone, when I say care partner, care team, that can be community members, family members, chosen family, actual family, whoever.

It gives the ability to understand what's going on, validating their feelings, but it also helps keep them out of that crisis mode.

If they get the education earlier, maybe during the class they're thinking, "Oh, I don't need that yet."

And that's okay.

But later they can come back to it and say, "Oh, that's what I learned" when they actually need it.

And I think that that keeps families outta the crisis mode.

It helps promote a healthier way of living, less stress.

And the person with dementia, the earlier you start getting the diagnosis and the education, they get to be a part of planning for the future and what their care goals are for the future, which I think is huge because all of us wanna be in charge of our healthcare, right?

And unfortunately with dementia, as you progress into the later stages, you're not necessarily able to have those conversations as clearly and as easily as you can in the early stages.

- One of the things that you said was it results in less stress.

And that's something that sometimes we don't focus on is the stress that is put on the caregivers.

What help is there for caregivers?

- So I think, you know, one area that can really be helpful for caregivers is honestly just going online and then searching up these kinds of programs that are out there.

You probably have more specific examples.

There's a ton of books out there that, you know, I think the one them that comes to mind is a 36 hour day that just kind of talks through how difficult this is.

I think reaching out to social work, reaching out to families and friends can also be really helpful.

- Yeah.

And, so at the state, we have our own dementia website where we have links to resources and things like that.

But you can also reach out to those local AAAs, like I mentioned earlier.

They're going to be the experts of what's going on in your area.

So if there's education, if there's support, there's also a family, a national family caregiver support program that's offered through the Older Americans Act.

And every area agency on aging offers that program.

And it's based off of caregiver stress.

That's how you get accepted into the program.

It's not based off of income or other things.

And that provides case management and kind of someone to follow you through the journey.

The Madison Clinic and the Department of Neurology here at the university offer what we call care consultations, where a family member and the person with dementia, the whole care team can sit down with a social worker and they help walk you through what you need to plan for.

I think there's a lot of opportunities that people just don't know about 'cause like I said, you don't know what you don't know.

And a lot of folks don't identify as caregivers.

So I'm just the daughter, I'm the granddaughter, I'm the husband.

And so I don't need caregiver resources.

I'm not a caregiver, but let's help identify as a caregiver and get them into these resources that are available.

- Absolutely.

Well, new this week, research from economists at the Federal Reserve Bank of New York and medical experts from Georgetown University found that financial issues can be an early sign of Alzheimer's.

For example, late payments, credit scores suddenly plummeting, unusual purchases.

The report published in the New York Times pointed to risk tolerance changes and a deterioration in decision making with researchers hoping that, "The data could eventually allow them to develop a predictive algorithm that could flag people who might be suffering from impaired financial decision making associated with Alzheimer's disease."

And those are a few signs.

What are some other signs, Dr. Sanders that people should be aware of?

- Yeah, I think one of the most important things is memory impairment, but particularly when it's noticed by a family member or a loved one.

So lot of patients that come in that say, "I'm having troubles with my memory."

If it's self-reported, there's actually some good data that it suggests that those patients may actually be...

It doesn't mean that they don't need help, but those patients may actually be suffering more from like a depression diagnosis as opposed to dementia.

So that family caregiver or a loved one involvement is really important.

You mentioned the financial thing and one of the things that we do in geriatrics is we take a really detailed functional history.

And what that means is we go through and say, you know, how are you really getting along in your day-to-day activities?

So you're, you know, bathing, dressing, ambulating, and then also kind of the ones that require a little bit more cognition.

Like, how are you really managing to take those 15 medications that your primary care physician is giving you or your multiple specialists?

Or how are you really managing to pay your bills?

And once we kinda start getting into that detail, that's oftentimes an eye-opening thing for family members to go, "Oh gosh, I didn't realize that mom or dad or whomever was having troubles with their finances," or, "I didn't realize that their meds were such a mess" and whatnot so... - This can be a really debilitating disease that sometimes people feel like they're going through it alone.

Aubrey, how often are people trying to go through this alone?

And can you talk about what difference, you know, what a difference it makes to join up and link up with organizations and have a community while going through this?

- Absolutely.

There's still quite a large measure of taboo, still people not willing or able to talk about mental health, but especially dementia, memory loss, things that they don't understand.

I'm finding that you asked previously about the signs and symptoms we watch for, I'm always queuing people to look for isolation, social withdrawal, avoiding things that they used to do as we find caregivers starting to recognize maybe the shame or the disconnect with their loved one.

Or able to start having open conversations about why is that happening and what do we do about it.

- Yeah.

And before we wrap up, I do wanna ask you all if there's a way that people can prepare for a diagnosis or even if they should be preparing for a diagnosis.

Kristy.

- I think that dementia or any like brain issues, a lot of people think, "Oh, it's only for older people, I'm not 65 yet I'm not gonna get it."

The reality is there are types of dementia that affect people before the age of 65.

So I think trying to reduce your risk is very important, but that's not a guarantee.

I think to prepare for a diagnosis, you have that conversation with your family, you go into your provider as a team and say, these are the things that we are noticing and be as honest as possible.

And then I think if you're concerned about a dementia diagnosis, even if you haven't made that step to go to your provider, get the education, there are support groups out there.

There's a lot of education.

Mentes Activas provides fantastic resources.

We have groups like that all around the state providing resources to different cultures and things like that.

And I think it's important to know there are things out there for everyone and there are people that can help you find that.

And I know I keep repeating myself, but the area agencies on aging are really going to be your know it all in your area and us here at the state level, we're here to help you find those resources.

And really that's what we're hoping for everybody.

You get the resources and it kind of lowers that stress and makes you feel more confident to get that diagnosis and then work through it together.

- Absolutely.

And what are your thoughts on this, Dr. Sanders?

- Yeah, I think that one of the ways to prepare, I mean even if you're not sure or you just don't know is really just having very open conversations about what is it that you want your life to look like in this chapter, you know, whatever chapter you're in, whether it's your midlife chapter, you're older than 65, you know, identifying what your goals are, identifying what matters to you so that if you do receive a diagnosis of dementia or some other, you know, chronic illness, that is going to take away your ability to function independently.

Your family and your loved ones know what matters to you and you've gone ahead and done the planning ahead of time.

It's also really important to just manage regular risk factors and those, and that's low hanging fruit.

Not always the easiest thing to do, but getting regular exercise, controlling your blood pressure, eating a healthy diet, and you mentioned the social isolation, you know, making connections with people is so, so important as we go through life.

- Yeah and Aubrey.

- We need to continue to inspire hope.

We need to recognize that with education and with support, we can have a beautiful life, even if that includes a diagnosis of dementia.

- Yeah.

Well, thank you all for being here for this conversation.

I do wanna just open up the floor and see if you have any final thoughts, anything that we didn't address or discuss during this conversation.

Kristy.

- Like I mentioned, we have our state plan.

If you want your voice to be heard, you can always reach out to me on our website, it's just dementia.utah.gov.

Simple.

You can reach out to us if you wanna see something that not offering you.

The legislature really is supporting this effort and I think it's important to note that the amount of partners that are coming together and trying to be the voice of caregivers and people living with dementia is important.

But if you want your voice heard, your voice is just as important as mine.

So let us know if we can do anything for you.

- Absolutely.

Dr. Sanders.

- I think the thing that I would say is that we think of Utah as a young state, but it's really a young and an older state.

And so this is a major issue in Utah and we need to be paying attention to it.

So I'm just, I'm so grateful that you had us have a chance to have this conversation.

And Aubrey.

- I would say we really need to champion caregivers.

We really need to recognize that the support out there for them is to make their lives easier, but they need to give themselves a little grace as well.

It's a very difficult thing to challenge this disease.

One person may have a diagnosis, but a family suffers from dementia and we need to be ready to embrace that family and caregiver circle.

- Absolutely.

Well, thank you all for joining us here today to share this information.

I know that it's probably helped families during this time.

Coming up next week on Utah Insight, we dive into issues surrounding Utah's declining water quality and look at the state of our waterways, what can be done to improve Utah's water.

That's the big question that we're asking next week.

We are inviting you to join in on the conversation and tell us what you think by using any of the methods that you see on the screen.

You can email us, give us a call.

We are also on YouTube as well there's been a lot of conversation there and you just might hear your comment on the show like this one from Jerry Soderquist on amping up electric vehicles.

- [Jerry] I would never own an electric vehicle.

They're unreliable and just one big problem after another.

Goodbye.

- Short and to the point.

Thank you so much for calling us Jerry, and thank you for connecting with us and watching Utah Insight.

We'll see you again next week.

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