Welcome back to Family Health Matters.

I’m Shelley Irwin with me today, Lois Thomas, Dementia specialist with the Dementia Institute, and Claire Fisher, programs Services Director for the Alzheimer’s Association, as I always say, I only get the best challenging, but I fruitful occupation you have both chose.

And how do you spend your day, Claire Fisher?

Yes, I spend my day on out in the community working with community partners, providing education, working with volunteers and support groups, and you name it way I can be out there to provide that support and let folks know where we’re around and that we offer these free programs and services, that’s always my goal.

Free, important Alzheimer’s Association, West Michigan, so we do have a niche We do we’re a statewide chapter, but we are West Michigan office.

We have Muskegon, Grand Rapids, Kalamazoo.

Those are what I cover in terms of our specific offices in Grand Rapids proper here off of Cascade East stuff.

Paris.

Lois, tell us about your great institute.

Yes, so we’re offering lots of great services where offer a dementia simulation.

We offer a evening star worship program.

We offer consultations, we offer family caregiver classes.

We offer certifications for healthcare professionals accreditations for organizizations, and are offering some great programs for free services as well.

Introducing you as a dementia Institute.

Are you a freestanding building, where you invite the community to come?

We We’re located inside Holland Holmes’s corporate office, but it is a freestanding building, and yes, the public can come.

Yes, we’ll talk about that simulation, which I went through.

Let’s do some terms.

Dementia versus Alzheimer’s.

I’ll start with you, Claire.

Yes, as a visual learner, I always think of dementia as the umbrella term.

And under that umbrella is Alzheimer’s, which is the most prevalent form of dementia.

And then many other kinds, I’m sure, vascular, you’ve heard of Louis Body, etc., etc.

So that’s kind of how we differentiate the two, the umbrella Alzimer’s.

Yes, expand on that moment.. Yeah, many folks don’t actually know that there’s over 120 different types of dementia.

So, yeah, as Claire mentioned, Alzheimer’s is the most prevalent.

Vascular is kind of a close second, Lewy body’s third, but there are various other types that are associated with certain brain injuries, and certain medical conditions have their own type of dementia that can be developed as well.

Aren’t we in a public health crisis with this topic, Lois?

Yeah, absolutely.

If you look at the statistics being, you know, so many unpaid caregivers, family members who are caring for their loved ones and the shortage of healthcare providers, it does create a healthcare crisis.

Claire?

Yeah, absolutely.

You know, we think about that currently there’s, you, 7 million people living with Alzheimer’s or Dementia.

They’re about in the U.S. It’s going to double, nearly double by 2050.

So that shows us that we need all hands on deck here.

We don’t have enough direct care workers.

We don’t have enough neurologists, you know, all these things.

So this is saying why our missions are so important to get the word out to advocate because we’re going to need all hands on deck.

Why are we anticipating a growth in numbers, Claire?

And that can be for many reasons.

We’re all living longer, and we know that age is the highest risk factor for Alzheimer’s or dementia, so that’s one of perhaps many different environmental, you, factors and beyond that.

So as we live longer, you know, age being the highest risk factor, we do see that that is expanding in that sense.

I’ll stay on the topic of Alzheimer’s.

Perhaps maybe we should be using the word dementia, but is Alzheimer’s a normal goal of aging?

I mean, are we all going to somehow, be diagnosed with this?

Dispel that myth?

Yeah, dementia is not a part of the normal aging process.

There’s two parts of the brain that are being affected, and that changes the ability to function day to day to make decisions, to think logically to process information, to handle visual spatial relationships, a lot of different factors, but it is not a normal part of aging.

And staying on the medical diagnosis, are we seeing more early diagnosis?

That’s our goal.. What we’re trying to do, and that’s part of why Claire and I collaborate so well together is because we want to help people push past that stigma, that there’s, you having a neurocognitive disorder is a medical condition.

And though there may not be a cure, there are things we can do to help, improve that quality of life.

So our goal is absolutely early diagnosis.. Yeah, absolutelyolutely.

I totally with you 100%, Lois.

Like, you know, as far as it goes, that early, the earlier, the better, the earlier, the better, in that you can, you know, find support for you as a caregiver, let’s say, finding treatment paths, maybe linking to clinical trials, maybe just understandinging what to expect and to be able to prepare the more time the better And so we definitely are always pushing that early diagnosis, but we are pushing through that stigma, and it brings with it a lot of feeling.. And so it’s understandable, but our goal is to educate and get the word out.

Are we?

Absolutely.

I’m sorry.

Yeah, and part of that education process is how to live well while you are on that journey.

Yes.

Are we showing signs and symptoms earlier in age, Claire?

Yeah, you, we know for sure that we have early onsset as far as the exact statistic.

I would have to get you the exact number there, but we do know that the younger onset early onset is occurring, and it’s something that we are fully support at the Alzheimer’s Association in terms of support group for early stage folks.

We have an early stage social engagement program at the AllAzheimer’s Association.

Our goal is to be there for the caregivers and the folks in the early stage.

All right, still staying with some basic slowest.

I’ve forgotten my keys.

I can’t remember your name that I just met.

What are the true signs and symptoms that one may need intervention?

We all have moments when I put my keys down.

Okay, I had that in my hand a minute ago.

Where did it go?

Or forgetting names.

And we can stop and take a moment and go, okay, I had it a moment ago when I was doing this, and I can cue myself to discover where I left my keys.

Or I can think about, I know I met that person, where did I meet that person?

Where do I know her from and start going through, you know, all the places that I could have met this person to come up with that person’s name.

So I can cue myself in a normal aging when I have those moments where I forget, you take me a little bit to do so, but I can do so.

When I have two parts of my brain being affected by the course of dementia, I can’t logically work through that process all of the time like I can with a healthy brain.

Yeah, Claire?

Absolutely.

I think that as far as it goes you know, we were referring to, well, you re-asked the question I apologize.

I’m having of.

Yeah, look, I can’t find my keys.

Oh, yes, I was having the moment.

last name?

I just articulated that, that we as, you know, normal part of aging just to back up at Lewis.

See, I just gave an example is where we do we might have, I’ve literally forgotten my keys and they’re in my hands.

You know, these kinds of things.. the phone.

The phone.

Forgetting to pay a bill, these kinds of normal things.

But we always state that it is not a normal part of aging.

It is in fact, a progressive brain disease.

And so with that, getting that treatment, getting that support, getting that, you know, resources are so important.

So mamma seeing changes in dad.

The kids are seeing changes in dad.

What’s the next the first step, I should say?

I’ll start with you, Lois.

Yeah, so there’s lots of things that we can do.

We often offer free screenings to help determine if At theit at the institute, yes.

We offer a MA screen, which will help determine could these be, potentially signs of early dimension, give you all the paperwork you need to take to follow up with your physician?

And we offer classes on how to I identify.

We offer support groups as does Claire.

We offer, you know, even just a one on one consultation.

I’m not sure.

Is this what I’m seeing?

know, how do I where do I go?

And even I do go to my physician.

Sometimes I don’t get all of my questions answered, you know, in a 20 minute doctor’s visit.

So we can help answer those questions.

How to navigate what to do next.

How does the association know?

Yeah, I concur.

We definitely, you know, our whole goal is, and something that I see all the time is people calling me who say, okay, my doctor believes that my, you, loved one or myself that I have, signs or symptoms of Alzheimer’s and dementia, then get the diagnosis and then not know what to do at all after that, not given any direction, whether to the Dementia Institute or Alzheimer’s Association.

So our goal is to really be there for folks, to be that bridge, because how emotional is that that’s like you’re given this diagnosis and then no further information after that.

So our goal is to be that bridge and to say, hey, we are here to support you.

We’re here to help you navigate.

We’re here to support the caregivers, etcera.

So our goal is to be that bridge, so to speak.

Absolutely.

Lois, how much should the one experiencing changes be involved in treatment, planning, future?

Oh, absolutely.

all of us need community.

We need support.

We need acknowledgement of what’s happening in our lives.

And so we like to refer to their family and loved ones as care partners.

Yes.

I’ partnering with you to navigate your world to help make your life better.

So it is crucial that someone has a loved one, a family member, a friend, whoever is willing to walk side by side and help out when they can.

And oftentimes it isn’t just one person And frequently, that’s in all the better situations, is having multiple people.

So everyone can understand how to support and provide that guidance for when I’m not having the best day or when I’m having moments where I’m not thinking quite as clearly, having someone there to help say, yeah, let’s take a break for a second.

That’s important."

And I’m sure Claire, caring for the caregiver is important with your association.

Huge.

You know, one of our most successful programs is our support groups and Lois being an Alzheimer’s Association, our statewide virtual support group facilitator, offering just such an amazing service to caregivers who are going through this, meeting other caregivers who are also going through, and also being facilitated by someone who is an expert and knows, has been through this and knows what’s going on.

A huge part of caring for the caregiver, I feel like if I I can depart one, you know, bit of information, I would say, connect with the caregiver support groups, you know, because caring for the caregiver is of the utmost importance because we have seen where the caregiver can go before the loved one living with dementia.

You know, that can happen.

So it’s of the utmost importance that both folks are, you know, the person living with dementia and the caregiver are equally getting attention and taken care of.

Yeah, and being able to provide that support and knowing that I’m not alone and is so important and being able to figure out how to take care of yourself when that’s a demanding role.

And the reality which you alluded to is that perhaps I’m not going to get better.

I may, will get worse, and then the journey, how do you prepare for that journey, I imagine, as part of the education.

Absolutely.

The education, the Dementia Institute, the simulation that I know I experienced, and I would recommend everyone experienced, because you’re simulating what I’m experiencing at a certain stage.

Can you talk about this?

Yeah, so it’s an experience and empathy that’s designed to alter your senses, which is what happens with someone living with dementia They start to have changes in sight and their processing of sounds and processing of sensations.

So it’s a 45 minute experience.

We give you items to put on to alter your senses give you a few tasks complete.

So you get a feel of what it’s like to live in those shoes for a few minutes to help help you really understand why you’re seeing what you’re seeing, what that’s like.

One of the uniqueness was when you had I put headphones on, and it sounded like there were cars honkking in the background and muffled noises.

This, too, is experienced by particular patients?

Yes.

So, you know, if you think about any time you’re in your environment, you have all these environmental noises around you.

But with our healthy brains, we can strip those away and tune out those background noises, the honkying cars on the street or, you know, noises of the ventilation system, those types of things.

So we can focus on each other’s conversation And someone living with dementia who’s experiencing sensory challenges can’t do that as easily, and so it gets to be quite overwhelming.

More on my list, but I want to get into some events that you both have because A, you need to raise funds, you need to raise friends and more.

Claire, what do you have for us?

Yeah, coming on up, actually, this Tuesday on April 15th, we have the Spanish speakingingearch Night.

That is virtual.

It’s going to be available.

So if you are interested, please look it up on ALZ.org slash GMC So that’s going to be a great event.

We also have our advocacy Day, statewide Advocacy Day, where we all go down to Lansing and really speak up for, you know, on behalf of folks living with Alzheimer’s in a Dension and talk to our representatives.

That’s on the 22nd of April April.

And so we’re, again, just appreciate you letting us kind of get the word out on that.

Yeah, well, twist my arm.

There we are.

Lewis, what’s happening to the Institute upcoming?

Yes, we have a navigating dimension day with the experts conference coming up on May9.

It’ll be at Calvin University.

And the great thing about this, conference is it’s for people living with dementia.

It’s for unpaid caregivers.

And a caregiver doesn’t necessarily have to mean somebody that’s provided.

physical care each day.

Maybe it’s somebody who just checks in on mom once a week and helps make sure that, you know, the bills are paid.

It’s for paid professional care caregivers.

And we’re also offering, you CEUs for those professional caregivers.

So it’s going to be a really cool event.

We’ve got speakers coming from Dr. David Morgan and Dr. Irving Vega coming from MSU.

We’ve got deep of Snow coming in the evening and we’re offering a free session in the evening as well.

So if someone can’t go, the one to 830 event, they want to just attend the free session in the evening, they’re more than welcome to do that.

And that provides a dinner as well.

So it’s going to be a pretty cool event.

We’re very excited about it.

And the National Council of Dementia Mindines will be there as well.

Wow.

It’s good to see oriented.

When do you know that it’s time time to ask for help, i.e., Mom needs more help than I can provide, Lois?

Yeah, that’s always a very tricky and a very unique question for folks.

And oftentimes it depends a lot on what you’re seeing your loved one is doing, how you feel they’re managing saf safely on their own, and how much are they getting socialization and engagement with other people?

Because as those brain changes happen I tend to withdraw a little bit more within myself.

And the more that I withdraw within myself, the less able I’m going to be to function overall.

And so witnessing those things and kind of determine your own stress level in this, you know, I myself have other things I’m doing in my life, so I need to, you know, manage how much care I can actually provide And so we recommend talking with someone as a part of support groups and a part of those classes reaching out to professionals and helping them figure out when is the right time.

And the best time is to prepare long before you need to do that Start thinking about that ahead of time before you’re into a point where it’s perhaps a crisis situation or you are overwhelmed or something drastic happens, and that’s not the time to have to now make a decision.

Claire, I trust the Association helps with those questions.

100%, and and we do get those questions all the time again.

Always recommend to check out our education programming, check out out those support groups, as Lois said, but also to reach out to our 800 number, it’s 247.

You can call if you have a question at two in the morning.

I always say that’s just keeping you up.

We are it’s, again, free of charge, 24-7.

I say, that’s a great number to call just off the bat.

And also talking to your healthcare provider.

So if you’re noticing some things, you know, or in your loved one or in yourself, talking to your healthcare provider, and then you know, getting connected to resources.

And as you go through the journey prior to any of the next step, continue a lifestyle that perhaps involves exercise 90% good eating.

Yeah, always have to leave room for the nachos.

You.

And more’ll start with you?

As far as that goes, we kind of think of it as I think of it as four pieces of a pie to risk reduction or healthy living for the brain and body, and that is nutrition, as you said, exercise.

It’s also being within community, social connections.

That’s as important as eating healthy, as well as challenging your brain.

So those are kind of the four pieces of the pie, I think of, that we can control, that we have some ability to make a difference with.

Lois, is there a sleep recommendation of?

I know sleep is a good foundation for all of us.

I would think in this population, you don’t want too much, but you want your sleep?

Well, in trying to prevent you want to make sure you you’re trying to get at least seven to eight hours of sleep every night, which I think is a challenge for most of society right now And it’s also making sure you’re building an appropriate hydration too.

Hydration is oftentimes overlooked in For all of us, but especially those.

Yeah, especially because as my brain changes, I don’t recognize that I’m not drinking.

And so making sure I’m getting those things.

And you’re right.

Too much sleep can affect too much sleep during the day can affect how well I sleep at night.

So it’s that’s where that social recommendation that Claire mentioned and I mentioned earlier, it’s having enough engagement throughout the day to stimulate my brain so then I can sleep well at night.

And so it’s kind of a combination of the two.

Definitely.

Yeah, I I totally agree.

I think that that that is so important.

As we know, sleep is a way to reduce risk is getting those seven to eight hours.

And so if you can, if you’re having sleep issues, again, two talking to your medical professional, because we know it’s as important as what we eat and are exercise and all that good stuff.

And one of the things that we focus on, as part of our classes is how to provide that engagement, because as I withdraw it within myself, it takes a certain level of skill and creativity to be able to help me come out of myself and engage in the world.

And so we focus a lot on those classes as well.

Getting dressed.

Getting out of jammies, which, you know Who wants to do that?

Everybody’s been having those challenges post COVID.

Let’s talk prevention.

Elephant in the room.

How about the crossword puzzle?

Does it work?

It does.

Anything that challenges the brain is always a good thing.

Learning something new, that is important.

So it’s not.

crossword puzzles are great, but if that’s the only thing.

I’d rather do find a word.

Yeah.

But it’s more about learning something new, challenging your brain, not doing the same old, same old that you’ve always done is really important.

Because physiologically, are we rewiring?

I don’t want to go through deep here, but are my connections working?

Yeah, exactly.

You’re challenging the creation of new.

synapses.

And so that’s what you want to be able to do is get your brain functioning and keep it functioning.

And folks living with dementia can still learn.

It takes a little bit more, but they can.

And so it’s just finding those creative things that you’re interested in and just challenging yourself yourself to learn something new.

Definitely.

Yeah, and I think that, too, you know, rather than using the word prevention, we use risk reduction because, you know, it does definitely that there are sort many things.

And as Lois mentioned, as you mentioned, that crossword, that find a word, what have you.

Those are all excellent things, and they’re within our control.

And we know that there’s scientific evidence that’s proven that it is helpful in reducing risk.

So that’s kind of how I frame it in my mind.. And again, not to put you on the spot, but research, I trust, is being done daily to see if cures can be presented, Claire?

Absolutely.

Yeah.

We are just, I’m very hopeful to see all of the amazing, you know, research and support that is being given.

We’re the largest, not-forprofit fundraiser for Alzheimer’s in the nation, in the world, I should say, and we with that, we are working with lots of different universities, and there’s lots of amazing research going on that are, again, we’re kicking the can down the road and it’s only getting better and better.

So I just, I think there’s a lot of hope to be had in the next five to ten years that we do have many different wonderful treatments coming down the pipeline, not soon enough but we’re moving in a great direction.. And in addition to that, there’s some great things in the pipeline, even diagnostically, Totally.

trying to establish a blood test to be able to help determine rather than, you know, the costly and rather challenging scans that are currently necessary.

So it’s pretty exciting, exciting things coming down.

Good.

Well and both of you certainly involved with that.

Dementia Institute, when do I reach out to you and tell me a little bit more about how The earlier, the better., as Claire said.

So as soon as you think you might be experiencing this with the loved one or you yourself might be experiencing it or But I’ve also had people who have been on the journey for, you know, eight years come to us and get support and get classes and say, you know, I’ve been doing this for a while.

And I thought I knew what I needed to know, but I’ve learned a few tips and tricks to help me to get through my days.

So whenever you listen listening to this or seeing this, that’s the time.

And the best way to do so is our website, which is www.dementia-initute org.

That’s www.dementia- institute.org or simply call us on the phone.

Yes.

And the Dementia simulation that’s available to whomeever is interested, whoever would like to go through the experience, yes.

And they can sign up for that on the website as well.

or they can call us.

Right.

Claire, what’s the first step to get involved with the association?

Absolutely.

Again, if you’re local to us, stop on by the office.

We can always say set up a time to chat.

Again, our 800 numbers, a great 1-800-272-3900.

I was going to see if I got that right.

And as well as our website, az.org slash gmC, and that stands for greater Michigan chapter.

And that’ll give you the connections to all the education support groups, etc., that be have going.

And Lois, how important is it to for one who is obviously needing help to reach out to your institute, but also to reach out to the association?

You’re all working in the same sandbox, correct?

Yeah, as we said earlier, you know, Claire and I do collaborate.

We do offer some unique services, separate from each other, some right in line with each other.

But we do you know, then there’s a variety of support groups out there, different offerings at different times.

So sometimes it’s a matter of what schedule works for you.

We offer a pretty cool spirituality program called Evening Star, which helps we’ve written the second handbook for, it’s a handbook for providing a worship service, and that can be done in a facility.

It can be done in a hospital.

It can be done in a church or one and one at home with mom or dad.

And you pick up this book.

It’s a beautiful color addition, and that’s available on our website because oftentimes folks can’t get to church anymore.

And so still crave that experience and can do so easily with mom.

So all follow step-by-step instructions.

It’s a journey, and you certainly both here for that.

Your final comment?

Yeah, I just as far as it goes, I’m it’s again, always wonderful to be able to be here with you today and just to support to the Dementia Institute and the Alzheimer’s.

We’re all kicking the can down the road and we’re all here to help.

And so I think that that’s such an important part of the collaboration, but just pleased to be here today.

That would be kind of a cool exercise cake the can.

I don’t know if that’s the same.

I’ that in that place seriously.

Thank you very much for you both and obviously, for our viewers.

Thank you, as always.

Take care.

Thank you.