According to the National Institute on Aging, Alzheimer's disease is an irreversible progressive brain disorder that slowly destroys memory and thinking skills.

Eventually, the ability to carry out the simplest of tasks is no longer possible.

This heartbreaking, life-altering disease affects patients and family members alike in different ways.

On this episode, we're going to look at the medical diagnosis support systems within the community and talk to one woman who has faced watching her father succumb to the symptoms of Alzheimer's disease.

Welcome to A Su Salud, Cheers To Good Health.

I'm your host, Genesis Ortega.

We're broadcasting from inside the Public Media Center in Bethlehem, Pennsylvania.

Our first guest for this show is St Luke's University Health Network expert, Dr Roopa.

Thanks, Doctor, for joining us today.

Let's jump right in to today's topic.

Alzheimer's disease.

What is it exactly?

- So, Alzheimer's disease, it's an irreversible progressive brain disorder that slowly destroys memory and thinking and eventually the ability for a patient to carry out simple tasks.

So, Alzheimer's disease, it's one of the most common the sixth most common cause of death in the United States, causing about 121,000 deaths each year, or 4.23% of the total mortality.

- When a patient has Alzheimer's, what physical changes are happening in the brain?

What's happened to cause the disease?

- So, there are many theories about the causes of Alzheimer's disease.

You know, we have to look at the different theories and the most common theory is one which involves the deposition or abnormal deposition of specific proteins in the brain.

And those proteins are called amyloid or tau proteins.

And what has been found, and just to give you a little bit of history background, is back in 1901, Dr Alois Alzheimer, who the disease is named after, he worked at a mental asylum, and somebody had dropped off a patient... A husband dropped off his wife because she was not able to recognize him.

And, you know, it was an odd presentation for an asylum because they were typically seeing patients who had schizophrenia.

Dr Alzheimer followed this patient for about six years.

And when she did pass, on autopsy, when he dissected her brain, he saw a bunch of abnormal quantities of the amyloid protein and tau protein that had caused tangles.

And that's the hallmark for Alzheimer's disease to this day.

So, in terms of, you know, the changes that are happening in the brain specific to Alzheimer's, that's one of the theories.

But there are many theories that people are working on.

New groups are actually recently stating that Alzheimer's disease can be considered as a type three diabetes.

So there's many schools of thought.

But at this point, that's really the etiology we kind of follow and try to target treatment therapies and clinical trials through.

- So, Dr Roopa, let me ask you this.

What are the symptoms of Alzheimer's disease?

- Well, the symptoms can vary based on the stage of Alzheimer's disease.

The simplest way I kind of I categorize Alzheimer's is by breaking it down into the preclinical stage, early Alzheimer's, moderate Alzheimer's and then severe Alzheimer's.

But basically, you have to look at Alzheimer's as a clinical syndrome that encompasses memory as the main deficit.

So there's many different types of dementia.

And with each dementia, specific deficits are the predominant feature.

So, with Alzheimer's disease, memory is the most typical or first sign of cognitive impairment that you'll see.

But to break it down, preclinical Alzheimer's disease, what recent research is showing is that there is changes happening structurally in the brain, maybe about 10 to 15 years prior to a patient showing up in the office with symptoms of memory concerns.

So that's the preclinical stage, where they're perfectly fine, no symptoms.

Changes are happening before they actually have the symptoms up to 10 15 years ago.

Somebody who's got mild Alzheimer's disease, they may look healthy, but they're going to come in with symptoms like having trouble making decisions or the family actually is going to be the one telling you that the patient has poor judgment or they've lost their sense of initiative or they're taking longer to complete some of their daily tasks.

They're repeating questions.

They've got trouble with handling money.

They might be misplacing things or there's a mood change, personality change.

That's mild dementia.

With moderate dementia, you're going to see increased memory loss and confusion.

The patient is typically unable to learn new things.

They've got difficulty with language, writing, working with numbers, difficulty organizing their thoughts or thinking logically.

And then with severe dementia... And I'm just giving you a brief few examples of the symptoms.

Certainly there's more.

But somebody who's got severe dementia, they're going to have that inability to communicate.

You're going to see them having weight loss.

Some of them have skin infections.

They've got difficulty swallowing.

They're moaning.

They're groaning.

They may be sleeping more.

They lose bowel and bladder control.

And those are when you know this patient is nearing that severe dementia or end stage dementia from a symptom perspective.

- So, Doctor Roopa, is there anything that can be done to slow down or halt the symptoms or the progression of Alzheimer's?

to all of my patients and family members is you've got to stay active mentally, physically and socially.

Physical activity...

There was some research coming out of Harvard in 2020 that showed that physical activity increases the blood flow of oxygen to the brain.

But it's also been shown to create new brain cells and specific portions of the brain, specifically a part of the brain we call the prefrontal cortex, which houses a structure called the amygdala, and that's responsible for emotions.

And it's also responsible, the prefrontal cortex is responsible for how we perform something we call executive function, or how we organize and plan our thoughts.

And those are the means or functions that are affected in diseases like dementia, like Alzheimer's.

The other thing exercise does is, again, it's been shown to form new brain cells in a portion of the brain called the temporal lobe, which is where the hippocampus or the structure responsible for short term memory, lives.

So if we can improve blood flow to these areas, the research is showing that you can produce new brain cells in these areas, and that gives us a chance to slow that whole process down, you know, for amyloid deposition, deposition,e.

Mentally, socially - we want to challenge the patient to get them out of their comfort zone.

So you want to exercise the brain.

Just like every muscle, you don't use it, you lose it.

So we challenge them with cognitive training exercises.

There's a lot of excellent apps online I recommend to my patients that do a lot of cognitively stimulating questions, so it challenges them.

Socially... You want to keep patients social, because that's a huge part of your overall wellness, wellbeing, and that as well is going to help overall cognition, physical function.

- So here's something that I want to know.

When a patient is first diagnosed with Alzheimer's, what advice do you have for the patient, for their family members?

What services?

What should they seek out first?

- So, I love that question because you included families, because Alzheimer's disease is not a singular disease about a patient.

You're treating, as the physician, the patient and the family.

And the advice I give is that Alzheimer's disease, it's a very slowly progressing disease.

Certainly, there are exceptions where you have patientspect that we always address in terms of that initial assessment when we diagnose dementia.

We also want to address advanced directives, because certainly if a patient is going to lose the ability to focus neurocognitively appropriately, you want to make sure that things are in place if decisions, very important decisions are needed to be made.

And our social worker really is an important part of that process where we diagnose the disease, so that we do it as a team.

It's a team approach.

And that's what's I tell my patients.

They're never alone, because we have to do this together as a team because it's a very, very stressful disease for the patient and the family.

So we can discuss medical therapies, but we discuss lifestyle and behaviors and that long term goal where and how we'll proceed.

- And I love ending on that note, because most things that we do in life, we do together as a team.

Dr Roopa, it's been a pleasure.

Thank you again for joining us today.

- No problem.

Thank you for the opportunity again.

- Our next guest is Kelly Butsack, an associate director from the Delaware chapter of the Alzheimer's Association.

Thanks for joining us today, Kelly.

- Thank you, Genesis, for having me.

- Let's jump in.

Talk to us about the Alzheimer's Association.

- The Alzheimer's Association is a national nonprofit organization, and our Delaware Valley chapter is the regional arm of the national association.

And our Delaware Valley chapter, which is headquartered in Philadelphia, serves the entire southeast Pennsylvania region, including the Lehigh Valley, Brooks County, Chester, Delaware, Montgomery, all counties in Bucks, including through Philadelphia.

- So what are you charged with doing?

What's your mission and vision?

- Well, our mission is to eliminate Alzheimer's disease through the advancement of research, to provide and enhance care for all affected, not only individuals who are diagnosed but their family and professional caregivers, and to reduce the risk of dementia through the promotion of brain health.

And our vision, our overarching vision is to realize a world without Alzheimer's disease.

- Now, that's a big vision.

So to carry that out, what services do you provide for family, friends, caregivers, people going through Alzheimer's?

- Well, our organization is twofold.

On one hand, in our local communities all across the country, we provide many programs and services to support individuals and families, and not just with Alzheimer's disease, but with other forms of dementia as well.

Probably our most important service that we provide is a toll free 24/7 helpline number.

And that helpline is manned by master's level clinicians.

24 hours a day, seven days a week, 365 days a year.

So it doesn't matter if someone needs us during the day, normal business hours, or if they need to reach us in the evening or on a weekend or on a holiday.

That 24/7 helpline is available to everyone all the time round the clock and it's also available in over 200 different languages and dialects.

So anyone, no matter what their native language, if they call for help and support, they can also request translation services as well.

Some of the other key services that we provide in our communities is, first of all, education, because a lot of individuals, many individuals across the country, are not really well versed in dementia.

And many caregivers out there who are trying to support their loved ones with a diagnosis also really need help with understanding the disease, the stages and what's to come on the journey so that they can plan ahead and help their loved ones in the best way they can.

And we also have throughout the region a system of caregiver support groups that meet monthly, some of them meet even more frequently than that.

But most of them meet monthly, and they provide an opportunity for caregivers to have a safe space to vent and to share and to learn about caregiving and also to give and receive support from each other as caregivers.

And support groups also help to decrease that feeling of isolation - to know that there's others out there who are dealing with this and on the same journey.

- Caregiver support groups are so important.

I know in my conversations with people who I've spoken to who have a loved one who has Alzheimer's, I mean, just that time that you need to decompress everything that's happening...

It's a disease that takes a toll not only on the person who's going through it, but on the caregiver themselves.

I mean, how significant, how important is it for you guys to offer that service for your clients?

- It's very important.

And we have throughout our chapter region over 100 caregiver support groups that meet in different places.

Right now.

unfortunately, since last March, during Covid, a lot of our support groups are meeting virtually online because of the pandemic guidelines and social distancing.

But we hope someday soon, this year in 2021, that we'll be able to return to in-person programing and have people be able to gather again and get that face-to-face support.

- Now, I know that you have a goal here.

You're working towards a town hall targeted towards the Latino community.

Can you tell me a little bit more about that?

- Yes, we've been doing what we call community forums now for the past year or two.

And it's really, for us, it's multifaceted.

So it's meant to be a form of community-needs assessment.

And it's also an opportunity for us to listen and learn from members of the community and from those who are impacted by the disease, particularly individuals who are diagnosed, their family caregivers, as well as professionals in the community who are trying to support and provide services for those individuals.

And when we have these town halls, it's our opportunity to hear from the community of what their needs are, what challenges they are facing so that we can try to support them and try to alleviate some of those challenges.

You know, what can we do?

What is the awareness level of the association?

Do they know we are in their community for them and have programs and services for them?

So we accomplish a lot in those programs.

- What is the prevalence, you know, in your research - I'm not sure if you have any stats to share with us - but how does this disease affect the Hispanic and Latino community?

What are some disparities?

- Well, unfortunately, there are a lot of disparities in the disease statistics, with some of the more diverse ethnic groups in our communities.

And Latinos are 50% more likely than non-Latino whites to develop Alzheimer's disease later in life.

And yet, because of the health disparities and other social determinants and costs to care and health literacy, all those things, even language barriers, the Latino population is also less likely than non-Latino whites to pursue treatment for the disease or resources and support for the disease.

So, part of the community forum that we're planning that you mentioned is to also find out how those disparities are affecting our local community here and how we can make a difference in helping to educate and helping to connect the community to those resources that are needed.

- Let me ask you this.

We're running out of time, but I do want to end on this.

How can people get involved?

How can they support your organization?

- There's many different ways.

First and foremost, we would like them to simply reach out and connect with us, whether they want to financially support the organization, whether they want to get involved maybe from a volunteer standpoint to help us expand outreach n their community, or whether they just need education and support because they're on the journey with a loved one.

We really hope that they will just reach out and make that connection, and then we can work with them going forward.

And there's a number of ways that they can connect with us.

As I mentioned earlier, the toll free 800 number is the quickest, easiest way, the most accessible way.

That number is 800 272 3900 And that's a 24/7 number that they can call any time.

We also have a lot of tools and information, education, a lot of services through our website, and our website is alz.org.

We also, for the Hispanic and Latino community, our entire website is translated in Spanish.

So if they type in alz.org/espanol, they can view our entire website and all the tools and information there in Spanish language.

- Well, that is much appreciated, Kelly.

Just the fact that you have a Spanish language website I know goes a long way.

Thanks again for being with us today and sharing your insight with us.

I appreciate your time.

- Thank you so much, Genesis.

It's been my pleasure.

- Our next guest is Iris Martinez.

Her father suffers from Alzheimer's and he's now currently residing in a nursing home.

Thanks for joining us today, Iris.

- All right.

Thanks for having me.

- Your father, Santos, has been living with Alzheimer's.

Why don't we start here?

Can you share what it was like finding out and him being diagnosed with Alzheimer's?

- We noticed there was something different about my dad I would say probably.

about five, six years ago, My dad was very regimented on paying his bills on time, his credit card or whatever bills he had, And I had noticed that he didn't pay them.

I was looking at the statement and he didn't have like maybe the month before paid, so he went to a neurologist.

And then the neurologist had suggested he go to a geriatric doctor that specializes in giving different assessments and testing, and then gave the results back to the neurologist, and that's when they diagnosed him with dementia as what he has.

So it was just a different pattern.

He wasn't driving as much.

My father always was very independent, so him not wanting to drive was kind of different also, because he always drove everywhere.

He wasn't going to the Puerto Rican club as much.

If you know my father you'd know he was at the club when the club was open, whether it was setting up tables or helping in the kitchen.

He also ran a softball league in Bethlehem.

So just little different things.

Not little.

I mean, they were big because they were noticeable.

That's what led us to believe that there was something going on.

- Alzheimer's can be an emotionally and physically taxing disease, not just for the person, but for the family.

So what was it like coping with him while he was going through this in its earliest stages?

- In the beginning, there was a lot of repetition, a lot of reminding, a lot of don't forget to take your meds, don't forget you have an appointment on this day, I'll pick you up at this time.

Like I said, my father was very independent before, so me having to now parent him was different.

You know, he didn't remember.

His short term memory wasn't well at all.

He was sleeping more.

So it was like I felt almost like he was just sleeping his days away, where before he would get up very early, you know, get things done, you know, he would... Before, you know, on weekends, he would go to the park, clean the park up and get ready for the baseball for the day, whereas later on it was like he would sleep to 11, 12.

And my dad used to up at seven in the morning.

It was hard seeing him in that condition.

It's hard knowing that there's something different about your parent.

- Now, you know, I hear a lot from friends and family members who say, you know, I feel like there's something going on with my parent that might be Alzheimer's or dementia, but it's hard either for them to get the parent to seek help or to just do what they have to do in order to take that next step.

So what advice do you have for those people who are currently finding themselves as a support person for their family member who are going through that?

- I would say, you know, to kindly talk to your family member about the observations that you see, because a lot of times parents, they're in denial.

You know, they're getting older.

They don't want to admit that they're either forgetting things or their cognition is a little slower than it used to be.

You want to kindly talk to your parent or loved one and express your concern and then suggest going to the PCP, because the first step is the PCP and then the PCP will refer the family member to neurology.

it's just how you say things to them.

Because, remember, most of these individuals are very independent and set in their ways.

And for someone to notice that things are changing due to cognition and then them getting older, it's like, you know, it's denial in the beginning for the family member suffering through that.

- You know, Alzheimer's is a disease we've been talking about.

It requires specialized care.

But talk about a cultural difference, you know, especially for us in our Latino community when we're talking about, for example, putting your parents in a nursing home... You know, I know in conversations with my parents, my dad will say, do not put me in a nursing home, no matter what.

But you come here to the United States and it's actually a good thing, you know, because, you know, we as kids don't really have the skills necessary to take care of our parents.

I mean, how do we come past that?

- I think our generation, we come from workers, I mean, our parents were workers, you know, my parents were workers.

My mom took care of her mom until the very last minute, until they put her in a nursing home because they couldn't physically maneuver her any more.

And in the home, you don't have, a lift and those things that they have in a nursing home.

But I think that, you know, our generation just needs to realize and understand, like, it's expensive to hire someone to be in your home 24/7 for your loved one.

And no insurance is going to provide that service in a home for 24 hours of the day.

When things get bad and you notice that you no longer can physically take care of your family member, that, for me, that was like our decision, you know, that's what triggered us to do what we did because physically we couldn't take care of him any more.

How?

I work full time.

My mom is retired, but she's she has her own physical ailments.

My sister works full time.

We weren't going to be able to afford someone to come into the home and pay them cash weekly to take care of my dad for 16 hours a day.

You know, the nursing home that he's at provides very good care, you know, and as a family, we make sure that we are attentive to him in the nursing home so that they know that he's loved and cared for and to give them that, like, you know, well, watch my dad - not watch him more than you would watch somebody else, but know that he has a family that very attentive to him.

- Those are all really good points.

And of course, at the end of the day, every family is going to do what's best for their loved one.

You know, sharing your family's story in general, you know, about health is an intimate you know, encounter.

So I really appreciate you sharing your story with us and being an advocate and helping others who are going through this situation get through this as well.

- No problem.

No problem.

How did we learn?

You know, we had to ask.

We got help from other people.

So it's always good to give back because everybody needs help.

We're in it together.

- Thanks, Iris.

I want to thank our St Luke's University Health Network expert, Dr Roopa, and our other guests, Kelly Butsack and Iris Martinez, for being with us today.

And thank you for tuning in.

We look forward to seeing you again soon.

If there is a medical subject you'd like for us to cover, send me a message on social media.

You can find me on Facebook and Instagram.

Plus, you can tune in to hear more of my reporting on 91.3 FM, WRVA News, your local news source for NPR all day every day.

I'm Genesis Ortega, and from all of us here at Lehigh Valley Public Media, stay safe, be healthy, and cheers to your health.