(upbeat energetic music) - And welcome back to "Family Health Matters."

I'm Shelley Irwin.

With me today is Claire Fisher, program services director with the Alzheimer's Association.

Rosemary Apol-Hoezee, director of Quality Education at Holland Home.

And Ray Huckleberry, a caregiver.

So here we go.

Question I always ask, let's get the credibility out of the way.

Rosemary, how are you involved with brain health?

- So I'm the director of Quality and Education at Holland Home, and we do a lot of the dementia education for our caregivers.

We teach them the appropriate techniques, approaches to use with people living with dementia.

And then we also do a lot of education with our residents, especially our residents living in independent living who often want to know more about this subject and about are there ways to prevent or slow down the pro progression of dementia.

- We'll get to that.

That is for sure.

Ray Huckleberry.

Talk about your mom.

- Yeah, I'm the primary caregiver, my wife and I for my mother who has dementia and we moved her into our home this last winter to take care of her.

- Yes how long have you been caring?

- Well, since any of the symptoms showed up, maybe four or five years ago.

You know, in the beginning just thinking it was getting older and a little forgetfulness and then reaching a point where it was just obvious there was something more than just normal forgetfulness.

- Yes we'll talk about that.

Claire Fisher, tell us about your association.

- You bet.

I'm the program services director for the west region of the Alzheimer's Association.

So oversee anything and everything, our support groups, education programs, early stage social engagement, and much more.

So happy to be here.

- Yes Rosemary, put your RN hat on.

There was a reason you took a lot of science and more, we are talking brain health, but yet Alzheimer's, dementia, those terms are important.

Can you do some education for us?

- Yeah so lots of times people think that Alzheimer's and dementia are one and the same.

And in fact, we like to talk about dementia as being kind of an umbrella of symptoms.

And underneath that umbrella there are lots of different types of dementia.

So Alzheimer's is a type of dementia.

It happens to be one of the most common, about 65 to 85% of all dementias are Alzheimer.

But there are a number, in fact upwards of about 120 different types of dementia that fall underneath that big umbrella.

- Let's address me as a fifth grader, what is happening in my brain?

- So people tend also tend to equate dementia with memory loss.

And although memory loss is often one of the first things we see, we know that dementia is actually brain failure.

That there are, not to get too scientific, but that there are areas of the brain that just are no longer functioning the way that they used to and that it's a progressive disease and that brain will continue to fail.

- Yes and lemme just dispel a myth very quickly.

We will not all get dementia.

- That is very true.

We will not all get dementia.

And there's a big distinction between normal aging and not normal aging.

So sometimes people think, oh, I can't remember the name of that woman I saw in the hall.

Normal aging, not necessarily a sign of dementia.

- Thank you for that, Claire.

Let's bring in the work of the association, if you would.

- Yeah that would be great.

Yes so as far as it goes with the association, our whole goal is to you get a diagnosis.

We were talking about this in the green room.

You get an Alzheimer's or a dementia diagnosis and then it's like, okay there you go.

So the association, I think of us as a kind of a bridge in that experience of, okay, you get the diagnosis, but you're gonna need support, guidance and that's I think our whole goal here in what we do.

And so that guidance and that support can be through our wonderful caregiver support groups, which Rosemary is one of our longtime support group facilitators does an amazing job and education and so on and so forth.

- Nice.

It seems like we're talking more about it, but yet how are the numbers?

I don't need specifics, but are we treating more Alzheimer's and dementia?

- There has been an increase and there will be even more.

I think it's something, I may be getting the stats wrong, but three times as much by 2050.

So we're going, this is going to become more and more prevalent.

And so thus the having these programs, having these resources are gonna be so much more that much more important, I should say.

- 2050 I'm doing the math.

I better work on my preventative strategies now.

I'm hoping.

(overlapping chatter) - Which we'll talk to, oh Ray, bring us back to your mom.

And perhaps those early symptoms.

- Right the early symptoms were just a lot of confusion.

I think when I really noticed the problem, she was in a bit of a car accident right by my house and it was dealing with the insurance afterwards.

And my mom had been a single mom my whole life and just handled everything.

And all of a sudden just setting up these simple appointments after the accident to go get the car was just exceedingly difficult.

And I dismissed them at the time, just that she was rattled by it.

And it really took, I had a friend of mine go over to her house to do some work and he called me and he said, Ray, something seemed extra off.

I hate to bring it up.

And I still wanted to dismiss it.

I got a call from the vet one day and she goes, "Ray, I hope I'm not overstepping."

But she says, "Your mom brought her dog in today.

And I had a grandma with Alzheimer's, and I just think you should be aware that I noticed some signs."

And that's when it became obvious that we needed to do something and we went to the primary care physician and began.

- Yes may I ask what age she was at that early time?

- She's almost 88 now, so she'd have been like 82.

Somewhere in there.

- Rosemary expand on perhaps early signs and symptoms.

- So yeah, it sounds very like, you know, what your mom experienced is is not uncommon at all.

And again, lots of times we will see just some basic, some memory lapses, some difficulties with things.

I've, she always could do this really well and now she can't.

And lots of times an event, a situation, or a crisis, like a car accident will bring it on.

Or sometimes the death of a spouse and that spouse was covering for that person living with dementia for a long time and the spouse dies and it's all of a sudden, "Wow, mom really can't, mom can't make a meal for herself.

Mom really can't do the laundry anymore."

- At what point do we contact the association?

- Yes I think that sooner the better is our goal, you know, getting that early diagnosis so you have this, you know, time to plan, time to get that support.

The more support the better.

So I'd say asap.

- [Shelley] Yes what is the treatment?

- What is the treatment?

- Well, we know that currently there's not a cure for dementia.

We know that it is a progressive disease.

And again, that brain is gonna continue to fail.

Claire is absolutely right in that an early diagnosis is so important because that's when you can bring in those support systems.

If you are a caregiver, you can learn more about the disease and learn about ways to handle some of those difficult situations.

And that can be huge in terms of taking care of the caregiver, which is huge, but also taking care of the person living with dementia.

- Yeah, we'll certainly get into that.

So at what point did you bring mom into home and how was she responding with this?

- We brought her in this winter.

It became obvious that it needed to happen as we got into fall.

And we wanted to keep her in her house as long as we could.

She was close by.

So that was helpful.

But then it just became obvious when we were having trouble with basic appliances in the house, not able to turn things off.

You know, I knew that we we were dancing with the devil of waiting too long to where it was the stove and bacon grease on fire or something along those lines.

And basically by the time she moved in with us, pretty much the only kitchen appliance she's able to use.

And she still can use it a little bit is the toaster.

She can make her slice herself a slice of toast now.

- And did you work with the association at all?

- Yeah, they have been angels on my shoulder.

A social worker that that works there.

Carla has been just an unbelievable help for me because you leave the primary care provider with a prescription for a 30 year old medicine and a good luck, And that's all the more they were able to give us.

And I needed more than that to take care of mom.

And so I reached out to the association with a question and Carla called me back and said, "Hey I can be a..." She says, "I'll be your social worker to help you.

not your mom."

And I went, wow.

And it's just been fantastic.

She's a resource.

She knows where to, you know, send me articles on things or we're now making plans for that next step for mom when a memory care facility is gonna be necessary.

'Cause we're seeing signs that, that the beast this disease is is going to outstrip our ability to take care of her.

And she was able to hook me up with people to start that process.

- And you're here.

So who is with, does she need 100%?

- My wife is home with her right now.

- Okay.

So you have to work those logistics out.

- To a degree.

Right now, mom's still been okay.

Gone a few hours at work.

Again, I only work 10 minutes away, so I'm able to bop home, check in on her.

But those are the things we're seeing.

It's okay right now, but probably okay is all that it is.

And that's going to diminish as as time goes on.

- Thank you for that.

Rosemary, what point does a Holland home step in into play?

- Well, ideally when people come into our community, lots of times they'll come in into independent living and we want them to be informed about this.

We want them to know that we provide a continuum of care that we can help support them if they are maybe noticing some mild cognitive decline, maybe it isn't even, you know, a diagnosed dementia yet.

But again, making that contact sooner rather than later to give them the support, the education that they need.

- Yes Claire, back to your association and back to early stage, you have a whole early stage social environment stimulation - Yeah.

- Group or program.

- Yeah definitely.

So we have been meeting twice a month.

And actually that's overseen by the wonderful social worker that Ray mentioned, Carla Schmitz, shout out to her.

She does a wonderful job.

But yeah, so this early stage social engagement program is great in that you get to meet other folks going through the same thing.

But the goal is to have fun and also be able to connect with folks who are going through the same thing.

And so, again, that could be anything from going to Frederick Meyer Gardens or, you know, we had actually partnered with the Graham last year and did guided tours.

And so it's just a really... We try to bring the fun but also the support.

- Rosemary, let's talk about the caregiver.

And one of the offerings I know that you have for the caregiver or anyone interested is the dementia journey.

What is this?

- Yeah so this is kind of a virtual sort of experience.

We have all of our employees, regardless of where they work, come through that within the first 90 days of hire.

And then we also offer this to the wider community.

We like to call it an exercise in empathy.

We outfit people with some special goggles to kind of simulate the vision changes that occur with dementia.

We mess with their hearing, with their ability to use finger dexterity.

Again, trying to kind of simulate what it might be like to have dementia.

And then we put them into a room that's set up like a bedroom and we give them some very simple tasks to do, like fold the socks, put on the dark colored sweater.

And they do that while they have all of this gear on.

And then after that we debrief, we talk about, you know, what did that feel like?

What is, you know, what do you think going forward that you might be able to give more now to your people that you're caring for?

You know, what is this kind of, what kind of impact has this had on you?

- Yes thank you for that.

Ray, more about dealing with mom, you're in the middle of caregiving.

What's the good, the bad and/or the ugly.

- The good is getting a chance to maybe repay that parent back for what they did for you.

The bad is realizing that you're never gonna win against this beast.

That every time you get in front of it, it cuts you off.

And time and time again, my wife and I'll come up with a, ooh we can do this and it'll make this situation better for her.

And it does for a day, a week and then it's back to the drawing board again and again and again.

And I think it's hard as being the child and caregiver, it's not always an easy transition to accept that your parent doesn't know anything anymore.

That they don't understand things and it's easy to get frustrated.

It's always a struggle.

You have to work on that patience.

Because it doesn't come natural.

You're my mom, you know this, you've always done this.

Is the internal argument.

And I get frustrated inside with her.

And you do the best you can to make sure they don't know that.

But that's the hard part.

- Claire more on how the association is dealing with caregivers.

- Yeah I think that our goal is to again, answer any and all questions.

If we get a caregiver calling us, our goal is to connect them to our programs and services.

And again, that could be our dementia support program, that one-on-one support.

our support groups are so amazing.

And again, just such appreciation for our facilitators.

That's a way that we can again, you're meeting other caregivers who are going through it.

You learn so much and you have a place to vent and to know you're not alone.

There's other folks who are going against the beast, so to speak.

And I think that that's so important.

And also the education piece.

You know, again, each case of Alzheimer's or dementia is different and the path is different.

And so to arm yourself with knowledge and education and some guidance, I think that's our goal.

- How much talk Rosemary is given to Ray and his wife about respite care and/or education of how to deal with your own?

- Yeah, absolutely.

So at our facility, we do provide respite care.

I know in the support group that I facilitate for the Alzheimer's Association.

And I also do one internally for our organization.

We talk a lot with the caregivers about taking care of yourself.

'Cause we know that caregivers undergo exceedingly high stress rates.

They're predisposed to more physical illness because of that stress.

So really finding ways to take care of yourself and finding ways to maybe deal with, boy, I have to get my mom in the shower and she doesn't wanna take a shower.

And we can help with some of those very common scenarios that people encounter when they have a loved one living with dementia.

Here's a way you could maybe try to make it a little easier to get your mom in the shower or to help her.

Do her hygiene in the morning, things like that.

- Ray, was it hard for you to ask for help or what about the woman who is strong and yet knows she needs help as a caregiver?

- Yeah, it was difficult because I didn't know where to turn at first and doing some Googling.

Yep the Alzheimer's Association and then made that reach out.

'Cause I didn't know where else.

The primary care physician and no knock against them seemed ill equipped to help me with any more than just the basic, yes we're seeing signs of dementia.

- Hmm yes.

Rosemary, at what point will Ray need to ask for the next stage if that's applicable?

- Boy, that's a hard question to answer.

In my experience, I've typically seen that the loved one, whether it's a child or a spouse, waits too long to the point where they are so just exhausted and strung out.

I have a member in one of my support groups who recently put his loved one into memory care and he said to me, I feel horribly guilty about this as facilitators of that support group.

We really work to support that individual.

We know it's a really difficult decision, but we know that it's necessary at times.

- Yeah and Claire, you can help facilitate that next step, if applicable, through the association?

- Definitely.

You know, our whole goal too, if anyone calls and is kind of looking to that next step, we have a wonderful helpline and resources.

We actually have this website called, thecommunityresourcefinder.org.

And you can go in and you can, it gives just, you know, breakdown of assisted livings and we can, you know, really point you in the right direction.

- Yes yeah.

Talking about brain health, let's talk about perhaps prevention.

First of all, Ray, I keep using you as an example.

But should Ray, is this an indication that he may be susceptible?

- Not necessarily.

And Claire, you can, you may be a little more up on the research than I am, but I certainly there are... We know that there can be genetic links and we know that some types of dementia are more genetically linked than others.

But there's no ironclad sort of, "Well if my mom got it, I'm gonna get it."

- Yes.

So how do we in a perfect world, work on our prevention?

I'll start with you Rosemary.

- So initially prevention is a lot of common sense things.

I heard a speaker yesterday say, what's good for the body is good for the brain.

So regular exercise, eating well, avoiding highly processed foods.

Interestingly, air pollution in the last few years has become cited as a big risk factor.

And we know that, we've all seen that with the forest fires in Canada.

So a lot of those very common sense things, avoiding excessive alcohol consumption, not smoking, you know, keeping your blood pressure within the desired range, that sort of thing.

- How do you find your world with prevention?

- Yeah, I think that, you know, there's so many different ways, you know, to kind of move in the direction of risk reduction.

You know, I think Rosemary just made excellent points on, you know we always say heart health is brain health.

So vascular health, social support, mental stimulation, you know, whether that's Sudoku or doing the "New York Times" process.

- We'll bring you down the path of risk reduction.

- Ray, are you making any lifestyle changes?

- No, right now I'm really busy being dad and caretaker.

So I mean that's kind of one of the traits of a caretakers you kind of come last.

- Yes, yes.

Yeah which let's perhaps change that.

Could there be a way for Ray to take care of himself through this journey?

- So it might seem improbable given the stresses you're dealing with, but certainly getting enough rest is so huge.

- Sleep has been brought up as a possible, make sure you get your eight hours.

- Yeah absolutely.

And when Claire talks about socialization, that ability to kick back with a friend or go out for a beer.

Occasionally not too much.

- Yes, yes don't smoke.

- All right.

- Go down that path.

- Those social activities also are very restorative for our brains.

We really need that for good brain health.

- Yes.

Claire, I mean Alzheimer's association's strong in Michigan, but obviously if we live in other states, you're strong there as well.

And is fundraising important for your organization?

- Yes, yes.

So as you said, we have our Michigan chapter here, but that you can actually call our 800 number, get connected to any state in the United States.

So we are national in that sense.

And then your other question was, I'm so sorry you.

- Any other programs or services that I may not have asked about?

- Oh yes, yes.

You know what I would say, as far as it goes really a great, we have our alz.org/gmc and that actually gives lots of breakdown on resources and ways that you can be supported.

- Ray, you mentioned you as a dad, what are your kids' understanding of this phase of life?

- Well we have kids from seven to 20, so a pretty broad.

The older kids have learned to step up and be our backup.

That they're kind of our natural go-to if we just need a night away.

That at least then who's there for the night is familiar.

And that has been wonderful.

All the boys have stepped up and done that.

For the little ones, it's harder to understand, you know.

And so we kind of have a code in our house that if we give you the wink, just roll with whatever, you know, grandma's being a little silly right now.

Or it might not make sense but just roll with it if we give you the wink.

You know, 'cause they're little kids, they correct things now that they're learning in school and that type of thing.

You know, so that's been important to get them on board and help them to understand.

Grandma gets confused easy is how we talk to the little ones about it.

- Yeah.

As we wind down this very important conversation.

Just one more question and then I will ask you for your final comment, Rosemary research being done.

Will there be a cure before 2050?

- A lot of folks are saying that there will be and there is a lot of research being done, a lot of research being done actually here in Grand Rapids.

The translational neurosciences of MSU are doing a lot of research and I think there's a lot of hope out there that a cure will be found.

- Nice, absolutely.

I would find out more about Holland Home.

- Yeah, so you can go to our website, hollandhome.org and we do have a link on memory care services and not only what we offer in terms of residential services, but also, you know, how some really good resources for caring for a loved one who has dementia.

- And one can come in and ask for the dementia journey?

- Yes absolutely.

- Nice.

Claire, what do you leave us with?

And obviously how do we find out more about the association?

- You bet.

I would just say please do feel free to reach out to us directly.

We have our Grand Rapids office as well as many offices around the state of Michigan.

And please do just reach out to us.

We're here to help and support and you know, get you connected to resources.

And then I would also say if you, as you mentioned the research aspect of what's coming out and the exciting news and lots of progress in that way.

We actually just had our Alzheimer's Association international Conference, excuse me.

The AAIC and if you go on to alz.org/aaic it will tell you about all of the new research that's coming out.

Really exciting updates.

- [Shelley] What is that website again?

- It was alz.org/aaic.

Really great research.

- Will you also continue your walks for fund and friend raising throughout the year?

- A hundred percent.

That is the way that we can fund our programs and services and it's a great way to also get connected with other folks and who have a heart for the mission.

- Hmm.

Great.

I leave you a couple minutes to, I guess talk about that caregiver who is just now starting to experience this and or is continuing in the trenches.

What's your hope?

- That they reach out and get help.

I can't imagine doing this without backup, without that person that just knows more from being experienced in it.

To just be figuring this out day to day with just my existing knowledge base would've been insanely difficult.

So don't be afraid to ask for help.

There is just, it's there.

- Yes.

And back to back to you with another question, Rosemary, early intervention, the importance of when I first don't deny the first real sign.

I mean, we all misplaced our keys or can't remember your last name.

- Exactly.

- But get in there and ask for help.

- Yeah, absolutely.

You know, brain health and cognitive decline still have a huge stigma about them and that's part of the work that we do jointly, right Claire?

Is that breaking down that stigma so that people will say you know what, I think I might have a problem here or I'm noticing changes with mom and bringing it to the forefront so that you can get that intervention that you need.

- Yes, absolutely.

And I would say most if not all of your services are free and open to the public.

- Totally.

100% yep.

Free and open to everyone.

- Nice.

All right websites one more time.

- Hollandhome.org.

- Right.

And Alzheimer's.

- Alz.org.

- Alright, what you gonna do with mom this afternoon?

- This afternoon we probably will go check out her flowers.

We built her some flower boxes that are like waist height so she doesn't have to bend over 'cause she loves to garden and the flowers probably get watered four to eight times a day.

But it gives her something to do with a positive outlet.

And anybody that comes over to the house, it's the first spot she takes 'em to the back window to show 'em her flowers.

Yeah that's great.

- Yep.

And most of our evenings are going out to inspect the flowers and have her show us all the new blooms on 'em.

So that's the positive we try to work in.

Well again, we can expand on that, but I think we've nailed it.

Best flowers on the block.

- They are.

There is no, no doubt.

- Thank you very much for this conversation.

- Thank you.

- Thank you for watching.

Appreciate you.

Take care.

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